Epilepsy Talk

Dilantin – Hero or Horror? | October 6, 2010

Dilantin (Phenytoin) can be considered the grandfather of all epilepsy medications.  Although it was invented in 1908 as a chemical that could prevent convulsions during electroshock treatment, its popularity grew quickly, and as early as 1940, it was hailed as initiating a whole new epoch of anti-epilepsy drugs, motivating researchers to seek even more effective medications and pharmaceutical companies set up aggressive screening programs.

In the next two decades, a dozen new anticonvulsants were introduced into clinical therapy!

Today, Dilantin remains one of the most widely used drugs in the world. Although in most cases, it is now a second-line therapy, it’s still the drug of choice in the emergency treatment of seizures and status epilepticus.

But for the most part, Dilantin has been used for treating generalized and partial tonic clonic seizures and complex partial (psychomotor, temporal lobe) seizures. It’s also used for prevention and treatment of seizures occurring during or following neurosurgery.  It may be used alone as mono therapy or with phenobarbital and  other AEDs.

Since it first came out, Dilantin has always had its fans and its detractors.  Who can forget Jack Nicholson’s out-of-control behavior as the “crazy?” in Ken Kesey’s “One Flew Over the Cuckoo’s Nest”!

But some committed themselves to championing Dilantin for anxiety control and mood stabilization…

Dilantin as an anti-depressant…

The famous Jack Dreyfus, founder and former head of the Dreyfus Fund, left Wall Street in the 1960s and started the Dreyfus Health Foundation to research and promote the drug, which he credited with having turned around his depression. Dreyfus believed that Dilantin was a wonder drug that could promote positive mental health by controlling anger and depression.  And he contributed more than $70 million in personal financing to see Dilantin approved for those alternate uses.

Dreyfus also claimed to have supplied the drug to the late President Richard Nixon to rectify Nixon’s poor moods both during and after his presidency. Nixon’s former aides denied the story, but Dreyfus stuck to it and even expanded on it during an interview in 2000. ”When he was 70 he was here and he asked for more, and I gave it to him,” Dreyfus told the New York Times.

Dreyfus detailed his passions and his views of the drug in his book “A Remarkable Medicine Has Been Overlooked.” But despite financing four decades of research into the anti-depressant benefits of Dilantin, Dreyfus failed to sway the FDA. He died in March 2009.

Ironically, just a year before Dreyfus’ death, Dilantin was put on the FDA’s Potential Signals of Serious Risks List to be further evaluated for approval. The list means that the FDA has identified a potential safety issue, (one was quality control), but it does not mean the FDA has identified a causal relationship between the drug and the listed risks.

Possible risks…

There are some dangers of Dilantin, here are a few…

Bone Weakening  – Long-term use of Dilantin is associated with decreasing bone density, making bones more fragile which can eventually result in fractures.  So osteoporosis is a major concern.  However, this is more likely if the drug is combined with other anti-seizure medications. Patients can decrease this risk by taking Vitamin D supplements, eating calcium-rich foods and exercising regularly.

Gingivitis — Up to 40 percent of patients using Dilantin long term, experience an overgrowth of their gums, which is more common in children than adults. This can be minimized by vigorous brushing, daily flossing and treatments by dentists.  (But I’ve had galloping gum rot for 40 years!)

Neuropathy — People taking Dilantin for many years also can develop sensory peripheral polyneuropathy, or nerve damage, which can cause pain, tingling or numbness in the feet and legs.

Stevens-Johnson Syndrome – This is a rare, serious disorder in which your skin and mucous membranes react severely to a medication or infection. Often, Stevens-Johnson Syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of your skin to die and shed. It’s considered a grave medical emergency and can be life-threatening.

Purple Glove Syndrome – The FDA is investigating whether Dilantin causes Purple Glove Syndrome, a skin disease that causes swelling, discoloration and pain in the arms and legs. In serious cases, it can force amputation of affected limbs.

Birth Defects – If taken during pregnancy, Dilantin and barbiturates can cause cleft lip or palate, or other skull, face or heart malformations.

Brain Atrophy — Long-term Dilantin use is also associated with atrophy to the brain cerebellum, but it is rare for people to experience significant problems related to this side effect.

Side effects…

Interestingly, Dilantin is the most prescribed AED by general physicians in the U.S. but less so among epilepsy doctors, because of its side effects.

That says something in itself!

If you have diabetes, this drug may increase your blood sugar levels. Check your blood (or urine) glucose level frequently, as directed by your doctor. Promptly report any abnormal results as directed. Your medicine, exercise plan, or diet may need to be adjusted.

Dilantin can cause anemia by reducing folic acid in the body, a particular concern for women considering pregnancy.

Unusual eye movements, slurred speech, loss of balance or coordination, confusion, hallucinations can occur.

Along with mood or behavior changes, depression, anxiety, agitation, hostility, restlessness, hyperactivity (mentally or physically), unusual behavior or thoughts about suicide or hurting yourself.  (So much for Jack Dreyfus!)

Other possibilities are: tremor (uncontrolled shaking), restless muscle movements in your eyes, tongue, jaw, or neck, double or blurred vision, tingling of the hands/feet, facial changes (e.g., swollen lips, butterfly-shaped rash around the nose/cheeks).

More side effects include bone or joint pain, swollen glands, easy bruising or bleeding, swollen or tender gums.

Also headaches, sore throat, fever, nausea, vomiting, constipation, dizziness, unusual tiredness and conversely, insomnia are included.

And if you’re real thirsty or constipated, don’t be surprised.  Unfortunately, that seems to be the price of all AEDs.  Try Xylitol, a natural sugar substitute that helps with the dry mouth that many of us suffer.  And Salba, a natural fiber that’s a rich source of Omega-3 fatty acids and is also a natural laxative.  (Believe me, it works!)

Another article of interest:

Dilantin – What People Are Saying…   https://epilepsytalk.com/2013/06/24/dilantin-what-people-are-saying/

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  1. First drug I was given when I was diagnosed. I had problems w/ easy bleeding on my skin on my body. My dentist told me to floss more.

    The Neurologist was getting concerned after a year and never told me why. He kept taking spinal fluid. He then looked at my back and the rest of my skin and took me off of the medication of Dilantin. I apparently was having a reaction.


    Comment by Tonialpha — October 6, 2010 @ 2:28 AM

    • I was told the same but Dilantin wasn’t the only drug I’ve been on in 38 years


      Comment by Jack — October 31, 2016 @ 12:14 PM

  2. When I started with AEDs (back in the dark ages)the only drugs available were Pheno and Dilantin – Dilantin being “the lesser of two evils”…

    My long, thick hair fell out and I had to have it cut, (from the middle of my nack to a bob), I got galloping gum rot (which I still have), and I was a walking zombie.

    Let’s say, I wasn’t too crazy about it. But happily, there are lots more choices today!


    Comment by Phylis Feiner Johnson — October 6, 2010 @ 2:38 AM

  3. I’ve been on Dilantin for 37 years (Keppra added two years ago). Now being treated for osteoporosis at age 54. And I have been through many of the other side effects discussed above. But it has been effective (pretty much). My plan is to go off Dilantin in the next few months and use Keppra alone.


    Comment by Tom Waltz — October 6, 2010 @ 12:44 PM

    • Well Tom, looks like you’re from the dark ages, also! 🙂

      Were there any other options for you, either?

      Ruth has osteoporosis too. In act there’s an article in here about osteo https://epilepsytalk.com/2010/04/17/anti-epilepsy-drugs-and-osteoporosis/

      It’s slanted to women, but you can get the drift…because the consequences are mostly the same for all.

      I’m sorry you had to suffer all of the side effects. (I’m too chicken to have a bone scan!) But perhaps Keppra will be kinder to you.

      Let us know know you (and the Keppra) are doing…Good luck!


      Comment by Phylis Feiner Johnson — October 6, 2010 @ 6:28 PM

    • Hi TOM,i have been taking DILANTIN over 45yrs and it controlled my SEIZURES 100%. New Dr. comes by,switches me to KEPPRA-SEIZURE!! DRIVING!! Lost JOB-CERTIFIED LICENSED AUTO MECHANIC w/2yr college degree,over 5+certifications. Was able to collect UNEMPLOYMENT,ran out. APPLIED for DISABILITY-TURNED DOWN,TOLD i can follow simple instructions etc. so NO DISABILITY! NOW WHAT?? STILL NO DRIVE,NO WORK,NO COLLECT DISABILITY-NOW WHAT??? ED


      Comment by Ed Hricak — July 25, 2013 @ 12:54 PM

      • Disabllity applications are often turned down the first time. Apply again, and try using a lawyer to help you. The lawyer only collects money if you get awarded disability.


        Comment by Roland Koller — July 8, 2014 @ 4:42 PM

    • they tried keppra on me but it caused to many bad mood swings so I told him to take me off of it


      Comment by Jack — October 31, 2016 @ 12:19 PM

  4. I too started it in the ‘Dark ages’ but when I was coming off it earlier this year after years of use, I went through the craziest Rheumatory pain and inflamations I’ve ever had. shoot, they had to come get me with an ambulance the first time, I was in such pain and stiff like a board. I’m off it now and the symptons are gone. No one has ever put a diagnosis on what happened. I’ve been wondering about this,have you all ever heard of such a thing or was my withdrawal and symptoms coincidence?


    Comment by Charlie — October 7, 2010 @ 1:27 AM

    • I was on Dilantin for years (but not as many years as you, Charlie.) When I was taken off of it, nothing happened.

      Most of the research I did only warned about recurrent seizures.

      This comes from healthcentral.com: “Abrupt withdrawal of phenytoin in epileptic patients may precipitate status epilepticus.

      When in the judgment of the clinician the need for dosage reduction,discontinuation, or substitution of alternative anti-convulsant medication arises, this should be done gradually.

      In the event of an allergic or hypersensitivity reaction, more rapid substitution of alternative therapy may be necessary.

      In this case, alternative therapy should be an anticonvulsant not belonging to the hydantoin chemical class.”

      Sorry I can’t give you a better answer. 😦


      Comment by Phylis Feiner Johnson — October 7, 2010 @ 2:41 AM

  5. It was the med of choice for the AF, for me. I was only on Dilantin a few mths. HORRIBLE! I have no recall, but, witnesses claimed I was pretty much ‘out of it’ &/or walking, talking ‘Drunk’. And no Seizure control. I am now, (after several ‘trial & error’ meds) on Phenobarbital’s ( another grandaddy med) & have experienced ‘mood swings’ & been accused of being ‘drunk’. 😦 But, I dread the Day I have to change. I know change is coming. 😦 23 Yrs. Controls Seizures, but, is now messing w/ my Blood Pressure. 😦

    Love Candi


    Comment by Candi — October 10, 2010 @ 1:53 AM

    • Hi Candy-my Dr. already tried taking me off Dilantin.Dilantin controlled my seizures.Put on Dilantin around age 5,stayed on it till around 40-NEW Dr. come by,changes MED over to KEPPRA-SEIZURE OCCURS-DRIVING. Lose Drive License-NEED for Career as Auto Mechanic. Dr.no fill out paperwork,here i sit-HOME,miss $16.50/hr pay. Full certified,licensed w/2yr College Degree on Mechanics. THANKS Doc-change meds and here i sit-worst off,STILL WAIT for RETURN of DRIVE LICENSE! Ed


      Comment by Ed Hricak — September 17, 2013 @ 2:22 PM

  6. It messed with my HEAD, big time. But at least I had an excuse: “No brain, no pain!” 🙂


    Comment by Phylis Feiner Johnson — October 10, 2010 @ 3:17 AM

    • Me too I hate that stuff missed one dosage had a grand mal, on lamicatal, depakote


      Comment by Emauel Brown — November 12, 2010 @ 7:28 AM

  7. Dilantin – Hero or Horror? « Epilepsy Talk…

    I found your entry interesting do I’ve added a Trackback to it on my weblog :)…


    Trackback by World Wide News Flash — October 13, 2010 @ 1:49 AM

  8. no good


    Comment by Emauel Brown — November 12, 2010 @ 7:29 AM

  9. Dilantain missed 1 dose had bad grand mal the worst,try lamicatal


    Comment by Emauel Brown — November 12, 2010 @ 7:30 AM

    • DILANTIN #1-miss 1or2 DOSES-SEIZURE!! Seizure FREE 20+yrs,new Dr. comes in,switch me to KEPPRA-SEIZURE-DRIVING! LOST JOBCAREER as AUTO MECHANIC w/2yr College Degree,all INSPECTION LICENSES etc. TODAY,still no DRIVE,NO WORK,NO QUALIFY for DISABILITY-NOW WHAT?? Who pay BILLS?? I own my Home. ED


      Comment by Ed Hricak — July 25, 2013 @ 12:59 PM

  10. Dilantin was a horror for me. But just as awful as Dilantin was,that’s how wonderfully Lamictal has worked for me.

    Oh happy day!


    Comment by Phylis Feiner Johnson — November 12, 2010 @ 8:01 AM

  11. I’m nervous about going off Dilantin after 37 years. Tuesday I meet with Doc and start the process of ramping down the D and increasing the K(Keppra). Anyone have any experience with this? I plan a slow switch and to work from home. Bye bye freedom for a while.


    Comment by Tom Waltz — November 12, 2010 @ 11:19 AM

    • That’s scary, sort of like going from bad to worse. Some people are just dandy with Keppra, others have wicked mood swings. 😦

      I hope you’re one of the former…


      Comment by Phylis Feiner Johnson — November 12, 2010 @ 10:27 PM

      • I had a terrifying experience with Keppra. I had almost lost a nursing position because of mood swings! Because of conversing at the Nursing Station on a daily basis about personal complications with the switch to Keppra, I was saved my position. We know that the moods are swinging but we can’t control the action. Not all individuals react to medications the same because of the chemical make-up of each one of us. I’d definetely give Keppra a try but always tell a family member of the medication change and the risk of mood swings so that they can monitor your behavior. Good luck!!


        Comment by Julieh12901 — January 28, 2011 @ 8:13 AM

    • I have been on Dilantin for appx 35 years before my Dr. said lets try to get you off. I asked why and he was honest enough to tell me that there are side effects like osteo and cerebral atrophy in long term use. I had to be one of those that decreased very very slowly. I was on 450mg per day. It has taken a year but my last dose should be new year`s eve. I`m on Keppra now. Yes there were initial side effects but I slowly increased Keppra while doing the same with Dilantin. Coming off Dilantin I had aura`s, anxiety, hand shaking, insomnia. It is subsiding and feeling better. It will get better but you are the best judge for that. Good Luck and be patient.


      Comment by Nic — December 26, 2012 @ 2:44 PM

      • Thanks Nic. Long story short…I had problems just after I posted that comment some time ago. Needless to say I am still on my D & K cocktail. Doc says to wait a bit longer. I appreciate your comment. Best…T


        Comment by Tom — December 27, 2012 @ 12:49 AM

  12. You know, I just don’t understand why docs are handing out Keppra like M&Ms these days. (Kick-backs?)

    Were you on Dilantin before?

    I was on Dilantin back in the dark ages, when I was a kid. There wasn’t much of a choice — Pheno or Dilantin and Dilantin seemed the less of the two evils.

    But as awful as Dilantin was, I don’t think I’d be signing up for Keppra now!


    Comment by Phylis Feiner Johnson — January 28, 2011 @ 8:41 AM

    • Dilantin has always been #1 and only choice for me. Put on KEPPRA-1st seizure LONG TIME. Lost career,Driving etc. Turn 50 in little less than month and all i am/have been doing past 8+yrs-SITTING on BUTT!! Good ole Dr.say ok to go back work as PRO MECHANIC,KEEP ALL MECHANIC LICENSES-BUT,BUT,BEING the idiot HE IS-HE SENT all PAPERWORK to EMPLOYER INSTEAD of Dept. of Trans.-THEY were waiting for paperwork. Today,would need to start from BEGINNING as MECHANIC-even though i still HOLD SKILL,do side work. ED


      Comment by lckyedd — July 25, 2013 @ 9:19 AM

  13. HELP! It happened to me too…missed a dose and got hit by a grand mal (actually two seizures, back to back). My neurologist increased my Keppra by 500 mg thinking that the Dilantin was no longer effective. I since recall that I had a missing dose in my pill box. I want off Keppra and Dilantin! But what to take in their place? I know we’re all different, but can anyone help me with a recommendation? Is Lamictal effective for myocolonics and generalized seizures? I see my neurologist on Feb 9, so I hope to have a plan by then. What works for you and what kind of seizures do you have?


    Comment by Tom — February 2, 2011 @ 2:43 AM

    • Hi TOM. Had similar situation. Taking Dilantin over 30yrs w/never problem (other than thick GUMS for TEETH). Dr,new Dr.,switches me over to KEPPRA-BANG-1st seizure LONG TIME! Lost job/career(2yr college degree w/this). TRY,TRY for Disability-NO! THEY say since i am able to do all as before-maybe not 100%-i NO QUALIFY for DISABILITY. THIS new Dr. IDIOT,told me ok to work.SENDS ALL PAPERWORK to EMPLOYER instead of DMV. TODAY,i sit HOME,have bills to pay,just not sure where i will come up w/more money. I AM NOT DISABLED yet I CANT RETURN to WORK??? ED


      Comment by lckyedd — July 25, 2013 @ 9:27 AM

  14. Tom, before you go to your neuro, perhaps you should keep a daily seizure diary noting your sleeping patterns…what and when you eat…daily activities (including stresses or unusual situations)…how you feel before a seizure (auras? triggers?)…during a seizure…and after…plus the duration of the seizure.

    That might help him get a better idea of what’s going on with you, so you both can come up with a better plan.

    As for missing a dose, set an alarm on your watch or cell phone. I know it’s annoying, but it works!


    Comment by Phylis Feiner Johnson — February 2, 2011 @ 3:35 PM

  15. Thanks Phyllis. I actually started a diary on http://my.epilepsy.com/. Something I’ve been putting off. The alarm idea is great (we have an alarm clock in our TV room and I can set it for 9:00. Great idea.

    I’m thursting to talk with someone. Do you mind sharing information about your AEDs; how long you’ve been on them; side effects; dosage; type of seizures??? Or is there another blog you can point me to?


    Comment by Tom — February 2, 2011 @ 5:06 PM

  16. I kissed a lot of frogs before I found my “magic med mix!”

    Presently, I’m on Lamictal which at its lowest level is an anti-depressant. At its next level, it’s an anti-depressant AND an anti-seizure drug. And at its third level, it’s for bipolar people who have epilepsy. I’m on the second level. 🙂

    That’s supplemented with Klonopin which is an anti-anxiety med.

    Hope this helps!


    Comment by Phylis Feiner Johnson — February 2, 2011 @ 7:19 PM

  17. Hi Phylis,

    Mind if I ask…what are your side-effects from the Lamictal?



    Comment by Tom — February 4, 2011 @ 6:24 PM

  18. Hi Tom,

    I’ve been very lucky. I’m on 200 MG of Lamictal, twice a day. I found out that when I took it at night, it made me crazy hyper (some people have the opposite effect!)

    So, now I take both pills in the morning and everything has been great. I’m one lucky camper.

    I hope it works out as well for you as it has for me!

    Good luck and let me know how things turn out…


    Comment by Phylis Feiner Johnson — February 4, 2011 @ 10:45 PM

  19. Thanks Phylis. Sorry to be a pest. But I am very curious to learn if Lamictal is an option for me given your experience. I have JME, and take Dilantin (alternating daily 300 mg and 400 mg at night) and Keppra 1,000 mg (500 mg in the morning and 500 at night). I know my neurologist will have information concerning medications, etc., but I’d like to hear from some others that are actually dealing with the disease and medication side-effects.

    Thank you so much for sharing. I can’t tell you how much this means to me.



    Comment by Tom — February 5, 2011 @ 3:45 AM

  20. Tom, you’re not being a pest, but I don’t know the answer to those questions. I think it’s time to talk to your neuro about contra implications.

    Sorry. 😦


    Comment by Phylis Feiner Johnson — February 5, 2011 @ 6:51 PM

  21. Tom, we cannot give out medical advice. Dilantin is a horror story for me. That was the first med that I was put on when I was 6 years old. I got Stevens-Johnson Syndrome and was expected to die. I am still here.

    Dilantin works for most people I know who have seizures. We are all different.


    Comment by ruth brown — June 23, 2011 @ 5:12 PM

    • I was taken off Dilantin and put on Keppra-1st seizure occurs in very long time. I am 50yr old. HAD a wonderful CAREER w/2yr COLLEGE DEGREE as FULLY LICENSED CERTIFIED AUTO MECHANIC. Since Dr. took me off Dilantin-TRIED-i no longer work,LOST CAREER. Dr. no wishes to say much more! Ed


      Comment by Ed Hricak — September 17, 2013 @ 2:30 PM

  22. My neurologist took me off of my 200mg daily dose of Dilantin (actually generic phenytoin) after 25 years seizure free on that medication. I’m 44. I’ve now been off the meds for two weeks. The problem is I’ve had a persistent dull headache for the entire two weeks. Any thoughts about this?


    Comment by Jeff — July 17, 2011 @ 2:03 PM

  23. Could this be withdrawal from the Dilantin? Were you weaned off gradually or all at once?

    Perhaps you should have your blood levels checked to see how much of the Dilantin is still in your system. Also call the doctor, report your headaches and ask for advice….

    I sure hope your headaches are resolved SOON!


    Comment by Phylis Feiner Johnson — July 17, 2011 @ 6:06 PM

    • The funny thing was, I had been taking 200mg daily for many years. The doctor’s instructions were “200 mg for 2 weeks, then 100mg for 2 weeks, then stop” I wasn’t sure what the point of the first 2 weeks was. Anyway, it was basically a 2 week weaning.

      I’ll call my doctor tomorrow.


      Comment by Jeff — July 17, 2011 @ 10:22 PM

  24. Well, the weaning is so you don’t go into sudden withdrawal. But, I guess that didn’t work so well.

    Please call your doc and tell him what’s going on. I don’t think you should be having this reaction.


    Comment by Phylis Feiner Johnson — July 18, 2011 @ 12:26 PM

  25. Jeff, I was sorry to read about your experience getting off Dilantin. I am still on Dilantin (38+ years now). I reported that I was going off because of osteoporosis (see my entries above). But without the support of my employer, I can’t (long ongoing story). My neuro still wants me off Dilantin, so we are planning for it this Winter. Your situation reminds me to take it slowly. If the neuro wants a four week withdrawal…what would be the problem with an eight or ten week withdrawal? All we have is time…or seizures. Best to everyone…Tom


    Comment by Tom Waltz — July 18, 2011 @ 3:20 PM

    • Well the good news is I barely felt the headache yesterday, and this morning — not at all so far. I’ll be thrilled and grateful if this is the worst that happens. Good luck this Winter.


      Comment by Jeff — July 19, 2011 @ 10:18 AM

      • Well, we can only hope that the side effects are waning as the drug takes effect and is accommodated by your system.

        Let’s hope so.

        Keep in touch and let us know how you’re doing…


        Comment by Phylis Feiner Johnson — July 19, 2011 @ 3:25 PM

    • HORROR STORY-READ THIS: Taking Dilantin 35+yrs-NEVER PROBLEM. Put on KEPPRA-SEIZURE,happen Driving. Lost Drive License and CAREER as Certified Licensed Auto Mechanicw/2yr COLLEGE DEGREE. Good ole Doc.,not know what he doing,sends EXEMPTION PAPERS to EMPLOYER instead DMV. Here i am,sit home on BUTT,BILLS to pay,NO INCOME,DONT QUALIFY for SSI since i can pretty much do all as before but just little slower till get used to work again. TURN 50yr old few weeks-NOW WHAT?? ED


      Comment by lckyedd — July 25, 2013 @ 9:36 AM

    • I am 49yr old,seizures start around age 5-put on DILANTIN and remain seizure free-UNTIL Dr. takes me off-SEIZURE!! Lose career as licensed certified Auto Mechanic-HERE I STILL SIT as Dr. wont felease me back to work even being seizure free over 10+yrs and being out of work. DILANTIN #1 for me. Ed


      Comment by Ed Hricak — September 17, 2013 @ 2:35 PM

  26. In one year, I have lost two teeth; 5 more must be pulled and a bridge made. One that is removeable. Skin is sinfully dry and wrinkly, and it was not so, prior to Dilantin. Memory loss; loss of concentration. Dizzy, off balance, Two years ago I had a bone density scan. I had osteoporosis. Two years later, after injecting Forteo to build new bone, no better. Dilantin conuntered it. I had better find a way of moving around on the floor.My right hand trembles when I hold a fork; docotor never once told me to draw blood to check Dilantin levels and blood sugar levels. I take a whoe bath once a week: afraid of falling in the tub enclosure. Can’t drive. And a new one: dry, crepy skin on my arms and hands.And I do not “do” sun. I started HRT when I had a hysto in 1995. Not only did Premarin stop the hotflashes it kept my skin glorious.(no one my age has glorious skin) Worried about breast cancer, heart disease, and all the others when using Premarin, but the good skin appeers to have been worth it.. Now, I do not even have that. And there is one hair growing under my chin that I cannot see well enough to tweeze out. Living in my jammies. Also, I think Dilantin users give off different chemical smells, most importantlyly,our sexual pheromones. My husband says so. I can go 5-7 days without needing an antiperspirant. My hub is one of those men who can sweat, burn in the sun, and NEVER have body odor….now I smell like Dilantin. ICK! And I cannot taste foor, but have gained 20 pounds in one year.


    Comment by Michele — June 3, 2012 @ 8:32 PM

  27. hi my name is mike and ive been on dilantin for 15 yrs trying to wean myself off slowly feeling a littlie weird at times is that normal?


    Comment by mike — June 8, 2012 @ 11:24 AM

  28. I felt weird the whole time I was on Dilantin (10 years.) After 15 years, I should think you’d experience some “withdrawal.”

    Are you tapering down slowly? Was this your decision or your doc’s? Will you be replacing the Dilantin with anything else?


    Comment by Phylis Feiner Johnson — June 8, 2012 @ 12:15 PM

  29. Hi Mike! How is it going for you (weaning off dilantin)? I have been on it for 24 years and am seriously considering weaning off starting next month… Really want to but am VERY SCARED…
    I guess just looking for a support network….


    Comment by Angela — July 8, 2012 @ 1:05 PM

    • Angela, you can count on having a support network here!


      Comment by Phylis Feiner Johnson — July 8, 2012 @ 4:08 PM

      • Angela,
        I can tell you that I was weaned off a year ago after 32 years of Dilantin use and I’ve had no problems..


        Comment by Jeff — July 8, 2012 @ 4:45 PM

    • I was taken off Dilantin after 35+yrs being on it,switched to KEPPRA-SEIZURE-DRIVING! Back on Dilantin,NO WORK,NO COLLECT DISABILITY-NOW WHAT?? ED


      Comment by lckyedd — July 25, 2013 @ 9:40 AM

  30. Phylis- Thanks!

    Jeff- That’s great to hear!! I’m very happy for you!! I’m seeing a lot of people talk about scary things like depression, etc.. in the weaning stages.. some talk about having to go on meds for THAT as a result… Did you have any of that? Did you go onto a different med or none at all? If the latter – did you start feeling better – thinking clearer – right away or at all??
    Anything you can share – I would very much appreciate.. Very big decision as you know..


    Comment by Angela — July 8, 2012 @ 9:37 PM

    • Angela, Your message sounds like me (scared to go off dilantin after 38 years). I had hoped to a year ago but my employer wouldn’t support it (long story). My neuro said it was best to wait until things at work get resolved.

      If others have gone off dilantin, your stories would be appreciated.


      Comment by Tom — July 9, 2012 @ 1:18 AM

      • Tom- I’m sorry to hear that. If you care to, would you mind elaborating a bit on your employer not supporting it..? Don’t need to mention co names or anything.. Along with actually deciding to go thru with getting off the med, that is one of my biggest unknowns/dilemmas – how to handle this with my employer. I work a fulltime job, which I know I can still perform would just have to be from home (whereas historically my co has not been very supportive of work-from-scenarios..). The other thing I don’t know is if this is something that qualifies for like a disability leave (have never taken or investigated one of those..)…


        Comment by Angela — July 9, 2012 @ 10:44 AM

      • Hi Angela,

        Employers can be wonderfully supportive and compassionate, or they can be terribly misinformed and sometimes down right malicious. I’ll tell you what I told a friend last week with a similar question about accommodations…go slow (listen for cues and watch body language), be reasonable, and keep your expectations low. The ADA has many believing that the civil rights battle for people with disabilities has been won…don’t believe it. It’s being won one person at a time; sometimes in meetings accompanied with kindness and empathy (I pray this is your experience), other times with contempt (I have a feeling from my experiences that this is the rule rather than the exception). In my case, I can do my entire job from home as a writer. But my employer, even with telework policies in place, has caused me to go down the long road Dr. Fisher described as option #3 (going to court). Meanwhile I’m still on dilantin. I’m persistent and up to doing my part to make changes where others may also benefit. Best wishes. Maybe someday we can all tell our individual stories (mine’s still being played out).


        Comment by Tom — July 9, 2012 @ 7:36 PM

      • Tom- First of: I will pray for you to get things straightened out at work and moved in your favor. No reason they shouldn’t. Keep at it!! Second – a million thanks for sharing your experience with me! It’s so much easier knowing that we’re not alone in this. Makes a big difference. Before I got your reply, i went out to take a walk and found myself asking myself if I really want to do this. How crazy is that??? After health for my family, wishing to experience life without Dilantin would probably be next on my wish list.. It’s just a VERY tough decision. Even given that my work cooperates and all the stars align – the question at the end of the day remains – can my body live without a substance it’s lived WITH for more than half my life… What happens if I end up having a seizure and hence losing my driving priviledges (and hence normal life as I know it) for a year and regretting… Going to talk to my Neuro tomorrow morning..


        Comment by Angela — July 9, 2012 @ 9:33 PM

      • Thank you Phylis for your kind remarks.

        Angela…thank you as well. This is a wonderful time in my life, and God is with me as I walk down this path. It’s not easy, but not lonely either.

        As for dilantin…wanting to get off a substance that I’ve been on for a long time (38 years)…well your description fits mine as well. I pray that you have a good outcome tomorrow. Let us know how it goes if you’re up to it.


        Comment by Tom — July 10, 2012 @ 1:05 AM

  31. Yes, Tom. It would be terrific if everyone could share their Dilantin experiences. It would help others understand what THEY went through — and perhaps help the others to get prepared, mentally and physically.


    Comment by Phylis Feiner Johnson — July 9, 2012 @ 9:28 AM

    • I was taken off Dilantin and Put on Keppra-SEIZURE-1st 1 in long time. Lost Drive privelage for now,WORST of ALL-LOST CAREER as CERTIFIED LICENSED AUTO MECHANIC-2yr college degree. ONLY you can decide what to do next. BEST WISHES,STAY in TOUCH. Ed


      Comment by Ed Hricak — September 17, 2013 @ 2:46 PM

  32. Angela,

    The ADA was amended in 2008 to clarify and extend who qualifies as being disabled. The ADA applies to businesses that employ 15 or more people, or who operate with Federal funding. Such businesses cannot discriminate on the basis of a disability.

    If a person with epilepsy cannot perform a job because of seizures or other limitations related to their disability, then the employer must attempt to make a “reasonable accommodation” for them within the framework of their employment.

    Before terminating an employee with epilepsy, an employer will need to be prepared to document attempts to arrange this reasonable accommodation.



    Comment by Phylis Feiner Johnson — July 9, 2012 @ 12:45 PM

    • Phylis- Thank you! This is helpful info. I have an appt to discuss this with my Neuro tomorrow and then based on outcome of that conversation, with my boss later in the week…


      Comment by Angela — July 9, 2012 @ 12:50 PM

  33. Tom, Thank you for your generosity in sharing your experience, your advice and your candidness. I wish the world of epilepsy was populated by more people like YOU.


    Comment by Phylis Feiner Johnson — July 9, 2012 @ 7:52 PM

  34. Phylis,
    I started having grand mal seizures at the age of 11 and had fewer than a dozen through my teen years. At the age of 19 I threw away my dilantin and about a month later had a seizure. I got back on, (200 mg daily) and stayed on, seizure free, until a year ago. In July of 2011, to my surprise, my neurolologist suggested I come off after an EEG. I was weaned off in a few weeks. I think that feel mentally sharper… at least it seems to me that I can think more clearly. I’ve had no unsolicited compliments from the world however, so if there has been any cognitive improvement it must be slight [ probably because I was already so immeasurably brilliant :>) ]
    I’m 45 years old, I eat well and exercise vigorously (run 30 miles a week). I also drink a bottle of red wine every weekend. I do try to get enough sleep. I worried a little about it for the first few months — once I almost convinced myself that I had one of those aura experiences. Now that it has been a full year I’m just really enjoying life without asking myself “Did you take your medicine?” Good luck.


    Comment by Jeff — July 15, 2012 @ 6:03 PM

    • Good for you Jeff! I guess there’s hope for us all. Thanks lots for sharing your story and your encouragement.


      Comment by Phylis Feiner Johnson — July 15, 2012 @ 6:38 PM

      • “Did you take your medicine?” Ah, that five-word question that most of ask ourselves many times a day. Good to hear about your situation Jeff. It’s great to hear about other’s experiences; and the range of outcomes is as varied as the people.

        Angela, how did your situation with your employer turn out last week? Or is it still in the process?


        Comment by Tom — July 16, 2012 @ 11:47 AM

      • Wonderful story Jeff! Hope you continue feeling great..

        Phylis – yes, you know it – those 5 little words.. As far as my “outcome” – spoke to my neuro re getting off Dilantin.. He said would not suggest to get off meds altogether, knowing my history, but did recommend for me to switch to Keppra (and he has been for the last few years..). Even gave me the “schedule” for switching.. So being that I already opened my mind to a change, I figured I would think about this time (kept being afraid before – Dilantin has kept me seizure free for 24 yrs..). So I went on to do some research on Keppra….. Very SCARED by what I found. I think I will take (keep) osteoperosis and gum disease over becoming a “looney”…
        Not sure if anyone has made the switch (Dilantin to Keppra) recently and wants to share how things are going…


        Comment by Angela — July 16, 2012 @ 12:30 PM

  35. Hi Angela,

    Well, if you want to get even more freaked out about Keppra, read these two articles 😦

    Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death


    Keppra – What People Are Saying…



    Comment by Phylis Feiner Johnson — July 16, 2012 @ 1:29 PM

    • Thank you Phylis! I pray for every one of us. (On Keppra or not..).


      Comment by Angela — July 16, 2012 @ 1:39 PM

    • I was taken off Dilantin and put on keppra-SEIZURE,1st one in long long time. Back on Dilantin-SEIZURE FREE. Ed


      Comment by Ed Hricak — September 17, 2013 @ 2:49 PM

  36. We need all the prayers you can spare!


    Comment by Phylis Feiner Johnson — July 16, 2012 @ 2:14 PM

  37. Hi, Im on Dilantin and generic Keppra. My dilantin started for me ten years ago at 41. Now 9 months into furthering the physician led taper of the dilantin. The process has its ups and downs. From all of the latest thought on tapering off D I have found that nutrition Definitely plays an important role. I found some info on side effects and nutrition while tapering off meds at theroadback.org. It has a disclaimer to consult one’s physician regarding topics mentioned. Prior to reading it I had already had started 23 months ago from Dilantin 300mg 2x daily to where now the last 9 months Ive been ok at 200mg 2x daily. All the while on gKeppra 500mg 2x daily. Yes there have been side effects, but Ive been SzrFree since 2004 and I will be the poster-child for tapering down as healthily as possible or else start investing in mylan, audubo…, parke-davis….best of luck to us all from Greg in Mich.


    Comment by Greg — December 2, 2012 @ 9:48 PM

  38. Good for You Greg! And thanks for the link.

    Many don’t realize nutrition’s important role in healing. And the FDA is down the throats of supplement companies and supporters, because of pressure from BIG Pharma.

    Thus the disclaimers. Everybody in traditional medicine, says the claims can’t be proved.

    But coming from 10 years of writing for alternative medicine — health and wellness — I know many of these supplements, compounds, herbals, botanicals DO work. (At least for me.)

    And I’m thrilled to hear of your success!


    Comment by Phylis Feiner Johnson — December 3, 2012 @ 11:39 AM

  39. I,myself,take Dilantin,and Phenobarbitol,and am looking for natural alternative,If there really Is some sort of danger In taking this medication,so,If somebody out there Is definitely qualified to point In the direction of something natural,please do so. Thanks,and God Bless you.


    Comment by Johnny Edward Harjo — January 9, 2013 @ 10:42 AM

  40. Johnny I wish I could. Anyone have any ideas?


    Comment by Phylis Feiner Johnson — January 9, 2013 @ 1:19 PM

  41. I have been taking Dilantin (400mg.) at bed time & Tegretol 200mg/four times a daily for twenty years. I have a gunshot wound to my head as a result. Have not had an episode of seizure in over fourteen years now. I wanted to come off my medication. I had an E.E.G. performed on my head. Doctors said it was not a good idea to come off my med’s. Does anyone have any ideas? It has been a very long time for myself to be taking these med’s. Any ideas??? : /


    Comment by Jaime Villarreal — January 19, 2013 @ 1:52 AM

  42. Jaime, at the risk of a cliche; “if it ain’t broke, don’t fix it.”

    If you are having side-effects from the Dilantin, document them and tell your doc.

    Or, if you’d like to switch to another med, tell him/her and ask what he/she thinks is the best course.

    Generally, doctors are quite content to leave things as they are, unless there is a problem.

    So speak up and maybe you’ll be heard!


    Comment by Phylis Feiner Johnson — January 19, 2013 @ 9:47 AM

  43. I took Dilantin for over 15 years along with a small amount of Neurontin and was doing fine. I hadn’t had a full seizure in 7 years or an aura in 3.5. My neuro never asked for a bone density test or anything other than Dilantin blood levels over the years. I heard of this possibly being an issue, so I had my GP do the bone density test, and it showed slight bone loss (osteopenia in a few areas) which they blamed on the Dilantin, being that I am male.

    I wish I had never changed drugs, as I felt awful for a good 6 months after finishing my taper off of D, I was still taking 600mgs of Neurontin a day. Felt dizzy, clammy, no sex function, not good. After a year, with no seizure I finally go the doc to try to end the Neurontin (Ithought that could be the cause of the persistent dizziness). Just before that was to end, I had a single seizure, so they moved me to Keppra and we ended the Neurontin.

    Once Neurontin was ended, the dizziness went away, but the sex function and desire has not come back since being on Keppra. Also, I feel weak and tired all the time. I’ve been on Keppra for almost 3 years now, and I am thinkning of going back to Dilantin to see if that helps with the sex functioning and mental sharpness. Not sure what else to do, the neuro is okay with going back since I didn’t have many seizures either way, but I’m scared about not ever being myself again. Like I said, I wish I hadn’t messed with changing anything in the first place now..


    Comment by Doug — January 27, 2013 @ 1:31 AM

  44. After reading this, you might want to go back to Dilantin…

    Keppra – What People Are Saying…



    Comment by Phylis Feiner Johnson — January 27, 2013 @ 9:48 AM

    • I’m considering it definitely. I’ve just been trying to determine if my symptoms could be result of the long term Dilantin use, or from taking the Neurontin alone and now Keppra alone. No docs have been able to give me good answers.

      They’ve done, hormone tests which have come back normal, except for very slightly raised prolactin (by slight I mean 1 or 2 points higher than norm). They’ve done TSH which is normal and T4 was normal the one time I pushed to have it done. It is frustrating though because both the endocrinologists and neurologists have had to be pushed to do testing to try to figure out what is going on.. they almost always say oh, you don’t need that tested. It’s like one side has no idea of the other side, and I’m left to figure it out on my own. So, while I want this to go back to normal, I don’t want to make anything worse if Dilantin was a contributor to the problem.


      Comment by Doug — January 27, 2013 @ 2:03 PM

  45. Began self medication after introduction from writings by Jack Dreyfus & his book.

    I’ve been using for over twenty years……………

    Very infrequently 1 to 2 caps per Month for depression, or inability to sleep.

    The sleep problem results from mentally cycling thru several problems, projects or decisions that must be
    dealt with concurrently.

    30 – 45 minutes after taking a 100 mg capsule I fall asleep / same result for depression – I am able to begin productive activity, think more clearly, interact more calmly, get things done.

    I am 65 male in excellent health.

    I use NO Medications of any kind other that an occasional Aspirin for inflammation resulting from strenuous physical activity.

    Dilantin / Phentonin has been very helpful.


    Comment by Larry — January 27, 2013 @ 4:05 PM

  46. Doug…if you don’t push those docs and act as your own advocate, you’re sunk.

    On the other hand, you can’t play doc and second guess them.

    And meds, plus add-ons, are a crap shoot.

    My husband is on Neurontin for severe neuropathy. He’s ok but has gained 25 pounds (edema) which makes him crazy.

    I was a zombie on Dilantin. My very long hair became very short (big trauma for a teen) and I got galloping gum rot.

    But there were only two choices back then…Pheno and Dilantin. (Guess that shows you how old I am!)

    I’ve never taken Keppra, so I can’t talk from personal experience or pass judgment.

    But for a starter, why don’t you keep a daily diary of your reactions, behaviors, triggers, side-effects, etc.

    It might help your doc pin things down a little better.

    And if these jerks don’t want to listen to you, how about a second opinion?

    The link below is to a compilation by website forum members who have had positive personal experiences with docs over the years. It might help…

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors



    Comment by Phylis Feiner Johnson — January 27, 2013 @ 6:01 PM

  47. Thanks Phyllis. I did go see another Dr. and he was okay with me going back to Dilantin, but again they don’t want to do all the tests I want to ensure that Dilantin has been some of the problem (since I didn’t feel bad, while I took it, only after I stopped.). And frankly, I feel like Ive seen a bunch of docs and found all of them fairly standard in their approach. I even had one tell me, neuros couldn’t take into account every issue patients complained of because he didn’t want to use anecdotal evidence..otherwise he said they’d be treating 1000 different symptoms of different patients! If I could find a good one, that was thorough and listened, and where I didn’t feel like I knew more about side effects than they did, I’d hang on to them forever!

    Luckily for me, I never had real gum problems (other than some light redness) or anything else while I took Dilantin, other than the slight bone loss.

    I wonder if the memory and mental sharpness would come back if I got off of Keppra, or if once its gone, its gone..?


    Comment by Doug — January 27, 2013 @ 9:27 PM

  48. Memory is an odd thing. I THINK the chances are good that your mental and cognitive acuity would improve once you take Keppra out of the picture.

    It is seems your issues with Keppra have been far worse than with Dilantin.

    You’ll have to titrate up slowly anyway, so why don’t you keep that diary with thorough notes and give it a try.

    At this point, it doesn’t seem like you’ve got much to lose. (Except your mind!!!)

    P.S. I almost died (wrong dose of AEDs). I had cascading seizures, heart attack, life support, the whole deal.

    And of course, I was on every drug known to mankind to keep me alive.

    Although it took me 3 months to find my way back to the keyboard, here I am. And that’s how Epilepsy Talk was born.


    Comment by Phylis Feiner Johnson — January 28, 2013 @ 9:55 AM

    • Thanks for the advice. BTW, I did keep diaries during all drug changes (from ending Dilantin and going with Neurontin alone and then from switching from Neurontin to Keppra). Doing so, didn’t spur my doctors into action, as I spent a year on Neurontin feeling dizzy before he agreed to end it. As I said, I then had a seizure that prompted the move to Keppra, but in my defense, the dizziness largely stopped after ending the neurontin..


      Comment by Doug — January 29, 2013 @ 1:32 PM

  49. Good for you, keeping the diaries!

    So should we assume the Neurontin was the culprit?

    And what is your decision with Keppra vs. Dilantin?

    (It sort of sounds like you’ve made up your mind!)


    Comment by Phylis Feiner Johnson — January 29, 2013 @ 2:38 PM

    • I feel like Neurontin was culprit for dizziness at least. But, I am leaning towards going back to Dilantin to try and deal with the sexual issues, libido, and mental sharpness currently going on..

      I’m nervous though because I’ve had very slightly elevated Prolactin levels for awhile now, and I’ve read that can be a pituitary problem and I don’t know if Dilantin had any role with that. But, I can’t get any docs to help me understand if that is likely or if I might make the situation worse by going back to Dilantin. Also, I have to keep an eye on the bone loss thing if I go back..


      Comment by Doug — January 29, 2013 @ 6:20 PM

  50. Could the Keppra have been responsible for your pituitary problems?

    Frankly I’m stumped. It would be great if the endo and neuro talked to one another. (Ha!) But their attitude seems to be “Don’t worry, be happy!”

    If it were me (which it isn’t) I’d go back to the Dilantin (sex is a wonderful thing) and keep an eye on my Prolactin levels.

    If your insurance allows a full thyroid panel every 6 months, that would be ideal.

    If not, full bloodwork every 3-6 months will at least tell you about your med-blood levels and how your body is responding to the Dilantin.


    Comment by Phylis Feiner Johnson — January 29, 2013 @ 7:19 PM

    • Keppra could be the cause of the slightly high Prolactin, but I also had a few tests where it showed up a little high when I was on Neurontin alone. (I was on Neurontin for a year, after I ended DIlantin).

      Since the issues began, (it started when I was tapering off of Dilantin), I’ve had 8 prolactin tests in the past 3.5 years (1 year on Neurontin and the past 2 on Keppra).. 6 of the 8 tests came back slightly high, but the docs don’t think it was high enough.. so I don’t know if it is an issue or not. My fear is that Dilantin contributed to this, and going back is a mistake, but I can’t get any guidance. Meanwhile, I’m sick of living without a sex life or energy..


      Comment by Doug — January 31, 2013 @ 2:42 PM

  51. The normal values for prolactin are: Males: 2 – 18 ng/mL


    That’s a pretty broad range. What’s your level in the scheme of things?


    Comment by Phylis Feiner Johnson — January 31, 2013 @ 3:15 PM

    • When high, its been 20 to 23. The ref. ranges in all my tests were 4.0 – 15.2.


      Comment by Doug — January 31, 2013 @ 3:37 PM

  52. I’m stumped. But I still vote for Dilantin! 🙂


    Comment by Phylis Feiner Johnson — January 31, 2013 @ 5:28 PM

    • Well, I appreciate the assistance.. My plan is to go back to the endocinologist in a few weeks and ask for a cortisol and DHEAS test just to get those numbers prior to taking Dilantin again. Then I’ll present my other numbers and try to get an opinion if there is any pituitary issue and if that could be caused by Dilantin.
      If he feels all that looks okay, then I’ll make the switch to Dilantin and see what happens. I feel like a guinea pig but I think the only way to know for sure, since nobody tested me when I felt fine taking Dialntin earlier on, is to take the drug and see what happens, only this time Ill be watching and demanding comprehensive bloodwork to find out what my numbers are, and hopfully I’ll feel normal again too. It may not work out, but its all I know to do at this point.


      Comment by Doug — February 1, 2013 @ 4:36 PM

  53. A. DON’T put yourself down!

    B. Starting with a baseline is brilliant. At least you’ll know where you’re going. Up vs. down.

    C. You are not a guinea pig. You just have the difficult job of being an advocate for yourself, without (it seems) any other help.

    D. It’s a PLAN. And a good one.

    E. I have confidence in you and that it will work.


    Comment by Phylis Feiner Johnson — February 1, 2013 @ 6:48 PM

  54. Dilantin was a nightmare for me until I decided to do something aboult my uncontrolled blood levels. I was on 400 mg/day for years. Dizzy morning highs were the norm. After 30 years, I went to my doc and asked to have blood level checked every other day for two weeks. I found that taking 400 mg/day resulted in my becomming toxic, but by taking 300 mg/day I was vulnerable to seizures. So the answer was to take 300 mg/day one day then 400 the next. I was seizure free for years. It was a temporary fix…now I’m planning to change meds because of osteoporisis.


    Comment by Tom — February 1, 2013 @ 8:30 PM

  55. Hi Tom!

    It’s great to hear from you. And thanks for your excellent and helpful input. (Doug, I hope you’re reading this.)

    Couldn’t you have had adjunct therapy instead of changing doses of Dilantin every other day? Something that would have worked WITH the Dilantin without making it toxic?

    Anyway, the $64,000 question is: What are switching to?

    Our operators are standing by… 🙂


    Comment by Phylis Feiner Johnson — February 1, 2013 @ 8:47 PM

  56. Phylis, thanks so much for your comments, you are great! Tom, did your Doc not realize that Dilantin comes in 30mg capsules as well? Seems like if 400mg was too high and 300mg was too low, then and 30 or 60mg would be appropriate rather than alternating between 400 and 300..

    Also, Phylis, I noticed you referenced me in your reply to Tom, but I’m not sure what you were wanting me to notice there?? Are you just pointing how docs can make odd decisions or the risk of bone loss with Dilantin? Or, did I miss something there?



    Comment by Doug — February 1, 2013 @ 11:51 PM

  57. GOOD point about the mg. level, Doug. Why is it that WE have to figure this out, instead of the docs?

    I referenced you in my reply to Tom because I thought his situation would be interesting to you and perhaps you could help each other.

    After all, that’s what we’re here for! 🙂

    AND, I’m curious about what drug the docs will put Tom on next. And how it works for him.


    Comment by Phylis Feiner Johnson — February 2, 2013 @ 12:13 PM

  58. Well, in Tom’s case it would seem his doc is not doing him justice. If he is toxic on Dilantin then that dosage needs to be dropped immediately, not up one week and down the next. Secondly, if to put on a lower level to avoid toxicity does not allow seizures to be controlled, then his doc should have been looking for other meds to try.

    Being on a toxic level of dilantin for an extended period of time can cause many long term problems, including the osteoperosis the Tom mentioned he already has. If his doc had reduced his dosage to not be at toxic levels, or absent that, switched drugs, perhaps he would not have bone loss as badly as he does today.

    It is amazing to me how many docs don’t even exercise common sense in these matters.


    Comment by Doug — February 2, 2013 @ 4:15 PM

  59. Personally, I’d ditch the doc and get a second (or third) opinion.

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors



    Comment by Phylis Feiner Johnson — February 2, 2013 @ 6:21 PM

  60. Agreed.

    As for me, the sexual effects have been the most debilitating. I’m single, in my late 30s, and don’t want to even try to date with things like this. I was fine, until I was tapering off of the DIlantin. I was down to 200 or 160mg a day, tapering to zero, when it all changed. Not completely dead down there, but almost, and no desire.

    It was like that after completely ending Dilantin and through the year on Neurontin alone, When I ended Neurontin and went to keppra, the desire and function back for about a month, but then went away again once I settled in on Keppra. And, the docs have been no help.

    I don’t know if my body was used to the Dilantin and when I was ending it, I crossed some threshold, or if it was the neurontin and now the keppra doing it to me. But, i’m getting no help in that regard and I’ve seen neuros, endos, and urologists.

    Up until the DIlantin taper I was fine in that department and never complained of anything like this. Based on what I’ve read, it seems hormonal like in symptoms, but my numbers always come back good enough according to the docs..

    So, as I’ve said, I guess its back to Dilantin, but I’m scared I’ll make it all worse and the docs just shrug..


    Comment by Doug — February 3, 2013 @ 3:52 PM

  61. I don’t honestly know what the cause is.. Thanks for the link, I’ve heard that about keppra from others before too. I was getting a second opinion once from a neuro, and I mentioned this, and he told me that he didn’t use anecdotal evidence when making his recommendations! He just said the literature shows Keppra isn’t known for that.. Needless to say, thats the last time I went to that guy.



    Comment by Doug — February 3, 2013 @ 11:29 PM

  62. Not crazy. Just ignorant.

    Have you read “Keppra – What People Are Saying…”



    Comment by Phylis Feiner Johnson — February 3, 2013 @ 11:34 PM

  63. I’ve been on Dilantin 37 years. I’ve tried all the AEDs available. I’m currently taking 5 AEDs (under the supervision of a highly reputable epileptologist). He wants to get me off the Dilantin soon, but we haven’t found anything to replace it yet. I’ve been taking Fosamax for over 15 years to prevent the osteoporosis, but never heard about it causing cerebral atrophy. I’ll ask about that…since I’ve been experiencing long-term memory loss.


    Comment by Therese — February 4, 2013 @ 9:08 PM

  64. Oy. I hate to tell you this, but Fosamax is probably worse for you than Dilantin. 😦

    “Studies have shown that the long term use of Fosamax may increase the risk of a serious side effects in the jawbone known as osteonecrosis of the jaw. Additional research has suggested that Fosamax side effects may also lead to decay or death of bone in the hip, knee or shoulder, leading many individuals to seek Fosamax alternatives for treatment of osteoporosis.

    Fosamax natural alternatives may be suggested by your doctor. A daily supplement of Vitamin D and Calcium are often recommended by physicians as a natural remedy for osteoporosis, or to be taken with medications.”


    This is for REAL. Few docs will tell you because of the $$$ involved (like the Lipitor scam). But, please believe me, Therese.

    I spent 10 years as a health & wellness writer. There are so many creepy stories that it would make your head spin.


    Comment by Phylis Feiner Johnson — February 4, 2013 @ 10:17 PM

  65. Therese, not to be intrusive, but if you are taking 5 AEDs, why does your doctor need to find something to replace the Dilantin? How does he know that you won’t remain seizure free just by continuing with the other 4 drugs?

    Also, 5 sounds like alot to take together, and while your memory issues could be from the Dilantin, when you are taking that many AEDs together it may be difficult to ascertain which drug, or which combination of the drugs, are the problem..


    Comment by Doug — February 5, 2013 @ 1:56 PM

  66. Another thing I wonder about is the speed of bone loss with Dilantin. I’m sure it varies from person to person, but given that some of scores are considered osteopenia (the worst number is -2.1 in the L4 region of my back) and I’m looking at going back to Dilantin to see if I feel more like myself again, I’d like to know how long I have before I need to worry abou the bone loss thing.


    Comment by Doug — February 6, 2013 @ 12:17 AM

  67. As a long term Dilantin user, I’m due for a bone density check after 4 years. I’m curious about my osteoporosis progressing after increasing my vitiman D and calcium intake during that time. I’ll let you know.


    Comment by Tom — February 6, 2013 @ 1:41 AM

  68. Ugh.. I just got an email back from a doc who says he is a neuro-endocrinologist.. Why can’t these docs agree on anything?! I included some of his message below, but he still can’t explain why I didn’t have these symptoms prior to ending Dilantin!

    “First, your bioavailable testosterone level is at the 55th percentile, which may be normal, but may not be normal for you. Having symptoms of hypogonadism (low libido, etc) would imply that a given level is too low for a given guy. Your estradiol is low, which is good. If you go on Dilantin your bioavailable testosterone levels will decline due to liver induction of SHBG. Keppra could be causing some of your cognitive issues, but I would stay away from liver inducing anticonvulsants.
    One could also increase your bioavailable testosterone, at least for a period of time, to see if higher levels make your quality of life better including your libido.”

    The other thing they seem to miss is that if you go on testosterone therapy, that has its own consequences, including lack of fertility, or you might have to take someting else to control rising E2 levels, and those drugs can make the bone loss worse! What is a person supposed to do??


    Comment by Doug — February 11, 2013 @ 1:04 PM

  69. I’m stumped. As I’m sure you are. But in my gut (not my brain) I’m still wary of Keppra.


    Comment by Phylis Feiner Johnson — February 11, 2013 @ 1:39 PM

  70. I wrote him back saying my local neuro says I should try Dilantin again given I felt better taking it in the past and asking him what he thought. His reply, “Unclear how to answer your neurologist except to say why does anything happen when it does and not another time.”

    I’m wondering if going back to Dilantin, just to check, increases SHBG like he said and lowers BioT happens, if I switch off of it again, would those levels return to normal or be irreversibly compromised..


    Comment by Doug — February 11, 2013 @ 2:58 PM

  71. Good question. (Boy Doug, you really know your stuff!)


    Comment by Phylis Feiner Johnson — February 11, 2013 @ 3:19 PM

  72. Thanks, but like most of us.. I’ve had to learn the hard way. If I was 10 years younger I’d try med school to at least try to be a doc that gets the seizure/drug thing from a whole body perspective rather than the piss poor excuse for physicians I’ve had to deal with..

    Most don’t really want to deal with difficult cases.. So, they don’t.


    Comment by Doug — February 11, 2013 @ 6:58 PM

    • Read this very cool article:

      A Neurologist Talks About His Own Epilepsy…

      Seeing Epilepsy From the Patient’s Point of View



      Comment by Phylis Feiner Johnson — February 11, 2013 @ 7:23 PM

      • This was a great one PHYLIS…. One thing that gets me going to see doctors is hearing the same thing…. Over 30 plus long years and all us who have it know its tougher than these doctors think…. I been to many doctors who say they know how it is…. But in my book if u never had any you don’t know how it is…. Damm since i been 3 i have had these damn things and i can’t even get my license because of it…. Im a fighter and will never give up here…. Over the years i have come from like 4 to 5 a day to about 12 a month…. When i was 3 they say the measles caused me to get them and i have had them since…. I guess the measles never came out and that’s what i have by people why i got them…. I was even doa but guess what im still going and wont ever give up….. Keep your heads up folks and always think possitive 🙂


        Comment by Ron — March 8, 2013 @ 4:19 PM

  73. Thanks for sharing the article Phylis. Good docs are hard to come by…key thing to remember is that they’re human. Keep looking until you find the one who “works” for you.


    Comment by Tom — February 11, 2013 @ 9:45 PM

  74. Yes, good article. I wish he was further down south, and I might give him a look. The stuff he said about Docs not understanding the implications of the disorder or its treatments was dead on!

    Tom, did you ever hear back on your bone density? And, what are they recommending for your treatement?


    Comment by Doug — February 12, 2013 @ 12:47 AM

  75. I saw the list and I may use it, but I’m doc weary from seeing 3 different neuros already. I have an appt. tomorrow with my endo to ask him about 20 questions about blood tests (and usually you only have about 5 mins with the doc) I want done and other curiosities. I dread it, because I feel like I have to twist his arm to get him to agree to anything and he most often wants to say its the neuros job.

    But, of course, the neuro says he knows nothing about hormones, etc.. In the 15+ years I took Dilantin the neuro never mentioned bone loss or bone density tests or calcium once.

    I feel like I am having to choose between bone health and my sex life and cognitive function. Which one do you want to give up? I know I annoy these docs because I am trying to figure out what exactly changed or happened to cause all this after I ended Dilantin and they don’t want to investigate at all, just move you on to another drug, pat you on the head, and kick you out the door.


    Comment by Doug — February 13, 2013 @ 4:14 PM

  76. Only 5 minutes? Well, I hope you’re typing up a list of questions (and insights) with the most important ones first. But you probably don’t need to be told that.

    I’m not surprised that the neuro knows nothing about endocrinology. But not to tell you about bone loss and calcium is just plain criminal.

    I’d go for the cognitive functions and, of course, a sex life. The calcium can be helped with supplements.

    Speaking of which, does your endo believe in supplements? They might help (or hinder) depending upon the formulary.

    (I spent 10 years of my freelance career writing about Health & Wellness, so I’m big on the supplement concept.)

    Don’t worry about “annoying” these docs, you know, “the squeaky wheel…”


    Comment by Phylis Feiner Johnson — February 13, 2013 @ 6:32 PM

    • Dilantin, bone loss and calcium. I had a nuro that never mentioned these issue to me in two years. She was at a comprehensive epilepsy center. When I left for a new doc, I was given my first bone density test, which found serious osteoporosis. I wonder how many horror stories there are about bad doctors. My guess is that we all have at least one. But for all the bad, there are really good people doing the best they can for those of us with a very complex disease.


      Comment by Tom — February 14, 2013 @ 9:25 AM

  77. Well, it may be more than 5 mins, but its usually not long enough to get through everything..

    The endo is okay with me taking Calcium and Vit D supplement. I take a product called Bone Up I found at the local vitamin store. (It has a mix of magnesium, Vit K, Vit D, Calcium, etc)

    As far as supplements for any of my other problems, they haven’t mentioned anything. Although last time, he said I could use testosterone cream, but that ticked me off because he had been against that previously and it seemed like he threw it out in exasperation.

    My testosterone numbers are good from what I’m told, plus I learned on my own that testosterone supplements can lead to infertility (I dont have kids yet, but would hope to one day) and of course if the excess testosterone leads to excess estradiol then you have to take something for that, which can hurt your bones.

    I’d love to find new docs that seem on top of all this, but when I’ve gone to new neuros and questioned them on if they test for bone issues, hormone and thryroid issues, etc, for their patients on AEDs they often seem to get defensive.


    Comment by Doug — February 13, 2013 @ 6:51 PM

  78. I just emailed my supplement godesses and asked them for a bioavailable calcium supplement recommendation, and a bioavailable testosterone supplement with no estradiol, that won’t compromise your liver or add to your bone loss problems.

    That’s the best I can do, for now.

    Let me know what happens with tomorrow’s appointment.



    Comment by Phylis Feiner Johnson — February 13, 2013 @ 7:08 PM

  79. Thanks for checking. You’ve been great! FYI though my total testosterone numbers are always on the higher end of normal and my Bioavailalbe Testosterone numbers are slightly above mid normal..


    Comment by Doug — February 13, 2013 @ 8:21 PM

  80. What about “First, your bioavailable testosterone level is at the 55th percentile, which may be normal, but may not be normal for you. Having symptoms of hypogonadism (low libido, etc) would imply that a given level is too low for a given guy.”

    Well, I’ve got TWO VP’s and a researcher working on this, plus they’re about to round up a bunch of docs for opinions.



    Comment by Phylis Feiner Johnson — February 14, 2013 @ 12:14 AM

  81. Phylis, I certainly didn’t mean to offend you, or seem like I was demanding information. I was just providing info on my situation. You’ve been a fantastic help to me.

    The quote from the neuro-endo about 55th percentile is what he said about my BioT level. I guess I considered mid-normal to be 50th percentile, so I was just stating it another way.

    If you need anything from me let me know.. just having a place to sort through all of this has been helpful to me..


    Comment by Doug — February 14, 2013 @ 12:26 AM

  82. As far as what I wanted you to do, I honestly didn’t expect anyone to do anything but discuss in this forum..

    I just want to know (if there is any way to actually know) what my best option of feeling normal again is, whether it be taking testosterone and something like arimidex with Keppra, or by switching back to Dilantin. No doc has been able to tell me why Id only felt the effects during the taper off of Dilantin and afterwards, and not during the previous 15 years on the drug.

    They mostly want to experiement by trying out the testosterone, but I am not eager to add new drugs to the mix. If we are going to experiment, then I waonder why not just go back to Dilantin (although bone loss is a concern)and my neuro is okay with that as seizure prevention was good on either AED.

    I hope that is what you were asking for, and again, if I have inadvertently seemed demanding or offensive, please forgive me as that was not my intent at all.


    Comment by Doug — February 14, 2013 @ 12:36 AM

    • No Doug, you’re not demanding. I’m just out of my element at this point on how to help you.

      That’s why I called in the Marines.

      Basically what I said to them was:

      “I have a guy on my website who’s having all of this fallout from his meds. The Keppra is awful and the Dilantin he was on previously resulted in bone loss and calcium depletion. He wants to go back to the Dilantin, so I need a bioavailable calcium supplement recommendation.

      Now, for the hard part…

      The other drug (Keppra) leaves him plainly impotent. His estradiol level is good, but his testosterone level is in the toilet. So, what I need us a bioavailable testosterone supplement with no estradiol, that won’t compromise his liver (anti epilepsy drugs do that all by themselves) or add to his bone loss problems.”

      Jenny (top boss) wrote back:

      “Hi Phylis,

      I’m copying Michele (researcher) because she may have a good rec for the first one. (Calcium depletion.)

      We can ask one of the docs about the impotence issue…unless you know of something, Karen or Michele.”

      Did I get it right? I don’t want them barking up the wrong tree, because they’re crazy busy.

      Do you think this will help?


      Comment by Phylis Feiner Johnson — February 14, 2013 @ 10:05 AM

  83. Actually my testosterone numbers are not in the toilet. Last time, I had them checked my Total Test was 735 ng/dl (Ref Range348-1197) and my BioTest level was 232 ng/dl (Ref Range 95 – 350).

    But, thats what is so weird, the keep telling my numbers are okay, (except for mildly elevated Prolactin) but that I shouldn’t be having these issues with Keppra and that I’d be more likely to have problems on Dilantin, but of course when I took Dilantin I was fine, and since I didn’t complain, no one bothered to ever check what my numbers were back then.


    Comment by Doug — February 14, 2013 @ 4:38 PM

  84. I saw the endo today and it wasn’t much help. He basically doesn’t know what to do, but like all of them, they like Keppra better than Dilantin. He says my hormone numbers look good, and he doesn’t think my Prolactin numbers are worth treating (even though the are slightly high).

    He theorized that perhaps the Keppra is acting as a dopamine antagonist which is causing the Prolactin to slightly elevate, but that was just specualtion. Even so, he was more worried about seizures and said he wouldn’t change drugs, but that it was up to me since the neuro was okay either way. Also, I asked about doing DHEAs, cortisol testing before I went back to Dilantin and he wouldn’t do it since he didn’t think it necessary.

    So, like all other times, it is bascially my decision on whether to go back to Dilantin, stay on Keppra, or stay on Keppra, but add something like Cabergoline to lower prolactin and see if that makes any difference.

    This is starting to feel like to much to ask you and your people to research, so if they can just provide their opinions we can leave it at that. I don’t think I’ll be wasting my time with new docs much more, as it doesn’t do me any good. Maybe its all just unknowable.

    Thanks for everything..


    Comment by Doug — February 14, 2013 @ 4:47 PM

  85. Sigh. Oh Doug, don’t give up…yet!

    Here’s what my team came up with:

    The researcher recommended AdvaCal from Lane Labs for the calcium deficiency…

    And here’s what the doc wrote:

    “Bioidentical topical testosterone bypasses the ‘first-pass’ phenomenon that all oral meds must deal with (they go to the liver first, as soon as they’re absorbed).

    If kept within the normal range, it shouldn’t be a problem. I’d use a pharmacy that knows what it’s doing, like Women’s Int’l Pharmacy (www.womensinternational.com [forget about the name]), or Tahoma pharmacy (www.tahomadispensary.com).

    Either way, he’ll need to be monitored by a health nut-type doc, so he can get a compounded Rx there.

    Dr. Wright’s clinic has dealt with med (and seizure) problems before, so it’d be nice if he were able to get there (www.tahomaclinic.com).

    ANY such liver stress as dilantin or anything else should be protected against with a full dose of both milk thistle extract, and n-acetyl-cysteine (NAC).

    Also I’d add some arginine (2000 mg/day, empty stomach).

    That’s a starter routine, anyway.”

    Ok Doug, I doubt you’re going to go to the State of Washington. (Even if this guy is pretty good. I wrote for him. But I’ve never been treated by him.)

    And you didn’t seem too keen on topical testosterone — but here’s the reason why it works.

    A compounding pharmacy is a smart idea and so is the suggestion of a complementary doc. (A doc who has an MD but also does alternative medicine.)

    Arthur has been treated by a Naturopath (but not a “crazy”) as a backup to our internist (who is very good. The internist I mean.) As yes, he does it by remote. Tests are sent and analyzed and they go from there.

    And he goes to an Alternative Doctor for his neuropathy. He gets prolo-therapy and other treatments. Acupuncture and massage were only of limited help.

    The only reason I mention a Complementary doctor or Naturopath is that it’s another way of looking at things — in addition to your neuro and endo.

    Dr. Wright is pretty conservative. Maybe too conservative for your liking. But perhaps you could do a phone consult?

    Ironically, thre’s a lecture (in person) March 12th on Optimizing Thyroid And Adrenal Function! The contact number to register is (425) 738-5652 and you can leave a message with your name, and telephone number. They will contact you with further information.

    Maybe you can arrange to participate by speaker phone?

    I know, it’s a long shot…


    Comment by Phylis Feiner Johnson — February 14, 2013 @ 5:40 PM

    • Phyllis, is the Dr. Wright mentioned Dr. Jonathan V. Wright? I read something online that referred to him as a “quack” for some dubious practices in the past.. It is so difficult to know what to believe anymore with regard to what docs to choose and who to listen to. One group slams one side while another slams another, and we as patients are left to figure out which is the right method. It’s exhausting.


      Comment by Doug — June 24, 2013 @ 7:54 PM

  86. Thanks for all your efforts. You’re right, I don’t like the idea of additional Testosterone because my testosterone numbers have always been good and using an outside gel or somesuch with already strong numbers doesn’t add up logically and can lead to fertility issues and, should you go that route, it is usually something that has to be done permanently going forward. Plus, additional testosterone often leads to additional estadiol and then that has to be dealt with, so to me, its a slippery slope.

    That said, I’m open to talking to people who think outside the box, so I’ll give some consideration to the doc you mentioned and i’ll do some research on it.

    Thanks again. Like I said if I wasn’t pushing 40, I’d maybe go back to school and become a doc, as I wish there was more I could do to help people like myself. I’ve met many who fall between cracks of the medical establishment and it can be disheartening..


    Comment by Doug — February 14, 2013 @ 9:28 PM

  87. It’s never too late…


    Comment by Phylis Feiner Johnson — February 15, 2013 @ 10:42 AM

  88. Maybe not technically, but starting a traditional medicine route at age 40 would be difficult for sure. Also, I’m not sure if traditional medicine is the way to go anymore, if you were to go to school.. It seems most neurologists focus is on medications that are designed to deal with seizures as a symptom rather than with a focus on identifying root causes and addressing those individually.. That would be where I would rather put my focus..


    Comment by Doug — February 17, 2013 @ 5:32 PM

  89. Dilantin. Has worked best me.. I been on i over 30 years.. My doctor
    is worried of problems from being on it so long with my liver… My folic acid get low so I have had anemia for years to because of it… So I’m slowly getting off it and taking keppra to. I been on 600 mgs of filantin a day for the last 10 years. Keppra is not pleasing me so far my appatite is getting awful and I only been on it a month and seem to be real sore at times… And losing weight..


    Comment by RON — March 8, 2013 @ 11:08 AM

  90. This is not to scare you, just to educate you.

    Keppra – What People Are Saying…



    Comment by Phylis Feiner Johnson — March 8, 2013 @ 11:48 AM

    • Phylis thanks for all the info on everything i see on here from u… Im glad u r seizure free good for you thats great to see… I been having eoilepsy since i been 3 years old here…. I still get them but nothing like i did years ago… Dilantin always seemed to work the best for me even my mother said that…. I still get tonic clonic and simplex seizures always have here… Do u know what can cause grandmal ones only when a person sleeps…. Thats when i get them ones like 99 percent of the time i have a grandmal its when i am sleeping…. A few a month i get…. Thanks alot have a good day


      Comment by Ron — March 8, 2013 @ 4:02 PM

      • Interestingly enough, studies have shown that 10-45 percent of people with epilepsy have seizures that occur predominantly or exclusively during sleep or occur with sleep deprivation.

        I favor Klonopin which is helpful for the REM sleep disorder and (mostly) a whole night’s sleep.


        Comment by Phylis Feiner Johnson — March 8, 2013 @ 5:47 PM

      • Ok thx about the klonopin… I will ask my doctor that all about that does sound good because i sure know if i have a grandamal its always when i sleep if i have one…. I have a eeg in 2 weeks again…. I sure know the way the side affects are with this keppra im not going to stick long if it even seems to get worse this month…. I seem really sore and seem to be feeling ran down with dilantin i never felt like this…. And really never had headachs at all from it…. The thing that worried me was the liver thing from being on it so long i been on it like 33 years….Slowly trying to get off it down to 400 mgs from 600mgs a day….. Thx again


        Comment by Ron — March 8, 2013 @ 6:10 PM

    • Phylis do u know if keppra can cause kidney stones…. Because doesnt it go to the kidneys not the liver…. I have had 3 kidney stones in my life it has been in like the last 15 years…. THANKS again and have a good day


      Comment by Ron — March 8, 2013 @ 4:29 PM

      • On Mar, 1, 2013: 17,926 people reported to have side effects when taking Keppra. Among them, 59 people (0.33%) had Kidney Stones (Nephrolithiasis).

        This seemed to resolve itself within the first month, but then zoomed up to 2-5 year period. (71.43%)

        That’s scary!

        Gender of people who have Kidney Stones when taking Keppra was 60.87% female and 39.13% male.



        Comment by Phylis Feiner Johnson — March 8, 2013 @ 5:59 PM

  91. So far from what keppra seems like i believe dilantin had less side affects…. I was on dilantin over 30 years started off taking 200 mgs a day to 600 mgs a day… Im still on dilantin slowly getting off it only because the liver problems it can cause…. Only problem i can say dilantin has caused me all these years is low folic acid over the years… Besides that it worked pretty good here the best out of any other med going…. Phenyabarbatal gave me hives and the ohers did nothing to help… If keppras side affects are going to be this way with feeling sore and getting headachs like this well than it will be back to the one and only grammpa of them all again for me…. They come out with new meds and jump saying this and that really after 30 plus years of KEPPRA what side affects will it cause people…. Im sure it will be more than having anemia and low folic acid….. Im thinking im going to stick to my dilantin and just go back to 600 mgs a day of that and say goodbye to keppra for good…. It even causes insomoneia which dilantin never gave me….. Nothing is better than the antique way when it comes to anything in my book


    Comment by Ron — March 8, 2013 @ 3:24 PM

  92. You’re completely right. Keppra is brand new and nobody knows the future ramifications for side-effects or any damage to the body.

    As far as folic acid goes, that’s fixable. 400 mcg. Folic Acid is recommended by doctors since it’s destroyed by many anti-epilepsy drugs and is necessary for normal neurological function.

    It sometimes reduces seizure frequency and it often improves mood, intellectual speed, alertness, concentration, self-confidence, independence and sociability.

    In fact, one of the most important vitamins for you to include in your diet is Folic Acid (Folate) which can help deal with vitamin loss caused by medication.

    Here’s the run-down on foods rich with folic acid:

    Dark Leafy Greens:
    Spinach — 1 cup = 263 mcg of folate (65% DV)
    Collard Greens — 1 cup = 177 mcg of folate (44% DV)
    Turnip Greens — 1 cup = 170 mcg of folate (42% DV)
    Mustard Greens — 1 cup = 103 mcg of folate (26% DV)
    Romaine Lettuce — 1 cup = 76 mcg of folate (19% DV)


    Broccoli — Just one cup of broccoli will provide you with approximately 24% of your daily folic acid needs.

    Citrus Fruits:
    Papaya — One papaya = 115 mcg of folate (29% DV)
    Oranges — One orange = 40 mcg of folate (10% DV)
    Grapefruit — One grapefruit = 30 mcg of folate (8% DV)
    Strawberries — 1 cup = 25 mcg of folate (6.5% DV)
    Raspberries — 1 cup = 14 mcg of folate (4% DV)

    Beans, Peas and Lentils:
    Lentils — 1 cup = 358 mcg of folate (90% DV)
    Pinto Beans — 1 cup = 294 mcg of folate (74% DV)
    Garbanzo Beans — 1 cup = 282 mcg of folate (71% DV)
    Black Beans — 1 cup = 256 mcg of folate (64% DV)
    Navy Beans — 1 cup = 254 mcg of folate (64% DV)
    Kidney Beans — 1 cup = 229 mcg of folate (57% DV)
    Lima Beans — 1 cup = 156 mcg of folate (39% DV)
    Split Peas — 1 cup = 127 mcg of folate (32% DV)
    Green Peas — 1 cup = 101 mcg of folate (25% DV)
    Green Beans — 1 cup = 42 mcg of folate (10% DV)

    Avocado — up to 90mcg of folate per cup, which accounts for appoximately 22% of your daily needs.

    Okra (Yuck) — Just one cup of cooked okra will give you approximately 37 mcg of folic acid.

    Brussels Sprouts — Eating one cup of boiled brussels sprouts will give you approximately 25% of your daily recommended amoun of folic acid. Brussels sprouts are also high in vitamin C, vitamin K, vitamin A, manganese and potassium.

    Seeds and Nuts:
    Sunflower Seeds — ¼ cup = 82 mcg of folate (21% DV)
    Peanuts — ¼ cup = 88 mcg of folate (22%)
    Flax Seeds — 2 tbs = 54 mcg of folate (14% DV)
    Almonds — 1 cup = 46 mcg pf fp;ate (12% DV)

    Cauliflower — Eating just one cup of cauliflower will give you approximately 55 mcg of folate, accounting for 14% of your recommended daily value.

    Beets — Eating one cup of boiled beets will provide you with approximately 136 mcg of folate, accounting for 34% of your daily needs. They also provide detox support, making them one of the best liver cleanse foods on the planet.

    Corn — Just one cup of cooked corn will give you approximately 76 mcg of folic acid, accounting for almost 20% of your daily needs.


    Comment by Phylis Feiner Johnson — March 8, 2013 @ 6:32 PM

    • yep when something new comes out i always am worried about the long run with it over years…. Because its new they dont know anything about it say 30 years down the road what it will cause in the long run


      Comment by Ron — March 8, 2013 @ 6:43 PM

      • That’s the way it is with everything. You never know until you try it. And then, you still don’t know!

        Now be a good boy and go eat your greens! 😉


        Comment by Phylis Feiner Johnson — March 9, 2013 @ 9:36 AM

  93. Ron, I’ve made the same change you are making. For me, Keppra has also screwed up my sleep. I just don’t sleep well anymore. Some nights I wont sleep at all. Strangely, this hasn’t led to seizures (as one might expect with no sleep), but it is wearing me down at times.

    Also, I am experiencing sexual difficulties ever since ending Dilantin. (had no problems before that) I started noticing that about halfway through my Dilantin taper.

    Also, Keppra has made me feel physically weak and sometimes not mentally sharp, as well as blunted emotions and not as good memory.

    I had no problems taking Dilantin other than bone loss, and like you my doc felt Keppra was a better choice based on side effect profiles. However, my quality of life has not been the same and I am thinking of going back to Dilantin.

    If you haven’t already started the Keppra, I’d recommend getting a full hormone workup (not just serum levels, but also Bioavailable levels of Testosterone, Estradiol, Prolactin, LH, FSH, etc.) Also, I’d get Thyroid (TSH, T4 and Free T3) and get DHEAs and Cortisol.

    You may not need all those tests, but its a good idea to get a baseline established while you are feeling okay in case anything goes haywire on the new drug.

    Good luck to you!


    Comment by Doug — March 14, 2013 @ 12:30 AM

  94. Thanks so much for your input and advice Doug.

    It’s never better than hearing the truth from someone who’s been through the trenches.


    Comment by Phylis Feiner Johnson — March 14, 2013 @ 8:48 AM

  95. I started the new Keppra stuff and ended up in the ER at the hospital after being on it a little over 2 weeks…. They dont know what caused it but for some reason i had 4 grandmal seizures in a row within a few hours… So someone called the ambulance… Sore as heck i still am after 3 days…. Dilantin never let me down like Keppra has so far… 1000mgs of Keppra i was on and 400mgs of dilantin my doctor was and is slowly trying to get me off the dilantin because i been on it over 30 years….. I dont know but im thinking dilantin is a way safer drug in my book with alot less side affects…. Never did i feel as ran down as i do with Keppra and never did 4 grandmals come out of nowhere like that before… Dilantin is way better in my book…. When it comes to doctors not many understand whats its like or how much a seizurere lbs the human body…. I got doctors even saying Keppras better but where id like the evidence to even believe a word out of their mouths…. Keppra is side effect city is what it is in my book… Keppra is a new drug no one knows nothing about at all!!!!!!!!!!! Thinking on going back to my 600 mgs of dilantin a day and just say no thx Keppra for good!!!!! Like i always say the antique way is the way to go


    Comment by Ron — March 15, 2013 @ 2:17 AM

  96. Keppra is NOT better if it does all those things to you.

    I had the occasion to speak briefly with my idol Orin Devinsky, at a conference in NYU.

    The first thing I asked him was “What’s the deal with Keppra. People are keeling over, turning into savages, non functional. WHY does every doc prescribe it?”

    He simply said: “It works.”

    And in clinical trials, statistically, medical indexes and comparisons, it does work.


    The subject that brings the most readers to Epilepsy Talk is: “Keppra — What People Are Saying…”

    That should tell you something. (Oh, by the way, we’re almost up to 1,000 readers a day!)



    Comment by Phylis Feiner Johnson — March 15, 2013 @ 8:57 AM

    • Thx Phylis at least someone online understands how it goes with epilepsy!!!!!! And its someone thats beeen threw it THX alot


      Comment by Ron — March 15, 2013 @ 11:50 AM

  97. PHYLIS i was pounded to the ground 3 nights ago and the paramedics wouldnt let me be in my own bed…. I am still sore from that rough nite after 4 grandmal seizures anyone is going to be just wanted to be left alone…. The damn paramedecis even called the cops and they arrested me until i got into the ambulance because i didnt want to go to the hospital and just sleep at home!!!!! I never felt so horrible with taking just the dilantin… Keppra was taking my appatite away i seeemed to being getting heart burn even on it a migrane headache and was feeling sore plus i had what seemed liked no energy at all just didnt feel like myself i didnt….. Kept having like a pressure in my lower back it seeemed like my kidney area and since i have had 3 kidney stones in like my last 15 years i sure dont want another one if i can help it…. Since i have not taken any KEPPRA the last 2 and a half days i seem alot better and feel alot better….. The first word everytime i go to the hospital its always the same thing did u do drugs have u drank they always ask which i understand that…. But when they do blood work urine test nothing is ever found because i dont do either of them things….. Its always the same thing everytime it is at the hospital and thats why i cant stand going to the ER…. My doctor still wants me on KEPPRA but i can careless what he says or any of them say after them side affects DILANTIN is a way safer medication by a mile in my book…. If my doctor drops me he drops me i can careless he isnt the one having to put up with a drug thats a big joke in my book…. DILANTIN is way better and way more safe i believe……. NEVER did Dilantin ever make me feel like that and allow 4 grandmals in a row….. Dilantin works way better for me and thats the way im going


    Comment by Ron — March 15, 2013 @ 11:33 AM


      2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors


      And if you have the stomach for it, file a claim for abuse. (Through your local EFA.)

      Unfortunately, many people have gone through what you have. Sad but true.

      And my heart goes out to you, as it does for all of them.

      If you want a small sampling of their stories read:

      “Hospital Abuse”


      It’s enough to make you weep.


      Comment by Phylis Feiner Johnson — March 15, 2013 @ 3:19 PM

      • Thx on the list there…. Im not one to go for hospital abuse unless say they took off the wrong leg…. But i know how some hospitals are i seen a guy try to lift my dad by himself and drop him…. I know how doctors cover other doctors backs…. Some doctors just dont careless how things are!!!!! Thank you very much on all that i will have to check them things out!!!!!!!!!!!!!!!!! THX ALOT


        Comment by Ron — March 15, 2013 @ 3:31 PM

      • Phylis u r so right… I am going for a eeg on the 19th and next month on the second a new neurologist i got a appt with…. I heard he is pretty good…. The one thing that had me going the most was with the paramedics i mean after 4 grandmals they wanted me up and on my way to the hospital going with them just like that…. I didnt want to go than the cops are here i told them where to go to and my one friend said the cops had their tasers ready.. Damn even having that on their mind after someone had 4 grandmals in my book is jumping the gun i think…. I believe getting tased could bring another seizure on and i was laying in my bed and they were thinking that isnt that something…. Thats the way it is these days i guess after 4 grandmals they want u up and going in seconds!!!!!!


        Comment by Ron — March 16, 2013 @ 12:48 AM

  98. Ron, most docs want to shift away from Dilantin because of the long term side effects. Those are real and need to be monitored. That being said, everyone reacts to a drug differently and what may be poison to one person can be a savior to another. From my experience taking Keppra, I can tell you that the extreme fatigue experienced when you first start up does get better over time, although I still feel physically weak from it.

    I was moved off of Dilantin due to bone loss. And being male, and only in my late 30s, that can be a scary thing. However, if you feel like crap taking Keppra today, then worrying about long term effects tomorrow doesn’t seem as relevant.

    Do what you need to do, and if your doc doesn’t like it, find someone else.

    When I first started taking AEDs, Tegretol was the new rage in the drug world. After taking it for 2 years, I started getting an intermittent rash. The doc refused to believe the Tegretol was to blame, saying it would have given me the rash immediately and not after 2 years of use. He kept asking me to see if I was using a new detergent or something like that. This went on for many miserable months, until I finally fired him and went to another doc. That new doc put me on Dilantin, and magically all the rashes went away.

    Listen and trust yourself on this, as I have never found a neurologist who was an effective advocate on my behalf. I’ve ALWAYS had to do it myself.

    Good luck to you!


    Comment by Doug — March 15, 2013 @ 1:48 PM

    • Thx Doug for getting back to me on that… That is what i am doing,,, I am going the direction i feel better… It sure is not KEPPRA for me i know that…. I mean i was out of it bigtime from having 4 straight grandmals seizures in like 2 to 3 hours it was!!!!! I cant even remember what anyone looked like from the hospital or from the Ambulance!!!!! Never did i ever have 4 grandmals in a span in such a short time…. Yet they say this MEDICINE works in my book Keppra doesnt do a damn thing for me…. Dilantin never let me down like that… My blood pressure was real low to ppl from my family said to…. I was working my way off dilantin i went to 400 mgs a day and was taking 1000mgs a day in Keppra…. But the hosptial said my count for my dilantin was really low why i have no idea maybe the KEPPRA somehow got my dilantin count low if it did i dont know why because i was taking them both together!!!!!!!! The side affects from the KEPPRA were awfull for me everyday it just seeemed to get worse…. I always seeemed to have pain in my lower back and a migraine and was always feeling sore plus my appetite sucked and i just always seeemed so ran down and tired…. Dilantin does have its side affects but nowhere near Keppras and Dilantin never let me down that bad in 30 plus years!!!!!!!!


      Comment by Ron — March 15, 2013 @ 3:22 PM

  99. Why don’t they ever listen?

    But congratulations to you Doug, for having the strength and persistence to be your own advocate.

    A lot of docs don’t listen, or care.

    (I’m lucky. I have a wonderful neurologist who I’ve been seeing for 15 years. He also saved my life. He even has a good sense of humor!!!)

    Ron, If the med doesn’t work and the doc doesn’t care, MOVE ON.

    It’s not worth your health or your sanity. NO ONE should have to go through what you’ve suffered!


    Comment by Phylis Feiner Johnson — March 15, 2013 @ 3:25 PM

  100. Thanks to the both of u on here Phylis and Doug!!!!!! Not many people these days that i can say know how it really goes with epilepsy that talk….. I always will stand tall and proud here and hopefully someday be totally seizure free!!!!!!! It hasnt happened yet its been a long 30 plus years here but proud and tall i will always stand :)…. Never giving up is what wins the battle!!!!!!! Glad as heck to have found 2 people that know how it goes!!!!!!!!!!! Im 39 years old here so u both know…..


    Comment by Ron — March 16, 2013 @ 1:38 AM

  101. Hey Ron, Congratulations! New doctor = new chance = new hope.

    GOOD for you for taking things into your own hands. (And for not getting killed by the tasers. You can bet they’d give you another seizure — at the very least!)

    You keep standing tall and proud, because you have PLENTY to be proud of: your knowledge, responsibility, persistence, sharing, caring. All of those make you the wonderful person you are.

    (And if you think I’m impressed that you’re 39, I’m turning 60 in June!!!)


    Comment by Phylis Feiner Johnson — March 16, 2013 @ 9:48 AM

    • Phylis really damn than u do know how it goes than!!!!!! U sure seem and sound strong for being 60 thats great to hear…. Being strong is the best way to be… I mean when ppl retire alot of them go downhill… Im a pretty strong person my dad pasted away after a massive stroke 5 months ago it was!!!!! It was me and my mom who took care of him until the end because never would us 2 see him end up in a nursing home!!!!!! He had a massive stroke when he went for his 3rd chemo treatment he had throat cancer so had to go for chemo….. U got lots to be proud of to never give up and always try to think possitive!!!!!! I know it can be tough with epilepsy because i know ppl that never had a seizure yet think they know everything about it and like to run their mouths and put others down when it comes to epilepsy or other health problems!!!!!!!! I just tell them kind where to go and dont let it bother me like others do…. Because i know how it goes and whats its all about….. THANKS alot and the same to u again stall tall keep that smile on ur face and never give up!!!!


      Comment by Ron — March 16, 2013 @ 11:17 AM

  102. As I always say, not to belabor the point: “You can either be a victim of epilepsy and let it rule your life — or you can choose your own destiny.”

    And by the way Ron, “retirement” is a dirty word. You only “retire” when you die.


    Comment by Phylis Feiner Johnson — March 16, 2013 @ 1:21 PM

    • U got that right stay tall and proud and never give up!!!!! Retirement is a naughty word i totally agree u totally got that right….. I been told by many im stubborn but with epilepsy stubborn is something it takes to not get down over it and show it up…. The more i show it up the more proud it makes me!!!! Believe me i will always be someone u will always see tall and proud here and never feel down over it like others do???? Anyone ever come on here and down u always will have us proud ones here that never give up!!!!!


      Comment by Ron — March 16, 2013 @ 3:08 PM

      • Stubborn is GOOD.

        I once asked Charlie why he wore his hair so short, because it shows off his ugly, long, jagged scar from brain surgery.

        MY choice would be to grow my hair longer. (Vanity?)

        But he said he was PROUD of his scar and whenever someone asked about it, he got to give them a little education about epilepsy!

        What a guy!


        Comment by Phylis Feiner Johnson — March 16, 2013 @ 6:21 PM

      • Winning the battle is what counts… I have seen many people down from epilepsy who have it!!!!! I even been putt down myself by a few people like my X… But guess what makes me proud the most is my 2 healthy beautiful daughters that are in their teen years and as healthy as can be!!!!!!! I know it can be tough but the stronger a person is the better it is!!!!!! If life was perfect for anyone it would suck and be as boring as heck!!!!!!


        Comment by Ron — March 16, 2013 @ 6:33 PM

  103. Boring, yes. So you think that’s why adversity was “created”? To keep us on our toes? It sure does that! 😉

    P.S. I never knew you had two wonderful daughters! Now THAT’s an achievement!!!


    Comment by Phylis Feiner Johnson — March 17, 2013 @ 9:25 AM

  104. […] Dilantin — Hero or Horror?    https://epilepsytalk.com/2010/10/06/dilantin-%e2%80%93-hero-or-horror/ […]


    Pingback by Nocturnal Seizures — A Living Nightmare | Epilepsy Talk — March 18, 2013 @ 10:23 AM

  105. Never stops.. Saw another doc today to get hormone panel done before possibly going back to Dilantin. And now, my hormones are so different (testosterone is about half of what it was 6 months ago) the doc basically told me he doesnt know what to do for me, has no experience with how seizure medicines affect men and hormones and the like, and recommended someone across the country, as if my situation is so bizarre and dire that there only a few specialists in the entire country that might be able to help me.

    I’m sick of this doc merry go round, where they send to someone else and then that guy doesn’t help and one to the next and the next and the next..

    I’m exhausted..


    Comment by Doug — May 2, 2013 @ 5:34 PM

  106. I really feel for you.

    Did you have the full hormone panel done? (Serum levels, Bioavailable levels of Testosterone, Estradiol, Prolactin, LH, FSH. Along with Thyroid –TSH, T4 and Free T3 — DHEAs and Cortisol. )

    Is this the same neuroendocrinologist that you saw before?

    Has anything changed since your last testing?

    Is your neuro reading the results?

    If not, here’s a wild card: What about taking the results to your internist, see what he has to say and if he has any recommendations.

    Sometimes the best place to start is home.


    Comment by Phylis Feiner Johnson — May 3, 2013 @ 10:01 AM

  107. The urologist did these tests and it was just testosterone, estradiol, LH, FSH, Prolactin. I still have to do it piecemeal. Some from GP, some from Endo, and some from urologist. I don’t even bother sending these results to the neurologist anymore, since he told me last time how he isn’t “certified” to read those tests, wouldn’t know how to interpret them, or issue a treatment if something was wrong. His only area of concern is am I having seizures or not.

    None of them seem to know anything. The internist I know (not my GP), is nice, but just listened to me and told me he learned alot last time I saw him, but I got nothing out of it, so I’ve sort of given up on him.

    I’m getting older, not married, haven’t had kids, and I’m discouraged that I’ll never have those things in life. I’m on my own and all I know to do is go off keppra and go back to Dilantin, but who knows if that caused all these issues or not..

    I haven’t been this down about it all in a long time, but I’ve been fighting with different docs for the past 3.5 years over this (since I came off Dilantin in the first place), and I’m just worn out. I don’t feel like a man anymore, don’t feel like myself anymore, and life is passing me by. No one can offer help, they just pass the buck to each other or to some other new doc, who at this point I feel probably doesnt know anything either.


    Comment by Doug — May 3, 2013 @ 2:50 PM

    • I’m out of solutions. And I feel awful for you Doug.

      But why don’t you TRY the Dilantin and monitor your thyroid then take it from there?

      Otherwise, as it stands now, you’ll never know.


      Comment by Phylis Feiner Johnson — May 3, 2013 @ 4:25 PM

      • Phylis, wanted your opinion on something.. My last urologist visit ended with him admitting he didn’t know what to do and him referring me to yet another urologist he hoped might be able to help me. This new guy is in another city (5 hours away). In your opinion (just your opinion), do you think this is worth my time, or should I just switch badk to dilantin first (and end keppra) and see what happens?

        I checked with this new urologist and he can’t get me in till late summer, so that would mean waiting yet another 3 months (since when I emailed him, he said not to change drugs before visiting him).

        I just don’t want to wait, drive all the way there, pay the money, and have yet another specialist say, oh I have no idea about seizure drugs or if they are responsible for hormone/sexual issues you are having.. and then be stuck in the same place I am now.. Of course, don’t want to make a mistake if dilantin was part of the problem either… ugh..


        Comment by Doug — May 16, 2013 @ 4:15 PM

  108. Hi, Phylis. I’ve read through a lot of these comments and want to add my own. After 7 years, 3 months, and 25 days, I had two seizures (grand mal) on April 9. I’m on Dilantin (300 mg) and Depakote (2500 mg) daily. My doc put me on 350 mg of Dilantin, and a week later my blood level went from 11.3 to 17.3. A week after that, though, it went down to 11.4 again, even though I was on an increased dose. Doc put me on 400 mg a day. Super-dizzy. Tired. The Dilantin free level was toxic at 2.9. Now, the free is still toxic, at 2.71, even though the total level is in therapeutic range.
    My doctor now wants to change me off of Dilantin because my levels aren’t staying steady, and because I have developed peripheral neuropathy in my feet. I see him again June 7 to address “these new issues.” EEG this morning, MRI tomorrow, EMG in a couple weeks. I was pretty discouraged when doc called today to tell me the Dilantin free was still toxic. Of course I feel better because I’m back to 300 mg a day, rather than the 400, but I’m to have another level drawn Wed. to see if the free is still coming down (hope, hope).
    Sorry this is so long. Everything I’m reading about Keppra sounds awful. Doctor suggested maybe Vimpat (what do you know about that?) or a couple others that I can’t remember the names of. I’ve been on Dilantin for about 45 years, so changing off of it is a scary proposition.
    Thanks for any light you can shed on any part of this.


    Comment by Maggie — May 14, 2013 @ 12:43 AM

    • Maggie, as a former Dilantin user (I was happy taking it) and now a Keppra user I thought I’d offer my 2 cents. First, you don’t want to be toxic on Dilantin. If you can’t achieve seizure control on Dilantin without being in toxic ranges, then in my opinion you do need to try another drug.

      However, ranges can be misleading, and if you are able to avoid side effects and maintain seizure control on dilantin, even if you are technically lower than the normal range, then your doc should be willing to listen to that as each persons response is different.

      Next, if you are already experiencing long term effects of Dilantin, and you are unable to achieve satisfactory seizure control, then again another drug should be tried.

      As far as Keppra goes, I have been on it for 2 years and have had no seizures (although I don’t have many very often). I have noticed side effects, mainly on sexual issues, along with fatigue, and brain fog, memory, etc. I have spoken with some people who have taken it for years without a problem.

      Unfortunately, everyone responds differently to each drug, and how you tolerate any particular drug will only be concretely determined by actually taking it. Phyllis may have other views on Keppra, but those are mine.

      That said, I’d get some blood work done on hormones, detailed thyroid, pituitary and adrenal function before the switch to establish as many baseline numbers as possible in case anything changes negatively for you, no matter which drug you choose to switch over and use. Hope that helps.


      Comment by Doug — May 14, 2013 @ 1:55 AM

    • Hi Maggie,

      I so sorry to hear about your situation. I’ve been there. I have JME and I am also on Dilantin (have been for 39 years now). I spent my first 20+ years dealing with morning toxicity nearly every day…no fun. When I first started on the drug I was put on 400 mg/day. After years of being toxic, I decided to take matters into my own hands. I went to my PCP and asked that he authorize me to have blood level taken every day for three weeks. As I got high readings, I would respond by cutting back 100 mg/day until the level started to crash below the therapeutic range, then I went back to 400 mg/day, and I again became toxic (roller coaster). Ultimately, I found that alternating 400 mg/day and 300 mg/day kept my levels between 18 and 21, and the morning toxicity has been gone ever since. My Rx actually reads “take 400 mg/day and alternate to 300 mg/day.” Maybe this would work for you. Incidentally, Dilantin didn’t do much for the myclonics so I now take 1,500 mg of Keppra. It was rough at first, but the side-effects eventually leveled off. Meds are a pain, but I’m glad we have them. Be strong and aware that there are lots of options. As in my case, I had to think outside the box to get it right; doctors are a resource to help. Unfortunately, it took “me” 20 years to figure out. You keep us informed, and hopefully we can collectively give you some good ideas.

      Be safe and God bless.



      Comment by Tom — May 14, 2013 @ 2:09 AM

      • Tom, did you ever mention adding a 30mg Dilantin pill to your normal 300mg to your doctor? It might be a good way to see if you can maintain seizure control and avoid toxicity, while avoiding any issues from going up and down with dosages. I used to take 2 100mg Dilantin pills and 2 30mg Dilantin pills daily for a total of 260mg. It posed me no additional issues, the pills are just a bit smaller..


        Comment by Doug — May 14, 2013 @ 6:56 PM

    • Maggie did u ever try Lamictal? It really seems to work ok for me and the side affects do not seem to bad… Sorry the dilantin is giving u them problems… I had it give me a problem when ny count got pretty low awhile ago because my count got really high and i couldnt even stat awake at all… But that was the only time and i been on it over 30 years here!!!! When that happened from my dilantin count getting really high after they upped it to 100 mgs for a week i really fely horrible.. I didnt know what was wrong so i went to the ER after 3 days feeling really tired and i had no energy at all… I was even falling asleep sitting at the table but besides that i always been good on it… I had u have better luck on it… But if u never took LAMictal ask your doctor about it the side affects do not seem bad at all….


      Comment by Ron — May 15, 2013 @ 12:06 AM

      • This damm phone lol sorry it was 1000 mgs a day for a week not 100… When they upped it to 1000 a day for a week was the only problem i ever had… Damm buttons on this phone are just to close… But like i said ask your doctor about lamictal…. Hope you have better luck on dilantin but not every pill is made for everyone….


        Comment by Ron — May 15, 2013 @ 12:11 AM

      • One more vote for Lamictal. It’s been my saving grace along with Klonopin.


        Comment by Phylis Feiner Johnson — May 15, 2013 @ 10:50 AM

  109. This isn’t exactly related, but I know for me with Effexor, the dosage at night made me crazy hyper. So, I just decided — with doc’s approval — to take it all in the AM.


    Comment by Phylis Feiner Johnson — May 14, 2013 @ 7:16 PM

  110. I am back on dilantin here 500 mgs a day… Im done with keppra here.. lamictal has has way less side affects and works better for me… 200 mgs of lamictal a day im on and 500 mgs of dilantin… I still get seizures but not as many as i did on keppra… And the side affects r way better than keppra was….


    Comment by Ron — May 14, 2013 @ 9:55 PM

    • Good for you Ron! Glad you’re feeling better. BTW, you may have said this already, but have you experienced in other issues from your long term Dilantin use, like bone loss or thyroid issues?


      Comment by Doug — May 15, 2013 @ 2:13 AM

  111. Hi, everything is going perfectly here and ofcourse every one
    is sharing data, that’s really good, keep up writing.


    Comment by heart attack prevention — May 15, 2013 @ 8:23 AM

  112. Glad to hear everything is going well for you and that you’re finding Epilepsy Talk to be of help.

    If you’d like to subscribe to Epilepsy Talk and get the latest articles, go to the bottom box of the right column and click on “Sign me up!”


    Comment by Phylis Feiner Johnson — May 15, 2013 @ 11:13 AM

  113. Not as far as i know… I have had no thyroid problems or bone problems… Only thing has been my folic acid problems… So i take folic acid to help out with that


    Comment by Ron — May 15, 2013 @ 5:29 PM

    • Good for you. I’ve been apprehensive about switching back to Dilantin, and it helps to speak to someone with all those years of experience with the drug that has done something similar.


      Comment by Doug — May 16, 2013 @ 4:22 PM

  114. Doug, FIVE hours away and waiting THREE months?

    Sounds like a lose-lose to me.

    Just give the Dilantin a shot…


    Comment by Phylis Feiner Johnson — May 16, 2013 @ 5:46 PM

    • Thanks for the advice.. I am concerned about why my testosterone suddenly dropped 300 points in the last few months though.. Urologist couldn’t figure it out.

      My fatigue level (always there on Keppra) has gotten much worse the last month or two. I was always a runner (used to do 5 miles no problem) and today I could barely run for 10 minutes.. Just exhausted.


      Comment by Doug — May 16, 2013 @ 10:24 PM

  115. I might be willing to see another Doc (neuro, urolo, or other..) before trying to switch back to Dilantin, IF they could do one of two things..1. Be able to tell me if Dilantin has caused my issues, and therefore be able to articulate why I should not go back to it. Or, 2. tell me if some other issue is the problem (thryoid, adrenal, or whatever) by doing some comprehensive testing or at least showing a better understanding of how the seizure drugs effect the body.

    If they can’t do those things (or if it is just not possible to know) then my guess is they would just try to prescribe me something else, like hormones, etc. In that case, I’d probably just be better trying the dilantin again and seeing what happens. And, if that didn’t work, then and only then, consider some other treatment.

    Phylis, does anyone think either of those things are answerable, and it is just a matter of me finding the right doctor? Or, is it unknowable, and I should just go with the Dilantin and hope for the best?

    I realize I may be lingering over this decision, but I just am afraid I could make a bad situation worse, if Dilantin was actually to blame and then I go back to it..


    Comment by Doug — May 28, 2013 @ 6:15 PM

  116. I think you should start with a baseline BEFORE Dilantin, with follow-ups once you’re titrated up to your expected level.


    Comment by Phylis Feiner Johnson — May 28, 2013 @ 7:08 PM

  117. Hi… I was wondering how u r doing DOUG and Phylis…. I am doing way better here… Lamatical and dilantin are the right meds for me here… Not really any problems here at all and i been doing pretty good… Still getting seizurez but not really to bad it hasnt been… I used to get about 14 a month now im down to about 7 or 8 i been averaging…


    Comment by Ron — June 4, 2013 @ 6:31 PM

  118. YAY Ron! That’s great news!

    I got a positive bill of health from my neurologist today — despite the concussion.

    He was really pleased with my progress.

    So, I guess we’re on a roll! 🙂


    Comment by Phylis Feiner Johnson — June 4, 2013 @ 7:45 PM

  119. Phyliss good for u thats great to hear… Anything possitive when it comes from a neurologist is always a good thing!!!!!


    Comment by Ron — June 5, 2013 @ 12:03 AM

  120. Thanks so much Ron for your caring!


    Comment by Phylis Feiner Johnson — June 5, 2013 @ 8:13 AM

  121. U r welcome…


    Comment by Ron — June 5, 2013 @ 8:34 AM

  122. Ron, thanks for asking. I’m sort of in a static mode right now. I’m caught between decisions on whether to go back to Dilantin or stay with the Keppra and go to more docs for other opinions. Docs tend to refer you to other docs, and I am afraid of choosing wrong and having things get worse, so those two things combined have me stuck at the moment.

    Ultimately, I have to either hear some other treatment option or go back I guess, but I may see another specialist first and possibly a friend who is more of a holistic naturopath to see if he has anything to add about side effects and how my body is responding.


    Comment by Doug — June 7, 2013 @ 11:15 PM

  123. I have been having seizures since the age of 8 and now I’m 29 I have been on all types of medication and currently I am on Dilantin and it is scary my gums are swollen really bad two of my tooth chipped from no where and I don’t even eat candy I have very lid migrains all the time. Now I haven’t had a seizure in the past 9-10 years and I want to get taken off of medicine in general especially Dilantin is this possible because I asked a few people and they said once you are on Dilantin you can never come off. I sometimes can go a week maybe more before I start feeling weak frim taking the medications is there help for me??


    Comment by bianca sims — June 12, 2013 @ 8:18 PM

  124. Gingivitis — gum disease — is often a side-effect of Dilantin. That makes for very soft and decaying gums.

    My dentist cleans my teeth 4 times a year!

    I went off Dilantin. There are many people who either change AEDs or stop taking AEDs.

    But, please tell your neurologist — not only about your gums.

    Most importantly, your migraine problem must be discussed.

    This article may help explain things:

    Epilepsy & Migraines — Kissing Cousins



    Comment by Phylis Feiner Johnson — June 13, 2013 @ 8:15 AM

  125. I had a grandmal in my sleep… After a week of pain i went to the ER… I broke a rib they said… Its tough to breatrh or anything… Its just the way it goes… Thats the chance when falling in your sleep… Injuries are going to happen every now and than… But im sticking with my dilantin and lamictal it seems to work the best for me with less side affects rhan anything i have ever taken,,,Over 30 yrars of Dilantin… Im happy with it and the side affects have never gave me much of a problem…. Injories are going to happens its just a chance everyone takes when falling even football players fall and get hurt… Never give up and always think possitive


    Comment by Ron — June 16, 2013 @ 6:20 AM

  126. Ron, your attitude and courage are an inspiration to us all.

    I wish there was a way to fix broken ribs, but unfortunately, not.

    Here’s an article about a football player’s injuries that you might find interesting.

    A Fallen Football Hero



    Comment by Phylis Feiner Johnson — June 16, 2013 @ 5:47 PM

  127. Phylis thanks i will have to check that out…. I know they can’t do anything for broken ribs… I would take this anyday over that kidney stone pain that really sucks… After going threw that 3 times… I am doing good here… I always think possitive one thing that helps me is my 2 daughters that are healthy and they dont have anything wrong with them…. Thats one thing that always scared me is having a kid because i didnt know if they could have problems with me being on dilantin for all these years… And a day like today even makes it better at being so proud of my two sweet hearts… They are 16 and 14 and they both got my looks 2… Phylis im more than proud and wont ever give up… PPL like u ppl on here help lots of ppl and give them lots of confidence… I have always been a fighter and always will be here…. Having epilepsy has even made me more proud… Always stand tall and proud folks and never give up life is to short to not live it at the fullest that u can… Because we can be here and gone just like that… Damm lighting can hitt anyone and that can be the end…. Keep that smile and be as proud as u can be


    Comment by Ron — June 16, 2013 @ 7:33 PM

  128. Lightning can strike anyone and that could be the end that fast…. damm phone lol these buttons r just to close lmao… Be proud and never give up


    Comment by Ron — June 16, 2013 @ 7:36 PM

    • Your pride and love for your daughters certainly shows through. Just as your courage does.

      They’re lucky girls. (Not JUST because they’re healthy.)

      To have you as a role model, is a gift.

      And you’re right.

      Nobody knows what the next day could bring.

      You could struck by lightening.

      Or you could be unfortunate enough to have MS, Parkinson’s, Cerebral Palsy, Alzheimer’s, Diabetes.

      (My beloved cousin died at 59 from Stage 1 Diabetes which wasn’t diagnosed until he was 13. It was horrid watching his feet, then his legs, etc. being chopped off, one by one.

      (He’s been dead for 5 years and I still can’t say his name without crying!)

      I’m grateful to be alive. (I almost died in 2008.)

      And I went into a coma in 1969 from toxic levels of Dilantin.)

      So, yes, things could be a whole lot worse.

      Sometimes, people forget that.


      Comment by Phylis Feiner Johnson — June 16, 2013 @ 8:12 PM

      • I was on Dilantin for 40 years with Depakote and was doing find until 9 years ago when I had neuropathy, and numbness in my fingers. I was never told the amount of side effects of these drugs until after my son had a brain tumor at the age of 4 and just happen to get an insert for Dilantin saying it could cause brain tumors in babies. Luckly he is still with us after 6 brain tumors and he is 37 but he is having problems when had radiation for his first tumor. He just had his thyroid taken out because of the radiation but he saw the Drs. yesterday and so far he is doing better. Why I got off of Dilantin and Depakote was I mood changes and hallicating and was in the hospital for 2 weeks. I had to learn to walk again and try another pill but Limictal didn’t work for me. I’m now on Keppra 2 times a day, Onfi, and Fycompa but I’m still having seizures, can’t drive for 8 years. and they got rid of me at work and I do want to work! Now they are doing genedic testing because my grandson had 2 seizures, plus my son has seizures also but they think that is because of his brain tumors. I wish they could find something to help us all.


        Comment by Diane Lueders — July 22, 2016 @ 4:28 PM

      • Wow, Diane what a heavy load you’ve been carrying — for everyone. I think genetic testing will give you a clue about the cause, but it still doesn’t help with the painful effects.

        Have you considered other treatments? Like the Vagus Nerve Stimulator? “Vagus Nerve Stimulation…Is it for YOU?” https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/

        Or Responsive Neurostimulation? “Responsive Neurostimulation (RNS) Shown to Reduce ‘Untreatable’ Seizures”

        Really, I don’t know how to solve your dilemmas, this is just a shot in the dark, but maybe it can help take you down another path.


        Comment by Phylis Feiner Johnson — July 22, 2016 @ 5:25 PM

  129. Phylis u r so right about the other health problems out there… My friend is a diabetic and lost his leg 2 months ago they removed it right below his knee… And he is only 41 years old… He got his artifical leg now and is doing good… I spent many nights helping his mother out with him because she couldnt push him around in his wheel chair… If i can give a hand with anything i always do… Being unhealthy is tough but it is all about being tough and standing as proud as any one else… I have had ppl put me down over my health problem and i just say oh well dont like what u see look the other way…. Never ever get down no matter what and fight until the end…


    Comment by Ron — June 16, 2013 @ 8:16 PM

  130. Phylis im so sorry to hear that about your cousin… I bet he was a good hearted person too… For some reason it seems like all the good hearted ppl always seem to go threw more than these others ppl that have no hearts at all… I know its tough my brother who died at 23 really made me stronger… It was suicide and i know we have all wondered why… He was a great guy who never put me down and alwayy made me feel proud… It still bothers my entire family and it was a long time ago back 91… Life can be tough but thinking possitive is something everyone needs


    Comment by Ron — June 16, 2013 @ 8:23 PM

    • As Billy Joel so eloquently put it: “Only the good die young.”

      It must have been devastating to lose your brother at so young an age.

      By suicide, no less.

      And it must have taken so much courage to deal with that and move ahead.


      Comment by Phylis Feiner Johnson — June 16, 2013 @ 8:45 PM

  131. Phylis that is so good you lived because there r not many ppl that make others proud like you… I know you have helped me alot even though i always have been… My level got real high once to and it sucked i couldnt stay awake… I was falling asleep sitting up even… Only other thing is my folic acid count gets low sometimes… So i take folic acid… Dilantin is my favorite maybe because it has helped since day one when i was 3 yrs old… I never really had to many problems with it… I tried others before dilantin and they just never seemed to work as good as this has… So glad there is a web site like this where ppl talk and know how it goes because they are going threw the same thing…


    Comment by Ron — June 16, 2013 @ 8:37 PM

  132. Yup. We’re here to support each other, help one another, lend a caring ear and, if we’re lucky, help solve some of each other’s’ problems


    Comment by Phylis Feiner Johnson — June 16, 2013 @ 8:47 PM

  133. When i 1st starting seizures i was put on Phenobarbatol-IT NEVER WORKED. Put on DILANTIN-HERO-#1. New Dr. comes along,changes meds to KEPPRA-SEIZURE-1st one in very long time. Since seizure occurred,i lost my job as a Professional/Licensed Auto Mechanic w/all Licenses and Certifications. Dr fills out paperwork to remain working as MECHANIC-BUT-LIKE an IDIOT he sends PAPERWORK to EMPLOYER INSTEAD of Dept. of Transportation,i end up losing job/career,STILL NO DRIVE. ANYBODY w/ASSISTANCE,PLEASE RESPOND. ED


    Comment by Ed — July 18, 2013 @ 8:11 AM

  134. Hi Ed,

    Pheno…Dilantin, pick your poison. They both stunk. But those were the only options back then.

    Take a look at this article:

    Epilepsy and Employment


    According to the EEOP (Equal Employment Opportunity Program), if your doctor sent your BOSS the papers for you to remain working as a mechanic, then your boss is obliged to put you in a job as a mechanic.

    Or, reassignment may be necessary if you as an employee with epilepsy, can no longer perform your job — with or without reasonable accommodation — unless the employer can show that it would be an undue hardship.

    The new position should be equal in pay and status to the your original position, or as close as possible if no equivalent position is available. The new position does not have to be a promotion, although you should have the right to compete for promotions just like other employees.

    If you feel that you have been fired or demoted because of your epilepsy (and your company’s Human Resources Department is not able to help), think about seeing a lawyer. In many places, this kind of legal assistance is available at low cost.

    Your first step should be to become informed about the relevant laws and the restrictions about disability discrimination. (It may be helpful to speak with a representative of your local EFA Chapter.)

    You could also speak with the protection and advocacy staff of the state human rights commission, the Equal Employment Opportunities Commission (EEOC), or a social worker who specializes in employment issues.

    The ADA (American with Disabilities Act) applies to all employers, employment agencies, labor organizations, and joint labor-management committees in which at least 15 employees work for each working day in each of 20 or more calendar weeks.

    So, read the article, call your local EFA (they’re all too familiar with this problem), and take it from there.


    Comment by Phylis Feiner Johnson — July 18, 2013 @ 9:10 AM

    • The strange thing is that Dr. filled out EXEMPTION PAPERWORK for me to remain work as Mechanic,keep MECHANIC LICENSES-only he sent them to EMPLOYER instead of Dept. of Trans.(Penndot);Penndot is the 1 and only 1 who can issue the exemptions. I have copy yet. Since i was no longer able to perform STATE INSPECTIONS i was replaced. I filed for Unemployment but was DENIED,Employer said i quit no reason. I appealed,won Unemployment,Employer shut down. Remain seizure free,Dept. of Trans. keeps sending me paperwork to have filled out to obtain Drive License back-ONLY Dr. wont fill them out-?? If i was to keep having seizures i would think Dept. of Trans. would be notified-?? They say ok to Drive,just need paperwork fill out. Other STRANGE thing-applied for DISABILITY and TURNED DOWN,see lawyer. Lawyer filed paperwork and response back is that i am capable of doing everything before,maybe not as fast since being out of work for this time. I still do MECHANIC work on side at home here. I just dont know where/what to do now. Disability say I can do simple things/follow instructions,dont show any signs of DISABILITY-WHICH is 100% TRUE. My oe Dr. is the 1 who got me started as mechanic in my early 20s,when new Emission Program came out all the older,long time Mechanics dropped out instantly,half the class go school w/drop out also. I was/still am? certified. HAVE 2yr COLLEGE ASSOCIATE DEGREE and 5+ certifications. I feel it all Dr. cause TROUBLE. There have been no signs of any problems cause epilepsy after numerous,numerous tests have been done. I am at loss now? ANY of your or anyone elses ADVICE would certainly most greatly be accepted. THANKYOU ED


      Comment by Ed Hricak — July 18, 2013 @ 10:43 AM

    • THANKYOU for KIND RESPONSE. Dilantin has been only Medicine that has helped,all w/no problems. I even had some test done where a NEEDLE was put up my spine to access fluid,had to lay 1000000%still. No problems found w/infections. I feel it is all 100% stress-worked sooo many yrs,never taking sick days,vacation days 1day at time. Last employer,1who got rid me,used to take Fridays off,leave me w/controll of SHOP,nothing MAJOR;I was allowed all STATE INSPECTION STICKERS and MONEY to bill out customers. TODAY-I being told i TOTALY DISABLED?? I cut grass,i go for walks,i do carpentry-PUT NEW ROOF on my GARAGE,BUILT NEW SHED in my YARD. THIS SHED built off top of head,no plans. It so awesome (just basic 3 walls,roof and Door) that all neighbors wanted to know where i BOUGHT and HOW$$ PAID. ED


      Comment by Ed Hricak — July 18, 2013 @ 11:04 AM

      • Well, maybe you should consider carpentry as an option. It seems like you have many talents.

        Put on your thinking cap and figure out a way to USE them!


        Comment by Phylis Feiner Johnson — July 18, 2013 @ 4:49 PM

    • Hi Phylis,THANKYOU for kind response. My OE-1st Dr. started me on Phenobarbital but it didnt seem to be effective?,i was switched to Dilantin and a New Dr. came in; all was GREAT till Dr. retire and new Dr. come in;i was switched off Dilantin to Keppra but didnt seem to agree/be ok,seem to cause seizure?? Dr. put me back on Dilantin-all was GREAT,until Dr. started changing things around-not sure why?? I was working very good career-Certified/Licensed Auto Mechanic w/all certifications/Licenses. Put on Keppra which did not seem to agree-caused 1st seizure in years. Back to Dilantin and w/exception of “Enlarged Gums” i was fine. Dr. screwed around again,tried putting me on different med??-caused seizure. Since i needed Drive License to remain work(??)as mechanic i had Dr. fill out EXEMPTION FORMS(required) to remain work as mechanic. Only Dr. SENT FORMS to EMPLOYER INSTEAD of Dept. of Trans;Address/where to send to listed at top of FORMS very CLEARLY. WHy SENT HERE?? Since my job requires Drive License to Hold Inspection Licenses Employer hires 18yr old to start/work w/me. Kid had no MECHANIC LICENSES/CERTIFICATIONS. Soon afterwards I AM PERSON who went bye. Apply UnEmploy,former Employer tried stop say I QUIT. I appeal and won. Had another Employer lined up but when they saw my Mechanic Licenses and Drive License not valid -CHANGED MIND. EXEMPTION FORMS were filled out for me to KEEP MECHANIC LICENSES,but Dr. for some reason sent all to EMPLOYER instead of Dept. of Trans. Been trying for yrs to get straight out-NO LUCK-??. Re-apply for Disability,had 1st Hearing and DENIED: I am capable of doing all as before w/exception of Mechanic work to ISSUE LICENSES-even though Dr. SCREWED UP(have copy FORM that was filled out by Dr and signed by me and Dr. saying ok to work as before. Correct Paperwork sent me to have Drive License return sent me several times,NEED Dr. to fill out his part and sign,then return to Dept. of Trans. As of today,Dr. wont fill out his PART-WHY?? I cant get answers. Otherthing/instead was to have EEGs done,as long as all come back ok-DRIVE LICENSE RETURN. I cant begin to say how many EEGs done-approx. 4 in a 6week period. Dr. gets results as all ok ,BUT STILL WONT RELEASE Drive License. Several job oppurtunities came up as Mechanic,but INSPECTION LICENSES REQUIRED(NORMAL TODAY). This where i stand today,dont know what/where else to go. As say,Disability DENIED since i capable doing alot,on my own. I just dont know what/where to go,had at least 2more oppurtunities for Mechanic but ALL LICENSES/CERT. REQUIRED-NORMAL TODAY. If you or anyone else can BE of ANY ASSISTANCE/RECCOMENDATIONS-PLEASE PLEASE FEEL FREE to HELP ME. THIS is the ONLY AREA/PEOPLE YOU CAN SPEAK w/WHO ARE SOOO KIND/HELPFUL,others may have been here at START? AGAIN,I REALLY APPRECIATE YOUR KINDNESS as well as anyone elses who have been/are in SIMILAR SITUATION. THANKYOU FOR YOUR KINDNESS. ED


      Comment by lckyedd — July 19, 2013 @ 11:07 AM

  135. Since your employer closed, it’s a moot point.

    I would get the proper documentation from your doctor and continue to freelance. (With liability insurance for safety in case you get sued.)

    A member of our website is an independent mechanic and he’s doing VERY well.


    Comment by Phylis Feiner Johnson — July 18, 2013 @ 4:41 PM

    • This is where i am having the problem,DR. wont release info. for some reason. As mentioned,i had approx. 4eegs done in about month half,Dept. of Transport say that all i needed-Dr. just wont send in proof that i had all done,wont let me go back to work. This where i stuck. ANYBODY who can provide assistance-PLEASE DO! THANKYOU ED


      Comment by lckyedd — July 18, 2013 @ 5:28 PM

      • It is your LEGAL right to see your records and take a copy of them under the Freedom of Information Act. (They may charge you a fee for the copies.)

        If he won’t cooperate, call the local EFA for assistance.

        They’re more than familiar with this problem.


        Comment by Phylis Feiner Johnson — July 18, 2013 @ 6:13 PM

  136. It was the second drug prescribed to me and it was a nightmare!It caused bleeding gums with swelling that needed surgery to fix leaving gaps between my teeth.


    Comment by Randall Mitchell — July 18, 2013 @ 6:16 PM

    • I got galloping gum rot, but fortunately, a dentist was able to rescue my gums.

      My also very long hair thinned to the point that I had to have it cut short! 😦


      Comment by Phylis Feiner Johnson — July 19, 2013 @ 10:42 AM

  137. I have been on Dilantin for 30 years and the worst that has happened is some gum overgrowth….

    my kids are fine healthy young men in their 20’s and neither have any birth defects….

    I think we need to remember that ALL medications have the possibility of horrible side effects and what may happen to one person…may not happen to the next…


    Comment by Beth N — July 19, 2013 @ 9:25 AM

    • Hi Beth,this is Ed. I too have been on Dilantin over 30yrs. Worst happen-GUM overgrowth. New Dr. tried switching me to keppra-SEIZURE!! Everytime i would miss 1or2 doses Dilantin minor seizure occur. New Dr. has prevented me from go back to work-FULLY LICENSED CERTIFIED AUTO MECHANIC 2yr Associate Degree in Business/Auto Technology. SOOOO much want to go back to work-DENIED DISABILITY-NOW WHAT?? ED


      Comment by lckyedd — July 22, 2013 @ 8:47 AM

      • Ed,
        I am sorry that happened to you- a number of times over the last 30 years I have been “unemployable” through the mainstream..so I used my skills as a teacher and a bookkeeper to make a living from home.


        Comment by Beth N — August 14, 2013 @ 12:16 PM

  138. Beth, glad to hear your side-effects were (kind of) minor.

    Happier to hear your kids are in good shape.

    And yes Beth, you have a good point. What’s good (or bad) for one, is not the same for all.

    Each of us is different with unique body chemistry.


    Comment by Phylis Feiner Johnson — July 19, 2013 @ 10:46 AM

    • Phyllis yeah I hear many horror stories in the groups I am in and they are from all the medications out there…it doesn’t seem to matter what the med is- it messes with something…for me…better the devil I know (so to speak)


      Comment by Beth N — July 20, 2013 @ 11:44 PM

  139. ICKYEDD… U do what best for u there… Im still kicking over 30 plus years on the pill i call the gramp of them all… Dilantin its the generic kind to im on here phenytoin… Lamictal i have been put on recently with the phenytoin…. Keppra did nothing for me at all… I had really bad mood swings and was so sore after 2 months of that i quit taking it on my own…. Really bad headache i always got to every time i took Keppra on my left side of my head…. My doctor was mad but i just told him oh well… Life goes on he told me if i ever quit taking anything again he would drop me and i said there are others out there.. I told him about the side affects and he didn’t really care… 4 grandmals i had from keppra dilantin never ever let me down that much… I average about 8 a month here… On Keppra it was like 8 a week i was getting… Ask your doctor about lamictal it seems to work ok for me with my dilantin… Dilantin i take 500 mgs a day and 100 a day for lamictal… Only problem dilantin has ever gave me is my folic acid gets low sometimes… So i take 1 folic acid pill a day here too… Never give up and stand your ground because there are lots of Drs out there believe me… Keep that smile on your face and always think of the good things… Us epilepsy people are like a family we all know whats its all about unlike others in this world… Since i been 3 i been having seizures and proud as can be i sure am to have to beautiful daughters… Who have no health problems at all


    Comment by Ron — July 19, 2013 @ 8:56 PM

  140. Beth… Thats so great to see you been on dilantin for that long… Like me and have had no really big problems with it… It has worked the best for me and im sticking to it… These new meds they really don’t know anything about them… Really these days its all about the money….


    Comment by Ron — July 19, 2013 @ 9:00 PM

    • Ron the way I see it…I am seizure free …so if I have to see the dentist more often so be it- no seizures makes me happy!


      Comment by Beth N — July 20, 2013 @ 11:43 PM

    • Hi Ron my name is ED,i too have been taking Dilantin for a very long time-over 30yrs. Each and every time i was switched to different med-SEIZURE occured!! My oe Dr. who started me and kept me on Dilantin-RETIRED. NEW Dr.-IDIOT-takes over,changes Med. to Keppra-SEIZURE!! I was working full time as Licensed Certified Auto Mechanic w/all Licenses. After seizure Drive License susp.(still),i need Drive License to remain work as Mechanic to keep Mechanic Licenses. Dr. IDIOT HE IS) fills out EXEMPTION FORMS so i can Remain work as MECHANIC and KEEP MECHANIC LICENSES. Problem here-Paperwork was sent to Employer instead of where it NEEDS to go. This caused loss of my career as MECHANIC. I have applied for Disability but was DENIED due to fact that i show NO SIGNS of DISABILITY,i can perform all work i did before-maybe not as fast till i get used to all. Dr. SCREWED UP HERE BIG TIME and i have soo much trouble try to get things squared away. ED


      Comment by lckyedd — July 22, 2013 @ 8:25 AM

  141. Beth thats great to hear… To bad i haven’t that kind of luck here to be free of these damn things… That years ago people thought a witch caused them… I was told i had a Family member many moons ago that was kept in the basement who had epilepsy… I had a doctor tell me awhile ago about removing my frontal lobe… That wont ever happen… I wont let happen no way… because in my book the brain is nothing to mess with… I believe the frontal lobe has alot to do with memory and other things… Phylis yep since i been taking one folic acid pill a day i been fine.. I didn’t know what was wrong i just was feeling really bad and tired… My doctor noticed it was my folic acid that was low… He said folic acid has alot to do with oxygen in the body and thinks thats why i was feeling tired because my body did not have what it should have had in it… He also said my body wasn’t producing my red blood count fast enough like it should have been because of the low folic acid i had then… And thats why i didn’t have enough oxygen and thats why i was feeling so tired… I was on 3 folic acid pills a day the first time it got low thats how low it was… I didn’t know anything about folic acid before it got low the first time… I never knew it was that important to the body before that… PHYLIS No i do not take any vitamin B maybe i should… Does that help alot? And yes any med might not agree with others like it does for some people… I can’t take penacilin because it gives me the hives so if i ever need anything they always give me amoxicilin….


    Comment by Ron — July 21, 2013 @ 3:29 AM

    • Ron, My last freelance job was 10 years of writing about Health and Wellness. So did Arthur.

      You wouldn’t believe the supplements Arthur takes, but I stick to the basics + a few more he insists on.

      Probiotics — which is for my digestion. Fish oil — for memomory (or “brain function”). And Coenzyme Q10 (taken with a meal) as a cell booster to combat weakness and fatigue.

      Ron, take a look at this nuritional article and ask your doc, if you have ANY doubts. (He’ll probably blow it off, if he’s of the conservative school.)

      Brain Food for Your Health…



      Comment by Phylis Feiner Johnson — July 21, 2013 @ 9:22 AM

    • Ron,

      It took 17 years to get to seizure free and there are still days I worry, but I also know that I cannot predict seizures, so I just watch for my triggers and do my best to make sure I get the rest I need. I am very thankful that my current employer (a farmer) is good about letting me take a rest during the day if I need and they are very understanding about how heat is bad for me…(makes me dizzy) and they always make sure that they keep coconut water in the house for me. (I drink it on those days I am dizzy feeling)


      Comment by Beth N — July 21, 2013 @ 9:22 PM

      • Coconut water, Beth? That’s a new one on me.

        Although, because of my husband (Health & Wellness ), I’m familiar with some of the attributes of coconuts.

        He uses coconut oil in cooking!


        Comment by Phylis Feiner Johnson — July 22, 2013 @ 6:16 PM

      • Phyllis yeah- coconut water- not sure why but on my dizzy days it works better than anything else!!


        Comment by Beth N — August 14, 2013 @ 12:20 PM

      • Seems like my Biggest triggers-STRESS. Lost Job as Auto Mechanic since Drive License Suspended(thanks to Dr. put me on wrong Med). After contacting Dept. of Transportation several times about getting License restore-say get LAWYER NOW-finally getting headway,CONTACTED GOVERNOR. Ed


        Comment by lckyedd — August 15, 2013 @ 11:11 AM

  142. Years ago when i was younger they had me on valium 5 mgs a day to… Im so glad to get off that when i was younger because it is very addicting… But back than i don’t think they knew that… Thats why i hate going on new meds that they really don’t know anything about in the long run… Anti depressent pills are not for me because i don’t let myself get down… Damm its not like this happened over night for me… Tell u all the truth i wouldn’t change the way my life is for anything… No way no how because of my 2 sweethearts that make me so proud… It has come a long way it has with epilepsy over the years… Years ago they didn’t even have a idea what caused it at first…


    Comment by Ron — July 21, 2013 @ 3:59 AM

  143. I do agree with you about anti-depressants and addiction.

    But I’ve been taking Effexor (clinical depression) for 12 years and it’s been a life-saver. (Literally!)

    But yes, I’m wary about new drugs, too.

    Let the others test them for three years and then, ok.

    Here’s a relavent — but horrifying article:

    Epilepsy Studies: True or False?



    Comment by Phylis Feiner Johnson — July 21, 2013 @ 9:45 AM

  144. I will have to check them out Phylis again thanks alot for that….


    Comment by Ron — July 21, 2013 @ 10:32 AM

  145. Phylis i dont know if i ever asked what state u are from…. Im from Pennsylvamia here…. The Wilkes Barre area….


    Comment by Ron — July 21, 2013 @ 10:36 AM

    • Hey, we’re almost neighbors.

      At least we’re in the same state!

      I live 45 minutes from Philadephia!

      But I know there’s an epilepsy support group somewhere around Wilkes Barre.

      See how much valuable information you get from being an EFA Support Group Facilitator?

      I’m not sure what means. I think it means that whenever someone has a serious question that can’t be answered by the doc or educational director, I get to research it! 😉


      Comment by Phylis Feiner Johnson — July 21, 2013 @ 6:08 PM

    • Ed, if you go to http://www.epilepsyfoundation.org/
      and enter your zip code at the bottom, you’ll find the closest EFA to you.


      Comment by Phylis Feiner Johnson — July 22, 2013 @ 9:30 AM

  146. The aricles were damm good again PHYLIS… Like they always are that u send


    Comment by Ron — July 21, 2013 @ 11:02 AM

  147. Thanks Ron. This is the hardest I’ve every worked and I’ve never loved a “job” more.

    It’s truly a labor of love.


    Comment by Phylis Feiner Johnson — July 21, 2013 @ 6:13 PM

  148. Oh, Ron. Do you want to hear something cool? (Way cool!)

    A man who works at Social Security emailed me and asked if he could write an article about Epilepsy Disabilities and put it in Epilepsy Talk!

    At first, I thought it was a scam. But no, he’s the real deal.

    “Hello Phylis,

    I came across your site doing a google search and it seems to be a useful resource for those with Epilepsy.

    I was wondering if I could potentially contribute by writing a guest post for your site’s blog on the process of applying for Social Security Disability with Epilepsy?

    I am contacting your from Social Security Disability Help, an organization that works to promote disability awareness and help individuals navigate the Social Security Disability application process.

    Please let me know if you have any questions.

    Thank you for your time and consideration,

    Ram Meyyappan
    Social Security Disability Help

    I almost dropped. But there it is. Coming soon to a neighborhood near you. On Monday!


    Comment by Phylis Feiner Johnson — July 21, 2013 @ 6:30 PM

  149. Damm thats really something to see Phylis wow…


    Comment by Ron — July 22, 2013 @ 2:39 AM

  150. Phylis i know the heat isn’t good for me here… So i stay inside with the heat wave we had here i stayed inside with the AC going…. I can tell sometimes if one is coming not all the time but sometimes i can… Sometimes a few days or the days before i feel really tired or seem to have a headache sometimes not all the time… When it comes to the dizzy thing i usually don’t get dizzy before i have one… Alot of times if i have one during the day… The grendmal kind i get in my sleep that night of a few days later… Sometimes the grandmal one i will have for a couple straigh nights… I hate the grandmal ones because i always wake everyone up with the big grunt sound when im having one… I get my rest because if i get one during the day i will even take a nap because i feel awful and very tired… When it comes to the diet thing i only eat once a day so i know nothing gets high with me like cholesterol or my sugar or anything… Thats how i always been when it comes to eating… I just can’t eat breaffast lunch and diner… If i eat lunch than i can’t eat diner… When it gets dark i don’t eat i just don’t like to eat anything before i go to bed…. My diet is pretty good i know everything is fine as far as i been told…


    Comment by Ron — July 23, 2013 @ 5:26 AM

    • Well Ron, the heat got the better of me. I was shaking so violently that I had to go to bed. It looked like I had St. Vitus dance!

      But I just can’t stay in bed.

      So, off I go with my lemonade, hoping for the best.


      Comment by Phylis Feiner Johnson — July 23, 2013 @ 8:19 AM

  151. I know there are a few people i have heard say they had when they were kids… But never had another one… My brothers X her neice never had one than they came out of nowhere when she hitt like 14… She was on pheno.. From what i heard they put her on keppra and she feels awful… But her doctor wont take her off it and she still has them… My one neighbor her brother has like 4 a day… He cant really go anywhere she said and he is around 30 … They can’t get his under control at all…


    Comment by Ron — July 23, 2013 @ 5:37 AM

  152. Well, Keppra isn’t the only drug in the world. Can’t your bother’s niece try something other than Keppra?

    Have her keep a diary of her actions and reactions and take it to the doc so he/she can see what’s going on.

    Maybe that will help them understand.

    As for your neighbor’s brother, has he considered anything other than meds? A VNS, TNS? Here’s an article with several other options:

    From AEDs to Surgery and Beyond…Some Options Explained



    Comment by Phylis Feiner Johnson — July 23, 2013 @ 8:37 AM

  153. Phylis i don’t think my neighbors brother… Will ever get his under control at all because he had a head injury… When he was in like 5th grade… And has had them since…. As for my brothers X her neice… I told her to tell her to just quit taking it on her own… Thats what i had to do to get off kepra… Some doctors think that side affects will go away after weeks of having them… The thing is..Some doctors don’t think how horrible it is to go threw that feeling that horrible…


    Comment by Ron — July 24, 2013 @ 12:07 AM

    • Ron- mine comes from a TBI- a massive one…control can be possible – not always..but it can happen


      Comment by Beth N — August 14, 2013 @ 12:23 PM

  154. Well, there still is some hope for your neighbor’s brother — brain surgery. If he has the courage.

    As for your brother’s niece, try not to be doctor.

    If she does go off Keppra (as you were smart and brave enough to do), make sure she titrates down slowly and doesn’t quit cold turkey.

    She may not have the same resistance as you.


    Comment by Phylis Feiner Johnson — July 24, 2013 @ 9:48 AM

  155. Phylis i know my neighbors brother,, would have to let his mother make the decision because he can’t make decisions on his own anymore… I quit keppra the way i did,, Because i knew from being on dilantin a long time.. That Keppra was doing nothing for me but making me feel awful… The doctor at the ER even agreed with me about KEPPRA… He said some people can get really depressed and have alot of other problems on it… And told me if i was having that many side affects to stop taking it… I quit taking it 2 days before i went to the ER… I was even agruing with the nurses and the doctor when i first got to the ER… Never do i get like that plus the other side effects really sucked i had from it… I cant believe i gave the paremedics a hard time like that even the cops i argued with lol thats not me… Really my doctor did not know what to say after another doctor told him i can’t take it… He got mad with me a few days before that happened when i seen him and told me i better not stop taking anything again.. They gave me something at the ER i know it was klonipin and something else that counter acted with the keppra… Within 20 minutes i was really nice and telling everyone i was sorry for being that way… I know the doctor was laughing at the ER because i even told the cleaning lady i was sorry lol… All the nurses i did too there… My blood pressure was really high then it went down it was 152 over 110 if it didnt go down they were going to keep me… He was worried about a possible stroke he told my family… My brothers X her neice just started taking meds a few years ago so i think she affraid to stop meds for it… I knew Keppra wasn’t for me that is for sure after being on dilantin over 30 years and never really having really trouble at all….


    Comment by Ron — July 24, 2013 @ 9:12 PM

    • Was it the Keppra that sent you to the ER?

      Dr. #1 — Egomaniac. Dr.#2 — Realist.

      Ron #3 — Listen to your body.

      As usual, your intelligence saved the day.


      Comment by Phylis Feiner Johnson — July 25, 2013 @ 8:25 AM

    • Klonipin-anybody provide info.? On Dilantin over 40+yrs,go off-SEIZURE!! ED


      Comment by lckyedd — July 25, 2013 @ 9:47 AM

  156. I’m on Klonopin and it’s been very helplful as an anti-anxiety med. I’ve been on it for 5 years. No side-effects.

    “Klonopin (clonazepam) is used to control seizures in epilepsy and for the treatment of panic disorder.”


    Comment by Phylis Feiner Johnson — July 25, 2013 @ 12:11 PM

  157. Yep it was the keppra.. Thats what i was having problems with the side affects… The doctor said at the ER that some can’t take it and thats why my blood pressure was that high… I could have had a stroke he said with it being that high my blood pressure is always like 100 over 90.. It was klonipin and something else they gave me that counter acted the keppra… My doctors attitude changed when he was told by the ER doctor i cant take it… Because a few days before that is when i told him i quit taking it and said if i do that again he will drop me… The ER doctor said some people can get really mean on keppra and thats how i was that night… Plus he said it must not be working if i had 4 grandmals in 4 hours… I told them dilantin is what im going to stick with and he said if it works stick with it… He was the one that told my doctor try lamictal and so far no side affects at all here… It seems to work good…. I will stick with lamictal and dilantin here… Feeling way better than keppra made me feel with that combo… Lots can’t take keppra that ER doctor told me alot of people have lots of side affects to it


    Comment by Ron — July 25, 2013 @ 1:30 PM

  158. Really it was 4 grandmals in like 2 and a half to 3 hours hours not 4 hours that night


    Comment by Ron — July 25, 2013 @ 1:33 PM

    • Yay lamical! Yay Klonopin!

      If your first doctor “fired” you, it could be the biggest favor he could do! 😉


      Comment by Phylis Feiner Johnson — July 25, 2013 @ 5:22 PM

  159. The ER doctor told me who knows from being on dilantin for this long… I might not be able to get off it… My body is use to it and its a possibility i will have to stick to it… But he said if it still works ok than there is not really much to worry about… But he told me alot of people have problems with some meds and some dont… But he said he has seen alot of problems with keppra… He asked my mother if i was on keppra that was one of the first words out of his mouth she said… And he said ok thats what it is after she told him.. After he asked how long was i on it… He has seen alot of people the way i was from trying to go on keppra… So he did what he did with the klonipin and the other med he gave me and said i should be fine soon and sure enough i was… My blood pressure came down fast to…. After about 4 hours there i was on my way home


    Comment by Ron — July 25, 2013 @ 1:51 PM

    • Sigh, if it’s not broke, don’t fix it.

      Dilantin works for you. Why screw around with Keppra? Just because your doctor likes it?

      From what you say, he knows NOTHING about you or your body.


      Comment by Phylis Feiner Johnson — July 25, 2013 @ 5:25 PM

      • THANKYOU for UNDERSTANDING-THANKYOU.  FINALLY SOMEONE WHO UNDERSTANDS. As said,DILANTIN WORK PERFECT for ME,if i am switched to another DRUG-SEIZURES!! How about this: Dr. wont let me return to work,still no Drive,been through at least 4 EEGs no problems. Dept. of Trans. want proof EEGs done to restore license-ALL DONE and STILL NO DRIVE.  File for DISABILITY-I am not considered DISABLED,UNABLE to COLLECT any$$. I paid in why cant i collect?? What happen when i turn 65(turn 50 in few weeks)-will i be told i am unable to collect any$$. WHATS WRONG w?THIS COUNTRY???   ED



        Comment by lckyedd — July 26, 2013 @ 9:24 AM

  160. Keppra can even cause strokes thats why he was worried about my nlood pressure being high… He said it can make a persons blood pressure get really high… If it didn’t come down they were going to keep me there… He said he has seen a few strokes from it because of high blood pressure


    Comment by Ron — July 25, 2013 @ 1:55 PM

  161. I had 2 heart attacks from Wellbutrin.

    It was not a pretty sight.

    Because it was time release, they thought that they had gotten me over the hump, until a whole new cascade of seizures started.

    So, they induced a coma and there I was in ICU for 5 days.

    Then rehab. It was awful. 😦


    Comment by Phylis Feiner Johnson — July 25, 2013 @ 5:30 PM

  162. Phylis really damm that sucks to hear that… I bet rehab was a pain in the rear… Good thing is i don’t think u r having any heart problems over that… Thats a good thing


    Comment by Ron — July 26, 2013 @ 9:18 AM

    • I went to the cardiologist and all is fine. And I went to the endocrinologist and things were ok there, too.

      I’m one of the lucky ones!


      Comment by Phylis Feiner Johnson — July 26, 2013 @ 9:59 AM

  163. EDD i can’t get a license at all… I had social security the case worker i had… Tell me i should not even mow the lawn… Well i pretty much told them what i thought… Because im sorry but im am not becoming a coach potato here… The doctor they sent me to see was one of their doctors… What a winner he was… Big attitude he had… When i seen him he said u don’t have artirtis… He flat out said u walk good … I told him who the heck said i have arthiritis… I told him im not here for that… I more less told him whwere to go… Its tough today really tough to get anything from this gov anymore… This country is something anymore… They worry about other countried more than their own i think… I mean damm we got people that ciome here from other countries who get everything handed to them… If we went to their country believe me we would get nothing… Really it is something the way our gov works… If a hurricane did damage in any country they would donate millions but not here these days… Then they wonder why our country so called gets in debt… It sure isnt because of helping there own country out in my book its because helping these other ones out… That wouldn’t give us a dime… Like i said ppl from other countries come here they have everything handed to them medical free rent food stamps and everything else… Even tax free they are here


    Comment by Ron — July 26, 2013 @ 9:42 AM

  164. U.S. National Debt — In Real Time



    Comment by Phylis Feiner Johnson — July 26, 2013 @ 10:24 AM

  165. Phylis my moms vet.. Has a son who has gone to college in LONDON and he told her he is not coming back here… Because the people there are way more happy… I know my moms vet is upset she told my mom she is going to see him… It is a 9 hour total flight to get there she said… Im not taking this room out of dilantin talk… I was just making a comment to EDD on how tough it is to get anything these days… Epilepsy is all over the world and everyone of us with it are all fighters who never give up


    Comment by Ron — July 27, 2013 @ 12:01 AM

  166. EDD never give up and just try to think possitive…. I know it is tough… But living with any health problem is… Those who stand tall and proud… Are the ones that have a way better life… Edd stick to Dilantin if it works than the heck with the others for you… I am doing the same here… If your doctor gives you any trouble with anything go get a second opinion… Some doctors seem to care more and understand things way more than others… Because soom doctors are pill pushers in my book who seem to not care… I hope everything is going to go good EDD just give it a little time and if you are seizure free for so long… You should be fine…


    Comment by Ron — July 27, 2013 @ 12:16 AM

  167. Listen up to Ron. THAT is the voice of wisdom.

    Thank you Ron.


    Comment by Phylis Feiner Johnson — July 27, 2013 @ 8:37 AM

  168. Ed how has it been going? Ok here not to bad this week only one small one i had.. But i have been really tired out… My friend who lost his leg, im going to help next week… His gfs dad does not have much time left… She is from philly and going there next week… A gd friend always gives a hand… I hope everyone on here is hanging strong and tough and never gives up…


    Comment by Ron — July 30, 2013 @ 5:53 PM

  169. No im not going to Philly… My friend who lost his legs his GF is… So im going to my friends to help him and his mom out there…. I don’t know where she is going to in Phiily i know her dad has cancer and does not have much time left… So she is going there to see him and her family… Thats where her family is she was raised in pgilly…. She is leaving on Monday


    Comment by Ron — July 31, 2013 @ 6:15 AM

  170. My misunderstanding. My loss. 😦


    Comment by Phylis Feiner Johnson — July 31, 2013 @ 9:58 AM

  171. Phylis that happens np at all…


    Comment by Ron — August 4, 2013 @ 3:37 AM

  172. Well Phylis i sure am not going anywhere… What a bad week it sure was here… I had a grandmal and my mom came to check on me… I was by the steps in the hallway… After i got alert i heard my mom asking for help downstairs… She has vertigo i think that is how thats spelled… Well anyway i heard her asking for help… She fell down the steps… I went down stairs and she was on the floor and could not get up… In lots of pain she was… So anyway i called a ambulance and got her to the hospital… Here she broke her damm pelvic bone… Damm i feel so bad… Because if i didnt get her up.. It would have never happened… All i can do now is hope for the best because i know breaking a pelvic bone,, can cause lots of problems forever that never go away!!!! She is in the hospital now… Im hoping she doesn’t end up with nerve problems or other problems now… From what the doctor said its not a big brake


    Comment by Ron — August 4, 2013 @ 3:54 AM

  173. My heart goes out to you Ron. But don’t despair yet. I know many people (mostly old) who break their pelvic bone and come out fine.

    She probably will need some rehab after the hospital. But in the end, my guess is she’ll be ok. (My 88 year-old aunt just went through the same thing.)

    And don’t beat up on yourself. After all, it wasn’t like you WANTED to have a grandmal!

    Sending comforting hugs your way…


    Comment by Phylis Feiner Johnson — August 4, 2013 @ 10:44 AM

    • I been real busy i haven’t really been on to much… The last 2 days i have been at the nursing home… She is doing so so with the rehab part im thinking probably 3 to 4 week she will be there… I know she has to see a bone specialist on the 21st… The doctors i know have said they want to get her a little stronger before the biopsy thing… Thanks alot with the hugs things… I will keep u up on everything …. One good thing is i know she put a few lbs on thats always good to hear… She has always been thin now she goes like 130…


      Comment by Ron — August 7, 2013 @ 8:00 AM

  174. Thanks alot phylis…. You are right she had rehab,, thats where she is now… After the rehab they told her they want to do a biopsy test… Because they are saying they see a few things on her ovaries and her one lung… Hopefully it is not what it what i think it can be…


    Comment by Ron — August 6, 2013 @ 5:18 AM

    • Ron, it’s going to take much longer than a month before your mom gets her “sea legs” back.

      When do you expect to see the bone dotor? And what about her ovaries and lungs? They’re surely not going to wait until then, are they?

      Please speak up to the docs. Be her advocate. She needs one. And if anyone is up to the task, you’re it.

      Try not to let your imagination go wild. (Easier said than done!) Be strong. For her.

      I’m behind you all the way. My private email is pfj@pfjonson.com and I want to hear what’s going on.

      I’m behind you all the way.


      Comment by Phylis Feiner Johnson — August 7, 2013 @ 9:54 AM

  175. Oh by the way phylis they dont believe vertigo caused it… When she fell they are saying it looks like a small stroke caused it… Her right side is not as strong as her left… Thats her stronger side to because she is right handed…


    Comment by Ron — August 6, 2013 @ 5:23 AM

  176. Whew. Glad to hear it was a small break and she’s in rehab already. Not surprised to hear it was a mini-stroke.

    One bright note: if she hadn’t been taken to the hospital, you might not have ever known about the stroke part.

    So now she can have rehab that’s beneficial to both her hip and the stroke affected side.

    As for the biopsies, my fingers are crossed. When is she getting them?


    Comment by Phylis Feiner Johnson — August 6, 2013 @ 8:39 AM

  177. Ron, somehow my reply landed on comment 15. (???) Blame it on the WordPress ghosts!


    Comment by Phylis Feiner Johnson — August 7, 2013 @ 9:57 AM

  178. Phylis she hurt her arm a little over a week before all this…. They said it was sprained but now they are saying it could have been a blood clot… And thats what might have caused the stroke… Because the pain in her arm went away pretty fast and it isn’t bothering her at all now… The mri showed something on her overaries and her one lung… Im hoping for the best here… Because the way it looks like it can be overarian cancer… They are not in no hurry i dont know why… We asked the doctors why the biopsy hasnt been done yet… All they keep saying is they want to take one step at a time… The rehab first then the bone doctor and the biopsy will be last… I cant believe these knuckle heads are taking so long with this biopsy….


    Comment by Ron — August 7, 2013 @ 8:48 PM

  179. Ok…there are times (when it’s appropriate) that a future blot clot can be avoided by a stent.

    Especially if it CAUSED the stroke. What are they waing for…another stroke?

    The ovian cancer is another thing and should be tested and diagnosed NOW.

    So what for rehab? She can still continue with testing.

    She doesn’t need bionic legs to lie down for an MRI.

    What kind of crap is this?

    Step in and say you’d like a full explanation.

    Get another opinion, if you think that would be productive.

    C’mon. Be her advocate. You can do it.

    I have FULL faith in you!


    Comment by Phylis Feiner Johnson — August 8, 2013 @ 10:44 AM

  180. Phylis thats how they seen what they said… They seen it when they did a MRI… They told her they have seen something that looks weird on her ovaries and her one lung… And it is more than more than one thing on each of them… But they are saying they want her to get better with the therapy before they do the Biopsy… I have no idea why they are waiting so long… I tried her doctor and they keep saying they will have him call me back because he is busy… I am just hoping for the best is all i can do!!!! I went to see her today but my friend brought me home early because i had a small one there… Lastnite i had a grandmal…. Great mother she sure is no doubt about it… Long yr its been for me my gramp then my dad and now her with all this…..


    Comment by Ron — August 8, 2013 @ 8:44 PM

    • Oh, poor Ron. Tell THEM to call her doc (I have a hunch THEY will get through) or if your doctor doesn’t call, tell them you’d like a consulting physician.

      Hurry up, the weekend’s coming and nothing gets done then!

      (Sorry for the late reply, I’m sick.)


      Comment by Phylis Feiner Johnson — August 9, 2013 @ 12:58 PM

  181. Ron,

    Look for an email from me.


    Comment by Phylis Feiner Johnson — August 9, 2013 @ 1:31 PM

  182. Sorry to hear u r sick… Phylis hope u r starting to feel a little better


    Comment by Ron — August 9, 2013 @ 2:20 PM

  183. Dilantin worked for me for many years and was the best drug choice for my epilepsy. Then I got sick my skin turned yellow my teeth gums got bad. I’ve been sick now for a few years with bone pain inflammation and nerve pain… we still haven’t figured it out but since my med change to trileptal my skin returned to normal and I feel alive again…but something is still very wrong and i think it’s lupus but hasn’t showed up on bloodwork just yet!


    Comment by juliepoolie — September 17, 2013 @ 3:18 PM

  184. Julie, here’s some of what I found about Lupus:

    Lupus is a chronic inflammatory connective tissue disorder that can involve joints, kidneys, mucous membranes, and blood vessel walls.

    Problems in the joints, nervous system, blood, skin, kidneys, gastrointestinal tract, and other tissues and organs can develop.

    The blood count and the presence of autoimmune antibodies are tested.

    People with active lupus often need corticosteroids or other drugs that suppress the immune system.

    The number and variety of antibodies that can appear in lupus are greater than those in any other disorder.

    These antibodies, which are the underlying physiologic problem in lupus, along with other unknown factors, may sometimes determine which symptoms develop.

    However, the levels of these antibodies may not always be proportional to the person’s symptoms.

    Migraine-type headaches, EPILEPSY or severe mental disorders (psychoses) may be the first abnormalities that are noticed.

    Eventually, however, symptoms may affect any organ system.

    Joint Problems: Joint symptoms, ranging from intermittent joint pains (arthralgias) to sudden inflammation of multiple joints (acute polyarthritis), occur in about 90% of people and may exist for years before other symptoms appear.

    Laboratory tests can help doctors confirm the diagnosis.

    A blood test can detect antinuclear antibodies, which are present in almost all people who have lupus.

    However, these antibodies also occur in other diseases.

    Therefore, if antinuclear antibodies are detected, a test for antibodies to double-stranded DNA, as well as a test for other autoimmune antibodies (autoantibodies, such as anti-smith antibodies and others), are done.

    A high level of these DNA antibodies almost definitely means the person has lupus, but not all people who have lupus have these antibodies.

    Other blood tests, such as measuring the level of complement, are also performed and can help to predict the activity and course of the disease in some people.

    Lupus tends to be chronic and relapsing, often with symptom-free periods that can last for years.

    Flare-ups can be triggered by sun exposure, infection, surgery, or pregnancy. Flare-ups occur less often after menopause.

    Because many people are being diagnosed earlier than in the past and because better treatment is available, the prognosis has improved markedly over the last two decades.

    However, because the course of lupus is unpredictable, the prognosis varies widely.

    Usually, if the initial inflammation is controlled, the long-term prognosis is good.

    Early detection and treatment of kidney damage reduce the incidence of severe kidney disease.


    Treatment depends on which organs are affected and how active the inflammation of lupus is.

    The severity of the lupus is not necessarily the same as the activity of the inflammation.

    For example, organs may be permanently damaged and scarred from lupus that caused inflammation in the past.

    Such damage may be referred to as “severe,” even if the lupus is not active (that is, it is not causing any inflammation or any further damage at this time).

    The goal of treatment is to decrease the activity of lupus—that is, to decrease inflammation, which in turn should prevent damage.

    Very active lupus (sometimes called severe lupus) is treated immediately with a corticosteroid such as prednisone.

    Once the initial inflammation is controlled, a doctor determines the dose that most effectively suppresses inflammation over the long term.

    Usually, the dose of prednisone is gradually decreased when symptoms are controlled and laboratory test results show improvement.

    Relapses or flare-ups can occur during this process.

    For most people who have lupus, the dose of prednisone can eventually be decreased or occasionally discontinued.

    People who take corticosteroids should be tested periodically and, if necessary, treated for osteoporosis (thinning of the bones), which can occur with chronic corticosteroid use.

    People should be monitored closely by a doctor.


    I hope this helps…


    Comment by Phylis Feiner Johnson — September 17, 2013 @ 4:38 PM

    • I just hope that something shows up soon so it can be treated. My joint pain inflammation and nerve pain is getting unbearable. Did I mention skin acne and breaking out with these lupus like sores that can be unsightly because their on my arms or chest?


      Comment by juliepoolie — September 17, 2013 @ 6:35 PM

  185. I’m afraid that comes with the territory:

    Skin and Mucous Membrane Problems: Skin rashes include a butterfly-like redness across the nose and cheeks (malar butterfly rash); raised bumps or patches of thin skin; and red, flat or raised areas on the face and sun-exposed areas of the neck, upper chest, and elbows.

    Blisters and skin ulcers are rare, although ulcers do commonly occur on mucous membranes, particularly on the roof of the mouth, on the inside of the cheeks, on the gums, and inside the nose.

    Generalized or patchy loss of hair (alopecia) is common during flare-ups.

    Mottled red areas on the sides of the palms and up the fingers; redness and swelling around the nails; and flat, reddish purple blotches between the knuckles on the inner surfaces of the fingers also may occur.

    Purplish spots (petechiae) may occur because of bleeding in the skin as a result of low platelet levels in the blood.

    Sensitivity to sunlight (photosensitivity) occurs in most people with lupus, particularly fair-skinned people.


    Are you going to see an ENDOCRINOLOGIST?


    Comment by Phylis Feiner Johnson — September 17, 2013 @ 7:02 PM

    • I don’t have the butterfly rash but I have a different flushed rash on my face, chest and upper arms. My glands are swollen a bit to. I can relate to the psychosis in the beginning which went away after I was taken off of dilantin. I waS having terrible thoughts and the uncontrollable mood swings were terrifying. I am going to see an endocrinologist soon.


      Comment by juliepoolie — September 17, 2013 @ 7:25 PM

    • DILANTIN #1 for me. Initially-Phenobarbital,then over to Dilantin-HURRAY,NO MORE SEIZURES!! New dr. come by years later,well after i am in a HELL of a COLLEGE career,switches me to KEPPRA-SEIZURE!! Lost drive license and WORST of all-COLLEGE CAREER where some weeks i come home w/$1000 pay. Back on Dilantin but WAIT on Disability!! THANKS IDIOT Dr.!!


      Comment by Ed Hricak — September 19, 2013 @ 9:24 AM

  186. Julie, There’s no need for you to suffer in misery. See a good endocrinologist as soon as possible.

    P.S. That article was written by MY endocrinologist!


    Comment by Phylis Feiner Johnson — September 17, 2013 @ 10:46 PM

  187. I am a 42 year old that has been on Dilantin ( and Depakote) for 32 years. I have been having tremors for a year now. I see double a lot, as well. My pcp suggested an MRI. I am not sure that it will show anything, though if it is due to Dilantin.
    Two different neurologists have wanted to wean me off of the Dilantin, but I am TERRIFIED! I told them I was too scared and they both acted like I was stupid. What if I wreck and my kids are in the car?? What if I wreck and I leave my kids behind without a mother?? What if I have a seizure while at work??
    I take 400 mg of Dilantin per day, and they have had to increase the dosage twice within the past five years so I can keep my levels at an acceptable place.
    I am wanting to go to a specialist but am unsure who to use.


    Comment by Amy — November 4, 2013 @ 7:59 PM

  188. Thanks for your encouragement Phylis. My problem is that the seizures are controlled with Dilantin. They have said that as I am going to another medicine I most likely will have one or more seizures. I like being seizure free, but I don’t like the new side effects I have been having. I am just going to have to let go of all of this worry and give it to God. He can handle this a lot better than I can ! 🙂


    Comment by Amy — November 5, 2013 @ 6:53 AM

  189. Amy, I know. Better the devil you know than the one you don’t.

    But over the years, Dilantin can have nasty side effects — like the tremors, seeing double and also osteoporosis.

    It’s all a compromise. But you know, you could just find something better. Or a drug with an add-on that solves the problems.

    Have a little faith and give it a shot. And please keep me posted.


    Comment by Phylis Feiner Johnson — November 5, 2013 @ 9:04 AM

  190. Has anyone had any experience with Lamictal? That was one of the drugs that was suggested to me by my neurologist.


    Comment by Amy — November 5, 2013 @ 7:10 PM

    • Amy, I take the Lamictal generic (Lamotrigine) at this time. The only real issue for me (it took a total of 4 fractures to discover this) is that it can lead to Osteoporosis, which it did for me. To be honest, I hope that this never happens to you.


      Comment by Jeffrey Liakos — August 22, 2018 @ 6:00 PM

  191. I’ve been on Lamical for years — without any side-effects. And my seizures are mostly controlled.

    I do take it with an add-on of Klonopin (an anti-anxity, seizure med.)


    Comment by Phylis Feiner Johnson — November 6, 2013 @ 10:50 AM

  192. Amy, I took Dilantin for over 15 years and now take Keppra. I am thinking of going back to Dilantin since I haven’t felt “normal” since I left it.

    I am not trying to discourage you from changing since you are having side effects right now from Dilantin (which I did not have).

    You mentioned that Dilantin had controlled your seizures. Are you seizure free? If so, how long have you been seizure free? If it has been a very long time, perhaps you could simply reduce your dilantin dosage and see if that helps the effects subside, or maybe you could be one of the lucky few who is able to taper off altogether.

    Docs may be unwilling to think this way (reducing dosage without adding another drug, or leaving drugs altogether) but if you have been seizure free for many years it may be something to consider.

    If not, or if you are just not comfortable with that, then of course you are right to look at other medication options as you don’t want to let the long term side effects get any worse.

    Good luck.


    Comment by Doug — November 25, 2013 @ 12:32 AM

  193. Amy, one more thing… You mentioned they raised your dosage to 400mg in order to stay in a proper reference range.

    However, ranges can be misleading, and if you are able to avoid side effects and maintain seizure control on dilantin, even if you are technically lower than the normal range, then your doc should be willing to listen to that as each persons response is different.

    I took 300mg of Dilantin and was seizure free, and I had my dosage lowered to 230mg per day, and while I was techinically below the “therapeutic range” I was still seizure free. I ultimately got off of Dilantin, but not because of seizures, and I’ve had other docs tell me that reference ranges are very generalized, so it is what works for you that matters. If your docs don’t like that, then perhaps another opinion is in order… but again, this would only be if you were staying on Dilantin.


    Comment by Doug — November 25, 2013 @ 12:48 AM

  194. Phylis, I may have asked you this before, but is there any specific info that suggests that Dilantin use can damage the function of your hypothalumus or pituitary?

    I know I’ve touched on this before, but I haven’t found anything that says specifically that long term Dilantin use causes disfunction in these areas. Just wondered if you had heard that anywhere?


    Comment by Doug — November 25, 2013 @ 12:50 AM

    • The short answer is YES.

      “Interestingly it is not the seizure disorder itself that causes infertility but it is the typical treatment of it with Dilantin (phenytoin). Dilantin decreases FSH. ” (FSH stimulates production of sperm.)



      Comment by Phylis Feiner Johnson — November 25, 2013 @ 9:12 AM

      • So, is it that dilantin just in and of itself decreases FSH, or does it actually damage the function of the hypothalumus and pituitary, so the byproduct is that FSH is not produced properly because of the damage?

        I know thats a small distinction to some people, but I think an important one if one is to treat potential related issues properly.


        Comment by Doug — November 26, 2013 @ 12:35 AM

  195. Doug, after an hour of research , it appears that thyroid malfunction CAN affect FSH production.

    That’s the best I can do.


    Comment by Phylis Feiner Johnson — November 26, 2013 @ 9:44 AM

    • Thanks for all your efforts. I float some of my theories to my docs and they often just give me a blank look.. I know my ideas aren’t always right, but meds can cause strange happenings and I like to kick around ideas and see if i can find anything.


      Comment by Doug — November 28, 2013 @ 12:58 AM

  196. Doug, your “thanks” are very much appreciated.

    (Was this inspired by Thanksgiving?)


    Comment by Phylis Feiner Johnson — November 29, 2013 @ 11:21 AM

    • Not inspired by Thanksgiving. More from the fact I float these questions thinking if someone knows something I don’t they’ll answer and if they don’t they won’t. Then i see your reply and realize you took time out to research the question more deeply, and as I wasn’t expecting that effort, I felt I should thank you for it.

      Most folks just tell you what they themselves know from experience or what they have heard without looking further.


      Comment by Doug — December 11, 2013 @ 1:06 AM

      • Doug, that’s why I’m here. To do the best I can.

        Right now I’m not feeling too spiffy. Bad bout of depression. Been crying for eight hours.

        YOU people are what made me get out of bed. What more could I ask for?


        Comment by Phylis Feiner Johnson — December 11, 2013 @ 11:56 AM

  197. Another Dilantin user question I have is directed to men out there who have used Dilantin and then stopped taking it.

    I’ve noticed some receding of my hairline and overall less density on my head since I ended Dilantin. I recall after first ending it, I felt like I was shedding like crazy.

    I wondered if any other men had this experience, if it was just coincidence and therfore just normal male hair loss, or what?

    Or is this just me as I’m supposed to be and was Dilantins tendency to promote body hair growth also artificially giving me a fuller head of hair as well?


    Comment by Doug — December 11, 2013 @ 1:10 AM

  198. You may have genetic male pattern hair loss.

    I can only speak for myself as a female.

    I used to have long, thick hair, down to my waist.

    In one fell swoop, it was cut (by Vidal Sassoon, no less) into a bob.

    It’s been upteen years since I’ve been on Dilantin, but my hair continues to thin.

    Looking back on my paternal grand mother and aunt, I think it’s female pattern baldness. (And it stinks.)


    Comment by Phylis Feiner Johnson — December 11, 2013 @ 3:53 PM

  199. Well, I was pretty much at the point of going back to Dilantin, leaving Keppra behind, and I decided to get a second opinion from a new endo I heard about who is supposed to be pretty open minded and an independent thinker.

    He made a big deal about my bone loss, and because of that, wants to do a whole new slew of blood work and wants to wait for my normally schedule bone scan (which is coming up soon).

    So, yet again, I am having to wait on more tests from a different guy to decide if I am going to go back to Dilantin or not. Plus, I’m nervous he may want to do some bone loss treatment which from what I’ve heard can be worse than the AEDs.

    Are their any good options? I’m so tired of this non-ending holding pattern.


    Comment by Doug — March 27, 2014 @ 5:17 PM

    • Doug, I think the blood tests are a very good idea. I actually had NINE vials of blood taken and they learned about the therapeutic drug levels, metabolism, heart stuff, etc.

      It was all very illuminating.

      As for bone loss treatments, don’t let him sell you a bill of crap. Skip the Bisphosphonates — the most common medications prescribed for osteoporosis treatment include:
      Alendronate (Fosamax)
      Risedronate (Actonel, Atelvia)
      bandronate (Boniva)
      Zoledronic acid (Reclast, Zometa)

      They are real killers.

      Here’s a good link to Natural Osteopenia Treatments:


      Here’s another interesting article which stresses nutrition and Strontium for Osteoporosis.
      This mineral is highly effective at improving bone density. (And controversial.)

      Osteoporosis—Natural Help for Strong Bones (skip the biophosphates)


      Of course, you know, the best source of calcium is dairy foods, which also provide the nutrient “partners” that calcium requires in order to work, like phosphorus and vitamin D.

      A glass of milk, for instance, provides almost 300 milligrams of calcium and is typically fortified with vitamin D. If you can’t eat dairy foods, try calcium-fortified juices and cereals or take a calcium supplement.

      Calcium Carbonate is also a food resource. (An active form of calcium.)

      It’s a dietary supplement used when the amount of calcium taken in the diet is not enough.

      Examples include:Calel-D®, Caltrate 600®,
      Chooz® and Os-Cal 500.


      I know this is a lot to chew on. But I hope I’ve helped, rather than confused you!


      Comment by Phylis Feiner Johnson — March 28, 2014 @ 11:28 AM

  200. Everyone is different, and so are our seizures. I never left Dilantin and I am on Keppra. But I had to take matters into my own hands to control the side effects and Rx levels. I’m seizure free if I avoid certain triggers.

    I also tried meds for osteoporosis. Their side effects were awful. So I upped my Vitamin D to 2500 mg/day and added a daily calcium supplement; and my last bone scan showed improvement.


    Comment by Tom — March 27, 2014 @ 9:13 PM

  201. Smart action, Tom!


    Comment by Phylis Feiner Johnson — March 28, 2014 @ 11:47 AM

  202. Hi… How has everyone been doing? I have been ok here… Not to bad!!! Just taking my zonegran and Lamictal still here.. My neurologist Dr wants to do surgery on my Left Temporal lobe… He is saying it is because i have brain damage from my over active epilepsy i have 24/7… Activity all the time they are saying i have all the time there… But i feel fine here… So i sure don’t think im going to have it done!!! Because if it is not going to totally take my epilepsy away why should i take the chance is the way i look at it!!! I think it is to big of a risk… I sure do not want to chance losing memory or any thing else because right now i feel fine with everything!!!! Sticking the way i am not im no hurry am i here yet to have anything done… I only have like 7 a month and in my book thats not to bad at all


    Comment by Ronald — May 7, 2014 @ 8:55 PM

  203. Hi Ronald,

    It’s good to hear from you.

    I think you’ve made the right choice.

    Even if you decided upon surgery, I would get at least a second (and maybe third) opinion.


    Comment by Phylis Feiner Johnson — May 8, 2014 @ 10:32 AM

    • I just think it is the right choice… Because!!! If it was bad i believe… They would have got back to me alot sooner… It was 5 months ago when they did all these test really about 5 and a half months ago… And they finally let me know about this… Wether they are happy with my decision or not or well.. He told me he believes i have had this since i have been born!!! And i am still going here and as proud as ever i still am here… I figure why should i chance any problems with my memory or any other problems… I sure know the Temporal Lobe is a important part in the brain… It sure is not brain cancer and i have many more years to go here and a big time fighter i sure am!!!! Keep fighting everyone and be as proud as ever… It is so good to here from you to Phylis too and i hope you are doing good there


      Comment by Ronald — May 8, 2014 @ 2:18 PM

      • Hr told me… I have had epilepsy since i been born not the brain damage… He said the brain damage is from all the seizures i have had over the years


        Comment by Ronald — May 8, 2014 @ 2:21 PM

      • Well, isn’t it a little late to be suggesting brain surgery if you only have seizures 7 times a month?

        On the other hand, you said previously that you had seizures 24/7 which would definitely impact your brain’s health.

        Did you “grow” out of the 24/7 seizures? Because, if you’ve been having recurring seizures since you were born, that could mean a serious loss of oxygen — to your brain.

        This is making me confused and scaring me a little.

        Perhaps you should take your test results for a second consult.

        2014 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors



        Comment by Phylis Feiner Johnson — May 8, 2014 @ 4:08 PM

  204. He is saying it is showing… On my eeg that i have activity 24/7… But they are so small that they can’t be noticed by me or a person!!! But it shows it on a eeg..


    Comment by Ronald — May 8, 2014 @ 8:09 PM

  205. The part of the brain they are coming from is a part of the brain that can’t be operated on because it is way inside the brain he said…. And they spread he says to other parts of the brain sometimes


    Comment by Ronald — May 8, 2014 @ 8:14 PM

    • So how would surgery help? I don’t get it?

      He said temperol lobe. Now is he changing his tune?

      Another reason for a second consult.


      Comment by Phylis Feiner Johnson — May 9, 2014 @ 10:21 AM

  206. Plus My mom has lung cancer here… So i sure do not want to be down right now in any way… I got to be strong for her.. I sure know she only has maybe 2 good years left maybe a total of 3 years left!!!! She found out she got lung cancer about 5 months ago.. When she had a stroke…


    Comment by Ronald — May 8, 2014 @ 8:18 PM

  207. I was worried when I didn’t hear back from you when I phoned a few times.

    Worried about you and worried about your Mom.

    But remember (without guilt) that your grand mal may have contributed to her stroke when she was trying to get you before you fell down the stairs from a grand mal.

    I know that she only has a little time left. But to be an effective care giver, you also have to take care of yourself.

    Would a switch in meds do any good?

    I’m really worried. And still think you need a second consult. And paint the whole picture for the neuro.

    Your test results, your mom’s situation, the whole deal.


    Comment by Phylis Feiner Johnson — May 9, 2014 @ 10:32 AM

  208. I am being weaned off Dilantin. I was on 300 mg a day. I have been taking it over 15 years. As of this Tuesday coming I will be down to 100 mg a day. I don’t know what has been going on with me. I am angry. I am scared. I have lost a lot of my memory. I can’t remember things. I never had these problems before.

    Can anyone tell me what I can do to get my life back.


    Comment by Mrs. D. Killman — May 17, 2015 @ 8:01 AM

  209. It sounds like your body has become dependent upon Dilantin after all these years. I know mine did and “withdrawing” wasn’t a very pretty sight.

    Just try to stay the course. (I know, easier said than done!)

    Meanwhile, don’t hesitate to call the doc, tell them how you’re feeling, ask about the titration down and find out what med they’re replacing it with and its side-effects.

    Good luck…


    Comment by Phylis Feiner Johnson — May 17, 2015 @ 8:25 AM

  210. I was on Dilation for 45 years,300 MG because of some side effects gums, lack of sleep etc a new doctor took me off and put me on Keppra, (a modern wonderful drug she said) nothing happened for approx. 2 years and then followed a string of attacks, the neurologist increased the dose but it was like the meds had no effect and god help you if you miss a dose, I smashed my shoulder with one attack and ended up having three surgery over a three year period and finally they informed me that the nerve had been damaged and there was nothing they could do , so my arm now is only partially functional.

    My epilepsy had been completely controlled with Dilation for over 30 years and with Keppra it almost killed me and turned my life into a living hell, I have since gone back on dilantan and I have got my life back (so far so good) This was my experience so I would suggest to others to give great consideration before making a switch.


    Comment by Edward — May 31, 2015 @ 1:37 PM

  211. Oh Edward, you’ve been through a terrible time. But I must say that if I had a choice between Keppra and Dilantin today, I run to the Dilantin.

    But when I was diagnosed, in the dark ages (I’m 62), the choices were Dilantin and Phenobarbital. Period. End of story.

    I’m glad that my epilepsy is controlled now and I don’t have to make that choice.

    I take the max dose of Lamictal without side-effects. I’m a very lucky lady.


    Comment by Phylis Feiner Johnson — May 31, 2015 @ 2:47 PM

  212. Phylis,

    Great to hear a success story, given that you suffered epilepsy for all these years has the loss of memory been an issue to you, my short term memory has taken a beating particularly since I went through all my most recent attacks in the past few years.
    My long term is in tact but short seems to be going from bad to worse, recalling names was never my strong point but these days it takes great effort to do so.


    Comment by Edward — June 8, 2015 @ 6:58 PM

  213. My auras were diagnosed as seizures last week, so the neurologist quickly ordered a medication: Dilantin. I had read this thread a couple of days before my appointment, so I was immediately concerned. She told me not to be; most of her patients take it and have no side effects at all.

    When I got home I decided not to take it right away. Over the weekend I sent the neurologist an email, telling her that I wasn’t going to take it, and requesting a second opinion.

    She replied this morning:

    “There are other anti-convulsants to choose from. However, the list of POSSIBLE side effects for ANY medication from A to Z will look frightening.

    Fortunately most rarely occur.

    I’ll arrange for you to get an opinion from one of our other neurologists for your comfort.”

    That’s not comforting to me, so I’m going to switch to someone else.

    Meanwhile, in doing Google searches on “epileptologist” I found a doctor nearby, who has this as his stated philosophy on his website:

    “No seizures, no side effects… I strive to not only work with my patients to stop seizures but also to minimize the side effects of anti-epileptic medications and lessen the impact of seizures on quality of life. To stop seizures I work with a wide variety of antiepileptic medications, including participating in multicenter trials of investigational medications.”

    Talk about the difference between night and day. Exactly the person I’m looking for, at least if words mean anything. I’m in the Kaiser Permanente system, and he’s not. But I’m more than happy to pay out of pocket for consultations. So I sent him a letter this morning, describing my situation. I also called his office and made an appointment.

    Wish me luck.


    Comment by Steve — June 16, 2015 @ 12:14 AM

  214. YAY Steve. Congratulations.

    Now do me one favor and forward the name and location of your new doc to me in the 2015 Comprehensive List of GOOD Neurologists… Epileptologists… Neurosurgeons…and Pediatric Doctors article, so others can share your good fortune.


    Thanks. And again, congrats for your good judgement!


    Comment by Phylis Feiner Johnson — June 16, 2015 @ 9:36 AM

  215. I have a question please let me know if some one has been on dilantin since I was 7 they took me off about 5 years ago and had start having headaches to the point that I getting shots in the back of my head still have the headaches my Doctor set up eeg for me last week b/c told him that my memory is getting bad/ worst I was just trying to find out if anyone has the same problems


    Comment by Lori Rodgers — August 20, 2015 @ 8:48 AM

  216. I think the headaches, might be a sign of withdrawal or even migraines.

    People with epilepsy are more than twice as likely to develop migraine headaches as those without the disorder. Research showed that more than 20 percent of people with epilepsy have migraines, compared to 11 percent of the general population.

    In a relatively recent epilepsy study, about 16% of those people who had migraines also experienced epileptic seizures before, during or after a migraine.

    While most migraine sufferers do not have epilepsy and most people with epilepsy do not suffer from migraines, these findings still indicate a significant “overlap” of both conditions.

    Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy. And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

    There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide). However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

    If you’re further interested in the migraine connection, or you think it’s likely, take a look at this article:

    Epilepsy & Migraines — Kissing Cousins


    I hope this helps…


    Comment by Phylis Feiner Johnson — August 20, 2015 @ 10:15 AM

  217. […] your post, I did a little research. http://healthquestions.medhelp.org/d…m-side-effects https://epilepsytalk.com/2010/10/06/d…ero-or-horror/ Here are two different websites with articles/ posts about how dilantin will cause atrophy of the […]


    Pingback by new member - Epilepsy Forum — September 10, 2015 @ 7:27 AM

  218. Unfortunately, isn’t phenobarbital usually taken with Dilantin? Which puts you in a fog all the time. That was the only way I took Dilantin, I was not a fan of it.


    Comment by Dona — January 10, 2016 @ 9:45 AM

    • In my case, I was given the choice between Pheno and Dilantin. (The devil and the deep blue sea.)

      I chose Dilantin and was a perennial zombie.

      My guess is the same might have been the case with Phenobarbital.


      Comment by Phylis Feiner Johnson — January 10, 2016 @ 10:12 AM

  219. I’ve been on Dilantin for over 23 years. Up until 4 years ago, in addition to Dilantin, I was also taking Topamax. But, then I had my right kidney removed due to the fact that it was basically killing me. After that, my
    neurologist took me off Topamax, leaving just the Dilantin as my only seizure med, 300 mg’s daily. In 2014, I had my gallbladder taken out. I’m having sleepless nights lately more & more, truly scared of any liver problems. Could it possibly be long term use of Dilantin causing this issue ?


    Comment by Bill — January 12, 2016 @ 2:30 PM

  220. It’s a possibility. I would definitely ask your doc.


    Comment by Phylis Feiner Johnson — January 12, 2016 @ 5:18 PM

  221. Hello all, I have been on phenabardital and dilatin since age 16, I am now 56, I fratured my ankle from a kick to it in 2003, and after that noticed light tingling never cold feet and hands till 2010 when i slipped and fell, since then after arm suergery and broken ankle and foot 5 times, and neck suergery and back to deaden nerves, since those two sergerys and radiation for my thoat for over active thyroid. it seems to me in the winter my feet get ice cold and hands i get leg cramps, my one doctor stated try this drug, my nueroligist said i couldnt due to the fact i was on other ones. i have done the parifin wax with ucilipis, and also the tens unit i cant wait till i can get more active winter hits it hurts more. i am also thinging of trying the koflex suergery due to astio


    Comment by linda justen — February 26, 2016 @ 5:38 PM

  222. You’re already well acquainted with the bone problems associated with Dilantin, etc.

    Have you considered Gabapentin for nerve pain?

    I know it sounds lame, but that’s all I can suggest.


    Comment by Phylis Feiner Johnson — February 26, 2016 @ 6:59 PM

  223. After 35 years on 400 my Dilantin daily for epilepsy due to brain surgery for a brain abscess, I suffer from mild osteoporosis and pretty debilitating neuropathy in the left leg. Lamictal did not help. I switched over to Aptiom which gave me good control but apparently caused severe depression and anxiety so I had to switch back to Dilantin. I now have the side effects of Dilantin and the side effects of Ativan for anxiety and an antidepressant , Any recommendations?
    Thank you


    Comment by Michael H — March 30, 2016 @ 8:02 PM

  224. Michael, You’ve been dealt a pretty rough deal.

    I was on Dilantin and l lost my hair, got galloping gum rot and then became toxic and went into a coma.

    Lamictal has been very good to me. (With a “side” of Klonopin.)

    It sounds to me like you need more than mono therapy, and, aside from a new neuro, I don’t know what.

    I’m so sorry. 😦


    Comment by Phylis Feiner Johnson — March 31, 2016 @ 8:45 AM

  225. was on Dilantin 38 yrs, no prob other than fog … then Pfizer changed the capsule and I almost died. Had to change to keppra and had Kepp-rage. Went onto lamictal, serious insomnia since 2007. Am on more anti seizure meds since, and the lamictal at first cost 700 a month..


    Comment by cindy212 — May 16, 2016 @ 10:17 PM

  226. What are you taking now?

    At any rate, you shouldn’t have to pay $700 a month, even if it is name brand.

    Here’s a link that may help:

    Epilepsy — Top Financial and Medical Assistance Programs


    Also, watch out for which and what generic you take. Check with your pharmacist for any changes. You’re obvious allergic or the generic “filler” (20%) doesn’t agree with you.


    Comment by Phylis Feiner Johnson — May 17, 2016 @ 6:57 AM

  227. Dilantin was my first med prescibed. but that did not last long as my body decided to stop processing it and I ended up in the hospital for a week with a severe overdose……


    Comment by Randy — June 28, 2016 @ 10:22 AM

  228. Almost the same thing here. My dose (the standard back then) was too strong for me and I turned toxic and went into a coma.


    Comment by Phylis Feiner Johnson — June 28, 2016 @ 12:34 PM

    • I can’t remember how much I was on. Now days I am on 3600mg of teg xr and 2000mg of keppra per day. plus klonopin when needed. Epilepsy sucks.


      Comment by Randy — July 2, 2016 @ 12:02 PM

  229. I’m with you there! 😦


    Comment by Phylis Feiner Johnson — July 2, 2016 @ 1:19 PM

  230. I have been on 400 mg Dilantin (phenytoin) for 46 years for epilepsy after brain surgery because of a large brain abscess. I now have borderline osteoporosis and very bad peripheral neuropathy and dizziness. My neurologist wants me to gradually change over to 800 mg of APTIOM. Does anyone have any experience with this drug? Last time I tried to get off Dilantin I ended up with severe anxiety and depression which I am only now recovering from (using Ativan, an effective but addictive relative of Valium.)

    I would appreciate any advice or comments.


    Comment by Michael H — July 16, 2016 @ 9:54 PM

  231. I only know about Aptiom from what I’ve read.


    And it’s been ages since I’ve been on Dilantin (with hair loss, galloping gum rot, I even had the joy of a coma.)

    I don’t think the AED I’m on (Lamictal) would do the trick for you. Although it has been wonderful for me, I don’t have partial-onset seizures.

    For anxiety, I take Klonopin which “is used to prevent and control seizures.

    This medication is known as an anticonvulsant or antiepileptic drug.

    It is also used to treat panic attacks.

    Clonazepam works by calming your brain and nerves. It belongs to a class of drugs called benzodiazepines.”


    But it too has its addictive possibilities. However, I’ve been taking it for years, without any problems.

    And as an anti-panic, anti-seizure med, it’s a double win for me.

    I only hope you find your “magical medicine” mix. Good luck, Michael.


    Comment by Phylis Feiner Johnson — July 17, 2016 @ 9:49 AM

    • Thank you for your kind reply. Since I have been on Ativan for anxiety I have not had any seizure activity which is good but the side effects (weakness, dizziness and worsening of pre-existing phenytoin induced peripheral neuropathy) are hard to deal with. I previously tried xanax and then klonopin but found their side effects to be even worse. I am pleasantly surprised that you have been on klonopin for years apparently without tolerance or addiction occurring. You are lucky!

      I used to work in the International Pharmaceutical Industry and am probably too aware of side effect profiles but the benzodiazepines are a scary group of (often very effective) drugs!

      As for Aptiom I have studied the literature and it too has its drawbacks and I am as yet unwilling to risk it when I know that for me dilantin at least works reasonably well even though the side effects are really nasty. I clearly need to stop procrastinating and make a decision!

      Thank you for your blog (is that the right term?) It is good to be a part of a community rather than hiding my condition – as I did throughout my professional career.


      Comment by Michael H — July 17, 2016 @ 1:46 PM

  232. Wow Michael, being in the International Pharmaceutical Industry, must have lots of minuses (and pluses?)

    I can see with your knowledge, you have plenty of hesitance, but yes, you have to bite the bullet at some point and makes your decision(s).

    Side-effects are scary, especially since you’re so intimately aware of them. I wish I had a magic wand for the miracle mix you seek, but I too am not a doctor. 😉

    Nonetheless, welcome to the family and I hope you”ll feel free to chime in with your opinions and suggestions.


    Comment by Phylis Feiner Johnson — July 17, 2016 @ 3:35 PM

  233. The side effects with Dilantin in my case are much less than those with Keppra a drug which I have nick named the devils brew as it caused horrendous depression with me and others that I know.


    Comment by Jeff Wilson — July 27, 2016 @ 6:34 PM

  234. I was diagnosed with epilepsy when I was 13 months old . Had grandma seizures til I was 21 and then they went away and I only have petit mal seizures like dazes . they ‘ve tried almost every medication on me. and now I’m on Dilantin and Mysoline and its working good so far after I’ve also had surgery to remove a tumor that wasn’t growing but I didn’t want it there so they removed it. the surgery didn’t do any good and then they ran tests on my brain by putting about 400 wires connected to my brain to see if they could find where they were coming from and they told me they would have to go deeper in my brain and I told them I don’t want them cutting into my brain and damaging it. So I’m doing good if I get good sleep and take pills on time or don’t miss a dose of meds .


    Comment by Jack Autry — October 31, 2016 @ 12:33 PM

    • I think you dodged the bullet with the deeper surgery.

      They did such a thing to remove a benign tumor from my girlfriend and they nicked the executive function and it took her five years to recover. 😦


      Comment by Phylis Feiner Johnson — October 31, 2016 @ 1:00 PM

      • I’m 35 years old I was hit with a baseball bat 13 months ago .
        I was attacked outside my home as well as my son and husband .
        I got it the worst I’m glad it was me of course . Not them
        I had a grand mal seizure after the hit
        Then went for cratiotomy the next morning .
        Came home on Kepra
        Had seizures ever since
        Last week I was admitted for breakthrough seizures. I was put on dilatin 300 mlg at night
        And it’s horror it’s killing me I got swollen lymp nodes ,rash , tremers ,can’t sleep , memory lost , suicidle thoughts , crying , very very nervous , I’m dying slowly over here . Went to er n my dr is saying to suffer it out s month
        But I cannot do it nomore
        I’ve been threw enough !


        Comment by Star — November 14, 2016 @ 4:20 AM

  235. Dear Star, that’s crazy. You certainly have suffered, MORE than enough.

    First of all I would chart and/or photograph all of your adverse reactions.

    Then I would seek a second opinion with a full blood work-up to see if you’re on a toxic level of Dilantin. (I went into a coma on Dilantin.) That might explain a lot.

    And for heaven sakes, don’t depend on an ER doc’s advice for anything!

    Go to your neuro or another one for a second opinion.

    This link may help in terms of finding another doctor:

    2016 Comprehensive List of GOOD Neurologists…Epileptologists… Neurosurgeons…and Pediatric Doctors


    I hope this helps in some way, Star.


    Comment by Phylis Feiner Johnson — November 14, 2016 @ 10:29 AM

  236. Even though I’ve been on many other medications before my epilepsy was cured after 43yrs I was always put back on Dilantin
    and Phenobarbital. I must say that it was a great med for keeping the seizures under control, but the bad result from taking so much of the Dilantin was I even though I’ve been seizure free for almost 6 years after my surgery I still and for the rest of my life will always have a severe weekness
    with my bones for taking Dilantin for so many years!!! I wish I had realized this year’s ago for I would have NEVER taken it. I must have been taking it for approx 25yrs and have been paying for years and will for the rest of my life.
    I don’t think I’m going to have surgery on my left arm so I can move it again like I use to for I’m afraid that the bones will crack and I’ll be in worse shape.


    Comment by Marlene Linville — January 27, 2017 @ 10:30 AM

    • Dilantin and Phenobarbital have been the first line — and only thing that works for a lot of people.

      The dilemma is: seizures or bone loss?

      Tough choice.


      Comment by Phylis Feiner Johnson — January 27, 2017 @ 11:05 AM

    • I’ve been on Dilantin for over 30 years, it is the only med that works for me. I watch bone density etc and I know that I will need to buy teeth at some point…but really buying teeth and being able to watch my sons become men…vs multiple GM/TC a day…

      There was no choice


      Comment by Beth — January 27, 2017 @ 1:16 PM

      • Started on Dilantin after 1st SEIZURE and remained SEIZURE free until new Dr. Came along and changed meds right to keppra causing seizure driving, lost drive license and college career as auto mechanic,now all I do is sit around house on disability, $$$$$ in mechanic tools just sit in garage. Anybody w/suggestions on assistance please reply. Thanks. Ed.


        Comment by lckyedd — June 28, 2017 @ 10:22 AM

      • Beth, each person is different in how they react to different Epilepsy medications. Are there any adverse side-effects that you have experienced due to the Dilantin? Has it done more good than harm?


        Comment by Jeffrey Liakos — August 22, 2018 @ 5:53 PM

  237. Thanks very much Beth, for your encouraging point of view.


    Comment by Phylis Feiner Johnson — January 27, 2017 @ 3:42 PM

  238. I started with 2 grande mals in one week. Then I was put on Dilantin. I was on Dilantin for about 6 months and for those 6 months I suffered depression, hostility, irritability, thoughts of suicide, basically all of em. A few months later I had another seizure. So now Im on lamotrigine and my mood has gone 180. Just crossing fingers its controls seizures. In the meantime, my behavior over the last 6 months pushed my fiance away and she left. Maybe she couldn’t handle the new reality but in general she left me hanging. Real sweetheart.


    Comment by Jon — February 3, 2017 @ 12:47 PM

    • Jon, I’m sorry to hear about your fiance, but the good news is that Lamictal has worked very well for me.

      At first, it made me crazy hyper (a lot of people have the opposite reaction) and so I changed my bedtime dose to 5PM.

      Since then, no side-effects, no seizures, for 10+ years.

      I’m virtually 99% seizure free.


      Comment by Phylis Feiner Johnson — February 3, 2017 @ 1:34 PM

  239. Thank you for this post. I have been taking Dilantin for over 30 years (have had epilepsy for over 35 yrs), and no one has ever mentioned this to me. I have recently been diagnosed with osteopenia, the precursor to osteoporosis. I currently have daily seizures (simple and complex partials) plus grand mals about twice a month. I have recently been introduced to CBD oil, and am hoping this will help. I am also hoping to be able reduce my Dilantin soon.


    Comment by Joy — March 13, 2017 @ 9:59 AM

    • Dilantin did nasty things to me too. I switched to Lamictal (generic) with no side-effects and I’ve been seizure-free for 10+ years. I also supplement it with Effexor and Klonopin (for mood stability and anxiety).

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 13, 2017 @ 11:47 AM

      • Thank you for this info. Were you on Dilantin for a long period of time?


        Comment by Joy — March 13, 2017 @ 1:54 PM

  240. About 6 years, Joy. Six ZOMBIE years with falling out hair and eventually, galloping gum rot. 😦


    Comment by Phylis Feiner Johnson — March 13, 2017 @ 2:56 PM

  241. Phylis-I was diagnosed with Generalized Epilepsy 36 years ago. Been on Dilantin for about 30 years. Because of the potential side effects, I’m trying to change drugs. Dilantin has been outstanding for me (I played college football and am extremely active). Just had an MRI and it showed “moderate cerebellar atrophy.” Any idea how quickly it moves? I’ve always been healthy and fit, so my last scan was almost 30 years ago. I see my Neuro again in June. Wondering if you knew the speed of the atrophy in epileptics. Thanks so much. Just nervous as can be.


    Comment by John — May 9, 2017 @ 8:38 PM

    • The concern is raised that if the cerebellum begins to shrink and lose function with Dilantin use, then its ability to inhibit seizures may be compromised.

      This may be leading patients in an endless circle where they are unable to control their seizures with the very medication that was intended to help.

      The pattern and rate of progression of cerebral atrophy depends on the stage of the disease involved.

      I don’t think you are in danger. The moderate cerebellar atrophy is a result of the many years of Dilantin use.

      I’m sure your neuro will be able to tell you more.

      But if your abilities have been on par up to now and you don’t suffer any developmental problems, I don’t think you have anything to be nervous about.

      Unfortunately, it seems to come with the territory.


      Comment by Phylis Feiner Johnson — May 9, 2017 @ 11:44 PM

    • Phylis – I did a search and found references going back to the 1930’s so it is not a new phenomenon. Many of the more recent links were to lawyer type sites offering to “help” people in law suits against the manufacturers!

      I didn’t find papers offering evidence proving a direct correlation between dosage and atrophy, and there were even suggestions that atrophy might result from the epileptic episodes rather than as a side effect of the phenytoin used to treat the condition.

      In over 40 years of using phenytoin none of the neurologists I have used in five different countries have mentioned the possibility of atrophy with me. They all mentioned gum problems and bone problems as the most likely side effects. On my next six monthly check up I will certainly raise the question however!


      Comment by Michael — May 10, 2017 @ 12:11 AM

      • Michael,
        Yes, please check with your Neuro. I had not heard of this possibility until I saw my new Neuro (who specializes in Epilepsy) until December of last year. I was concerned with the Liver Function increases. The atrophy has, obviously, taken a front seat. It is unfortunate, if Dilantin has caused this (although I don’t have any symptoms) because it has been outstanding (to say the least) in controlling my seizures. Best to you and thanks.


        Comment by John — May 10, 2017 @ 9:02 AM

    • Thanks so much, Phylis. I really appreciate it. I have another pair of eyes (Radiologist) looking at the MRI, as well.


      Comment by John — May 10, 2017 @ 8:56 AM

      • All eyes on deck. Second opinions (even third consults) are welcome. If for nothing else, then to get a definitive idea of what to expect.

        Keep us posted, please, John.


        Comment by Phylis Feiner Johnson — May 10, 2017 @ 10:45 AM

      • I definitely will. Thanks so much, Phylis.


        Comment by John — May 10, 2017 @ 2:50 PM

  242. Keppra long ago replaced this medicine as being the most widely used due the fact it has far fewer side effects.


    Comment by B. Kasunic — May 31, 2017 @ 3:21 PM

    • There are still legions of people who take Dilantin. Then and now.

      Just read this column!


      Comment by Phylis Feiner Johnson — May 31, 2017 @ 4:30 PM

      • Phylis,

        Wanted to let you know that yesterday I began a regimen of Keppra. I am still taking the Dilantin in conjunction. However, the plan is, after 5 weeks (at that time I should be taking enough Keppra) and if the blood tests look good and I feel right, we will begin weaning me off Dilantin. Been on it for over 30 years, so that should be an adventure. Thanks!


        Comment by John — June 20, 2017 @ 7:14 PM

  243. John, I hope you see an improvement. And here’s a tip: Try to supplement your Keppra with a B-Complex vitamin. It seems to cut down on side-effects as people have sworn to me!


    Comment by Phylis Feiner Johnson — June 20, 2017 @ 8:04 PM

    • I will do it. Thank you so very much for the advice and moral support!


      Comment by John — June 21, 2017 @ 8:32 AM

    • Update – I am now off the Dilatin after 30+ years. Taking Levetiracetam ER. 2,000mgs each night. Thus far, no issues. Sleeping fine with no side effects. Obviously, the journey is just beginning, but I promised to keep you apprised of my status.


      Comment by John — October 3, 2017 @ 10:50 AM

  244. Allergic to it! Hives and fever. Also allergic to phenobarbital, tegretol, lamictal, keppra and banzel. All the same effects


    Comment by Nicole Koloski — July 2, 2017 @ 8:55 AM

    • I also went toxic on Dilantin. Coma and the whole nine works.

      Loss of hair and galloping gum rot, too. 😦

      Nicole, what are you taking now?


      Comment by Phylis Feiner Johnson — July 2, 2017 @ 9:02 AM

  245. Just asking… just got put on 600 ml from 300 ml, of dilantin. Suffer from massive seizers. Should i work myself up to that dosage or just take the 600mls?


    Comment by Josh — July 5, 2017 @ 11:30 PM

    • You should titrate up slowly and tell your neuro about your reactions, NOW.

      You should not be suffering massive seizures from a dose increase.

      Also, bloodwork might be a good idea, to make sure the dose isn’t toxic to you.


      Comment by Phylis Feiner Johnson — July 6, 2017 @ 9:33 AM

      • Yes, I would definitely get bloodwork to be certain your liver functions aren’t negatively affected.


        Comment by John — July 6, 2017 @ 10:04 AM

  246. I took DILANTIN 400 milligrams for at least 30 years !! I think it’s a great medication


    Comment by Debi Harmon Ference — August 10, 2017 @ 9:39 PM

  247. I have been taking Dilantin over 50 years. Am I getting neuropathy from dilantin or my fractured spine?


    Comment by Tina Swindle — August 21, 2017 @ 6:07 PM

    • I would guess your spine, since neuropathy is a nerve disease.


      Comment by Phylis Feiner Johnson — August 21, 2017 @ 7:04 PM

    • Peripheral Neuropathy is a wel documented if fairly rare side effect of Dilantin (phenytoin.). I have been on Phenytoin since 1970 and developed Neuropathy several years ago. My neurologist says there are drugs that might give symptomatic relief but they also come with potential,side effects so I won’t take them. I find that meditation and exercise help somewhat but it is an uncomfortable and physically limiting condition. A fractured spine sounds very painful but I don’t know if it also causes neuropathy.


      Comment by Michael H — August 22, 2017 @ 2:35 AM

      • Thank you so much for your insights and valuable knowledge. It’s an invaluable help, Michael.


        Comment by Phylis Feiner Johnson — August 22, 2017 @ 8:06 AM

    • Tina Swindle, I know that it is said that something that is not broken is not worth being fixed. The side-effects aside. does Dilantin give you any relief otherwise?


      Comment by Jeffrey Liakos — August 22, 2018 @ 5:48 PM

  248. I have been on Dilantin for 46 and experiencing extreme numbness in my toes. Is there anything I can do for this numbness?


    Comment by Paula Kinsey — September 6, 2017 @ 10:46 PM

    • It could be a circulation problem. Although numbness is a side-effect of Dilantin, I would definitely see my doc.


      Comment by Phylis Feiner Johnson — September 7, 2017 @ 8:31 AM

  249. What about ability to remember things while on this drug for long periods of time?


    Comment by Carol w — October 23, 2017 @ 11:52 AM

  250. ya i to have been on dilantin for about 20 years and i have a lot of the same side effects as described by other. Neurologist said let’s try to replace it with Keppra. That lasted 2 days and I flushed them down the toilet. I’ve heard them called the devil’s pill. It causred me to have raging anger and I slept 18 hours.


    Comment by Richard — November 28, 2017 @ 1:11 PM

    • Richard, you might be interested in this article:

      Keppra — What People Are Saying



      Comment by Phylis Feiner Johnson — November 28, 2017 @ 2:49 PM

    • I was on Dilantin since 1995 & my neurologist said that it is bad for my bones. Now, after having a seizure I am taking Keppra & feel so much better!
      I feel like saying to my doctor, gee doc – don’t you think you should have gotten me off the Dilantin & switched me to Keppra before I had to have a seizure!
      This whole MS situation really sucks & find it hard to find the right doctor to treat me.
      Why isn’t MS cured by now is my question-


      Comment by Lorianne Hart — December 3, 2017 @ 5:38 AM

  251. Was one of the first drugs they put me on when I was diagnosed. Had a bad allergic reaction to it. Had hives.


    Comment by Nicole Koloski — November 28, 2017 @ 7:37 PM

  252. Hi, my name is Lorianne-

    I got MS in the year of 1995 when I was 25 and they put me on Dilantin. Well, many years have passed since then and my MS has remained a mild case although there have been many bumps along the way with minor MS attacks. Even though I know I’m extremely lucky, I still wonder why my neurologist hasn’t switched my medication from the Dilantin to Keppra.
    The reason why I mention Keppra is because I recently sufferered a seizure after finding out awful news about my Daughter’s health. So, I have been on Keppra ever since and love it. Plus, my neurologist said that Dilantin is very bad for my bones so I’m lucky to have stopped it. I hope you have better luck than me!
    God bless you,

    Liked by 1 person

    Comment by Lorianne Hart — December 3, 2017 @ 5:24 AM

    • Lorraine, did you have any gum or teeth problems on Dilantin?

      I got galloping gum rot and my long hair fell out.

      I’m glad Keppra is working so well for you, it’s wonderful when it does work as many testimonials will concur.

      Hoping your “good luck” continues!


      Comment by Phylis Feiner Johnson — December 3, 2017 @ 10:08 AM

      • Hmm. Dilantin and keppra for MS. My wife, she too has MS, and was prescribed clonazepam. Was there a specific symptom (if you don’t mind sharing)?


        Comment by Tom Waltz — December 5, 2017 @ 7:07 AM

      • A specific symptom for the MS and epilepsy? I don’t think I’m understanding you.

        Clonazepam is used to treat seizures and panic disorder.

        Keppra is is an anti-epileptic drug used to treat partial onset seizures in people with epilepsy

        Dilantin an anticonvulsant. It works by slowing down impulses in the brain that cause seizures.

        I would guess the Clonazepam is being prescribed as an anti-anxiety med. (That’s what I take it for.)

        And you might find this article interesting (and controversial):

        MS or Epilepsy?



        Comment by Phylis Feiner Johnson — December 5, 2017 @ 9:59 AM

  253. was one of the first drugs besides phenobarbital, neurontin , mysoline *{ one of the best til the drs mixed other meds ..} escorbarb, *& many others since 8 yrs old ..at 35 yrs went to a new dr , pulled me off my meds wanted to try something newer.. this was 17 yrs ago .. started me on Keppra .. been on it ever since ..i eat more healthier , { organic foods} no sugars , oils , only oil i do use for cooking , is coconut oil .. noticed when on dilantin , gums , stomach issues , even drs did bone scan , at 45 yrs , the dr told me , my bones were that as an 85 yr old woman , 5 yrs later at UCD ,, was tested again ..my present dr , mention my bones were that of 95 yr old , have to watch everything i do .. put me on disability, because couldnt lift certain weight { 50 lbs required } , plus , while on dilantin , had a seizure , which drs noticed was in very dangerous levels , one day would be very high , next day , very low <— this was 18 yrs ago .. happy to be on keppra .. no mood swings , take vitamins to counteract, the mood swings

    Liked by 1 person

    Comment by Cathy Flowers — April 1, 2018 @ 10:48 AM

    • I went into a coma on Dilantin (in those days, they didn’t check blood levels), got galloping gum rot and my waist length hair fell out — to the extent that I cut it off into a bob style.

      50 years later, I still have short hair and I go to the dentist 4 times a year for deep cleaning. 😦


      Comment by Phylis Feiner Johnson — April 1, 2018 @ 11:41 AM

  254. I was surprised to learn that YOUTUBE has a number of items related specifically to the side effects of Dilantin (Phenytoin.) For example:

    It has numerous other Epilepsy related items too. Of course I might just be the last person to know about this !

    Liked by 1 person

    Comment by Michael H — April 11, 2018 @ 2:49 PM

  255. I, for one, didn’t know. Thanks for the tip (and link) Michael!


    Comment by Phylis Feiner Johnson — April 11, 2018 @ 5:25 PM

  256. I was on Dilantin for more than 35 years. The problem I noticed most was the gums swelling and losing teeth.

    17 years ago I had a temporal lobectomy and gained complete control of my seizures. I say this because after surgery, it was my responsibility to pick which drug I wanted to stop taking as time went on and I stayed in control. I first chose Trileptal to stop the dizziness and double-vision then I chose Keppra because of the rage it caused. I didn’t want to stop taking Dilantin because I was afraid to let go of my “security blanket”.

    5 1/2 years later I was told my Vitamin D level was dangerously low and it was probably Dilantin causing it. It was the hardest decision I ever made but I felt it was the right time to finally go off Dilantin. I’m glad to see it made no difference – that I stayed in control but we sometimes fear the result of letting go of that blanket.


    Comment by Ed — April 14, 2018 @ 9:33 AM

    • I took Epilepsy for over 30 years (350mgs/day) with no seizures for 20. Played college ball. Went in last year for an MRI on the brain, because I was informed by my new Neuro that Dilantin can cause Cerebellar Atrophy. I have Moderate Atrophy. Switched completely to Keppra as of Oct. 2017, after being weaned off Dilantin. So far, no seizures and feel great. Keeping workouts and eating healthy helps. Liver functions went way down to normal levels, as well. However, I can’t complain about Dilantin. It allowed me to play ball and live a normal life.


      Comment by John Emerick — April 14, 2018 @ 10:25 AM

      • John, I’m sure your healthy life style goes a long way, too.


        Comment by Phylis Feiner Johnson — April 14, 2018 @ 10:37 AM

      • Didn’t know that my parents making me eat vegetables and fruits would behoove me. Didn’t like learning to like them, but glad I did get to that point. Thanks, Phylis.

        Liked by 1 person

        Comment by John Emerick — April 14, 2018 @ 10:49 AM

    • Oh Ed, it’s so difficult to switch from the devil you know to the devil you don’t know!


      Comment by Phylis Feiner Johnson — April 14, 2018 @ 10:35 AM

  257. I would have to say that Dilantin was a Horror to me. I was on it for years, but just made me overwhelming tired and gave me memory trouble and I was still having seizures. The neurologist I was seeing then, one day came into the room, and before I could say anything he said “Well I guess that’s the best we can do. You’re just going to have to live with it.” After that I went to another Neuro, and he got me right into their EMU. They took blood samples and found that I was close to having a Toxic Reaction to the Dilantin. They got me off of it as soon as possible, and ever since then it’s been #1 on my list of medicines not to try ever again.


    Comment by David Jensen — June 28, 2018 @ 3:35 PM

    • I went toxic on Dilantin, lost my long hair and ended up with galloping gum rot. So I “feel your pain”.


      Comment by Phylis Feiner Johnson — June 28, 2018 @ 3:38 PM

  258. Indian neurological doctors have given up this medicine. Dilantin is a horror not recommended now,gums were affected.


    Comment by Syed yusuf — June 28, 2018 @ 10:53 PM

    • I’m glad they were smart enough to see what Western doctors don’t seem to get — all the damage that Dilantin can incur.


      Comment by Phylis Feiner Johnson — June 29, 2018 @ 8:54 AM

      • I think what Syed is inferring is that SOME Indian neurologists have given up Dilantin or rather Phenytoin (the generic name) as a first choice AED. They might however still use it for established patients, or by injection in status epilepticus on occasions. Phenytoin is still manufactured/sold by some 20 companies in India (several of these export it to the US!) One of these 20 companies is Pfizer who sell it under their trade mark as Dilantin Kapseals, injection and Suspension.

        As I understand it Phenytoin is not used widely in the US either by neurologists as a first choice AED though it is still widely used. It is also true (hopefully) that US doctors are very aware of the potential side effects of Phenytoin and only prescribe it when the estimated risks outweigh the possible side effects.

        One thing in phenytoin’s favor to many people is its comparatively low price (one tenth?) as a generic in comparison with the newer patent protected AEDs such as Aptiom, Fycompa or Felbatol for example.


        Comment by Michael Hamilton — June 29, 2018 @ 12:06 PM

      • Wow, Micheal. You’re a font of knowledge!!!!

        Thank you, thank you, thank you for all this information.


        Comment by Phylis Feiner Johnson — June 29, 2018 @ 4:02 PM

  259. Phylis Feiner Johnson, I have never taken the Dilantin. Calling it a hero or a horror-I assume that it varies from person to person, however, if it works, stick with it. Just my thoughts.Personally, I wish that more natural means were considered by Medical Doctors who specialized in Western medicine!


    Comment by Jeffrey Liakos — July 6, 2018 @ 7:20 PM

    • From my personal experience, it’s a horror. I went toxic from it.

      (For some reason they didn’t test blood levels back in the prehistoric days when I was diagnosed.)


      Comment by Phylis Feiner Johnson — July 6, 2018 @ 10:57 PM

    • What kind of natural means are referring to?


      Comment by Steve — July 7, 2018 @ 2:15 AM

  260. Steve, herbal remedies, healthy diet-to name a few things. Medication can be a lifesaver, however, some of the side-effects are not that ideal!


    Comment by Jeffrey Liakos — July 7, 2018 @ 9:15 AM

  261. Great article. 75 yrs old. Taking 400 mg of Dilantin daily. Also 5 phenobarbital/day/32mg each Peripheral neuropathy getting worse. For example, I learned today that I may not be able to go into ocean. Lost balance today and two spectators helped me out.
    Sign me up.


    Comment by John Beasley — August 5, 2018 @ 9:00 PM

    • OH John, I’m no sorry.

      My husband has Peripheral Neuropathy (not from Dilantin) and is in terrific pain daily.

      Damn Dilantin!


      Comment by Phylis Feiner Johnson — August 6, 2018 @ 10:00 AM

  262. Phylis Feiner Johnson, Dilantin is one medication I had never been prescribed. Are you 100% certain that the compression fracture in your spine is a result of the Dilantin, or have you had any other medications which may have also contributed to this problem?


    Comment by Jeffrey Liakos — August 10, 2018 @ 8:48 PM

    • The compression fracture was caused by a fall — long after I took Dilantin. At the same time as the fracture, I suffered a concussion.

      Although I was on Dilantin for 10 years, I’m not sure it was the culprit, since this was way after then.

      It was of an issue of balance. (I don’t know why, but I went through physical therapy to improve my balance and it really did the trick.)


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 10:34 PM

      • Phylis Feiner Johnson, even if this is not entirely relevant, what would happen if someone who takes Dilantin has no side-effects and another person experiences many side-effects, what would that mean? That one person can tolerate it more than another?


        Comment by Jeffrey Liakos — August 12, 2018 @ 11:42 AM

      • Yes, Jeffrey.


        Comment by Phylis Feiner Johnson — August 12, 2018 @ 12:13 PM

  263. Phylis Feiner Johnson, I put a comma in the last comment when I meant to put a question mark. That was realized on review of that comment. Every medication has its share side-effects. However, the negatives of the Dilantin aside, did it help otherwise?


    Comment by Jeffrey Liakos — August 12, 2018 @ 4:38 PM

  264. Dilantin (Phenytoin) blood levels rise after long term use?

    I have used Dilantin brand phenytoin, not generic Phenytoin, for a long long time. 2X100 mg morning and night. From 2000 to 2017 my blood level varied from 13.7 to 16.8. This year peripheral neuropathy symptoms and dizziness/gait unsteadiness increased fairly significantly. I visited my neurologist last month and had blood tests and an EEG. My Dilantin level was 23 which is well above the upper recommended level of 20. My neurologist told me that after long term use the livers ability to metabolize phenytoin decreases, blood levels rise and dosage must be dropped. He suggested I drop to 3 daily, which is a 25% drop, which is significant. I did that two weeks ago and I must say it helped decrease the symptom within a week. As a precaution I have chosen not to drive for a month until I have my next blood test to check my phenytoin level in case it has fallen too low(below 10.0).


    Comment by Michael H — September 9, 2018 @ 10:15 PM

    • As you probably know, my blood levels rose after just a short time on (brand name) Dilantin — until it became toxic.

      And what you say is important information for anyone taking Dilantin. Be vigilant about checking your blood levels.

      Because, in my day (dinosaur years ago), blood levels were not checked. And the results were not very pretty.

      A 14-year-old in a coma.


      Comment by Phylis Feiner Johnson — September 9, 2018 @ 10:24 PM

  265. Phylis Feiner Johnson, as exaggerated as this sounds, what if Dilantin is a Godsend for some, however, it is a curse for other people?


    Comment by Jeffrey Liakos — September 9, 2018 @ 10:36 PM

  266. Phylis Feiner Johnson, would individual chemistry be the primary governing factor for whether or not a person can tolerate the Dilantin, or any other Epilepsy medication for that matter? What would it mean if a person responded better to natural remedies than prescription medication to treat any medical conditions that they have? Well-intentioned as Western medicine is, I think it is short-sighted in many regards.


    Comment by Jeffrey Liakos — September 12, 2018 @ 4:12 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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