Epilepsy Talk

Dilantin – What People Are Saying… | June 24, 2013

When I was first diagnosed with epilepsy back in 1969, the availability of AEDs was limited. Phenobarbital or Dilantin. Pick your poison.

I chose Dilantin. It was not a pretty picture.

I was a walking zombie, constantly keeling over, and the final insult was when I went into a coma because of toxic blood levels. (No brain, no pain?)

But many have their own serious tales to tell. Here are some of their experiences. And some advice…

The Benefits

“Dilantin may be an oldie, but for me it has been a goodie at 300 mg/day alternating with 400 mg/day. I have climbed mountains, run a half-marathon, and not been cognitively affected at all.

I am now working on my PhD in the top program in my field. Gums fine, bone density fine (with vitamin supplements and weight-bearing exercise).

I don’t know what the future holds, but Dilantin has been a blessing and a constant for me over the last 26 years.”

“Was given Dilantin and then increased the dosage to 200mg twice a day.

It has now been almost one year and a half, and I can now hold my grandchild.

I do have poor bone density but am treated for this. Praise the Lord.”

“I have been on Dilantin for almost 2 years, and overall I am happy with the results.

Being on this has allowed me to drive again (as crashing into a pole after a fit kinda cost me my license) and since I have been taking it, I have had no more seizures.”

“I have been using Dilantin since I was 15 years old and have had no side effects.

I am 42 years old now. I thank god because I have grown out of most of my seizures.”

“I’ve had epilepsy for 58 yrs and Dilantin was the drug that really made me able to function normally after going through other drugs.”

The Compromises

“This is the only drug that has worked for my seizures. I hate it, however, it beats seizures.”

“Works fast and was effective for me, but the side-effects left me in never-never land.

Could not think straight, had no short-term memory, was dizzy, and had no sense of time.”

“I think Dilantin is good for stopping seizures, but the side-effects are really bad.

They seemed to take over my life more than the seizures would have.”

“I am taking Dilantin and have been for about four years now. It does have side-effects.

I feel so weak all over my body most of the time and I also see kind of blurry which began right after taking Dilantin.

I also shake so much that people ask me if I am nervous or drink a lot of coffee.

The only kind of good thing about Dilantin is that it controls my seizures a little better than all the ones I have tried like, Tegretol and Lamictal.”

“Dilantin, did an excellent job of controlling my seizures. Unfortunately it also had severe cognitive and psychological effects.

I was unable to concentrate on my schoolwork, unable to put thoughts together in response to questions and, when a thought would come to me, unable to put it into words.

I also found myself having tremendous mood swings and, though I have always had a very happy, optimistic and upbeat personality, I often felt depressed…” 

The Dangers

“I’ve been on Dilantin for a little over 16 years and counting. I just can’t handle these side-effects.

It ruins a large aspect of my social life and I feel stupid around others when I’m not engaging quickly enough in conversation.

This medication is helping me control my seizures and I’m grateful for that but at what price?”

“I’ve noticed side-effects such as stigma (simple partial) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile dysfunction, to name a few.”

“I shake in the mornings, my face itches, and I feel sick to my stomach. I have been on this for 15 years.”

“I take 400 mg of Dilantin a day and I suffer from being light-headed, insomnia, and I sometimes see and hear things that are not there.

Plus sometimes it sounds like there’s an angry bee stuck in my ear and the buzzing drives me nuts.”

“When I was 6 years old, I was diagnosed with epilepsy. I was put on Dilantin.

I started out with a rash. It got worse. The rash then broke open and I started losing my skin.

My mother took me right away to Children’s Hospital at San Francisco, CA. This was in 1949.

They had no treatment for it. They put cold compresses on me to treat me. They thought I was going to die.

Somehow, I survived it.”

“I experienced Stevens-Johnson Syndrome when I first started taking this drug. It took 3 months of high doses of prednisone to recover.

“Obviously not for me. The rash and borderline psychotic behavior was enough to convince me.”

“I was originally put on Dilantin and had a serious reaction to it.

I had every side-effect you could have, including the extreme one of a rash which was everywhere and being unable to walk or eat.

I am very stubborn and left it for a month before going to a doctor who immediately put me in the hospital.

Turns out I was deathly allergic and my organs were starting to shut down. That’s why I couldn’t walk or eat.

So advice for anyone who develops a rash, get it treated right away.”

“I have been taking Dilantin for a few months now for both Petit-mal and Grand-mal seizures. I have experienced all of the side-effects from the medication.

My lymph nodes are swollen and very painful. It is making it difficult to talk.

My whole face and neck are swollen as well. I have had painful headaches since two weeks after I started taking the medication.

I have also had a fever for the past month around 99 degrees to 100 degrees.”

“Besides cross-eyed vision, depression, suicidal tendencies, swollen gums, loss of appetite, and slurred speech, Dilantin is also known to ‘cause’ seizures.

Something the doctor fails to inform parents and epileptics as risks.”

“I had pancreatitis induced by Dilantin, soaring liver enzymes, Dilantin induced and peripheral neuropathy that is worsening at a frightening speed in my feet, also Dilantin induced.

This is not just my assessment or my doctors either.

Parke-Davis, the manufacturer, was contacted and they said — ‘get her off of that’.

Since then, I’ve talked to Parke-Davis and their new recommendation is Dilantin is for short-term use only.”

“The side-effects of this medication are worse than having the seizures themselves. I would not recommend it to any one.”

“I was taking Dilantin for 26 years and it destroyed the whole back side of my brain.

Now I need to do more testing to see if I have cancer from Dilantin.

If you ask me, Dilantin should not even be on the market as it has destroyed my life.”

“I was on Dilantin for close to 37 years and it has caused all kinds of health issues for me (osteoporosis, memory loss, total loss of parts of lower jaw bone, the loss of all my teeth and severe arthritis).

I want to try somehow to make this drug taken off all formularies of health care providers so that no one else has to go through this myriad of health issues.

It’s time to make these drug companies responsible for their poison.”  

Another article of interest: Dilantin — Hero or Horror?  https://epilepsytalk.com/2010/10/06/dilantin-%E2%80%93-hero-or-horror/

To subscribe to Epilepsytalk.com and get the latest articles, go to the bottom box of the right column and click on “Sign me up!”

Resources: Dilantin patients themselves.

 

 

 

 

 


144 Comments »

  1. I’ve been on Dilantin about 50 years and it has been wonderful for me at 300 mg daily until about the past six months. Continued toxic levels, even at 200 mg, and peripheral neuropathy in my feet have caused my neurologist to switch me from Dilantin to Vimpat. The (very slow) transition begins June 30.

    Like

    Comment by Maggie — June 24, 2013 @ 10:46 AM

    • 8/20/13- Maggie, I myself suffered a grand mal seizure back in 1984 that hospitalized me for a total of (7) days. I did have evidence of a spike in my right temporal lobe. I have also been on Dilantin since that period of time, averaging approximately 400 mg. a day. Every so many years I would see a neurologist, usually a different one, just for a check up. Throughout these periods of time, my regular doctor would draw my blood to verify the Dilantin level in my bloodstream. Approximately 5 years ago I went to a neurologist who took my blood and my Dilantin level was 1.8. HE was not that concerned with my level as how I was feeling. I told him I felt fine and he stated that the amount of Dilantin I was taking was probably not doing any good but to keep on it. Back in the middle of May, 2013 I had my second gram mal seizure in (30) years. This time I was in the hospital for (4) days. I can tell you I do not remember the seizure or the following (24) hours. They started me on 1000 MG. OF KEPPRA while in the hospital but after 6-7 weeks I could not handle the mood swings. I now have a new neurologist who has weaned me off Keppra onto 400 mg. of Vimpat. How is that working for you? Any input about Vimpat would be appreciated.

      Like

      Comment by J.W. — August 20, 2013 @ 3:11 PM

    • Hi Maggie, i too have been on Dilantin 40+ yrs,started having this peripheal neuropathy in feet but never could figure out wherte come from-THANKYOU. Ed

      Like

      Comment by Ed Hricak — September 17, 2013 @ 11:02 AM

    • How I’d the transition from Dilantin to Vimpat go? Had a similar experience.

      Like

      Comment by John — March 1, 2017 @ 8:31 AM

    • It amazes me that people are on such low doses. I have been taking 900mg daily for about 30 years now. But I know everyone is different.

      Like

      Comment by Vinenessa — June 7, 2017 @ 8:05 AM

  2. Maggie, that sure was a long run.

    Did you have any side-effects besides neuropathy?

    What will you be titrating up to on Vimpat? With blood tests?

    I sure hope it works for you.

    Let us know and good luck!

    Like

    Comment by Phylis Feiner Johnson — June 24, 2013 @ 11:03 AM

    • My neurologist increased the Vimpat to 150 mg twice a day because at the time I saw him a couple weeks ago the level was not in therapeutic range. However, as he said and I’ve read, that range is not well-established, and it’s more important to go by how I feel than the numbers. This is a new approach for me, and I will have to get accustomed to it. He told me that blood testing is much less important with this drug. So far so good. He said I’m feeling better more because there’s less Dilantin in my system than because of the introduction of Vimpat. I do feel wonderful, less foggy, more alert, even “feisty,” as my husband says. But he follows that up with, “But it’s a good feisty!”

      Like

      Comment by Maggie — September 18, 2013 @ 11:17 AM

      • YAY!

        I’d take Vimpat over Dilantin ANY day. (I took Dilantin for years and I’m well acquainted with the misery involved.)

        My only question is: Why didn’t he do it sooner!

        Like

        Comment by Phylis Feiner Johnson — September 18, 2013 @ 12:09 PM

      • Hello-can you Please give me some ides about vimpat-all i ever and still take DILANTIN,Neuro never mentioned anything else. Ed

        Like

        Comment by Ed Hricak — September 18, 2013 @ 12:40 PM

      • Strange-guess i am only person that can handle Dilantin?? Well aware of side effects,nothing really bother me,on it over 40yrs,kept me seizure free. Think i be afraid to switch-Dr. tried at 1 point,put on keppra-SEIZURE. Well,i cant complain-SEIZURE FREE as long as on DILANTIN! People like you Phylis-people that care! Entire world needs to be this way-THANKYOU!

        Like

        Comment by Ed Hricak — September 20, 2013 @ 9:32 AM

  3. My 25 year old son is on Dilantin 500mg/day. He feels no side affects. He has been taking it for about a year. If he misses one dose he has a seizure. Yesterday he had one without missing a dose. Ha can’t take Kepra or Lamictal because he gets aggressive, angry and depressed. Do others feel that the dose of dilantin must be steadily increased for effectiveness? He thinks the seizure happened because he was not really timing the doses 12 hours apart.

    Like

    Comment by Janell — June 24, 2013 @ 11:46 AM

    • YES JANELL, From my personal experience, “the dose of Dilantin must be steadily increased for effectiveness”.

      Janell,
      Since I came up with grand Mal seizures 15yrs ago, I tried Lamictal & Keppra, with out much effect in controlling my grand Mal seizures.

      Therefore, my Neurologists switched me to Dilantin starting with 100mg/day, ten years ago,

      The low doses failing to control my seizures, the doses steadily increased to 600mg/day, ten years later.

      Janell,
      While you can say, raising the Dilantin doses per day CERTAINLY & EFFECTIVELY controlled & minimized my Grand Mal seizures, managing the side-effects of very large dose of Dilantin is another battle.

      Therefore, knowing the LESSER EVIL, “seizures vs. Dilantin side-effects”, had to be a very tough choice to be made to accept or overcome the ordeal.

      Wishing you all the best, Good Luck !!!

      Like

      Comment by Gerrie — June 24, 2013 @ 6:27 PM

    • Started on Phenobarbital-seizure ! Switch to Dilantin-SEIZURE FREE over 30+yrs. Idiot Dr-new Dr. switch to keppra-SEIZURE! Back on Dilantin-Seizure Free(unless get all stressed out). Now just need to have Dr. fill out/sign papers to drive again! Dr. switch meds-seizure,worst of al,WORST of ALL-LOSE JOB/CAREER-need license to perform. 2yr college degree,all certifications-DOWN DRAIN,THANKS IDIOT Dr. AWAIT dISABILITY!

      Like

      Comment by Ed Hricak — September 20, 2013 @ 9:40 AM

      • this goes for everybody….don’t just let your doctor switch your meds whenever he/she wants. it’s up to you. you need to give the yes or no. if you don’t feel comfortable with a switch …don’t be afraid to say no thanks, or tell your doctor you are comfortable with the meds your already taking! i read so much of “my doctor switched” …you have to say ok! your the one in charge! never ever forget that!

        Like

        Comment by amy guenette — September 16, 2016 @ 11:11 AM

      • Amy, you go girl! Thanks for the reinforcement!

        Like

        Comment by Phylis Feiner Johnson — September 16, 2016 @ 1:26 PM

  4. Compliance is a serious issue. If he can’t remember to take the Dilantin on time, have him put his pills by his toothbrush. (That’s what works for me.)

    On the other hand, I think blood work would be helpful to ascertain that he has the right level of Dilantin in his bloodstream

    Like

    Comment by Phylis Feiner Johnson — June 24, 2013 @ 2:20 PM

  5. I truly wish that comments made regarding personal experience with Dilantin or ANY seizure medication would list the TYPE of seizure in which that person is diagnosed with. The fact of the matter is that everyone is uniquely different physiologically that the one thing that can help us all determine a pattern in side effects is the type of seizure. Maybe those who have the worst side effects have the same type of seizure and we can make a general conclusion that if you have this kind of seizure stay clear from this medication .

    Like

    Comment by Basia — June 24, 2013 @ 2:48 PM

  6. An excellent point, Basia.

    I agree, most people talk about their meds, but not about their seizures!

    Like

    Comment by Phylis Feiner Johnson — June 24, 2013 @ 3:32 PM

    • LISTEN to Phylis everybody,HONESTLY SHE is VERY HELPFUL. THANKYOU-PLEASE DONT LEAVE THIS SITE. Ed

      Like

      Comment by Ed Hricak — September 17, 2013 @ 11:04 AM

  7. Hi Phylis,

    I was on dilantin for a few months and my gums felt bad, eating an apple caused pain. The reason my doc finally took me off, was because i could not reach the therapeutic range. I was finally moved over to Lamotrigine, which worked for like 6 months, then caused me to have seizures that were like 6x worse than i had experienced before. Had to request to be taken off that one. Now i’m on Gabapentin and it’s a lot better on the side effects, plus it schedules my seizures for the mornings, which to me is a blessing since i use to have them at all times of the day which was not good, since they always happened at the most inconvenient times.

    Zolt

    Like

    Comment by Zolt — June 24, 2013 @ 4:13 PM

  8. I’ve been on Dilantin for about 20 years now since having a seizure on 8-19-1993 & am worried about not only liver enzymes being elevated(still waiting on lab results) but with cerebellum damage as well. I’ve been having balance problems lately & suspect there may be some permanent damage as this has been a recent problem for me even before I was recently hospitalized for pneumonia last month.

    I have a CT scan coming up(just had an EEG Friday) to check against my 08 scan and I’m just dreading the results.My Neurologist recently took me off the Dilantin in favor of keppra while I was in the hospital due to high LFT’s but, after a grandmal seizure a week ago Saturday & switching to lamictal XR she put me back on the Dilantin as well at the same 400 mg dose while waiting for the lamictal XR to build a level. I so want toget off the Dilantin ASAP and am even willing to take the risk of another grand mal in favor of hoping the lamictal XR will work just as well without these side effects.

    Like

    Comment by Michael Zell — June 24, 2013 @ 4:24 PM

    • Well, if it will give you any comfort, Lamictal XR has been VERY good to me.

      And I hope it works for you. Because Keppra isn’t exactly user-friendly either. 😦

      Like

      Comment by Phylis Feiner Johnson — June 24, 2013 @ 6:13 PM

      • Keppra switch due to new Dr. causes 1st seizure in over 25+yrs-Dr. wouldnt agree. LOST CAREER as Licensed/Certified Auto Mechanic-made good $$-still wait to get license back.Tests Done-only about 4EEGs 2CT scans-for Dr. Well,still sit on butt since Dr. to lazy to go further. OE Dr. unfortunately retired-he was so caring,he got me involved in career. NEW DR.-IDIOT!

        Like

        Comment by Ed Hricak — September 17, 2013 @ 11:10 AM

  9. It was back in 92-94 that I took dilantin. It wasn’t tell after 4 years they realized that it was lowering my white blood-cell count to a dangerous level. They thought it was the dilantin and the tegrotol mixed that was causing it. But they tried me on just one or the other, the dilantin kept lowering the count. That and neither med. would control my seizures by themselves. If some are interested in the types I have… (Absence, Atonic, Atypical absence, Aura, Clonic, Complex febrile, emotional, febrile,focal,gelastic, generalized-onset, myoclonic,nocturnal,partial(both symple an complex),Visual reflex,Secondarily Gen., Subtle, tonic and tonic-clonic, + status epilepticus

    Like

    Comment by Justin — June 24, 2013 @ 4:27 PM

    • Oy. So what are you taking now? And is it successful?

      Like

      Comment by Phylis Feiner Johnson — June 24, 2013 @ 6:07 PM

    • Dilantin has been only Med to control my seizures,kept me in my career. Dr. tried switching and-SEIZURE. Guess everybody different. Ed

      Like

      Comment by Ed Hricak — September 18, 2013 @ 12:45 PM

  10. Phyllis,

    Many of us have been & still are totally consumed with & paranoid from Grand Mal seizures, therefore too pre-occupied with controlling our grand seizures with ANYTHING UNDER THE SUN, never realizing the side-effects of our medications can be as deadly as our grand mal seizures.

    Therefore, Thanks for your informative article, many of us are learning to check & double-check, whether our prescriptions are worth the nightmare they are made to cause or the mercy we have come to expect from the perception.

    Lady,
    Your vigilance is a miracle.
    KEEP THE LIGHT ON 🙂 🙂 🙂

    Like

    Comment by Gerrie — June 24, 2013 @ 6:56 PM

    • Well, I’ve been there. Thin and falling out hair. (After I had to cut it short, I kind of got used to it. Less maintence!)

      Galloping gum rot. (I still see the periodontist every three months.)

      But I was stuck between the devil and the deep blue sea.

      Phenobarbital or Dilantin? I thought I was choosing the lesser of the two evils.

      But maybe not!

      Like

      Comment by Phylis Feiner Johnson — June 24, 2013 @ 8:11 PM

      • Hang in there,,, Phylis, 🙂

        You have a come a long way from uncertainty.

        Phylis, When many of us came up with Epilepsy, we had no idea where, when, what & how to make it to the next day.

        Thank you for sharing your experience, we’re reaping the benefits of TREASURE TROVE, you have accumulated through out all those years.

        For many of us, your devotion to the STRUGGLE fighting Epilepsy has made it a whole lot easier to cope with this nightmare, finding hope & answers to many questions & ordeals we had to learn from scratch, in living with Epilepsy.
        Therefore, going threw your ordeals, you’ve made many of us the beneficiaries of your experience.
        NOT TOO MANY PEOPLE IN THIS WORLD can do what you are doing & nor say that,,,, “Well, I’ve been there”.

        Hang in there, Phylis, , WE NEED YOU,,, 🙂 🙂 🙂

        Like

        Comment by Gerrie — June 24, 2013 @ 10:02 PM

      • YES WE SURE DO-PHYLIS #!. Ed

        Like

        Comment by Ed Hricak — September 18, 2013 @ 12:47 PM

    • ALL I CAN SAY-THANKYOU VERY VERY VERY MUCH-Phyllis-#1. Very glad people like you CARE! THANKYOU Ed

      Like

      Comment by Ed Hricak — September 17, 2013 @ 11:13 AM

      • First of all, I have replied with comments about long-term use of Dilantin. I have recently been switched to Vimpat, and am still being tapered down until I will eventually be off of Dilantin. I also take 2500 mg of Depakote per day.
        I have grand mal seizures.
        When my neurologist switched me to Vimpat I had been having peripheral neuropathy in my feet (which I still have, to a degree), I’d had a rash on my arm (which he told me was not of concern because the so-called Dilantin rash usually covers the body and is not isolated to one area). I have also been have tremors in my left hand, which he is watching. He says that this is more a side effect of Depakote. I was continually having toxic free levels of Dilantin. These are the reasons he decided to switch me. Frankly, I can’t wait to be off of Dilantin. I only hope the transition continues to go smoothly.
        There are many other anti-epileptic drugs. Doctors should be talking about options with their patients and deciding which would be the best for each based on their individual needs and the efficacy of the drug/s.

        Like

        Comment by Maggie — September 18, 2013 @ 5:01 PM

      • I have been on Dilantin approx. 40yrs-TOOK CARE of MY SEIZURES-until,until IDIOT Dr. i seeing SWITCHED me to KEPPRA. Almost right away-SEIZURE occurs. Lost my job as Professional CERTIFIED LICENSED AUTO MECHANIC w/2yr college degree in Auto Technology. THANKS DOC-i am now sitting HOME on my ASS,not DRIVE YET. THANKS IDIOT Dr. for HELPING ME-HELPING ME have a SEIZURE. Back on DILANTIN-HURRAY,SEIZURE FREE. Now if i could only get back to my PROFESSIONAL/LICENSED/CERTIFIED CAREER. Time to find Dr. that CARES!!!!

        Like

        Comment by Ed Hricak — September 19, 2013 @ 9:02 AM

  11. And to be honest Gerrie, this “family” is the reson I get up in the morning.

    If I can just help one person each day, then at least we’re better off than the day before.

    Thanks for all the love and caring…

    Like

    Comment by Phylis Feiner Johnson — June 25, 2013 @ 8:20 AM

    • As you can see the FLOOD TO THIS SITE, Phylis, many of us have LEARNED TO COPE with this menace from you.

      YES, ended you are taking care of the FAMILY, far more BETTER than our own Doctors, families & friends, who are too busy living their lives, avoiding being burdened, having to put up with our misery.

      TRUST ME PHYLIS, For many of us, this family is our ONLY FAMILY, who understands & come to share our agony & despair, since Epilepsy left us with NO families & friends to call our own.
      Many of us have LEARNED TO COPE with this menace from you &

      Thank you for your devotion to our misery.
      CHEERS :-):-):-):-)

      Like

      Comment by Gerrie — June 25, 2013 @ 10:41 PM

      • I trust Phylis-SHE CARES and MAY BE OUR ONLY HOPE. PHYLIS-DONT LEAVE US. Ed

        Like

        Comment by Ed Hricak — September 17, 2013 @ 11:36 AM

  12. Gerrie, it’s all of us and our collective experiences that help us learn, share and help each other out.

    Present company included! After all, without you, where would we be?

    Like

    Comment by Phylis Feiner Johnson — June 26, 2013 @ 9:35 AM

  13. When I was first diagnosed, I was in status epilepticus or generalized seizures and they gave me Dilantin. When I went to have another EEG it indicated I had partial- complex seizures on the left side but had a funny rash and they kept me on the cream to help the rash. That was in 68! Things have changed, medications have changed and officially told I have a rash and changed to phenobarb. Sedation city! I now know my abnormality is a birth defect in the ventricle. Things keep changing but they are getting better! Just got out of the monitoring unit, I will not give count. It actually was relaxing. The staff was great. I know what to bring for me and my hair thank you Phylis!

    Like

    Comment by Toni Robison — July 8, 2013 @ 6:53 PM

  14. Did you have Steven-Johnson’s Syndrome?

    Steven-Johnson’s Syndrome — a danger for those on Dilantin or Lamictal

    https://epilepsytalk.com/2009/10/17/stevens-johnson-syndrome-a-danger-for-those-on-dilantin-or-lamictal/

    It’s (almost) funny. In my support group, one of the most frequent questions is: “How do I get that goop out of my hair.”

    The best solution I’ve read is: Downy Fabric Softener might take the glue off. Hey, it takes wallpaper glue off easily. Why not giver it a try? 🙂

    Like

    Comment by Phylis Feiner Johnson — July 8, 2013 @ 7:53 PM

    • Baby shampoo and tomorrow Downy Fabric Softener! 🙂 Thanks

      Like

      Comment by Toni Robison — July 8, 2013 @ 10:02 PM

  15. I recently got a second opinion from a neuro about going back to Dilantin, and I mentioned how nervous my other neuro got about my levels being on the low end of the therapeutic range. The new neuro told me as long as I’m not having seizures not to worry about the therapeutic range as it means NOTHING. He said it was developed by two neurologists long ago, sitting in a bar and comparing general notes, “how much do you give your patients?.. Ok, this is how much I give mine.. This will be the reference range..”

    Like

    Comment by Doug — August 21, 2013 @ 12:15 PM

    • Good One,,, Doug 🙂

      So much for Medical treatment,, “sitting in a bar and comparing general notes, “how much do you give your patients?.. Ok, this is how much I give mine.. This will be the reference range..”

      Any wonder my Dilantin “range” ain’t as good as it used to be, since my Pharmacy keeps coming up with “GENERIC phenytoin”, instead of “brand name Dilantin”, I’ve been taking for more than 15yrs, with somewhat satisfactory result, controlling my grand mal seizures.

      Imagine hoping to CONTROL my grand mal seizures & just ending up with Grand Mal seizures & more,,,

      “Note: This document contains side effect information about phenytoin. Some of the dosage forms listed on this page may not apply to the brand name Dilantin”.

      Dilantin Side Effects
      Generic name: phenytoin

      It looks like,,, It’s time to go back to the Neurologist & INSIST on brand-name-Dilantin with all it’s nightmares,,,, “as long as I’m not having seizures not to worry about the therapeutic range as it means NOTHING”. 🙂

      Thank you for sharing your experience.

      Like

      Comment by Gerrie — August 21, 2013 @ 5:06 PM

      • Patients Need a Clear DEA Timeline for Epilepsy Treatments
        Ask DEA to Provide Access to Epilepsy Treatments
        Take Action!
        Patients need clear timeline for new approvals

        The Epilepsy Foundation recently sent a letter to DEA Administrator Michele Leonhart expressing concern about the lack of transparency and certainty in the DEA review process and requesting that the agency review its policies, processes, and timelines so patients and their physicians can know with more certainty a timeline for availability of these needed treatments. Innovation and access depend on a clear timeline. Join us in contacting the DEA by completing the letter below or clicking on Take Action above. http://capwiz.com/efa/home/?CFID=9194250&CFTOKEN=39454868

        Like

        Comment by Gerrie — August 21, 2013 @ 5:12 PM

      • Gerrie,

        RE: Drug substitutions, this letter may help…

        Prevent Medication Changes…

        https://epilepsytalk.com/2011/09/14/prevent-medication-changes/

        Like

        Comment by Phylis Feiner Johnson — August 21, 2013 @ 5:57 PM

      • WAS TAKING DILANTIN SINCE 1st seizure,unfort. Dr. retire,new Dr. come by-SWITCH to KEPPRA. SOON AFTERWARDS-SEIZURE,DRIVING. Lose drive license and CAREER as PROFESSIONAL LICENSED CERTIFIED AUTO MECHANIC w/2yr college Degree. Back on dilantin-all ok. BUT-Dr. too LAZY to fill out paperwork so i can DRIVE. Unfortunately CAREER over. THANKS DOC!! THINK WE SHOULD GET HIM TO READ THESE COMMENTS-MAYBE HE WILL KNOW WHAT NOT TO DO. Bunch EEGs done trying to get Drive License Restored-NOTHING YET! Ed

        Like

        Comment by Ed Hricak — September 17, 2013 @ 11:21 AM

      • Was seizure free very long time on Dilantin,oe Dr. retires,new Doc switches me to KEPPRA-SEIZURE. Still sit on butt even though back on Dilantin,wait for drive license. LOST JOB-CAREER-as CERTIFIED LICENSED AUTO MECHANIC 2yr College Training. OLE Dr. no want to listen to how he screwed me up-THANKS DOC,guess i will seeing you for$$ now. Ed

        Like

        Comment by Ed Hricak — September 17, 2013 @ 11:41 AM

      • I was switched from Dilantin-CONTROLLED SEIZURES/KEPT AWAY to Keppra-STARTED SEIZURES. Ed

        Like

        Comment by Ed Hricak — September 18, 2013 @ 12:50 PM

  16. Thanks so very much Gerrie. I just added the “Take Action” link.

    Like

    Comment by Phylis Feiner Johnson — August 21, 2013 @ 5:53 PM

  17. Gerrie,

    Your physician should be able to insist the pharmacy give you brand name dilantin. Thats what mine did back when I took it. And there is really no reason not to since the brand name drug has been around for so long that the cost of the brand name is not bad at all, so I don’t get what the excuse is for going to generic with that particular drug in the first place.

    Like

    Comment by Doug — August 25, 2013 @ 3:01 PM

    • Yes Doug,
      While I NEVER knew nor paid much attention to the difference between brand name DILANTIN nor the substitute “GENERIC phenytoin”, the DRAMATIC increase in my seizures & sudden disoriented “hallucinating” disorder since the substitution of my meds immediately made me NOTICE, there is drastic change, making it very difficult to control my seizures,

      I tried to make SENSE of the whole NEW ordeal but I can ONLY trace the change to medications, from the brand name Dilantin to Generic substitution.
      .
      Therefore, having NOTICED drastic change in control of I’m my seizures, I’m finally pleading with my neurologist & Pharmacy to keep me in the same brand name Dilantin I’ve been prescribed to for the last 15yrs, with satisfactory result in controlling my seizures.

      The Pharmacy seems to keep RUNNING OUT of brand name Dilantin.
      Therefore, I would rather switch Pharmacy & pay more for the brand name than having to risk all these ordeal, all over again.

      Thank you Doug & Phylis for coming to my rescue.

      Like

      Comment by Gerrie — August 26, 2013 @ 10:24 PM

      • My guess is the pharmacy keeps running out because there isn’t much demand for the name brand because everyone’s on the generic.

        My suggestion is to tell the pharmacy that you’re going to need whatever quantity of Dilantin a month.

        Can they accommodate you? If not, you’ll go to another pharmacy.

        Weirdly enough, when my pharmacy kept on running out of Buspirone, I found a heft supply at the grocery pharmacy!

        Who would have thought?

        Like

        Comment by Phylis Feiner Johnson — August 27, 2013 @ 7:43 AM

  18. Yes Doug, that’s what Prevent Medication Changes is all about…

    https://epilepsytalk.com/2011/09/14/prevent-medication-changes/

    It’s a letter that has been created by the Epilepsy Foundation to make explicitly sure that no substitutions are made to your prescription without full consent by you and your doctor.

    You might want to make a copy of it for your files.

    Like

    Comment by Phylis Feiner Johnson — August 25, 2013 @ 3:46 PM

    • Thanks Doug & Phylis,
      This has been totally unexpected experience, disturbing to know, we could be EXPENDABLE for entrusting our well-beings for “medical establishments”, far more INTERESTED in mighty-dollar than controlling our seizures.

      “The pharmacy running out” of the original prescription should have been responsible enough to let patients know, replacing with “generic” can & may cause drastic change to the patient’s well beings.

      For God sake, OUR LIVES DEPEND ON THESE PRESCRIPTIONS. Therefore, the Pharmacies should NOT gamble with our lives,

      I guess, It’s time to take total control of our prescriptions, than having to hope, the Pharmacies will deliver accordingly.

      Like

      Comment by Gerrie — August 29, 2013 @ 4:12 PM

      • It is SOOO WONDERFULL to know others same situation i am. My oe dr. kept me seizure free,new Dr. come in,changes Meds-SEIZURE occurs! Worst off he wouldnt admit his fault?? I lost Career as Certified Licensed Auto Mechanic w/2yr college Training,all Licenses. THANKYOU ALL for supplying ways to get back to begin. Now all i need to do is CONVINCE DR. Ed

        Like

        Comment by Ed Hricak — September 17, 2013 @ 11:27 AM

  19. One of my docs has suggested using a mail order service for meds. Then they know what you need and you have some measure of control. (Maybe.)

    Like

    Comment by Phylis Feiner Johnson — August 29, 2013 @ 4:42 PM

    • “mail order service for meds”, Sounds good idea.

      Like

      Comment by Gerrie — September 3, 2013 @ 7:38 PM

  20. DILANTIN has been #1 for me-on from start it has kept me seizure free. My Dr. tried to change me over to KEPPRA-SEIZURE from start and caused me to get in auto accident. Lost drive license which put me out of work being i needed license for my job-AUTO MECHANIC. Put back on Dilantin and now stay SEIZURE FREE!!

    Like

    Comment by lckyedd — September 3, 2013 @ 2:40 PM

    • CONGRATULATIONS lckyedd,
      You have come a long way from uncertainty 🙂
      It’s Inspiring, encouraging & reaffirming to hear from you & know that there is a way to control this menace.

      CHEERS 🙂 !!!

      Like

      Comment by Gerrie — September 3, 2013 @ 7:36 PM

      • My only problem now has been trying to get Dr. to fill out all paperwork so i can go back driving,would like to go back to work instead of sit home. All requirements have been met to re-gain license-Dr. just too lazy to fill out paperwork. WHY?? Ed

        Like

        Comment by lckyedd — September 4, 2013 @ 8:00 AM

      • Yes i have,but my problem now is trying to regain DRIVER LICENSE. Everything required of me has been done-just my Dr. wont provide proof. He cost me my job,career.

        Like

        Comment by lckyedd — September 4, 2013 @ 12:35 PM

      • lckyedd,
        If Epilepsy/Seizures can NOT knock you out, your Doctor can not.

        You have come from being knocked out.

        Therefore,,,Just keep fighting back, even if it means taking your Doctor to court.

        Wishing all the best !!!

        Like

        Comment by Gerrie — September 5, 2013 @ 7:22 PM

      • I think this is what is next. Have papers-LEGAL-that he signed that were to keep me working-working at a job making$16/hr-now sit home,not making a single $0.01,no drive. 2yr college degree in Auto Technology/Mechanics,Fully certified w/all licenses-all taken because good ole doc thought he should change my Meds that kept me seizure free and put me on a MED that caused seizure DRIVING. Had everything done required to have license back-NOTHING YET as doc. too lazy to sign his name. It maybe he doesnt know how to write since he so stupid that he screwed me up. KEEP TRYING Ed

        Like

        Comment by Ed Hricak — September 6, 2013 @ 9:03 AM

      • Yes but when NEW Dr. come in he switched to Keppra-SEIZURE! Lost my CAREER-Licensed Certified Auto Mechanic 2yr College Degree ALOT CERTIFICATIONS. UNFORTUNATELY-my IDIOT Dr. wont agree,here i sit WAIT for my DISABILITY/DRIVE again. WE all need to STAND our ground!! Ed

        Like

        Comment by Ed Hricak — September 18, 2013 @ 12:55 PM

  21. Call the receptionist and tell her you’re coming to pick up the papers. And what time you’ll be there.

    Explain your situation. (Usually, “I need your help,” is a good way to start) and go there IN PERSON for the papers.

    Like

    Comment by Phylis Feiner Johnson — September 4, 2013 @ 9:04 AM

  22. If Epilepsy/Seizures can NOT knock you out, your Doctor can not.
    You have come a LONG WAY, from being knocked out.
    Therefore, Just keep fighting back, even if it means taking your Doctor to court.
    Wishing all the best !!!

    Like

    Comment by Gerrie — September 5, 2013 @ 7:26 PM

    • Hi Gerrie-THANKYOU THANKYOU THANKYOU! I think this is what next-Dr. to COURT!!

      Like

      Comment by Ed Hricak — September 17, 2013 @ 11:46 AM

  23. Phylis,,, You are NOT going to believe this.

    I just went to my old Pharmacy to pick up my Epilepsy medications,,,, & EXPLAINED to the pharmacist that my ORIGINAL prescription drugs through out over a decade has been SWITCHED from brand name “Dilantin to Generic”, causing me to have seizures & DRASTIC SIDE EFFECTS, I never had before nor anticipated.

    Looking very concerned the Pharmacist asked me, if I had talked to my Doctor about this.

    I replied politely, but my Doctor did NOT switch my prescriptions, from “DILANTIN brand name” for over a decade.

    How about your Insurance paying for “brand name or generic?

    – My insurance ALWAYS paid for the brand name.

    Ok,,, Let me check your records, have a seat for minute, I’m going to call you by name.

    Sure, I got a whole day for myself.

    Five minutes later,,, Sir, You are right.
    Somehow, the Pharmacy running out of Brand name Dilantin since June, gave you generic instead.

    Therefore, starting today,,, I’M SWITCHING YOU BACK TO “DILANTIN BRAND NAME” & I will indicate in your records “DILANTINE ONLY”.

    The Pharmacist took back the “Generic” & replaced them with Dilantin brand name with-out ANY RUN-ARROUND I expected & I was worried about.

    Therefore, I’m so pleased for the Pharmacist’s understanding & going the extra-mile SWITCHING the drugs I came to pick up for.

    GREAT TO KNOW,,, There are good people out there !

    I take my hat off in respect & honor, to ALL helpful pharmacist out there,,,, Thank you !!!

    Gerrie 🙂 🙂 🙂

    Like

    Comment by Gerrie — September 9, 2013 @ 7:43 PM

    • Hi Gerrie,you wont believe this: My name is Ed,being treated for epilepsy since around age 5.Only had 3seizures until few yrs ago-Dr.,new Dr.,switches meds from DILANTIN to KEPPRA-SEIZURE,worst off-DRIVING. Lost job,Drive license. When working was make $16/hr-now $0. Was fully licensed Certified auto mechanic,2yr college degree,all mechanic licenses. Now i sit home wait to get Drive License back. Was told all i needed to do was have eeg done to get license back-5eegs later,Dr. still not send paperwork in to DMV. ANYBODY that can offer some assistance to me,anybody you may know,PLEASE have them contact me. THANKS Ed

      Like

      Comment by Ed Hricak — September 10, 2013 @ 8:33 AM

      • Yes Ed,
        Life with Epilepsy can be frustrating.
        And then, having to DEPEND on medical & hospital industry is another hurdle to overcome.
        Just like you ED, most Epileptic patients would tell you for sure,,, we have been there & done that !!!

        Yes Ed,,, Thanks to this GRACIOUS SITE, We ALL have come to share our experience, ordeals, dreams, nightmares, hopes,,, in supporting each other on how to overcome the EVERYDAY LIFE with Epilepsy & the hurdles of medical/hospital industry.

        Trust me ED, most of us know, what you are going through & it ain’t picnic.

        Yes Ed,,, Ever since you joined this HELPFUL SITE, we have been very UNDERSTANDING & SUPPORTIVE to your ordeals & advised you with MANY options,,, including writing a letter to the PRESIDENT OF USA, address & phone number provided.

        Yes Ed, With ALL THE OPTIONS AVAILABLE, NOW,,, It’s upto you to make a move from seeking help from your Doctor’s Office or State Medical Board or State & Federal Representatives or proceeding with court litigations.

        Yes Ed,
        You got too many options to choose from.
        Good Luck & Best wishes.

        Like

        Comment by Gerrie — September 10, 2013 @ 11:37 PM

      • TRUST is #1 w/everyone HERE! TRUST ME Ed.

        Like

        Comment by Ed Hricak — September 17, 2013 @ 3:03 PM

      • You forgot to leave address for Mr. Pres. of USA-WILL WRITE HUGE LETTER,hopefully will help not only me but EVERYONE else w/epilepsy!! Dont forget,i wait. Ed

        Like

        Comment by Ed Hricak — September 21, 2013 @ 9:14 AM

      • Ed,

        Just like you asked, here’s how you can correspond with the White House.

        The President
        1600 Pennsylvania Avenue NW
        Washington, DC 20500

        Comments: 202-456-1111

        Switchboard: 202-456-1414

        FAX: 202-456-2461

        http://www.facebook.com/WhiteHouse

        Best Wishes.

        Like

        Comment by Gerrie — September 23, 2013 @ 9:05 PM

      • THANKYOU!! Hopefully,HOPEFULLY i can make a HUGE change for us all,WE SHOULDNT BE HAVE TO BE GOING THROUGH THIS CRAP!! WE are NORMAL PEOPLE!!!   Keep you posted.    Ed

        ________________________________

        Like

        Comment by lckyedd — September 24, 2013 @ 9:51 AM

      • THANKYOU!! A very LARGE letter describing how bad i am getting screwed as well as ALL OTHERS who even have slightest signs of epilepsy has been sent. I sure do hope this will make the slightest,even the slightest,improvements for ALL of US!! We should be TREATED just as FAIR as everyone else!! Will keep you informed.    THANKS AGAIN   Ed

        ________________________________

        Like

        Comment by lckyedd — September 24, 2013 @ 10:54 AM

      • THANKYOU!! Hopefully i can EVERYBODY and instead MAKE these IDIOT Drs. SUFFER-LET US TAKE THEIR big$$$$!! They can sit home on ASS in house all day!!  ED

        ________________________________

        Like

        Comment by lckyedd — September 28, 2013 @ 1:49 PM

      • Anybody w/O’Bamas Address,or any other ADDRESS-PLEASE reply! Want to make sure my IDIOT dr. gets screwed,like he screwed me. All i would like is a few HUNDRED THOUSAND of the $$ he made by screwing other people like us,then i can sit back and LAUGH @him,tell him-SEE BUDDY,SEE HOW IT FEELS TO BE SITTING on your ASS doing NOTHING-not even DRIVE!!

        Like

        Comment by Ed Hricak — September 20, 2013 @ 8:54 AM

  24. Good for you Gerrie! You held your ground and succeeded!

    Here’s a letter that has been created by the Epilepsy Foundation to make explicitly sure that no substitutions are made to your prescription without full consent by you and your doctor.

    It might prove useful for someone. And you might want to make a copy of it for your files.

    Prevent Medication Changes…

    https://epilepsytalk.com/2011/09/14/prevent-medication-changes/

    Like

    Comment by Phylis Feiner Johnson — September 9, 2013 @ 8:03 PM

    • Trust me Phylis, I NEVER paid attention to the idea of SWITCHING prescriptions from “brand name to generics”,,, until I started having seizures again & could NOT imagine why, besides tracing the whole SETBACK to switching prescriptions.

      Yes Phils,,,
      I’m positively sure this letter will be saving lives.
      I ONLY wish I knew ahead of time.

      Like

      Comment by Gerrie — September 10, 2013 @ 11:47 PM

      • I wish a lot of people knew about it. But like everything else epilepsy, you have to dig, dig, dig.

        Believe me, I do a lot of digging! 🙂

        Like

        Comment by Phylis Feiner Johnson — September 11, 2013 @ 9:07 AM

      • SEIZURE FREE FOR LONG TIME-NEW Dr. come by,change Med.-seizure,1st 1 in over 15+ yrs. LOST CAREER w/LICENSES-AUTO MECHANIC. 2yr Associatte Degree-college degree started it. New Dr. come in-Neuro.-change meds-1st Seizure in over 15+yrs. Now sit home,no working,no driving-HAVE COLLEGE DEGREE,FULLY CERTIFIED in AUTO TECHNOLOGY. THANKS DOC.-now NOTHING!! Ed

        Like

        Comment by Ed Hricak — September 16, 2013 @ 12:16 PM

      • My oe Dr unfortunately retire,new Dr. try switch to GENERIC MEDS-SEIZURE,1st 1 in 20+ years,lost job/career as auto mechanic,fully licensed/certified. Got into career as computers came out in cars-OLDER MECHANICS NEVER WANT TO DEAL w/it. I had TRAINING/certifications etc. New Dr. change med,CAUSED SEIZURE,now i sit HOME!! Ed

        Like

        Comment by lckyedd — September 16, 2013 @ 3:57 PM

  25. Ed/Ickyedd,

    Albert Einstein once said,,, “Life is like riding a bike, you got to keep moving to stay in balance”.

    Like

    Comment by Gerrie — September 16, 2013 @ 6:18 PM

    • BRAVO, Gerrie!

      Like

      Comment by Phylis Feiner Johnson — September 16, 2013 @ 7:19 PM

      • Going back on Dilantin sure took care of SEIZURES,now all i need to do is have ole Doc realize how he screwed me,BIG TIME out of career. At least people like you understand-THANKYOU. Ed

        Like

        Comment by Ed Hricak — September 17, 2013 @ 10:56 AM

    • THANKYOU!!

      Like

      Comment by Ed Hricak — September 17, 2013 @ 2:01 PM

  26. SEIZURE FREE very long time now,all i need is Doc to fill out paperwork to have Drive License back. Would be nice to back to CAREER as CERTIFIED/LICENSED Auto MECHANIC-2yr+ College Training w/all licenses. Ed

    Like

    Comment by Ed Hricak — September 17, 2013 @ 2:00 PM

  27. yuck dilantin, i am severely allergic to it, made me feel awful.

    Like

    Comment by Crystal Cahill — June 11, 2014 @ 10:55 PM

  28. Ditto. 😦

    Like

    Comment by Phylis Feiner Johnson — June 11, 2014 @ 11:40 PM

  29. I am being tapered off of Dilantin slowly,and my neurologist has introduced Vimpat. I realize that the therapeutic level of Vimpat (5-10) is not well-established, but he still wants me to be at least in the low end. Whenever he increases my dose (because I am not even at 5), my level goes down. More Vimpat, lower blood level. This doesn’t make sense. Last level drawn on July 4, and it was 2.9, the lowest ever. I had been taking 250 mg twice a day, and he now changed that to 250 mg in the morning and 300 mg at night. He said that I might be a rapid metabolizer. He also said, “I treat people, not numbers. As long as you’re feeling good (which I am), I am not too concerned with these numbers.” Has anyone else had this situation occur?

    Like

    Comment by Maggie Mendus — July 12, 2014 @ 12:19 PM

  30. Well Maggie, as you said, as long as you feel good. And perhaps you are a rapid metabolizer.

    Do you think you may need a second companion drug, or is that not necessary?

    And as you know, (I don’t have to tell YOU), everybody’s chemistry is different. What’s high for one may be low for another.

    At least your doc is on top of things. That’s a GOOD thing. Wish every doc was.

    Like

    Comment by Phylis Feiner Johnson — July 12, 2014 @ 2:40 PM

    • Thanks, Phylis. Yes, my doctor IS on top of things. He’s terrific. I can email him and he emails back, usually the same day. Yesterday he even called me to discuss the current situation. I am fortunate indeed to have him as my doc. He has changed my dosage from 250 mg morning and night to 250 mg morning and 300 mg night. I started that yesterday. So far so good, but I don’t know what the levels are doing or going to do. Who knows? If things go the way they have been, maybe the next one will be even lower. But I still feel fine, and that’s apparently a better determinant of how to face this thing than the numbers.

      I am tapering off Dilantin, but I also take Depakote. He does not want to make two changes at the same time. His ultimate goal is to get me off of both Dilantin and Depakote in favor of monotherapy with Vimpat. He is so careful, as he knows I react negatively to the slightest change.

      Like

      Comment by Maggie Mendus — July 12, 2014 @ 6:52 PM

      • Wow! Everyone should have a doctor as attentive and wonderful as that!

        Let me know how the Vimpat goes. It certainly will be different. Along with monotherapy. Hooray!

        Like

        Comment by Phylis Feiner Johnson — July 12, 2014 @ 6:57 PM

  31. I have been on Dilantin for over 30 years. I have been through my share of seizures and now have rotten teeth. Dilantin is the enemy for this. I hate it!

    Like

    Comment by April Bower — October 27, 2014 @ 12:29 PM

  32. Ditto. Michele and I are the biggest enemies of Dilantin.

    Luckily I got off with only galloping gum rot which has been under care for 30 years by a periodontist.

    But there’s been no help for my long thick hair that turned so thin, I now have to wear it short. 😦

    Like

    Comment by Phylis Feiner Johnson — October 27, 2014 @ 12:55 PM

  33. I have been taking Dilantin for one year.I feel stuck not able to get started with daily routine. I sat watching TV all day .

    Like

    Comment by Blanchie — October 29, 2014 @ 4:04 PM

  34. Like you, I also felt like a zombie. 😦

    Like

    Comment by Phylis Feiner Johnson — October 29, 2014 @ 4:32 PM

  35. Janell, I think his problems stem from inconsistency in taking his meds. Dilantin can do real weird things to you. When I took too many at one time, I went into a coma!

    Do you have a daily pill pack for each med and time? Or can he set an alarm on his phone as a reminder? (That’s what I do.)

    And can you place a pill pack in his knapsack or suitcase so they are sure to go with him wherever he goes?

    Please make an appointment with the new doc and make SURE he’s on the right meds to begin with. That might be one of the problems with the side-effects. Don’t wait for him to do it — cause chances are that he won’t !!!

    Be proactive and insist. Or just make the appointment and tell him when he’s going (with you). Oftentimes, you need a second set of eyes and ears to describe what’s going on. (Tell him that.)

    Take a look at this article, it might help: Secrets to Better Care from Your Doctor https://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    Like

    Comment by Phylis Feiner Johnson — November 2, 2014 @ 9:49 AM

    • Phylis,
      I had been doing a lot of those things you suggested and going to appointments with him, making them etc. when he lived in Wisconsin. Now he lives in Seattle! He is 26 years old and should be doing these things for himself. He does well for awhile with all the suggestions, pill cases, phone alarms. I have given him small pill cases to have an extra dose in his pocket every day. That got lost, I gave him a pill holder. He claims it is somewhere in his new place but can’t find it. I tell him to get a new one but he says I have one. …Going in circles!
      His work told him to take what ever time off he needs, I want him to get in to see an epileptologist very soon. I don’t think he would get anywhere going to ER or Urgent care. We have had lots of experience with various neurologist who are not experts on epilepsy. They don’t really understand. I talked with Joel’s room mate and he understands that this behavior is far from his usual post seizure status. He said he would help him get an appointment and find his new insurance card which Joel can’t even remember if he got or not. I feel helpless so far away! I have calls in to his doctor in Milwaukee and the epilepsy center in Seattle. There is a great confernece in Seattle Nov. 8th that I want him to go to. He acts agreeable, but I am not sure he will follow through.
      Anyway, Thank you for your suggestions. If you or anyone else has an idea please let me know or if you think he can’t wait for an appointment and must be seen very soon let me know that too.
      Thanks.
      Janell

      Like

      Comment by Janell — November 3, 2014 @ 5:03 PM

  36. Janell, you’re making me angry. Here is a kid who’s acting like he’s 16 instead of 26, without any regards for himself, no less you, his roommate, his girlfriend or any of those who surround him.

    I’m afraid something drastic is going to have to happen until he sees the light and gives some value to his life. (Just what you’re worrying about, I know.)

    It saddens me to say so…especially to you. But I don’t think there’s any more YOU can do.

    Like

    Comment by Phylis Feiner Johnson — November 3, 2014 @ 6:22 PM

  37. I am 40 years old and I have been taking Dilantin since I was 17. I am starting to think that all my health problems may be due to the Dilantin.

    Like

    Comment by Dawn Cook — November 6, 2014 @ 8:38 AM

    • I want a new drug for seizure control. I have been siezure free for almost a year but the side effects of Dilantin are ruining my everyday life. I have just now realized that all my “health problems” are due to dilantin. Is is possible that my migraines, anxiety, back pain, memory loss, fatigue for no reason and so on…be related to Dilantin?

      Like

      Comment by Dawn Cook — November 6, 2014 @ 8:46 AM

      • One more thing…I also have experienced many rotten teeth. I have only my front teeth left and I have partials to fill in the rest. I do not have any molars left at all and my gums are trashed. I take care of my teeth and I feel like it’s for nothing because no matter what I do to keep them healthy, the get cavities then they have to be pulled sooner or later.

        Like

        Comment by Dawn Cook — November 6, 2014 @ 8:48 AM

  38. Dawn, everybody has different reactions to Dilantin. In my case, my hair fell out and I got golloping gum rot. (Saved by a wonderful dentist.)

    I’m not a doctor and I can’t even begin to tell you what drug to switch to. That’s a job for your neuro. But one good sign is that you’ve been seizure-free for almost a year.

    But I still think you shoud go to your neuro with a full time line of your problems and experiences.

    It’s never too late.

    Like

    Comment by Phylis Feiner Johnson — November 6, 2014 @ 9:22 AM

    • Thank you Phylis! It is just amazing how words from others help so much. I have not had anyone to talk to outside my family or my doc. I feel like I need someone who has gone through what I have. (concerning seizures as an adult). I feel like nobody in my town knows what I am talking about. I feel alone most of the time when it comes to seizures. I tried talking to my dad about my concerns with Dilantin and he says, “why change a medication when you have one that works?” This is hardly what I needed to hear. I know Dilantin keeps the seizures at bay but, I have the worst side effects. I am grateful that I found this site!

      Like

      Comment by Dawn Cook — November 6, 2014 @ 9:43 AM

      • Welcome Dawn! And please feel free to chime in with whatever is bothering you or any questions you have.

        We’re here to help — even if you need to vent! 🙂

        Like

        Comment by Phylis Feiner Johnson — November 6, 2014 @ 10:25 AM

      • Thank you so very much! You have no idea what this means to me!

        Like

        Comment by Dawn Cook — November 6, 2014 @ 10:26 AM

  39. Epilepsy Talk is a “family” of caring, sharing people. Welcome to the family Dawn! 🙂

    Like

    Comment by Phylis Feiner Johnson — November 6, 2014 @ 6:15 PM

  40. Hi to you all from Australia. I started looking for info on the possible side effects of Dilantin, and found your fantastic discussion. I’m 52 and I’ve been on Dilantin since about 1992. I know I get the peripheral neurophery in my feet because the damn thing keeps me awake at night ! Plus a few other side effects too. I’m more concerned though about the level of anxiety, and the vagueness that seems to be part of life now. And being tired most of the time.
    Something I haven’t seen in the discussion is a neurologist introducing new medications on top of Dilantin, which has happened with me. First Topiramate, then Gabapentin. Is that the case with others ? All 3 carry a warning saying they may cause drowsiness…
    Generally the seizures are controlled pretty well, although not one hundred percent. I still work and look after 2 kids, so life’s not totally stress free ! But I’m lucky to have a very understanding employer.
    Interesting to hear about Keppra too – I tried it and had exactly the same issues with mood swings. All the best.

    Like

    Comment by Chris — January 3, 2015 @ 7:27 PM

  41. Well, I can only say that…

    Dilantin made me an absolute zombie. My husband was on Gabapentin for severe neuropathy. All it did was pack on the pounds.

    I never took anything on TOP of Dilantin, because in those days (I’m 10 years older than you) there were no other options.

    However, it sounds like you’re doing and coping far better than I would in the same situation!!!

    Like

    Comment by Phylis Feiner Johnson — January 4, 2015 @ 8:54 AM

  42. My 1st 26 years of my life was taking Dilantin, at 7 months old, added with Meberal after 3 years old. After 26 years I saw no changes with petit mal seizures staying in my life, as I always was having them. So I go off all drugs and felt better with a petit mal happening once in a while. I did have 2 GRAND MALS in my 30 years, then all HELL broke loose in 1994 when my 4th GRAND MAL happened. To FWD today I see now HOW food chemicals like MSG, & others like it had caused my petit mals as an infant, kid, & teenage years,& over 21 when all foods then were the same as I was eating in the 1990’s but TODAY I know all those foods were toxic with MSG’s NITRATES, and other food additives, that are brain cell destroyers as all with seizures who reads this MUST or SHOULD read the brain information & FACTS that are proven by Dr. Russell Blaylock who use to be a top nuerosurgeon and he has seen WHAT the FDA has approved to be in all our foods, in his book THE TASTE THAT KILLS, which is mainly about ASPARTAME, however,,,, you can NEVER TASTE MSG !!! as you can not believe the FOOD LOGOS that say NO MSG! MSG FREE !! or NO MSG ADDED!!! Right,, it called and named by some other name, and you do not know it because there is NO TASTE TO IT !!!. So if you wonder WHY the seizures are always happening, LOOK AT ALL THE FOOD LABELS & LEARN what you may be doing to your precious & defenseless brain, when MSG’s & ASPARTAMES are attacking it daily. These ASD’s/AED’s never help when ASPARTAME & MSG are in the foods, and in most of these drugs as well, brand name or generics do not stop seizures. DO NOT IGNORE THIS. THIS IS REALITY FOR MORE THAN YOU CAN IMAGINE, IF YOU HAVE NOT CONSIDERED IT TO BE A REALITY IN YOUR LIFE, Neurologists & drug companies KNOWS these foods chemicals, additives & preservatives are THEIR BREAD & BUTTER, as we are just NUMBERS to help ADD MORE to all their bank accounts. As the saying goes,, FOLLOW THE MONEY TRAILS, THEN YOU CAN CONNECT THE DOTS. Monsanto, drug companies, P&G Food Retailers, TV & RADIO advertisers, Doctors …& etc….. You all can have the fun doing that, because there’s more. We’re just a number with money $$$$$$$, that they believe belongs to them. So what if they mess up over 60 MILLION peoples lives to get that MONEY.

    Like

    Comment by James — September 20, 2015 @ 8:10 AM

  43. James, I think we’re on the same page.

    Take a look at these articles:

    The Scandal of Aspartame

    https://epilepsytalk.com/2009/11/26/the-scandal-of-aspartame/

    MSG: Dangerous or Deadly?

    https://epilepsytalk.com/2009/10/08/msg-dangerous-or-deadly/

    Basically both act as neurotoxins, affecting the brain ad causing all kinds of havoc and irreversible disease.

    I think, reading the articles, you will agree.

    Like

    Comment by Phylis Feiner Johnson — September 20, 2015 @ 9:54 AM

  44. I couldn’t stay on it for even a month. My whole body was covered in hives and I felt like a zombie. I’ve been on Depakote for nearly 20yrs now.

    Like

    Comment by Catherine — January 10, 2016 @ 5:58 PM

  45. Do you think you had the beginnings of Stevens Johnson Syndrome?

    Stevens-Johnson Syndrome — a danger for those on Dilantin or Lamictal

    https://epilepsytalk.com/2009/10/17/stevens-johnson-syndrome-a-danger-for-those-on-dilantin-or-lamictal/

    Like

    Comment by Phylis Feiner Johnson — January 11, 2016 @ 9:16 AM

  46. I hated being on Dilantin and phenobarbital. I felt like a zombie.

    Like

    Comment by Dona B. — May 23, 2016 @ 2:53 PM

  47. Dona, I feel your pain! Make that two of us. (Plus probably a million more…)

    Like

    Comment by Phylis Feiner Johnson — May 23, 2016 @ 5:22 PM

  48. I have been taking 800 mg of dilantin a day for 1 year. My Dr increased it from 600 (for 4 years) after several seizures. I take 300 in the morning, 200 at noon and 300 at bedtime. After reading what others have gone through I’m thinking I now see why I’ve been having so many changes that I thought were from epilepsy. I need to talk to my Dr..again. If he doesn’t change my meds. I’m getting a new Dr.

    Like

    Comment by Brenda — July 25, 2016 @ 8:56 AM

    • Hi Brenda, I am 41 years old and I have been on Dilantin since I was 17. Before that, my doc had me on depakote. I was a young teen and partying was more important so I rarely took it. So that meant seizures…a lot. I ended up getting married at a very early age so my doc put me on dilantin. He said he was doing it because dilantin would be better on the baby if I were to become pregnant now that I was married. When I became pregnant, my doc put me on extra folic acid along with my prenatals. I guess the folic acid helps the Dilantin stay out of the baby’s system, so my doc said. All 4 of my children were born totally normal and I took dilantin, prenatals and extra folic acid regularly throughout all 4 pregnancies. During my first pregnancy I developed severe migraine headaches so my doc put me on topamax. It worked okay. I still take it. I take it on a better schedule now than I did back then though and it works much better now. Dilantin has been great ever since. Until my insurance was cut then I had to go generic which is phenytoin. I started having seizures like crazy on that one. My neurologist retired and I am having an extremely hard time finding another one, so right now my general practitioner is caring for me. He has sent referrals over to Dr. Gerrard for me but she is booked until January. I suppose I should take what I can get, right? On Mondays and Fridays I take 500 mg’s of Dilantin at bedtime with 50 mg’s of topamax and 4 mg’s of lorazepam (I also have severe anxiety) and 40 mg’s of omeprazole for GERD. On every other day except Monday and Friday, I take 400 mg of Dilantin and the same of all the others. Every morning, I take 2 mg of lorazepam and 50 mg of Topamax. Topamax also helps with seizures as well as migraine prevention. I know every person is different with how their bodies work so that’s why it just kills me to read that dilantin is such a bad drug for so many people. I’ve never felt zombieish or too tired from taking it. So, I am very sorry for the way Dilantin makes you feel. The ONE HUGE thing Dilantin has done to me is ruin my teeth. 😦 They are awful. I take care of them the best I know how and I still get cavities and my gums recede. I believe one of my back teeth is starting to get rotten. I rarely even drink soda!!! Sprite if I am sick and Dr. pepper if i am feeling like having a soda like once a month and it’s a can of soda…not a huge 52 ouncer from the gas station!!! Anyway, off subject here.
      I also have seizure triggers. If I don’t get enough sleep, if I watch t.v. too long or watch a movie with strobe lights, my diet, exercise is huge, stress is a biggie and I feel like the biggest one is keeping up with your dilantin levels. At my doctor’s office I go to know, I don’t need an appointment for labs…you just go in and tell them what you want, they draw your blood, then they call you and tell you what your level is. This is a huge for me so I can keep track of my own body since I don’t have a neuro. My levels need to stay in between 10 and 20. If it’s lower than 10, I will take 1 extra that night. If it’s higher than 20, I will skip a night. The way I work things works for me. I tell my doc what I do and he agrees with me. It also helps that my husband is a math genius so he can keep up with all that level stuff and how much to take and when…lol.
      One heads up…don’t ever take Paxil with dilantin! They don’t go together. Paxil raises the dilantin level and makes you feel so drunk that you wanna pass out and never wake up! Hence the lorazepam! Well, I wrote a novel. I guess I will let you go now. If you have anymore questions about dilantin, just give me a hollar! On here or facebook. I am Dawn Cook on facebook and my picture is me and my two sister dressed up as Dr.Seuss’s Thing 1,2 & 3…except our shirts say, Sis 1, Sis 2 and Sis 3. I’m easy to find!

      Like

      Comment by Dawn Cook — July 30, 2016 @ 9:42 AM

  49. Brenda, whether he changes your meds or not, a second (or third) opinion is always good.

    This link may help you find the appropriate doc:

    2016 Comprehensive List of GOOD Neurologists…Epileptologists… Neurosurgeons…and Pediatric Doctors

    https://epilepsytalk.com/2016/01/03/2016-comprehensive-list-of-good-neurologistsepileptologists-neurosurgeonsand-pediatric-doctors/

    Like

    Comment by Phylis Feiner Johnson — July 25, 2016 @ 10:26 AM

  50. I took dilantin for yrs. Not only were the side effects awful I continued to have seizures worse than without it. Tried different meds nothing would help. Saw new neuro and was told I had to change meds if I expected to survive one of my severe gran mal seizures again. Changed meds and haven’t had seizure since June 1st this year. When I hit utility pole and sent to hospital.

    Like

    Comment by faith noll — September 29, 2016 @ 12:05 PM

  51. That’s so sad. Just when you thought you were safe. 😦

    Like

    Comment by Phylis Feiner Johnson — September 29, 2016 @ 12:40 PM

  52. I am 45 yrs old. Had brain surgery for seizures at 21. Along with the surgery, and dilantin had no seizure activity at all. Became toxic to dilantin 18 mos ago., was taken off, then put on Vimpat, and depakote. Now have had one seizure in Jan of 2016, and 2 this month, October. I am going back to UCSF where I had my surgery 20+ yrs ago. Am very nervous, and depressed. These new seizures are grand mal, my old seizures were temporal lobe. I thought I was all done with this, and now it has all started up again. Has anyone out there ever been toxic to dilantin, and then been able to start it again?.

    Like

    Comment by kathy warnick — October 14, 2016 @ 11:15 PM

  53. Oh Kathy, the frustration and fear you must feel.

    I went toxic on Dilantin, but that was in 1969 when they didn’t do blood tests or really anything much at all. Not to mention carefully regulate dosage.

    I never went back.

    I wish I could give you an answer but I don’t have one to give.

    My experience is a far cry from yours, but I hope you find the right answer.

    Like

    Comment by Phylis Feiner Johnson — October 15, 2016 @ 9:23 AM

  54. To Everyone. I’m there with you. My life is fully engulfed with the concerns of avoiding grand mal seizures and has been for over 40 years and I wasn’t diagnosed until I was 16 (first grand mal) but found out I had petite mal seizures since birth. Just remember: We are all different. No two people with epilepsy are the same. My changes for example occurred because of a brain scar at birth that simply got bigger as my brain enlarged. Some have spots. Some have other reasons. I experienced- and still do- experience Auras, while being on Dilantin (500mg). I can tell 30 to 45 minutes before an Aura will occur. It then lasts for about 15 seconds and its over. Many don’t experience Auras at all. I have spoken to many but never met anyone who has the same exact situation as anyone else. Dilantin taken religiously, was the only thing that kept me grand mal seizure free after many many changes in medication. The only problem I have now is that my gums are getting bad. I brush, floss, rinse to the max and am now taking medicated tooth care products by the dentist. But I’m may need a change. I know of an individual that lost all their teeth at a younger age than mine. Does anyone know how to combat the poor gums issue?

    Like

    Comment by Joel N. — November 5, 2016 @ 10:14 AM

    • Welcome Joel and thanks for sharing your story.

      I also have galloping gum rot from Dilantin and I go to the dentist for a deep cleaning quarterly, plus a twice a year visit to the Periodontist, just for safety’s sake.

      But I have to admit, I’m one of the lucky ones and caught my dental problems at 30. (I’m 63 now.) So I got a head start on losing my teeth or any other dental disaster.

      Again, welcome to the family, Joel.

      Like

      Comment by Phylis Feiner Johnson — November 5, 2016 @ 2:39 PM

  55. My teeth are in terrible shape because of Dilantin. The med made me grind my teeth when I slept. I got a mouth piece but it would fall out a lot because I sleep with my mouth open.

    Like

    Comment by Tammy Wescott — November 11, 2016 @ 4:44 PM

  56. Well Tammy, at least you’re in good company. I got galloping gum rot and my beautiful, long hair fell out.

    It’s no party, that’s for sure.

    Like

    Comment by Phylis Feiner Johnson — November 11, 2016 @ 5:18 PM

  57. Phylis thank you for your good work keeping us up to date. I have a question for you and your readers:

    Background: After being on 400 mg a day of Dilantin (Yes I stick to the branded drug to avoid the the variations between different manufacturers of generic phenytoin) for over 40 years, I am trying, for the second time, to change over gradually to 800 mg of APTIOM. The reason is worsening peripheral neuropathy thought to be due to Dilantin. Luckily I have had no gum problems.

    Question: Any experience or advice about switching over gradually to Aptiom?
    Any advice as how best to control the symptoms of Dilantin induced peripheral neuropathy?

    Thank you!

    Like

    Comment by Michael H — December 23, 2016 @ 1:44 PM

  58. Michael, the only suggestion I can make — which you probably already know — is to titrate slowly from Dilantin to Aptoim.

    It takes 6 weeks for the meds to cross the blood/brain barrier.

    One aid for the peripheral neuropathy is TENS.
    Transcutaneous electronic nerve stimulation (TENS) doesn’t work for everyone, but many people like it because it’s a drug-free therapy.

    During TENS, electrodes placed on the skin send small amounts of electricity into the skin. The goal of this treatment is to disrupt nerves from transmitting pain signals to the brain.

    http://www.healthline.com/health/peripheral-neuropathy#Treatments5

    Like

    Comment by Phylis Feiner Johnson — December 23, 2016 @ 1:59 PM

  59. I was on Dilantin 10 years. It was bad on my teeth. It made me grind my teeth. I change to another med because it was not working.

    Like

    Comment by Tammy Wescott — December 30, 2016 @ 6:57 PM

  60. I was on it briefly, until I became toxic and went into a comma.

    But it was long enough for me to get galloping gum rot and for my beautiful long hair to fall out. 😦

    Like

    Comment by Phylis Feiner Johnson — December 31, 2016 @ 11:13 AM

  61. I have been taking Dilantin since the age of 6 and I am now 36. And the side effects are nothing compared to the seizures I was having. I drink 900mg every day. I guess I would have to say the worst side effect was the swollen gums. I had to have gum surgery on a couple occasions as a child. It is better now that I’m more meticulous about my oral hygiene.

    Like

    Comment by Vinenessa — June 7, 2017 @ 8:02 AM

    • I found that I had galloping gum rot from Dilantin, but thorough cleaning every 3 months has helped considerably.

      Even though I’m not on Dilantin any more, the damage remains. 😦

      Like

      Comment by Phylis Feiner Johnson — June 7, 2017 @ 8:19 AM

    • Taking Dilantin for seizures since start and remain seizure free,that was until new Dr. Changed to keppra and caused seizure which has now left me on disability. All requirements met to have license restored . here where I remain,have been unable to get anywhere, seek further assistance, was working as licensed certiffied auto mechanic w college degree making very good money. Any help here would be appreciated.

      Like

      Comment by Ed Hricak — June 15, 2017 @ 8:41 AM

      • Why were you changed to Keppra?

        Here’s an article you might find interesting, Ed:

        Keppra — What People Are Saying

        https://epilepsytalk.com/2010/10/15/keppra-what-people-are-saying-2/

        P.S. What about a second opinion?

        Like

        Comment by Phylis Feiner Johnson — June 15, 2017 @ 9:02 AM

      • New Dr. Who got lawsuit filed on him,OE Dr.Greatest Dr world could ever have retired. Very 1st appt. New Dr changed me over and the second dose of keppra caused my 1st seizure in over 30+ years driving to work. End up get in bad accident. Drive license suspended due to accident . was working college career but now on disability, don’t need to be. Dr sent all paperwork to employer for some stupid reason. Looking for assistance here,anybody anybody at all who can help,please contact me.. Have had 6 EEG done to prove I am100% healthy to have drive license restored,was told need paperwork filled out. Here I am sitting on my ass doing nothing,$1000s of dollars in mechanic tools sit in my garage, guess they will just rust! Anybody who can assist me I would greatly appreciate the help. Should I go back to lawyer? Please assist me. Ed

        Like

        Comment by Ed Hricak — June 15, 2017 @ 10:17 AM

      • Ed, I think you do need legal help. And papers from your neurologist that you are free and clear.

        Or do you need to start out with another neurologist?

        Like

        Comment by Phylis Feiner Johnson — June 15, 2017 @ 12:48 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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