Epilepsy Talk

Dilantin — What People Are Saying… | December 9, 2020

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.

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.”

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Resources: Epilepsy patients themselves.


65 Comments »

  1. I’m taking 200mg twice a day of dilantin and 650 mgs of trileptal and 9.3ml Epidilox . I have been through every drug these are what the doctor has settled on

    Liked by 1 person

    Comment by Angela S Marshall — December 9, 2020 @ 3:26 PM

  2. Our son has been in Dilantin for 3 years and it has been good for him so far. He does experience some short term memory issues but overall it seems to be good. If there was a med that could stop his seizures this effectively without the side affects then let me know.
    He has to have one that is a sodium channel blocker.

    Liked by 1 person

    Comment by Tami — December 9, 2020 @ 3:27 PM

    • Sigh. I wish there was a med without side-effects, but every drug affects individuals in its own way.

      The side-effects may be different, but they’re present.

      Like

      Comment by Phylis Feiner Johnson — December 9, 2020 @ 4:07 PM

  3. All these AED drugs have side effects. Decrease in bone density is common. That’s why I workout all the time and take calcium tablets as well.
    I take Phenobarbital instead of Dilantin. Tried decreasing the amount since it’s addictive but ended up with a lot of Grand Mals when I did so had to get back on them again 😦

    Liked by 1 person

    Comment by prasadmok — December 9, 2020 @ 3:46 PM

  4. I was started on dilantin and phenobarbital when I was 10. 25 years later I was switched to Depakote. I have osteopenia and have lost most of my teeth. I can’t say much about cognitive effects but have lived with the depression common with aeds

    Liked by 1 person

    Comment by Michael Bowles — December 9, 2020 @ 3:59 PM

  5. Michael, do you take any anti-depressants? I take one (an oldie but goodie) called Effexor.

    Like

    Comment by Phylis Feiner Johnson — December 9, 2020 @ 4:20 PM

  6. I continue to take issue with the term “side effects.” What happens are effects of the drug, period. By calling them “side effects,” the manufacturers, dispensers, and prescribers are suggesting we not mention our discomfort. Or so it seems to me.

    Liked by 2 people

    Comment by HoDo — December 9, 2020 @ 5:05 PM

  7. “Shut up and take your medicine!”

    Like

    Comment by Phylis Feiner Johnson — December 9, 2020 @ 5:16 PM

  8. When I had my surgery, they started asking me what pill I wanted to stop taking. I first went off Trileptal because of dizziness and double-vision then Keppra because of the rage but I didn’t want to let go of my Dilantin. It was my security blanket. I had fairly good control of seizures and I had been taking it for 35 years. Then 5 1/2 years after surgery I get the warning that my Vitamin D is at a dangerous level and Dilantin could be the cause. That was the only reason I stopped taking it.

    Then I noticed my gums weren’t swelling anymore so I had one less problem and was totally off meds so I guess I should have tried going off Dilantin a lot sooner.

    Oh and I was on Phenobarbital, too, but I went off that about five years after I started.

    Liked by 2 people

    Comment by Ed Lugge — December 9, 2020 @ 5:22 PM

    • Yes I know that feeling!!!!! The dental surgeries, broken bones, arthritis and on and on. I finally told my new neurologist “why can’t you just simply prescribe me lorazepam!! It does it job just as fast if not faster and helps way more??”. I’m on 400mgs/daily and 1600mgs/daily of TEGRETOL cr only!!!!! Plus vitamins and minerals as well!

      Liked by 1 person

      Comment by Kathy S.B — December 13, 2020 @ 9:09 PM

  9. Unfortunately, I got galloping gum rot while on Dilantin. 50 years later, I’m still going to the dentist for deep gum cleaning.

    It hurts, but is much more acceptable than losing my teeth!!!

    Like

    Comment by Phylis Feiner Johnson — December 9, 2020 @ 6:03 PM

  10. I’ve lived with seizures now for over 60 years. Up until age 31, I was taking Dilantin and in those 31 years I had only 3 GRAND MALS, but many petit mals, which I was told by my doctors in those years that petit mals always can turn to GRAND MALS as I get older. So I go 26 years with taking MEBERAL & DILANTIN with no control of petit mals & had only 3 GRAND MALS in 26 years with Meberal & DILANTIN & 30 years with DILANTIN & PHENOBARBITOL when they dropped the Meberal saying that a WEAK BONE MARROW can be the result of those 2 drugs. So I was said it was time to go OFF DILANTIN & try just Phenobarbitol. More GRAND MALS started to happen as in 3 years, I had 4 GRAND MALS & I had 3 GRAND MALS in 30 years when I was taking DILANTIN. I was told 5 years ago that a drug like DILANTIN would not work the same for me today as it did back 30 + years ago & stop all GRAND MALS I have now, & just limit petit mals if I would have them more than GRAND MALS if I could get back on DILANTIN. Dilantin use to been cheap like a 3 months supply for maybe $25.00, but VIMPAT, LAMICTAL, KEPPRA & others are like over $500.00 to $900.00 a month,, Sure Dilantin will never work for anyone anymore today. It’s too cheap to help anyone.

    Liked by 1 person

    Comment by James D — December 9, 2020 @ 6:26 PM

    • As you can see from Dr Fisher’s talk, https://youtu.be/D5qYsK_UXhA Neurologists take a guess as to what drugs may work for each individual.
      I ended up with epilepsy in Nov 2014 and was taking on a lot of drugs to stop my Seizures.

      Right now I am still on a lot of drugs – Lamotrogine – 500mg, Phenobarbital – 120mg, Levitracetam/kepra – 3000mg every day and still have Seizures pretty much every day and Grand Mals between 2-4 every month. I consider myself lucky if I don’t have any Seizures 3 days in a row.

      Tried getting off some of these drugs and ended up with a lot of Grand Mals. Not sure if I will ever be off these drugs. Given where my Seizure focus is I am not a good candidate for surgery. My best hope is some of these electrical stimulation devices that are being experimented come to fruition.

      Liked by 2 people

      Comment by prasadmok — December 9, 2020 @ 8:22 PM

      • Are you talking about deep brain stimulation?

        Deep Brain Stimulation (DBS) — Reducing Seizures By As Much As 50%

        https://epilepsytalk.com/?s=deep+brain+stimulation

        Like

        Comment by Phylis Feiner Johnson — December 9, 2020 @ 10:23 PM

      • Hi Phylis,
        I am not looking at DBS. I don’t want anything implanted in my brain since it’s not clear/definitive that will help prevent/reduce Seizures.

        I am looking for devices like rTMS or tDCS which are more like coils you can put around your head that sends electrical signals. These are non-invasive devices, so if they don’t work you don’t have to use them.

        Liked by 2 people

        Comment by prasadmok — December 9, 2020 @ 11:33 PM

      • Wow!! I have never heard of them before!!

        Liked by 1 person

        Comment by Kathy S.B — December 13, 2020 @ 9:20 PM

  11. I was on Dilantin many years ago in 1960 .but was put back on again in 2003.the later was much better.the Dilantin has been improved much over the years.i had mysoline and Tegretol they were horrible.always drugged out.

    Liked by 2 people

    Comment by lanceminnis — December 9, 2020 @ 8:08 PM

  12. Hodo, that’s a great point. Side effect makes it sound like a lovely aftereffect, a side dish. In fact it’s effect causes ongoing and long term effects to ones body, mind and soul. They don’t go away even if one stops taking dilantin, phenobarbitol, etc, etc.

    Liked by 2 people

    Comment by skolly9 — December 9, 2020 @ 9:17 PM

  13. or perhaps a side of memory loss, or maybe just for tonight we have a hallucination. Medium well with a few flashing lights. OK, enough lol

    Liked by 1 person

    Comment by skolly9 — December 9, 2020 @ 11:02 PM

  14. I’ve been on just about every drug,incl pheno as the first one which did nothing to control, I’m feeling like a human guinea pig, but not Dilantin, nothing works, they all caused side effects, Diazepam for some unknown reason does work, but after 40yrs of bad diagnosis and treatment I demanded reviews, a proper diagnosis, but no one can decide just what is exactly wrong with me. I’ve refused to try any more drugs, I’m so fed up with taking poisons. My sis had seizures after skull fracture, given phenobarbitone, she’s had a good life, well controlled, good social life, qualifications and jobs, but it didn’t do anything with me

    Liked by 1 person

    Comment by Gail Barry — December 10, 2020 @ 5:36 AM

  15. I got an allergic reaction to Dilantin

    Liked by 1 person

    Comment by Cindy — December 10, 2020 @ 7:55 AM

  16. I had a seizure last night that beat me up, my neck hurts, my nose feels like it’s been punched, my big toe hurts and 4 the next 3 days i’ll need to deal with the after affects of my emergency pills UGH!@#$

    I had to get off of dilantin because of the side effects, the main one was it caused me visual aura, the type where a cresent moon would slooowly float accross my vision, which i hadn’t had since before they took my tumor out.

    Liked by 1 person

    Comment by Zolt — December 10, 2020 @ 1:51 PM

    • Hi Zolt,
      I had similar issues with my vision when I was on some of these AEDs. Dr. Fisher indicated this was due to the drugs I was taking. He asked me to split them. Some in the morning and some in the evening and I did not have these vision issues after I did that. Not sure if this helps your condition if you split them up like I did.

      Liked by 2 people

      Comment by prasadmok — December 10, 2020 @ 2:09 PM

      • Hey Prasadmok, Reducing the amount i took may have helped, but that was not the only side effect i was feeling. At the time i was only on Dilantin, nothing else. So i asked my doc to switch me to something else and that was lamotrigen, which was another drug that messed me up, my seizure where 5x as bad. Then he put me on gabapentine and since than Everything has been going wonderful. Although right now i don’t have enough gabapentine, since i didnt’ have insurance this yr, hopefully i will next yr.

        Liked by 2 people

        Comment by Zolt — December 10, 2020 @ 3:30 PM

      • For me it was dilantin that caused the visual auras, since when i stopped taking it the auras stopped.

        Liked by 2 people

        Comment by Zolt — December 10, 2020 @ 3:40 PM

      • I tried to do that!! However are having have to keep going back to my regular dose I stopped trying. For me my fear was messing around too much with my medications meant I was messing around with my body in ways I wasn’t prepared for!! I will not lie there’s no way I will even try keppra, however I did try toperimate and that was a complete bomb which left me with a forever lump on my leg and then switched to another drug which was also a complete bomb. So in the midst of trying to give myself time to heal and time to catch my breath in between each drug I finally just sucked it up and stopped trying. Then I was put on a combination thc/cbd (which didn’t go well either my left side went numb) only to be told it was supposed to be cbd!! So now the cbd is there (but secretly) I am extremely apprehensive now!!!!!!! Yes either due to the long term use of Dilantin (42 years) or my active life and injuries I now have arthritis in my neck and upper back. But I just need to catch my breath and maybe get a bit more brave first then I will try again with the cbd!!!!! For now (even though it will never happen) I did ask my NEW FEMALE NEUROLOGIST why she can’t just take me off all these medications and just give me lorazepam instead and I should be good?? My thoughts are at least it’s just one medication over all of these everyday!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — December 13, 2020 @ 9:37 PM

  17. Keppra was the real monster , dilantin has helped me function

    Liked by 2 people

    Comment by John Tiefenauer — December 10, 2020 @ 1:56 PM

  18. Oh Zolt, how terrible. I hope this is an isolated event and that you’re healed and feeling better soon.

    Dilantin didn’t exactly sound like a picnic either.

    Like

    Comment by Phylis Feiner Johnson — December 10, 2020 @ 2:07 PM

    • Those were my growing pains when i was first trying different meds. First 3 were no good for me, but the last one i tried Gabapentin works quite well i think.

      Liked by 2 people

      Comment by Zolt — December 10, 2020 @ 3:33 PM

      • Epilepsy is such an unknown. Drugs that work for some may not work for others. When Neurologists prescribe drugs they are more like just picking some that may work. If they don’t work they prescribe some other ones. It’s more like a gamble as to what may work. Learned this from my neurologists Dr Fisher. https://www.youtube.com/watch?v=D5qYsK_UXhA

        Liked by 2 people

        Comment by prasadmok — December 10, 2020 @ 3:47 PM

      • I agree!! Thank you Prasadmok 😊

        Liked by 1 person

        Comment by Kathy S.B — December 13, 2020 @ 9:40 PM

  19. Before I started seeing an Epileptologist 20 years ago my Neurologist had me on a drug called Primidone. My new Epileptologist weaned me onto Gabapentin. It wasn’t perfect, but it was better. Over the years I’ve had a Mixture of drugs, combinations, a Temporal lobe resection, and now a VNS. I hope I start to see some improvement, I know it will take a while but it’s better than never.

    Liked by 2 people

    Comment by Donna Jones — December 10, 2020 @ 2:43 PM

    • Boy Donna, you’ve been through a lot. I also hope you’ll see some improvement, sooner rather than later.

      Like

      Comment by Phylis Feiner Johnson — December 10, 2020 @ 3:54 PM

  20. I’ve been on Dilantin 17 years. I take 800 mg of it per day! It causes so many side effects that I have literally tried to quit it cold turkey. I paid for that mistake dearly. Dilantin causes me to shake, my body jerks, my eyes are terrible, my bones ache and hurt, I get dizzy and fall. They’ve tried a few meds on me and dilantin somewhat controls my seizures BUT it causes a ton of unwanted side effects 😢 I would never wish this on anyone. Epilepsy really does suck

    Liked by 2 people

    Comment by Katie Cook — December 10, 2020 @ 5:02 PM

    • Sometimes it’s difficult to figure out which sucks most…Dilantin or Epilepsy.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 10, 2020 @ 5:57 PM

    • OH MY GOODNESS KATIE!!!!!!! I thought 400mgs/daily was bad?? WOW!! Your a STRONG LADY!!!!!!!

      Liked by 1 person

      Comment by Kathy S.B — December 13, 2020 @ 9:42 PM

  21. I’ve been on many drugs and combinations over the years and none have worked but the one with the absolute worst side-effects: generic Depakote (valproic acid). But really, on that med I was such a zombie that if there had been a nuclear bomb explosion, I would have thought it was pretty 4th of July fireworks. Now who the hell wants to live like that?

    Liked by 2 people

    Comment by skolly9 — December 10, 2020 @ 5:10 PM

    • Maybe I was given that at some point, because I remember sitting at the kitchen table for hours on end, doing nothing, smiling and smiling.

      I missed more work from medications, by far, than from any aspect of epilepsy.

      Liked by 2 people

      Comment by HoDo — December 10, 2020 @ 5:30 PM

    • I was a walking, talking zombie, too. UFOs could have landed on my shoulder and I would have cheerfully said: “Hello.”

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 10, 2020 @ 5:59 PM

      • Yes Phyliss, like you I’ve had epilepsy since infancy. And was one both Phenobarbital and Dilantin. Having been hospitalized this past year in June ( aspiration pneumonia ) Dilantin was the only thing that calmed me down from doing multiple seizures. And they had sent me home with a script for 3 100mg pills. I was already taking 300 mg of Carbamazepine XR and OMG , the side effects were horrendous !!!!! I was miserable and like you said if you would have told me the sky was purple with pink polka dots , I would have believed you. Now I’m only on my Carbamazepine and only 100 mg of Dilantin at night seems to have been working good. Now I’ am having an issue with high blood pressure And have been put on medication for it. Which ones are safe or does Carbamazepine bring on High BP ??? I’m 64 this year and curious as I’ve been having issues with dizziness. Not nice. BTW I was diagnosed with Gran Mal seizures also, back in the day LOL.

        Liked by 1 person

        Comment by naddieweb — February 2, 2021 @ 3:58 PM

      • Hypertension is a rare side effect of Carbamazepine, so it’s probably not that.

        I’m not a doc, but here’s a link for High Blood Pressure (Hypertension) Medications: https://www.rxlist.com/high_blood_pressure_hypertension_medications/drug-class.htm

        My only input it that ace inhibitors almost killed me and now I’m on a beta blocker. But I take different meds than you. And everybody’s unique.

        I would strongly suggest that you document your dizziness and then report it to your doc. This is NOT acceptable and it’s the last thing you need on top of epilepsy.

        Like

        Comment by Phylis Feiner Johnson — February 2, 2021 @ 5:09 PM

  22. I’ve been on dilantin since 1978. It worked well up through 2004 when my seizures became intractable and I had a lobectomy in 2006. Still on dilantin, major side effects have been bone density and my gums over-reacting and growing over my teeth. Bone density is in check with vitamins and running, teeth kept in check with floss and a stiff toothbrush. Was also on 8 other medications over the years as backups, several severely changed my personality, others worked for a short period.

    Liked by 2 people

    Comment by Jon Sadler — December 11, 2020 @ 11:48 AM

    • HOLY COW JON!!!!! How did you do that?? I’ve been on Dilantin as well since 1978!!!!!

      Liked by 1 person

      Comment by Kathy S.B — December 13, 2020 @ 9:44 PM

  23. How many meds are you on now. Eight seems like an awful lot. Are the present meds working for you, or was it the surgery?

    Like

    Comment by Phylis Feiner Johnson — December 11, 2020 @ 12:21 PM

  24. I collapsed in 1974 so started taking Dilantin too. When I came to Oregon in 1986 I changed to Keppra but got too dizzy so then tried Phenobarbitol then a few more including neurontin (I fell down an escalator – I was so dizzy), then In the 1990’s they finally discovered it was intractable because it was in both temporal lobes. In 1998 a VNS was put in my chest, so I longer have drop attacks and might have a seizure every 2 months. And the cloBAZam helps a lot along with the 200 mg of Vimpat I take both twice a day with breakfast and dinner. I thought I was alone (I can’t remember growing up) but now I know many more people have the empathy to understand this disorder. Though I still turn the bottle upside down so I know I’ve taken it.

    Liked by 2 people

    Comment by Leon Chavarria — December 13, 2020 @ 1:56 PM

    • Yup. You’re in good company. Definitely not alone.

      I had my first seizure at 10 and never met anyone who had epilepsy until I was 29! Of course, that was in the ancient days before websites, blogs and forums.

      As for your pills, have you considered a pill pack to keep them straight? Or is it the embarrassment of what you’re taking?

      If you need some help to jog your memory, one of these might work for you:

      Medication Reminders You Won’t Forget https://epilepsytalk.com/2014/04/06/medication-reminders-you-wont-forget/

      Thanks for “coming out of the closet” and sharing your story.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 13, 2020 @ 2:12 PM

      • I agree!! Thank you very much Leon please take care of yourself!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — December 13, 2020 @ 9:47 PM

  25. Reblogged this on Disablities & all sorts of Mental Health Issues.

    Like

    Comment by Kenneth Ratcliffe — December 13, 2020 @ 6:52 PM

  26. A funny story about Dilantin and don’t worry. I’m making fun of myself: I was at a hotel getting ready for a bowling tournament. I needed to take three 30 mg Dilantin but by mistake, I took three 100 mg’s. I went straight into double-vision. Since I knew I was bowling in another hour or two, I went back to my room to try to sleep it off. Then I get a call asking where I am and telling me to go to the bowling alley.

    When I get there, I’m still seeing two of everything. I start to throw practice balls and come up with an idea. If I aim at the gutter to the left of the two I see, I’m right where I want to be. So I do that and my first two games were both 242. By the third game, I have my vision back and I bowl a 165.

    That was when everyone there told me to get drugged before every tournament I bowl in. 😵

    Liked by 1 person

    Comment by Ed Lugge — December 15, 2020 @ 9:56 AM

  27. Apparently Dilantin improves your score. Then there’s the question of ability! 🙂

    Like

    Comment by Phylis Feiner Johnson — December 15, 2020 @ 11:29 AM

  28. I have been on phenobarbital since I was 18mths old in 1969. I have also been on dilantin since I was about 7 in 1975. It has been a roller coaster with the amount of seizures I have but I have been getting better in that aspect for the last thirty years and now I am going on 6yrs of no seizures. The only time I had any bad side affects were when my step mom would send me to the hospital when I had a seizure and the doctor would pump me full of it with an IV and raise the dosage. I take 200mg of dilantin and 97.2mg phenobarbital and 500mg diamox/acetozolamide for seizures daily.

    Liked by 1 person

    Comment by Jeanine Bunt — December 15, 2020 @ 3:24 PM

  29. Thrilled to hear you’re 6 years seizure-free!

    Stupid step-mother. Mine ignored my seizures.

    Pumping you up with a giant IV dose could just lead you to toxicity. Not too great an idea. 😦

    Like

    Comment by Phylis Feiner Johnson — December 15, 2020 @ 3:34 PM

  30. I have had Epilepsy since infancy and am 63 and had the pleasure of being on Dilantin and Phenobarbital as a child. Yes it was a NASTY Combo and explains a lot of how come I was so drowsy and aggressive as a child. Be very careful to the Mom’s and Dad’s out there choosing a med for their Child.

    Liked by 1 person

    Comment by naddieweb — December 18, 2020 @ 4:01 PM

    • Well, we’re almost the same age (I’m 67) and in the dinosaur days I’m afraid those were the only options. Along with the obnoxious side-effects that went with them. (Gee, I’ve never used the word “obnoxious” to describe them. Just goes to show you how strongly I feel.)

      Moms and dads these days have many more options, for better or worse. And we can only hope they are steered to something more effective and user-friendly, although there’s no such thing as a miracle.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 18, 2020 @ 4:38 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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