Epilepsy Talk

Dilantin — What People Are Saying… | November 13, 2018

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.


23 Comments »

  1. Wow! That really covers the spectrum. If the comment about the drug company saying dilantin should only be for short term use is accurate then that certainly says a lot since we know drug companies don’t often like to change their tune on their products. Personally I agree. Sadly it’s a great AED but at what cost?

    Liked by 1 person

    Comment by Katie — November 14, 2018 @ 12:16 AM

    • At what cost indeed, Katie.

      But BIG Pharma continues to make the BIG bucks, leaving us to sort the rest of it out for ourselves.

      Or with another drug.

      Like

      Comment by Phylis Feiner Johnson — November 14, 2018 @ 10:09 AM

  2. My comment has nothing to do with Dilantin and I’ve said it before but would like to say it again to a fresh audience. I take a couple short of ‘catnaps’ a day AM and PM which produces delta waves and it’s made a big difference. Anyone else done the same?

    Liked by 1 person

    Comment by Peter — November 14, 2018 @ 5:56 AM

  3. I have been on Dilantin for 40 years (initially it was one of three options). With seizure breakthroughs I was placed on a secondary medication to maintain control. Dilantin has worked for me because my doctor had my blood level checked two to four times a year and I had his emergency number to call if I didn’t feel well. Some of the secondary medications caused severe changes to my personality. Anger being the most significant and in some cases I was immediately taken off the secondary. We need to remember the medications prescribed effect our brain. One of the most difficult parts of seizures is finding the right medication (or combination thereof) that controls the seizures with no impact to our cognitive skills and personality or significant side effects to other parts of the body (i.e. Lamictal worked great on controlling the seizures, the other parts of my body started to react). Whenever someone is having reactions to a medication they should contact their doctor immediately. There are many medications available and we have to be ready to try several before finding the one that works best; in seizure control with minimal to no impact to our cognitive skills, memory, and body.

    Liked by 2 people

    Comment by Jon Sadler — November 14, 2018 @ 12:02 PM

    • I kissed many frogs (including Dilantin) before I found my “magical medicine mix”.

      For me it was Lamictal with a back-up of Klonpin, but it was a long, hard road getting there.

      The good news is that there are so many drugs out there now.

      The bad news is finding the right combination or mono therapy.

      I agree with you whole heartedly.

      Like

      Comment by Phylis Feiner Johnson — November 14, 2018 @ 12:10 PM

  4. What are the pros and cons of phenobarbital I couldn’t function on Dilantin . It was awful.

    Like

    Comment by Vivian — November 14, 2018 @ 12:23 PM

  5. And guess what was working perfectly before Dilantin was introduced? The Ketogenic Diet. We now have more epileptics medically intractable and requiring surgeries when the answer has been there all along.

    Liked by 1 person

    Comment by Jennifer Newsom — November 14, 2018 @ 11:19 PM

  6. Thanks for this site – its much appreciated.

    ________________________________

    Liked by 1 person

    Comment by nick clements — November 15, 2018 @ 8:17 AM

  7. When first given med’s for seizures, it was back in the 70’s. Dilantin was the main med taken. I started to get called”spacy” and along with learning more about epilepsy, I also researched what I was given for it. At the age of 14, I was having Grand mals, but being stocky, I was afraid it would interfere with my body’s growth, so I only took Dilantin when I had strong auras. Then it was too late. It wasn’t until years later that I decided to go back on then faithfully, but I always was leary if the long term affects. Now, over 40 years later, I’m off all meds but one, and that’s only because of the surgery two years ago. It took many Drs and many newer med’s to get me off the Dilantin though. It was a long running nightmare!

    Liked by 1 person

    Comment by John Woodrum — November 15, 2018 @ 3:52 PM

    • Me, too.

      I went on Dilantin in the 60s. I was a walking zombie.

      Didn’t do much for my schoolwork either.

      I was dumber than a dummy.

      No brain, no pain? 😦

      But I’m thrilled your nightmare is over.

      Score one for surgery!

      And your persistence.

      Like

      Comment by Phylis Feiner Johnson — November 15, 2018 @ 4:21 PM

      • Hey Phylis, interesting what you said about schoolwork. I was 14 when I was diagnosed/went on dilantin. My grades plummeted, especially in math. Luckily (?) I was pretty bright to start with so didn’t fail, but only just scraped though high school. Still a miracle I managed collage but I got the piece of paper in a lovely frame on the wall 🙂

        Liked by 1 person

        Comment by Katie — November 15, 2018 @ 4:29 PM

      • Good for you!

        I almost flunked math, but my teacher said he’d pass me if I promised to never take one of his classes again. 🙂 Too many questions and not enough answers for my muddled brain.

        French I passed, only because I won a National Essay Award. And the teacher couldn’t exactly flunk me after that. It would be too embarrassing.

        To top it all off, I went to 12 schools in 12 years. (Death…divorce…and depression.)

        I still dream I’m 65 and stuck in Forest Hills High School. (My fourth high school in two years.)

        But I DID make it to college and graduated Magna Cum Laude.

        A minor miracle!

        Like

        Comment by Phylis Feiner Johnson — November 15, 2018 @ 4:38 PM

      • Congratulations !!

        Liked by 1 person

        Comment by Vivian — November 15, 2018 @ 6:12 PM

  8. I’ve been on Dilantin (slow-release phenytoin) for 28 years. Since I had brain surgery about 15 years ago where they removed scar tissue and not too much of my brain (although I wouldn’t have minded losing a memory or two : ) I’ve pretty well seizure free. But I’m still on Dilantin 300mg/day. If I go off the Dilantin or miss a day or two I get seizures. They are epileptic seizures but not the same as the pre-surgery type. The original cause has been removed. They are more or less provoked by the need for Dilantin–a little like coming off narcotics. About half of epileptics taking Dilantin who are successfully treated through surgery can go off the Dilantin. I’m in the other half; I have to stay on the drug. I don’t seem to have any negative side effects though so I can’t complain. But every situation is different.

    Liked by 1 person

    Comment by philamisan — November 15, 2018 @ 6:11 PM

  9. That’s really interesting.

    You had surgery yet you’re still on Dilantin — with no side-effects.

    It’s almost like a contradiction.

    But if it ain’t broke… 🙂

    Like

    Comment by Phylis Feiner Johnson — November 15, 2018 @ 8:02 PM

  10. Phylis, Thanks for another informative article, again.
    Twenty years ago, I came up with Neurological disorder, having grand mal seizures I never had before.
    Twenty years later, I’m wondering if the medications I’m still taking to control my seizures are going to be the cause for psychological disorder, hallucinating petite mal seizures, paranoia, phsycronophria & panic attacks I never had before.
    While the transformation of the neurological disorder into psychological disorder may be hard to imagine, just like you pointed out, the struggle to control my epileptic seizures had been “pick your poison”, starting with Dilantin to Lamictal to Keppra & back to Dilantin again.
    In the end, one wonders if the seizures left untreated with fatal prescription drugs are better off, than the side effects of the prescription drugs made to believe that the drugs will control the seizures, without costly price to your brain functions.
    So far, I’m grateful to know that I still got some brain functions left, to fight another day.
    The struggle to conquer Epilepsy must go on!
    Happy Holidays to all.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — November 15, 2018 @ 10:40 PM

    • Gerry, I think you hit the nail on the head. (As usual.)

      Everything comes with a compromise.

      It’s just a matter of how much you want/need to give up.

      AEDs have their many faults. Like diminished cognitive capacity and elevated emotional disorders.

      But without them, what would we do?

      Like

      Comment by Phylis Feiner Johnson — November 16, 2018 @ 6:35 AM

      • Obviously Phylis, there isn’t much of options available, beyond taking the AEDs & try to minimize or stop the seizures & manage the side effects of the AEDs or get off the AEDs & risk to have more seizures.
        In both cases, it’s risky exodus in search of healthy lifestyle, many of us cherish to treasure, everyday.
        Gerrie

        Liked by 1 person

        Comment by BahreNegash Eritrea — November 16, 2018 @ 3:38 PM

      • “CHERISH is the word…”

        That used to be the beginning of a song.

        But yes, each day brings a new promise. After all, for better or for worse, we’re still here.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — November 16, 2018 @ 4:39 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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