Epilepsy Talk

Dilantin — Hero or Horror? | November 12, 2018

Dilantin (Phenytoin) can be considered the grandfather of all epilepsy medications.

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

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

Today, Dilantin remains one of the most widely used drugs in the world.

Although in most cases, it is now a second-line therapy, it’s still the drug of choice in the emergency treatment of seizures and status epilepticus.

But for the most part, Dilantin has been used for treating generalized and partial tonic clonic seizures and complex partial (psychomotor, temporal lobe) seizures.

It’s also used for prevention and treatment of seizures occurring during or following neurosurgery.

It may be used alone as mono therapy or with phenobarbital and  other AEDs.

Since it first came out, Dilantin has always had its fans and its detractors.

Who can forget Jack Nicholson’s out-of-control behavior as the “crazy?” in Ken Kesey’s “One Flew Over the Cuckoo’s Nest”!

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

Dilantin as an anti-depressant…

The famous Jack Dreyfus, founder and former head of the Dreyfus Fund, left Wall Street in the 1960s and started the Dreyfus Health Foundation to research and promote the drug, which he credited with having turned around his depression.

Dreyfus believed that Dilantin was a wonder drug that could promote positive mental health by controlling anger and depression.

And he contributed more than $70 million in personal financing to see Dilantin approved for those alternate uses.

Dreyfus also claimed to have supplied the drug to the late President Richard Nixon to rectify Nixon’s poor moods both during and after his presidency.

Nixon’s former aides denied the story, but Dreyfus stuck to it and even expanded on it during an interview in 2000.

”When he was 70 he was here and he asked for more, and I gave it to him,” Dreyfus told the New York Times.

Dreyfus detailed his passions and his views of the drug in his book “A Remarkable Medicine Has Been Overlooked.”

But despite financing four decades of research into the anti-depressant benefits of Dilantin, Dreyfus failed to sway the FDA.

He died in March 2009.

Ironically, just a year before Dreyfus’ death, Dilantin was put on the FDA’s Potential Signals of Serious Risks List to be further evaluated for approval.

The list means that the FDA has identified a potential safety issue, (one was quality control), but it does not mean the FDA has identified a causal relationship between the drug and the listed risks.

Possible risks…

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

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

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

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

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

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

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

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

Side effects…

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

That says something in itself!

If you have diabetes, this drug may increase your blood sugar levels.

Check your blood (or urine) glucose level frequently, as directed by your doctor.

Promptly report any abnormal results as directed. Your medicine, exercise plan, or diet may need to be adjusted.

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

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

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

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

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

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

And if you’re real thirsty or constipated, don’t be surprised.  Unfortunately, that seems to be the price of all AEDs.

Try Xylitol, a natural sugar substitute that helps with the dry mouth that many of us suffer.

And Salba, a natural fiber that’s a rich source of Omega-3 fatty acids and is also a natural laxative.  (Believe me, it works!)

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  1. Thank you!
    My son has been on Dilantin for 1 year. He was on Trileptal for 10 years and it quit working.
    He has been seizure free since Dilantin.
    I keep praying we can reduce the amount
    He is taking and am hopeful for a time when
    He is seizure free and off any meds.
    Has anyone been able to wean off Dilantin
    To a lower dose and still have control?

    Liked by 1 person

    Comment by Tami — November 12, 2018 @ 10:26 AM

  2. Wow … I read the article and think I’m glad I’m still here, been on Dilantin since 1963. I’m still up and going however I would not go sky diving. When I land I all of my bones would shatter.
    But I love life !

    Liked by 1 person

    Comment by Bonnie — November 12, 2018 @ 2:58 PM

    • LOL! I don’t think anybody with epilepsy should go sky diving, no less someone with the bone fragility that Dilantin eventually brings with it.

      But hooray to life and the joys to be found!


      Comment by Phylis Feiner Johnson — November 12, 2018 @ 3:44 PM

  3. One of the most widely used medications in the world today…because it’s one of the cheapest AEDs along with phenobarb so all that is accessible for many people in many countries. We’re really quite spoiled for choice now aren’t we?

    I did my time on it in the 80s, not many other options around then. Hate to say it but it’s actually a really good AED if you take away the side effects and long term effects 😦 It made me hairy, got the gingivitis but most seriously kept going spontaneously toxic so it wasn’t worth the grief in the end. I’m not sure if it’s responsible for my subsequent lack of Vit D or if that’s just long term AED use. I think it also may have triggered serious depression and behavioural problems- I was a teenager when I started it and apparently those drugs can really mess us teens. Like many others, switched to Lamictal when that came out.

    Liked by 1 person

    Comment by Katie — November 12, 2018 @ 3:20 PM

    • Well, the options weren’t any better in the 60s. So you didn’t miss much. 🙂

      Instead of getting hairy, I lost my long hair (and now wear it short).

      Yes, I too got galloping gum rot and went toxic. Two days in never-never land.

      And we’re both on the same page!

      I started Lamictal when it came out and I’m one happy camper!


      Comment by Phylis Feiner Johnson — November 12, 2018 @ 6:14 PM

  4. For me it was a bad drug, dilantin brought back visual auras for me, which i didn’t have since before they found my tumor. And it didn’t seem to help my seizures any. Had gum pain and was not a very happy camper on it. I convinced my doc to take me off of it and he put me on Lamictal, oh my, that was just as bad if not worse. Visual auras had stopped and all the previous side effects of dilantin, but Lamictal made my seizures 5x more worse then i had know them to be. Literally the seizures would beat me up. It was six month into taking this med before the violent seizures started. After the second episode, i told my doc i needed off of it. Then the doc put me on Gabapentin, couldn’t be happier since. I just hope it doesn’t lose it’s straight.

    Liked by 1 person

    Comment by Zolt — November 12, 2018 @ 10:33 PM

    • I guess you won’t be the poster boy for Lamictal, Zolt (like Katie and me)!

      Seriously, I’m sorry you had such a terrible time of it. As if the tumor wasn’t enough.

      But, let’s hear it for Gabapentin. And someone who couldn’t deserve relief more than you — who has been through so very much.

      Again you have my admiration. (Not the first time.)


      Comment by Phylis Feiner Johnson — November 12, 2018 @ 10:44 PM

  5. I am Truly Thankful to be off of Dilantin. That medicine did no good in controlling my seizures. All it did was make me overwhelmly tired, and I have a hard time remembering things from the years that I took it. Can’t even remember what year it was that I was taken off of Dilantin. But thankfully the neurologists at the Epilepsy center, that I was going to back then, took some blood tests and discovered that I was about to have a toxic reaction to Dilantin, and got me off of it as fast as they could. That put Dilantin as #1, on my list of medicines never to try again. Even the Epilepsy Specialist, who I see now, when ever Dilantin comes into the discussion some how, instead of saying the name, she calls it “The medicine which shall not be named”.

    Liked by 1 person

    Comment by David Jensen — November 13, 2018 @ 1:32 PM

    • I’d love to NOT have been on “the medicine which shall not be named”.

      Unfortunately, I DID get toxic and it was two days in never-never land for me. 😦


      Comment by Phylis Feiner Johnson — November 13, 2018 @ 2:18 PM

  6. My husband has tried Gabapentin, Tegretol & Depakote with horrible side effects from all of them, essentially turning him into a zombie where I had to even feed him. We are now trying acupuncture & an Osteopath for some relief from his petit mal seizures. Are there NO good medications?

    Liked by 1 person

    Comment by Elizabeth Masten — November 14, 2018 @ 6:03 PM

  7. Dilantin for me was a nightmare i lost 1 and a half teeth have bleeding gums now there sore. Hurts to eat some foods still. Dentist said nothing can be done just change meds!


    Comment by rusty.hanawalt@yahoo.com — November 21, 2018 @ 3:26 AM

    • I go for deep quarterly dental cleaning which helps abate the galloping gum rot I got from Dilantin.

      Have you changed meds?


      Comment by Phylis Feiner Johnson — November 21, 2018 @ 10:03 AM

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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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