Epilepsy Talk

Dilantin – Hero or Horror? | May 1, 2022

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 which can happen with Dilantin. (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. You missed one side effect…shrinking wallet syndrome. As a brand name drug, I’m unable to find an insurance drug plan that will cover Dilantin. A 90-day supply on Good Rx costs $470.

    Anyone reading this have experience switching to a generic?

    Liked by 1 person

    Comment by Tom — May 1, 2022 @ 10:55 AM

  2. I didn’t like it, it made my seizures worse.

    Liked by 1 person

    Comment by Zolt — May 1, 2022 @ 11:48 AM

    • Me too. I was a walking zombie.

      I finally went into a coma from too much of the med in my system.

      (They didn’t do drug tests for blood levels in the dinosaur days!)


      Comment by Phylis Feiner Johnson — May 1, 2022 @ 11:53 AM

  3. Prescribed to take Dilantin ever since I came up with seizures 25 years ago, sometimes I wonder if these medications were made to cure for the medical hardships people get to encounter or to inflict massive risks to more medical hardships the patient had never encountered before?
    Basically, does taking these medications outweigh the benefits to cure the medical hardships they were prescribed for or expose the patient to the inherent risks of massive side effects the patient had never imagined before?
    While I understand a lot of research & financial investment had been dedicated to find out the benefits & risks of the medications, I wonder why the medication are prescribed to the patients with the massive risk for damages to the wellbeing of the patient than to the benefit of curing the patient’s medical difficulties?
    While the advancement of science & technology had made a lot progress in eradicating many pandemics in the last century, how did modern society failed to come up with magic drugs that could cure epilepsy with less risks to avoid massive side effects?
    While Dryfus may have put in his best efforts to cure the neurological or phycological hardships of the patients by researching & funding the production of Dilantin, the FDA should have done a whole lot better job in finding out the deep benefits & risks inherently associated with the side effects of Dilantin, therefore should had clarified the confusion & consequences behind the benefits & risks of prescribing the medication before certifying Dilantin for medical consumption.

    Liked by 1 person

    Comment by Gerrie — May 1, 2022 @ 12:17 PM

    • I agree 100%. Unfortunately, back then there was only Dilantin and Phenobarbital.


      Today, it’s sort of the opposite. We have so many meds that it’s hard to figure which one(s) might be best for you. With the most benefits and the least consequences.


      Comment by Phylis Feiner Johnson — May 1, 2022 @ 2:32 PM

      • I agree after I had a seizure in 1974 there were only two medications so I started Dilantin then. Well I have no (‘cept a few images) memory of the first 26 years including after I was 18 years old. I think a virus and high fever in the mid 1050’s started this problem.

        Liked by 1 person

        Comment by leonchavarria — May 22, 2022 @ 5:28 PM

  4. I lost a tooth to Dilation, my front tooth became loose after the drug caused my gums to swell in the front.

    Liked by 1 person

    Comment by Donna Jones — May 1, 2022 @ 1:08 PM

  5. I remember in the 1970’s the cost of dilantin was under $7.00, but by 1978 it doubles to almost $14.00 for the same 300MGS a day that I took of the 50MG tablets, that smelled like spearmint. Then I learn of the capsule which was 100MGS and I took 3 of them. That costs then was under $5.00 for 300mgs a day. I did not know much then what the differences were with GENERIC or BRAND NAMES, as my brain was TRYING to develop as normal as any other persons brain who never had seizures to deal with. DILANTIN of any type you can take is a BRAIN CHEMISTRY KILLER & DESTROYER of ever having a normal brain chemistry. But to keep seizures in your life, THAT IS A NEUROLOGISTS DREAM COME TRUE, which that is why any new seizure diagnosis that get determined to be epilepsy, DILANTIN will always be 1 of a few drugs that the child will have to take OR ADULTS as well. KEPPRA & TEGRETOL will be as bad or worse to try for anyone for the 1 time, even if they are a XR or TR time released drugs. You ALWAYS look for MAGNESIUM STEARATE & ALMUMINUM of any kind in your drugs along with MERCURY which can be found in all generic names & some BRAND name drugs of the AED’s on the market. It’s more reason to take a good magnesium supplement WITHOUT magnesium stearate in it, plus to take a good ZINC & D3 & OMEGA 3 supplement daily. Calcium can be a risk to your heart plus it can have stearate in it, that will increase chances of seizures to happen. Most if not all of these things SHOULD BE TAKEN if you are taking ”dilantin” as it will not alone will make your seizures decrease or stop, BUT alone dilantin types will increase all seizure activity if nothing else gets taken to increase your protective brain chemistry you should be developing & is being attacked by dilantin.

    Liked by 1 person

    Comment by James D — May 1, 2022 @ 2:58 PM

  6. This new drug XCOPRI almost seems to make me feel like it works as DILANTIN as far as some of the side effects BUT the EXCOPRI seems to work & stop ALL to down to 95% of all seizure activity & so far NO focal that turns to GRAND MAL seizures that has happened in 2022. Last year this time I had 2, working toward #3 on MAY 5th of 2021. I had 5 for that 2021 year with just taking VIMPAT, now since the week of THANKSGIVING DAY 2021 when XCOPRI was started, & now taking 150MGS a day at my bedtime hour or 1 hour before, it’s like I have NO WORRY OR CONCERNS of any seizure activity will happen. NEVER in over 61 years have I had this much faith in 1 drug & THAT beats any thoughts or worries of getting a RNS device to record all brain activity & drug levels, as if a drug or a combo of drugs is going to work, then THEY WILL WORK to end seizure activity & all of this IS WITH AT TIMES eating the toxic foods saturated with MSG, NITRATES & NITRITES in some foods that I like, that I had in the past have eaten & later a GRAND MAL will happen from the MSG’s, NITRATES & NITRITES when now I will take MORE vitamin C at least 2000 units of it, when I eat those foods today IF I will eat them. EVERYONE with seizures MUST WATCH WHAT HAPPENS LATER when MSG, ASPARTAME, NITRATES & NITRITES are ingested in you digested system & later you will KNOW like in 30 minutes or 2,4 6 8 10, or 12 to 24 hours later if a seizure is going to or has happened. ANY type of seizures can happen by a bad diet of EXCITOTOXINS in all you drink or eat daily. It just takes some time a LONG OR SHORT TIME SPAN for the brain chemistry to get effected from it all.

    Liked by 1 person

    Comment by James D — May 1, 2022 @ 9:35 PM

  7. I can’t take Dilatin or Keppra or Supha AEDs only for the fact I have allergic reactions!!

    I can’t remember the AED name at the time but it’s a dangerous one that causes permanent blindness if prolonged useage. I was yanked off it by a Neurologist after he was warned by the FDA and CDC!
    If my eyesight is crap it’s by the idiots that trigger my Epileptic seizures that I have too frequently again. Now I’ve hurt my neck as well as … From Friday’s Epileptic Seizure!

    Liked by 1 person

    Comment by Taima — May 2, 2022 @ 12:11 AM

    • Got out of the hospital yesterday from 2 Epileptic Seizures although the second one was told to me that I “fainted” in front of staff members of the hospital. When I confronted a nurse with that statement said to my face I was later told that I had a “Syncope episode”!
      I was supposed to be released that day too!
      I asked a few people if they knew about Epilepsy, as I was waiting for tests, et cetera they said “No!”
      I confronted another nurse about what I just asked. Her response was “Everyone employed in the hospital knows about Epilepsy!”

      What a lie! I even pissed off a nurse who did rounds in a morning a) for refusing to take 14 AEDs pills for the morning!
      I had an Emergency dose AEDs that I have had carried with me where I used to live “just in case of” for years. Then stolen a lot in the city where I am now since 2018…. I took the emergency dose because there was no immediate sign of the nurse. It was the time that I took them she still wasn’t around… An hour later she showed up and wrote me up as I had been taking my AEDS … Every time I had to take my AEDs I was asked “if I was taking my own AEDs”.
      The entire experience was a nightmare! And returning where they guessed that I wasn’t safe because of certain people jumping empty rooms and doing Cybercrimes and bullying getting away with it just as they did before when I lived in a different city and and had life because there was no such thing as Covid-19, or Omnicron.

      Whether you tut and don’t believe in Cybercrimes it happens. The government I’m under doesn’t care!

      Liked by 1 person

      Comment by Tabitha — May 7, 2022 @ 3:40 PM

  8. it was a horror for me. I was always feeling drowsy, dizzy, weak, gums were swollen a bit, and My seizures became worse…. I know most of you all may disagree, but kepra and lamictal are actually more effective when it comes to controlling my seizures. I mostly get 1 seizure per month, instead of 3. Of course there are times when I rarely get 2 per month, but that’s due to stress and loss of appetite.

    Liked by 1 person

    Comment by kate — May 6, 2022 @ 8:50 PM

    • Lamictal has been very good to me. At first, I was hyper/crazy. But when I settled down and changed my bedtime dose to 6PM, all was well.

      99% seizure-free for 15+ years!


      Comment by Phylis Feiner Johnson — May 6, 2022 @ 10:51 PM

      • That’s awesome phylis! Wish there would be only one pill that everyone can take and reduce our seizures. We wont have to choose between the “blue pill or the red pill” anymore 😉

        Liked by 1 person

        Comment by kate — May 7, 2022 @ 7:52 AM

  9. If only wishing made it so! 😉


    Comment by Phylis Feiner Johnson — May 7, 2022 @ 8:46 AM

  10. I just recently got put on Dilantin/Phenytoin this past month after my Zonisamide levels came back near toxic! I had to get a doctor in the ER to prescribe it for me so my dad and I could pick it up. It wasn’t sent to me yet! I didn’t even see it AFTER I got back from my parents’ house after more than a week!

    Liked by 1 person

    Comment by Alainna Robles — May 8, 2022 @ 9:05 PM

    • Call the ER and see who was on duty, then have the script emailed or faxed to your pharmacy. Otherwise, explain to your primary care doctor what the situation is. Or better yet, get ahold of your neurologist and if you don’t have a neurologist, get one pronto!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 8, 2022 @ 9:48 PM

      • I got the Dilantin filled in the ER and went to a different pharmacy to fill it. I usually use mail-order from the one associated with my doctors, plus it was subscribed by a different doctor while my original Epileptologist was away. I am seriously considering a new Epileptologist and Neurologist though, as I don’t want to run into the Epileptologist I see now and she doesn’t like hearing my side effects or concerns about taking certain medications. I had to get my primary involved to get her to listen about the Zonisamide being horrible for me.

        Liked by 1 person

        Comment by Alainna Robles — May 10, 2022 @ 5:15 PM

    • After waiting for a week to get your prescriptions, walk in to the ER pharmacy & explain your condition to the front desk clerck & ask the pharmacy supervisor to contact the Doctor who prescribed your prescription & expedite the delivery of your medications.
      You should pick up your prescriptions from the visit to the ER pharmacy, instead of waiting for another week for your prescriptions to be delivered in the mail.

      Liked by 1 person

      Comment by Gerrie — May 9, 2022 @ 1:08 PM

  11. Alainna Robles, perhaps this link will help.

    Below is a compilation by website forum members who have had positive personal experiences with docs over the years.

    This list is based on recommendations and, of course, is purely subjective. But it might be helpful for anyone looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor.

    NOTE: The National Association of Epilepsy Centers (NAEC) provides a directory of specialized epilepsy centers in the U.S. along with other useful information about epilepsy. https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/

    2022 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors https://epilepsytalk.com/2022/01/08/2022-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/


    Comment by Phylis Feiner Johnson — May 10, 2022 @ 6:24 PM

    • Sadly, I currently see Dr. Sosa (Dr. Shah is the neurologist I use for my headaches etc.)and I went to Froedtert (was nearly killed by Dr. Carlson) prior to switching to Aurora. I am trying to get to Iskandar for my Chiari Malformation, Empty Sella, and Pseudotumor Cerebri (recently diagnosed), but need to find a way to get there! I live in Union Grove. I tried a Neurophysiologist at Aurora Kenosha prior to going to Aurora St. Luke’s.

      Liked by 1 person

      Comment by Alainna Robles — May 10, 2022 @ 10:01 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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