[Research] Dilantin – Hero or Horror?

[PhylisFeinerJohnson]

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 anti-epileptic drugs.

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 anti-epileptic drug 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 anti-epileptic drugs. 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!)

[little fruitcake]

I've been on Dilantin several years now, a couple of weeks ago I started having pain in my right foot. It has become severe with swelling and discoloration. I went to the ER when unable to put any pressure on it. (I am in cosmetology school and stand all day on concrete floors) I dont remember any injury to the foot. The doctor said it was a bad sprain and said to stay off of it. I am not able to do this and finish school. Should I contact my neurologist doctor about this? It doesnt seem to be any better. Thank you.

[PhylisFeinerJohnson]

I'd be surprised if Dilantin had anything to do with it. Did your doc give you anything for your ankle, like an elastic sock? (It's like an ace bandage sock with the heel cut out.) I'd give it some more time...if you can.

Hope you're feeling better soon!

[BuckeyeFan]

I count myself lucky.

I have been on dilatin for 29+ years. Ever since my E started. My biggest issue with it is confusion/focus/concentration problems when my blood levels are high, though overall I am pretty good with the side effects.

My sub-par coordination and slight slurring of speech were there before the dilantin, so I have no idea if that is an effect. Recalling names is tougher for me all the time, however that may be from aging or another source. I sometimes have problems even coming up with family names.

7 years ago, my neurologist switched me to the brand name phenytek. It is a time released version of phenytoin, though less known. It seems to have wiped out some of my peaks and valleys.

I personally would support trying it for those with E, especially if other drugs are not working.

Note: my niece who has a PHD in neurophsychology told me that dilatin would never pass the rigorous FDA standards of today. It would never be approved if a new drug due to the side effects.

[little fruitcake]

Thank you so much. I am trying to stick it out. Sometimes it feels bettera and then bad again. I am putting it up as often as I can. Thanks again.

[Endless]

Hey, Buckeyefan,

Did your neice say why it wouldn't pass by the FDA today? Are there any others she thinks wouldn't have passed, either?

[PhylisFeinerJohnson]

Well, the FDA has checked into Dilantin a few times, but they still haven't reached any conclusions.

[BuckeyeFan]

Hey, Buckeyefan,

Did your neice say why it wouldn't pass by the FDA today? Are there any others she thinks wouldn't have passed, either?

The one we discussed the most was the side effect issue. It is an effective drug, but has a high incidence of the side effects. Many times when you read warning labels on meds, the side effects listed may only hit 1% of patients. Dilantin rates are usually higher (no facts available right now).

I think most anti-epileptic drugs have more side effects simply because you are dealing with the brain and that is so sensitive.

[PhylisFeinerJohnson]

Another interesting factoid from our doctor friends: TYLONAL wouldn't make it past the FDA if it was tested today. (All those poor people in the hospital, not to mention the new moms!)

[Endless]

Tylanol, as in acetaminophin?

If you are talking about acetaminophin, I know if you take too much of it the result could be liver damage. What does it do to pregnant women? And sick people in hospitals? Should I quit taking the stuff?

[PhylisFeinerJohnson]

You're right on all accounts. It DOES cause liver damage. Stick to ibuprophen! It's not the pregnant women who get prescribed acetaminophen, (it's prescribed for after birth pain), there just seems to be some kind of hospital protocal, that when someone is in (what they consider) minor pain, Tylenol is the answer. (???)

[Endless]

Wow... and Ibuprofin can cause liver damage. So what's a person to do? I guess grit one's teeth and live with the pain. I wonder what percentage of the population is harmed by either of these drugs when they are taken as directed on the bottle?

[Nakamova]

Ibuprofen is also hard on the stomach...