Dilantin's Dark Side

[jonzen]

I've been taking Dilantin for about 40 years. Last night I started Googling the word 'dilantin', and of course, all sorts of information popped up. I read quite a bit of it. As I read the lists of "side effects", my present existence made total sense, though I am not happy with the knowledge.

Memory loss has become significant for me, almost to the point of a disability. Direction and drive has also been a constant challenge for me. Bruising and bleeding easily has been noticed. Tingling and numbness in my toes and fingers has been noticed in the last few years.

I thought these must be the effects of aging, I am 55. But all of these symptoms are listed among the side-effects of Dilantin. There are worse. Possible atrophy of the brain! And my poor liver!

This drug was 'discovered' in the 1930's I think it said. And it is still often the drug of choice by many physicians.

Bernard, you and Stacy have been to see many physicians over the past few years. And Stacy has tried many different drugs and 'treatments'. You must feel that Dilantin is still the best option?

A note here: I have been drawn to enjoying an espresso (small to medium sized soy latte type, half decaf/half regular espresso). Then I read all the information saying that it may be bad for epileptics. I deal with something akin to depression almost all the time these days. I think the little bit of caffeine helped make me 'feel' better for a moment.

What are your thoughts on espresso for seizure-prone individuals?

I certainly wish that I could stop taking Dilantin each day. Though 300 mg is often less than 'therapeutic', it still has it's negative effects on my body.

It's all kind of frustrating sometimes.

Jonzen

[Bernard]

RanMan is another member here who has been taking Dilantin for a long, long time and he has posted about his experiences numerous times. He too is concerned and upset about the long term consequences of taking it.

If she had a choice, Stacy would not be taking any drugs. However, her seizures were out of control and dangerous since delivering our second child, and the Dilatin was the only drug that helped get things back to a livable situation.

Dilantin is not a perfect drug (none of them are) and it seems like it's a bit of suffer now or suffer later when deciding to take it, but overall, I think the quality of life is much better with it.

We are still hopeful that Stacy will be able to achieve seizure control sans drugs again at some point. Like you, she is taking a fairly low dose of the drug and it is technically not in the therapuetic range when her blood syrum is tested.

As far as caffeine goes, some people are more sensitive to it than others. Stacy at one point was so sensitive that she was guaranteed to have a grand mal seizure within 24 hours of eating chocolate or drinking a caffeinated drink. I personally would avoid caffeinated drinks if I had a low seizure threshold.

[Nancy]

Dilantin was the first anti-epileptic drug prescribed to me when I started having seizure (partial complex in 1990 when I was 46 years old). I did not take it very long but it did cause fairly severe osteoporosis. Good grief.

It's too bad we can't have a few meds that we can say "Oh, that's a great drug, it helps me and I love taking it. It removes wrinkles, erases blemishes and cleans my breath :wink: "

[Bernard]

YouTube - Broadcast Yourself.

YouTube - Broadcast Yourself.

[Birdbomb]

AH! hahahaha!

Good one Bernard!

[RanMan]

Jonzen;

Trigger finger and Carpel tunnel syndrome can also be associated with long term use of Dilantin,

I saw my neurologist recently for my 6 month check up and he noticed my operation scar on the palm of my hand, I told him that it was from an operation I had for "trigger finger". Then he said it was from long term use of Dilantin ~ called "Dupyutren's Contracture".
The attached documentation states that one of the causes is "Epilepsy" as well as acoholism and diabetes.

I had no idea that this condition was linked to epilepsy.

I have this condition:

http://health.yahoo.com/ency/healthw...iImL.RQz_ogrMF

Randy
diagnosed with epilepsy and Ulcerative Colitis in 1979
- current meds are:

275mg dilantin/day
120mg pheonobarb/day
3,000mg Mesasol/day

[Bernard]

Interesting... Thanks Randy! Nice to see you again.

[brain]

I just wanted to say having been on Dilantin / Phenytoin for
over 15+ years has resulted teeth atrophy - my teeth are a
total havoc... time for fake choppers ... although a nice
Harley Chopper would even be better!

[Ruth]

Dilantin was the first anti-epileptic drug prescribed to me 59 years ago. I am 65, now.

It was new then. I broke out in a rash. Chicken pox was going around, so that is what the doctor thought I had. I kept getting worse, so my mother drove me to a hospital for children. I was 6 years old.

While in the hospital, I started losing my skin and was sick to my stomach. I had Steven's-Johnson Syndrome. I was dying. That is what they told my parents.

They wrapped me up in soft cloths each day that were wet, antibiotics I assume. My parents would only visit me when I was having my treatment. I do not know how long it was that I was in the hospital. Eventually, I went home.

My sister was put on Dilantin before I was. It worked for her. Yes, she had epilepsy as well. Dilantin, I have seen over the years, is the medicine of choice. I have known people on it who could drive, including my sister.

Even though it does not work for some people, it does work for most people.