Dilantin's Dark Side

jonzen

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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

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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

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Dilantin was the first AED prescribed to me when I started having sz (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: "
 

RanMan

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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/healthwise/ue4602/ue4609;_ylt=Aj2_X8XcrCXbu2iImL.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

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

brain

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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

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Dilantin was the first AED 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.
 

joey

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I know this thread is old but I've been on Dilantin 22 years and about 10 years ago is when I first started seeing my first long term effect. I had no idea it was from my meds because if you look up dilantins side effects the list is not complete. Look up peyronies disease and phenytoin.
 

cawhitern

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I have been on Dilantin for 35 years and am switching over to Keppra XR at this time. I have a lot of the side effects but am living a pretty normal life, working, driving and seizure free for over 4 years. My neurologist called Dilantin a "dinosaur" and said there were much better AEDs out there with fewer side effects and it would be for the best to change meds. The effects she mentioned were brainstem atrophy, ataxia and interaction with other meds.
The switch to Keppra is going well.....I'm still taking Dilantin until my Keppra dose is up to therapeutic.
Thanks for all the great info everyone!
 

daviscy60

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I took Dilantin for 30+ years. Most part was 300 mg/day all prior to going to bed. Late 2012 started having seizures. Prior to this my dr kept wanting me to increase to 400 mg/day. It seemed to cause me a lot of anexiety problems when trying 400. So I would take 300. After several TC seizures I was switched over to keppra July 2013. I had a really hard time going thru the getting off Dilantin and on keppra. I am on keppra 1500 mg/day only now. For some reason I always seemed to be in better mood with Dilantin and my memory was great. Now on keppra I have days of sever depression. I have lost 25 to 30 lbs. at first on keppra could not eat much at all. Wanted to just sleep and cry. U have gotten past some of this. Still have days where I'm like this. Also have noticed that if something annoys you it is really magnified. But the keppra seems to be doing its job. Seizure free for a year last July. I often wonder if some of the long term side effects from Dilantin were not what caused seizures to start again. Health food store I had mineral dialysis. Lady told me I had an imbalance of magnesium and calcium.
 

Belinda5000

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I took Dilantin for 26 years.Dilantin wiped out my memory until I came off it.There were only 6 drugs to choose from when I started o meds in the 60's.I took 300MG a day of that drug and you could never get me back on it.It didn't do anything for me.
 

cawhitern

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Daviscy60,

Congrats to you on a seizure-free year! This makes me very hopeful. My husband and I really took our time deciding if making this change was the right and safe thing for me to do. I've always been very controlled on Dilantin, so were we taking a risk? We decided it was worth it and so far, so good.
So have any of your Dilantin side-effects disappeared or subsided since changing to Keppra?
Also, I've felt super tired and a little out of sorts each time I increase my Keppra dose but it usually subsides after a few days. Hopefully once I come off Dilantin I'm hoping some of that will lessen. Also, I've started taking B complex and magnesium to help with some of the Keppra side-effects.
Side-effects, side-effects everywhere.......but I'm hoping Keppra will be an improvement over Dilantin.
 

daviscy60

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Since being off Dilantin my hearing has improved and my left hip while on Dilantin does not hurt near as much. I had very tough couple of months switching which because of some serious depression years ago when a dr tried to get me to take phenobarbital along with Dilantin. I went thru a lot of the same sleepy zombie crying with keppra which scared me enough to get a therapist to talk to. I made it thru the switch. I still have some bad days. This week has been bad. Not sure why... My age and being female could in my opinion have some to do with it.
 

Dolores

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I guess I'm the weird one on this thread in that I love Dilantin for a lot of reasons, the number one being that it controls my seizures and allows me to live my life the way I want to. I don't have any of the nasty side-effects regarding my health (my doc keeps an eye on that) nor do I have gum/teeth problems now that I use an electric toothbrush. I've been taking Dilantin & Phenobarbital for over 40 years. Even my doctor agrees that since it is working (and all else is good) why change.

I do experience some side effects but I know what they are and have figured out how to deal with them. Short term memory loss is the biggest but I'd rather forget a name than have a seizure. And I have found that for long term memories, while the links to the memories may have been compromised, I can often get back to them especially if they are really important to me. Just takes me a bit longer. Main thing is to not let it frustrate me because stress will just switch mind into "deer in the headlights" mode and then I can't think of anything.

I do find it interesting how differently we all react to the same medication.
 

daviscy60

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I must say as far as mood and memory and sleep I liked Dilantin so much better. My personal opinion is that I wrk a job where at that time I was inside. No sun shine. Wonder if maybe vitamin D def could have caused imbalance of my magnesium and calcium. Or it could have been hormone changes. What ever was causing recurring seizures. I did not want to lose my job. Lost one job in past because of seizures. Do do what neuro says.
 

Joyful

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I've been taking dilantin for abt. 34 yrs. now (since I was 10 - am now 44) I also noticed many of the side effects you mentioned, jonzen. I'd like to get off of both, but don't think that will be possible.
 
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