Help for a friend - Epilepsy Message Board

jackie1216 · 06-22-2004, 07:51 AM

Hi,

i'm trying to research the side effects of dilantin for a friend. He recently went to the doctor with complaints of major side effects of the drug. The doctor told him it was all in his head and he should seek a psychiatrist. His side effects are, headaches, dizziness, nausea, forgetfulness...........

I think he started taking dilantin in february. From my limited research I see that those above side effects are common in dilantin. My questions are:

1) how do you all feel about what this doctor said to him?

2) is there any other medication out there that could help him feel like a normal person again?

I feel so bad for him. He's miserable. He's only 29 and shouldn't have to live life this way. Please help in any way you can.

Many thanks,

jackie

LisaGuthrie · 06-22-2004, 09:45 AM

Hi Jackie,

You are a very special person to help your friend work through this. Many Kudos coming your way!!!

There are those on the board here who have been on Dilantin for years and had no issues and then there are those who feel it caused them more harm then good.

We fall into the last group. My son was placed on Dilantin at 10 mths and remained on it until 17 mths. I feel it was a huge issue for him from a developmental point. He also had gum over growth, abnormal body hair growth, and toward the end it started to affect his liver and blood cell counts. That was it for me... if it's causing that many side effects we can see and measure what in Gods name do they think it was doing to his head! And it wasn't stopping the seizures either.

As far as the Dr. Your friend should try and find a new one. A dr. should never tell a person on these drugs it's all in their head. Has he had a recent blood level test, those sound like toxic warnings to me... Forgetfullness is kind of a given with many of the drugs however because of the nature of seizures and how the drugs work to control them.

Yes, there are other drugs on the market that are a lot newer, with less side effects. But without knowing what seizure type your friend has I couldn't help you there.

Keep us posted and PLEASE have your friend get a level check!!!! It's very important!!!!!!!!

Love and light,

Lisa and kids

curse · 06-22-2004, 04:50 PM

Did that smart butt Dr. bother to check his level? Too much dilantin in the system can cause those problems.

dalesgirl · 06-22-2004, 04:54 PM

Quote:

Originally Posted by curse

Did that smart butt Dr. bother to check his level? Too much dilantin in the system can cause those problems.

That's EXACTLY what I was thinking!! Those are almost the EXACT symptoms my husband was experiencing JUST last week. The week prior his neurologist had up his dosage of Dilantin because his blood level was 3. Six days later he started these symptons and the doctor ordered a blood test this last Friday. It was 22. The doctor told him to not take any more Friday, and none Saturday and started a different routine and we go for another blood test soon. By Sunday all those symptoms had subsided.

tkdmom96 · 06-22-2004, 05:20 PM

DUH! Anythime there is an increase/lowering of a med a doctor should request a blood level approx. 7-10 days, after the change. We have done this for YEARS now, along with regular/routine blood levels (and liver enzyme checks)every 4-6 months.

And anytime Katie experienced side affects the FIRST thing they did was a blood level...not tell a 3, 7, 10, 14 year old to see a pyschiatrist! Yeeeeesh!

I think he needs a new doctor who will pay more attention to his patients!

Vicki