unstable on Dilantin - Epilepsy Message Board

mleah · 06-16-2003, 11:16 AM

I have been taking Dilantin for 17 months. I know that for many this medication works well, however, that is not the case for me. My Dilantin level fluctuates very rapidly. This results in my level dropping to 6 which then causes me to have a seizure, or over 10, which causes me to walk to the side, be overly confused, etc. The Neurologist knew that I was 'stable' when my level was at 9, however, it appears to be impossible for me to remain at this level on this drug. I live in a see-saw way of living.

Recently I changed Neurologist who thank goodness recognized that Dilantin had not been working, and knew to take me off of it, after he has introduced another anti-seizure med into my system.

The new drug is called Keppra.....is there anyone else who takes this drug? If so, could you please tell me what you know about this med.

Thanks

Mleah

KittyMom · 06-16-2003, 03:28 PM

Mleah,

I was just taken off of Keppra. I think my case is rare but watch just in case.

I had partial control of my seizures, about 1-2 a week, but the mood altering effects it had were enough to send me over the edge. I had some depression(very bad at the end), mood swings, anxiety, and I couldn't be happy with anything. My family wanted to divorce me. It was the worst medication I have ever taken!!!

Don't get me wrong, my case sounds rare and I know of a few people who take it and are doing fine. My body just didn't like it. I don't want to scare you so please don't take it that way. I just had an adverse reaction to it is all. Just watch your feelings and your moods. If you do get them then they might go away agter 6 weeks.

Sorry if I scared you! Don't be! Just let us know how you are doing on this.

God Bless you,

KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

giupset · 06-16-2003, 10:51 PM

If you were on generic Dilantin, Phenytoin, this doesn't seem to work well for some reason. If you were on the brand name then I don't know the explanation for this.

Keppra causes depression, just as many other anti-convulsive drugs but at different degrees. Plus its a new drug on the market (less than 5 years) so I'd suggest that you watch carefully.

LisaGuthrie · 06-17-2003, 11:24 AM

Hi,

My son Jake has been on Dilantin since Oct and it's been the worst. Part of the swing in numbers could be the differnce in what time of day you had you blood draws. But...

After 8 months we are on schedule to take Jake off by mid July. Like you we were never able to get a stable level. We tried blood draws at the same time with the same meal and nap schedule and still up and down, up and down.

His last 3 blood work ups showed an increase in his liver count and decreases in both his blood cell levels. He is also showing several other signs of side effects. His hair is growing down into his eye brows, he's got a hairy little back and butt and he's having a really hard time teething because of gum swelling.

I'll be a happier Mommy when he's off it. I know that it's had to be causing him balance issues as well. As we lower the dosage, he's getting closer and closer to walking.

Good luck to you! Keep us posted.

Lisa
Jake 12/31/01 - I said Mommy agian this week - after being away for 7 months it's back

!

mleah · 06-18-2003, 07:17 PM

Man O man, I don't know what I would do without you guys around.

I was taken off Keppra yesterday after I had a severe behavioral outbreak. Now I'm only on Dilantin until I see my Neurologist again.

I appreciate everyone's reponses, and please don't worry about frightening me, I need to be as informed about these drugs as possible.

I'll keep everyone in touch once I am started on something new (here I go again!

Please just keep your fingers crossed that I don't have another grand mal seizure before seeing the Dr.

Thanks again,

Marcia