Drugs that worked but you had to quit because of side effects

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How many AED's have you taken that completely controlled your seizures but you had to quit taking them because the side effects were unbearable? When I was 10-15? or so I took Dilantin but I had to quit because my gums swelled up so much. And as far as I can remember, the seizures were under control.
 
I'm sensitive to almost all medicines. The only seizure medicines I have taken without any side effects was Dilantin- but my levels kept dropping with that and it didn't control my seizures very well. I've had to stop 3 other meds and if I ever go to the ER I cannot take Valium because I am too sensitive to it. (they all stopped my seizures very well but I had a lot of side effects...right now, we are looking for a drug with the least amount of side effects)
 
Four have not helped Rebecca's seizures and four have had terrible side effects.
I am not a fan of the quality of life that has been brought about due to AEDs.
 
Topamax controlled the seizures perfect but I lost too much weight. Depakote worked well also but my stomach couldn't handle it anymore. Dilantin works the best but sometimes the levels are so low I have to get off it and come back on. I've noticed that many people have problems with their gums, I never had that problem.
 
Tegretol CR as monotherapy has worked really fine for me, without any side-effects (1200 mg/day). But when I began to take also Neurontin, Tegretol CR "got mad" and I had to stop taking it and starting with Lamictal instead.
 
Dilantin, Phenobarbital, Neurontin, Still take first three. Also taken in the past were Zaronton, Mysoline, Klonopin & Ativan and a couple other I can't remember right now. Crappy memory!
 
Phenobarbital
Tegretol
Trileptal
Keppra <--- Kep-RAGE would be more like it


and sadly my baby .... Dilantin
:(
has been put on the Allergy list.
 
I had to quit Keppra because it was making me SOOO moody and angry all the time. Like I was cussing people out and yelling at people I wouldn't normally yell at.. My neuro had me try just taking it at night, but it still made me really exhausted all the time, so now I'm just on Topamax, and I have no trouble with any side effects worth complaining about. I also have to take the valium 3 times a day though, and sleeping medicine. I'm finally on an anti-depressant too.. Thank God!!

Anyway, I feel SO much better now that I'm off the Keppra. I don't go off on random people. So I think the people around me feel better too, lol.
 
How much trouble did you have convincing your Neurologist that you couldn't take the specific AED anymore? I see my Neuro Monday but he doesn't sound very open to me quitting either the Tegretol or the Keppra. (I have an insane itch that has me scratching myself until I bleed) I have already lost my driver's license so I might just tell him I'm going to go back to the 1200 mg of Tegretol XR only whether he likes it or not.
 
How much trouble did you have convincing your Neurologist that you couldn't take the specific AED any more?

No troubles at all.

I tried with combination of Tegretol CR and Neurontin. At first I was so glad that it was helping me really good, that I simply didn't think much about side-effects. I tried to be patient, but when some three years passed I couldn't stand them any more. Fortunately they didn't affect my cognitive capacities, so I could work normally. But I was losing appetite & weight, I had often double vision, didn't sleep at all etc.

I was afraid that medication change will be straining and/or that new medicine maybe wouldn't be as effective as the old combination. This made me (unnecessary) indecisive

At last I went to my neuro and explained him in detail what was happening. In his opinion the amount & strength of side effects were unacceptable and that we should go for a change.

Changing went very good, without seizures, zombie states etc. Now I'm happy girl using Neurontin & Lamictal.

The only side-effect I feel now is insomnia. It is slightly better now. But I am also "naturally" sleepless person (all family members on my father's side are raving insomniacs too), so I don't know exactly in what amount this insomnia is consequence of medicines. Maybe I am even somewhat "unfair" to medicines. Namely, I've noticed that we tend to attribute all our troubles, big an small ones, to AED's ... ;-)
 
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I am currently withdrawing from Dilantin, my only AED. I didn't like the way it was slowing down my reflexes and making me tired, also had problems with blurry vision and sensitive gums. So far, relatively ok, a few wipe-outs, but nothing drastic. Been two weeks now.

Actually, my seizures seem to be more heavy-duty (when they get loose) when I'm taking AEDs. I don't like being in a chemical strait-jacket.

To make things more complicated, I'm also taking Celexa, an anitdepressant that tends to make me feel a bit more "up", especially with a cup of coffee or yerbe matte. If I want to do this right, I probably ought to quit everything.

I'm currently working with taking neural vitamins and doing feedback/meditation. Lowering GSR does seem to be controlling this somewhat. In the long run, I'm going to make a case with the state insurance agency (MassHealth) to cover EEG feedback training.
 
I took Kater off of the Zarontin that her first Neuro put her on, because she was so moody (for a 4 yaer old) and slept ALOT! I told him or his nurse on four seperate occasions that it just wasn't working right, and after having them not care, I stopped giving it to her against their advice.
 
I know the feeling PurpleAngel.

John - I felt the same way with Rebecca. A lot of weird things happen and other seizure changes on the meds. Those mood altering drugs are scary too.
 
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