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

[forward2007]

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.

 

[Bee91]

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)

 

[RobinN]

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.

 

[KAM]

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.

 

[Axa]

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.

 

[Jake]

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!

 

[brain]

Phenobarbital
Tegretol
Trileptal
Keppra <--- Kep-RAGE would be more like it


and sadly my baby .... Dilantin

has been put on the Allergy list.

 

[Kate]

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.

 

[forward2007]

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.

 

[Axa]

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 ... ;-)

 

[John-Forrest]

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.

 

[PurpleAngel]

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.

 

[RobinN]

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.