Anyone in remission with your epilepsy or has been?

[mspang]

Hi everybody, unfortunately my seizures started back in 1993 so i've had em off and on for 18 years. Why I say off and on is because from 1997 to 2000 I had a three year remission. I had a doctor in Tucson, Az that put me on the drug Felbatol that stopped the seizures. Unfortunately though in 2000 I had to move out of state ending up in Austin, Tx. After only being there for only a couple months I was taken off my wonder drug Felbatol because my new doctor found out it caused aplastic anemia in people. Once I stopped taking it my seizures would continue and eventually turn into the tonic-clonic 7 years later in 2007. Which of course is the worst seizure there is. So what I had to go through for 3 years until my seizures are almost back in remission was ridicuous. I had the VNS implanted with not much success and also had unsuccessful brain surgery. Does anybody think I should have stayed on the wonder drug Felbatol back in 2000 now that i've been back on it for over a year now?

 

[Nakamova]

With hindsight it seems that staying on the Felbatol would have been a good idea (though aplastic anemia is nothing to trifle with either). The neurologist who took you off of the Felbatol should have helped you transition onto another med -- was this the case, or did you stop without having any other seizure treatment as back up?

My neurologist had me transition off of Dilantin (and onto Lamictal) because of its potential long-term side effects. I have mixed feelings about this because my seizures were controlled, I had very few obvious side effects on Dilantin, and it was inexpensive. At this point I do think it was the right switch to make though -- even though the Lamictal has more obvious side effects and costs more. I've been seizure-free for 3.5 years, so that's been fine, and I do think that bone loss would have been an issue on the Dilantin. Of course Lamictal may also turn out to have long-term side effects. AEDs are blunt instruments unfortunately, and each one offers the potential to make things better and make things worse -- sometimes simultaneously.

Once I stopped taking it my seizures would continue and eventually turn into the tonic-clonic 7 years later in 2007. Which of course is the worst seizure there is.

I know that you are saying in your case the tonic-clonic was a sign that your seizures had progressed and gotten worse, and that's what makes it so bad. On the other hand, I've only had tonic-clonics, and I feel lucky. It seems to me that uncontrolled seizures of all kinds can be equally disruptive or devastating for any given person, so while the tonic-clonic was "the worst" for you, it's not necessarily the worst seizure there is.

 

[Cint]

I had the VNS implanted with not much success and also had unsuccessful brain surgery. Does anybody think I should have stayed on the wonder drug Felbatol back in 2000 now that i've been back on it for over a year now?

I once took Felbatol back in the 90's after my unsuccessful brain surgery, but it was NO wonder drug for me. All it did for me was make my head feel like it was going to explode. So I asked to be taken of that miserable drug, this was before the aplastic anemia warning was issued, so good thing I was taken off the drug.

So who's to say if you would have stayed on the drug or not. IMO, the dr. was doing what he thought was best at the time.

Here is the warning on the drug now:

http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=48070

WARNING
1. APLASTIC ANEMIA
THE USE OF FELBATOL® (felbamate) IS ASSOCIATED WITH A MARKED INCREASE IN THE INCIDENCE OF APLASTIC ANEMIA. ACCORDINGLY, FELBATOL® SHOULD ONLY BE USED IN PATIENTS WHOSE EPILEPSY IS SO SEVERE THAT THE RISK OF APLASTIC ANEMIA IS DEEMED ACCEPTABLE IN LIGHT OF THE BENEFITS CONFERRED BY ITS USE (SEE INDICATIONS). ORDINARILY, A PATIENT SHOULD NOT BE PLACED ON AND/OR CONTINUED ON FELBATOL® WITHOUT CONSIDERATION OF APPROPRIATE EXPERT HEMATOLOGIC CONSULTATION.