My son has been on felbamate 12 years ago. By then it was an experimental med and only used for patients with Lennox Gastaut syndrome who didn't react on many meds. Shortly after starting felbamate he got unconscious, he didn't react on anything anymore and had a mouth full of thick slime and breathing problems. We went to the ER and he was admitted in the hospital. We found out felbamate has potential lethal side effects such as aplastic anemia. There is a nasty list of potential side effects here
http://www.drugs.com/sfx/felbamate-side-effects.html
We decided to stop the felbamate (his neurologist didn't agree) and decided to try the ketogenic diet instead of more meds. This appeared to be the best decision we ever made for him since the diet reduced his seizures and improved his EEG.
I was put on Felbatol in 1994-5. I was almost off Tegretol, and felt the best of my life. I got the letter about it, freaked out, and took myself off meds completely because I couldn't face going back on Tegretol. I had some nasty seizures.
I tried the Ketogenic diet last fall, but my doctor and nutritionist didn't give me adequate supervision or assistance. It worked great, but I got sick, probably from inadequate nutrition. My hospital has a pediatric program, but not an adult program. It's a shame it's not used more. I am a fan, but it didn't work out for me. I really had no help whatsoever. Eventually I got to see the pediatric dietician, but it was too late...
I only got back on Felbatol by hounding one epileptologist, who wouldn't increase my dose. Then I got help from another, and we are bringing it up. It's helping, but I'm in a lot worse shape than I was in 1994. My life might have been very different if I hadn't freaked out and quit.
I looked into it and Felbatol is not as dangerous as they make it out to be. They make you think that if you take the stuff you are playing russian roulette. Yes, your chances of Aplastic Anemia and Liver Failure are greater, but you are not likely to get either to begin with. There have only been a small handful of AE cases in all the years people have been taking it. Almost all of them were in the initial group, and most of those were at high risk to begin with.
Thanks for the links Nakamova.
Aloha Bird, I hope the test goes well and that you have some seizures recorded, but they aren't bad. I was so happy being in the hospital and having someone take care of me for once, that my blood pressure went down 20 points.