Trileptal

[kemper]

Well, tomorrow I am going to pick up my new prescription for Trileptal. After reading Karen's account of how this drug has really worked for her, and how similar my own symptoms are to hers, I am feeling very optimistic about this. The only thing I'm not crazy about are the side effects, if there are any. Does anyone know?

[Ricochet]

Kemper,

I have been on Trileptal since last November. I was taking 300mg twice a day until recently they have upped my dose to 450mg twice per day. Which is still considered a low dose.

I have had no real bad side effects. I have also been on clonazepam at the same time. As I was tapering off the clonazepam I noticed a little bit of dizziness. That's all.

Good luck with the Trileptal and I truly hope it helps you.

Keep us posted,
Karen

[kemper]

I had to stop taking the trileptal a few weeks ago, because my doctor determined that it was causing a bad side effect. What happened is that I was at the gym working out, and as I stopped and rested for a while, I became very light-headed and started getting nausea, and it got worse until I almost blacked out. Thanks to a personal trainer who got me to lie on the ground with my feet up, I didn't black out, and I started to feel better immediately. I saw a doctor that day, and they were unable to find anything wrong with me. In the days following, I would have on and off episodes of feeling light-headed and low on energy. I had never experienced anything like it in my life, and I should also add that I've never fainted or blacked out as well. I was getting very concerned, and went back to the doctor. This time I saw my primary physician, and once again, there was nothing unusual that they could find. The only answer was the list of possible side effects for trileptal, and sure enough there were a few matches with my symptoms. I stopped taking it, and after a week or so of continued symptoms due to withdrawl, I began feeling better and more like myself. Unfortunately, my ear began to get worse as my body got better. The medicine had seemed to be doing me some good. It never completely got my symptoms to go away, but I seemed to have fewer moments of frustration with my ear while I was on trileptal. Now I sit in a holding pattern. I would like to try taking trileptal again, but if it is going to put my whole body into a state of ataxia, it really doesn't seem like a good idea.

[lib]

hi kemper,
sorry to hear about your side effects, i had both muscles cut in my right ear in oct, this has helped a lot. i also have a form of palatal myoclonus and the neuro i saw is looking at the drug keppra, maybe this would be worth a try for you, it is suppose to be good for myoclonus.
he is also looking at botox for me as well.
my hearing is slightly changed, i dont hear as well when i talk loud, but its worth it.
good luck!
lib

[kemper]

lib,

I'm curious to know a little bit more about how you are doing. Did you get both the stapedial and tensor tympani muscles cut? Has this completely eliminated the symptoms, or do you still experience some problems? And lastly, you mentioned that your hearing has changed a little. Is there any way you can describe specifically how it has changed? The one main fear that I have about getting my muscles severed is that the procedure could alter my hearing, so I am very curious to know how it has changed your hearing. You have the distinction of being the first person I've met that has had this procedure done to treat myoclonus. It sounds like overall it has been a good thing for you.

Take care, Kemper

[Lexie]

lib,

I have been following your posts reguarding your surgery with much interest and would very much like to have it done. The thing that has held me back is that one of the possible complications the Dr. listed was facial paralysis. That was the deal breaker. I am wondering if your Dr. mentioned that one or if it is a one-in-a-million possiblility not even worth mentioning. I think my problem is with the tensor tympani because I get a loud booming noise in my right ear off and on all night long. I would give anything to stop it - except a droopy face.

[lib]

hi lexie,

my docs were very confidant that this procedure was very simple and they felt my biggest risk was it not working.
i had read about the facial nerve on the net but thats very rare, this tendon is easy to identify and sever, they sever it for many ear surgeries including going in because of infection. a knowlegable doc should be able to do this for you. my doc said its a benign procrdure and extreamly easy. and viola....one down and ill have the left one done on the 15th.
i can say from experience, this surgery for me was worth its weight in gold. it has given tremendous relief.
hope i helped.
where are you and who is your doc?
lib ;D