Topomax and Behavior Issues?

Re: Topomax and Behavior Issues?

Submitted by gretchen1 on Tue, 2006-04-25 - 02:56

I can't be used as an example of the typical E taking AEDs because I have a long and sordid history of horrid side effects on all but what I'm on now, which doesn't work so hot so they keep trying. My new neuro who works long distance with my epileptologist is very high on Topamax. Told us that a lot of E's are taking it very successfully. Went so far as to say he wondered if it was one of the most used AEDs. I have NO idea. And those are only his regional experiences too. I smiled but inside I'm thinking - what about the side effects? My epileptologist is too well aware of my predictable horrible side effect problem but told me that the side effects I do get are usually the ones listed only I have them severely. With that in mind I'll tell you that I just failed a Topamax trial. But that was failure number 14 too to give you perspsective of me. I'm an adult. I don't really know what the expected therapeutic adult dose is but I've been reading some E forums and many adults take 200 mg. I started at 25mg and was okay. I was raised to 50mg, still very low for an adult I was told and I think about 2 weeks later I woke up crying my eyes out but didn't know why and couldn't stop.I knew I had been growing clumsy (clumbsy?clumsey?) but that morning I couldn't manage to maneuver pouring a glass of milk without pouring most of it on the floor. I ran into door jams,side swiped furniture and kept falling. I called my doctor and he said get off of that immediately. The weird thing to me is I did think I was getting better on it though, sz'ing less. After I was off of it my husband said thank goodness, you were sz'ing alot more once they put it to 50 mg and that is the first time I was not aware of it. I am not suicidal at all ever but I felt deeply suicidal, enough that I was afraid I might do it so I called someone to stay with me. That was really strange. Every once in awhile the thought or a plan of suicide would just flit through my mind for awhile, very strongly, then leave. IOW I wasn't dwelling on it but it wouldn't just go away either. It scared me. I couldn't eat anything either by the time I was on 50 mg. I had a total and I mean total loss of appetite. I could only drink milk but my loss of appetite had been there for several weeks. I lost 9 pounds. That is one of the more frequent side effects I'm told, loss of appetite. Please remember I have failed a lot of AED trials due to severe side effects and I do think I'm on that far side of awful. I'll share my son's experience with you tho. He doesn't have my side effect problem. He's had generalized since an infant, later developed TLEs (or his mother,me, noticed later he had TLEs). Bad me. This is perversely funny but I can NOT stand his wife and I have some very good reasons not to. Just believe in that. But that is not a topic my son or I ever discuss because I know he can't stand her either but he's stuck for now. Being "normal" tho I'm always somewhat wishing he'd just send me one bashing email about her but he never has to his credit. BUT he went on Topamax? And within maybe a month? He was sending me scathing emails about his wife. But then he started broadening his horizons and started bashing everyone, which I brought to his attention and to his credit he talked to our epileptologist and he was taken off of it but he WAS because he too had lost quite a bit a weight and like me? He didn't have a reduced appetite. He had NO appetite. We talked a few days ago and I asked him if he realized how hateful he was becoming. He saida he hadn't until he looked back at some of the emails he'd sent to me. He was very surprised. But I DO think a lot of people take it successfully. But not us. My pediatrician said his practice was a lot like veterinary medicine. Many of his patients were nonverbal or limited in their verbal abilities due to age, shyness or whatever so he had to guess, question, observe, prod and poke. Seriously it is very hard to be a parent with a child with health problems. I had 4 with significant health problems and at times? It was consuming. I could never find my Mother's Manual but they all turned out okay in spite of me. Gretchen Then again maybe it's just us. Good luck. Gretchen