Hello All-I seem to have lost the other thread with people's reactions to GABA. I was curious to hear how everyone was doing on this experiment.
As for me, I am not impressed. When I took it with the Sinemet, I noticed no additional improvement. When I took it without the Sinemet, I noticed that my voice was not as good: more tremors and spasms. In addition, I felt like my ears were under water and I was much more tired throughout the day.
Since the GABA comes in horse-pill size, I think I'll stick with the 1/2 tablet of Sinemet CR (a much smaller pill to begin with) once a day. I don't know why a few people said it doesn't work with SD; it seems to work for me.
I guess that's worth the $20 I spent on the GABA?
-Karen
Re: Gaba reactions
I have been taking GABA now for about 3 weeks. When I first started to take it I was just starting the decline from the peak benefit of botox. For me, I feel that it has extended my better voice for about another week or so. Not sure if it will help me extend my time between shots or not (usually 3 months apart). Right now don't think so as it doesn't seem to be helping as much on the downside.Hoping to start Neurontin this week which I am hoping will be a better aid in the SD fight. John AD/SD
Re: Gaba reactions
I've been taking about 1/2 of a 500mg capsule, 250mg/day for 1 1/2 weeks. Although I still have an AB-SD voice with some tremor, my voice requires a bit less effort to speak, and a little less breathy. But I still have an AB-SD voice (w/some tremor). I just increased dosage to about 375 mg (hard to tell, as these are powdered capsules). I also take the pill on an empty stomach, as recommended.
ReSinemet
My Neurologist says it works in about 15% of patients with focal dytonias, you must be one of them :)
Narelle
Re: ReSinemet
Thank you so much for those words of encouragement! That's the first positive thing I've seen anybody on this BB write about sinemet.I'm glad that I'm finally part of something that works. Nothing else seems to be really good. (I'm still working with my Oto to get the dosage right on the Botox! -Karen
Re: ReSinemet
Good luck with the sinemet and the botox, and merry x'mas. I don't see any difference trying sinemet or neurontin or whatever - whatever works with your particualr brain chemistry - you go for it!
Narelle
Re: Gaba reactions
I've been having fairly good results with GABA. Started taking it about three weeks ago and have noticed an improvement in my voice. I'm less tense about speaking, that's the thing. My voice isn't that much stronger, but I'm more willing to speak up and talk no matter how I sound. Which, in a sense, actually helps: by eliminating the worrying, my voice has a better chance of evening out once I get going.
I've managed to not have a Botox in over four months and don't intend to have another until I'm postively choking over my words.
I tried Neurotin (spelling??) with not so favorable results. It did improve my mood, I must say. But it also made me feel jumpy and, because of that, my speech worsened. Could barely get out half a sentence.
I must add that I don't think much of the Botox. Yes, it helps my voice but I hate the not speaking phase, I hate the breathy-voice stage and I can't stand the fact that for almost a month, I can't yell loud enough to call my dog. (Last time, the darned thing ran after a moose in the woods and I couldn't even call her back. Had to crawl on my hands and knees until I got near enough to grab her collar. I was so close to the moose I could feel its breath on my neck. Scary stuff: I almost peed my pants.)
Well, hope this helps,
Cinthia--AD, Alaska
Re: Gaba reactions
I speculate that these different treatments work for some people and not for others because there are likely more than one cause for SD. One cause may respond to a specific drug or treatment whereas another may not. I guess its the American way to look for the magic bullet.
Re: Gaba reactions
We all have unique brain chemistry, that's why neuro disorders are so hard or impossible to treat - hit and miss I reckon :)
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