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Neuromuscular Diseases Board Index
Pages: 1Showing 1 - 15 of 15 for dystonic storms. (0.000 seconds)


... has been for me. I have Dystonia, and Zolpidem stops my dystonic storms. Completely. Temporarily, but completely. ... (0 replies)
... (26 replies)
... Actually my 6 year old daughter suffered a brain injury 4 years ago, and now has cerebral palsy and generalized dystonia. She began having dystonic storms in January of 2007. At first we had no idea what they were, we called the ambulance twice and had two hospital stays and still the doctors were of no help. ... (26 replies)

... Sorry to hear what your daughter is going through. Most of my dystonic storms also occur out of sleep, although occasionally they happen when I'm awake completely. ... (26 replies)
... Hi Hammy, my name is Monica and I hope you are still on this site. I also have a daughter who has the same symptoms as your daughter. She started getting hers spasms (as we call them as no one has ever told us they are dystonic storms) when she was 5 years old. They lasted for about 2 months - the doctors put her on clonazopam. They then disappeared for about 3 years , but... (26 replies)
... ntly into the left side of my neck and spasm involuntarily. Sometimes this involves an involuntary rocking motion of my torso. On occasion, I become dizzy during dystonic storms. ... (19 replies)
... Hi Hammy, welcome to the boards. As of yet, I have never really found a way to stop the storms from coming on. I suffer from Cervical Dystonia. ... (26 replies)
... As far as I know, there isn't a way to stop a dystonic storm. There are medications you can take when the storm is starting that shorten the length of the storm, but they won't stop it. ... (26 replies)
... we have her storms on there and also her spasms..! ... (26 replies)
... it can also be called sympathetic storms and a few other names. From what he has told us, the damage to the hypothalamus of her brain is what causes the attacks. ... (26 replies)
... ave a good chance trying Botox for the spasmsl. I have read of another person who receive them for their back and they really helped them so it's worth a try. My storms where in my neck, shoulder and arm and would last for 8 hrs at a time but I didn't get them everyday though. ... (3 replies)
... Thank you rayefaye. I don't get storms, but I sure go through cycles. Some days are good, and then a bad day hits (my muscles go into more spasm, down into my back etc.) and I'm stuck in that part of the cycle for weeks and weeks. I appreciate the explanation! (3 replies)
Dystonia: Help
Jun 26, 2012
... Im soo sorry to hear bout your daughter...my mom was in a dystonic storm for about 3 months straight. She is now taking baclophen, klonopin, gabapentin, zanaflex, and recieves botox injections in her neck and shoulders. ... (27 replies)
Dystonia
Jan 21, 2009
... sinemet, I had OGCs too, and severe bouts of chorea which was torture. I couldn't stop moving for hours, so my arms were moving around... then it switched to a dystonic storm with my whole body in spasm for 4 hours. ... (32 replies)
Dystonia
Jan 21, 2009
... Hey Wallis, Yeh, sounds like we are dealing with similar issues. I saw my movement disorder specialist last friday and he has referred me to the UK specialist for Dystonia for some tests. They know I don't respond to sinimet and that it actually makes me worse-but as you said earlier it's likely that severe dystonia is very sensitive to that med. Every other person I know... (32 replies)


Associated Tags: dystonia

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