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Neuromuscular Diseases Message Board

Neuromuscular Diseases Board Index

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. For me, lack of sleep precipitates the attacks most frequently, which is why some of my worst ones are on planes and in late evening (when I'm most tired). I've also had a HUGE dystonic storm during a physical therapy session. It lasted for hours and then left me completely stuck in one position afterwards for several more hours. I think my worst attacks were actually precipitated by taking a drug called Sinemet, which is levodopa/carbidopa. It's a really unexpected reaction to that kind of drug, especially since my dopamine levels are severely low (they thought this was dopa-responsive until they tried me on the drugs and everything got so much worse).

One thing I can tell you about the attacks is that when they happen, I am HOT. Sweat is pouring off my entire body from the effort of it all. It's also so unbearably exhausting, like running a marathon once and being told you have to immediately start again without a break. My heart races and it becomes difficult to breathe. I also get thirsty from the effort.

I know some people like to take something that makes them sleepy during an attack like valium or something. I haven't taken anything during an attack except that the ER gave me a tiny dose of benadryl. The benadryl made me sleepy, which helped stop the attack, but it had already been going on for 4 hours before they gave it to me.

I had a dystonic storm yesterday, which really wasn't full blown. My arms and back were shaking, but that wasn't terrible. Then it turned into a full blown storm. My whole body stopped moving, I was seized up in all my muscles, stuck in a position that made me look like an overturned beetle. But not my worst, so hopefully I have time before the next one.

Good luck.

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