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help for dystonic storms

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Old 01-06-2011, 10:34 PM   #1
Join Date: Jan 2011
Location: Houston, Texas, USA
Posts: 3
MaggieClaire HB User
Re: how to stop a dystonic storm

I cannot recommend enough how beneficial Zolpidem (Ambien) has been for me. I have Dystonia, and Zolpidem stops my dystonic storms. Completely. Temporarily, but completely.

I'm going to refer to "Zolpidem" as "Ambien" because I think most people are not familiar with generic names of medications. However, for the record, I take the generic of Ambien, which is Zolpidem.

Some people with neurological disorders and even brain damage have reported miracle "awakenings" and/or temporary relief from taking Ambien, and I am one of them.

Scientists do not yet understand how this medication can have this effect (I wish they could isolate the effective active ingredient(s) so that it can be taken more frequently throughout the day for those who are benefiting from it in this manner), but they are aware that this medication has the rare potential to temporarily bring someone out of a coma-like state caused by brain damage and also benefit others with neurological disorders for at least a few hours. The scientific community claims this miracle effect is rare, but I cannot find any studies online regarding this subject. Therefore, I really have no sense of just how rare it is, and it could be that most people with neurological disorders, movement disorders, and brain damage haven't even tried Ambien.

Some may argue that Ambien helps because it's a sedative and all sedatives have the potential to relieve Dystonia symptoms, but I've tried Valium (20mg for each dose, which is a lot), and I experience absolutely no relief. Alcohol is a sedative, but it worsens my symptoms. So, I believe that says something for Ambien, at least for my body.

My neurologist has approved me to taking up to 20mg Ambien/day or evening, and sometimes I take the 20mg all at once during the more severe dystonic storms. It stops my storms *every* time. The only downside is that the effects of regular Ambien only last 2-3 hours, at least for me.

I am going to ask my neurologist to prescribe me Ambien CR to see if the controlled release provides me longer-lasting relief. However, I took Ambien CR before having Dystonia, and it doesn't pack the same power punch that regular Ambien does, and that's what I needed at the time (to get me to sleep). I may not need that power punch anymore because the main reason I take it is no longer for insomnia; I take it in the evenings when my Dystonia symptoms worsen (since Dystonia symptoms progress as the day wears on), and I'm just one of the people that can handle sedatives quite well and/or perhaps my body has developed a pretty good tolerance to it over time. Tolerance or no tolerance, it still stops my dystonic storms within 30 minutes.

Ambien can produce a somewhat euphoric effect and can reduce one's sense of pain, so it could also help your daughter to relax and perhaps have a chance at experiencing some peace, both mentally and physically.

As far as what triggers dystonic storms, for me it is: 1) emotional upset, 2) stress, 3) caffeine, 4) lack of sleep, 5) overdoing it physically, 6) menstrual cycle -- a few days before onset and the first couple of days . . . in that order.

I really hope that others can possibly benefit from this info.

Again, I have to mention that not everyone may experience relief from dystonic storms by taking Ambien, but I think anyone with Dystonia should consider giving it a try.

Perhaps I am just one of the few lucky people for which it produces a paradoxical effect (most of the time it doesn't produce a sedating effect in me), and it just so happens that it helps my Dystonia symptoms.

I just thought it was worth passing on this information, so I am. I sincerely hope it helps someone!

*big hugs*


"Pray, hope, and don't worry!" - St. Padre Pio

Last edited by MaggieClaire; 01-07-2011 at 02:38 AM. Reason: Corrections

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