Dystonic attacks or storms

Hi all,

I have had generalized dystonia for several years after treatment with reglan and compazine. I am very senstive to medication and other triggers and often experience dystonic attacks.

Recently I experienced a severe attack in response to the drug Lyrica that I was trying for fibromyalgia. The attack affected my breathing and I was taken by ambulance to the ER. I was discharged before I felt the attack was under control and doctors refused to give me additional treatment. Upon trying to get a follow up appointment with my neurologist I was told that she would no longer see me and I would be referred to the movement disorder specialist who didn't have an appointment for me until December. In addition, there are no other good neurologist options for me in town and I am afraid about what is going to happen if I have an attack like this again.

My questions to you are do others here have these attacks? How are they treated? If you are given IV valium, ativan, cogentin, artane or baclofen how much of the drug(s) does it take to resolve the attack or at least get you to be more functional like you were before the attack? Have you even been abandoned by a neurologist because they felt dystonia or dystonic attacks were too difficult to treat?

Any thoughts or ideas would be greatly appreciated.

Thanks a bunch!
-Jen