Tena,
Like Paula, I found being off and dystonia went together.
I used to find the dystonia much worse the longer I was off and the only cure for it was sinemet (when it finally kicked in.)
You have my sympathy as I clearly remember the pain as almost unbearable, however I no longer get it (if that's any comfort!) since DBS 2 1/2 yrs ago.
Lee
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Quote:
Originally Posted by paula_w
Tena,
I'm sorry to say that the only thing that helps my dystonia is sinemet and getting back 'on'. It is incapacitating but there are certain postions and stretching I do as soon as I can. Mostly you have to ride it out. I hate it.
One thing i do is lay across the bed and let my head hang loosely face down off the side of the bed so the neck muscles aren't working and blood goes to head. I either let my arms hang down too or put them down at my side with palms up, relieving wrist tension and shoulder tension.
It also helps to have the edge of the bed or a chair or something to let your toes grab onto at the other side of the bed to relieve toe cramping. I do a few yoga stretches and breathe deep when i can.
Dystonia - looking like Frankenstein - same thing for me.
Paula
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