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cervical dystonia

Posted by @nissa in Brain & Nervous System, Sep 8, 2011

I was diagnosed with cervical dystonia or torticollis by a neurologist some years ago.
My main question is: I sleep a lot. I feel tired a lot. Is anyone else who may have the same diagnosis experiencing this problem?


Posted by @sweetheartsdance, Sep 15, 2011

I find the same when my symptoms are not well controlled, such as when my MyoBloc starts to wear off or I get a nasty flare up.


Posted by @tmnm, Apr 17, 2012

We should start a group, i never run into anyone with dystonia, not even in the neuro lab where i get my botox injections. Which work wonders for me, until they start to wear off, like now. i'm going for a walk tho, it's a beautiful sunny cool day, perfect to change that brain chemistry.
Do any of you find that certain foods bother you too? i also have RA so i have to seriously restrict my diet just to stay feeling OK.
What's a MyoBloc, is that botox?


Posted by @sweetheartsdance, Apr 17, 2012

We should. Chronic dystonia isn't common from what I'm seeing, or at least I like you am not finding anyone else with it. MyoBloc is the brand name for the botox preparation. As far as I know it is the only brand used for injections such as ours, particularly as opposed to the type used for cosmetic purposes (they are not the same). My injections work great, except now my insurance has cut off treatment via independant medical exam. We shall see how the next few months go, I am due the end of the month for injection.

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Posted by @tmnm, Sep 15, 2011

Depression is half this or any other chronic disease, get some fresh air, sunshine and keep moving. i know how hard it is, i'm a 30 year dystonia VET.. Either move it or loose it, you will feel better. and try some therapy, physical & mental, it's good to have someone 100% on your side.
Where do you live? i will come and get you if you are close enough.

Lo likes this

Posted by @helpinghand, Apr 17, 2012

you are 100 percent right TMNM you have to keep trucking on


Posted by @lo, Oct 11, 2011

i have the same thing in the beginning i did sleep a lot, now i don't sleep as much we r working on that too

Lo likes this

Posted by @helpinghand, Apr 17, 2012

hi everyone i have spazmatic torticollis aka as cervical dystonia i have been fighting it for 23 years i am better now than i use to be with botox and oral meds if i can be of any help to anyone please post and i will answer any question if i can help you.


Posted by @bjmiller, Apr 18, 2012

My mom has cervical dystonia (10 years now) and receives Botox injections. I know they help, but I think they also cause muscle weakness, which adds to the fatigue. She sleeps alot too because laying her head down is the only thing that helps the pulling of the muscles. Has anyone had Deep brain stimulation done for this condition? We are scheduled at Mayo to discuss it.

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