cervical dystonia

Posted by Nissa @nissa, 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?

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.

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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.

Liked by Lo

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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

Liked by Lo

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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.

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@tmnm

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.

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

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@sweetheartsdance

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.

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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?

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@sweetheartsdance

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.

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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.

Liked by faeriechild

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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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Hello All

As you are all discussing Dystonia, I thought you might find this video on DBS interesting. The video mentions that this can be used to treat Dystonia,

https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/deep-brain-stimulation-precision-using-segmented-leads/VID-20457940?

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