I am 35 years old and have only had Spasmodic Torticolis sice Aug. 10,1999


Posted by cheryl chapman ® , Jan 31,2001,18:41   Archive
Some times I have a very hard time dealing with me condition. I take botox every three months in the kneck and nerve shots every three months in my kneck also. My Spasmodic Torticolis came from a car wreck were I was sandwiched. I do go to therapy but it just don't seem like it is helping much at all. My doctor took me down to only working part time because I just could not handle the pain. I would come home from work in tears. It is getting that way again only with working part time. I am just so frustrated that I can't see straight. Now all I have to look forward to is tring to find a cure. I currently live in Silvis Illinois and have found no one in this area with a form of Dystonia that I could talk to. So here I am. My boyfriend tries to understand but I think he is tired of me being in pain all the time.What can I do except for suffer until the cure is found.



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Re: I am 35 years old and have only had Spasmodic Torticolis sice Aug. 10,1999

Re : I am 35 years old and have only had Spasmodic Torticolis sice Aug. 10,1999 --- cheryl chapman
Posted by David Barton (NZ) ® (Moderator1,David Barton (NZ)), Jan 31,2001,19:35 Top of Thread Archive
Hello Cheryl - welcome to this bulletin board.

Sorry to hear you are suffering so much with your ST (cervical dystonia).

You might want to also post your comments to the main DMRF dystonia bulletin board - the url is http://www.dystonia-bb.org/forums/asd/

You'll probably get more response on that board (which covers dystonia generally) (and reach a wider audience?) than posting on this one which focuses mainly on SD = spasmodic dysphonia which is one form of focal dystonia. SD is laryngeal dystonia, and affects the voice.

Good luck in your search for answers.

David

PS - sometimes we get posts related to other types of dystonia on here - in some cases (not necessarily this one) I wonder if that's because our url is one letter (that is, a) different from the main dystonia board's url.

Ours is http://www.dystonia-bb.org/forums/sd/
Main one is http://www.dystonia-bb.org/forums/asd/

--modified by David Barton (NZ) at Wed, Jan 31, 2001, 19:48:41




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Re: I am 35 years old and have only had Spasmodic Torticolis sice Aug. 10,1999

Re : I am 35 years old and have only had Spasmodic Torticolis sice Aug. 10,1999 --- cheryl chapman
Posted by sjolin ® , Feb 01,2001,08:30 Top of Thread Archive
Hi Cheryl,

I also have spasmodic torticollis. I was diagnosed last year with this condition. My condition also resulted from an accident at work, as slip and fall. I understand exactly how you feel. if you would like to contact me directly my email is esjolin@ivillage.com

I also have received botox which I got an extremely bad reaction to now my doctor is trying to find meds to help me. I don't know how you are working at all. It is impossible for me to do anything. It is an extreme effort to just get out of bed. It has effected my head,neck left shoulder and left arm, right down to my fingers. I hope to hear from you.

Evelyn




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Re: I am 35 years old and have only had Spasmodic Torticolis sice Aug. 10,1999

Re : I am 35 years old and have only had Spasmodic Torticolis sice Aug. 10,1999 --- cheryl chapman
Posted by Judi in NC ® , Feb 01,2001,15:38 Top of Thread Archive
Several, several, several years ago, I was in an auto accident which caused cervical sprain on the left side of my neck. My neurologist put me on Amitryptiline (? spelling) aka Elavil. It is used as a mood elevator, but its effect on pain is because it apparently increases the production of endorphins (which are the body's defense against pain), plus it has also got an anticholinergic effect which can help to diminish dystonic spasms. I am once again on it for either laryngeal or diaphramatic dystonia involvement. You start on a low dose and work up. Side effects at higher doses include dry mouth and skin and short term memory disturbances.

PS - my ST is in the same muscles that were sprained in that long ago accident - coincidence?




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