Hi Aaron,
I stopped looking at this board regularly because there just isn't that much activity. But tonight I thought I would see if there was anything new here. I'm sorry no one has replied yet to your post. Just know that all of us are suffering to various degrees with our dystonias. Depression with this is common and you are not alone having this condition even though it seems that way. When it gets the best of me, I think about the fact that dystonia is not the only thing that causes great suffering to people worldwide, and so all of us need to find means to cope and try to live our lives the best way we can. If you look at some of the past threads I am the person who posted here about the surgery for cervical dystonia called selective peripheral denervation, which I had back in 2004. If you are a good candidate for the surgery it can help you live a more normal life. However, there are permanent consequences from the procedure that you will be left with. It has however improved my quality of life and allowed me to do many things that I could not before. And if Botox, muscle relaxers and so forth are not helping you at all, it may be something for you to look into and discuss with your neurologist. If you want more info send me a private message.

Hi There,

I Also Have Cervical Dystonia, Since 1990 Went Through The Botox Injections Got Little Or No Relief, I Was Going To UCLA For All My Treatments, Was Finally Referred To A Neuro-Surgeon, I Chose Then To Go Through The Experimental Surgeries, I Shouldn't Say, ' Kill Or Cure ' But The Pain Was So Terrible, I Put My Life In The Hands Of God And My Surgeons, I Have Since Gone Through 9 Operations, The Pain Before Was Probably A 10 !! Now The Pain Is Generally A 4 Or 5 !!

Yes, I Still Have Bad Days, But I Can Hold My Head Staright, And Live Somewhat Of A Normal Life, Before There Was Never Any NORMAL.

Please Feel Free To Ask Me Anything - Please ?

Love Ya, Barbara

Hey Aaron,
I'm so sorry to hear you're going through this. I myself am hitting my breaking point. I've tried all the meds and I get my first botox injections on the 12th. Have you looked into DBS or anything like that? I met a guy last week who got it done and it changed his life. He has Parkinson's, but hopefully it can work just as well on Dystonia. I really hope things start to get better for you. If you don't mind me asking have you found anything that helps with your pain? I'm to the point where I almost can't get out of bed.

Again, I hope things get better and if you ever want to chat or vent feel free to shoot me a message.

Joanna

hello aaron know your not alone i to have dystonia and at times its all consuming im currently taking atran and atvan it takes the edge off but really dont help the dystonic storms once they start. i hope you can find relief and help controling this illness. i know how flusterating it is to fill so alone with this illness but remember your not alone we suffer togeather. if you need to talk vent compare notes or any thing fill free to message me. i hope you find peace emotionally and relief physically. take care . good luck

I started with cervical dystonia, in 1991. Botox did not work. I had an allergic reaction to it. I am on zannaflex. klonopin, and primidone for the dysonia. I still have some pulling, but my biggest problem now with dystonia is tremors. I now have dystonia in different areas of my body, and I also have sarcoidosis. I wish the best for you. It is difficult, have to take it one day at a time.
Angela