I seem to have the same problem and have tried different things but the only thing that seems to help is Called advanced biostructual correction (abc) performed by a licensed practioner in Seattle Wa.

Holy Cow, you wrote my tory. I used to be an avid runner. 8 miles a day then the dystonia got so bad, I couldn't run anymore. I went to the dr and he said don't do any exercises that hit above the neck. I couldn't stand it I go to boxing and boot camp. I too tried botox with little results. I had to pay 1,000 each time and it quick working. A heating pad gives me very temporary relief.

Hello Andreaz.
First, I am a new member of daily strength and I have joined many groups that are both of personal interest and those which I have been diagnosed with. Like you, I too have been diagnosed with dystonia in multiple sites. More specifically, Dystonia effects my face, mouth, eyes (Meige Syndrome) and it does occasionally affect the muscles in my neck (cervical torticollis) and vocal cord dysfunction similar to (spasmodic dysphonia).
Second, I wanted to address some points you make in your post. For one, you stated that you have been prescribed botox. Were you given a diagnosis then? Be that as it may, botox is prescribed for a number of reasons. But Cervical dystonia medically termed (Spasmodic Toricollis) is a condition where one has involuntary muscle spasms of the neck. Pulling of neck and or head to one side, is a key symptom of this particular type of dystonia. Dystonia is a rare neurological movement disorder that can effect various parts of the body. The causes can be genetic, physical trauma, or unknown to name a few. And it can be trigger by physical activity; e.g., exercise induce. Unfortunately, there is no cure it.

Hello members. Another tip I wanted to give to those who have been experiencing involuntary muscle spasms of the neck/head (spasmodic Torticollis Dystonia). For more understanding of condition, there is a TV Medical Drama called; MYSTERY DIAGNOSIS which airs on the Discovery Health Channel of OWN network documents real people(not actors) who were medical mysteries in the true sense of the term, and suffered with symptoms for great lengths of time, sometimes decades, before being diagnosed by specialists. There is, however, an episode involving a gentleman named, Noel Valero. who was ultimately diagnosed with this rare disorder. Please check it out at: www.tv.com/shows/mystery-diagnosis/episodes

Hi, Yes, It seems to get worse with excersize and have read that as well. I get tired more rapidly because of trying to hold my head straight so my activity levels have diminished but I'm going to do what I can and when I get tired, rest. I have learned its all about pacing yourself. It can be frustrating at times but it could be worse. I don't have cancer and I can care for myself. Maybe not as well as or as much as I used to do but I can still find joy!

Hi, Yes, It seems to get worse with excersize and have read that as well. I get tired more rapidly because of trying to hold my head straight so my activity levels have diminished but I'm going to do what I can and when I get tired, rest. I have learned its all about pacing yourself. It can be frustrating at times but it could be worse. I don't have cancer and I can care for myself. Maybe not as well as or as much as I used to do but I can still find joy! Phoenix is rising again!