Yes. I can most definitely relate. Every day normal things are quite challenging. I don’t know anyone else that has it either so no one in my family understands and they sure don’t want to hear about me talking about it. I don’t think they know what to say because they don’t understand it.

Yes, I can definitely relate. I do not know anyone else who has it. I am not sure where you have it but I have it in my neck. I have had it since I was 40. It started off gradually and has continued to get worse for 13 years. My hands are starting to have spasms and my right arm tingles. It affects my entire back because the way my head pulls. People ask if I am ok why am I holding my head so I send them the link to Cervical Dystonia. I have tried Botox about 7 times, it was worked 3. I finally stopped because it cannot be good. I have tried muscle relaxers and they knock me on my but. I cry out of frustration and pain but lately I feel like it could be so much worse. I am trying to stay positive, it is hard. Also, I work at a desk all day long looking at a computer. It is so hard to see the computer when my right eye is looking totally to the right. I have to look out of the corner of my left eye. One more thing, my hands ache from holding my head straight.

Hi, I just read your post and I can relate as well. I also have cervical dystonia and it's also in my neck. I have had botox injections three times and it didn't seem to help very much. Maybe a little but not enough for me to really feel comfortable. It seems I'm always trying to hold my head down when it wants to go off in one direction! Back and to the side slightly. I get so tired at the end of the day I just want to lay on the sofa because that's the only place I feel comfortable.
I avoid social situations where I have to sit in one spot for a long time because that's when it is most noticeable and I feel like people must think I have Parkinson's!