Dystonia Support Group

I know the pain can be severe. I don't know what kind of dystonia you have. When I first got sick with cervical dystonia the only time I was free of pain was when I was asleep. I still have pain from time to time, but through the years it is definitely much better. I now have spasmodic dysphonia, and have had severe pain in my throat at times. It hits and then goes away. I don't know of anything to do.
Wish I could help. Maybe your dr. will prescribe something. Mine never gave me anything for pain. I am so sorry.

I have Spasmodic Dysphonia and Spasmodic Torticilla. I lost my job don't have insurance just struggling

I am so sorry. I hate the Cervical spasms!!! My doctor lets me take clonezapan or something like that.

Has anything gotten better since you posted?

Deanna

Hi, Moffatt1939. I am new to this Support Group, having been an active member of the Parkinson's Disease group for the past few months. My mother has PD and was recently diagnosed with focal Dystonia in her back. She was in debilitating pain, and her PD medications were no longer helping manage her pain.

Shortly after this most recent diagnosis, my mom was given Botox injections into specific areas of her back where she had the most pain, including spasms. Within only a few days, she was responding well to the injections. Over the next few weeks, things continued to improve. She is doing very well and, although there's some discomfort, for which she was given a prescription of Artane, her quality of life has noticeably improved as the worst of her pain has been alleviated. In late-October, she will be given her second round of injections, whereupon my mother should be on a three-month regimen moving forward.

While Botox may not be the answer for everyone, it certainly has been very helpful to my mother already even after only a first round of injections a few weeks ago.

I wish you pain relief!

I am also new to group have you asked about anti depressants they have found that there are some that help with pain now and are used for everything from cancer to headaches to arthritis and dystonia not just depression valium is a blessing from
God for me. wish you the best