Still hoping
My Dystonia symptoms started at age 13 or 14 and I'm 64 now. I remember sitting at my desk in school one day. I sat between two girls who would have me pass their notes back and forth. One day I just couldn't turn: I had to hesitate and it was as though I had lost my natural flow of movement. I remember periods of extreme anxiety and having an out of body feeling when the panic was really high. As time went on I would get the feeling of my neck freezing in place and being in loud, crowded places made it much worse. I don't want to write an entire book here but will say that I wasn't diagnosed until I was 37. I had no clue what this was but imagined that I had every disorder under the sun and putting a name to it was a relief to say the least. I have had relatives, older than me who had it, and were told they had something else. I met a woman in a bar while out one night; her head was bent to her shoulder. I told her I knew what she had. We talked about our necks and I asked her where she lived. It turned out her grandmother and mine were sisters.
Before that first episode at age 14, I had gotten slammed in the back of the neck by a basketball. I also had very, very frequent strep and viral infections as a young child.I have read about PANDAS. I think this is the cause of my disorderI have tried many treatment, nothing helps the tight muscles. I just ordered my first CBD oil two days ago.
Find people with Dystonia Disorder through the map. Connect with them and share experiences. Join the Dystonia Disorder community.