Hi- I am old to this forum (spent a lot of time here in 1999 on for my son with ADHD/Autism) but new to dystonia. I believe my dystonia is due to dysautonomia so it is paroxysmal making it much harder for me to figure out triggers. Currently my only treatment is propranolol which also controls my tachycardia from the dystautonomia and when it is really back percocet because it is the only thing that calms my body and controls the pain. When the dystonia is bad it aggravate my fibromyalgia, herniated L discs and generalized dysautonomia. I have periods of dystonia where I twist and tighten up and others that are more chorea like where I jerk.
I have come to realize that even on days were I have little or no symptoms, I seem to have it happen all night. There are mornings I wake up feeling like I had a full workout and the herniated discs in my lower back will be majorly aggravated. Is sleeping a trigger akin to restless leg syndrome? I know I have to see a neurologist but since it is intermittent, not sure what they will do. I am looking into hemp CBD oil as a possible way of treating this at night. Any suggestions would be appreciated.