I thought I would post about #Dystonia, it may be a long one. I’ve had it for 42 years, my story might help someone who is dealing with something similar or does a search on Dystonia. It’s hard to forget that exact time when you realized others may not view you as “normal”. I use that terminology as it may resonate with a wider audience. People can fall outside the mainstream “normal” for a number of reasons, the internal feelings and coping mechanisms might be similar.
I was 27 when I noticed a very slight tremor and twisting in my neck that I couldn’t control, I thought it was invisible to others until one day a co-worker commented on it. I was devastated that it had become noticeable to others. The GP sent me to an Orthopedic Surgeon as it seemed neck related . The surgeon didn’t think he could help but did an operation anyway. It didn’t help, the #tremor was still there.
We moved to a larger city and the GP there sent me to a #neurologist, finally on the right track. He diagnosed it as #Spasmodic #Torticollis, which is now called #Cervical #Dystonia, or the more general term, Dystonia. If you look online now you’ll see “There is no cure for cervical dystonia. Injecting botulinum toxin into the affected muscles often reduces the signs and symptoms of cervical dystonia. Surgery may be appropriate in a few cases.”
The surgery is DBS, Deep Brain Stimulation, a similar procedure used to help #Parkinson patients. It involves surgically implanting electrodes in your brain and connecting it to a pacemaker-like device placed under the skin. None of these treatments were available in the 80s and 90s or at least weren’t recommended to me. I was put on Lorazepam, “Lorazepam is in a class of medications called #benzodiazepines. It works by slowing activity in the brain to allow for relaxation.”
Lorazepam helped control the symptoms a bit, enough to keep working, but I had to take large doses in the morning to control the symptoms in order to appear “normal” at work. I didn’t think I could maintain my high visibility job while looking like Mr. Bobblehead. This was in the 80s and 90s, views were different back then. After doing that for a decade it began to take its toll, in retrospect I had a bit of a #mental breakdown at the end of it.
Fast forward a couple of decades and the head tremors have become much worse, they’re more like severe head jerks or mini-seizures, sometimes there’s cramping in the hands. Fortunately as a techie I was able to work from home and make ends meet. I tried #botulinum toxin twice now, but it didn’t help. They wouldn’t try #DBS until they exhausted the toxin therapy but at my age, I’ll just live with the symptoms until they find a cure, if they ever do.
So my advice, avoid stress as much as possible, I’m sure it’s a trigger. The root cause could be genetic or brain trauma, they can’t always tell. Try #botulinum toxin injections to control the symptoms, see if it works for you. I’ve seen people get good results from DBS. Long term medicating has its own downfalls and may effect you mentally. Try to keep positive. Alcohol has the same overall effect on the brain as #benzodiazepines, so a bit of wine now and then may help. Good luck!
Reference articles
Reduced Global-Brain Functional Connectivity and Its Relationship With Symptomatic Severity in Cervical Dystonia
Myoclonic Dystonia – Wiki
#benzodiazepines #botulinum #cervical #dbs #dystonia #mental #neurologist #parkinson #spasmodic #torticollis #tremor
https://whatsupeh.ca/2022/12/06/living-with-dystonia-for-40-years/
