I was in constant pain on the right side of the base of my skull that wrapped around my scalp and went behind my eye. My scalp hurt so bad to shampoo. I was sent for an MRI with contrast, which takes about 90 mins. I learned that I’m not claustrophobic, whew. They caged my head and then secured it in a block and up the tube I went. Of course, my dystonia was fighting the forced position of the cage, ouch!
It looked as though there wasn’t enough room at the tonsil of the brain that leads into the spine for spinal fluid. This is called Chiari syndrome. The only treatment would require shaving some of the brain. I went straight to surfing the internet and was horrified to learn how hard life would be. I was really sweating it and thank God the neurologist that specialized in Chiari discovered I had occipital neuralgia.
I don’t know if the occipital neuralgia made the cervical dystonia worse or vice versa. As it worsened, so did the pain. My movement neurologist started me on gabapentin, which is a Neurontin. It slows the neurons from firing so quickly as works on nerve pain. I started 300 mg three times a day. I had a very hard time sleeping. I was lucky to sleep 20 mins at a time. The lack of sleep made my whole body ache.
Here is a video of my cervical dystonia. The start of the video is my head at baseline, me not fighting my muscles. You can see an overflow triggering my blepharospasms. Keep in mind, I have Botox to help my movements. Without it, this wouldn’t be possible.
The more I fight my dystonia, the more noticeable it becomes. I twist my torso to compensate for range of motion. I strategically sit in meetings, so I look left. I do the same thing at the dinner table. At this stage I don’t think it’s too noticeable I had a neurological disorder.
Some days are more painful than others. I’m not always sure why. I can tell when my injections are wearing off.
Me Myself and My Dystonia 