I think the pain from my occipital neuralgia was escalating my blepharospasms. When the pain behind my right eye got so bad, I think it was triggering some extra twitches on cheeks. I was diagnosed with Meige Syndrome, which means involuntary movement in the upper and lower part of the face. This affected my injection pattern and the amount of Botox I had to prepay for my doctor visits.
Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head. Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards.
I was having difficulty sleeping. Anytime I rolled over on my back or the right side, the pain would wake me up. (my occipital neuralgia is on the right side) When I woke up from pain, I couldn’t go back to sleep. I was lucky to sleep 3 – 4 hours a night. The pain was affecting my daily life. I hurt everywhere from lack of sleep. My scalp hurt so bad, I dreaded washing my hair. So, they upped my gabapentin to 600 mg three times a day.
I searched the internet for resources and didn’t come up with much. I did stumble onto a federally funded research study on dystonia. I jumped at the opportunity. They took blood samples that I would never know the results of. They videotaped me completing tasks of very possible dystonia. Let me tell you, I always left thinking I could completed most of the tasks just like any other “normal” person. This data is not only used to look for a cure but training for doctors to correctly identify dystonia. I still participate in this study.
I feel like this time of my life was a blur. I had foggy brain from lack of sleep, not to mention I was traveling almost every week for work. I had to schedule doctor appointments around my work schedule. It was taking a toll on my personal life that was overflowing to my family. I was helping my grandma at the time by paying her bills, balancing her checkbook, buying her groceries, running errands, filing her taxes…I’m sure you get the idea. There were many times when Kurt or Cloe had to pick up my slack and check up on my grandma to see what all she needed. We were all getting burnt out. I feel like this time of my life was a blur. I had foggy brain from lack of sleep, not to mention I was traveling almost every week for work. I had to schedule doctor appointments around my work schedule. It was taking a toll on my personal life that was overflowing to my family. I was helping my grandma at the time by paying her bills, balancing her checkbook, buying her groceries, running errand…I’m sure you get the idea. There were many times when Kurt or Cloe had to pick up my slack and check up on my grandma to see what all she needed. We were all getting burnt out.
Me Myself and My Dystonia 