Blepharospasm Bulletin Board

Here's my experience for sake of comparison.

Eyelid pain was my first symptom, 30 years ago. I have intense pain beginning in my eyelids and headaches through the forehead and scalp. I often get a big, hard, bulging muscle knot below the cheekbone, although I don't have the tongue spasms like you do and my mouth spasms are infrequent. I get big, hard, painful knots on the front of my neck above the collar bone and below the chin. Sometimes I cannot move my chin right of center, and just occasionally my head pulls hard to the left.

For me, managing the pain consists mostly of Botox in the eye area, using ice for the headache and heat on the neck spasms, massage to the spasms in the neck and cheekbone (much more effective when you can get somebody else to do it), making sure when I use the computer my elbows are tucked in at my sides and hands are close to the body, and I take a Benadryl when I can't stand the pain snymore.