Blepharospasm Bulletin Board

When I was first diagnosed with BEB, I had horrible headaches (temples, scalp and base of skull area). I would get one and go to sleep with it and wake up with it. Sometimes they lasted for weeks with no relief. I have an eyebrow that is significantly lower than the other. I have some chin thrusting also. I also have a referred pain just under my right shoulder blade. I have pretty serious bruxism and my tongue moves around a lot in my mouth. I also have Meige and cervical dystonia. I have to go to a movement disorder specialist to get injections in the back of my neck in addition to around my eyes.

The headaches were so debilatating that I went to my opthalmologist about them. He thought I may have temporal arteritis. The test for it is to do a biopsy of one of the temporal arteries. He did the biopsy which came back "inconclusive" but I never had another headache and I had one week with no blepharospasm. All the doctor could figure out was that maybe a nerve was pressing on a blood vessel and he moved something around to relieve the problem or he excised the problem in the biopsy. Whatever..t is wonderful to not have headaches.

When I get eye injections, my lowered eyebrow pops right back to where it should be only hours later. With the injections in the back of the neck, my head tremor stops. It is possible that you have Meige and cervical dystonia and you need injections in the proper sites. Your movement disorder specialist should pick up on this.

Good luck.