Blepharospasm Bulletin Board

I can relate to what your saying, but I'm going back into the early years of my diagnosis. Hope this helps you cope with this devastating problem.

Your third paragraph, you mention sore eyes (I can remember when I could not push my eyelids open when I was totally blind because of the soreness and pain that existed. The light sensitivity was terrible and that's when I bought a pair of very dark wrap around glasses that I wore at all times, in and out. Some times I wore three pair of glasses, visor or hat.

My eyes still don't close completely and that's why I use genteal gel at night time along with eyeeco goggles or a cloth mask. This helps a great deal and the eyes don't collect any dust particles floating around the house that we don't see.

The cramps also known as spasms I have had where my checks (both moved in different directons). The pain was severe, extending to around the back of my head. Across the forehead,

I had a robe feeling to the point I could have screamed. My husband would apply warm compresses all over my head and face constantly to give me relief. For some reason, on the facial head area, I required the warm cloth and on the eyes, I wanted cooler wash rag. We did this for months prior to getting a diagnosis.

I would say that you have blepharospasm (both eyes) which is known as a facial dystonia, but you also have Meige's Syndrome known as Cranial Dystonia).

You mention seeing a neurologist and I know this is a neurological problem. Fortunately, I have found an opthalmologist who have been able to place my injection in my eyes, nose, facial area and some in the throat to control the movement - much better that where I was in the beginning.

I do question if you were on any medication that might have cause Tardiff Dyskenia causing your mouth movement and this might be brought up with the doctor that you plan to see.

If you need the name of a doctor, you might contact BEBRF at bebrf@blepharospasm.org or your District Director presiding over your area. Hope this is of help.