Blepharospasm Bulletin Board

But I learned what was causing the problem and found adequate treatment. Yours appears to be a different kind of problem, and I will try to explain what I know about and maybe some of it will make sense.

You have described your condition as well as you can, but there are other issues that you probably may not have addressed. It may be that the tumor is causing a whole lot of your problems, but I'm not smart enough to know. Or it may be that you have an odd condition called HemiFacial Syndrome, which is at least indicated by the fact that it's not the same on both sides. HFS is caused by a facial nerve rubbing against an artery and can be treated by surgery that places some inert material, e.g. velcro, between the two. Or it may be BEB, which is what most people here have experience with. My opinion? That you need to get someone to give you a solid diagnosis. I doubt that a shrink or a GP can do that; I would limit myself to Movement Disorder Specialists, out of the set of Neurologists and Opthalmologists you may have to choose from.

Whatever the actual diagnosis, the most likely treatment is Botox injections, to supress the spasms you are experiencing and help you keep your eyes open. But in order for that to be effective, you and your doctor will have to experiment, probably several times, until you find the right dosage and site placement to work for YOU. And yes, the waiting and incessant injections are a pain, in both your face and your pocketbook.

Please stay here with us and learn all you can from all the experiences you read about, and be sure to read all the documents on this site; they are a wealth of knowledge and encouragement. We will be here too, to help.

A pox on HMO's.