Blepharospasm Bulletin Board

I've never really worried about developing antibodies. And since I develop weakness and still occasionally get a ptosis or double vision, I know that the Botox is working.

I think that part of the problem is the fact that I did have a myectomy (2001-Anderson), changing the anatomy around my eyes a bit and thus making it a bit more difficult when injecting to know where the toxin might go. With quite a bit of muscle around the eyes, having been removed....but still requiring toxin in those areas due to continued spasms or spasms returning in the surgical areas, it is sometimes a hit or miss thing regarding sites and dosage. I realize that it is like that with everyone but I also think that a myectomy can make things a bit more difficult at times.

I think that my sites and dosage need to be adjusted but just about the time that I think that we've got things figured out, I'll develop a ptosis or vision problems.

I'm not real sure if my symptoms are just worse (progression) or if we're just getting the sites and dosage wrong. At times, I almost feel like I'm starting all over again...before I had my myectomy....when nothing was working.

Generally, my lower facial involvement clears up, with only a minimal existence, when my eyes are controlled with the toxin. When they are not, then the rest of my face starts acting up, too.

I am also more light sensitive now but that generally follows the path of how well my eye spasms are controlled with the toxin.

I did wean myself off of the small dose (0.25mg to 0.5mg a day) of Clonazepam, a couple of years ago and that may be playing a part in my increased symptoms also. I had taken it for years and realized that it didn't really seem to be helping much and didn't want to increase the dosage. Studies are showing that it has definite risks for long-term health.

So it is probably a combination of factors. All unpleasant though and leaving me scratching my head as to what to do. My injector is quite willing to work with me but I'm out of suggestions and she is also puzzled.

I almost feel like stopping the Botox and letting it totally clear my system and then starting over.