Blepharospasm Bulletin Board

Just wondering about your situations. I wonder if either of you could be experiencing progression of your conditions due to medication side effect from long term use of medications to help your conditions. Seems unlikely that it is the botox not working, especially if you can see some effect on some other muscles. And BEB is not supposed to progress a lot more after the first 5 or so years, at least that's what I've read somehwere once.

Jaye - Regarding meds: Increased symptoms of many conditions has been described before for benzodiazepines - a phenomenon known as "withdrawal tolerance" - where withdrawal type symptoms develop after being on a medication for months to years, even when the dose has remained the same . Symptoms such as increased muscle tension, increased muscle excitability and spasms, increased photophobia, and often some increased anxiety have all been described. All are thought to be due to GABA structural receptor changes in the brain. I'm not sure about your use of clonazepam/klonopin or those types of meds, but just wanted to raise this for consideration.

Shirley - I know you've had some luck with ADD type meds for your bleph. I'm not sure how much you have used these or if you still use these. These meds have really not been studied at all for long term use in adults, so no one really know about the long term effects, especially on BEB. (Studies for ADD only go out 9 weeks!) Could a similar type tolerance situation be occuring where you need more? Has your metabolism changed and are you having rebound phenomenon when it wears off? Are you on any other new meds that may interact with their metabolism?

If you haven't had your thyroids tested in the past year, it might be a good idea, as thyroid issues are fairly common, and can cause all kinds of strange issues with neurological things, and with medication metabolism, etc.

Just some things to think about. I do hope you can both find some relief.

My eyes are acting up a lot more lately, but for me I think it's just re-adjusting to having a houseful of kids around all the time now that school is out. (what were we thinking when we bought our 14 year old a drum set for his birthday?!!) And a big family reunion coming up with major travel involved - a big stressor for me just anticipating it.