Blepharospasms or eyelid apraxia anyone? - Rare Disorders Message Board

shell65 · 03-17-2008, 10:30 PM

I have been diagnosed with blepharospasms and eyelid apraxia...Has anyone else got this and if so what has been your treatment? My eyes started blinking a lot back in September and now my eyes close and I can't get them open. It has affected my whole life, I had to quit work and can't drive anymore and can't go out by myself because I can't see most of the time. None of the treatments have worked such as botox injections around the eyes and in the eyelids and numerous meds....Please help if you have this or know of anyone who has it. Thank you

josie56 · 06-01-2008, 07:52 AM

I was recently diagnosed with Blepharospasms also. Last Thursday I had Botox injections, but the doctor said it would take 7-10 days for it to kick in so I haven't noticed any changes yet. This condition is extremely frustrating ... I can't drive or watch tv and it is very uncomfortable to walk while my eyes are closing up on me. The doctor also said that, other than Botox, the next best thing is joining a support group, but I haven't been able to find one yet. Any help, suggestions, tips are greatly appreciated!