Posted by: Delaine from TN and traveling ®
09/14/2015, 19:08:45
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I've had FMS since 1992 and BEB since 1999. I too resisted Botox for months but wanted to get my life back and after 6 months of alternative treatments that worked only for a few hours, I started Botox. I could not tolerate more than 34 units without more painful eyelids and dry eyes. I had to sleep with an eye mask. I tried every medication anyone mentioned on the forum, but no doctor would give me Klonopin because I had not developed spasms below the neck. I had a limited myectomy in 2000 and it helped the Botox work a little better but I was still not able to work, drive, read, watch TV, or even ride without my eyes closing. I kept calling Neurologists until I found one in 2001 who treated BEB and gave Klonopin in low frequent doses with good results. It helped me so much and I still take it as soon as I get up and every 4 hours until the last dose at bedtime. I was no longer functionally blind and able to drive when my eyes are rested in the morning hours and after laying down in the afternoon with an eye pillow to keep my eyes closed for 10 to 60 minutes. I wear tinted glasses all the time and a wrap around pair on top of the tinted glasses in the sun. I was a nurse and could not work because of the lightening, the chemical sensitivity and the functional blindness for 2 years. During that time I got short term then long term disability and in the US you have to apply for Social Security disability if you get long term disability from your job. I was 48 when I developed BEB and am now 65 and my long term work disability just ended. I have a supportive spouse and we walk and travel and have a good life. I focus on what I can do. I do have cervical dystonia now in my neck and shoulders and changed to Xeomin for the last 4 injections. I can't tell a lot of difference in the results and I didn't want to get immune to Botox and it is cheaper. Good luck in finding the formula of treatment that works for you. Everyone is different and responds differently to medications. I use relaxation techniques and manage my rest and activity. I still feel blessed because I know so many who are worse.
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