Female – onset of BEB  1988

I first had issues with my eye sight in 2001 following an operation to remove a growth that had wrapped around the optic nerve of my right eye, I had been checked at 6 monthly intervals for 2 years before this surgery.

At the time my job called for long hours on a computer that made my eyes very tired & dry, but it wasn’t until 1998 that I developed a tic in my left eye that was annoying but not enough for me to seek help.

I continued to attend the eye clinic at RPH every 6 months in case the growth started to return.  Dr X offered Botox injections for several visits but I was reluctant to try them. Eventually I found the spasm/tic in my eye so annoying that he gave me my first treatment in 2016 but I still didn’t have a name for my problem, the injections worked really well and I was cross with myself for not having them earlier.

I had my next Botox 9 months later but this time I had a different result, a droopy mouth, I was so unhappy that I haven’t tried it again. I noticed on the script that I was given for the next treatment that it said Blepharospasm, the first time I had seen the word and shortly after I found an article in a senior’s paper written by John Yeudall and I felt that at last I could meet with fellow BEB’s and not be judged.

I have good days and bad depending on tiredness or stress and will be having another try with the injections, the FL41 glasses that I tested seem to relax my eye so I will be buying a pair. Don’t know if anyone else has tried this but I noticed that if I tip my head down slightly, making my eyes go up it seems to lessen the spasm a little.

Thank you for accepting me into your wonderfully supportive group.

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