Male – onset of BEB when in early 60’s perhaps even before

I had pulled into a slip lane ready to turn left. There was only one car in front of me, and when it started to move, I started to roll forward, but as I did so I shut my eyes. Bang. I had run into the rear of the car in front of me.

At the time I had been receiving IPL (Intense Pulsed Light) for dry eyes and when I told my optometrist about the accident he asked why I closed my eyes. “That’s why I’m here,” was my response. He didn’t have anything to say about what had become a serious concern because like so many other experts I had spoken with, he believed my problem was dry eyes.

The IPL didn’t stop me blinking or involuntarily closing my eyes. I had a feeling that maybe this was not about dry eyes, but that something else was happening. I had tried every other kind of treatment for dry eyes, including warm eye washes, baby shampoo, multiple eye drops and vitamins. Nothing made any difference. I even saw a skin specialist because my GP thought that may be a solution. The skin specialist sent me to an ophthalmologist who, in time, undertook a blepharoplasty operation, removing some of the excess fat from my eyelids.

I discovered that when I talked or sang or hummed my eyes didn’t seem to blink as much, and sunglasses helped to overcome the glare that contributed to the problem.

I was undertaking some studies in the area of professional supervision and was required to video one of my supervision sessions. I was horrified to see myself and to observe the way I was blinking, so when I began supervision or counseling I would always alert people to my condition so they wouldn’t think I was going to sleep while they were talking.

Finally, I decided to ask Dr Google. I described my symptoms in various ways and was surprised to find I wasn’t alone. Eventually the search led me to the site of Blepharospasm Australia (www.beb.org.au) where I read stories that were similar to mine.Surprisingly, the website referred to people who, like me, had been told their problem was dry eyes, but discovered their condition was described as Benign Essential Blepharospasm (BEB). Blepharo comes from the Greek word for eyelid and spasm is an involuntary muscle contraction.

A number of doctors were listed, and I contacted one of them on the off-chance that he may have a solution to my problem. It turned out that the main treatment was the injection of botulinum toxin into the eyelids and I commenced treatment.

After more than 12 months of receiving this treatment every three months I am delighted to report that my life has been returned, in large, to normal. I still blink, but the condition is now under control. One of the highlights was attending a Christmas event in Perth of Blepharospasm Australia where I discovered a group of people who blinked just like me.

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