Female – onset of BEB age 42

The problem with my eyes started in 2000 when I was 42 years old. Up until then I hadn’t noticed anything wrong.

I was working in an office and trying to read and type became a real problem. I found if I shut one eye I could control the blinking, so for several months I tried this to remedy my problem. As you can imagine it was very tiring and found it was easier to just close my eyes and rest with a power nap whenever possible. The resting helped a little. but then after a while, that didn’t help either. By this stage I had started running into things when walking as my eyes started involuntarily closing and my children became concerned about my health and safety. I had to leave my job as I could no longer handle the strain on my eyes. I spent time listening to the TV as I noticed my neck would also become sore. Somehow I had to put my head up higher to see the TV or when I was on the computer. In a very short time my blinking became uncontrollable.

It was impossible for me to go without wearing sunglasses and at times I even had them on at night. My friends got used to seeing me constantly wearing sunglasses and also supported me by coming around to me, rather than me having to go to them. I felt quite isolated at times and and kept a small circle of friends. I cannot thank them enough for their support during the pre prognosis time. After almost a year of not knowing what was wrong, I was persuaded to seek help.

I finally went off to the GP who referred me to an Opthamologist. He told me as far as he could see, there was nothing wrong with my eyes. Back to the GP again, but this time my GP had an answer for me. He had found an article in a medical magazine about BEB and showed it to me. As I read it, I kept on saying, yes that is what is happening to me. We had found the solution. It was at that time I found the BEB Support Group and realised how many people were going through similar symptoms. I never made it to a meeting, but appreciated receiving the BEB Newsletter.

I was referred to Dr [name removed for privacy reasons] in Glen Waverley who at the time was mainly treating children for various eye conditions, but agreed to see me to talk to me about the BEB. She gave me three Botox injections around each eye and one in the eyelid. The one in the eyelid in itself was very painful, but within days of having the injections, noticed a major difference in my blinking reflex. From that point on I went back to her every three months and had a four injections each time.

My eyes became very dry but found an antihistamine helped stop eye infections. I had quite a few infections at the beginning that needed surgical intervention. I used eye drops as well and tried a certain brand from the chemist and burnt my eyeball and had double vision for a few years. It was at that time I started to wear reading glasses and then onto bifocals. My eyeball healed over time, which was good.

Another problem I experienced after having the injections, was the bruising left by the injections. I’m sure some people thought I had been bashed at times and for those I was able to converse with I told them about my BEB is a humorous way in less than three sentences, just to stop the worried look on their faces. Some people would tell me they know of a friend that has similar problems and realised just how common it was. I found a good makeup concealer and that partially solved the bruising issue. I also found an instant lift gel, which once put on the eyelid magically opens the eyes and makes putting on eye makeup a lot easier. I call it my liquid Botox. It tightens the muscles in the eyelid and helps open the eyes. I now get my eyelashes tinted, so I don’t have to wear mascara and that has helped with the prevention of eye infections. Trying to wear eye makeup is a nightmare otherwise. The Alice Cooper look is never a good look.

I continued seeing Dr X no matter where she was practising and became her stalker every three months. During the time I started seeing her, she has been pregnant twice and we scheduled my injections around her cesareans. Three years ago she changed to a thinner injection needle and we decided I didn’t need the injection in the eyelid. I only have the three around the eye and it is all done within 30 seconds and I’m right for another three months. Less bruising and less pain, so I don’t have the dread of needles I used to have. My two sisters have similar blinking issues with their eyes but not enough to warrant Botox injections. My Dad has Parkinson’s Disease and have often wondered if it is related to my BEB. Recently I had to cancel an appointment and went two weeks over the three month limit. The difference was amazing. My blinking became almost uncontrollable again. I saw Dr X yesterday and today I am feeling the effects of the injections, but within a few days the bruising will go away and my blinking will ease and I will be able to carry on like a normal person.

I have been having injections now for 14 years and as far as I know will have to have them for the rest of my life, but my quality of life is worth it. Injections don’t worry me and have become a blood donor, due to my lack of fear of needles. I’ve found in life, there is always a positive reason for something negative happening. This is my positive. Thank you for taking the time to read my story and I hope that I may have helped you in your struggle with BEB.

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