Female – onset of BEB 1990
In around 1990 ( I was 41yrs at this time) I started to notice that my eyes would water a lot and want to close when I was watching television. Annoying, but of no consequence. I would slide down in the lounge so I could see the tele with my eyes half closed. A good look, not.
At the time I was doing 70 km odd to work. I loved this time as it was a buffer between home (where we were also running a business) and work. And time to myself, in my very busy life. But soon I began to have trouble with my eyes wanting to close. So once again I used the slide down in the seat method to allow me to see through the slit.
I then went to my doctor to talk to him about it. “Oh you’re stressed ”. I emphatically told him I didn’t have this problem because I was stressed, I was stressed because I had this problem. To no avail. I kept getting worse and eventually agreed to go to a therapist. Maybe he was right. Oh yes she said, you don’t want to face the bad things in your life. And there were plenty of those at the time! By this time I couldn’t drive anymore, I couldn’t work and I had gone from being a very active person and an avid reader to nothing. I would threaten people with death if they moved anything in the house or left a chair out etc, as I would constantly hurt myself by running into things. Because of my bloody minded nature I continued to cook and would constantly burn myself. I think I wore the burns and injuries a bit like a badge of honour in that I wasn’t going to let this thing rule my life. This continued for about 3 years. I can remember once my daughter and I were in Adelaide shopping for some silk for me to make a christening gown for our first grandchild. I would hold onto the baby pusher and my daughter would guide me. On this occasion she walked through open doors forgetting that I was in direct line to the ajar doors. Slap bang I went straight into them. There was a lot of crying, mainly on my daughter’s part. It wasn’t long though before it became a sauce of great hilarity as did many of the BEB stories.
Then of course I had to make this dammed christening gown! Well, I did it. Except for the button holes. I would sit up at the dining room table with the garment and sewing machine for hours on end just waiting for my eyes to open so I could do the next bit. If I was lucky I would have half an hour. I still feel an immense sense of achievement over this. And anyone with BEB will understand the tricks I would indulge in to get my eyes to open. Humming, singing, touching them, trying to surprise myself, tapping, trying to pretend I didn’t care whether they opened or not. And on the list went.
I decided that it was not going to beat me, so I would concentrate on my eyes opening and when they did, do it over and over again. I felt like I was teaching another bit of my brain to take over the job. I did this for months and slowly my eyes started to be easier to open. They didn’t ever feel like the automatic opening that people without BEB have, I would have to consciously Think about it, but it was happening.
So slowly I started to get my life back. The tired eyes, the wanting to be shut rather than open being light sensitive etc, never went away. And I would sometimes feel my eyes doing weird things.
Then in around 2001 I was lying in bed one morning listening to Dr Norman Swan and he was talking to a doctor in Victoria who had BEB. Well, I sat bolt upright and announced to the world that that was what I had! Nobody was listening of course. I was home alone. I went and printed off the transcript of the program and read it a couple of times. I mentioned it to husband and friends, but never anyone in the medical profession as I felt they wouldn’t believe me. In around 2004 I went to get new glasses. The optician had to hold my eyelid up to see my pupil. Of course I believed this had happened to me because of the BEB but said nothing. She mentioned that it could be fixed. She sent me along to an ophthalmologist who did such things. He did a great job. I had two lots of surgery, one to lift and realign the muscle above the eye and one to fix the eyelids. This transformed my sight as it let a lot more light into my eyes. The ophthalmologist said nothing about me having BEB.
In the last five years I have felt that my eyes were slowly getting bad again. More blinking, not wanting to stay open etc. My children had also informed me, with their brutal honesty, that I had developed a head tremor. GREAT, I thought. So for the first time in years I went and googled BEB.
About 2 years ago I went to get a new pair of glasses. The optician, just out of the blue, asked me what I was doing about my blepharospasm. I burst into tears. At last, a professional had recognised it. The outcome of that was that I spoke to my GP about it and she referred me to Professor X here in Adelaide. She has been giving me botox (about every 4 months) for about 18 months and she has also done another lot of surgery on my eyelids.
It seemed a long lonely journey. I tried to contact a support group a few years ago but didn’t have any success. So to be in touch now is wonderful. I would like to start a group here in S.A. I would also like to make the medical profession more aware of BEB. Thank you for taking the time to read my story. It means a lot to me to be able to share it.
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