Female – onset of BEB age 65
The first time I noticed a problem with my eyes was in about 2010. They were quite sore and I had started blinking more than usual. They were very sensitive to light (although always had been), it was now difficult to read, use the computer and drive. My GP suggested it could be conjunctivitis and prescribed anti-biotics. These didn’t help the problem. I asked her to refer me back to the eye specialist who had done LASIK surgery in 2003. I eventually got in to see him and he told me it was my age. He mentioned my age lots of times and said as you get old your eyes get dry. He told me to get some eye drops. I tried lots of different types of drops but none seemed to help.
I persevered with the drops for several months before asking my GP to refer me to another eye specialist. It took five months to get an appointment and many hours in his waiting room. Unfortunately, his only solution was I had dry eyes and to put drops in, also hot compresses twice daily. He gave me a printed sheet explaining that I had Marginal Blepharitis.
I seemed to be getting nowhere. He never gave me a chance to discuss my problem further. He could see that I was blinking a lot as he had to hold my eyes open to examine them.
Months went by and by this time my GP was prescribing anti –depressants and referred me to yet another eye specialist.
In 2014 I saw the new ophthalmologist and the consultation was even quicker. Yes, I had Blepharitis, and there is no cure. Just manage it with drops, hot compresses three times a day and do lid cleaning. He also told me off for changing doctors.
In 2015 my GP suggested eye lid surgery to make it easier to open my eyes as I was now tripping over and bumping into things and people. It was an expensive option but did help.
By this time I had given up on Eye Specialists and went back to my optician at Garden City. She is always interested in my problem and suggested several treatments with IPL. It wasn’t as successful as hoped, so she put in tear Duct Blocks to try to keep the drops in my eyes longer. They were helpful.
In July 2016 my husband and I went to Phuket for a month holiday as usual. Three days before we were due to return home, I tripped over around the pool and fell heavily snapping my right humerus bone in half. This was a really traumatic time. Fortunately, the Insurance covered the Op. and Hospital, but I realised then how dangerous it was to have the problem of my eyes constantly blinking and closing shut.
During my convalescence for the arm surgery my general health deteriorated, I was very depressed and tried to avoid going out as my eyes seemed to be constantly closed and I was frightened I would walk in front of a car.
It was about this time my sister Judy had been reading an English “ Lady” magazine and came across a story about a woman who suffered from BLEPHAROSPASM and had been treated with Botox injections.
My sister recognised the symptoms she described were exactly the same as what I was suffering. The difference was the name. Mine was Marginal Blepharitis and hers was BLEPHAROSPASM.
My sister researched this new name on the internet and came up with lots of information, all detailing my symptoms. She then searched for a support group for this condition. With luck she found BLEPHAROSPASM AUSTRALIA and contacted them.
I received a phone call from Lesley Reynolds, Member Liaison officer with Blepharospasm Australia, who assured me there were quite a few other people in Australia suffering from my condition and the Support Group holds their meetings in Perth. Fortunately, the next meeting was to be held in 6 weeks’ time. In the meantime Lesley gave me the names of doctors who treat Blepharospasm so that I could make an appointment to consult one.
I asked my optician to give me a referral and she kindly sent a detailed report on to my new ophthalmologist.
My sister and I went to the Support Group meeting. It was great to meet fellow sufferers and learn how they coped with the problem. I felt that at long last I was getting somewhere.
I have now had my first consultation with my new ophthalmologist. He discussed the problem and told me the treatment I would need to keep it under control. He gave me 14 injections using half a dose which he said was a lot but I needed that many. It was very painful but certainly worth it. I had to return in 2 weeks for a top-up but he said at that time that he was happy with the result and I didn’t need a top up and to come back in 2 months.
It is a shame it has taken so many years to finally get some relief.