Female – onset of BEB late 2012 age 69

In December 2012, after a nasty bout of shingles (not on the face) I started to have trouble with my eyes. My then GP thought it could have been the medications and prescribed drops for dry eyes. The drops did not help and driving became a problem as my eyes closed involuntarily at any given time.

In March 2013 I had my eyes tested and new glasses prescribed, the Optician also noticed the “blink”, and suggested that I had mild dry eyes and gave me another lot of drops to try. Between April and June 2013 things did not improve and I was suffering with ongoing asthma which I could not get on top off – so I was back to my GP many times and he prescribed other drops to try and even a steroid ointment , my chemist was not happy with the steroid prescription and said to use for 2 days only then go back to see her – she gave me some antihistamines to try – still to no avail I was still full of asthma and uncontrollable eyes and it was winter – I was so, so down.

In July and August 2013, I went to Bali to get out of our winter, the weather there suits me and I was soon back to good health (asthma wise). Towards the end of my stay I was admitted to Bali International Hospital with a nasty bug, during my eight days in that hospital they noticed my intolerance to light and wanted to bring in an eye specialist, my daughter, who is a nurse, and was with me refused the offer and said we would get that treatment at home. I took the Bali Hospital discharge letter to my GP, in that they suggested that I see an eye specialist – my doctor did not see the need.

So my eye problem went on and on – at one stage I told him I thought I had a neurological problem – he laughed at me and said the sooner I accepted that I had dry eyes and moved on the better off I would be and would not refer me to a specialist. Late in 2013 I moved on from my doctor of 14 years and found a new GP who referred me to an Ophthalmologist.

I went to this eye specialist he also diagnosed dry eyes, I just felt so depleted. Though I must add he did order a blood test, which I found out much later was for Myasthenia Gravis – during this test they found abnormal cells which sent me off on another diagnostic route via my GP – the muscular route was not revisited by the Ophthalmologist, so after four visits and four different eye drops I asked my GP to refer me to someone else. I also thought the Ophthalmologist’s practice was run like a factory production line and there was no time to discuss your problem with the doctor, it was very impersonal.

In September 2014 I was referred to the Lions Eye Institute, this set up was so different to the last eye specialist. I saw a very nice doctor who listened to me and asked questions, and didn’t just send me off with another prescription. This doctor diagnosed Blepharospasm on my first visit – he explained what it was and how it could be treated – at last I felt I was on the right track, my condition had a name and I was not “going around the bend”. I was given my first Botox treatment that same day (not normal but I insisted), I was told it may take a few days to take effect, the next morning I got in my car and could not believe, no blinking!!! Wow I was on my way to normality again.

I had a follow up visit with the doctor after two weeks and he was happy with my progress, he also strongly suggested that I contact the BEB Support Group, which I did and met with them in November 2014. Mid December 2014 I presented for my second treatment, this has not been as successful as the first – guess I expected a miracle. The doctor explained that I’m still in the very early stages of treatment and it may take a while to get the dosage right. Even though I say the last treatment was not as successful I must add my blinking is nowhere near as bad as it was prior to any treatment.

I find night driving difficult at present and TV and computer screens aggravate my problem. I do need to get new lenses but have been advised to wait until the treatment is settled. Between December 2012 and September 2014, prior to being diagnosed with BEB I was prescribed thirteen different eye medications.

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