IF IT was called "blinkers' curse" or "twitchy eye", more people would pay attention. But whatever it's called, BEB - blepharospasm, is a blinking nuisance, writes John Yeudall.
Mine started in my mid-60s when I started struggling to keep my eyes open while driving home from the city in the afternoon.
"I really must get an early night," I thought. My eyes were also gritty, as if I had sand in them, so eventually I did what any rational person would do and talked to a mate at the golf club. Fortunately he was an optician.
"Come and see me in the office," he says, so off I go and he plugs me into his very space-age looking equipment. He shows me photographs of my eyes and declares I'm suffering from "dry eye".
"We have some drops for that," he announces and I leave with a cure. "Phew," I think. "If that's all it is, I'm doing well."
For the next couple of months I apply the drops and the grittiness subsides but the blinking gets worse.
As a professional company director most of my time was in board meetings. Suit, tie and all the fruit.
When you can't keep your eyes open they think you are losing it and from one board I contracted the nickname "Blinky Bill".
They can be cruel but I smile indulgently while applying the drops.
After weeks of propping my eyes open to watch TV and eat, I make a visit to my GP I to see if I can get a referral to some sort of specialist.
"What seems to be the problem?" he asks. On explaining the symptoms he tells me I probably have benign essential blepharospasm
and refers me to an opthalmologist (eye doctor) for treatment. Magic!
This was perhaps four months after noticing the symptoms and eventually having my wife drive me everywhere.
The treatment is botulinum toxin injections in the muscles around the eyes. The best-known brand is Botox but there are two others, Dysport and Xeomin.
For most people this fixes it for about three months, then in you go again, and again and again.
No known cure and no known cause I'm afraid. Just treatment.
Once I started the treatment I was introduced to the support group, set up by two ladies 15 years ago. The main aim was raising awareness among GPs and other health practitioners. Like the optician from the golf club.
Turns out I was lucky my period was only four months. The average diagnosis time is more than two years, with stories of sticky tape holding eyes open and severe depression. This is not just "dry eye".
These days I help run the support group with some dedicated support from fellow sufferers. We have three key objectives: to raise awareness to shorten diagnosis time; to explain what treatments are available and where to get clinical information; and to help people get on with their lives.
We are not doctors and don't offer medical advice, but if we can help to reduce the problem to nuisance level from a debilitating condition then we have made a difference.
* John Yeudall is chairman of Blepharospasm Australia, www.blepharospasmaustralia.org.au