Gill Ainsley
I was diagnosed with blepharospasm 20 years ago.
My symptoms began in the autumn of 2005 when one eye began to clamp shut involuntarily. I found this a bit concerning but didn’t really take it seriously until my other eye began to do the same which soon after.
I was very shocked and upset at this, I was a busy person with a lovely family and home, a full time job as well as being a Scout Leader in my spare time. What I now know is blepharospasm brought my life to a standstill. I couldn’t work, drive, watch TV, read, use a computer or even go out of the house on my own.
I remember going to the supermarket with my husband, and when we got to the car park I said that I could not go in, I just felt incapable of even doing the food shopping.
Sleep was also a problem, I couldn’t relax my eyelids enough to get to sleep and was often awake til the early hours of the morning when exhaustion would take over and let me sleep.
I saw a neurologist about 4 months after my initial symptoms and he immediately diagnosed blepharospasm. He also told me that botulinum toxin injections would ‘fix’ my eyelids but that I would need to have them every 12 weeks. I had those injections full of hope but sadly they did nothing to help. The neurologist tried different injection points and doses but nothing helped, my eyelids still clamped shut most of the time.
During this period I discovered that I could hold one eyelid open with my fingers which helped a little but the spasms were so strong that they still closed every few seconds. I also found that if I was knitting my dystonia eased off, fortunately I have been knitting since I was a child so it was no problem for me to carry on knitting especially as it reduced my symptoms!
We also relocated during this period which meant I had to see a different consultant. After being passed around a few I eventually saw an Ear Nose and Throat (ENT) Consultant Surgeon. This may seem like a strange move for someone with blepharospasm but by this time my dystonia had spread to my jaw and neck and the ENT consultant was also a dystonia specialist and had been treating dystonia for many years.
He took over all my dystonia treatment, until then I had been seeing 3 different specialists for the dystonia in my eyes, jaw and neck. This gave better consistency to my treatment but unfortunately it didn’t improve the results. I got a little relief in my jaw and neck but no relief in my eyelids. Even surgery to sever the nerves to my eyelids didn’t help.
Then one day about 15 months after surgery I noticed my eyelids were staying open for around 10 minutes at a time, this felt wonderful! Then over a period of around 2 or 3 months they stayed open for longer until they were behaving ‘normally’.
My consultant suggested that my blepharospasm had gone into remission. Well it turns out he was correct, that was all 15 years ago and my eyes still behave normally.
I still have dystonia in my jaw and neck but I feel so lucky and grateful that I do not have blepharospasm anymore and I often stand and look around me at my family, my home, and beautiful things just because I can, I still do a lot of knitting too!
