Me and my Blepharospasm
Hi my name is Gill and I have miege�s syndrome, which is blepharospasm along with oromandibular dystonia with a bit of cervical dystonia thrown in to the mix!
I first noticed the symptoms late in 2005 when I was 45 and initially only had a problem with my right eye. I noticed when driving that even a very dull sky seemed too bright and made my right eye close tightly.
Before long I was having the same problem with any sort of light, looking at a computer screen, television and reading.� Very soon after that I had the problem in both eyes and within 12 months these muscle spasms had spread to my jaw and neck.
I want to concentrate mainly on my blepharospasm in this article as that part of the condition has had the most impact on my life.
When it started I was working in Newcastle University running a Professional Development Unit for Civil Engineers. Prior to that I had worked in engineering and have an honours degree in electrical and electronic engineering and was very proud to achieve chartered engineer status when I was in my early 40s.
As you can imagine I had a very full and busy life both at work and at home with two lovely sons and my lovely husband.
When blepharospasm struck I was devastated.
I could barely see to do anything, had to give up driving and eventually gave up my job. I felt that my life was changing out of my control and certainly not for the better.
I was one of the lucky ones in that I got correctly diagnosed within 4 months of my first symptoms at which point I �only� had blepharospasm. The consultant I saw told me that a simple set of botulinum toxin injections would �put me right� and I would be back to normal within 2 weeks and back to work etc.
This most certainly was not the case, the injections had no effect whatsoever which I found very upsetting, I was expecting my eyes to return to �normal� but here I was with all the same problems with reading, watching tv, walking, cooking etc etc.
I had another round of injections 3 months later but still no effect.
By this time I was learning a few sensory tricks which helped me to keep my eyes open. For example if I was knitting my eyes were relaxed and stayed open, very bizarre I know, but it worked!
Reading was just about impossible as was watching tv, and I gave up even trying to use a computer!
I wouldn�t go out on my own, in fact I avoided going out and having any social contact at all wherever possible.� I really felt like my life as I knew it was over, it may sound like something trivial but I kept thinking I can�t even go out and enjoy a coffee with my friends because I can�t see well enough to get to the cafe and am too embarrassed to go anyway!
During this period my family and friends were a tower of strength, they didn�t all understand what I was going through, but then neither did I, but they never gave up on me and continued to help and support me throughout.
Also during this period we moved house from Lancashire to Co Durham and at about the same time I began to come to terms with having this life long condition.
I obviously had to change consultant too and that gave me some hope as I thought maybe a different consultant may get a better result for me.
Unfortunately this wasn�t the case and by this time my jaw and neck had joined in the game!
After several more treatments being unsuccessful I finally accepted that this was my lot for the rest of my life. Strangely that didn�t depress me but made me determined to get on with my life and make the best of it. By this time I had developed a technique of holding one eye open with my fingers which helped although the spasms were so strong that my eyelid was frequently pulled out of my grip and still closed anyway, plus you can�t actually do that for long as it is very uncomfortable, and having your hand beside your eye all the time restricts your vision, so it was not a perfect solution but it was the best one I had at the time.
I slowly began to build my life up again, going out with friends and family, going on holiday, taking up new hobbies and volunteering for A.D.D.E.R.
I was still unable to work but my quality of life was vastly improved compared to 12 months or so before. The turning point being, when I accepted dystonia as part of my life.
I had yet another change of consultant, this time I was referred to Mr Hawthorne from James Cook Hospital in Middlesbrough. Mr Hawthorne is an ENT surgeon and also a dystonia specialist having treated dystonia for more than 20 years.
At that point I was seeing 3 consultants, one for my eyes, one for my neck and Mr Hawthorne for my jaw. He offered to take over all my treatment to which I readily agreed as I felt there was no consistency between the 3 consultants and most of all I was fed up with hospital appointments!
As before I had very little response to the injections although the spasms in my eye lids were definitely getting weaker, it was still very difficult to keep my eyes open. Then Mr Hawthorne suggested surgery which terrified me initially but after thinking about it for a few months I agreed to go ahead with the operation. In Dec 2009 I had a nerve neurectomy in which the nerves to my eye lids were severed. Sounds drastic and in some ways it was, I won�t go into the gory details but will tell you I had 20 stitches down each side of my head!
When I woke up I expected to be able to keep my eyes open, but guess what, I couldn�t!� The spasms were much weaker and in fact the spasms across my eyebrows had stopped. But, it was STILL very difficult to keep my eyes open. Oh well, I thought, it was worth a try, I haven�t lost anything.
I continued to have my injections every 3 months and about 12 months after the operation I noticed that my eyes were beginning to relax! I couldn�t believe it and wouldn�t actually say the words out loud, just kept pointing to my eyes to show my husband that they were open! This improvement continued until I got to the stage I am today and I can now keep my eyes open almost normally, I can read, watch tv, work on a computer for short periods. I can walk without falling, tripping, bumping into things, I can hold proper conversations with people as I can now see them when we are talking.
I still have a lot of pain in my jaw and neck and have great difficulty sleeping as the pain, muscle spasms and shaking head keep me awake but hey I CAN SEE!!
The video below is not me but it is someone with a very similar condition to mine, I will get a video of me put on here another day.
Click here if you are interested in the more 'technical' description of blepharospasm.