Female – onset of BEB age 41

I was in my early forties when I first noticed something wrong with my eyes. It was summer and I was trying to watch the tennis on TV when I found I was having trouble keeping my eyes open. I just wanted to keep them closed as it was easier than having the feeling that I couldn’t keep my eyes open. At this point I was not aware of having spasms – just that it felt easier if my eyes were closed.

This was about 30 years ago in the late eighties. I went to my GP and mentioned the problem. I was told to get a pair of sunglasses. My eyes have always been a bit sensitive to the sun as I was very fair so obviously I already wore sunglasses outside so that advice was not particularly helpful.

I started to notice other times when this strange malady was evident and driving was one of those times. Going to the supermarket was a bit hazardous but once there, and inside the shops, the problem disappeared until such time as I had to drive home.

Next time I was at the GP I again raised the subject and this time was referred to an ophthalmologist. Dr X didn’t seem to think there was anything wrong. I then saw a couple more ophthalmologists to no avail. No one seem to understand what the problem was. I kept trying to explain that it wasn’t my sight I was worried about but that the muscles around my eyes were not behaving. It all fell on deaf ears until my GP then referred me to a neurologist.

This was more promising as he did seem to think I had a problem. He tested his theory by holding a pin up in the air and I had to look up at it for long minutes at a time. I defy anyone to do this without their eyelids eventually drooping as it is a very tiring exercise. However, he felt this proved his diagnosis correct and told me I had Myasthenia gravis. He sent me for more tests at the University and then went off on holidays – test results not obtainable until he returned. Meanwhile he had prescribed some pills.

I had trouble obtaining the medication as it had to be imported from over East I think. When it arrived I started taking it. It was not long before I felt really ill, had bad cramps and felt really bad. I thought the cure was worse than the condition! After a few weeks of this I came to my senses and thought that this really was not right so decided to stop taking the medication. It was just as well that I did because when I went back to the neurologist, he said the tests showed I did not have Myasthenia gravis and it was good that I had stopped taking the pills. I asked what should I do now and he said to go back to the GP. He also said he didn’t have a clue as to what was wrong with me.

So having wasted all that time, I was back to square one. I went back to the GP and got really angry and then he had a brainwave and said he was going to contact someone at the Lions Eye Institute. I received an appointment there and before I went, I wrote a long letter to the doctor setting out all my history with the mysterious eye condition. I thought this would save time.

It did. As soon as I walked through the door, he said “I know what is wrong with you.” Benign Essential Blepharospasm – BEB – treated by using injections of Botulinum toxin in the muscles surrounding the eyes. I could hardly believe it – after nearly two years from the onset of the symptoms, I finally had an answer. Then he said “The bad news is that I have to send you back to Dr X”. Apparently, at that time – about 1990 I think – Dr X was the only doctor in WA using Botox to treat BEB. Remember, this was the very same doctor who didn’t think there was anything wrong with me.

So I started treatment. This was done at the Lions Eye Institute to start with and the timing was very irregular. There were only a few other patients, all rather elderly. A date would be set for a clinic, anything from 13 – 16 weeks or more and then at the last minute it would be cancelled and the date would be changed. The injections didn’t last that long for me so by the time the next clinic came round, I was back to square one and the treatment had to start all over again. It was very frustrating and extremely stressful as I could never depend upon getting the injections when I needed them. I felt the clinics were held to suit the doctor and not the patient.

Bear in mind I did not have the Internet at this time so had to go to the State Library and look up medical journals to get information on BEB. There was very little of it available. This treatment with irregular injections went on for years. It was not until I got on the Internet relatively recently and started to research the subject that I discovered there were now more doctors using Botox. I changed doctors twice and got more regular treatment. I finally found a doctor that would treat me when I needed it and not to some one-size-fits-all schedule. I was having the injections every eight weeks.

Having the Botox injections was a real life changer. It is not a cure but it makes life bearable. I found it took a couple of weeks to fully kick in then I would have a few weeks of ‘normal’ eyes then it started to wear off and if I had the injections again at 8 weeks, I did not have any downtime between the two lots of injections. I could make appointments ahead and with the knowledge that I knew when I was going to have the injections, all the stress disappeared.

Some years ago during my time with one of the other doctors, I trialled another botulinum treatment called Dysport. This was not available at the time on the PBS which was a pity because it lasted 16 weeks, twice as long as Botox. I was delighted when it came onto the PBS a couple of years ago and have been experimenting to see how long I can last on it. At the moment I am up to 16 weeks. This is not to say that everyone gets the same results with either Botox or Dysport. It is a matter of how your body responds and everyone is different. Some people can last months on one set of injections, others, not so long.

You need to work with your doctor – trial and error – to find the optimal product and dose that suits you so you need to be patient. There is a lot of information now on the Internet which is very useful and there are sites like this one where you can find support and are able to contact others in your area to compare experiences.

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