CASE HISTORY 9
Male – onset of BEB aged 66
About 6 years ago I noticed that as I was driving home from the city in the afternoon my eyes were drooping as if I was nodding off. My initial reaction was the resolve to get an early night. As this continued I visited an optician friend in private practice who I have had spectacles from in the past. He examined me and diagnosed a dry eye condition recommending the use of drops to stimulate the production of natural eye lubricant . I continued to use this as prescribed whilst going about my business as a board director. As the condition didn’t improve a friend suggested an appointment with an ophthalmologist who she sees. To get the referral I visited my GP who immediately recognised Blepharospasm and referred me not to my friend’s contact but to a more local neurologist. I saw him and subsequently went for an MRI brain scan which showed nothing relevant except for a very small acoustic neuroma on one of my auditory nerves which is another story. That is being monitored separately.
It transpired that this neurologist didn’t treat Blepharospasm so he referred me to another doctor who he said was a licensed injector. This was a few days before the Christmas holidays. She agreed to see me but had no botulinum toxin available but called another ophthalmologist who agreed to see me the next day just before closing for the holidays and he gave me my first injections. I have been seeing him ever since and getting on with my life.
This whole process from noticing the symptoms to getting treatment was perhaps 4 months. I now have botulinum toxin injections every 10 -12 weeks, still use eye drops for the dry eye all of which is a nuisance, but life goes on. I’m thankful for that and for the support of the people in the group. Hopefully our efforts will help future sufferers.
In hearing the stories from others this process has taken anything from 2-5 years living with the problem before diagnosis and treatment. They all think I was really lucky. What is typical is that the first diagnosis is almost always dry eye. Then the unfortunate sufferer has to scratch a round till they stumble across somebody who diagnoses the problem accurately as blepharospasm and refers them for effective treatment. It still took a three step process to find treatment. There will be people today going through this trauma.