Case History 5

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Male – onset of BEB age 56

About Me: Fit –  no previous medical condition  – on no medication.

In mid-2014 we finished renovating our house. At about that time I noticed my eyes were sensitive to light, particularly indoors at night watching TV with the lights on. I put that down to the new LED downlights as they were bright, so I had dimmer switches installed. That didn’t seem to make much difference so I started to wear sunglasses inside, and whenever possible, turning all the lights off. This got to the stage of eating dinner with the lights off

Within one month, I went to a local optometrist to get my eyes checked for new prescription reading glasses and described my situation with the optometrist. I was told I probably had dry eye and to take some drops. I thought this was going to fix my problem, but after a week or two decided to visit my GP. To put this into perspective, I probably see a GP once every two years to do a check-up. The GP referred me to an Ophthalmologist.

The first Ophthalmologist told me I had dry eye and a slight case of Blepharitis. I was given instructions on how to clear up the Blepharitis. In particular, I was told it takes a few months and I needed to be patient. I was also given some more drops. I left the consultation thinking maybe I didn’t get across just how much this was affecting me because there didn’t seem to be too much concer

I diligently followed the instructions but was very concerned when there was no improvement; maybe I was doing something wrong.

By this stage, I had done my own research about dry eye. Now I’m no expert, but I was thinking if I had dry eye, I would have thought someone would have done a test on my tears and then be able to say what part of the tear I was lacking. I was also thinking for such a non-threatening term, this was pretty debilitating. I really thought I was on my own with this issue.

After a month or so of no improvement, I decided to get another opinion, so back to the GP for another referral. By now it was getting difficult to drive but I managed to work out (don’t ask me how) that singing, yelling and even eating an apple gave me some respite, but only whilst I was doing the activity. I was a very keen bike rider, the Lycra type, and it was very difficult to ride, but I did find when my heart rate went over 160 bpm I didn’t have any issues with my eyes. As you can imagine, I’m thinking this is pretty weird, but I told the GP anyway. He said the heart rate increase was probably pain transference – I rebutted his theory as it was immediate relief on the way past 160 and immediately returned after dropping below 160. I was thinking adrenaline was having an effect but wasn’t sure how. I actually thought that if I could take adrenaline, I had found a cure.

The second Ophthalmologist, started out OK. He even did a Schirmer’s test. He said my eyes were as dry as a chip. He inserted punctal plugs and told me to try different drops. Don’t know why, but he insisted the plugs were done in a hospital. I was very annoyed after waiting three hours, to have them inserted in less than 5 mins. I have subsequently learnt they can be installed in the specialist’s rooms.

I went back to him after a month as there had been no improvement. He listened to me for a few minutes before suggesting changing drops again. By now I’m really getting annoyed with the issue and the lack of attention and support from the medical profession. I’m six months in and I’m still being told to take different drops! When the specialist stood up and walked to the door, I refused to leave. He came back and then an argument started. I told him I got the fact I didn’t fit his financial model, and I went on to say I was happy to pay and all I wanted was for someone to take an interest and try to work with me to find a resolution. Suffice to say, I never returned;  I’m sure he was pleased

Back to the GP, then off to see an Immunologist to see if I had an allergy. The Immunologist did some tests and said I had an allergy to bed bugs. Our house I thought was clean, but that we had to get rid of the bed and buy a new one. The GP also arranged a blood test for me. When I was being tested, I was advised most people have an allergy to bed bugs – AAAARGH!

Now I’m really over it! I’m unable to drive, I’m having issues walking along the footpath to my office where I manage to sit for a few hours with my humidifier on as high as I can get it, sitting there with my ‘over sunglasses’ over my reading glasses with all the lights off trying to be about 50% productive. When I get home, I’m unable to watch TV so I end up listening so I can feel a part of the family. I’m thinking soon I’m going to be sitting in a quiet dark corner unable to do anything or support my family.

My partner had been doing some research for me and found an Optometrist in Sydney –  I live in Perth –  that specialised in dry eye. He was very caring and spent at least an hour with me each visit. After 5 visits, removing the Punctal Plugs, having IPL and LipiFlow treatment, and purchasing new reading glasses that reflect blue light, I have about $10,000 less in the bank account with no discernible difference with my eyes.

It’s now about 14 months after I saw the first Specialist.

Back to the GP. I decide to really open up about my depressive episodes, my sleepless nights and occasional suicidal thoughts. I told him I’ve tried everything I can. I told him about the apparent lack of concern and or knowledge of whatever it was I was going through. I asked if he could do some investigation to see if he could find a Specialist that was interested in working with me to find out what was happening. I said I couldn’t wait another three months to be told to try different drops. He got back to me after a week and arranged for me to see an Ophthalmologist within a week.

Third Ophthalmologist –  he did some checks, discussed what I had been through, and yes, we spoke about drops. He asked me to try some steroid drops but said to come back in 2 weeks.

The second visit he diagnosed me with Blepharospasm! I could have kissed him; I had never heard of this but it was great for someone to definitively say you have Blepharospasm, he even said he was 100% sure and he would be able to get me back on my bike and driving a car. I was overwhelmed; think I may have even walked out of the rooms with a tear in my eye (not bad for dry eye!). It was at this stage he introduced me to the support group Blepharospasm Australia – I obviously wasn’t the only one.

I’ve had the first lot of Botox injections and on about the sixth day I announced to my family, friends and colleagues ‘I CAN SEE!’.  Unfortunately, it only lasted about four weeks. I have managed to ride my bike 700kms in a week, raising money for youth suicide and depression. I am also able to drive my car but only for about four to five weeks after the treatment takes effect. I’m advised It takes a while to get the dosage right so I was hopeful I would eventually get there.

Recently I was told I also have another issue, which is also difficult to treat – Apraxia of eye lid opening. I’m still trying to work through that with my new Ophthalmologist, so back to the drawing board with the knowledge I do get some respite. I now have an interested Specialist willing to work through this with me and the knowledge there is a support group -Blepharospasm Australia, with dedicated people assisting those diagnosed with the condition and actively trying to get the message out to as many medical practitioners as possible so others don’t go through the same delays in diagnosis.

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