My Story

In 1987, aged 39, I first became aware of some strange pains at the back of my eyes, and over the next three years those pains would get increasingly stronger and pull on my eyes, resulting in episodes of double vision and dizziness. At first I put it down to too much VDU usage, and being a bank clerk at the time, there was little I could do about it, so I just suffered in silence.

In 1990 I woke in the night with such great pain in my eyes it was impossible for me to close them. When I tried to get out of bed a very severe headache started which was made worse by any movement of the head. As I had spent a lot of time in the garden the previous day I thought I may have contracted an infection. I used some eye wash for several days and waited for them to get better.

However, although the pain improved somewhat, the headaches went on, and vertigo and nausea set in. The episodes of double vision increased and I noticed that when I looked at print it had white lines across it, obscuring some of the letters . Reading was therefore becoming more and more difficult. On top of this, I was experiencing balance problems, and often landed on the floor. I soon got a reputation for being 'just plain clumsy'.


I knew something was going wrong, and spent the next two years going to opticians who would test my eyes, change my glasses, or put it down to migraine, stress or just pure imagination. In 1991 my GP put me off work for six weeks with vertigo, and despite me complaining of eye problems and headaches, made no further tests to see what was causing it.

By this time I thought I was going out of my mind and began to believe that, yes, I must be imagining it. I said no more about it, frightened of being labelled a 'neurotic' or 'hypochondriac'.


From September 1991 to April 1992 I started to get episodes of total loss of vision, lasting only for a few minutes, but very frightening. They were particularly prominent first thing in the morning when I awoke. All the other symptoms began to worsen as well.

I was forced into action one morning at work when I lost my vision and a customer shouted at me because I had keyed his details wrongly into the computer. This finally bought the tears forth, and I totally broke down.


After this my boss made me go straight to his optician who sent me onto my GP with a letter. He sent me on, once more, to the eye casualty of a local hospital. After lots of tests I was eventually transferred to another hospitals neurology ward, as I was in very great danger of losing my sight. At this point, I was gently told that I may have a brain tumour.

This was probably the most frightening time of my life. Initially, I just kept thinking how stupid I had been for letting all this go on for so long, without asking for a second opinion. Then the anger with the opticians and my GP set in. What right had they to write all this off to stress, was a question I kept asking myself.

On the neurology ward more eye tests were taken, a CT scan performed, and I was given a lumbar puncture. By that evening I was reassured that I did not have a brain tumour, but that I had a rare illness called Benign Intracranial Hypertension. I was to be kept in hospital for three weeks, given a series of lumbar punctures, and started on medication.