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 hospital's 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.
All I was told at this time was I had a build up of spinal fluid over my brain very much like hydrocephalus in babies. The medication and lumbar punctures were to decrease the pressure. There was a lot of concern over the eyes and losing my sight, and this would be monitored.
There was very little knowledge at this time to what caused BIH, only that it occurred in overweight people and/or those on the birth control pill. I immediately went on a diet and lost 2 stone in six months, although I was never considered to be obese to begin with. I should also say that I had never taken the pill either.
Following the lumbar punctures, the spinal fluid decreased but there was no improvement on my eyes. I was sent to an ophthalmic consultant who operated first on my right eye, and six months later on my left. The operation was 'optic nerve fenestration', whereby the optic nerve is slit to allow the fluid to drain away.
This has left me with permanent distorted vision, but very good field (all round) vision. There is no doubt in my mind I would be blind today without these operations.
Following all this treatment I was told that the prognosis was good, and in 9 out of 10 people the condition just clears up. I am, however, in the 1 in 10 people who get BIH as a chronic condition. Since my diagnosis, I have had medication changes, and 17 lumbar punctures to reduce the spinal pressure. I have also had several scans.
It will go into remission for weeks, sometimes months or once even a year, but always seems to come back. Over the past three years I have also experienced a whooshing noise and thumping in my ears, like listening to a heartbeat. The regime for me now is diuretics and six monthly lumbar punctures, which help for a while, but do not cure. I also have a yearly MRI scan.
There has been more learnt about the condition over the years, and research continues. I am now 55, and have been told that once my hormones settle after the menopause I may see the last of BIH. I await this with some doubt.
To close I have to tell you that steroid withdrawal is now known to be a cause, one of these is Danazol, which I was taking from 1982–1985. Although this cause is of little importance to the medical profession, it was a very important piece of research to me. I needed to know what had caused this illness, even though it was discovered ten years on.
Please don't panic if you have been diagnosed recently with BIH, overall the progress is good. I am just one of the unusual ones, but I had to write my story honestly.
I am no longer employed as a bank clerk, as the duties were too taxing due to the BIH. I now work as a Social Work Assistant in a more caring environment. Paperwork is not so prominent, and I manage with a sophisticated magnifier supplied by Employment Services and my employers. I still work full time, my employers giving me time off for hospital appointments and in-patient stays.
I do hope the last paragraph will be an encouragement to other sufferers.
Thank you for reading my story, I hope it has been of some help. It has certainly helped me feel a little better by writing it, and will perhaps help you to know you are not alone.
'Denise'
Reproduced with permission: www.mjmoore.co.uk/bih/