My Story (part 2)

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 more than 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 in my 50's, 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.