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About Me

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Hello, my name is Jo and I am 36 years old. I was diagnosed with BIH in 1999 and I would like to share my story with you.

In 1999 I began seeing blotches in front of my eyes, it started to become more frequent over several weeks and occasionally I lost my sight completely for a few seconds.
I decided I needed my eyes tested so went to see an optician. He looked in my eyes for a few seconds, wrote on a piece of paper which he put in an envelope and told me to see my G.P. urgently. I asked him what was wrong and he said he could see swelling in my eyes and I should urge my G.P to make a consultant referral as soon as possible.

I was speechless. I was convinced I had brain tumour and was going to die. I will never forget standing in the opticians crying my eyes out , with everybody staring at me.

I made my way home and my husband took me straight to my G.P.He read the letter and looked at me as if I was just another neurotic, hysterical woman. But when he examined my eyes, his attitude changed, he became sympathetic and obviously could see something seriously wrong. By the end of the day I had my consultant appointment for the following week- with an eye specialist.

She did various tests and was convinced I had BIH.She took me to see a neurologist who was also in the Outpatients department. He started me on acetazolamide 250mgs three times a day and arranged for me to be admitted to hospital in the following two weeks for tests. Once admitted I had visual fields tests, a CT scan which was normal and then a lumbar puncture. My CSF was raised so enough was drained off to bring it down to a normal level.

I now remain stable on the acetazolamide but whenever the consultant reduces it I end back in hospital for another lumbar puncture, so I'd prefer to stay on it now.
Papilloedema is always present when I am examined but my vision does not seem to be impaired.The one thing I would like to say is that I have never suffered from headaches which the doctors find pretty strange! As you can see I have been lucky- my diagnosis and treatment were quick and the severity of my BIH is very mild compared to others I have spoken to.

I am a qualified Nurse and up until I had been diagnosed in 1999 I had never heard of BIH. I work full time as a Domiciliary Care Manager which involves driving and computer work which I can manage without problems. I hope this web site will make you understand a little more about BIH and will provide support to those of you that want it. May I emphasise again - we can not diagnose your problem - we can just talk about our experiences and be here for you.

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