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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