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I am now 35 and was diagnosed with BIH when I was just 2...

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Guest
Guest

I am now 35 and was diagnosed with BIH when I was just 22. I suffered headaches and vomiting for several months. Sometimes I was sick 35 times in a day. The pain was like nothing I have ever experienced. My GP treated me repeatedly for migraine to the point where I was given ergotamine. I was admitted to hospital and sent home again after they gave me a CT scan to check for a brain tumour. After developing double vision, I was admitted again. I had a low LP figure, less than 14 I seem to remember, which delayed diagnosis. Also I was of a normal weight. I had gross papillodoema and most of the time I couldn't see. After a stay of 5 weeks having various tests and LP's the consultant said I either have an illness so rare that they would name it after me or BIH although I wasn't presenting with several of the usual symptoms as the LP readings remained low, the LP's made no difference to the headaches and I was of a normal weight. They said that they could operate to fit a ventricular perinteum shunt but they couldn't say if it would work as my LP readings were low and basically the shunt works like a permanent LP. I had no other option as I couldn't live my life while suffering so much pain. The operation was performed at QMC and when I woke up, my headaches had gone. It was incredible. I rarely get headaches now. The only down side has been that I had to have a general anaesthetic and a caesarean when my daughter was born 4 years ago as they were worried that the pressure may rise again. This site is fantastic. After I was diagnosed they put a lady in touch with me about 2 years later as there was very little support and information available. One thing that did help was that I slept propped up on pillows as then you don't have the change in pressure. I have been told that I am not allowed to take anything hormonal including the pill and HRT. I would like to know if anyone else has been told the same. I hope that anyone suffering with this condition manages to have successful treatment like I did. I feel for you.

[i:21d794cd49]This message was automatically imported from the original Patient Experience[/i:21d794cd49]

0 likes, 5 replies

5 Replies

  • Guest
    Guest

    Posted

    hi

    [i:8039372da6]This message was automatically imported from the original Patient Experience[/i:8039372da6]

  • ninny
    ninny

    Posted

    Hello,

    I'm Lesley, I'm 37 and was diagnosed with BIH in 2004.Unlike yourself, I was overweight. I tried to lose some weight but it didn't make much difference to my horrible symptoms. My first LP showed that I had a pressure of 41. After a series of different meds and repeated lumbar punctures, they inserted a VP shunt. Things are so much better now. Some headaches, but that's because I've also been diagnosed with cronic migraine.

    Anyway, I'm just wondering if yourself or anybody else has experienced acting really 'dozy' I am doing silly things all of the time, misinterprating what people are saying, people sound like they are spaeking a foreign language sometimes! It must be very frustrating for them! I think it must be the BIH or the meds I'm taking. Gabapentin, Epilim Chrono, citalopram and pamipexole.

    Can you relate to any of this? I found your story very interesting.

    Thank you, love Lesley

  • lcampbell
    lcampbell

    Posted

    ive had BIH for 3 1/2 years and have just had my 2nd LP shunt fitted this year, at first i was told that i couldnt be on any birth control but after a discussion with my neurologist he suggested i try the implant and had it fitted in may and have been fine since so maybe that is an option u could try, its worked for me, hope it does 4 u 2.
  • Guest
    Guest

    Posted

    hi im sorry 2 hear that you have had such a terrible time, i also had the same symtoms as you wen i was told i had bih at only 11, i was also of a normal weight and had double vision, extermly painful headaches, vomiting and a also fainted frequently. i am now 18 and it took me years to slowly recover from bih and i also still have the danger of it returning at any stage. I had 10 lumber puntuchers and the doctors highly recomended a shunt but i was advised by one doctor to hold of and continue with the lumber puntuchers as i was so young they hoped i would grow out of it with out a shunt. eventully i did. and now im getting back on track after years of these terrible symptoms of bih. I was also told to stay away from hormones and also vit a. This caused problems for me growing up as i suffered from cronic period pains and i was not able to be treated by any hormone. Im glad to here you are no longer in pain as i no how you feel, best of luck.
  • Guest
    Guest

    Posted

    I'm sorry to hear about the pain and symptoms caused by BIH. I'm 32 and was diagnosed with BIH 2 years ago. I had terrible migranes, double vision, awful dizzy spells and whooshing noises. It was a horrible time in my life epecially not knowing what the problem was and fearing the worst. It wasn't helpful that the doctors didn't know much about BIH either. I was overweight by about 2 stone and had recently gained a another stone which might have triggered the condition. I had 1 lumbar puncture plus the CT scan.. After losing a stone and a half my doctor said i'd cured myself as the discs at the back of my eyes were completely flat. This happened within 4 months of diagnosis. 2 years on, my eyes are still fine but I still get the whoosh whoosh noises in my head when I lean forward and teardrops of light sometimes in my eyes. I feel much better now but wonder if the symptoms will ever go away. I'm hoping to start a family soon but am concerned about the pressure of labour and whether that would trigger a relapse.
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