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    Old 04-10-2003, 02:08 AM   #1
    tytorian
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    Exclamation Intercranial Hypertension

    Help!
    My daughter has been ill for sometime she is just 10 and it seems an on going battle to find out whats wrong with her - going from one thing to another saying she will be ok now.
    Her diagnosis at present is Asthma/IgG subclass deficiency(immune system)/Severe Migraine/nervous tummy/Growth Hormone defficient. Obviously she has medication for all of this and injections of growth hormone.
    Now the doctors have given her a lumber puncture and her BIH is high 32?. This could be a side effect of the growth hormone but maybe not. I really do not understand after all I am not a doctor they have reduced her dose of growth hormone and at present are hoping this does the trick. It is early days but I am having trouble finding out about this new condition so its Benign Intercranial Hypertension and all i seem to be able to find out is that the odds were 1 in 100,000 chance of it being this and how it normally occurs in obese women aged 20 - 40. Obviously none of that helps me at all, My daughter is slim and 10 years old.
    Can any one help?
    I have so many questions but when I see docters we are busy treating her and I don't want her to hear this.


    [This message has been edited by tytorian (edited 04-12-2003).]

    [This message has been edited by tytorian (edited 04-14-2003).]

     
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    Old 09-18-2003, 02:13 PM   #2
    head1
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    hi guys,calm down,i have bih.bih has three names of pseudotumor cerebri,benign intracranial hypertension or idiopathic intracranial hypertension,there is alot of info on the net if you search under any of these names or papilledema(swelling of the optic nerves)which usually goes with bih. i and a few others have messages on the brain and nervous system forum which may help but if not try this link [url="http://www.mjmoore.co.uk"]www.mjmoore.co.uk[/url]
    my lp pressure was alot higher than your daughters and im on diamox now awaiting a shunt as mine isnt being kept under control.I am not obese either,but the drs have done no research on bih as its rare,all the info anyone knows is that for some reason the brain over produces or under absorbs the cerebral spinal fluid that surrounds your brain,mine is primary but from the sounds of it your daughters is secondry as hormones are a big no no to bih sufferers,so id sugest that u have that one out with your opthalmologist neurologist and get your daughter on diamox asap before the pressure rises again. hope this has helped if not just ask,hope u get sorted soon,im an adult and i find it hard to cope with so i cant imagine how ill and alone your daughter feels.

     
    Old 09-20-2003, 11:31 AM   #3
    head1
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    hi traceysworld,yeah i guzzle drinks down like there is no tomorrow and am always thirtsy but i was also told it was potassium deficiency aswell and am now a banana scoffer which hasnt really helped that much.i have lowered my dose too but it hasnt changed much,still feel lowsy all the time and it will soon b lowered again but then the pressure will rise.no win situation.i dont fancy a shunt but my options are getting limited now and cant afford to lose any more sight as mine was damaged permanent too.do u have mega bad pins and needles from diamox??anyway hope ya pressure stays down and good luck.

     
    Old 10-25-2003, 11:59 AM   #4
    tytorian
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    Thanks Guys,
    I have not been on the site to look recently as no answers had been posted in the first few months. My daughter is holding her own at the moment and on acetazolomide 250mg 3 X daily then to balance this she takes bicarbs to the value of 3000mg. As she is still having absences we are off for an EEG on friday the 31st Oct nice Halloween treat! Thanks again
    Carole

     
    Old 10-25-2003, 05:28 PM   #5
    angelafdaviesrn
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    Hi,
    My name is Angela and I was recently diagnosed with BIH. I am a Registered Nurse. Up until 8 weeks ago, I had never heard of such a horrible thing. Over the last 8 weeks this problem has mostly destroyed my life. I lost part of my visual fields, but that has come back with Diamox. I have been forced to take a medical leave of absence from my work. I have been an emergency room nurse for the last 7 years. I have problems walking, my balance is very poor. I have horrible headaches, which no medication control. I feel like my life is spiralling down the toilet and I am powerless to reach in and pull it out.
    I saw a neurologist(with whom I have worked for the last 9 years) basically, he told me to take diamox, lose 25 pounds, quit taking birth control pills and that this problem would all go away.
    Now weeks later, I continue to have uncontrolled headaches. The diamox has seemed to keep my ICP under control, but I am not much closer to being able to return to work.
    Does anyone have any suggestions? I feel horrible. It is all I can do to function for a few hours each day. There aren't any nursing jobs that I can do for the extended hours the job requires.
    Please help! I don't know what else to do. Where should I go from here?
    Thanks,
    Angela Davies RN

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    Old 10-25-2003, 05:32 PM   #6
    angelafdaviesrn
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    Hi,
    My name is Angela and I was recently diagnosed with BIH. I am a Registered Nurse. Up until 8 weeks ago, I had never heard of such a horrible thing. Over the last 8 weeks this problem has mostly destroyed my life. I lost part of my visual fields, but that has come back with Diamox. I have been forced to take a medical leave of absence from my work. I have been an emergency room nurse for the last 7 years. I have problems walking, my balance is very poor. I have horrible headaches, which no medication control. I feel like my life is spiralling down the toilet and I am powerless to reach in and pull it out.
    I saw a neurologist(with whom I have worked for the last 9 years) basically, he told me to take diamox, lose 25 pounds, quit taking birth control pills and that this problem would all go away.
    Now weeks later, I continue to have uncontrolled headaches. The diamox has seemed to keep my ICP under control, but I am not much closer to being able to return to work.
    Does anyone have any suggestions? I feel horrible. It is all I can do to function for a few hours each day. There aren't any nursing jobs that I can do for the extended hours the job requires.
    Please help! I don't know what else to do. Where should I go from here?
    Thanks,
    Angela Davies RN

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    Old 10-30-2003, 01:30 PM   #7
    head1
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    hi angela,im sorry to hear u r having such a tuff time at the mo,i have had bih for 2 years now and have been off work and on the sick for a year and a half now.i am on diamox but am still suffereing and also lost alot of sight,i am getting a vp shunt next.i have some peices on brain and nervous system forum under pseudotumor cerebri which u may find helpful.i found some support forums over the net which i have found invaluable as u will often feel so alone with this rare silent disease.good luck and i hope things settle down soon.

     
    Old 10-30-2003, 01:52 PM   #8
    DJblod
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    re "stereotyping", BIH is commoner in obese females - nearly all the patients I have seen have been. It is pattern recognition not sterotyping

     
    Old 11-18-2003, 08:02 PM   #9
    Peggy Ann
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    pseudotumor cerebri/intracranial hypertension

    Hi Ang,
    I'm sorry to hear you were diagnosed with this horrible disease. I've had this disease now for 13-1/2 yrs. I am also an RN and it has placed tremendous hardship in working. I had ONSF done to restore and preserve my vision and also had a shunt place which has now failed and I'm looking at possible shunt revision as my opening lp pressure was high again and I'm feeling all the symptoms of this nasty disease.

    You should check out this site: [url][email protected][/url]
    On the left hand side of the page there will be a link to click on pseudotumor cerebri and that should take you to the home page where you can sign on. It is full of information and support. Check it out if you have not done so already.

    Awesome website, check it out.

    Peg

     
    Old 12-01-2003, 01:32 PM   #10
    head1
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    Angry Re: Intercranial Hypertension

    djblob,
    weight is NOT a proven fact as no research has gone into this disease.I am not OBESE and im sure that the many children sufferers wont be either,in fact i know a few skinny and male sufferers too.some sufferers have eevn lost weight and had no relief through it.
    any Weight gain is normally after the illness has dibilitated the sufferer so much that they cannot function a normal life anymore and this is no illness to be sneered at!!!!!!

     
    Old 06-04-2004, 04:47 PM   #11
    buffybo
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    Re: Intercranial Hypertension

    Thanks for your report. I am a new sufferer and I have found great relief in what you have to say. I can now see light at *** end ** *** tunnel.

     
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