1. Community
  2. Brain and nerves
  3. Idiopathic Intracranial Hypertension

I have had this condition for 3 years now and I'd say th...

Posted , 1 user is following.

Guest
Guest

I have had this condition for 3 years now and I'd say the constant sound in my right ear of my blood pulsing drives me mad I would love to be able to enjoy peace and quiet. The lack of support from doctors is frustrating, not knowing how long you are going to be on medication if you will eventually lose your sight not to mention the depression and the headaches there are so many things that can be wrong with you that you don't know whether it is related to B.I.H or a seperate issue. does anyone else relate to this or anything that maybe I do not know about this condition.

[i:9fbb755298]This message was automatically imported from the original Patient Experience[/i:9fbb755298]

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    My 12 year old daughter has this problem caused probably by a trial drug 'embrel' that she is taking.

    It is so frustrating when she has such bad headaches and doctors say it'is self limiting/or self righting' eventually SO WHAT how about the here and now and the pain that it is causing her. Next stop a shunt...does any one know much about these and are they successful?? She can't stop her medication so the problem will more than likly stay with her indeffinately. She becomes dizzy has trouble judging distances ie steps etc is out of school and unable to concentrate. Do you have any helpful day to day tips for dealing with all this??:roll:

    [i:07c82559cc]This message was automatically imported from the original Patient Experience[/i:07c82559cc]

  • Guest
    Guest

    Posted

    i have had this condition for 3 years now, i'm tired and frustrated, and i have tried all the medication and the doses you can have. In july 2005 i had my first (LP) lumbar shunt, it is now may 2006 and i have now had 4 shunt revisions because the shunt is blocking. it took me 5 specialists to find one that knew what he was talking about. this condition is sooooooo hard for it's sufferers to deal with let alone the friends, families, children of the sufferers. all i know is that when my shunt works it's great, i wouldn't go back to all those medications. i might be getting a (VP) shunt next just waiting to find out. just make sure that you all remember that out there somewhere there are others and you are NOT alone. :magic:

    [i:20d9795d71]This message was automatically imported from the original Patient Experience[/i:20d9795d71]

  • Guest
    Guest

    Posted

    In November of 2005 i had constant headaches even prior to the date i suffered alot with headaches and thought i was over worked and stressed. i went in to hospital and i was told i had a middle ear infection. after that i kept going back into hospital cause the pain eas intesifying each day. and still i was told nothing was wrong with me untill i suggested that i may need glasses because headaches are also caused by weak sight. so when i devoloped dubble vision i went to the eye and ear doctors and they had a look in the back of my eyes and found there was severe pressure in my eyes and i was on the verdge of loosng my sight. i went to hospital yet again and i had three lumber punctures and it was the determined that i had B.I.H. i had surgery to put a shunt in my spine and its now six months later. i spend in total 8 weeks in hospital 5 of those they had no idea what was wrong with me. im better now and hopefully stay that way ,. i sympathise with anybody going through all the tests and surgery and to let you all know there is light at the end of the tunnel it might be a long tunnel but it wont go on forever.:magic:

    [i:5ef2b45067]This message was automatically imported from the original Patient Experience[/i:5ef2b45067]

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.