Idiopathic intracranial hypotension

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Smile1996
Smile1996 Online Community Member Posts: 3 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi. I was diagnosed with IHH in June. It got a little better with acetazolamide being prescribed but the symptoms are worsening and I'm struggling to cope ? how does everyone who have it manage? I feel really lost 

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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    Hello @Smile1996 and welcome to our online community.  I'm glad you found us  :)

    I don't have much knowledge of IHH but I'm so sorry to hear you are finding it difficult to cope with.   If I can just ask a few questions to help us help you better - what symptoms are causing you the most problems?  Is your medical team offering regular appointments and support?  Are you a member of an IHH support group?

    The Brain Charity has a webpage that contains links to various IHH support services that you might find useful and hopefully some of our other members who have IHH will be along soon to offer personal advice.

  • janer1967
    janer1967 Online Community Member Posts: 21,922 Championing
    Hi and welcome I hope you start to feel better maybe it is a matter of trying to get the right medication and dose for you and may be a bity if trial and error, I would speak to your specialist

    I hope the info above will also be helpful for you
  • chiarieds
    chiarieds Online Community Member Posts: 17,095 Championing
    Hi @Smile1996 - & welcome to the community.  I'm sorry to read you are struggling with this. I don't have idiopathic Intracranial Hypertension, but some with my neurological problems do, so I have a little understanding.
    I would discuss your worsening problems with your GP or specialist. I don't know if this is the case, but if you are overweight, then also ask for advice in tackling that, which can often be helpful. Please let us know how you get on, thank you. :)
  • Tori_Scope
    Tori_Scope Scope Posts: 12,468 Championing
    Welcome to the community @Smile1996 :) I'm sorry to hear that you're struggling to cope.
  • Valerieco
    Valerieco Online Community Member Posts: 15 Connected
    Sorry I hope you find the right help soon stay strong
  • Smile1996
    Smile1996 Online Community Member Posts: 3 Listener
    Thank you everyone for the warm welcome. I have appointments with my neurologist and I have appointments with the opthamologists. I have a constant headache where it feels like someone's drilling into my skull, its worse when lying down because it feels like my head is lying on a brick instead of a pillow. I also have blurred vision as I have swollen optic nerves because of the pressure.

    I have issues with dizziness, nausea, confusion and wooshing sounds in my ears. My head is the worst symptom though. 

    I was advised to lose weight and i have lost 3 and a half stone. I have issues with eating so it's been incredibly hard. 

  • chiarieds
    chiarieds Online Community Member Posts: 17,095 Championing
    Hi @Smile1996 - & thank you for your kind reply. You are having a horrible time of it. If you haven't got an appointment with your specialists soon, I hope your GP may be able to help get your intracranial pressure under better control. You are doing incredibly well in helping on your part with your weight loss, so congratulations, & keep up the good work. :)
  • Smile1996
    Smile1996 Online Community Member Posts: 3 Listener
    Thank you :smile: I have multiple health conditions and mental health conditions so I don't always find it easy. I'll contact my GP if my symptoms worsen before next month which is when my neurology appointment is. 
  • chiarieds
    chiarieds Online Community Member Posts: 17,095 Championing
    edited October 2020
    Hi @Smile1996 - do please keep in touch, & let us all know how you're getting on, & chat here any time. Pleased you have a neurology appointment soon. You really are doing great with all you're contending with. Take care. :)
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Smile1996 and welcome to the community! Just wanted to check in to see how you were doing. :)

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