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Idiopathic intracranial hypotension

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
Replies
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.
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I hope the info above will also be helpful for you
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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.
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