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Is Acetazolamide for long term use? (idiopathic Intracranial Hypertension)

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Sproesser
Sproesser

My Neurologist put my on acetazolamide 3 years ago to treat my IIH, which I've been on since. It has been working, but today I met an eye specialist who told me it's supposed to be used to bring your spinal fluid pressure down, but then to be taken off the medication. She said it can be very dangerous to be left on the medication long term. She advised I talk to my primary care doctor about slowly coming off it. I have read up a bunch about it, and never found anything saying it's for temporary use. The Neurologist who put me on it in the first place was a terrible doctor who I no longer see, and he never said anything about it being temporary. Has anyone been through this? do you know for sure if Acetazolamide is meant to be used short or long term to treat Idiopathic Intracranial hypertension?  Thanks!!

0 likes, 3 replies

3 Replies

  • cj22657
    cj22657 Sproesser

    Posted

    Great question, I'd also like to know the answer to this!  ...and has anyone successfully gotten off of it...and if so, after what period of time and how?  

  • Christiwarrior
    Christiwarrior Sproesser

    Posted

    IIH is a chronic, recurrent, or acute condition. So it can be a one time thing, it can come and go, or it can be lifelong.  So there are people who have to take it indefinitely. The best thing to do is talk to your doctor and discuss your concerns. The doctor and you can always discuss the risks and benefits of medication use or future surgeries.

    To me personally I HATE taking medication but it's something I have to do to be able to maintain my job, lifestyle, and most importantly to my eyesight. I would recommend weight loss if you're on the obesity spectrum, like myself, it can help. 

  • sam41483
    sam41483 Sproesser

    Posted

    Hi Sproessor and others,

    Im from Aus and dx in August last year. My neuro wants me to drop from diamox asap once safe to do so. He never mentioned it NOT being a longterm med, so could be bc of side effects to me as I am on 2000mg daily and house bound unable to do much.

    I hope you can chat to your Neuro to get sorted. One thing that sucks in my experience at least is Drs are very vague and cant or wont really give info on general prognosis and outcomes of clients with IIH bc it is so variable.

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