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• I believe I am dealing with IIH since my #2 moderna covid vaccine in June. Done lots of tests but have to see a neurologist next. It never goes away and when the pressure is bad is debilitating.

• i’ve seen multiple doctors, and been told i have all the symptoms with a larger blind spot which i was told cause be caused by pressure, then completely saw a different doctor 2 days ago and was told it was anxiety??? like excuse me i’m in agony most of the time.

• Has anyone else had a hard time getting diagnosed with IIH. I have had two different doctors tell me they think I have it because of my symptoms but I still haven’t been able to get the lumbar puncture done because the hospital won’t call me back! I don’t know what to do!! I have been battling symptoms for 3 months now and just recently my vision has started darkening but I still can’t get the lumbar puncture schedule! I don’t know what to do at this point!

• Thank you for this info

• Has anyone who had double vision because of IIH and taken Acetazolamide (Diamox) and can tell me when they noticed improvement?

  I’ve only been taking them for a few days but my double vision isn’t getting better (maybe even worse?) and it’s really stressing me out. I really fear going blind :(

• As atrophy occurs sometimes from a swollen optic nerve, how do you view this when a patient already has atrophy? Specifically... my extremely rare history. I had bilateral RB was treatments with 23 radiation treatments. Left eye was also enucleated. I am constantly told that I can be lumped in with the number of patients with IIH without optic nerve swelling. I have had many LPs with OP of about 25-36. Not very high, but enough that the pressure(not migraines) disrupts daily life. More to this, but with my history I am a person that loves science. My retina specialist and prior pediatric ophthalmologist believe that with an atrophy that my nerve can’t swell. I personally know that the peripheral test isn’t good as I have adapted to having one eye and deep set eye sockets that my results are average but true reality being that I rely heavily on peripheral vision due to the atrophy and vision loss in my central vision. Lol. A subject I can go in about. Just curious about your views and/or experience. :)

• I recently got diagnosed with this. I gained weight once I started taking meds. Thoughts?

• Has anyone been on topirmate and diamox at the same time??? My
  Pharmacist told to not take both together but my doctor is telling me to. Any thoughts?

• Does anyone have bradycardia with iih????

• You can be cured if u lose weight!! Biggest load of bull I’ve ever heard! I lost 2 stone and my symptoms worsened!