recently diagnosed with iih, how has it affected others' day to day?

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i was just diagnosed with iih and am trying to understand what this means for me long term. my pcp and the neurologist i met with when i was at the ER to complete an mri and spinal tap made it seem like if i start my treatment (diamox 500 mgs 2x/day and weight loss) that everything will be okay. however, i'm worried that it's not that simple and they're making it seem easy breezy because they aren't well versed in the disorder...

i had been experiencing symptoms for maybe a year more or less (temporary blindness in both eyes, blurry vision, dizziness and difficulty standing up straight, headaches that woke me up in the middle of the night) and never even questioned it until i went to a routine eye exam two weeks ago and my optometrist saw the acute swelling in my eyes. he seemed freaked out and urged me to see an ophthalmologist ASAP, i went the next week and after doing all the tests and imaging of my eyes even the ophthalmologist urged me to go to the ER right after where i was admitted for additional tests and the LP.

my opening pressure was 53 cmH2o which is... really high. closing pressure was at 15 cm H2O, and i feel okay now but am now experiencing neck and shoulder pains and ringing in the ears, shortness of breath which might be due to meds. i'm just wondering if things seemed to get better for people after having a case like this and going on treatment or if things came back after a while, and how it affected your daily routine (work, school, etc).

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    I have been told when the original symptoms return, especially neck pain, we need to be seen again. maybe another puncture &/or med adjustment. My 15 yr old was diagnosed 3 months ago. opening pressure 42. enlarged blind spots both eyes. she is on Acetazolamide 2000 MG a day.

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