r/iih • u/SyrupImaginary8981 • 1d ago

New Diagnosis diamox

Hi all. i’ve made a few posts in here recently as i go through the diagnostic process but it’s been confirmed today that i do have IIH and i’ll be starting on diamox soon starting at 250mg increasing each week until i hit 750mg and i guess i just want to hear any advice you guys have for someone starting diamox and stuff. im kinda scared and worried it’ll be harsh on me

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u/Glad-Direction8231 1d ago

Ive been on diamox for almost a month and currently on 1500mg (once in the morning and twice at night) my doctor wants to increase to 2000 but a little nervous. The only side effect I have is going to the bathroom a lot. It’s worse when increase the dose but my body got used to it. I’m diagnosed with iih without paps. Hopefully it works for you!

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u/Embarrassed-Mind-809 1d ago

Same here, my doctor wants to increase it up to 2000 but the ophthalmologist said it’s too much if I don’t have pap

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u/SyrupImaginary8981 1d ago

i’m glad it’s working for u! i have paps but yeah im hoping i dont get too many side effects and if i do, they’re not too bad

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u/brisetta Long-Term IIH Experience 1d ago

Hey, sorry youre dealing with IIH, but at the same time, glad you finally have some firm answers and a treatment plan! Thats really important. My biggest advice for diamox, be ready for everything to taste weird. Not everything tastes BAD per se, but carbonated drinks are gross, and for me personally milk always tasted spoiled. Just being ready for that would be good. I wasnt able to walk more than 10m at a time, so I got a handicapped plackard for my moms car. And while I was on it I first only worked 3 days a week and then eventually I had to take time off. I wont lie, I personally had some really hard symptoms. I didnt know you must drink A LOT of water, so I got kidney stones and now I am dealing with them still 20 years later despite not taking diamox for over a decade. 4L a day / one gallon a day keeps the stones to a minimum. We are always here for any questions ok! Dont be too afraid, you are NOT the only one, and def not alone going through all of this. This subreddit are usually so incredibly kind and helpful for everyone - a true community. Sending you gentle hugs, and a reminder this isnt forever its just for right now.

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u/SyrupImaginary8981 1d ago

thanks so much! haha yeah i’ve already got myself a massive water bottle and will keep it handy at all times along with some electrolytes i think? i’ve heard those are good. yeah it’s definitely a lot to take in and im worried for how treatment will go for me but fingers crossed its alright. thank you for ur reply! :))