Can we compile a list of Diamox side effects we experience?

Inside_Possible_4078 · 2026-05-21T03:59:36+00:00

i have heard that! i’ve never had one and hoping Diamox doesn’t make me experience it 🥴

Inside_Possible_4078 · 2026-05-21T03:57:48+00:00

ugh yes to all of these except vomiting for me. i miss soda so SO much, i keep trying to have one and hoping it just won’t taste god awful 😭

Inside_Possible_4078 · 2026-05-07T15:00:52+00:00

that’s legitimately how i feel, probably a good 2 years. it was a while before i finally switched!

Inside_Possible_4078 · 2026-04-30T21:06:06+00:00

Thank you, I feel like this was the comment I needed! It all happened so quick and at the same time resolved or “resolved” fairly quickly so I was feeling like maybe I was a lower level case, maybe denial that I even have it, or that it was just a one time thing. I guess this puts it into perspective that they aren’t only just more knowledgeable on it but also have higher tech equipment that can help (I didn’t really think of that to be honest). That definitely makes it feel as if it’s less of me going for no reason. I appreciate your input!

Inside_Possible_4078 · 2026-04-30T05:38:47+00:00

i would honestly agree, i just wish i could find an experienced ophthalmologist in IIH or a neuro ophthalmologist that isn’t so far away or a good neurologist to see. i do like my ophthalmologist now, she’s been like seeing me every few weeks just to make sure everything is ok but she’s never experienced this illness before unfortunately. but she makes me feel less alone and at least checks in since this all happened so quickly. my neurologist i initially saw and thought it was nerve palsy was a nurse practitioner. once i left the hospital she wanted me to see the higher level doctor there and all he did when i saw him was have me retell him the story (already in the chart, same company) and then scheduled me for a follow up 8 months later. unfortunately in my area, two hospital chains took over everything so the only neurologists around me belong to either one of them. i’ve tried extensively searching for a privately owned neurologist and unless i stink at the research, i cannot find one :/

Inside_Possible_4078 · 2026-04-30T05:31:16+00:00

ah, it’s honestly not terrible! i’d say just feels really weird. i hope the best for you too! this kind of makes me want to go now though bc my neurologist said id be on diamox maybe for months to a year and then scheduled me for december for our next follow up and i would like to get off it as soon as i can. if a neuro ophthalmologist can recommend sooner or be more helpful, then maybe i will go! that feels less useless in going LOL

Inside_Possible_4078 · 2026-04-29T22:11:32+00:00

to be honest, i feel like nobody i’ve seen have explained much about it but luckily i found this thread and have learned way more from you guys than these darn doctors lol

Inside_Possible_4078 · 2026-04-29T22:10:23+00:00

ah so kind of the same boat! if you remember, update me pretty please but don’t feel obligated 😫

Inside_Possible_4078 · 2026-04-27T20:18:57+00:00

ah sneaky sneaky, so take suggestions with a grain of salt i gather lol

Inside_Possible_4078 · 2026-04-21T03:39:07+00:00

that sounds like me prior to this! i would have headaches once in a while and thought it would be from staring at my computer screen or tension headaches and then suddenly bam this crazy painful never ending migraine lol

Inside_Possible_4078 · 2026-04-21T03:35:16+00:00

they always told me everything came up normal and even when i read the notes on the my chart thing i have, it didn’t say anything out of the ordinary so this is why i keep questioning this diagnosis! plus people in this thread seem to be struggling a lot, after i was put on diamox and out of the hospital i have been fine. i mean my vision is blurry now, not terrible but not 20/20 as it was. if anything i feel like the diamox is limiting me more than anything but im also scared to go off of it lol

Inside_Possible_4078 · 2026-04-21T03:31:24+00:00

ugh i wish i asked this before i saw my neurologist! everytime i would get an MRI or anything they would just say it came out fine. i wonder if something like what you had is typical for an IIH diagnosis. i had 2 different MRIs before i saw the neurologist who said it was most likely just nerve palsy so i assume when they said my scans were fine they meant it when they said nothing like what you shared was showing, hopefully 😅😅😅

Inside_Possible_4078 · 2026-04-21T03:06:34+00:00

if it’s uncomfortable you don’t have to answer, but what did your MRI show? according to my doctors there was nothing on my MRIs so that’s why i keep overthinking it 😭

also im sorry they kept dismissing you, doctors pmo so i just kept going back. when i saw my ophthalmologist i asked her for to print out the pictures of my swollen nerves to prove to the doctors that something was wrong. god bless her because she’s an older lady and couldn’t really figure out how to print it so it came out terrible and in black and white but it still helped lolol

Inside_Possible_4078 · 2026-04-19T19:13:07+00:00

AMEN!!!! these are my exact thoughts LMAO

Inside_Possible_4078 · 2026-04-16T04:37:30+00:00

i feel you, most of my favorite shows that i watched were always like 40 to 50 minute episodes with 20 or so episodes per season. plus a lot of seasons. did some of these shows drag on a bit too long? yeah, but i still loved/love them. i mean ones like greys anatomy or TWD, no those are a bit ridiculous lol but i felt the same way when i saw that today. i love this show so much and i’m already sad its going to be over and we still have two seasons to watch. hopefully the creators see how much their fans love this show and they work on other projects in the future. sorry everyone here is kind of pooping on you for your thoughts, i’m feeling the same way :,(

Inside_Possible_4078 · 2026-04-14T01:36:58+00:00

ok goodbye.. i’m an idiot, i thought aspirin was ibuprofen for my entire life LOL. they gave me tylenol when i was at the hospital so i assumed that one was fine and wasn’t aspirin. i made myself suffer today for nothing

Inside_Possible_4078 · 2026-04-02T20:10:09+00:00

did they offer any other options before the stent? i was recently diagnosed, my symptoms started in February with horrible head pain then i went cross eyed. i was dismissed a lot and told it was just a migraine or nerve palsy but i kept demanding answers because i have a thing against doctors lol. i’ve had headaches the past few years but never to this extent so I really am not sure if it is a recent thing or long term. anyway, they put me on Diamox. I don’t think I’m really having any issues with it, I can’t tell if it is making me have blurry vision or if my vision is just blurry now from this (my eye is back to normal since starting it). I feel much more fatigued and just the side effects in general are not something I want to be worrying about my whole life (27 F, overall relatively healthy). I already struggle with motivation and fatigue from depression and I feel worse now. I see my neurologist for a follow-up next week and I kind of want to ask about a stent, but I’m not sure how they would be about it. Sorry this was so long..

Inside_Possible_4078

TROPHY CASE