r/iih

Hello all! So last week I had a cerebral angio/venogram. First I will say I never want one again unless they can sedate me but if you know, you know.

My neurosurgeon said he wanted to do two stents. Or I could skip straight to a shunt because he wasn’t sure if stenting would help. I had him explain everything.

After careful thought after talking with family, I decided to skip stenting. This has been a long road for me and the past couple of months have been absolute hell. Not to mention I can’t take off for two surgeries and then still probably needing a shunt after.

I want to know experiences, good and bad. I want to know things you had wished to have expected. I’m scared out of my mind honestly, about the whole thing. Knowing what to expect, any and all possibilities will put me more at ease. I know this is something I have to do anyway, no choice. I just know that knowing what to expect fully, from first hand experiences will make me feel a lot better.

Thank you for reading and/or responding! Hope everyone has a great day!

since my doctors, (and from reading many of yours too) don’t seem to inform those of us on Diamox of the many many side effects, can we all make a list of the side effects we’ve experienced in this thread?

i apologize in advance if this has been done before. i’ve been on it since march and i feel like i have a new side effect going on every few weeks and i’ll google and i land right back into this reddit page lol. sometimes just reading through the threads people mention side effects that i had no idea about. i saw someone mention that it makes your saliva acidic?? which i guess leads me into my most recent one. i’ve been having such bad acid reflux when i go to bed lately. i take two 250mg pills 3 times a day. my doctor told me i should just take 2 in the morning and 4 at night to make it easier which at first i was happy about. less remembering or missing doses for me, but i guess ill be changing back to spacing it throughout the day.

another thing that keeps happening is i’ll feel like my upper lip is like twitching or heavy or numb. i cant explain the feeling. the first time it happened i honestly thought i was having a stroke or something. after a few instances (it doesn’t happen all that often fortunately) i think its due to low levels of potassium for me. at least i hope lol 😮‍💨

Has anyone developed an eating disorder from taking Diamox (acetazolamide)? The medication helps tremendously with keeping fluid build up down, but disturbs my GI tract so bad that I don't want to eat at all

Hello Everybody I was diagnosed with IIH 2 years ago and was deeply wondering how is everyone doing mentally? this condition can be a lot and is terrible but i love hearing people stories and advice.

Annnnd I’ve run out of Diamox.

No one told me it would take this long to get into a specialist. I’ve tried calling everyone I could think of to get a refill. The ER I was diagnosed at, Transitional Care, Urgent Care, My neuro-ophthalmologist that I even have yet to see, and I just get a no.

I at least have an appointment with a PCP next week. I also have an appointment with my regular Ophthalmologist.

I may seem dumb and inexperienced that’s because I am. I’ve never had to deal with a chronic illness I have always been fortunate up until this point.

I just feel irritated and worried that the pressure will build up quickly without Diamox for a week.

hello everyone,

i’ve (30F) never posted on reddit before so please forgive me, but i want to see if anyone is in a similar position or has any advice. i do have a follow up appt with my hematologist next week and am waiting on some results but still wanted to make a post while i wait.

some background for context- i have PCOS (now PMOS), was diagnosed in 2020 after having symptoms my whole life, but no doctor ever told me an irregular period wasn’t normal so i never knew. finally in 2020, i lost my period for at least six months which made me go get checked out, and they told me i had pcos and put me on sprintec birth control which was the beginning of the end for me…it gave me insane cystic acne which i’ve never recovered from, and i was only on it for three months. i gained a lot of weight and eventually went on accutane when i really shouldn’t have about two years ago. i had a SEVERE neurological reaction to the accutane and was told it likely gave me intracranial hypertension when it gave me what i can only describe as the most intense migraine i could ever imagine, and i’ve never fully recovered. i have had a pretty constant headache almost every day, all day, for almost two years after being on it, and i only took it for one month. i was hospitalized and had several scans and a lumbar puncture and have tried diamox and topomax to lower my pressure but nothing really helped my pain much besides possibly losing weight on zepbpund for a while, but i think that’s bc it lowers inflammation maybe.

also to note- i do believe some of my issues are related to long covid, my first known infection was symptomatic in june 2023 and second was asymptomatic in july 2024, right before i started accutane. covid has been proven to cause intracranial hypertension as well as menstrual issues. i was living in new york at the start of the pandemic and was briefly sick in january or february 2020 which was around when i lost my period, so it’s possible that was actually my first infection which caused me to lose my period for all those months, meaning following my third infection is when my symptoms really took off). i also unfortunately contracted mono around the same time in summer 2024 but didn’t find out until september due to its very long incubation period, so essentially i had two viruses wreaking havoc in my system before i then made it worse by taking a neurotoxic medication for acne.

throughout the past few years of seeing specialists, no doctor EVER suggested i test my iron and ferritin. i kept seeing ppl talk about it on tiktok so i finally asked my GP a couple weeks ago to test it. my ferritin came back at 7 ng/mL, my total iron at 65, saturation at 16% and binding capacity at 415. they also tested my vitamin d which came back insufficient at 28. as soon as i saw the results online i called several hematologists to find one with availability to make an appt asap and then called my GP to have them send my results over. my GP only wrote a note to start taking iron and vitamin d pills…one week later i got in to see a hematologist who said that it was very odd that i was clearly iron deficient but my hemoglobin, hematocrit and red blood cells were too high, especially as my periods are short and very light due to pcos, so she wanted to test them again and ordered a few genetic marker tests like jak2 among others to rule some things out. she diagnosed me with iron deficiency and secondary polycythemia. she also tested b12, which was on the lower end at 368. i have my follow up with her next week, but both my hemoglobin and hematocrit came down at the retest, though my red blood cells only a small amount, so im wondering if dehydration caused them to raise before the test with my GP bc it was early in the morning and i don’t think i’d had much water.

i wasn’t expecting my ferritin to be in the gutter when i asked for this to be tested, and assumed all my symptoms were bc of pcos, intracranial hypertension from my accutane complications, or other possible issues due to my past covid infections, but now i’m wondering if this is a key factor in some of my symptoms like extreme fatigue, constant one sided headache, burning and scalloped tongue, major hair loss, red band at end of weak and brittle nails, white spots on nails, heat hives and white spots on my skin after a hot shower (newish symptom), racing heart/palpitations, breathlessness, anxiety, brain fog, chest pain, eye pain/droopy eyelid, among others.

i didn’t intend on writing a novel here, but if anyone has any insight on a similar situation or experience, any advice they could give that may help, i would greatly appreciate it. the past two years have been hell for me and my mental health has taken some dark turns. thank you for reading and for listening

edit: cbc test at the time my iron and ferritin were tested were hgb: 14.7, hct: 45.7, rbc: 5.1 and a week later for hematologists test they were hgb: 12.8, hct: 38.6, rbc: 4.41. my mpv went down to 9.1 at the second test and is marked low and my mchc is at the low cutoff at 33.2

So I was all prepped and in the pre surgery room gown and everything when the anaesthetist suddenly read about the iih and cavernoma (this information was in my notes from the moment I went to my surgeon). They called my neurologist and neuro surgeon and came to the conclusion that a laparoscopic hysterectomy would put too much pressure on my brain. I’m so frustrated that they didn’t bother to follow this up earlier lucky the anaesthetist was on the ball otherwise who knows what would have happened in surgery🤦🏻‍♀️.

I’m also annoyed that my neurologist has not tested my pressure since I started treatment nearly a year ago. It’s like they just assume that what they’re doing is working. Is this normal for iih or am I expecting too much?

Hi everyone, last week at my pcp visit and countless doctors appointments later, he suspects and is treating me for IIH. Am put on ACETAZOLAMIDE. Now for some years I’ve been struggling with lots related systems. But my doctor told me it’s low blood pressure and vagus nerve issues. Because the symptoms I was experiencing were similar. Normal CT scans, but migraines daily, vomiting, balance issues, feel pressure in my head, brain fog. Fast forward just have birth in January with my first pregnancy and child ever. I feel like it amplified my symptoms. I also am struggling with some depression and anxiety (don’t know if that correlates at all). New to this whole thing. Nervous, overwhelmed. Anyone have any input? Advice? Maybe can relate? I was also told by my doctor it could be hormonal and can go away??

I’m sixteen years old and I’m a girl. It was suspected that I have this condition last week. I have all of the symptoms such as black outs, ear ringing, double vision, etc. I recently had a blackout that lasted longer than a minute. The next thing I know I’m on the floor. I think I passed out and I don’t know what to do. Should I go to the ER or just schedule an appointment?

before i got diagnosed i would lose my balance pretty easily in public and i always wondered whether something was wrong with me or not, but when i got diagnosed and put on medication i stopped losing my balance as easily

although in the mornings, even if i've been in bed for awhile, if i get up and start trying to get ready i will sometimes lose my balance and nearly fall on the floor.

is this normal for iih or is this something else not related? (sorry if this is the wrong flair)

THAT THEY REQUESTED!

I am one of a 3 person HR team at a company that provides disability services, so you'd think they'd have this in the bag 🫠

I was diagnosed with iih back in February. I'm on 2000mg of diamox a day and the symptoms of the iih, plus the side effects of the Diamox are killing me. I'm so tired, I have headaches all the time, my cognitive function blows, and I am still actively losing my vision. I'm waiting for my MRV/ MRI followup on Thursday to discuss surgical options.

My Employer requested documentation from my neurologist about any accommodations I might need, since I mentioned I've been experiencing cognitive dysfunction and have been forgetful/ spacey.

My doctor filled it out and is requesting 10-15 hours a week of remote work to be available to me, if I need it. I've just been suffering through it all while I wait for paid intermittent leave and the accommodations to kick in.

My supervisor (HR Manager) had a rare in office day today and my coworker and I thought we were going to discuss the accommodations and they'd be implemented. Well, the end of the day rolls around, so I decide to check in with her since I hadn't heard anything. Turns out she forgot about the paperwork all together and hasn't reviewed it. Apparently they need to review it, and approve it before I can start utilizing that accommodation. And who knows how long that will take 🥺 I've been holding out for today thinking I was going to finally get a break and some flexibility, and then this happens.

I had a breakdown in my car after work. I don't understand how people function like this.

This on top of having to work with a shitty, dismissive, mysoginistic neuro-opthamologist has been a nightmare 😭

Just needed to vent to people who might understand

So I’ve started taking my Acetazolemide again and the heart burn is killing me I take with meals and WELL before bed time but I had Unbearable heartburn/acid reflux … whatever it is ..it’s S U C K S ,when I take it .

Anyone else experience this and why can I do … :(

I don’t see my neuro for another 3 months and I feel like he thinks everything is Not a side effect …

I posted previously about my daughter (13.) she had her MRI today which showed some markers of increased ICP and tomorrow is LP day 😬

Just something I was pondering:

Kiddo has pituitary failure, including puberty failure. Basically, she has normal anatomy, but something in the pituitary axis is not doing its job and she has not started puberty on her own. She, prior to treatment at age 12, had the hormone levels of a preschool aged child and zero development.

She started estrogen patches December-ish and that’s when her symptoms really picked up. Is estrogen possibly causative? I know birth control pills are possibly problematic so - could this be a trigger?

I don’t know how to square that possibility with the fact that she’s 13 and nowhere near actually completing puberty, but I guess that’s for her endo to sort out.

Crazily enough, my own case was triggered/drastically worsened by a totally different medication (thyroid) which, having no thyroid, I had to continue with (but changed formulations with excellent results.)

Truly feel like lightning has struck twice here.

Not officially diagnosed yet.

While IIH isnt something to be taken lightly, I am just relieved to finally be on my way to an answer. Topiramate is actively changing my life for the better so far.

It all started with roaring tinitus in one ear and light visual disturbances. ENT believed it was Meniers disease. It wasnt. Ophthalmologist saw no sign of retinal detachment or swelling or reoccurring tumors (i had retinoblastoma). No thyroid issues. No blood pressure issues.

Visual disturbances have only been getting worse and worse. Heavy static, total blackouts, blind spots that last for weeks, flashes, etc. And headaches that are so debilitating. But no sign of migraines or absent siezures in tests.

Finally, my neuro decides to try topiramate. And ever since I have had no headache at all, my eyes are slowly improving. My ear is so sometimes quiet I can barely hear it at all. Weight loss in helping as well.

I havent felt this good in so many months. And I have hope for the future now. I believe tbis can be manageable! I can not eben begin to explain how relived I am, as strange as that may sound.

so i’m trans masc on testosterone and i got diagnosed with iih almost six months ago. the majority of my doctors told me that the cause was me being on hrt/testosterone. im on a VERY low dose of T (0.1 ml weekly injections) but i understand that there’s some studies that show a correlation… anyways i was told to get off of T until I got a follow up apt with the neuro, and between that and starting diamox it was the absolute worst. thankfully i saw the neuro and he let me get back on it, i just feel like im STILL recovering even after being back on it for a month.

i mainly just wanted to post this to see if theres any other trans ppl out there who experienced anything like this. i know a lot of women get diagnosed seemingly due to hormonal reasons but i haven’t seen anyone on hrt talk about it. it sucked being questioned by the doctors about why i was even on T in the first place, and part of me still worries that im making the wrong choice by continuing it, but i also know if i dont that i’ll lose an important part of myself. if theres any trans ppl with iih out there im dying to hear from you!!!!!

Hey :) I am currently feeling like on an awful rollercoaster.

i was diagnosed with iih last august and was on 750mg of Diamox ever since.

first we realised i need a lot of additional potassium to stay into the normal range. was on 1.8g daily. even with that i went into potassium deficiency which was not fun at all. i am now taking 2400mg or potassium and are finally back in the normal range.

As I still felt reaaaally awful (drooping eyelids, tiredness, extremely cold and tingly feet and hands, muscle pains, dizziness, I feel like i am drunk) and my chlorid value and some kidney value is not great, they suspect mild acidosis.

Now they are reducing the diamox dosis and i have to take bicarbonate.

Has anyone else has experience with acidosis? how did you handle it? how long did it take to get better?

I got my MRI results back today and they were normal. My doctor called and said they were forwarding the results to my eye doctor. Does the eye doctor or my PCP order the lumbar puncture? I’m worried that since my MRI came back fine that I will be brushed off.

Yesterday night I started getting black spots in my vision, I assumed it was due to me being tired and I went to sleep. I’ve woken up today and I have a banging headache and it feels like pressure against my eyes. I keep getting black spots on and off and I have spent most of today sleeping but I am really struggling. For context, i have suspected IIH and I am on the waiting list for a lumbar puncture and have grade 2 papilledema. Last week I took my glasses off for a minute (I don’t usually take them off unless im going sleep in pitch black) and I noticed how blurry my vision is, I have bad eyesight but it definitely got worse and now with this headache I am really worried but I don’t want to go to hospital and waste time. Opinions?