r/iih

I’ve been on 500mg of Diamox for about a month and have lost about 5 lbs.

My neurologist has really emphasized weight loss to increase my chances of going into remission and a target BMI of 24. Mine is 28. I already eat a vegetarian diet and got my 10K steps each day as a teacher. Before Diamox, I’d have the energy to go to the gym a few days per week too. After starting Diamox, my energy and clear-headedness was often replaced by a constant dull nausea, irritability, lethargy, and brain fog.

I started Wegovy this morning. I went out of network (US insurance didn’t cover it) to pay for it. I also have unmedicated ADHD that I usually use lots of coffee to get things done.

Here’s my report back from Day 1:

-I took my Wegovy about an hour before anything else first thing in the morning. It was hard to only have a sip of water because the Diamox already makes me so thirsty, especially when I just wake up. I need a better hydration game plan for day 2.

-I had a boiled egg and a banana for breakfast and lots and lots of water with no issues with nausea from the Wegovy. I then took the Diamox on a full stomach and with lots of water.

-About 15 minutes later, I got a barf bag ready, but thankfully nothing happened. It was the Diamox giving me its regular dull nausea, but today’s was somewhat more pronounced.

-I went to lay back down in bed for a bit but realized my mind was AWAKE and had a lot of ideas for things I wanted to DO today. Thankfully the nausea/weirdness subsided 15-30 minutes after that, and I was able to get up and slowly move about. (It’s also the first day of my period, and I had a major headache from dehydration that morning/overnight with not waking up as much as I usually do on Diamox to drink water/pee repeatedly.

-Slowly but steadily, I somehow cleaned the whole house for fun?! And rearranged some things?

-The Wegovy is only 1.5 mg today for the starting dose, and I experienced no change to my appetite. I was still nonstop hungry all day long. However, my working memory, general mood, alertness, and being able to transition from one task to another without cognitive exhaustion today has been a lot better than usual without the jittery feeling of espresso. I didn’t even have coffee this morning.

TLDR: Possibly placebo. Way too early to say. No major interactions between Diamox and Wegovy. Also no change to appetite Day 1. However, my ADHD and general mood possibly seems to love the Wegovy. It’s a keeper.

Does anyone here feel better when they’re standing/moving? I feel like my pressure is worse when I’m sitting and driving but if I’m up walking it’s less? Is this normal? Also, not sure about the laying flat part as my bed is always on incline even before I was diagnosed. But I can say laying on my left side is the only way I don’t feel pulsating and throbbing in my head.
Just wondering what others experience. 😀

I can only sit or stand for 5-10 mins before a migraine kicks in, then it’s back to laying in bed with no pillow for it to calm down.

I didn’t think I would have a CSF leak because I was lying flat for over 2 hours after the procedure, only got up to pee and then was driven home, where I immediately laid back down in bed for the next 48 hours. I only ever get up to use the bathroom or eat for no more than 10 mins at a time.

The LP was X-ray guided and the doctor was excellent (felt no pain), so why would I have a CSF leak? Doubtful that I can work tomorrow…

So I was diagnosed in 2024 (got lp - 42) my eye doc told there is some swelling so I used diamox upto this year February , I don't get headaches except pulsatile tinnitus in my right ear all day. So recently I consulted neuro-ophtho she did some tests ( oct, fundus) said there is still some mild swelling. And then I went to my regular eye doctor (ophtho) he said there is no papilledema and it's good. whom should I believe? I'm confused.

kind of in a tough place since my ophthalmologist is out for the weekend. i have an allergy to mosquito bites, nothing bad but they swell up to softball size. normally i take benadryl to calm the swelling down and we are good to go, but i read online that benadryl can increase intracranial pressure and basically counteract the diamox.

essentially, what would yall do? have you taken a low dose benadryl and been fine? should i just go to urgent care so they can take a quick look? i’m not too bothered by the bite but the swelling is worse than usual and it’s been a week so i’d love to do something for it lol

Hi everyone,

I was hospitalized due to severe headaches and blurred vision. My opening pressure was 35. I had severe swelling of my optic nerves in both eyes. Doctor determined my IIH was due to my recent weight gain and losing the weight will decrease my pressure. The goal is for me to get off the Diarrhea-from-hell meds they gave me, acetazolamide. I've been on this for 6 months at a 1000mg per day dosage and after losing around 40 of my 80lbs, I'm really looking forward to getting off these meds, or at the very least right now, decreasing it back to its original 250mg twice a day.

What is the protocol for that? Do they really have to measure my pressure again with a lumbar puncture? Is it simply just looking at my optic nerves? or is it based on body percent fat loss that determines if we have decreased dosages or can start weaning off.

Any help on what I should be asking my doctor for is appreciated.

Hell...

Earlier this week, I posted this: https://www.reddit.com/r/iih/s/xQiXCy15rd and several of you suggested going to the top research hospital in my state if my Neurologist continued to let me down, symptoms got worse and yesterday, my mom and I went. (Also a message from Neurologist saying they can no longer help me outpatient bc of serious symptoms and to go to ED now).

It was 1 of the worst ED experiences I've ever had and I've been 20+ times in just the last year bc of chronic illness and my care team making me go.

Yesterday late afternoon, I showed up for the 1st time ever to the top research hospital in state which is not easy to get to. I went to the check in desk, described my symptoms and the staff legit freaked out. The minute I said loss of sensation in my face, loss of vision worse in right eye, pulsatile tinnitus and a stiff neck (just a few of the many things happening), I was pulled right back. NO WAITING... STRAIGHT TO TRIAGE... which yall know means business bc it was packed and a level 1 trauma center.

I have nurses all around asking me meningitis and stroke questions and all the things being done - bp, fever check (none), dozens of Qs coming at me... I am then rushed to a room but then they switch me to a different negative pressure (?) room for infectious diseases.

This really dismissive nurse comes in in full N95 + PPE and talks to me like Im a child (I am Gen X so older than her), takes a lot of blood and then looks at my allergy list, proceeds to tell me I have never experienced real anaphylaxis bc Ive never been intubated (what the fuck does that even mean bc my epi works so no idea what she was on) and that I am not actually immunocompromised bc I dont have "neutropenia" (???). I said I am IgA deficient and on and off steroids + immunosuppressants and very angry at this point and my Immunologist and Rheum would disagree with her.

Then we are left in the outcast room, locked in for 4 HOURS. I have to beg to go pee and when I am let out, I get yelled at for opening the door bc of "infectious disease" (I dont have a fever and my neck has been stiff for 4 weeks, how TF would i have meningitis that long). We are treated like pariahs.

After hours, the emergency physician and resident finally come in and say my MRA was fine (I had it Wednesday bc there was a same day cancellation so no 2 month wait) and that they have no idea what to do with me bc my symptoms dont make sense so they need to page Ophthalmologist (not Neuro-opthalmologist) and Neurologist.

These 2 "specialists" finally come in and the Ophthalmologist says no Papilledema (I know, my eye clinic checked on Monday) and that whatever is going on is in my brain (no shit).

So then Neurologist steps in and asks me so many questions including Qs about the increasing fluid leaking out of my nose. They said they could test it but they only have a glucose test that isnt very reliable and they need to find the hole first (if there is a hole) from the intracranial hypertension (so FINALLY someone believes me) but that the MRV cant be done in the ED, only CTV and that I should just wait for the stat MRV my pcp ordered 2 days ago which is this coming Wednesday. No one has bothered to order a brain and neck MRI, no one bothered to do a regular CT for internal brain bleed (I legit had stroke symptoms yesterday, half my face went numb w/sudden vision loss). I said does an MRV find a CSF leak and show ICP and they are all yes (I see it may not and that I do need a brain MRI). The Neurologist walks out with my severe symptoms and just says wait, even with a suspected cranial CSF leak at this point and no imaging.

WTAF.

At this point, it is almost 2am and we are locked back in the room, I hadnt eaten all day, my mom is cancelling her vacation plans today and I am just about to rip my IV out.

I push the call button and ask to be discharged bc I would rather die at home than have subpar care from the best hospital in my entire state.

And NOT ONCE did they suggest an LP.

What now... Yall I am so angry. I have been up since 9am yesterday and spent 10+hours not getting anything but basic labs I can get any day and being exposed to very sick people as an Immunocompromised person with a sus cranial CSF leak.

How do you do this... My Neurologist... is clueless. My Neuro-otologist and ENT all say go to Neurologist.

Im exhausted. Thanks for reading if you did.

ETA: the emergency physician that took over came in at the end right before discharge... I looked at them and said why no imaging to rule out brain bleed or CVST etc (bc MRA doesnt do that) and they turned it back on me to get the heat off them being dangerous in their poor workup and said "CT is unnecessary radiation" and Im all so youre letting me go without checking for a clot...

My mother (50) has suffered from iih for almost 4 years now (late 2021). Alongside her iih, she suffers from vertigo, migraines and fatigue which all appeared around the same time she was diagnosed with iih. Her vertigo is ruining her life. She used to be an overall healthy individual. She is the most caring and welcoming person I know. Our house was filled with guests almost every weekend. My mother never says no to anything. If you need help, she will do anything in her power to assist you. It hurts me to see her almost bedridden now. Her vertigo prevents her from completing everyday tasks she used to love such as cooking or hosting friends over. She’s no longer her cheerful and bubbly self. She can no longer bear being around people nor leave the house.

I've been trying my best to support her. It hurts me physically seeing her in this state. Every doctor she has been referred to has been incredibly dismissive. I’ve had to advocate for her for years. Her primary care physician is also incredibly unhelpful. There has been numerous times where I had to ask her to check for underlying issues or something as minor as getting a blood panel. It wasn’t until 2023 she was put on acetazolamide for her iih. And since 2021 she has gotten multiple MRIs done to check for factors that may be causing her symptoms, but nothing came up until last year when I asked her neurologist to allow her to get another MRI but with contrast. It’s immensely frustrating they never cared to look deeper. Weeks later, we were told she has bilateral transverse venous sinus stenosis which basically means there is significant narrowing of her transverse sinuses which are crucial for draining blood from her brain.

So what was their solution to that? Stenting. We met with an interventional neuroradiologist who seemed a bit shocked to know she’s been undiagnosed for years so he told us stenting was the best treatment for this. She agreed to get the procedure done beginning of this year. Days after the procedure, she experienced very painful headaches she has never before but it was all apart of the healing process. 3 weeks after that, she was migraine free and vertigo free which brought her and all of us (her family) tremendous joy. We never thought this day would come. But that joy was short lived. The vertigo is back now 3 months later and the migraines are even more intense than before. She is back to being bedridden and incredibly depressed this time.

I’ve cried almost every night praying to God to guide us towards a treatment that will actually work. I’ve been doing extensive research to see maybe there’s something her doctors aren’t looking for. It makes me feel like I’ve failed her. I can’t even look her in the eyes anymore without getting emotional knowing how she was before. I’m honestly not sure why I wrote this. Maybe I just wanted to vent. Or perhaps I was looking for support. I know she isn’t alone maybe one of you is also going through this.

Earlier this year I was put on Doxycycline and started having weird symptoms after around two weeks:

- daily nausea accompanied with light sensitivity to the point where I just needed to lay down

- tingling that felt like it was in my skull, especially left sided

I was told by my doctor to stop taking it, but IIH was never mentioned. However the skin condition I have needs to be treated with a tetracycline but I don't want to risk developing intercranial hypertension obviously. How did it start for you guys? Does this sound like IIH to y'all?

Does anyone else experience incredibly dry eyes in the morning that then tend to slightly get better throughout the day? It feels like someone took sandpaper to them In the morning, it’s awful and lubricant drops don’t even seem to touch it. It used to only happen on some days a while back but now it’s every morning. I’m also not on any medication as of yet.

Alright guys, as it gets closer the more nervous I get. How will recovery be? Am I going to have a Viking hair cut for awhile?

How was the pain and fatigue after? How are the headaches now? Any vision return? I have no peripheral vision left. Can I expect to see what’s around me again?

What does it feel like inside your head and in your neck?

So many questions sorry.

Hey everyone, I'm a 20yr old male and i've really just been suffering with this the last few years, though it's gotten progressively worse this last year (since my etd like symptoms started last june). Literally feels like the pressure's been building. I just want a diagnoses and I'm finally getting it looked into properly after learning it might be an intracranial pressure issue.

Symptoms (timeline + current):

• Acquired horizontal double vision (esotropia, both eyes) — started August 2022, surgery May 2023. Was worse at distance, worse when I relaxed my eyes, came and went a few times, then became permanent leading to my surgery. Surgery helped alignment but I still get occasional double vision when unfocusing my eyes or when really bad pressure.
• Constant head pressure / fullness behind my forehead and eyes — feels like pressure in the top front of my head, above my nose up to above my eyebrows, like it's just full. It's gotten worse over the years. Tylenol/advil doesn't touch it. Worse when lying flat, and this might not be relevant or might be just placebo but it gets worse when its raining/gross out.
• Blurry vision getting progressively worse over these few years
• Vertigo / swaying — a feeling of swaying when I'm still, like I'm tilting to one side, or like my eyes are swaying.
• Pulsatile tinnitus — mainly when I'm lying on either side. I'm gonna mention that i haven't kept track of this one as well but it seems it happens mostly when laying down on my pillow on my side.
• Ear fullness / clogged "ETD-like" feeling — started about a year ago. Also a squeak and outward pressure that briefly releases when I do a Valsalva. (ENT testing was normal — not obstructive ETD even though I was diagnosed with ETD for 7 months by another ent who did no proper sound testing) Started last june and got worse over time.
• Constant brain fog, literally won't go away.
• I often catch myself squinting, pushing my head back, or bulging my eyes to try to see more clearly.
• Drusen on my optic nerve since Iwas a little kid, so they might have missed if there was any swelling on my optic nerve.

Any opinions or advice would be great. I have my appointment with the first neuroopt monday and if there's any other conditions or questions I can ask about that anyone thinks of, I'd really appreciate it :)

I was recently diagnosed with IIH and prescribed (2) 250 mg Diamox daily.

I work a very mentally demanding job that requires high accuracy and long hours.

Will I still be able to function the same cognitively? If there are any changes with Diamox, will tapering off make me go back to my old self, or does the medication permanently change me?

I consider myself a kind person and love social interactions. Should I expect behavioral changes due to Diamox?

Hey! I’m in the process of getting a diagnosis. My eye doctor spotted papilledema, but no signs on my MRI scan. My doctor placed an order for a spinal tap, but my neurologist said there’s no reason to get it because I’m not overweight. She said that the only reason why she believes I don’t qualify is because I’m not overweight. Maybe I don’t have the right information, but do you have to be overweight in order to have IIH? Anyone here who is not overweight and has been diagnosed?

tyia!!

I genuinely wasn't expecting to find a community on reddit for iih while looking up tips today. My diagnosis was 2 weeks ago and got a lot of restrictions until my follow ups in a couple months.

I had the, apparently, fairly rare indication of iih by having 2 tonic-clonic seizures in 2 hours. It took 3 days in the hospital for my diagnosis because I hadn't noticed any typical symptoms. I had tinnitus, fatigue, and headaches, but I've also experienced all of those consistently in the past and didn't think much of it.

I realized the other day that I think I've been having focal seizures for nearly a year, but didn't know what they were. Is that something anyone else experiences with iih? I thought they were just really intense mini dissociative episodes until I was looking up different kinds of seizures. I'm trying to learn as much as I can.

Came across this fairly recent research study on unusual presentations of IIH to do with cranial nerve involvement, papilledema, etc. which tracks with my longwinded journey. Thought I’d share the link here, in case it helps anybody else breathe a bit better from being told it’s ’all in our heads’, which it literally is, and to just ‘take a vacation’ to get over ‘being stressed’.

https://journals.lww.com/co-neurology/fulltext/2023/02000/expanding_the_clinical_spectrum_of_idiopathic.7.aspx

I've been having hallucinations for the past month ranging from cookies to chlorine.

Head ache is worse too.

Have been thinking of going into the ed and asking for a spinal tap had anyone ever had luck with this? I'm miserable and just want relief.

Has anyone else's IIH symptoms gotten dramatically worse during calorie restriction before they eventually improved?

I have diagnosed IIH with papilledema, and I'm starting my bariatric surgery pre-op diet. Every time I reduce calories, my symptoms flare badly—ear pressure, dizziness, nausea, headaches, and eye fatigue. Ironically, I feel much better when I'm maintaining my weight.

Did your symptoms improve after a few days or weeks? Anything that helped you get through the pre-op diet?

I got diagnosed last week with IIH out of nowhere. Basically I was getting a routine eye exam, they noticed some swelling behind my eyes, told me to get an MRI, got the MRI and was told to go to the ER immediately for a lumbar puncture. Pressure was a 36 and I got diagnosed with IIH. No one at the hospital seemed to understand how it worked, what it meant for me, etc, and I was rushed out of there and told to follow up with primary.

Had a follow up with my doctor and she’s been obsessing about my weight + salt intake. Told me I cannot go out to any restaurants, cannot have processed food, cannot have any fats, and I need to keep my salt intake below 1500mg a day. Did not really explain why. This whole thing feels like I’m being unnecessarily tortured and I just wanted to see if this is actually that serious?

It also doesn’t help that I’m in a small/mid sized town that is over capacity and no one seems to have time to explain anything to me. I tried calling a bigger city hospital about an hour away and they said they only see internal referrals.

Would love any advice because like I said this all happened within the last week and has turned my life completely upside down, especially with the no salt thing. It is really wearing down on me.

Hi everyone,
I’m new here after being diagnosed with IIH, and honestly it’s all been a bit of a whirlwind.

I only went for what I thought was going to be a routine eye test, and they found swelling in my optic nerves. Everything happened so quickly after that, and I ended up being diagnosed with IIH. It was honestly such a horrible experience and completely unexpected.

The lumbar puncture was also horrible. I know it was necessary, but I found it really difficult and I’m still trying to process everything that’s happened.

I’ve now been prescribed acetazolamide and I’m supposed to be starting it this week. The only thing that’s making me nervous is the UK heatwave.

I’ve read that acetazolamide can increase the risk of dehydration and affect your electrolytes, so I’m wondering if it’s safe to start taking it while it’s so hot outside.

I was also wondering about alcohol. The doctors didn’t really tell me much about the medication apart from not taking it if I’m trying to conceive and that it can cause pins and needles. Is it okay to drink alcohol occasionally while taking it, or is it best to avoid it altogether? (online is telling me conflicting things)

Also, does anyone have any general advice for someone who’s just starting acetazolamide? Things you wish you’d known, common side effects, tips for managing them, things to avoid, or anything else that helped you?
I’ve been trying to look things up online, but if anything it’s just made me feel more overwhelmed and anxious.
I know everyone is different and I’ll be following my doctor’s advice, but I’d really appreciate hearing about your experiences.
Thank you so much. ❤️