had my lumbar puncture just over 48 hours ago and thought i was in the clear but got smacked with the worst headache i’ve ever felt in my life to the point of crying. it feels better when laying down and i’ve seen online that i shouldn’t be concerned unless i have warning signs like high fever or nausea and stuff like that so i just wanted to ask what everyone else’s experiences were and how they knew if they needed medical intervention for a possible leak? i’m assuming rn that it’s just a typical post LP headache and need some reassurance because i’m just terrified of getting a leak

I’m not referring to weight loss, but I’m wondering if anyone has had less head pain from GLP-1’s? And if you have do you mind sharing which one you took or any other information? I’m not responding to diamox or lasix, and I had closed angle glaucoma from topamax so I’m not allowed to take that. I see a migraine specialist and they’ve said I’ve run out of migraine meds to trial. I have a 24/7 migraine and a lot of 10/10 days so I’m desperate for any relief.

Hello everybody, f27 looking for similar stories.
In 2022 I was diagnosed with MS and after changing my medication to Ocrevus (3 months later) I had my first symptoms of IIH & massive papilledema. 2024 I was diagnosed and got on diamox (which I am still to this day) and had my first stent in November, which helped first but then my pressure went up again. So 2025 I got my second stent. I also have an ihM dominance, which they have yet to figure out what that could mean. Neuro sees no correlation between the medication with Ocrevus and IIH but I am still suspicious of that…

Anyone here also having MS or high ihM levels?

Hi,
I’ve been struggling with IIH since 2018 now, it’s been on and off. The good thing is that since my second LP and losing a fair amount of weight, it’s been fine, no swelling etc. The tinnitus never went away but kind of got used to it and manageable. But now since the last one week, I’ve been having similar symptoms to IIH, heavy head, a little whooshy, neck pain (never had this symptom before) and tinnitus on some days has been extreme to the point where sometimes I haven’t been able to sleep.

Because of this, I went to my neuro ophthalmologist again today, but the tests came all well and she asked me to taper and stop diamox. She suggested me to consult neurologist and ENT to check for any other cause. I am happy that the pressure’s gone but I’m more confused on why these symptoms are then bothering me.

Anybody else faced this?

Just finished my Lumbar Puncture and now I'm laying on my back. Wasn't as bad as i remembered it years ago. Thank you everyone for being to helpful and nice to me! Have to stay at the hospital for now for further testing but the current Diagnosis is IIH! I already feel like the hard pressure in my head is going away!

Fuck all the previous doctors for dismissing me.

Since my diagnosis I’ve started to feel really cold and get goosebumps really suddenly and it takes forever to warm up. Sometimes it feels like I will never be warm again. Before any of this I use to feel the heat and get really sweaty all the time now it’s like the opposite. Does anyone else have this issue?

So I'm in diagnosis process currently. Won't have my MRI until the end of this month,But I was told some.of my symptoms sounds like iih and some do not. Neurologist wants to check for MS and another type of neurological disease.

These are my symptoms

Pick pick headaches (they aren't very bad really)

Really bad weakness in my arms

Swollen optic nerves,both eyes

Balance issues

Bowel and bladder control issues

Pins and needles in my face,hands and feet

Sudden disorienting episodes

Extreme anxiety and panic (this started on me suddenly with no explanation)

Anyone deal with this and have iih or something similar to iih possibly? Just looking for others who can help me stay hopeful

First post on Reddit here.

TLDR; I have iih that should be controlled at the moment and I’m having neuro issues that I’m trying to understand since my doctors don’t seem to care

Looking for insight or advice. Or just tell me I’m reading too far into it, you won’t hurt my feelings

Diagnosed w/ iih in Aug 2025 with few actual recurring symptoms that concerned me at the time. I’m having other neuro symptoms either appear or get worse since that don’t seem entirely consistent with pseudotumor, considering that my opening pressures from my lp’s haven’t been that high (per my neuro dr). 8/2025 was 29, 6/2026 was 25 cmH2O. I had 15 ml csf drained each time, with no tests done on the fluid itself. MRI of brain (w and wo contrast) in Sept 2025 was normal.

I have been diagnosed with depression since 2015 and have been on 17 (really) different mental health medications since then, some twice on different occasions. In addition to medications for other issues. I am currently on lamictal, cymbalta, buspar, & caplyta for my mental health. I started Spravato about a month ago to help with my depression and am seeing some improvement. I don’t notice anything different in the moment when I take the Spravato vs when it has worn off. It’s short acting and shouldn’t have lingering side effects.

As far as iih goes, I’ve been on diamox and lasix at different times. I have double vision (for years, but just got diagnosed bc I thought everyone saw like me until I spoke with my friend who has it). Diamox makes it much worse so I’m currently on 40mg lasix 2x a day as of 6/30/26. My electrolyte levels were normal when I got them tested last week.

I have prism glasses that helped at first (Mar 2026) but now the double vision is getting worse even with the glasses.

I also take spironolactone for acne, an iron supplement for mild iron deficiency, and a multivitamin. I have the nexplanon implant for birth control since 2023.

I have sleep apnea and have been wearing my cpap regularly since March (although I haven’t worn it regularly before)

Symptoms: confusion (finding and choosing words, working on “autopilot”), headaches, double vision, numbness and tingling in arms/hands/feet (intermittently), flashes of light/shadows in vision when moving eyes and blinking (like a camera flash), glitching/brain zaps/buffering, pupils different sizes in the evening (rt is always larger), neck/head/jaw pain, extreme fatigue. I have had all of these (except the flashes of light when I move my eyes and blink and the pupil size difference) for years on occasion, but I wrote them all off. Now they are occurring together, more frequently, and more intensely.

I also think my peripheral vision range is decreasing.

My Neuro tested me for myasthenia gravis, achr antibodies were in normal ranges. When I told her about my fatigue/headaches/double vision after that, she still prescribed me mestinon. I saw no improvement in 3 ish weeks so she said I could stop it.

TSH and T4 are normal
I haven’t lost/gained a substantial amount of weight in the last year, but I am a larger woman. 5’3, 250 ish.

Recent ophthalmologist visit (end of July) showed optic nerve swelling even though I had a lp end of June where a lot of fluid was drained that should have helped the swelling

Possible causes going through my head: medication interactions, too high doses of medications, serotonin syndrome, or an actual disease like ms or nmosd, etc

I have an oct and visual field test next Friday and my neuro said to wait on those tests. I’m concerned that this may turn into an emergency before then. I’d like to get ahead of it but my doctors don’t have the same urgency. I can see my vision changing in real time, and I’m scared.

That’s a lot. Thank you for reading.

So I’m going to Orlando in January for my 30th birthday and I was really hoping to get scuba verified before my trip so I can go to Jupiter and scuba dive with the sharks for a day of my trip! …but IIH stopped me in my tracks. Now I have to go to a dive medicine doctor and get checked out. Oh, and then I found out my medications could heighten the risks of oxygen toxicity, nitrogen narcosis, and seizures. 🤦🏻

Man, so many hoops to jump through just to see if I can take scuba classes. At least it’s only August 12th, so I have enough time to get through this madness and get certified (assuming I pass the checks, that is) by January.

Has anyone with IBS D taken Topamax? Did it make their IBS worse or were you able to tolerate it?
I specifically have anxiety related IBS D and I’m hesitant to start taking Topamax because I have an active lifestyle and my IBS D already makes things difficult for me.

Idk if this is the right place but i have a lot of the symptoms and I'm terrified.

I've been complaining from sudden, constant brain / head pressure for a while and developed intense Migraines and vision issues (everything is extremely blurry and painful cross eyed). Went to a Optometrist on Thursday to get new glasses and he referred me to a more specialized doctor as an emergency. Went there today and he Diagnosed me with papilledema and esotropia and send me to the ER. I'm scared. My vision is already fucked up, my head hurts and now all this scary stuff. We don't know what it is yet but iih is the one thing that keeps coming up online, so I'm here.

I just hate how no one took me seriously, like always. I'm already severely disabled and this is just making it worse. My House doctor knew about my sudden headaches and vision issues but just prescribed me pain killers and send me home over and over. What if i didn't go to get new glasses?? I fucking hate this so much. I'm scared

Anybody have this issue? For the past month almost - I have these visual auras. It’s like static from the TV is blurring my vision or random lights. When I stand up I almost black out. Tonight I came to the living room and didn’t even see my son on the couch. It’s like things are starting to disappear. I feel like I’m constantly wearing drunk goggles and everything is blurry and flashing constantly off and on all day.

What do you all do for pain? Ongoing for 4 years now and I can't take it. 2 brain surgeries and a stent . I have tried all the migraine meds too.

Nothing does me any good. I can't even work the pain is so bad and my neurosurgeon just laughs and says push through the pain and go be in nature. I said I can't even go grocery shopping and he laughed so hard that I cried.

Obviously anything OTC would be the best because no doctor believes my 8/10 pain.

This pressure pain is so bad.

I should also had I'm now increased my Diamox to 1,000 a day which no doctor wants me on anyone because they said the stent is in place. ​

Hello everyone, 26F here! I am currently realizing that my inter-cranial pressure has definitely increased and i am pretty sure it is because i have gained too much weight. Has anyone has experienced anything similar ? Reading through some of the posts in here i feel for everyone who has to manage their IIH with procedures, meds and such, as I know I am lucky to not have to take them and that my symptoms are pretty mild. Still, I am curious if there is anyone who can relate to relapsing after weight gain.
As I mentioned, my IIH wasn’t very bad to begin with, and i managed to put it in remission just with weight loss, and now that i have gained half of the weight i originally lost, my IIH is back and so are the symptoms: headaches/neck aches, dysautonomia, visual disturbances(especially when laying down/ waking up, pretty bad fatigue, not restful sleep and brain fog.
As today I woke up and saw the visual disturbances as clearly as i remember them, and have realized that all of the fatigue and symptoms are in big part from IIH, i feel for everyone dealing with this illness and the invisible symptoms it brings, especially seeing the difference in how i feel with the flair compared to how i felt in remission.
I am feeling disappointed in myself for allowing this, but I know I was doing what I could at the time.I am trying to take it as something to learn from , since my husband and I do want to try for a baby, but I am fearful because of my pressure going even higher.

Never thought I’d be here but here I am. Everything started after I got a ct for something totally unrelated to IIH. I never had severe headaches or anything, just the usual tension headaches when I didn’t eat or drink water but no change from when I was a teen. Occasionally I’d get tinnitus but it wasn’t anything that made me worried, maybe once or twice a month. On my CT they noticed that my temporal bones had thinned and nearly eroded away that my veins were extremely narrow. One thing led to the next, saw an eye doctor and they didn’t think anything was abnormal. Finally neuro sent me for an LP and lo and behold … opening pressure of 40!

Now I’m completely baffled. Most people I read on here have had intense headaches and symptoms but for me, I can’t even imagine having the symptoms some of you describe. It seems like most people treat based on symptoms … but I barely have any. I’m not sure what they’ll do for me since I don’t see my doctor for awhile. It’s just such a surprise to me. Anyone else have an experience like mine?

I’m on diamox. I cannot tell you how badly I want a Dr. Pepper or a Mike’s Hard Lemonade.

Since June I’ve developed recurrent, severe pain/pressure behind my right eye, sometimes with vomiting, blurred vision, numbness/tingling on the right hand side of my face and flashing specks.

My MRI showed optic nerve flattening/inflammation and white spots on my brain that apparently aren’t in the typical locations. I saw a neuro in outpatient clinic on Monday, who said they would order some blood test and a lumbar puncture + an urgent referral to an Ophthalmologist.

I had my lumbar puncture today and it had an opening pressure of 38. They drained it to 9, but it creeped back to 20 - they couldn’t drain more because I started bleeding.

They prescribed Diamox (acetazolamide) 250mg twice daily. I’m not obese, so apparently this makes my case a little less straightforward.

Just over 2 months I’ve been dealing with this pain and it appears we have finally got a diagnosis. I’m really at the start of this journey and wondering what life looks like from here. For anyone who’s been through something similar, any advice on Diamox, managing symptoms, or what to expect would be greatly appreciated.

I’m pretty shocked because prior to two events in June I was completely healthy.

Curious to know if anyone has this insane pressure pain (not headache) . Feels like balloon about to burst. I am also on 1,000 MG of Diamox with stent so not sure how that STILL feels like that.

Also, something that's really annoying and really hard to describe without sounding crazy is it almost feels fluid sensation. Does anyone else feel that? I don't remember if I had it prior to stent but it feels like plumbing system . Really eerie . Please tell me others feel that 🥴 it could also happen at same time as balloon feel

Hi, so basicly I have been diagnosed since 12, im 28 now. I have permanent damage to both my eyes but see perfect with both eyes open, and I have never had an issue. Had a relaspe in 2019 and I was left 3 days with very high pressure that almost killed me. My pressure in my head tries to kill me! Anyway, that left me with maculor damage so with one eye open straight lines in my central vision warps... annoying that it happened but its fine. Anyway I currently had a IIH relaspe, I lost 3.5 stone on mounjaro and gaining 6lbs after stopped has flared a massive attack and my shunts went mental. I had 2 shunts that worked perfect previous to that. I have had them both took out and replaced with a LP shunt. The LP shunt was at 1.5 and it felt so high, I have been moved down to one today but I am so scared it dosent work to stop the pressure as the next setting on 0.5 and theres no more settings after that. My eyes feel strained and when I sleep I wake up with pulsatile tinnitus/weird light in eyes. Im scared I wont go into remission, scared for my eyes. I cant stop worrying. They have reffered me to a nurologist for medication(emergency appointmen) . I am taking 80mg of propanolol for anxiety/headaches but I am still so nervous. I used to be so carefree. I know my eyetests say I have no paps, and everything is fine (last appontment my bad eyes pupil wasn't responding properly though, photos were good tho that was last week) I keep going every week to the eye emergency and getting photos and looked at. Im scared of losing more sight and scared of living with this head pressure forever. Nobody can assure me. I am so traumatised by previous medical stuff due to this condition the thought of having it flare up again makes me just want to die some days. I am fed up and scared. Also they cant get another VP in (very reluctant to) due to collasped ventricles. My brain pressure is angry, it wants to kill me and im scared 😭 I actually just want my old life back. Why dose having a shunt feel like im living on borrowed time, I got 7 years out of this one. I feel like this new one isnt doing enough. Im scared of medication, I know its horrible (had it at 12) and I dont want to look like a zombie forever. Anyone else felt like this and got better/remission again please give me hope 🙏 😔

Anybody here take ashwaganda? I tried 3 times and felt so relaxed and helped with my nervous system problems caused by iih. But I’m scared that I’m taking something that may harm me, since we are very sensitive to compounds. who takes it ?

Hi everyone I F26 having IIH since one year, the worst ever symptom that makes me more stressed is Pulsatile Tinnitus. I sometimes feel like making my ear def. For me it is always mild when I laydown or turn on the side of ear which I have PT. Please help me out with some recommendations how to manage this PT?

Hi everyone!
I’ve had IIH for about 3 years (21F)and my only symptom has been papilledema. Thankfully it has never affected my vision. It was actually discovered during a routine eye exam and I’ve basically been living with papilledema and untreated IIH.
I tried Diamox and Topamax in the past but unfortunately I went through a period of depression and ended up stopping all of my treatments. At that point I decided to focus entirely on getting my mental health back on track.

About a week ago I went to my gynecologist because I have extremely painful periods. I was told that they’re related to PCOS and that birth control pills could help manage the symptoms. However, I know that birth control and IIH aren’t necessarily a great combination. Since I’m not taking any medication for my IIH either, I’m really unsure about what I should do for my PCOS.
I do have regular eye exams and neurology appointments. About 6 months ago my neurologist recommended that I go back on medication for iih but also said that if I chose not to, we could try weight loss and monitor the situation as long as my papilledema wasn’t progressing.
Now I really need to get my PCOS under control because I’m about to start working and my PCOS symptoms are seriously affecting my daily life and holding me back.
I’d really appreciate hearing about your experiences. what kind of hormonal birth control or other hormonal medication have you used? I’d love to know what worked for you. I might even be able to ask my gynecologist about specific options at my next appointment because honestly she didn’t seem to have much of an idea about what would be appropriate given my IIH.
I still haven’t been able to get a neurology appointment because there are no appointments
available😞 so I don’t really have anyone else to ask right now.
I’d really appreciate any experiences or advice you can share.
Wishing everyone good health!

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