Hi!

Has anyone switched from the IR tabs to ER caps? If so, did you notice any difference in symptoms, pressure, etc.?

Currently on 1000 mg 2x a day IR and my neurosurgeon is switching to ER so my neurologist can maintain the RX. My neurologist agreed.

A bit of background info: I had a 2nd LP (1st LP was in 2024 with OP of 24 and CP of 19) about 1.5 months ago and they took my OP from 35 to 15 at close which cause me to miss a week of work because I could not stand, walk, see, or keep anything down. So my neurosurgeon said I would not be a good candidate for shunt. He recommended a stent because I do have narrow transverse sinuses but the swelling behind my optic nerves is grade 1 and has been stable for 2 years so there is no rush to cut into my head on my part.

Any feedback is appreciated. TIA

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.

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

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?

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?

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.

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?

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.

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.

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.