r/iih

I (31F) was diagnosed in February of 2019 with visual disturbances, pulsatile tinnitus, debilitating pressure headaches that radiated down my neck and back, and paplidima. I had an LP opening pressure of 22. MRI was normal.

I was initially put on Topiramate and diamox. I couldn't tolerate diamox so I was switched to furosemide and stayed on both medications until I lost 10% of my body weight. Once I did that I was considered in "remission" and taken off the meds completely.

5 months later I had my symptoms come back but had since moved across the country. I had not gained the weight back, but the meds seemed to be keeping everything at bay. I was not given the option of meds again and was told to just lose more weight. Something had to be going on under the surface but I was dismissed.

Over the years I have been getting cyclical flairs around fire and monsoon season here. These had been getting progressively worse and spanning more time out of the year that I was out of commission. This year things happened very fast.

I went in for an eye exam and a change in my migraine meds. I was told my paplidima was severe and I needed to go back on Topiramate and get another LP. Opening pressure was 36 so they drained a good amount. While I was getting my LP the surgeon mentioned Venous Sinus Stenosis and I should get an MRV with contrast. The radiologist said my MRV was normal (congenitally small left side) but my doctor disagreed. As my vision was deteriorating quickly and my headaches were getting worse we decided to do an angiogram 4 days later. The angiogram showed a 16mmHg gradient, so they admitted me and I got a stent the next morning.

I can answer any questions you have about the process or healing after (I'm still in the midst of that). If you're in the Southern Arizona area, look up Dr. Fahad Laghari at Corondolet Medical. He is outstanding.

and does it help?

Hello! I wanted to come on to share a good experience I just had with getting a cerebral angiogram to establish if I have Venous Sinus Stenosis. I am a 27 yo F who was diagnosed with IIH in October 2025 after having constant whooshing (pulsatile tinnitus) in my right ear since 2021 and more recently ocular nerve swelling (which led to my referral to a neuro ophthalmologist and subsequent diagnosis). We got the swelling under control with Diamox and Zonisamide over the course of a few months, but the tinnitus never went away. MRI came back normal, so my MD wanted to take one last step to find any structural abnormalities and referred me to get a cerebral angiogram.

Had the angiogram yesterday, and I was very nervous but everything went very well so I wanted to share what I consider a good experience as encouragement for those of you anticipating going through this soon! Checked in at about 8 am, got into my gown and a nurse started IV access and marked spots on the tops of my feet where they could monitor my pulse. Had a really boring wait for about an hour until they took me back to the procedure room. Before the procedure my doctor came in and spoke with me about how the procedure would go and let me know they’d be giving me anxiety medication via IV so I’m nice and calm for the duration. Once I was in the room where the procedure would take place, they had me transfer to another bed and got me hooked up to their drip bag, covered me in warm blankets, and prepped the entry site. They strapped my head into an inflated cuff and got me nice and snug so I couldn’t move, but it wasn’t uncomfortable. They had some gauzy cuffs on my wrists too which they explained was so I wouldn’t go to itch my face or something while I was being sedated. Again, those weren’t uncomfortable or tight, and my arms had to be by my sides anyway so I barely noticed that. I was honestly lying there amazed at the technology in the room. They started the anxiety medication and I remember listening to music (“Born to be Wild” was playing when I was wheeled in 😂) and the numbing shot they gave me before accessing the artery, but honestly it didn’t even burn like I expected. I guess that’s probably thanks to apathy created by the anxiety medication 😂. They accessed via the groin for me, and made two entrances, one for accessing the artery and one for a vein.

In advance the team told me that closing my eyes would be best so that blinking wouldn’t affect the imaging, so I did that and relaxed so much that I dozed off for probably half of the procedure, then woke up as they were finishing up. I felt a bit weird in my neck when they were testing the pressure in my vein, but I wouldn’t say it was painful at all. Just a very strange feeling that I was happy to be done with. It ended very quickly and before I knew it they transferred me back to a rolling bed and I was on my way back to my room. My boyfriend said it was just about an hour from the time they took me to when I rolled back in the room.

For recovery I had to lay flat for two hours, then they propped my head up a bit and gave me a drink and a snack to wait for 2 more hours. During that time the doctor came in and spoke with me about what they saw. They found narrowing exactly where they thought they would (venous sinus right behind my right ear), and the plan is to go back in a week for an appointment to talk and schedule my stent placement. He mentioned that it was very run of the mill, and that everything else they saw looked perfectly normal so that’s reassuring. I’m on Aspirin and Clopidogrel daily for now in preparation for the stent placement, so just waiting to have this all over with.

Only hiccup the whole time was that when I was getting my clothes on to leave, the site started bleeding again, but I was able to lay flat again and a nurse applied pressure then redressed it with gauze and a clotting agent to help it along. They had me stay for another hour and at the end of that hour, I was able to move around and even go to the bathroom without any more bleeding, so I was finally able to leave at 4pm. Because of that I took an extra day off just to be extra cautious with healing and take it easy, but 1 day later I honestly feel fine and there isn’t even soreness in my groin, just an awareness of the access point that’s healing when I sit or stand.

I hope this gives some clarity and encouragement to someone who might be nervous like I was. The anxiety beforehand was honestly the worst part of the whole experience for me. Obviously not everyone has a good experience, that’s an unfortunate fact of life, BUT I hope that this helps someone see that not everyone has a BAD experience either. Seeing how many people were there having the same procedure as me yesterday morning served as a good reminder to me that the VAST majority of people who go through this have never even heard of or visited sites like Reddit, so take into consideration the experiences you hear here, but remember that angiograms and stent placements are happening ALL THE TIME and the sample of people talking about their experience on the internet is undoubtedly very small.

Best wishes to you all ❤️

Last week I found out that I work with someone who also has IIH. A month ago I also found out that one of the cafe workers in my business, has a granddaughter with IIH as well.

Things like this make me feel it’s not as rare as thought and people are just super under diagnosed. I can’t believe I know three people with it and even work with one!

Okay so the Neuro/optho doc has just scared the bejezus out of me.

Things have been moving fast and I managed to get an emergency appointment with them which is next week. They just called me and said yeah how are your eyes doing right now? Answered them and they're like yeah can you get here tomorrow morning.

Now, the issues I've been having with my eyes. The left in particular, have been annoying but I didn't consider it to be something to stress over. TVO's, greying vision when too active, occasional central vision blind spots. And now it's happening even when I'm relaxing, but comes and goes.

Apparently that warrants an immediate visit. Yes I'm on meds. No, it hasn't been for long, yes I've had the usual MRI and LP drain. (2 in fact) Both at around 35 with a 70ml drain. Within a week of each other and the second was a week ago today.

I was already planning on heading back to the hospital for another LP drain in the morning. Guess that plans changed! FML.

Murphy has it out for me!!!!!!! 🫣🫣🫣

Sorry that call stressed me out a bit. I've just been home, chilling, thinking everything fine, so long as I can still see I'm happy. And now I'm sat here crapping myself about my vision!

I have every symptom of iih but got mri they saw fluid behind me eyes. .

No tumor ,eveything fine. (Praise)

Got mrv ,nothing wrong (praise)

Went to ophthalmologist *no fluid build up (praise).

My symptoms: bottom of my neck and skull ache.

Pulsatile tinnitus for 6 months one ear.everytime I stand my head pounds and my ears ring. Major pressure.

My nose is leaking everyday. Clear.

Pressure so much pressure in my frontal head. Blurry eyes. Nauseous everything comes in waves through out the day.

Never in my life suffered from headaches.

Something is wrong.

I was fuckin normal 6 months ago. Now I feel like misery. Its worst at nighttime. Im in diamox 250x2. So I feel like shit feeling like shit on diamox. Im beyond depressed. My next apt is with another neurologist because the first one suxed.

I need a spinal tap.

I cant live like this. . Im so fuckin depressed. Im 50 yrs old women. I cant wk out. I cant take my kid places. What next? I have been on diamox for 2 1/2 weeks. Just venting .

My husband and I are going to be trying for a baby in a couple months. I had a neuro appointment yesterday and she said I’ll have to stop my migraine meds and Acetazolamide when I get a positive test. She also said most iih patients have c-sections due to the increase pressure during labor.

People who have an iih during pregnancy, what was your experience?

Just struggling between ENT and Neuro for my IIH. I had a lumbar puncture last week with opening pressure 17, and struggling with low pressure headache after two days by that time my Pulsatile tinnitus was not there. For few days it is like I have either one of them pulsatile tinnitus or low pressure headache. Currently taking 750 mg acetazolamide. For my pulsatile tinnitus neuro says check with ENT and ENT says check with neuro. Does anyone have pulsatile tinnitus even after remission?

I am 21 and I was only diagnosed with IIH recently. It started with me going to my eye doctor for my annual check up. I was seeing a new doctor because mine was so booked out, but I didn’t mind. She immediately noticed I had very swollen optic nerves and discussed the severity of the situation. She set me up an appointment with an ophthalmologist and spoke to my PCP to get me referred to a neurologist as quickly as possible. I then had an MRI/MRV which was negative, and an LP with an OP of 26. My neurologist confirmed IIH and started me on topamax despite my reluctance since many people I know have taken it and experienced horrible side effects. I took it for 3 weeks and only got up to 75mg before I had to stop. The severe brain fog, dizziness, clumsiness, exhaustion, everything was unbearable. What’s worse however is that I am on a progestin only birth control called Norethindrone. I haven’t had a period, since mine are so awful (I’m suspicious of Endo), in years and only a week or so after starting topamax, I began bleeding. Bleeding mostly massive clots. I’m now on 250mg twice daily of diamox yet I’m still bleeding. It’s been over a month of this. It’s painful and unsettling. The soonest I can see my OBGYN is October 3rd and that’s from being on a cancellation call list. My migraines are getting worse, my tinnitus is unrelenting, I’m struggling severely with hypersomnia (sleeping 12-16 hours a day) and I feel as though my vision is starting to get worse with floaters, streaks of light, and progressive blurriness. I’ve had a migraine for about 4 days now that won’t let up, no pain killers can touch it and it’s driving me crazy. I still drive, still work in a hospital with many 12 hour shifts, and still have school. I feel like my life is about to be ripped out of my hands because of this awful condition, yet my neurologist (not even, their nurse practitioner, I have yet to actually see my real neurologist) acts so chill about it all. I didn’t think it was bad when I was first diagnosed, sure I had headaches a lot, but I didn’t even know what it was. Now though, I can barely get out of bed even though laying down makes everything worse. I don’t want to lose my vision and lose the ability to actually start my life like a normal person. If I don’t get better, what would my purpose even be anymore? Sorry for the rant but I know you all understand, no one else in my life really does. Honestly those around me are getting fed up with how much I complain of headaches and especially of how much I sleep in a day. I don’t know what to do, I don’t want to do anything at all anymore at this point.

Hello, I was diagnosed today with iih due to my optician finding something abnormal yesterday. I went to the eye hospital and I had a CT scan and they confirmed the diagnosed of iih.The eye consultant only mentioned weight loss to me as its common with overweight women (im an overweight woman 🙃).

Im currently being treated for hypothyroidism and being investigated for pmos which makes it very hard for me to lose weight. I mentioned to the consultant that the only way for me to lose weight is to eat 900 and under calories, to which he replied my gp can help me lose weight and GLPs may be the best option. I also mentioned that the symptoms ive been experiencing have been happening 4 dress sizes lighter and it was just as bad maybe worse then.

I have a history with restrictive eating disorders and I dont feel like I can confidently lose a significant about of weight without slipping back into it.

I have been given no other option, its either lose weight or I risk going blind and im quite terrified. Im not opposed to losing weight and it is something id like to do but I feel like losing weight and blaming it on my weight cant be the only thing.

If anyone has been given any other advice that would be a great help and reassurance.

I was recently diagnosed with IIH and had 3 MRIs, a ton of blood work, and a lumbar puncture done. My neuro ophthalmologist went over all of my results at my follow up appointment a few weeks ago and said I had stenosis in the veins in my head (along with a lot of other things), as well as possibly Sarcoidosis based on my bloodwork (Seeing a rheumatologist about that soon). While the Diamox had made a small improvement to my eye pressure and overall optic nerve swelling, she has a referral to speak with a doctor about getting stents put in my noggin when I'm ready for that.

I'm all for getting the stents and being done with the Diamox(if you know, you know), but my question for people that have gotten them: Are you still able to go on fun rides and coasters at amusement parks? I enjoy going with my children and am usually the one who rides with them. Also, any negative impacts from getting the stents that would be good to know before hand? Any advice would be appreciated so I can better decide what I'd rather do. Thanks 😊

I feel like I’ve lost so much of what made me me. I can hardly keep up with those around me, I had to give up my dream job (atleast for now, I’m trying so hard to stay hopeful), and I’ve just become this angry, disheartened mess. Angry about how much of all of this is effecting me, that I can’t do as much as I’d like or used to do, that I have to base my activities around the severities of my symptoms on any given day. That I feel like no one around me is comprehending how devastated I am. That majority of my days revolve around appointments and blood tests now. Everyone around me is healthy and I’m so happy they are, but also so envious at times and feel alienated from them at times. That majority of people I’ve spoken to just always tell me to try and accept this, find peace with it, be happy I know partly what’s happening to me now, etc when I’m just not in the place to do that right now. I’m grieving. I’m viewed as negative if I express how heartbroken I am. if I’m not constantly the brave, inspiring, optimistic sick person then I make people uncomfortable, but sometimes I’m just so exhausted trying to hide how awful I feel. Most days I wish I could just give up.
I’ve been diagnosed with IIH, but specialists also have suspicions that I have myositis. Ontop of insomnia and bipolar 1.

Two months ago I started diamox. Two weeks ago I had to be admitted and given a lumbar puncture for the first time, which then had a leak and had to get a blood patch followed by more bed rest. My part time job I started a month prior began to cut my hours afterwards and management seemed to do a 180 on their attitude towards me, which is whatever I guess because I ended up having to quit anyway since connecting that all of my symptoms kept getting worse with working. Also worth adding, management blew up my phone while I was unconscious in the hospital repeatedly telling me to find coverage for my shifts which I found out is not legal in the state I’m in. My wife had to text them from my phone multiple times, repeating that I sent them a doctor’s note stating I have to go to the ER and physically can’t find coverage. I missed my one neuro ophthalmologist (only one specialist in my state) appointment that took forever to get into by being 10 minutes late because I was so dizzy and nauseous and struggled to locate which building of the multi-building hospital I had to go to so now I have to wait even longer. Which is my fault of course but just broke me.

I’m so tired. I feel like I’m failing at everything, I understand I may just be in the processing stage but it feels as though it’ll last forever. This level of exhaustion that never eases, this heavy weight in my chest constantly reminding me of the things I once loved so much being out of reach right now, not being able to show up for those I love as much as I’d like to, watching my wife taking on more while I’m stuck watching, and her getting mad when I try to push through, having to ask for help more than I ever used to have to, crying out of frustration whenever I have to slow down or stop whatever I’m trying to do when symptoms flare up.

I was supposed to move out of the US before all of these symptoms showed up, my family and I were so excited but my wife was too scared to move without knowing what was happening to me. So much of the money saved went to handling bills and expenses because I had to stop working and we ended up not being able to and now I can’t stop thinking about how I destroyed our dream.

not particularly looking for any advice just wanted to say that i’m starting diamox tomorrow for the first time and im very anxious! starting at 250mg twice a day and going up by 250 each week until im at 750mg. i’ve always had anxiety about starting new medication because of a bad experience years ago but i just really want these to work/not be too unpleasant side effect wise. how quickly did you guys notice side effects when starting? i read that they work very fast but what about side effects

So long story…but hang in there. Really desperate for some advice. I have low gfr and high creatinine. For those of you who aren’t in the medical field essentially means my kidneys are functioning poorly. This has been ongoing for as far back as I can see on my health portal (which is around the same time i was diagnosed with IIH).

On top of that, my blood gas ph and carbon dioxide are low when I’m on either diamox or Topamax, also both indicators my kidneys are functioning poorly. All of my bloodwork improves (though not back to 100%) when I’m not on diamox or Topamax.

I recently was trialled (after a very slow wean by decreasing 250mg daily once every 6 months) off meds and am having symptoms again. Im having trouble getting in contact with my neurologist but am wondering if anyone knows any other options for management besides Topamax or diamox i can talk to my dr about?? I am terrified to end up significantly damaging my kidneys.

Also wondering if anyone has any experience with restarting meds at the last dose that worked for you? This is my 4th trial off meds over a 6 year period and we’ve always restarted at 1000mg diamox twice daily, but i was doing well previously on 250mg once daily. Again will talk to my dr but wondering if anyone has experience with restarting at just the 250 daily that worked previously or if i should re start at a higher dose.

Thanks in advance

I had a lumbar puncture yesterday and as I was laying in the recovery I realised that for the first time in weeks I couldn't hear the ringing in my ears or feel the thrumming pressure. It was amazing and I hope it takes a while to come back.

Has anyone else experienced the same?

Hi all, I've posted here a few times...I'm 24yo, turning 25 in a couple of months, feeling like a shell of who I used to be. Idk if this post is the right place for this specifically so feel free to remove n I can go to a different community but um... I'm having a really hard time and I'm just looking for some support.

Let me make it clear I am NOT in crisis rn at all. Unfortunately this is just a slightly worse version of stuff I've endured my whole life so I can handle it. I am also safe at my bf's place for now.

I've been diagnosed with IIH for a few months now.

My parents...are a lot. They have a lot of issues. I really don't want to get into it all, but they're... abusive, in ways. Alcoholics, to name one issue. But they are all I have right now. I don't have a job, I can't work. I'm on a lot of meds & I depend on my dad financially. I can't walk much at all without getting so much head pressure I lose cognitive function (I feel stupid/dizzy/like I'm gonna pass out, takes 30+ minutes to return to normal). I can't bend down, I can't do basic chores, I can't stand for too long in the shower, it'll make me have the pressure really bad.

I have tried desperately to talk to my drs about it but my (now former) pcp has brushed it off without care and my neuro-ophthalmologist doesn't know nor is going to question further bc she's only there for my eyes. I'm trying to find a half decent pcp to try to figure out what's wrong—before my IIH stuff hit the fan, I've had SEVERAL ER doctors suggest I get POTS evaluations but my former pcp also brushed that off bc he said there's no standard test so it wasn't worth looking into. It's been super hard to find a pcp for anytime soon (got a well reviewed one for november).

I haven't been able to leave the house to do anything meaningful without extensive physical backlash for months until I recently rented a wheelchair for a comic con & was able to stay for hours.

I felt a little more normal again. I was excited.

My parents dislike the idea of me getting mobility aids.

I tried to have a civil discussion & it devolved quickly with them accusing me of not being appreciative enough for what they've done so far such as taking me to my dr's appointments, getting me a new bed (my old bed had springs and it was stabbing me/had made a hole, to which my mom blamed me for that happening—as if it's my fault for lying in bed too much while ill—and also denied that bed was a spring bed??), and cleaning my room recently for me after I haven't been able to clean it at all for months due to how sick I've gotten, which I did appreciate.

My dad used these things like ammo against me and I helplessly grasped at straws to try not to get mad. (I am also withdrawing from Topamax because it was making me enraged—my neuro ophthalmologist is aware but it's been several days so I have calmed down significantly, still I have done nothing but try to tell my family I'm not exactly at baseline but they don't care).

My dad was telling me I need to understand how hard this all is on THEM. But they aren't really there for me much at all? Yes they buy me things but I'm usually in my room, by myself, dealing with all my things alone. When I had the diamox pain/metabolic acidosis, I was in the hospital without them and they did not leave their fun camping trip to come to my side. They continued to enjoy their camping visit while rarely checking in on me as I was in the worst pain I've ever felt in my life.

But somehow I'm just not understanding enough. And somehow I'm selfish and rude and full of disrespect. And I don't know what it's like to be an adult actually. I'm basically an idiot, disrespectful kid that isn't grateful for anything, in their eyes. I just don't understand why they can be insane and have crazy arguments and be crazy but I can't be slightly out of line. I have always been forced to be perfect and I'm sick of it especially rn.

It was escalating a lot and I needed to leave because my mom was getting involved and she just gets incredibly mean because she's a mean, bitter woman. And I was right, because she looks at me and tells me,

"You know, [name], people with your condition have to WORK, I've seen it online. You should be grateful we aren't making you do that!"

And I stood there, staring at her, realizing that nothing I could ever try to communicate would ever make sense to them because they don't care. They think I'm choosing this in some way and they resent me deeply for it. They think I choose this like they choose to be alcoholics.

I told her plainly that I feel so unwell that if I was forced to work I'd rather, well, take a more drastic measure to avoid it altogether. I don't mean that I WANT to hurt myself, far from it. I just wanted her to understand how physically bad I feel and how impossible working sounds to me at this very moment.

She said I was sick in the head and threatened to take me to the mental hospital & then my dad started yelling about how disgusting I was or something and trying to physically intimidate me so I locked myself room. I had my boyfriend come over and take me to his place but that's a very temporary fix I can't stay here for long.

I feel horrible. Arguments take it out of me so much, and this is the 2nd argument I've had in a week with them, specifically my dad, who I used to think kinda cared more, but he is just a bitter, resentful dude who thinks I'm really ungrateful and probably undeserving of everything. Last argument he kind of threatened my housing.

They care more about their image and how much they're impacted than they care about me as a person.

I just don't know what to do anymore. I feel hopeless. I wish I had nicer family. I wish I didn't have to endure so much emotionally while I'm already going through so much physically. I have no one to support me aside from my bf. I used to be fully independent, I had my own apartment, my own career, I drove wherever, and now I'm here.

I want to live somewhere quiet. I want a break where it's peaceful. I don't want there to be arguing all the time because it makes me feel so sick. I don't want to argue anymore. I don't want to beg to be understood. I don't even know where to start.

I spoke to a social worker for a bit a while ago so I am going to try to reach out to her again. We'll see where that goes. I have a therapy appointment today online but its just an initial session. I'm really doing my best.

I’ve been having to call out of work the past few days because my head and eyes have been on fire and of course the next day my period started 🫩😂

so I’m wondering if anyone’s IIH flares up before/during/after your period? If so, what symptoms get worse or do you get anything new or different happen?!

Share anything! need to hear i’m not alone in this lol

Anyone experience intermittent zapping/pressure that feels different from their normal migraines?
I have chronic migraines and am under the care of neurology, but lately I’ve been experiencing something that feels very different from my usual migraines and I’m curious whether anyone here has experienced something similar.
It’s primarily on my right side and comes and goes. I get a strange zapping/shooting sensation and pressure around my right temple and at the base of my skull/upper neck. Sometimes the temple sensation seems completely random. It can disappear and then come back later rather than behaving like one continuous migraine attack.
I’ve already discussed my headaches with my doctors/neurology and have had imaging. I’ve also tried Botox, a nerve block, Toradol, heat, massage, neck exercises/stretches, Tylenol and ibuprofen. Tylenol and ibuprofen actually help quite a bit, but eventually the sensation comes back.
I also cannot take triptans, which limits some of my migraine treatment options.
One of the hardest parts is that I have health anxiety, so whenever the temple/base-of-skull sensation returns, my brain immediately goes to scary things like an aneurysm or brain bleed. It’s exhausting having that fear every time it happens.
This isn’t a sudden thunderclap or “worst headache of my life.” It’s an intermittent/recurrent sensation that has been happening over time and just feels very different from the migraines I’m familiar with.
For those who have chronic migraines, have you ever developed a completely different type of head pain like this? What was your experience with it, and did you eventually find something that helped?
Just looking to hear other people’s experiences while I continue working with my doctors — not looking for anyone to diagnose me.

Hi comrades, me again. I’m going to keep this short because my head hurts (🤪). Thank you so fucking much to everyone who commented on my post about GLP1. I sincerely appreciated everything you all said and your perspectives were invaluable to me. I love this sub so much. Seriously, the framing around seeing it as a means of symptomatic relief instead of weight loss was really helpful to me.

I decided to let er fuckin rip and see what happens. My first dose is later today. Baby, I’m ready to feel better!!! We’ll see what happens - wish me luck! 🍀

Hi all,

I’ve been diagnosed with IIH since 2020, and I’ve been in and out of remission. Unfortunately, weight does play a huge factor and whenever my weight fluctuates or goes up, I experience a flair up in symptoms. There are other things that trigger it too, though.

Anyway, I’ve been having the worst IIH headache for the past 10hrs and nothing is helping. I feel absolutely debilitated. It’s getting worse by the hour. Does anyone have a trick to help quiet down the headache?

It’s hurting my eyes, head, neck, and shoulder. I feel extremely nauseous. My head feels heavy.

I’ve tried to sleep but can’t. I’ve taken Advil and ondansetron. My husband gave me a head massage which helped distract from the pain, but as soon as it stopped it came back.

What do I do?? I can’t take it anymore. It hasn’t been this bad in years.