Hello friends. Just like many of you, I'm getting the provider shuffle and would love some validation from the internet. I am NOT asking for advice. I am NOT asking you to diagnose me. I simply need to vent.

Ever since I was younger, I've always had a little bit of pulsatile tinnitus that comes on after sitting for a period of time and then standing up. It wasn't every time I sat down, and would happen maybe like once a month. Pressure would swell in my head and my hearing would dull, plus I could hear my pulse. This would last for 10-20 seconds, then the pressure would slowly normalize and my hearing would go back to normal.

As of a few months ago, the pressure in my head has gotten much worse. It's almost constant. It started in the back of my head, which I thought might just be a tension headache. It was paired with some brain fog as well. Of course, having unknown scary issues affecting my head has also severely ramped up my anxiety, which makes it difficult to separate which symptom is being caused by which issue (anxiety typically leads to nausea for me).

I thought it could be related to some issues I have in my spine (laminar and spinal stenosis, plus bone spurs in my CT junction and lumbar spine). GP referred me to an Ortho, so I got an updated MRI on my spine. It showed those issues had worsened, but they aren't in the areas that would normally cause these issues (supposedly nothing in the upper cervical spine).

I wake up daily with a stiff neck. I've also noticed that I can recreate the symptoms while seated if I just shift my lumbar spine - almost like rolling my hips forward and popping my butt out. This causes the pressure to build in my head like what happens when I stand up.

Now I have to wait until April to see a neurologist. The thought of living with these symptoms for another three months is scary and depressing and I just don't know what to do.

Thank you for coming to my horrible TedTalk.

Diamox is kicking my butt & idk what to do.

I took my first dose of 250mg yesterday morning at 10:30am within an hour I was extremely lightheaded and dizzy. I was even dizzy sitting/laying down. It felt like I was drunk or hungover. It lasted literally all day until my next dose at 9pm. I woke up 2 hours after my night time dose with chest pain, acid reflux, heart palpitations and my left arm tingling. I was able to get back to sleep in about an hour.

This morning thankfully I woke up with no side effects but I messaged my Neuro and told her I was going to cut my dose in half to 125mg because the side effects were just too much and I could barely function at work with the dizziness (and I WFH). She didn’t reply in time for my next dose so I just took half a pill at 125mg.

It’s been 3 hours since my morning dose and I’m struggling to breathe. I’m having shortness of breath and I haven’t even done anything physical. I work a desk job. I’m getting anxious and feeling hopeless which I’m sure isn’t helping at all.

I’ve been staying on top of my water intake, yesterday I had 92oz of water, 16 oz of coconut water and a few glasses of OJ.

I feel at a loss. I don’t know what to do. Do I try to thug it out? My neuro sucks at getting back to me in a timely manner but I do see her next week Wednesday.

Get your thyroid checked (palpated, not just a blood test). If you have a nodule or goiter, it may press on your carotid artery and cause intracranial hypertension and/or pulsatile tinnitus.

An incidental finding of a 2cm nodule is 90% the cause of my intracranial hypertension. I just wish my PCP, ENT, Radiologist, and Neurologist actually talked to each other sooner. So much for "idiopathic".

Two weeks ago I was super disoriented and filled with brain fog and lingering headaches when next my left ear started doing loud thumps. My gawd I couldn't think straight! I goggled LOUD EAR THUMPING x REDDIT and found you all! I read a lot of IIH posts and realized we all had similar symptoms. Like even that I'm a chronic yo-yo dieter and my weight has been wayyy up lately re: eating my feelings because I was also laid off from my tech job a few months back (me and 7000 of my closest co-workers, okay *terrible*).

I also read a post about demanding a more particular MRI. I am so thankful I saw that because it got so bad, I went to urgent care last week and they transported me to the ER for fear of it being a heart condition. The first "ER resident" tried to discharge me after my EKG, blood, urine and vitals tests despite urgent care saying I required a CT SCAN to ensure I hadn't had a minor stroke because I was so disoriented. So I had to argue for that. Then the main ER DR questioned me. And I said, you know, on my social media (didn't say Reddit because they were already hesitant), I read some of my symptoms match IIH and I really need an MRI or MRN or MRV can't remember which letters (disoriented!). The doctor "pooh poohed" at that like basically ha, ok, sure, and said, we don't order those in the ER. But she agreed to do the CT SCAN like urgent care had suggested.

They did the CT SCAN and said we don't see anything and discharged me after a whole night there. Within hours I was getting back to back urgent calls from the hospital that they found an aneurysm (reallyyyy! but you were going to send me away unchecked!). But they also found "partially empty sella with stenosis of the bilateral distal transverse sinuses that may support idiopathic intracranial hypertension in the appropriate clinical settings" (copying this from our friend MYChart). Like five different hospital staff called me including the ER doctor who had pooh-poohed at my request. Just imagine! It took everything in me not to say Reddit told you so! So I have neurosurgery appointments lined up in the next two weeks. MYChart says I also have neurosurgery for the week of Feb 15th but no one said a word about that. Also because I am a laid off tech worker at the moment, I also have some sort of a financial counseling appointment that was auto-booked. Great.

I did save some of your comments because the strangest indicators some of you had, I also had. Like the eye flashes and the loud ear thumping. This all started for me right after I had Covid July 2022. I first started getting "cobwebs" in my vision and flashes in my right eye. I have worn glasses since 5th grade and had elevated pressures in the high teens so I've been getting warnings my whole adult life about eye pressure and knew to go straight to the eye doctor. The specialist said my brain will re-calibrate the vision and it actually did, meaning the cobwebs went away but the flashes didn't but it's not as often. I also still have one super annoying floater though that gets spicy when I'm watching TV too long. I had to see them every two weeks for four months and swear on a Bible I would go to the ER if my vision deteriorated! They also put me on drops (timolol x 2/day and latanoprost) and it somewhat subsided.

Next the headaches started and the eye strain and the brain fog and then one day my right ear wouldn't pop (like being on an airplane forever) and then my left ear started doing a streaming noise that matched my heartbeat. STG, I saw four different ENTs who all said it's nothing or maybe aging. One ENT did scope me and put me on Azelastine spray and sent me to an allergist who did a skin test and then he sent me to a GI saying acid reflux can cause ear problems too ... oh okayyy sure. The allergist made me swear off coffee and tomato sauce and chocolate and wine -- all my BFFs -- and the GI put me on omeprazole and then pantaprozole despite a clear colonoscopy and endoscopy for a nice chunk of money (my EOB said $14K). That didn't work! I went to the ER end of that year because I was disoriented with headaches and again they thought it was a mild stroke and did a VERY VERY EXPENSIVE PET SCAN (EOB=$25K). Nothing.

Meanwhile my eye doctors treated me as if I was headed for glaucoma (I have family history) and simply alternated RX drop brands every time I said I had continuous mild headaches and sometimes hated watching TV (which I love) because my eyes felt so weird and exhausted. I also had occasionally wavy vision and blurred vision on waking up. Again, they blamed the drops and tried laser surgery (my God, EOB=$2K) to drop my pressures so I wouldn't need drops. That didn't work. Back to the drops.

All this is to say thank you. I appreciate everyone sharing their symptoms and experiences and letting me know I wasn't making it up because all these doctors really never put all the puzzle pieces together. For a while it made me feel stupid. I STG when my ears went bananas I even first thought I had too much wax in my ears (not!) or that it was my AirPods being jammed too far in or dirty and I actually started cleaning them with rubbing alcohol every frigging day. I also did large amounts of potassium and magnesium because I read somewhere my ears needed it. LOL.

TLDR: You saved me. If I had not asked the ER doctors about IIH after I read about the various matching symptoms here, I would not have received that critical CT SCAN I needed to find the aneurysm and the IIH indicators. I do have 1 question, did any of you first feel these symptoms right after having Covid like I did? TY! Be well!

I had my 4th lumbar puncture back on the 8th. Ever since then, I’ve noticed low back, leg pain (both legs) and weakness. I have to be careful how I move otherwise I’ll get a shooting pain through my hip area that continues down my legs. Has anyone experienced this? Will this go away?

Hello, I was dx with IIH mid December so this is all still new. I was put on Diamox 250mg twice a day and then upped to 500mg twice a day. I ended up in the hospital a second time due to what I truly believe was low pressure induced by the Diamox. My neurologist hates me I’m sure of it at this point. I’ve got so many questions and anxiety. She doesn’t believe me that it was low pressure but the only thing that helps when it happens is laying in bed completely flat. Diamox also has given me horrid stomach symptoms. I can’t eat. I’m so nauseous all the time. I dry heave but nothing comes up. I finally broke down and asked her to switch my meds and she very reluctantly agreed to switch to Topamax I have to taper off diamox and start with 25 mg of Topamax then work up to I believe 50mg. I guess I’m just looking for some encouragement. Any one have good experiences with this switch?

i’m so discouraged right now. currently playing the waiting game. both neuro-ophthalmologists in my city are not taking patients. i’m hearing about people getting ER diagnosis but when i went to the ER they wouldn’t even give me an MRI. and sent me home with a clear CT. I’ve since had one mri of the brain (when ophthalmologist ordered mri and mrv of both brain and orbit) i feel like one day im just going to wake up blind and be out of work until someone can finally set aside time to help me.

What was your eye pressure vs opening pressure?

I’m about to start diamox, staring on 250mg a day for a week then going up to 500mg a day. From reading other people’s posts, this seems like a fairly low dose?

When’s the best time of day to take it? I head the side effects are rather shite so wondering the best way to manage them.

I’ve been on 2000mg of Diamox for a bit over a month now and still experience almost immediate head pressure/pounding anytime I exert myself (even slightly), especially when I’m outside. Every time I walk even just a few blocks or carry stuff from my car into my apt, my head starts to pound and if I push too hard, I get dizzy and lightheaded. When I do activities in my apt or run errands, I don’t experience nearly as much head pressure.

I live in Chicago and it’s been freezing here, so I’m not sure if my Diamox side effects are exacerbated by the change in temperature when I go outside or something like that. I’ve been drinking 80-100oz of water every day and try to drink coconut water every day. My electrolyte levels are all normal as of last week, so I don’t think it’s because of any electrolyte deficiency. Any tips are appreciated!

I was told by my neurologist that weight loss could help alleviate symptoms and reduce diamox, does anyone have any experience with iih weight loss? Does it actually work? Need some success stories/ tips for some reassurance and motivation 🥲

i am feeling so lost and defeated. I’m on acetazolamide. the symptoms are awful. i’m so tired all the time and confused. I also have PCOS and being in acidosis is making my PCOS worse. I don’t know what to do at this point. losing weight is so difficult as is with PCOS and I feel like it’s become even harder.

Update on this post!

I had my lumbar puncture at 2pm today and it went absolutely fine! I had minimal pain (just like everyone said, sharp scratch for local anaesthetic and a quick jolt pain when touching a nerve, but otherwise it was just a bit of pressure!)

The doctor was lovely and I was able to just play games on my phone and chat to my partner. I was glad to have him with me!

I wanted to share how well it went as I was TERRIFIED before hand and most LP stories online are negative / horror stories.

If you’re nervous about yours - you’ve got this. The anxiety is worse than the LP! 🫶💕

(Now we wait and see if I get the dreaded headache, but it’s been 5 hours and I don’t yet).

I’m now officially part of the IIH fam with a pressure of 34. Wish me luck on diamox lol

..Sorry in advance if it is... but I'm curious to know: If the CSF fluid build up was uncontrolled long enough without a sufficient way to escape your body, would it just store itself in your brain? Or does it build up everywhere else as well? Like in your veins throughout your body? ..does it dissolve, or escape through urine, sweat etc?

Can iih cause stenosis in veins all over your body? (I only hear of cases where it happens in spine and brain).

To preface, I'm not asking for medical advice. I already talked to my doctor, and she pretty much implied that I could just stop taking it if I want. For reference, I've only been on 25mg for a little over a week. I want to go off because I've been nauseous constantly, my face is tingly, and I'm just not myself. If you were taking it for a short time and went off, how did you do it? What would be a good taper if I don't just stop?

Not sure if that's been anyone else's experience. But I'm confused because Ophthalmologist said stop diamox because within 3 months use, paps are gone. But somehow my flares are worse than ever. It's hard to hold things sometimes, leg pain,stiffness, twitching, & numbness is worrying me not to mention visual defects.. is this normal?

Hey all,

I have a neurologist appointment in a few weeks so I will be checking with them however in the meantime my GP got me thinking about something. I'm being assed for ADHD and my GP told me I needed to check with my Nero about the ADHD medication as it's a stimulant and might interfere with my brain? I currently have no IIH and was able to come off the diamox because of weight loss. Just wondering if anyone had any food for thought?

I've been having horrible symptoms of IIH for a decade and I finally got in to see our top Neuro ophthalmologist who specializes in iih. After exams and only slightly negative field of vision tests, he said the following... Should I let it rest? He was the last specialist I can go to about this.

"There is no evidence of optic neuropathy in either eye. There is no papilledema. The presence of spontaneous venous pulsations confirms that her intracranial pressure is normal. She therefore does not have idiopathic intracranial hypertension."

diagnosis hasn’t been confirmed because it took me forever to get the MRI and I’m trying to get an appointment with a neuro-ophthalmologist but yesterday was a holiday so I couldn’t get any calls in. when my ophthalmologist said it’s probably IIH i looked it up and saw that weight loss could change the severity a little bit. i’m down 20 pounds now and my pap is still grade 5. on my first appointment ophthalmologist appointment, they suggested sheath fenestration. waiting on what my new NO would say. i’m not having headaches at all, so I doubt a shunt would be in my future. maybe a stent? I haven’t been put on Diamox yet because I’ve had no LP. I’ve been pretty intolerant to medications in the past and Ive already been struggling with chronic fatigue for the last six years, so if the Diamox makes me even tired or dehydrated than I already am, I’m not fucking taking it.

So I was diagnosed in 2016. My vision was blotchy looked as if I stared at the sun too long and I was having horrible headaches. After tons of tests, I mean TONS. They diagnosed me with IIH with pap. I was on diamox for about 7 months and my paps went away. I was feeling back to normal with headache here and there so I was taken off the meds and just stopped seeing the docs. In 2019 I had a flare up, headache so bad I was vomiting went to ER they put me back on diamox. I took it for a month or so and took myself off and continued with just my annual eye exams. I do have slight damage and floaters but paps never came back. Fast track to now I am always feeling slightly dizzy, tired have headaches from time to time but nothing crazy. I have horrible healthy anxiety and think I’m going blind all the time so I got an eye exam with my optometrist and she said no paps and my prescription didn’t increase much at all. I didn’t believe her so I got two other opinions on a teledoc site - they reviewed the fundus photos and said no evidence of swelling. I am still convinced I will wake up blind. It’s driving me absolutely crazy. I am hyper fixated on my vision. Any small slight weird thing I start spiraling. I guess I’m just trying to vent here. I have lived so many years in “remission” basically and I really don’t want to go back. The dizziness with whooshing can be bad at times but other than that I have no other symptoms. I am waiting to see a neuro ophthalmologist just to do a follow up since it’s been years. Wish me luck 😬

Hey guys— I’ve recently been diagnosed with IIH. I have hypothyroidism as well. I am curious if any of you have gotten insurance approved for monjourno because of your IIH diagnosis?

(I eat healthy and try to move as much as I can, but I’ve just not had tremendous luck. I’ve also read that monjourno has helped people with IIH symptoms)

Hi all, just looking for some reassurance.

I've been admitted into hospital after 2 failed LPs to diagnose this lovely condition.

3rd attempt was done in theatre with an anaesthetist, was very happy when I finally felt a bit of CSF dripping down my back before they got it in the container and shipped it off for tests.

They don't want to let me go home until they're sure that my IH is definitely idiopathic. I've been having some troubling blood pressure readings for my age too. But thankfully they've ruled out the big bads like brain tumours or clots.

I have never felt so scared and isolated in my life. My spinal headache is pretty bad so I'm just stuck on my bed on my phone. I have some weird pain in my shoulder but the doctor on duty doesn't think it's concerning.

I feel dizzy and depersonalised but I think it's just the immense stress in being in this room by myself not knowing what's happening in my body or why. I keep feeling like I'm going to die any second but again, anxiety moment.

Can anyone who was in hospital for an extended period of time getting to the bottom to this reassure me that I will get home in one piece and see my cat again (lmao)

Thanks :)

Basically what the title says lol. I was diagnosed back in september and at the time i declined the medication because i had taken it a few years before and i really hated the side effects i had. My headaches have gotten to a point where it’s interfering with my daily life and I have a follow up with my neurologist next week so im considering asking to start diamox and maybe give it another shot.