r/iih

After 2 weeks of FIGHTING the system and being told every step of the way I was crazy, enduring a completely unnecessary psychiatric unit stay for these issues, and being told "it's anxiety" every damn day, I'm finally figuring out what's going on.

I'm in one of the best academic hospitals in the country, and just
got results from a CTV scan today and it confirmed the following:

-Moderate narrowing of the distal aspect of the nondominant left transverse sinus..

-Transverse and sigmoid sinuses: Nondominant left transverse sinus, with moderate distal narrowing immediately distal to the confluence with vein of Labbe..

My lumbar puncture opening pressure was 27

So I'm coming to terms with the fact that I was never crazy....I was told these issues were in my head when in fact the symptoms and issues were LITERALLY IN MY HEAD....

The relief I feel is indescribable but I'm incredibly frustrated that I got kicked to the curb, dismissed and gaslit each step of the way.

New to this as I was just diagnosed last week. I had be having double vision and thought I just needed new glasses.
As soon as the doctor saw my optical nerve he told me to not even stop at home and just go directly to the ER at Duke University.
As freaking terrible and terrifying it all was within a few hours I had a diagnosis, treatment plan and an entire team of doctors and specialists on my side.
My LP showed that my pressure was 55 and some of the smaller veins in my eyes had a ready ruptured. I had no idea but I was very close to permanently loosing my vision.
It really made me realize how lucky I am to live near such an amazing, fast acting medical community which is NOT AT ALL like where I grew up in rural West Virginia. The doctors there were good people and did what they could but resources were limited to say the least.
It also made me wonder if anyone else has moved just to be closer to quality medicine. Even as home prices here rise and every year my tax bill goes up I don’t think after this I could ever leave.

Wondering if anyone is successfully taking HRT for perimenopause.

Looks like GLP1s are perhaps not the best thing after all. Just read this morning about the lawsuits against some of the GLP1 makers. Given that vision loss is something we with IIH are trying to avoid, the news that Glp1s can cause vision loss was a bit disturbing to me.

I had been thinking about asking the Neuro-opthomologist about possibly going on one as i have only lost 24lbs in the last 6 months and seem to have stalled, but not so sure now given that IIH can cause vision loss, my previous genetic eye disease will cause complete blindness sometime in the next 5-20 years. Not sure I want to throw another vision loss potential into the mix lol.

Do what you feel is best for you, but if you are interested in finding out more, put "ozempic lawsuit" into Google.

I saw an IIH/VSS expert who does venous sinus stenting but cited a high recurrence rate of either return of high pressure symptoms or new stenosis occurring in a different location. I know a lot of people are quick to post their 2 to 4 week postop follow up, but looking for people to share their long-term stent outcomes. Thanks!

When I take Diamox, for the next 3 hours it feels like my stomach is really heating up and I get heartburn.

I take the medication with a fruit or small snack, but do you guys take it with a more substantial meal?

Is there a specific doctor I should see regarding getting another medication to protect my stomach from Diamox?

I was diagnosed with chronic migraine in 2018 and IIH in 2024. I have tried every non invasive medical option when my headache specialist sent me for an MRV. They found a narrowed vein and I was referred to nuero vascular surgeon.

the plan was to do the angiogram and if my pressure was high enough we would proceed with the stent the same day.

they ended up intubating me and giving me three stents. I woke up with head pain and pain at the incision site. my vision has been blurry, my pain has been mild compared to my laid before the surgery, and get tired very easily.

my headache specialist has assured me that all of this is normal but I am wondering how long it will last. I have 4 weeks off work and so far I have been on total bed rest.

has anyone else experienced these symptoms?

Hello!! I am getting a lumbar on july 9th and want to get my hair done july 12th, everything I've looked up says that this would be okay but i want to know if people who have been diagnosed longer and have more experience with this condition could give me some advice on if this is a good idea.

Update : i have rescheduled the hair appointment to the 7th of july!!! Thank you so much for the advice!!

Am I the only one that notice an increase of symptoms in summer ? Like an increase of the icp ? I’m so debilitated compared to winter.

So, I finally got out of that "oh god, everything is different, everything is bad, I'm very scared" spot I was in. And I decided to got outside, finally-
And it was not bad! I wore a T shirt (and my trusty fun swim trunks) and a hat, and I lathered on sunscreen, and I brought a bunch of water. I opted to not tube, but instead sit in the creek in a shady part, and it didn't feel horrible! I felt okay after, and I had fun, and I got a tiny bit of sunburn later (because I went outside in a tank top after with no sunscreen to chat with my mom) but even then I only got a minor sunburn! The biggest road block in that was re-explaining to my mom (who we were going to the creek with) that I had taken all the necessary preparations to be safe at the creek so we were good to go. But most importantly, it was fun and it was one of the few times since I got diagnosed that I didn't feel like my world was ending.

Heeft iemand saffraan water gedronken en baat gehad bij verbeteren van zicht? Of last gehad van side effects? Ik gebruik nog 1250 mg diamox en laatste keer was mn openingsdruk 23.

Starting in August of 2024 I started having neurological symptoms that just made no sense. No neurologists could figure out what was wrong leading to misdiagnoses of psychological problems and attempts at pushing diagnoses like FND on me. Eventually I met a general neurologist who agreed to a lumbar puncture, and he found my opening pressure was 30. He explained anything over 20 was considered borderline high, and anything over 25 was considered severely high and for sure IIH. He also discussed how almost all my symptoms were typically symptoms of IIH and matched the puzzle pieces. He started me on 250mg of diamox once a day and 100mg of topimax twice a day right away. He then referred me to neuro-ophthalmology to get better IIH care and have my vision issues checked out since I was having vision issues. The medicine seemed to work a little bit but not much during the 4 months waiting for neuro-ophthalmology. I was getting frustrated and wondering if needed a higher dosage, but general neurology weirdly enough wouldn’t mess with the dosage until I see neuro-ophthalmology. I finally get in to see this guy and he agrees with the diagnosis. He talks about how he review all my MRIs and I had empty sella in all of them. He runs a lot of eye tests and discussed how I have “residual water markers” on my eyes “which means that at one point” I had “high papilledema” and that they “left small damage on my eyes”. He discusses how I even still have grade 1 papilledemas. He also diagnoses me with IIH. I’m like cool, and start mentioning that I feel I might need higher dosage of medicine because I keep having black out moments with my eyes… and his whole domineer changes. He starts discussing how 30 is considered only “borderline high” and that he has “patients who are at 60”. He then tells me that with “only grade 1 papilledemas” that my “case is considered only mild” to “his standards” and that “I shouldn’t need medicine because my symptoms shouldn’t be severe”. I feel caught off guard and start telling him with the general neurologist said. The neuro-ophtamologist kinda rolls his eyes and insists he “is much more knowledgeable in IIH then the general neurologist” and tells me I need to see a headache specialist because he feels like my IIH caused headaches are actually “complex migraines” and that all these IIH symptoms are are “something else entirely”. He takes me off my diamox entirely, and then cuts my topimax in half and says he will only put me back on medicine if my “papilledemas show me I need it” and sends me on my way very confused with a 3 month follow up. At this point I say screw it and do my own research where it’s suggesting every thing that he is saying is a load of belong and there is even people with IIH who don’t get papilledemas at all and this guy is about to ruin my life probably. He does order a MRV which comes back positive for “mild bilateral narrowing of the junction of the sigmoid and transverse”. Now I learned all narrowing of the veins for people with IIH should be referred to a neurointerventionalist to have pressure gradiented as just because it’s described as mild narrowing doesn’t mean the pressure isn’t build up and it’s actually not mild. So I message him asking if he will be referring me to a neurointerventionalist to have the narrowed vein looked at. He said it was not necessary as “Eveyone with IIH has bilateral narrowing veins” and that “it’s a normal common finding and doesn’t require treatment”. I am like ??? Wth ????

After this happens my general neurologist suddenly drops me and says I don’t need to be under his care anymore because “he isn’t specialized in IIH like a neuro-ophthalmologist is”. I feel completely confused about this too. Keep in mind they both work within the same university hospital so idk if they like said something to each other or what happened. So I’m left with no neuro care what so over for 3 months. As these 3 months go on my symptoms return and worsen. I’m talking the worst neck and shoulder pain of my life. The worst headaches. I pay out of pocket for a headache specialist as the referred headache specialist said it will be over a year to get in. She’s been doing this for over 25+ years and clocks immediately that I’m having IIH caused headaches. She continues prescribing my current dosage of topirimate and adds 25mg of topirimate to help with the headaches but I don’t notice much of a difference. Eventually I find myself in the hospital after a god awful pressure like headache happens and causes the same pain in my neck and shoulders. Then the next day comes around and the left side of my face goes numb, the eye feels like it’s gonna pop out my head (but both eyes hurt awfully bad), I can hear th heart beat in my left ear and my ear is muffled, it’s painful down the front of my neck now too on the left side only, and now I’m getting sharp pain down the side.

I’ve been through to a few ER centers and they keep just ruling out stroke and TIA and going idk. Did get admitted at one er place who ignored me when I told them about my IIH diagnosis, I think because they pulled the record from the neuro-ophthalmologist at the university hospital and it’s literally like “yeah I think she has a mild case of it but not severe enough to cause severe symptoms”. They eventually ran out of time with the insurance company and tried to say it was a hemiplagic migraine and should “clear up in a few days” and it did not clear up in a few days…. It’s been 4 weeks and no improvement. In fact the pain is worsening. The hospitals fid acknowledge papillledemas though and did seem confused why I was not on medicine so they gave me diamox and topimax because they’re saying I should be on medicine. I have a potential second opinion with a neuro-ophthalmologist recommended in a IIH group but I’m on his waiting list right now unfortunately. I also have an appointment with a neurointerventionalist on August 11th which I got by asking for a second opinion and basically begging them for help. I’m not sure if this was the move but the ERs are no longer doing anything but giving me migraine cocktails (which are ineffective) and phoning in like 5 narcotics and telling me to see “my pcp” which works for the same university and won’t refer me outside the university. I’m in the process of looking for another pcp but it takes fine.

What do you guys think? IIH related?

So here I am almost 3 months after my initial diagnosis of IIH. I’m at the hospital, with dizziness, blurred vision, sensitivity and head pressure. The same hospital that told me in an ER visit that I had IIH is now (after three days of being in the hospital) telling me I in fact do not have IIH. Had an LP done for the first time yesterday & the opening pressure was 20 and closing was 12. Everything in my scans MRI/MRV/ANGIO/CT all came back “clear”. I am so frustrated. I have been taking Diamox this whole time with awful side effects. I have restricted my sodium intake per the dr this whole time also causing it’s own issues. And now I’m back at square one. Been off the Diamox for three days so withdrawing slightly. And nobody knows why I feel the way I do. This all started with hearing loss/pulsate tinnitus/ pressure in my frontal lobe and eyes/ neck and shoulder tightness. I have no papilladema.

Mixed emotions as I am grateful I don’t have IIH nor have to take that poison medicine anymore but I am so upset I’m starting all over and don’t know what it “wrong” with me. For reference my scans three months ago said partially empty sella, prominent meckels cave,flattened pituitary gland w/ a smalll cyst. Now they’re saying it’s ALL CLEAR? like what?? Why do I still feel this way? Anyone ever experience this?

I’ll be leaving here with a referral to ENT. Because Neuro has signed me off and said nothing neurological is wrong and someone slapped IIH on me because I’m an overweight woman who happened to have a headache (because my dr told me to INCREASE sodium thinking I had POTS @ the time) and in my mid 30s. 😡

Edit to add: I have only actively been taking Diamox for about two months. Low dose 250mg x 2 a day. Hadn’t had it since Wednesday morning LP was done Friday afternoon.

I've been on Topimax now since May. I'm on 100mg now and I know the numbness/tingling won't go away but is there anything that can help the painful pins and needles in my heels and toes (the last two specifically). My hands and face/mouth don't bother me as much but the fact that it's happening on and off all day long is just getting to be so much knowing I'll more than likely be on a form of these meds for years 😭

Diagnosed Oct 24 through LP, CT and paps. In Feb this year paps were grade 3. Just been to my optho-neurologist the swelling has gone. He couldn’t believe it. No damage has been done.

When I went in Feb he told me to lose weight. My BMI was 38 and he told me if you don’t eat between 7pm and 7 am the weight would fly off. I found this highly offensive as a middle aged woman (you know our weight never just flies off). If it did I wouldn’t have been this heavy) I hated diamox and couldn’t take topiramate. I was put on laxis. Didn’t want to take that either so I didn’t and instead of all that I went on mounjaro. I’ve lost 20 kg.

Recently had my diamox upped from 250mg 4x a day to 6x a day and added amatriptyline

And suddenly my life is over, I cannot do my job, or my side hobby, showering is a chore, anything that requires using my hands is a chore bcos the pain is causing me to stop constantly, even licking an Icecream/lolly caused me pain (in jaw/under chin).

Don’t get me wrong I had these aches before on the 4 tablets but now it’s constant. I feel so disabled, yet not because my brain feels the best it ever has. It’s so tough because as a chef I’m struggling. I have a feeling I need to go on long term sick whilst I look for a less physical job but also I literally trained so hard for this career, I was about to start my own business in this career and now all I want to do is cry all the time bcos I can’t do it anymore

I don’t really know why I’m posting this. Maybe I just need to know I’m not alone.
When I was 18, I moved from Ireland to Australia. I was backpacking, travelling, making friends, and genuinely living the life I’d always wanted. I was around 50kg, active, fit, healthy, and had a great social life. My days were spent at the beach, going out with friends, and enjoying the freedom of being young.
That Christmas, only a few months after moving, I got meningitis.
I recovered, and by April I noticed I’d put on a little weight. It was only a kilogram or two, so I didn’t think much of it. I blamed eating out more, drinking more, and enjoying myself.
In May, I flew home to Ireland for a family holiday. Between weddings, parties, and seeing everyone again, I realised I didn’t actually want to go back to Australia. Staying home with family and eventually moving in with my then long-distance boyfriend felt like the right choice.
Then July came.
My family went away on holiday, and every single day I had a headache. I never mentioned it because I didn’t want to ruin the trip. I’d go to bed with the headache and wake up with the exact same one. My face had become really swollen too, but I convinced myself it was just the heat.
When I got home, I went straight back to work.
By August, the headaches were every single day. I had an excuse for all of them. Maybe it was vaping. Maybe I wasn’t drinking enough water. Maybe it was the 5 a.m. starts. Maybe I was tired. Maybe I needed a stronger glasses prescription.
Then one day after work, I got scared.
I’d had ripples in my vision all day and was avoiding making eye contact with customers because I couldn’t focus properly. Driving home on a narrow country road, I saw what I thought were two tractors coming towards me. Then I realised there was only one.
I had double vision.
I pulled over, drank some water, rolled down the window, hoping it would pass, and somehow drove home.
The first thing I did was tell my mum.
After a bit of negotiating, we agreed I’d go to Specsavers to get my eyes checked before going anywhere else. During the eye scan, they found swelling on both of my optic nerves.
The optometrist told me to go straight to the Emergency Department and had already sent my details to the Eye and Ear Hospital.
At the Eye and Ear, they repeated the scans before telling me I needed to go immediately to Tallaght University Hospital.
That’s when I knew this wasn’t just headaches anymore.
That’s when I was diagnosed with Idiopathic Intracranial Hypertension (IIH).
Fast forward a few years, and my life couldn’t be more different.
I’m now 86kg despite trying everything I can to lose weight. I know weight and IIH have a complicated relationship, but it’s heartbreaking watching your body become something you don’t recognise. My confidence is gone.
I’ve tried every medication available through my neurologist and ophthalmologist , but I either don’t respond to them or can’t tolerate the side effects. A shunt isn’t considered an option for me.
The biggest loss hasn’t even been my health,It’s my life.
My social circle has become tiny because I can’t keep up with the drinking culture or late nights anymore. So many days are simply unmanageable. I spend so much of my life cancelling plans, recovering, or just trying to get through the day without my head feeling like it’s going to explode.
Sometimes I think about the 18-year-old who moved across the world, and I barely recognise her. She was carefree, adventurous, confident, and full of plans. I feel like IIH stole that person from me.
I’m exhausted. I’m grieving the life I thought I’d have, while trying to accept the one I do have.
If you’ve made it this far, thank you for reading.
If anyone else has IIH as a young person and has felt like they’ve lost themselves, I’d really love to hear from you. I feel incredibly alone in this.

Estou em processo de diagnostico e demorei muito tempo pra fazer meus exames porque ninguém da minha familia acredita que eu tenho isso. Meus exames de imagem são só no domingo, mas hoje fui na oftalmologista e ela disse que sim, eu pareço ter um papiladema pois meu nervo óptico está borrado (3 meses atras eu não tinha nada). FINALMENTE agora acreditam em mim mas eu to com muito medo de perder minha visão do nada, ela está cada dia mais embaçada e fico desesperada de acordar um dia cega. Vcs acham que tudo bem esperar até o dia 10 de julho (que tenho retorno com meu neuro)? Alguém aqui já ficou cego do nada? Estou muito nervosa com isso e que não tenha mais solução por ter demorado demais😭

Okay so, does having IIH somehow allow you to defy the laws of physics? I have been doing all the things to drop the weight, I should be down AT LEAST 25 pounds by now but I am down…. 5.

I know how to drop weight. The only thing that has changed here is now having IIH.

I feel like I am going nuts, I am in a massive deficit now and the needle is still not moving. It bas been months and I am starting to get real frustrated.

Anyone else have this issue?

I had a little success with intermittent fasting, might try it again. Feel like I have to go to extremes just to get a little weight off. 😭

Hi there!

I had an eye exam done yesterday and was told my optic nerves are enlarged on both of my eyes. I am being referred to neurology. I freaked out and went to the ER today and they did a CT and it was normal. They were going to do a LP and MRI but wanted to keep my overnight and I was not ready/prepared for that. I have reached out to my PCP and am currently waiting on a call back.

I did read that this disease is most common in women of childbearing age who are overweight... that is me. I am almost 39 and 200 lbs at 5'6. If I lost weight, could that put the IIH in remission or no? Google says it can but I'm assuming if it were that easy, there wouldn't be 19k members in this thread. I am absolutely terrified reading some of your posts. Knowing that I will have to get a LP and could get a post-dural headache or that I may have to be put on this medicine that makes me feel horrible.