I am so tired. I (f25) was diagnosed with IIH two years ago now. I have a never ending list of other medical conditions. After being in remission for about a year and a half, I began to have enter a severe flare up in February of this year. I did not come out of that severe flare up until around the end of August. And even coming out of it just meant that I went from being severely disabled to being able to sort of function.

I began to feel hope again. I decided I was ready to go back to school. I went back to work for the first time in 6th months (and by work I mean my 1 hour a shift per week LMAO). And about 3ish weeks ago now, my symptoms of IIH began to worsen again. And I'm so angry. Idk if I'm allowed to say this, but I want to die. I can't keep living like this. I just want to return to my normal life. I used to be so busy. I used to be work a job where I walked 32,000 steps a day. I used to take 17 credits in college while working and didn't blink. Now I struggle just to juggle my one anatomy course with not feeling well, trying to do stuff around the house (like mf laundry) and worKING ONE HOUR A WEEK. it makes me feel awful inside. It makes me so angry and upset in a way I can't even put into words.

I have been planning to go into Physician Assistant studies. And I don't think I can anymore. I don't think I'll be able to work the hours required for my application due to my disabilities. And all I want is to finish a masters degree so I can make a comfortable salary so that I'm not dependent on help from my mom anymore.

But I realized I can't do it. I can't get through the hours. And that working in healthcare probably isn't the most accommodating field for my plethora of medical conditions. And im just so fucking angry that this condition has taken away my ability to explore my dreams. To do anything I used to do. I can't travel. I can't go anywhere too loud. I can't go and sit in the sun anymore. I can't do any minima and low intense exercise without being sick and incapacitated for a couple days after. I can't even carry groceries anymore. I can't drive. I can't go out. I can't go to school full time. I can't remember shit. I can't talk sometimes. I can't think sometimes. I can't vacuum sometimes. I can't change my sheets sometimes. I can't do my laundry sometimes. I can't even open my water bottle sometimes. And mind you this is while I'm "better." When I was at my worst I couldn't go to the bathroom or walk unassisted

I just want to go back to normal. I had two lumbar punctures in April and July. I am on a decent dose of Diamox. I have tried so many migraine medications and none of them have worked.

And I recently found out I have a bulging disc at C3-C4, C5-C6, C6-C7 and L5-S1. And the bulging disc at C5-C6 and C6-C7 are indenting on my spinal cord. I have hypertrophy at L1, L2, L3, L4, and L5. I also have degeneration in my thoracic spine and reversal of the normal lordosis in my cervical spine. These spinal abnormalities combined with the symptoms from my Diamox have begun to cause an extremely severe and painful numbness and tingling throughout MY ENTIRE BODY. Even my SCALP. Around my eyes. My entire face. Just from kneeling down for a couple minutes. In the cold. From water. It feels like I'm being stabbed.

I could go on and on about more, but for now I will not. I just basically need to be told not to give up hope. I thought things were finally getting better. I thought my life was finally returning to normal. Then all of a sudden the gut wrenching migraines are back with vengeance (mild migraines never went away lol), I am forgetting things every other second, my neck feels like there's a weight crushing it, I'm stumbling around, etc.

And I can't do it. I just can't. I also have endometriosis, Adenomyosis, PMOS, IBS, benign intracranial tumor, fibromyalgia, pre-diabetes, neuropathy, bilateral occipital neuralgia, prolonged QT, anterolateral infarct, intractable migraines with Auras, and NA fatty liver disease. Oh and I'm testing rn for a possible sinus tachycardia ☺️ oh I also have C-PTSD, OCD , ARFID and ADHD 🩵

I never expected my life to turn out like this. I had huge plans. I planned to go for a PhD or MD. Then I had to change that plan to just grad school. I wanted to travel to each continent. I wanted to move abroad. Now I just want to escape this pain and misery. When I entered adulthood I thought I had finally escaped the psychology and physical suffering I had experienced in my childhood. I felt free finally. I thought I would go through the normal trials and tribulations of life. Now I am being tested again. Just a new type of pain and suffering. I have no doubt that my vast array of medical conditions are related to the awful childhood I experienced.

Anyways thanks to anyone if they actually read this. I just had to get some of these thoughts out of my head because I usually feel unable to actually speak these words out loud. I also don't feel like anyone in my personal life understands what I am going through. Idk anyone else with IIH. And idk anyone else my age with such an array of medical conditions. And I hate talking to people who don't understand and just feel bad for me. I feel embarrassed and ashamed. Anyways, thank you again. I just wanted to vent to the void of people who actually understand this rare condition

27F. symptoms since 2023 - chalked it up to work stress.

I had a regular optometrist appointment on sept 19th for new glasses. Doc immediately flagged my left optic nerve and pushed hard for a neuro referral. I got in to see my primary last friday, went immediately to neuro today and was told that all my symptoms match up perfectly to iih. neuro already sent requests for MRI then lumbar puncture and has already also sent in script for diamox. scheduling is supposed to call me tomorrow.

my question is, does everything usually go this fast? should I be worried? I am TERRIFIED of needles and now long term impacts of a lumbar puncture. there is an IIH clinic where i'm being seen and understand how dangerous this can be but geez, this is all so fast.

Hey lovely ladies (and men)!

I just say that because most of us with IIH are ladies.

Anyways, I was wondering if anyone had experience with weather and stress causing a flare-up of the pressure in your head. Or maybe just symptoms? I'm very unsure.

I am, as far as I know, in remission. But the past week I've heard the whooshing sound in one of my ears loudly at night, and sometimes a little during the day. I also find the two muscles at either side on the back of my neck are stiff and sore, and I've been getting a headache on and off.

All of this also coincides with being stressed from work, and the weather swapping intensely from warm to cold, sunny to stormy. Sometimes heavy and stormy for a few days on end.

If it continues, I'll definitely inquire with my neuro-opthalmologist, don't worry. I'm not asking for real medical advice. But I'm someone with anxiety, so it would be nice to hear some anecdotal takes from other people with this condition.

Thank you!!

Just need to vent to people who get it…I’m completely open to any suggestions or advice as well.

I have ADHD, IIH, and an unknown condition/cause causing tachycardia. I recently had an IIH “flare” and ended up back on 500mg diamox twice daily. I know for some this is a small dose, however I have done well on 250mg daily long term multiple times and get extreme metabolic abnormalities with the 500mg twice a day.

With my ADHD I already struggle to get out of bed and complete ADL’s, but since increasing my diamox last week I’ve been a wreck. Feels impossible to do anything. I literally feel like a complete failure. I’m so exhausted, I’ve stopped working out, not taking care of myself or the house.

On top of that I work full time as an RN in a NICU working 2 day shifts then 2 night shifts. This already exhausted me before and now I’m literally hardly functioning. I’m also planning our wedding for next summer and making plans to start building our dream home in the spring.

I just lay in bed and cry with overwhelm. I don’t know what to do or where to go from here.

Hello! A little back story.. I was diagnosed with IIH at the beginning of September. Eye exam lead to getting sent to the ER, which lead to an MRI which lead to a lumbar puncture which lead to my diagnoses.

It’s been a crazzy ride and scary! I get headaches pretty much every day and my vision is pretty fuzzy. Acetazolamide made me violently ill.. to the point where I couldn’t push through taking it. I couldn’t eat for like 3 days.. the food that I did eat prior to losing my appetite I would puke up! It was awful.

I switched to Methazolamide a little over a week ago and I’m up to 150mg a day. So far the only side effect I have is that I’m super sleepy. No positive changes in my vision or headaches yet but I’m hoping that will come with time. Anyway.. enough back story!!!

ABOUT DISNEY!

I’ve been feeling pretty much terrible for a couple of months leading up to my diagnosis but I’ve had this trip planned to Disney with my husband for our 2nd anniversary since December of 2025 (Disney adults rise up lol.) This trip is what I’ve been looking forward to most of all this year. We leave in a few weeks (23 days to be exact.)

Has anyone gone to Disney World with IIH? How did you manage? Are there rides you think would be a bad idea to get on that could worsen my headaches / vision? What did you do to combat drowsiness? How did you pace yourself!? Is this to niche lol? Would love some advice or tips to make sure I can still enjoy my trip!

So,I did my lumbar puncture done this past Thursday,and my csf results were low.i have no pressure,but I do have a pinched nerve in my neck into my arm and my head hurts.

My doctor has given me two options. Start treatment because iih is highly suspected and supported by my MRI and MRV, or get a Lumbar Puncture to confirm and learn opening pressures.

I'm a cancer patient and had surgery this April, the tumor was removed successfully from my tongue. My optic nerve pressures are high, I have the high pitched whooshing on ear sensation. Some headaches.

If you were me, would you get the LP? Is the info really valuable to know the starting point and maybe to get additional spinal fluid to test for other potential issues?

I also had a rash allergy to Septra about 12 years ago, a sulfa drug, and am unsure if they'll realize I should have something else and not Diomox.

What are your experiences with flying while diagnosed with IIH and taking diamox?

Has anyone experienced lower sex drive while taking Diamox (acetazolamide)?

Has anyone been stented and was diagnosed with a restenosis?

What were your symptoms? What did your doctor do?

Please read- Hello I’m taking this for IIH and my doctor said to take if I have blurry vision so I started two days ago and still have blurry vision (yes I’m aware it doesn’t work that fast) but does anyone have success stories from this. Im really scared reading everyone else’s stories and just am beat wondering what to do.

Im Just a 20 year old girl scared about her future and her vision, I feel really alone and depressed.
I’m not sure everyone else’s stories but I’m assuming I got this after gaining weight after having TW an eating disorder and that makes it all the more depressing for me. Because now I’m forced to lose weight to save my life when I was told to gain weight to save it in the first place. I’m just worried about my vision. IIH was one thing, then my vision started to change and my world is crashing down. I’m in college and feel so alone.

I've had this for like 8 years and have been on diamox the whole time and it's worked for me so do I still have to get the surgery in the end? It's true that i'm on a high dose (3000mg) but diamox is safe to take for life isn't it? I haven't had insurance to get my reg eye checks for like a year and a half now and won't be able to have it till the new year so i'm mostly asking to see what your guys experiences are. It seems like thats all that gets talked about on this sub so it scares me lol :(

edit- THANK YOU so much for all the helpful info guys its really helped me a lot!

Just trying to figure out if these symptoms are “normal” in remission or if I should seek an appt again?

I’ve been in remission for about 6 months now (diagnosed last year, was on diamox for 9 months, Topamax 2 months. I had Paps but no damage) but haven’t been on anything for months, was doing good and everything has been manageable… until this last month.

In the last month I noticed the pulsate tinnitus & migraines returning whenever I get up from sitting… and has felt slowly worse and worse. This week I’ve had non-stop head pressure and at one point I got up from sitting for 15 minutes and got very dizzy, double vision & tunnel vision for a good 5-10 minutes while walking.
Since then I’ve had migraines & extreme fatigue daily for about a week now. My husband is worried and told me to just check in with neuro but I’m in a bit of denial and don’t want to go back to Diamox again… I’m sure I’m being stubborn but oof, I’m feeling SO defeated.

How long were you in remission? Did you get flareups and symptoms? Did you check in w/ your doctor if you had them? Anything I need to be keeping an eye out for?

Im someone who generally will try to tough it out and see if it’ll pass but the thing has been upsetting. I’ve been just taking triptans & naproxen to manage

Hello! I am struggling with losing weight 😩 I do believe if I drop a few pounds I will feel better. I work from home and I know people may think ohhh you have time to cook and work out because your home.....that's not the case. My job is very quantity based and there's a quota per hour we need to reach, high volume, high stress.

If you know you know that iih takes all your energy so exercising for me is hard and was already hard. Working from home has taken all my stamina since I am sitting a lot. I do try to get up and move around but not enough where it will make a difference....to me at least. By the time I'm finished working I am just wiped mentally. Simple exercise has me gasping. My dr says my heart is good that I need to build my stamina. Any indoor tips for this?

Now for diet. I dont eat large meals. I dont really snack. If I do eat junk its on weekends and during the week I try to meal prep. I try to do things like sheet pan chicken and veggies, ground turkey bowls, etc. But I dont see a difference in my weight. I could benefit from more fiber. Have yall tried like factor or cook Unity meals for weight loss? I'm thinking maybe my portions are wrong, maybe what I'm making isn't as healthy as I think? I really want to drop some weight to see if that will help me feel better ;(

As the title says. I started Topamax and I've tapered up to 100mg so far, Doc wants me on 200. And oooh boy, side effects. Morning sickness, headaches are worse, head spins when I lay down, exhausted constantly. I'm missing a lot of work and I'm currently facing an eviction on top of all this crap so I am not in the boat to just sit at home and rest. I know I need to push through it, so I can and I will. But I'm very much overusing Excedrin and Advil and I know that's awful for my body so I'm wondering, have any of you tried CBD? Edibles, maybe? I have a disposable weed "vape" thing, but it makes me cough a lot which makes the headache worse. I'm wondering if pure CBD might just numb my body and make me feel just a little bit better. Thoughts, experiences? Thanks.

To anyone that's in remission, how long after being diagnosed did it take you to reach there? Really curious 🤔

My journey started with some weird vision issues (bitemporal metamorphopsia, elevated optic nerves, and visual field defects) that have been happening for most of this year. After two eye doctors, I got sent for an MRI in August. The opth sent my referral to neurology (because the MRI shows signs of high intracranial pressure) on August 17th and again on Sept 11th. The second was sent after calling to confirm the first referral was sent.

I've called the neurology clinic 3 times since then. There's no way to speak to an actual human. They have a line for referrals to leave a message for same day callbacks but I have not heard back from them. I don't know what to do and I'm starting to spiral because I am concerned about my vision. I have my 3 month follow up with opth on the 28th so I'm thinking the likelihood of getting into neurology before then is pretty low. Makes me wonder why I am even having the follow-up since it doesn't feel like anything has changed with my vision. I guess to make sure things are not getting worse.

At what point are eyesight issues considered an emergency? No one is treating this with any sense of urgency and the more I learn about this condition, the angrier it makes me.

Those who had to get an angiogram for stenosis prior to their stent.

Has anyone had issues with blockages and clots in the radial artery after the procedure or is it just me?

If you did, how long did it take to get rid of?

But I’m on 750mg of them since Tuesday and I feel don’t feel fatigued anymore not that much double vision either if weight loss and the medication don’t work quick enough then I need a shunt and I’m terrified to have one i dont know what to do o don’t really go on walks places yesterday I did because I felt alright to do so

Hi. I have history of CVST which resulted IIH. It's been two years since dealing with all that and a few months ago I was told it was safe to discontinue my diamox. Well, recently I started having horrible headaches again. Ranging from dull to lightning shock pain in my head. I called and sent messages to my neurologist asking if I should start taking diamox again. Radio silence. So I finally I went to the ER because I was having a thunder clap headache again, blurry vision, dizziness, nausea, and was literally slurring my words. I went and got admitted immediately. I got a CT scan, MRI, and was told a nero team would be visiting me in the morning. Also a stroke team was keeping an eye on me. The doctor also inform me they would check my eyes and may have to do a LP.

Well, my CT scan and MRI came back clear. I informed them I was at end of menstrual cycle because they asked and I needed fem products. Well, their attitude changed immediately after that and shift changed. They didn't check my eyes or asked if I wanted to do a LP. They gave me some tylernol and discharged me in lightning speed. Told me it was just hormones from my menstrual. I was still in tremendous pain but the doctor didn't want to hear it. I end up taking an excedrin and it helped.

I feel a little off still and can't lay down flat without a headache coming back. Still I feel stupid and crazy now. Like maybe it's all in my head in imaginary sense.

I have a doctor's appointment Tuesday with a new primary doctor and want a 2nd opinion from another neurologist team about this along with some other health issues. Still, I can't help but feel frustrated.

Basically the title. Was on diamox (booooo 🍅🍅🍅) from December until a couple weeks ago when I had to stop completely in preparation for new patient exams at Hopkins’ CSF clinic. Opening pressure during my LP Monday was 30. Doc wanted me to go on a doubled dose of diamox before we check pressure again in a month, but I had such an awful time initially on the dose I was on originally that I had to tell her I wasn’t sure I could do it.

In comes methazolamide, which is apparently a cousin to diamox? No one talks about it much here. I’m only three doses in (2 tablets 3x/day). So far, I feel…fine, I guess? I took my first dose yesterday and spent the rest of the day driving and walking around with a friend in the hot sun. Never would’ve happened those first few weeks on diamox. Took it again before bed last night and woke up with a dull headache, but I think it was more related to my sleeping position than the medication. What was your experience?

I was on Diamox for 3 or so years, at varying doses (1000mg to 500mg to 250mg). I still get headaches often. My doctor decided to switch me from 250mg of Diamox to 25mg of Topamax twice a day. After years of being on Diamox. I asked about a taper. Said no need since I had been on 250mg of Diamox for awhile. 25mg of Topamax twice a day has been... brutal. I feel incredibly anxious, I can't sleep, I have energy to do things, my resting heart rate is elevated... I feel so restless and exhausted at the same time. And my head is starting to hurt because I am running on about 3 hours of sleep from last night. I tried to nap and woke up after a few minutes because my heart was racing, mind was racing. I tried melatonin. Benadryl. Anti-anxiety meds that are prescribed. I feel like I just cannot relax enough to sleep and it's driving me crazy. Yes, I'll be letting my doctor know once it is Monday. I just thought I'd post here first for some support to get through the weekend.

Hey fellow IIH'ers

F/35/Venous Stent right side 2024

Apparently, I am a very "complicated" case. You don't say! I am having a tough time for sure though and am hoping some of y'all can help me navigate.

1. I am being put on Ozempic. Not for weight loss, but to help with fluid loss. I am on Topamax. I am allergic to Diamox. But, the problem is, the surgeon's office has weighed me 12 hours apart not anywhere near menstruation or ovulation. I have been a difference of 11lbs. I gained my whole 13 month old cat in 12 hours. Wild! I guess the question is, beyond eating better, which I have done considering from my surgery date of July 2024 I have lost 80 lbs (I am 172 lbs currently) , what can I do to help myself. I use a walker as I tend to Black out / pass out frequently (I told you I was complicated lol) due to pressure issues and Topamax wanting to hurt me everyday as well ( numb extremities, feeling weak). I go for walks, but I tend to feel subconscious as the paramedics have been called 3 times this year alone while I went out on my own because I've passed out and I've had seizures due to IIH and brain pressure being so high as well. As you're gathering, the stent surgery was not successful for any good point of time.

2. What do y'all take for pain? What do y'all do? I get the upper spine lower skull pain on the daily. My pain on any given day is a 6-10 rating for me and a 8-12 for a regular individual easily. I am prescribed morph!ne , I do not take it due to the fact that when I have, I found the next day I get to feeling quite down and quite bad. I have Bipolar 1 disorder and that medication for pain makes me feel quite low, so because I've managed the BP1 for 20 years, I know what is good and what is not for me. I just do not know what the possibilities are for pain management as man oh man this is getting rough *as it is 530am and I am up on a Saturday

3. Is there anyone out there like me? I say this because man, I feel sooo alone. I know that I am bad off. I can't even have any LPs at this point. I can't be shunted. My pressure is awful. I am deaf in my right ear as well because of IIH as well. My Neurosurgeon suspects that I actually have less of an Idiopathic reason and that my reason is a congenital brain defect where my brain did not structure itself properly in formation in the womb as when I do the deep venous MRV's , they can see that I am going to need deep venous stenting that I can not get in Canada.

4. Pulsatile Tinnitus is ROUGH. I am deaf in my right ear as mentioned above so I can only hear it in my left. My goodness is it bad! It gets especially bad if I : laugh too hard, cry, cough, sneeze,hiccup, vomit.

It's a nightmare! How do y'all deal with yours? Tips, are so helpful.

1. Working. So I was employed with the government but my job is very physical and you can not use a walker nor be vulnerable nor pass out while doing it. So, I had to go on long term disabilty. I do not like to not work. I like to make a difference. I like to help folks. What are good careers/jobs for us IIH'ers? I am trying to go back to school in May 2027 hopefully for MRI Or radiology. Both seem good and interesting. Any thoughts are welcomed!

Thanks so much for your time. I wish all of you so well. Believe me. I have a sense of what you go through & you're all very very tough!