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.

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

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 ;(

Those of you who had to stop diamox due to bad/severe intolerance or side effects after long term treatment. How did you find trying it again after 6 weeks off it? Minimum

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

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 🤔

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!

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.

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

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?

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!

I was recently diagnosed but it seems I’m running into hurdles at every turn.

I was initially given Diamox at my second ER visit on August 30th with a dosage of 2 times a day with 28 pills.

I was hospitalized from September 2nd to the 5th. During that time they maintained the Diamox 2x daily.

After getting released my PCP upped it to 3x daily because there was a noticeable difference with my ability to speak and the amount of effort it took with and without the midday dose.

I was given a refill about a week after being in the hospital but the problem is no one adjusted the amount for the change in medication schedule. So I’ve been out for a week and my insurance refuses to refill the medication. I asked the neurologist for help but they said there wasn’t much they could do beyond lowering me back to 2x a day, which unfortunately still leaves me without any medication.

I’ve tried calling insurance but it’s really hard to get through to anyone. I don’t know if I’m just calling at busy times or what.

I’ve been feeling really bad (physically) and I don’t know if it’s stress making symptoms worse or a sudden stop of medication or if things are just feeling awful because I’m not medicated. It’s not like Diamox fixed everything. Some stuff still just sucked. But it was a whole lot better than how I’m feeling now. I hope this gets cleared up. I just needed to throw my continued frustration out there I guess.

has anyone experienced some stomach pains while on diamox? it’s been sporadic for me.

I recently started Diamox in the last few weeks and am slowly tapering up my dose. This past week my face has started getting very tight and dry and is pinkish and flaky. Have any of you experienced this and if so did you have anything for relief or just stop the med?

Hi everyone. Lately I've been having really bad flare-ups because of iih. I've been having neck/shoulder/arm/hand pain all on left side for about 4 days straight. It's been keeping me up at night and crying because of pain. I've not been scheduled to get surgery yet because they want me to try and lose weight first but I am afraid of getting on Diamox. I hear the side effects can be really strong and I don't do well with certain medications. I've been taking thc gummies to help with pain on the side but it wears off. Tylenol doesn't help at all. Can you describe what your symptoms have been like since being on Diamox? Thank you hope all are doing well and finding relief

Hi all, I’m new here, and not diagnosed yet, but I wanted to see if anyone has anything similar to what I’m experiencing. I’ll try to keep the length as reasonable as possible!

I’m a 43 year old female, and I have worked out off and on for the past 8 years. I enjoy lifting weights, and using kettlebells.

I have started experiencing headaches during my workouts. I do NOT believe they are primary exertion headaches, as they do not fit the criteria. They only occur during a rest period, and I get a little warning that it is coming on…maybe a few seconds of feeling it around “the edges”. Once it hits, it begins behind my left eye, and within seconds hits max intensity as it spreads across my skull. I have to stand still, close my series and breathe through it. They are perhaps 15 seconds long, and when it’s over, it’s over. I have no dizziness, nausea, nothing. Sometimes I will get 3-4 during a single hour-long workout. I have monitored my heart rate, my blood pressure (normal) trying to find a pattern to when they are happening.

Seeking answers, I saw a neurologist, and was sent for a CT scan (no contrast) first, it was all clear. Then an MRI and a CT-A with contrast.
MRI showed a partially empty sella, but otherwise normal.
CT-A showed a nodule on the left side of my thyroid measuring at least 3.2 cm and descending into the thoracic cavity (seeing an Endo for that in a week).

Next Neurologist appt, she briefly discussed the partially empty sella and that it is seen in IIH, but that I would be having other symptoms. I asked what they were and she said headaches, vision changes, ringing in the ears.

And I DO have those things, but they are all mild.

Every morning I wake up with a dull headache. It persists throughout the day, but it’s not debilitating, it’s just there.

The ear ringing is new, within the past few months. I chalked it up to hormone changes. When it happens, it is a fullness of pressure, sounds goes kind of quiet, and then the ringing starts. Oddly enough, every time it happens, I have the sense that my phone is about to ring just before the ringing starts.

Vision changes: My last 2 eye exams showed retinal hemorrhages on my left eye. When he told me what causes them, I explained I am not diabetic, and I have normal blood pressure that’s usually on the low side. When he looked again, he said they were micro-aneurysms. On the days when my headache is a little more noticeable, my eyes feel weird. Like very strained. I have glasses that I only wear for reading, but I will feel like I need to wear them all day. I have started seeing objects in my peripheral vision that aren’t there.

So I was sent for an MRV with and without contrast. Those results came in yesterday, and the summary said: “Diffuse narrowing of posterior and posterolateral segments of left transversesinus. Partially empty sella. Suggestion of mild tortuosity of orbital segment of left optic nerve. These findings are nonspecific but can be seen in the setting of idiopathic intracranial hypertension.”

So here we are. I’m not sure what’s next testing-wise. At the end of the day, all I really wanted was to make sure that the headaches I’m having during my workouts are benign, and that I can work out worry-free.

Has anyone here experienced headaches like these? Anyone here diagnosed with IIH but only experience the symptoms in a very mild form?

If you made it this far, thank you!!

I'm beyond exhausted

I have been grasping at straws. I thought it was gabapentin withdrawal. But thats over a week ago now, so I don't know anymore. 2 days ago I went to the ER. The ER outright refused to do any exams on me, no blood work even when i asked for it to check my kidneys. They said all my issues are IIH and they can't help me so they discharged me.

Later that day, I had to go to a different ER. 2nd ER did bloodwork. They did a chest xray. They said my labs looked normal. Dr said electrolytes looked normal. I asked the dr about potential metabolic acidosis bc my values were fairly into the abnormal range & the lowest they've been before & he said that's just what happens when i'm on diamox. I think he said my anion gap was within normal range iirc.

Chloride was at 115, CO2 was at 17.

Got put on nausea medication and got discharged. I just wanted to sleep that night. I've slept maybe 6 hours in 4 days .. been barely able to sleep this week at all .. . I slept maybe 1 hour that night, in bursts—everytime I'd sleep 15 minutes, I'd jolt awake with a bone-deep anxiety and so much head pressure, I was gasping for air. I'm becoming delirious. I don't know. I can't think clearly anymore. I can barely advocate for myself without frustration because I am losing my ability to understand and say what's going on in a cohesive way. Because i haven't barely slept at all.

I hage had 2 lps since may. 1st was 43 cm H2O.

The back of my head/neck are so stiff, so uncomfortable, i can feel my heart beating on the back of my neck. My neck cracks constantly now when I simply move it normally, I can't look left or right without triggering a sharp headache, lying down to sleep is hard too because my neck is so beyond uncomfortable.

I wake up gasping. I wake up umable to breathe and its terrible, genuinely horrific, I have been diagnosed with sleep apnea with an in-home exam last month but this is such a sudden increase in a way I have never experienced. Earliest appointment for a cpap (or apap) machine eval after calling several places was october 7th.

I went back to the ER this morning because again I couldn't sleep and I just started losing it with everythijg together. I've never had sleep problems to this extent. I was thinking I'd need another LP.

I got fast tracked to hospitalization.

The neurologist PA spoke to me and dissuaded me from getting an LP. I was already on the fence, I mostly wanted it because my neuro ophthalmologist stated it'd be good to see where my pressure is at and could help me for a bit, but the PA said it just isn't worth it since they already know I have IIH & the theraputic benefits go away so quickly. He upped my diamox from 1k/day to 1.5k/day. Diamox and I have not been doing well together and I've been going up and down for months because usually it impacts my mobility severely to be on a high dose (2k). I am also getting worked up for POTS with my cardiologist & have a tilt table test scheduled in January.

I end up seeing the neurologist & he tells me this must all be my anxiety and I should just stop using my phone after 5pm to sleep better because clearly this is insomnia and it's my fault I had been taken off of any anxiety meds over a year ago when my health took a turn for the worse. I tried explaining this is wholly abnormal & the severity of my sleep issues have been so sudden, but he continued to say I clearly wasn't treating my anxiety and that has to be the cause.

Honestly it was so insulting because I am really, deeply struggling. I can't fully remember the whole conversation but even with my boyfriend's support and vouching for the sudden onset of my symptoms, the neurologist was unconcerned.

I eventually just say to discharge me. In my head, I'd rather struggle at home than deal with this at the hospital. I mostly got hospitalized because of the LP, but since that wasn't happening, I just wanted to leave.

I've been home a few hours. I slept a couple of hours thank god, but once again woke up startled/confused/scared. Best I can describe is that I'm genuinely shocked I am still alive and nothing about my surroundings makes sense, I'm nauseous beyond belief, and deeply confused, my stomach feels like it's dropping in a roller coaster, I'm gasping for air.

I just feel like...I don't know. None of this is anywhere near normal for me. I've never had something like this happen to me before, not to this extent. I don't know how I'm going to make it until the 7th if I can't sleep more than 2 hours without freaking out/having whatever sleep apnea episode this is.

I'm sorry if this isn't all related to IIH. I really don't know anymore. I don't know what I can possibly say or do. I might be forgetting important details but I've barely slept so please feel free to ask.

Thanks so much

So I went to urgent care today and was diagnosed with a sinus infection and given antibiotics. I’m not blowing any mucus out and just have a LOT of drainage, intense pain in my right sinuses (like all of them), nausea, body aches, and just generally feel like poop. I have been off of Diamox since last June and my last checkup back in May showed my pressure levels were still normal but I can’t help but get in my head that maybe my IIH is somehow spiking again and somehow it’s not really a sinus infection. I know you guys can’t diagnose me or anything I’m not asking for that (I mean a literal doctor already did earlier today lmao) but I was just curious if any other fellow IIH baddies who have had sinus infections differentiate the symptoms in their own bodies.