u/thrownRAwaie

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.

A bit of background...

I won't get too into all my health issues rn, but I haven't been able to walk that much for almost four or five months now(?) maybe more iirc. I just start feeling like I'm about to pass out, and it's really horrible. I keep bringing it up to my doctors, and some nurses have even suggested a wheelchair, but my pcp has shrugged off the idea bc I'm "too young". (I am working on getting a new pcp, I have had MANYY issues with him).

But I can't do ANYTHING rn. I can't walk for more than 10-20 minutes until I need to sit/feel like I'm gonna pass out. My quality of life is down the drain alongside the health issues I'm struggling so bad with, I rarely am able to go outside or do anything, I can't drive anymore, I'm basically holed in my room until my bf comes over and even then we have had to pick and choose what activities we do very carefully bc I get so messed up. It's made me so depressed and confused.

Anyways, I really wanted to DO something—there was a comic con yesterday & I saw the venue rented out wheelchairs and my bf & I ripped the bandaid and tried it out. If the wheelchair helped, we'd have a great time together. If not, we could say we tried, and I'd be happy with that.

The wheelchair helped so much.

I stayed for HOURS!!!! The most I have been out in SO LONG!!! I was able to go all around the whole venue (my bf puhsed me mostly—pushing myself was a lot harder than I thought!). And I felt so happy. I felt like I had a little piece of "normal" in me again, finally, after the months of nothing but back to back chaos and struggle.

I want to get one for myself now. I haven't been able to keep a job due to my health issues & idk if I can for a while, even though I am finally, slowly stabilizing, so I depend on my parents for money/buying stuff rn, but they also don't really understand a lot of this stuff. They won't understand me getting a wheelchair, they think it's a weakness and don't get that bc I am not paralyzed why I don't just push myself?

I'll see what I can do to advocate for myself. Maybe just getting a dr that will listen and agree with me will be enough for them to accept! :)

Anyways I just wanted to share! I'm really happy!!!!! :)))

FINALLY!!!! Some good news!!!! I'm on so many freaking meds & it's been a seriously arduous journey these past 3 months .. with 3 hospitalizations and 2 LPs, and the talks of stents/shunts, I've been really stressed, to be frank.

But I had my follow up with N/O today and...PROGRESS!!! The Diamox & Topamax seem to be working! We're seeing progress! I'm so excited!

The meds I'm on:

Diamox 1,500mg (jumping to 2,000mg soon)

Topamax 25mg

Gabapentin 100mg/day (jumping to 2x a day for the terrible tingles)

Metropolol 25mg

Nurtec 75mg as needed

& vitamins magnesium oxide & vitamin b2

The only thing I'm wondering is why I can't exert myself at all (walking). Even before Topamax, before I started Diamox even, I get dizzy like I'm gonna pass out, and lately doing something as simple as sweeping makes me feel like I'll pass out too! I get really dumb and can't process anything and I have to sit down and wait for my wits to return.

I asked my N/O, she doesn't know, says it could be anything 🥲 Idk who would be the right dr to ask about this bc it DOES impact my quality of life. I haven't been able to do simple things like walk my dog, go shopping, or just enjoy being outside at all for many months, even before I got diagnosed. My PCP is unhelpful and doesn't know anything ever so idk. Maybe my neurologist...? I'm not sure

This weekend is a comic con and I'll be renting a wheelchair from the venue to attend it with .. I'm nervous because I've never used a wheelchair in this way before, but I know I can't go to this con without it, and I really want to enjoy myself at this con .. so we'll see how that goes I'm hoping for a successful visit!!

Progress!!!

General question for y'all.

I brought this up to my neuro opth and my other team of drs but no one's really addressed this.

I can't walk for more than 20 minutes without getting a terrible feeling in my head. It's as if my head is getting squeezed and my sight goes tunnel vision, and my ability to problem solve/think in any capacity goes down the drain. I can only process very simple things and it's mostly just me getting from point A to point B without passing out. I genuinely feel super stupid and like nothing makes any sense and I'm barely holding onto consciousness. This happens every single time I walk for more then 20 minutes, and just gets worse if I push myself.

It's a really awful feeling and it only starts clearing up once I sit down for at least 10 minutes. I'll feel bad for a few hours after, though.

This happens regardless of me drinking enough water, eating, or drinking plenty of electrolytes.

Does anyone else experience this with IIH? It's honestly terrible. I can't go out or walk much at all. I'm honestly considering getting a wheelchair because I want to go places but I can't withstand walking, but I'm embarrassed. This happens every single time and I worry pushing myself anymore will result in me fully passing out. I just want to enjoy doing things again in some capacity. It's been months and whenever I am able to go out it's miserable.

This has never happened prior to this diagnosis. I told my nuero opth but she was more focused on preserving my vision so she brushes it off, I will bring it up again next time I see her bc I literally had to leave the store today again quickly bc of this...

Thanks for any insight you all might have.

I just took my first dose of Topamax and honestly I'm just nervous

I met with my new neuro ophthalmologist and she was very blunt. She told me I just do not have many options, it's either all these medications, or surgery, or I'm going blind. That I do not have time to weigh my options or be cautious about medication. Honestly it was a little crummy to hear but at this point I think she's right so I accepted the increase of Diamox, and the addition of new meds.

I'm now taking 1,500mg of diamox, jumping up 500mg since my last jump. She introduced Topamax to the mix as well, I really do not know a lot about Topamax, and she added Gabapentin because I already have tingling issues from the Diamox that she said might get worse with Topamax.

All in all, I'm on the following:

Diamox 1,500mg

Topamax 25mg

Gabapentin 100mg

Metropolol 25mg

& the following vitamins:

Riboflavin 400mg

Magnesium oxide 400mg

As well as Nurtec as needed for migraines 75mg.

I took my first dose of Topamax idk what to expect. I'm just anxious and it's been such an arduous, painful journey. Today has been a bad symptoms day and my vision is doing so poorly. I see flashbangs of white whenever I glance around, and it's hard to find a comfortable position that won't hurt my head a lot. I also just don't feel right in my head—idk how to explain. Been drinking plenty of water and electrolytes.

I can't even draw that much anymore because my eyes are having a hard time focusing, and drawing/writing are all I have. The nuero opth said that I likely have permanent vision damage already but we won't know the full extent until the swelling is under control, but when I was hesitant about the new meds she shared how bad my vision exams currently are and it was just scary.

I'm just anxious honestly. Been anxious all day. Guess some reassurance or hearing how other people fare on a mix like this would be nice.

It's only been 2mo since I've been diagnosed with IIH and I feel like it's been one thing after the other, nonstop. I'm exhausted.

Had to go back to the hospital because I needed another LP—followed my neurologist's instructions of, "if you start going blind, go straight to the hosptial to get an LP."

Went to the same hospital that did my first LP. This time was just a really hot mess. It feels like no one communicates anything I say to anyone, regardless of how many times I'm asked to repeat myself, and then they simply assume the worst of me, and believe me to be incompetent.

2nd day in hospital, neurologist assigned to me wanted to do a bedside LP, and my nurse informed me of that, as I hadn't seen neuro yet. I told the nurses I don't consent to bedside, I'm not comfortable, and I want to do the IR assisted lumbar puncture I did last time.

Neuro finally comes into my room and she says "we're gonna do bedisde lp" right off the bat, I stop her right there and tell her firmly (but not rudely) that I do not consent to bedside lp and want to do the assisted lp and I'm fine waiting until the weekday (today).

She proceeds to spend the next 10 minutes passive aggressively making me out to be the sole reason my IIH has gotten this bad? Asking me why I haven't been using Zepbound, ignoring me when I explained that my primary care provider and I agreed to hold off bc my appetite has been impacted so intensely that I've already been losing weight, and assumed I didn't have a neuro-ophthalmologist/ophthalmologist in general despite me having told 4 different people that I have been working with one for a while. She spoke to me with pure passive-aggression that was difficult for me not to respond in kind. I stayed calm, continued to assert all of the insane effort I've been putting to try to figure this out, and after she continued to assert many things in rapid-fire succession that I did not agree to, she ended up storming out without us even going anywhere in the conversation while saying that my "LP is tomorrow anyway".

Thankfully my nurse was an absolute angel and supported my decision whole-heartedly and helped me feel more confident about me exercising my right to choose what I'm comfortable with. I asked for that neurologist to be removed from my case, as I did not want her to treat me that way.

Today was LP and it went so smoothly. Last LP was 5/27/26 and my opening pressure was 40 cm H2O & they removed 17mL of CSF. Today, I was at 30 cm H20 and they removed 24.5 mL of CSF.

I feel so much better but I know it's temporary. They did also bump my Diamox up from 250mg a day to 1,000mg (I was taken down from 2,250mg a day to 250mg bc I entered metabolic acidosis which is why I was hospitalized the 2nd time—also a post on my profile). I spoke to a different neurologist before I was discharged who treated me with way more decorum and basic respect and we went over a basic plan to tide me over for a bit.

At this point, I'm really tired. I have surgery scheduled for a few weeks but I do not feel confident on it (posted the reason for that hesitancy a few days ago) as I've been urged to postpone it and get a 2nd opinion. I just feel like this has been a horrid hole I've been trying to crawl out of and I'm having to command respect from everyone that's supposed to be helping me.

I have an appt for a 2nd neuro ophthalmologist opinion on the 11th.. I was also told to contact another specialist that's 3 hrs away so I'm going to try to do that. I'm really freaking tired. These have been the most difficult, emotionally taxing, and physically painful months of my life. I just wanna feel better! I'm going to keep pushing, but the fact it's taken this long for a single nurse (anyone, really) to finally acknowledge me and commend me for my ability to advocate for myself, and reassure me, kind of stings. I'm treated like an idiot for wanting to be informed and making practical decisions that surround MY HEALTH! MY body.

Anyways. I'm gonna keep pushing. I've been taking today to recover but I'll keep at it tomorrow.

my neuro ophthalmologist wants to do surgery to make a cut in my eye's nerve so it can release the pressure and get absorbed into my body, to preserve my sight. Got it scheduled for the 3rd of next month.

had to go to the ER a few days ago for something slightly unrelated. I've seen this ER doctor many times, and he's generally a sweet guy that takes my issues seriously and does what he can to help in a standalone ER. I trust him.

I mentioned my surgery, he looked confused, asked who the dr preforming my surgery will be, and when I said the name of my neuro-ophthalmologist, it was as if all the air got sucked out of the room. I've never seen this dr so serious before and it genuinely scared me. My ER dr said basically he has nothing professional to say about that dr, and in a "don't repeat this" kind of way, asserted my neuro ophthalmologist is a bad DR and a horrible person and urged me to postpone surgery and get a second opinion and gave me a referral to a place he vouches for.

It scared me so bad. I was/am already terrified of surgery. I'm so beyond stressed.

Today I called the referral location, and they said they can't even help me because they don't have neuro-ophthalmologists on staff, and gave me the number to a specialist almost 3 hours away. I can't even drive anymore so figuring out a dr that far is going to be insane.

I've been sobbing nonstop for like an hour. I just don't know what to do anymore. I don't know what to believe or what to do and I just want HELP. I want to feel BETTER. That's all I've wanted and now I have no idea what's safe anymore.

I might need another LP soon because my vision is getting bad again too. And it stresses me out so bad I feel like I'm going to vomit at the thought. I don't want to go blind, I don't want to keep getting LPs, I don't know what to do. My diamox is at a low dose bc when they had it high I went into metabolic acidosis. What options do I have!?!?!?!??!

I can't enjoy my life in any capacity. I'm mostly bedridden. Today I tried walking my dog for 5 minutes and it sent me into an episode. Every time I've tried to go shopping with ny boyfriend I almost pass out. I can't go outside I can't walk I can't do anything. My room has gotten so dirty bc I can barely clean without getting a bad migraine. I feel like a shell of my normal self and now I have no guidance. I was scared of surgery but thought at least it's a solution now idk what to do. I just want help. I just want to feel better. That's all. I'm so confused.

hi i'm f24.

my life has sucked a lot recently. i'm suddenly disabled and forced do depend on my abusive family. There's not really anything I can do about it. i cant really go outside or do too much physically without send myself into a flare up or risking other severe issues. my disability isn't externally obvious so my mom didn't believe me for a long time and it was really difficult. She still doesn't quite believe me but it's way better than it was at least.

the medical process has been nothing short but traumatic, incredibly painful, and super confusing. still is. i'm at risk of going blind forever and i don't actually have a solution bc I was urged vehemently to postpone surgery to get a 2nd opinion.

i cant work i cant really do much of anything. I draw and write and that's pretty much it. I've fully reverted to my middle school coping mechanisms of drawing nonstop and writing fanfiction like it's the only thing keeping me alive.

i just can't bring myself to eat that much anymore. food has been my massive coping mechanism my whole life, despite me having always been very picky. i once lost weight and tipped into anorexia territory for a couple of years, but when that stopped, I just kept gaining until now. I'm well into being obese

something that can help my disability is weight loss so I've been given a weightloss drug. But I haven't started taking it bc these past few weeks I've just not been hungry at all. Food no longer interests me, or brings me joy, I genuinely am forcing myself to eat every day, and that's never happened to me before. Food has always been a comfort to me. Even when I was basically anorexic, all i could think about was food.

nowadays i forget to eat until i'm about to pass out. It's not intentional at all. It's been over a month of this i think or maybe more idk. I just do not think of food, I'm not hungry, nothing sounds appetizing, and it's barely worth searching for something to eat bc it might make me gag even if I wanted it earlier. I maybe eat 1 meal a day, with once a week I might get close to the 2k calories when my boyfriend visits. I really don't think I'm eating much at all, though I try to eat something bc I get in terrible pain if my stomach is empty for too long.

I told my primary dr and he said to just hold off on the weightloss injections but didn't seem concerned otherwise

i just don't know how to feel. I'm starting to lose obvious weight because my parents are commenting on it. They make it seem like it's a really good thing, especially my mom. She was hounding me for weeks to take the meds even when I tried explaining I didn't think it was a good idea bc I'm already barely eating.

The only things that are remotely enticing some days are stuff I can get on ubereats (I also can't driv eanymore), but without a job, I've been depending on my boyfriend to buy me stuff on it. And it makes me feel so bad but sometimes its basically the only real food I've gotten in a few days. He's spending so much money on me and i feel really horrible. I deleted ubereats today bc I just feel like a bad person.

There's food at my house but it's mostly ingredients that I do not have the energy to cook or just eggs. I'm tired of eating 3 hardboiled eggs a day bc thats basically what I've been surviving on lately.

I just don't know what to do. This is the worst time of my life. I can barely be happy and the fact that i dont want to eat for so long is concerning to me.

Day 2(?) of no vaping after 4-5 yrs of regular intensive vaping. I went through 1 vape a week, give or take. By the end, my vaping was getting worse, I was barely lasting 1 vape a week.

Chest pain is nuts. Ended up at the er today just to confirm it's not something serious. It hurts so bad omg.

I can't sleep at all. Every time I fall asleep I wake up 10 mins later gasping for air like I haven't been breathing at all. I might've slept about 3 hours of horrible sleep the nigbt before and tonight i think I've squeezed out 30 minutes so far. I start shaking and I'm completely terrified and anxious beyond belief, like I'm having a panic attack. First night went similar to this.

I'm insanely irrational atm. My life is SUPER hard at the moment with sudden disabilities and stuff but I've been sobbing and breaking down like crazy these past few days. Like having some heavy fucked up thoughts even though I don't think like that as much even with all that I'm facing.

I've quit before for at least a couple of weeks up to 7 months and I have never experienced smth like this. I feel evil like I'm going crazy. I just want to sleep.

Idek what to do

I got diagnosed on the 27th of last month via LP. I'll open up my post history so you all can see the chaos it has been. I'm a 24yo female.

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I saw my neuro ophthalmologist on the 15th.

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He said I was a great candidate for eye surgery to cut a hole in the nerves, considering Diamox is very intensive & is not doing well with me, and he's had good success with this surgery to preserve my vision & potentially help me not need to take Diamox anymore.

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My papilledima is still severe, despite LP. The lowered dose of Diamox has done away with the metabolic acidosis, but my vision is now taking a hit. I am slowly getting worse, thankfully no severe migraines yet, but I'm noticably losing my sight to visual disturbances. The visual disturbances (aura or whatever) make me feel like I'm going insane. When my eyes are open or closed I see it. I am so tired. This has been utterly agonizing to navigate.

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Today, I saw a PA in my neurology, which was the quickest appointment I could make as the main neurologist appt is in September. He said my current neuro ophthalmologist is who they actually send people to, that I could get a second opinion with their neuro ophthalmologist, but that she didn't do surgery, only the dr I'm seeing does, so I was in good hands.

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He also expressed if I begin to go blind again (happened the first time whenever I stood up), that I needed to go to the hospital to get another LP.

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I've been hospitalized 2 times in the span of a few weeks.

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I'm exhausted. I'm terrified. I've never had surgery. My life when from happy and normal to losing my job and I can't do much other than rot in bed. I'm in so much debt and I can't pay it anymore so I'm getting spam called all the time. I'm depressed, I'm exhausted, and to top it all off, I'm desperately trying to move out with little to no hopes of it due to issues with my family. I am stuck and exhausted and depressed and terrified.

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I'm so tired. I'm so tired and sad and it's like no one in my life fully understands how horrible this has been (loving, incredible boyfriend excluded). It's been nothing short of utterly traumatic. It's just been one thing after the other and I am so deeply, utterly exhausted.

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I've never had surgery and I am so terrified. I am also terrified of going permanently blind. I love to draw—it's truly been the only thing that has kept me afloat all these months/past year. I love to write. I love my vision. And I'm just so scared of everything. I've been so strong throughout this all but I'm reaching my limit in a way I can't handle anymore.

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It's been horrible. It's like my life has been robbed so suddenly. The stress I'm in is unlike anything I've ever experienced in my life, and that's insane to say with all my horrible experiences. My whole life has been one traumatic, awful thing after the other, and now this. I just want to be happy.

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All I want to do is sob hysterically and be held and hugged and comforted. Everyone keeps saying to be so strong, and I know I will be, but dammit, for once, I just want to be weak and cry endlessly. I want to be weak and I don't want to deal with this anymore. This stress is insane. I am so tired in a way I can't express and no one really understands—I'm tired of all of this. But I will be strong and push forward and figure this out but, man, I am so exhausted and sad.

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Sorry for the sad vent. I hope to just get some understanding. Thank you all.

So first of all, THANK YOU to everyone that commented and pushed me to keep seeking out care. Honestly, these past few weeks have been some of the most medically traumatic weeks of my life. I'm really happy I have the support of this group bc the doctors sure made me feel like I was acting crazy.

So...long story short, the first 2 ERS I went to did not help at all. They were dismissive and tried to get me out as soon as possible. In the second ER, the doctor didn't even know what I was on, I don't think he looked at my blood work, and tried to release me after 5 hours of me sitting in a room, pain slightly dulled by morphine (that I didn't want but was in too much pain to protest). My boyfriend asked if they had a neurologist at the hospital, and the doctor literally said, "I don't see how a neurologist can help you" and that there was "not much we could do if we admitted you". When I further RE-EXPLAINED that I was in severe pain due to my Diamox (again, didn't know I was on it???) BECAUSE OF MY IIH that I VERY CLEARLY told everyone about, he started talking about admitting me, but I denied and decided to go to the bigger hospital 2 hours away.

The moment we reached the larger hospital, it was night and day difference. The ER department there took me SO seriously and admitted me fairly quickly. The DR there was incredible and she took diligent care to try and figure out why I was in so much pain. She even realized I actually had a UTI that I wasn't aware of (because of how much I hurt everywhere else), and ended up admitting me to the hospital to consult a neurologist and treat the UTI.

There were a few hiccups with care that night. The morphine from the night before gave me horrible stomach issues. I was so constipated but I was in genuine agony in my stomach. Gas was building and not coming out and I couldn't sleep, and all the night nurse kept offering was oxycoton, and after 2 doses I started denying it because it was not helping the pain at all and I just wanted to be helped not cover the pain. They insisted the night doctor was for "emergencies only" when I kept requesting for a doctor to see me.

Honestly, it was the kind of pain that was making me lose my sense of self.

That nurse also unfortunately triggered terrible reaction from me. I was crying in agony and he told me to calm down in Spanish and it reminded me too much of my abusive mother and I freaked out a bit but managed to calm down and request him to leave my room calmly. I sobbed for like an hour after and my wonderful boyfriend stepped out and let the nurse know to try a different approach with me as that reminded me too much of my trauma. We didn't have more issues in that regard but they still weren't treating the horrible stomach pain at the root of the issue.

Every time I fell asleep I would wake up an hour later gasping, clutching my stomach, sweating, horrible agony. I never realized how horrific stomach pain could really be.

It took until 10am yesterday for the day time doctor to arrive and prescribe me something to actually help...my bf had to help with a suppository. He's a trooper and the light of my life, didn't complain or make it weird at all, he just desperately wanted me to feel better.

I had to deny oxy and morphine and all these really intense drugs I did not want. I just wanted things to be figured out and not be covering my pain. I was accepting it at the worst of my pain but I hate narcotics, I hate feeling under the influence of any drug, and it wasn't even helping the pain.

Anyways, after the morning dr, a neurologist spoke with me and lowered my dose from 2,250mg to just 250mg a day, but even she was a bit not understanding on how horrible the pain really was...it took my boyfriend stepping in to reiterate my points for her to start getting it fully. She just kept insisting I was more sensitive to Diamox and this kind of just happens with Diamox. She said because of how severe my IIH was specifically with the edema, I really need to be on a very high dose, and it's either Diamox, the other medicine (that she said has worse side effects), or surgery (that she said I shouldn't want to want lol). I was just happy she approved the reduced amount.

This morning I felt like a million dollars. My stomach pain was gone, my diamox wasn't obliterating me, and I could actually walk around and sit down!!! Success!!!

When the daytime doctor spoke with me, I asked about Metobolic Acidosis (no one had brought it up) and she looked at my labs right there and was like oh yeah you had that. She said she was comfortable discharging me though. Honestly I was so happy I felt normal and I seriously wanted to leave so I left it at that.

I have a follow up neurologist appointment on the 17th, and I'll also be rescheduling my ophthalmologist appointments (that I had to cancel due to not being able to sit or really exist without pain), but I'm crossing my fingers that this is the end of serious and terrible issues and I can focus on healthy weightloss and managing minor symptoms.

Thanks again everyone for your thoughts, experiences, and insight! I felt way more emboldened to advocate for myself (even though it was quite difficult to with the pain I was in). My boyfriend is truly the star of the show for being there 100% of the time and caring for me so diligently and advocating for me when I really struggled. I'm happy to say it's been several hours and I still feel so much better. I'm a brand new person and I have hope in my heart again.

my doctor isnt helping me i am on 2,250mg of diamox from when i got my lp at the er and got diagnosed with iih on 5/27. 3 tablets of 250mg 3x a day. I am having such insane symptoms. I told my dr he is not helpig me told me he was gonna talk to the neurologist he hasn't called anyone. He prescribed me weightloss meds. I called the neurologist myself and they scheduled me 2 weeks from now.

every day i can feel my skin. My joints. My bones. My spine. Im going insane. Oversensitive to tbe point of insane pain. All I can do is lie down. I tried drawing today because I love art. It hurt me to draw and now I'm in awful pain. I'm sobbing hysterically. My ears are ringing like someone shot a gun right next to mh head. I cant sit down!!!! I'm going INSANE and no on3 is helping me!!!!

I cant TAKE this anymore!!!!! I'm SUFFERING!!!!! It's been 8 days of AGONY!!!! I'Ve tried being SO positive but I've hit my limit today IXm hysterical and I can't even sob as hard as I want because it's making me dizzy!!!!!!! I don't feel human anymore!!!!! All I can do is lie down!!!!!! Lie flat on my back and stare at the ceiling!!!!! I CAN TTAKE IT!!!!! I've tried being so calm!!! I'm drinking so much water and being gentle and diligent and careful and NOTHING IS HELPING. I FEEL LIKE I'VE JUST GOTTEN WORSE. I cant shower by myself!!!!! I can barely eat because i cant sit down!!!! I cant TAKE IT!!!!!!!! I CANT BE POSITIVE ANYMORE!!!

Update:

I went to the ER. That doctor was horrible too. They did a CT scan without contrast + drew blood (painful—my veins are super small for some reason rn they needed to use an ultrasound they were digging in my arms and hands for like 20-30 minutes straight).

The ER doc put me on morphine and left me for like 5-6 hours. 😭 did a CT scan. Then went to discharge me, no insight, no plan, and he barely knew a thing about what was happening to me. Didn't know I was on Diamox even though I've communicated that to everyone clearly. My boyfriend asked if they had neurologists at the hospital there and the doctor made a face and went "I don't see how a neurologist is going to help you"??????? I'm sure this doctor didn't know my diagnosis of IIH.

It took my boyfriend cutting in and asserting that I am suffering for the ER doc to suggest admitting me, but he also said he thinks there's really nothing admitting me will even do. The ER doctor also had NO suggestions for my medication (again, he had no idea what I was even on).

I'm exhausted. So bad. Like emotionally exhausted. I told the doctor I will be going to the big city hospital 2 hours away and he was super eager to discharge me. I should have been more assertive or something but in any case I want to be at the other hospital that place was horrible. I'm going today, my boyfriend and I just needed some sleep.

Also with 0 advice from ANY doctor even after I've BEGGED for it... I did not take my dose last night (missed my window anyway) and this morning I will be taking 1 pill instead of 3. I cannot handle this. 😭

Sorry for these consecutive posts. I just met with my PCP who is trying to connect me with a neurologist asap, and I already reached out to a neuro-ophthalmologist and am waiting to hear back. Just gathering insight.

I'm on 2,250mg of Diamox a day. I've had soooooooo many side effects. All my PCP felt comfortable doing is trying to arrange a neurologist & putting me on weightloss medication (Zepbound)

I can't sit at all. I've been on diamox for 6 days now (also LP done then).

I'm drinking 3.5-4 liters of water a day, electrolytes, and have added vita coco that I sip on.

My pressure was 25 when measured at time of initial LP, then drained.

Sitting takes it out of me entirely...Like a heavy weight in my head, super dizzy. I was so hungry today so I tried to push through that initial feeling to continue eating. The sensation grew so much worse, and I had to set the food down and lie down, my head thudding like a drumbeat. It felt like I lost consciousness. Not exactly asleep, but not super aware anymore at all—I had this bizarre dream-like state before coming back to awareness. I must've been sitting for about 10 minutes before I laid down.

Has anyone else dealt with this??? Is this typical for diamox at all?

Severe pain. I can't describe it better than it felt like my bones were on fire. Neck and spine, I couldn't lie down, I couldn't sit, I could tolerate standing only bc it put the least amount of pressure in my spine. I couldn't do anything. The pain was unlike anything I've ever felt, it was making me sob. It started an hour after my last dose of Diamox (750mg) of the night.

I have been drinking a lot of water to combat the diamox. I have recently added smartwater to the mix because I was getting pounding headaches that regular water was not helping with. I drank 3.5 liters spaced out throughout the day.

My bf took me to the ER. One of the nurses was very nice and I liked her, but everyone else was very flippant and unhelpful. Especially the doctor. He barely let me speak. I was crying in pain.

I don't cry from pain like that. Ever. Not even when my brain was being pushed by so much CSF liquid I couldn't think properly and I was seeing stars 24/7.

It was like my spinal cord was on fire. And it was spreading out. I was in so much debilitating pain. It was making me stupid from how much it hurt alone.

They gave me some pain medication—it kinda helped, not by much though. It was benadryl and something else.

They took blood samples & got me CT of my spine. It took a while for the CT to be processed by the DR, and by the time he came around, I was in so much pain again. Just lying back and nearly crying, couldn't writhe bc movement hurt.

Dr said CT came back completely normal and I was good to be discharged. I had TO BEG for him to give me something for the pain. I was in SO MUCH pain. He agreed and they sent me home with another pain shot.

The shot was in my muscle so when I got home I did feel better. Did not send me home with anything else, or any instructions to see anyone.

I managed to get ahold of my PCP's nurse triage today to try to sort stuff out. They got me an appointment with my PCP for tomorrow instead of Friday. I have my Ophthalmologist this Wednesday.

But I don't want to feel that way again. That was so horrific. It was excruciating pain. I don't know how to describe it. The pain was so bad I was nearly delirious at certain points. I kept repeating, "I wouldn't wish this pain on my worst enemy." AND I MEANT IT. IT'S HORRIFYING.

I don't even know what happened or why. That was the worst thing I've ever felt ever period. I just want to be healthy again. I don't want to be in pain anymore.

hi all.

i'm on day 3 post LP & Diamox 3x a day 3 pills (250mg ea)..

I wasn't told much before being discharged. Just "don't bend over". I wasn't told when I should take the pills, how far apart, just 3x a day (taking them at 10:30AM, 4:30PM, & 10:30PM). I wasn't told I'd have side effects. I was told to follow up w my ophthalmologist and PCP.

I have appts with my ophthalmologist on the 3rd and PCP on the 5th.

I've been feeling like shit, for lack of better terms.

No headaches at this current moment, but woozy—typically immediately after my dose of Diamox, but even throughout the day. Woozy and floaty, my ears feel like they're full of cotton. Sometimes super woozy, and it's hard to function at all. Not tired in the slightest, just...floaty woozy, I can't describe it very well.

It's hard to eat. The thought of food is making me queasy, so much so I almost gagged when my bf mentioned a food option I usually love. I forced myself to eat pizza (the only appealing thing) and 2 small slices had me nearly vomiting. I had some more concerning symptoms the other night (pain in my lungs/upper back that made it so I couldn't lie down for an hour bc I couldn't breathe), and when I contacted my pcp the following day, they said the most that could be done was me going to the ER.

Fair, okay. I've not felt that pain again, thankfully.

I just don't know what is "normal" and what isn't. It's hard to sit—after 5-10 minutes, I feel sick, dizzy, exhausted. It's much easier to stand, but it's best to lie down. I have strong tinnitus in a way I've never experienced! Louder than most anything else. I've struggled with tinnitus before all of this, but this is so different. It's intense. I generally feel like crap. Sometimes my neck hurts. Sometimes my lower back aches. I feel like all I can do is lie in my bed and go to the bathroom and sleep, and even then, I just don't feel well.

Today, I feel crap. No headaches. Just a general dizzy/woozy. No vertigo. I can stand up on my own. Sitting to eat anything sucks. I'm a little nauseous. But even lying down and opening my action figure (I'm a grown adult btw lol) exerted me so much I got super woozy again. I can handle everything else honestly but the wooziness is a serious pain in my butt. 😓

I guess I should ask am I at a really concerning point or is this par for the course? Since it's the weekend, I can't contact my PCP or ophthalmologist. I can go to the ER but I genuinely cannot keep wasting visits unless it's necessary. It took over 10 visits this year to wind up with the IIH diagnosis, including separate doctor visits in between :'(

Hi everyone!

This is kind of a long one, I'll try to keep it concise!

I'm a 24yo female.

I have been struggling to a new extreme for 2, maybe 3 months (in reality, I've been struggling with my health for well over a year now, but for these specific symptoms, around 2/3 months iirc).

I've had complete vision loss when standing for 30 seconds to a minute, pressure in my head so bad its felt like my eyes were going to shoot out of my head, static in my vision 24/7, seeing double/triple, migraines (I've never experienced migraines in my life) so bad that I lose the ability to think or speak right. That's been going on for about 2 months straight. I've been to my nearby, free standing ER 3 times & seen my PCP consistently with no solution or diagnosis, just speculation and a complete lack of urgency over my completely debilitating symptoms.

Toward the beginning of my worse symptoms in April, I was trying to get new glasses, hoping it'd help. The optometrist saw my retinal scan and freaked out, urging me to go to the ER because of how severely my optic nerves were jutting out. He almost didn't let me drive there! He said I might need a lumbar puncture, and I never heard of that, but I was so scared. The ER did not take this seriously at all, ran no exams, and sent me home after bashing the optometrist for "not knowing enough" because he wasn't an ophthalmologist. That night, my severe migraine symptoms started, and I went back—they took it seriously (different doctor this time) and ran all the exams they could due to concerns over blood clots in the brain. Everything cleared, and since they're free standing, that's all they could really do. I was sent home and urged to schedule appointments with an ophthalmologist and a neurologist.

I saw an ophthalmologist on the 20th. In between that time, I lost my job due to being unable to withstand anything more than bedrest or 15-minute outings. I didn't feel comfortable driving anymore due to my vision issues. My PCP was fairly unconcerned with my issues but scheduled an MRI. I took the MRI & saw his notes afterwards—nothing concerning showed.

The ophthalmologist took 1 look in my eyes and asked if I had scheduled a neurologist yet. I had, but it's in September. He told me that wasn't soon enough and said I'd need a lumbar puncture sooner, so he was going to touch base with my PCP to try and get that done as soon as possible. He sent me home.

I tried holding on. Ended up back at the free-standing ER with blood pressure at 170/108, and a whole load of issues. Tests resulted in nothing amiss. Sent home.

2 days ago, on the 25th, I experienced the single worst version of these issues. I had gone to the dog park with my boyfriend for 30 minutes and had to rush home because of the pressure building in my skull. I took a nose dive at home.

Light blinded me. Full-on flashbangs. I couldn't see properly. I felt like I was getting stabbed in my eyes and brain. I was utterly miserable, basically a mumbling heap in my bed for hours. I took some medication for migraines the ER prescribed, and the stabbing pain lessened, but other issues arose. At 3am, I could no longer raise my right arm. I felt stupid, unable to speak properly. My boyfriend was understandably terrified and wanted to take me to the ER. I had no hope I would get proper help after everything. My parents convinced me to stay home and insisted I was overthinking.

I called my dr's office as soon as they opened, and by that time, I still felt miserable, but I could move my arms and speak. I got transferred to a nurse triage, who was the sweetest woman in the world that insisted I go to an ER connected to a hospital. My bf rushed me there, and I was admitted to the hospital within a few hours.

They did a super long MRI that night. I felt awful—they were giving me muscle relaxants and Tylenol and it did nothing to touch the pain. My spine hurt. My neck hurt. My head didn't hurt but I felt terrible.

Today, they did the lumbar puncture. I was absolutely terrified. Thankfully, the staff went above and beyond to assure my comfort—the main technician doing the procedure was an absolute sweetheart and a very motherly woman, which eased me immensely. She noted that the pressure was twice as high as it should've been.

As soon as she started removing some spinal fluid, I almost started crying. The static was gone. I could breathe. I could *think* clearly. It was immediate. She took out 4 vials of my spinal fluids and said that it's not even going to be at where they usually put it, but it'll be low enough that I'll hopefully feel better.

When I was taken back to my room, I cried. I felt normal. For the first time in god knows how long. I could think properly again. I could see properly. I wasn't in pain. Even forced to lie down for two hours, I felt fucking amazing, like I finally broke out of the water after nearly drowning. And that feeling has not left. It's been over 9 hours and I feel human again. I feel normal.

I was seen by the neurologist there, who explained IIH a bit, and I've been prescribed Diamox to take 3x a day. He said they usually do it 2x, but apparently I just have that much liquid building in me. I am to follow up with neurology & my ophthalmologist.

I just wanted to share. I am so fucking happy. I didn't realize that I had truly lost hope these past few months. I was in genuine hell, and I was truly just...surviving.

I've been home for a while now, and I feel better. Standing sucks still, and I had a slight altercation with a wasp the second I stepped out of the hosptial that, unfortunately, made me move more than I had anticipated, so that left me pretty unwell 😭 How long does it take to heal after this procedure? Lying down I feel great, standing up makes me woozy.

I don't know much else about what my options or future looks like. I am just excited to be feeling normal at the moment, and am looking forward to figuring things out, and scheduling further appointments. :)

Tl;dr debilitating symptoms for 2-3 months (maybe longer), pushed off by drs and ended up with stroke-like symptoms 2 days ago. Hospital admitted me and did MRIs and a lumbar puncture. Pressure was 2x higher than it should've been, told a bit about IIH, put on Diamox 3x a day, & told to follow up with ophthalmologist & neurologist. I feel a thousand times better (when lying down) after the lumbar puncture and it's been making me cry happily all day...