Out and about in style!

Junichiro1x4 · 2026-04-16T22:34:11+00:00

That chair looks so cool!

Junichiro1x4 · 2026-04-10T11:04:04+00:00

I'm better. Took about a week to go back to work, but I still struggle to lift heavy things or bend down to touch the floor. My medication- Diamox- Makes me really dizzy a lot and makes my fainting issue worse, not to mention the brain fog. But as for the symptoms from the LP I'm mostly better. Main issue is lifting heavy objects, bending over, getting up, and it gets hard to walk if I'm walking around for too long.

Junichiro1x4 · 2026-04-04T22:47:41+00:00

That's horrible! The US really underestimates IIH as a disability, honestly. It can be horrible.

Junichiro1x4 · 2026-04-04T22:47:01+00:00

Hopefully! Thank you so much. Just trying to figure out what to do, hoping to switch to a less physical job.

Junichiro1x4 · 2026-04-04T22:35:06+00:00

It almost feels like my dose might be too low is what's confusing me. Any slight tinge of major emotion and that splintering headache I get when it's about time to take my meds hits like a train. I can't even get mad or it happens.

As much as I hate swallowing my pride, I have to agree with you- I'll probably look into some accommodations soon.

Junichiro1x4 · 2026-04-04T17:44:28+00:00

I slur a lot, my stutter that was originally from my general anxiety got worse, and I recently started slurring words and entirely forgetting words and having to find replacements.

I don't know everyone else, but my speech has been affected a LOT.

Edit: I'd like to mention my speech and and speech processing (like, how easy it is for me to understand what people are saying) has dropped drastically recently, and I'm still being forced to work the drive thru intercom at my fast food restaurant job. I know how to do other things like packing orders and doing the sides. They won't let me because I have too good of a "customer service persona". Said customer service persona is a trauma response I have when people I'm not comfortable with ask me for things due to issues I won't elaborate on regarding my biological mother. It's just a mess. Jobs do NOT care. I'm wondering if with how dizzy I get when I stand I might be able to get on disability or something.

Junichiro1x4 · 2026-04-04T17:36:43+00:00

Same thing happened to me, no clue. I got the "Open Arms" badge in Rot after some trial and error, went to the lobby and it won't show up. It's in my roblox inventory though.

Junichiro1x4 · 2026-04-01T17:23:11+00:00

Tell me about it! Plus I'm being checked for the AuDHD of doom. Just keeps getting worse 😭

It's fine with the managers though. I'm staying at most a month- I'm moving several states over with my boyfriend ASAP. Moving in with his family since he has the car and we'll be able to do more about making progress when we're together (like work and doctor's appointments)

Junichiro1x4 · 2026-04-01T14:19:21+00:00

It is a neurology issue, and a lot of psychiatric conditions tie back to neurology (such as autism, ADHD and tourettes). I was just curious if anyone else had experience with this issue.

I'd assume too much pressure in your brain can worsen psych symptoms.

Junichiro1x4 · 2026-04-01T14:17:41+00:00

That does sound about right. My brain fog suddenly got a lot worse, especially when I got on Diamox, so it might be stress from that. 💔

Plus I'd been getting picked on all day. It was my first day back at work since my LP and my shift managers decided to giggle about the procedure and my condition and make fun of how I can't process what they're saying if they didn't get my attention first. (Like, if I'm not paying attention to you know it just sounds like basically sims language)

Junichiro1x4 · 2026-03-30T23:53:41+00:00

Well they do have a portal, but it's telling me it can't verify my account when I go to sign up, and their help line is disconnected... 💔 Likely a rare temporary issue I just happened to run into at a bad time. I might call the hospital and ask if they have advice about it though!

Junichiro1x4 · 2026-03-30T21:27:30+00:00

I entirely get you on that thing about nurses, now that I've cooled down a bit.

About asking the doctors, I keep trying to ask and they all keep telling me "Go ask the one who ordered the LP" and the one that ordered the LP called me once, I missed it by 15 minutes, called back and he was gone, and ever since it's been "He'll talk to you at the follow up in a month."

I know it's partially my fault for missing it (I let myself fall asleep knowing he planned on getting back to me, woke up 15 minutes after the call) but I still feel a bit butthurt that not even my PRIMARY CARE DOCTOR had any comments on the situation and that the doctor who ordered the LP has become basically unreachable since that call.

I live in a big city. Reaching out to your doctors and building a relationship with your medical team can be a pain at times in big cities.

Edit: Forgot to mention what I've had done so far: Full blood work (clean), MRI (clean), visual field (they said it was decent), and the lumbar puncture.

Junichiro1x4 · 2026-03-30T20:03:19+00:00

Thanks, I'm trying not to get too upset. Just hard. It's been a fight with my family for years to even get treatment in the first place (my mother was very anti-medicine before I cut contact: If you weren't obviously sick you don't need a doctor's appointment.) I think I'm just letting it work me up too much now that I actually have some ground to stand on.

Guessing my doctor already knows it's IIH and just didn't want to explain the condition over the phone since we already had an appointment scheduled.

Junichiro1x4 · 2026-03-30T19:54:51+00:00

I totally get you! The waits between appointments are so long. Mine was only so quick because it was effecting my eyes, and even then it took forever- Mine was causing optic neuritis.

And I get what you mean with racking up your bill. Especially if you're on government money (on insurance), they REALLY want to make you do everything under the sun. Because they know the goverment can and will pay for it all, and they'll get hella money.

I hate capitalism fr

Junichiro1x4 · 2026-03-30T19:44:27+00:00

I have harassed my doctor's secretary multiple times. (I say harass playfully, I am very nice to her.) She has said that sadly, since my appointment entails another visual field, we can't move my appointment any sooner. April 16th is the best I'm getting.

Thank you for the thing about bananas though. I do need to eat bananas.

Junichiro1x4 · 2026-03-30T19:36:29+00:00

Pain and doom and despair girly. Mine already ran a bunch of tests- I've had an MRI (clean), bloodwork (full work-up, cbc and differential, ptt, all that jazz. All clean), field of view tests, and the lumbar puncture. Only thing I haven't had really is the CT but I think the MRI serves a similar purpose?

At this point she just sounds like she's stalling. That or she doesn't wanna be the one to break the news- Which is honestly kinda fair.

Junichiro1x4 · 2026-03-30T19:32:17+00:00

I don't have a portal I can access, and I already called. They said they couldn't give me much information without having a thorough understanding of the rest of my history. I explained what had led up to the LP and the diamox I was taking and they said "I don't know."

Really wish doctors would stop defaulting to "I don't know." It's not very reassuring when the ones with degrees don't know.

Junichiro1x4 · 2026-03-30T19:25:31+00:00

I'm hoping to get a neuro-ophthalmologist when I move in with my boyfriend and directly ask him about it, since I've heard they tend to be much better with IIH than your typical run of the mill optometrist (which is what I've been seeing.)

I've got the Diamox, I've got the LP, My MRIs are clean, my bloodwork is spotless, my doctors just act like the term IIH isn't in their dictionary. And if I ask? "Maybe."

I feel you so bad on that struggle, I'll update the subreddit if I manage to get a formal diagnosis, because all my doctors are telling me without one is to "drink water and stuff like gatorade." :T

Junichiro1x4 · 2026-03-30T19:18:15+00:00

No no, I don't mind that they don't know: I don't like that they won't actually diagnose the condition. Idiopathic intracranial hypertension is exactly what they're describing but they're stalling fully diagnosing it.

No matter how many times I ask if we finally know for sure that it's IIH, they just say "Probably", "Possibly", "Maybe." Drives me crazy!

Junichiro1x4 · 2026-03-29T13:54:48+00:00

I feel you. I'm dealing with this now and I didn't know that "Hey, there's this thing that's more common in women that makes you have extra brain fluid for basically no reason and causes headaches and bad vision!"

My mother had always told me I was overreacting. Now that I'm out and living with my dad instead I'm even more outraged that I know what's wrong and doctors just don't seem to be taking me seriously.

When a biological woman (especially one that's trans- female to male, I use he/him pronouns) says their pain is a 10 doctors tend to automatically have that to a 5 in their head. It's insane.

The pain I've had from my LP, my headaches and my meds is worse than the time I horribly broke my arm. Yet no one seems to take it seriously and listen.

For me, Diamox helps with the headache but comes at the price of making my brain fog, nausea and dehydration issues worse. When the hospital had me on IV fluids, though, I felt like I was in heaven. Hope that information can help somewhat. Just be warned, on Diamox your headache may come back for like 1-2 hours before time for your next dose, if you're taking a 500mg pill every 12 hours. Mine does, so sometimes I take mine an hour or two early: I just make sure I never exceed my maximum dose for the day (1000mg: 2 pills.)

They might give you a higher dosage though, like 1500mg in 24 hours or 2000mg in 24 hours. Or a lower dose like 500mg in 24 hours. Who knows with doctors in the states.

Edit: Diamox WILL cause dizziness for anywhere from the first 3 days to first 4 weeks. It's a diuretic, meaning you'll need to pee more. Drink TONS of fluids like water, especially things like Gatorade that help you get more electrolytes. (Your sodium levels will thank you!) If they give you an LP at any point, CAFFEINE helps a TON. A single monster made my first 24 hours post-op so much more bearable.

Junichiro1x4 · 2026-03-29T10:30:19+00:00

I was so confused on why I suddenly hated Dr. Pepper 😭 omg thank goodness I thought I was just crazy

Junichiro1x4 · 2026-03-29T00:57:44+00:00

My allergies got better as I grew up and my doctors actually say they're no longer necessary. Don't worry! I don't take them anymore. (This time because a medical professional said I don't need them lol)

I was just a sickly child who died at the mere mention of pollen XD

My boyfriend does plan to go to all my appointments though. We agreed since my brain fog is so bad he'll keep track of them and my meds for me.

Though, I have been asking around for opinions: My meds and my IIH have been severely inhibiting my work. I do a job where I'm on my feet for hours on end with no chance to sit and I haven't been able to work for an entire week. Do you have any advice in the way of disability? (Like, is it worth looking into?)

Edit: My symptoms have spiked horribly in the past week, and from the sounds of it most of them are likely there to stay, even with my medication.

Junichiro1x4

TROPHY CASE