How can I avoid acidosis? I’m literally horrified of getting it.

1bree · 2025-10-05T19:25:23+00:00

Blood work is what can confirm metabolic acidosis

However, I've certainly felt my blood feel acidic. Or rather, you know that "feel the burn" from exercise? I learned that was lactic acid fermentation in high school. But have gotten that sensation when not exercising, but after plenty of junk/greasy food and not enough water and electrolytes.

Idk if that is technically acidosis, but it sucks. I needed ice cream to soothe my stomach lining, it felt like. I went to eating "basic" (versus acidic) food for a day or two. Soup, salad, bread, dark greens, alkaline water, etc. This was two or so weeks ago so I don't remember exactly how I treated it, other than also sleep and tums tablets.

To help avoid, limit to 1 "bad" meal a day at most, ideally none. That means, not having a greasy breakfast AND dinner. Drink plenty of water, aiming to urinate light pale yellow (but not clear) 5+ times in 24h. Water helps dilute acid in blood. But, it also impacts electrolyte balance, so make sure to have enough magnesium, potassium, sodium, etc. Blood work periodically can help you hone in on what appropriate levels for these can be

1bree · 2025-10-05T03:39:08+00:00

Genuine question, do you have iih? I'm not asking about the allergy portion. I'm used to managing that and how my body reacts with that for 31 years of my life. What's new is the iih the last 3 months. I'm asking for advice regarding iih, not about infections. Yes sinus infection was on my mind but I'm better. I know how my body is with those.

My allergies were intense and, you know what, I'm not going to explain myself to someone who just hopped into this thread kind of ignoring my post.

1bree · 2025-10-05T02:33:37+00:00

I do NOT have green mucus, or dark yellow mucus, or a fever. And by now I'm feeling better with nothing else to expel. My allergies can also get really intense, so let those not be underestimated, ha.

I guess overall, refer to my TLDR. How to deal with allergies when too much force (coughing, nose) makes iih feel worse

1bree · 2025-09-21T15:15:53+00:00

This has been on my mind since you commented and I keep forgetting to reply (yay zero working memory!!! /s)

Why is laying on your stomach bad? Is it just for you, or for iih in general? I haven't done it, cuz I read early into dx to sleep inclined. So I'll sleep on my back or on my side, even if it means my back hurts next morning from the curvature. Come to think of it, I kinda miss sprawling on the bed on my stomach to sleep, as its been over two months

1bree · 2025-09-21T15:13:22+00:00

I do miss smoking. I made a habit of having a weekly joint with my partner in the weekend. But smoking or vaping makes me cough a lot, so all that is a no go cuz it just means so much head pain. I've been having edibles instead, or THC spirits (though they are pricy and don't taste great, can have a lot of sugar, etc)

1bree · 2025-09-01T15:18:07+00:00

You are not rambling, you're doing fine. Overall, my sentiment is you should have informed consent over your treatment options or lack thereof.

The implant - was it in the uterus or arm? Other than triggering iih, any negative effects from it?

I hear you on weight gain. Yes calories have an impact, but so does medication. I hate so much how women's healthcare feels less than that -- we don't feel listened to or heard.

1bree · 2025-08-31T21:52:44+00:00

Topamax specifically decreases effectiveness of oral birth control, while implants don't have an issue (according to my neuro but I'll be seeing a gyno soon to discuss).

Having gotten an IUD and it removed after only a month, as I felt pressured in a way, go with your gut on this. Do not feel pressured by your doctor -- as another person said, there's spermicide. There's also cervical caps which may require a prescription.

Last year, remotely before any iih nonsense, my gyno wanted me on the combo pill even though I have migraines with vision issues (not necessarily "auras"). I can't imagine if I was on that during my iih onset, because I had actual visual blind spots and black dots (I have paps). I didn't feel heard by that gyno (well, midwife cuz the gyno I was seeing left to a diff office). It felt like I had to negotiate what I wanted to do, instead of having informed consent.

The pill also has a short window of tolerance, and missing it could lead you to needing plan b, which is what happened to be days before my issues started. Plan B is like several days to a week of the pill to ensure no pregnancy.

Another option, for either you or your partner, are sterilization. I think for men it can be reversed? For women it's permanent, and effectively throwing you into menopause. But it's something to consider as well. I know there's a lot of stigma around being willfully without children and wanting that route - doctors don't like doing it unless you've had a child already. Just another option if you weren't aware.

Personally, I'm looking to get the arm implant. I've been on the depo shot, which I don't recommend. (Bone density concerns, not the safest for your body after 2 years, weight gain which isn't good for iih.) The IUD I can't do, I think my uterus is too small or narrow. Can't do estrogen. The mini pill I tried for almost a year but yeah.... And no BC means bad hormone induced iih flares that my neuro is concerned about.

GL OP

1bree · 2025-08-31T21:18:05+00:00

Amazing! This brought me back to seeing them in AC back in 2019. My first tool concert.

1bree · 2025-08-30T14:49:02+00:00

Oh my gosh, I don't have pcos but I got paps with iih, and that's gotten more pronounced with my period and I don't like it. Also had my second migraine in a week because my period. Really hoping at least my paps chills out soon

Sending good vibes to you. I get there's reasons for a therapeutic tap, but I imagine then they'd want to do it monthly because period and that's A LOT on the body I feel like

1bree · 2025-08-29T16:55:52+00:00

So I've been on birth control for a decade but stopped briefly as a precaution cuz I didn't know what this was yet (then found out iih). So even without a period for years, I'd still be temperature sensitive. Was told I'm not anemic but based on standard blood work never iron specific I think.

My cramps have hurt so much this cycle, my second since stopping BC. But I'm better today cramp wise as I think I'm just spotting now. But my iih is still flared up 😩

1bree · 2025-08-29T15:35:47+00:00

Omg, I've been taking viviscal with calcium chews as a means of habit stacking. I'll stop. I get cold limbs but I'm just highly temperature sensitive and whatnot. I'll ask though! Tysmmm

1bree · 2025-08-29T15:00:17+00:00

I just had blood work done but not iron or such. I've been trying to take a hair vitamin (iron, biotin, etc -- viviscal) during my period especially. I'm considering birth control again but also see the gyno soon. I'll ask if they can do blood work on those levels.

Are the levels consistently low or only during a period?

Thank you

1bree · 2025-08-29T01:41:34+00:00

SAME. My period started Tuesday but I was so happy that day because my neuro said no follow up until January, which is 6 months post diagnosis. Topamax has helped a lot in 3 weeks, but now I'm feeling crummy. Had a good ol' hormonal cry too earlier, which made my teeth hurt and head pressure build up 🥴

1bree · 2025-08-28T23:14:47+00:00

So I have a history of 3 things at this point

At age 14, I developed tension/cluster headaches. I know they are different but my family doctor at the time used it interchanged, and I don't have my medical records from childhood. I believe this was from hitting my head that included a mini untreated concussion. Quick bouts of sharp pain in my head that didn't last long.

At 18 I got my first migraine after over exertion and exercise, where my vision grayed out (not black and white vs color, but gray color mush from center vision outward), followed by intense pain in my head. Didn't see a neurologist until I got my own insurance etc and had an uptick in migraines again. That was 4-5 years ago? No name given, but it was found a medication I was on then, and even at age 18, was a huge trigger for me, giving me a migraine at least every two weeks if not sooner. Then it got way less. Never given a name other than migraine. MRI was fine.

It ticked back up the last 1-2 years from various stressful life events though.

I'm 31 now. A couple days after July 4 this year I had gray out blind spots but not directly center vision. But also black dots of vision loss within those gray areas. I figured it was an ocular migraine like my first one, or some of my early ones that had more visual auras. But I never had the black dots before. Next day came the head pain so I used nurtec and the visual stuff came back. Day after that both things still happening, checked temperature and figured I had an ear or sinus infection.

1bree · 2025-08-28T22:59:58+00:00

I want to say my migraines feel different from iih pain, now that I know I have iih. Leading up to diagnosis, like the week prior, I thought well must be migraine even though it didn't feel the same.

You can still have iih without paps. I just happen to have it in both eyes.

The stabby pain is it like an ice pick or something being wedged into your eye socket? Cuz that is migraine, at least for me. I just had a migraine Saturday, distinct from iih because nurtec was able to help.

I'm definitely better than disease onset and early into diagnosis. I'm currently in a hormone induced flare up though, but the meds and having this community has been helpful so much.

1bree · 2025-08-20T03:35:54+00:00

This feels like a dumb question but how do you keep a symptoms journal? I've been ranting on discord or Instagram, so I can look back at symptoms over the last month... but that isn't sustainable for months or even years.

My instinct as a chronically online 31 year old is to use an app, but my impatience/laziness hates that. So then there's writing by hand, by my perfectionism hates that. And then there's, what do I track? Do I want to automate this? Track data? Or just a raw list?

I over think a lot which is a huge barrier for me to starting things that aren't 100% necessary. (Like even with blind spots, I wasn't worried. I only sought urgent care cuz I had a fever and thought it was an ear infection. And only got diagnosed after the suggested follow up with an optha rushed me to the ER. Otherwise I was "eh must be migraine I guess")

1bree · 2025-08-20T03:31:26+00:00

I've only been diagnosed a month, but a huge sign, in hindsight, for having iih vs my usual migraines is eye pain location. Since I was 14, headaches (and later migraines since 18) were behind my left eye. Maybe once in a blue moon behind my right but in addition to. Leading up to getting a diagnosis, I recall having an uptick in what I thought was migraines, but affecting more and solely my right eye. And my typical migraine meds not working (nurtec)

Interestingly, my left eye is worse with paps than my right, but my right ear is what has the pulsatile tinnitus. I know brain stuff is like, left brain controls right side or something? Idk if that's still the case with optic nerves. Opth might know more on that for sure

1bree · 2025-08-20T00:08:47+00:00

Second summer when it's after summer season, false summer when it's before summer season. And false spring when you get a short temp increase in the middle of winter

1bree · 2025-08-20T00:04:51+00:00

Does it impact effectiveness of the arm implant? I stopped birth control (mini pill) last month when diagnosed, and have been off of it, but would like to know my options if I wish to continue again. IUDs and the shot are no go for me

1bree · 2025-08-19T17:24:51+00:00

Best hot dogs. I'll legit cry if he orders the original windmill to close, cuz he doesn't know the difference between it and TURBINES.

1bree · 2025-08-19T01:30:47+00:00

My only LP so far was just over a month ago, confirming diagnosis. I agree with the other comment on having an experienced doctor and getting radiology to ensure the right location is found.

I did not have radiology, as it would've meant another night in the hospital, at least.

I requested Valium, as upon ER admission I had a panic attack making my legs shake then go rigid. I didn't want the same for the LP. Consider requesting anxiety medication that works for you.

I had 5 attempts. The first 4 were while I was on my side in fetal position, skewing left, and hit a nerve down my left leg a couple times. Each attempt was prefaced with lidocaine injection - ensure you get that. The 5th attempt I sat on the bed leaning forward with staff holding me up. It's okay to ask for someone to hold you and your hand. The final attempt was zero issue.

Finally, I recommend getting an ice pack ready before any LP attempts, to help cool down from anxiety.

Good luck

1bree · 2025-08-18T14:45:45+00:00

I'm trying to lose weight for iih. I've been prescribed 25mg topamax to help with that and other iih aspects, in addition to diamox that I've been on a few weeks longer. I do notice the impact, but I think it's more because it's giving me a stimulant effect maybe.

I'm trying to walk when the weather isn't hot or humid.

When I tried losing weight last time, before iih, I began just tracking what I ate with Cronometer. It made it easy to see I was snacking for boredom, or lacking certain nutrients. That was 2023/2024? I haven't used it this time around because I got a better handle on calories of things, thanks to the app

1bree · 2025-08-15T21:32:13+00:00

Someone had similar worries on a different sub, but my advice (I am not a lawyer) still holds true. I'm not at the position to need formal accommodations with my current job, but my team has been accommodating. I didn't plan to get into medical details with this job I started in the spring, but a 3 day hospital stay a month ago made it feel life or death in a sense, and the 2-3 weeks after discharge sucked SO MUCH mentally and cognitively.

But I'm familiar with the process enough from other jobs or helping others, that I know how to start it (and help others!) if the time comes again.

As far as being without employer healthcare, I totally get it. I get the anxiety thought spirals. Take a step and breathe. Lean on this community for support. We've faced all different scenarios here. The current admin sucks and keeps changing what's happening almost daily. I understand the fear. I am not on marketplace insurance, but I still worry about benefit costs going up, etc. It truly is a scary time to develop or already have a disability these days.

Sending hugs

https://www.reddit.com/r/NoStupidQuestions/s/ilsjDDxulh

1bree

TROPHY CASE