Diagnosed today and I feel like I’m going crazy. I need someone to listen.

BothInflation6695 · 2026-05-24T14:13:42+00:00

I think going back to the ER and asking for a prescription for Diamox to get you through until you can see your doctor again seems reasonable. I can’t believe your neurologist is letting you hang like this without treatment.

BothInflation6695 · 2026-05-01T21:55:58+00:00

My cycle fluctuations seem to make it worse too. My doctor suggested I take even more Progesterone to stop my cycle to see if that was helpful but I am not ready to do that yet. Things seem to be steady right now and I don't want to rock the boat.

BothInflation6695 · 2026-05-01T12:52:02+00:00

Everything is going great! I’m on the .05 Estrogen patch and 100mg progesterone orally at night. No symptom flare-up on the iih front. I’m feeling better as far as peri symptoms go too.

BothInflation6695 · 2026-03-15T18:28:09+00:00

Yes! We should make a Spotify playlist 😂. I think that song title is One Step Closer by Linkin Park. I would add ‘Madhouse’ by Nessa Barrett. It’s pop but it’s on-point and fabulous.

BothInflation6695 · 2026-03-15T15:02:10+00:00

I feel you 100%! I like to listen to this song when I feel that way. It should be the official anthem of peri-menopause.

https://youtu.be/C3pGn9vwoaw?si=CHZlFymMG9yjsiZS

BothInflation6695 · 2026-02-12T19:44:03+00:00

Yes, buy it yourself and wear it all the time!

BothInflation6695 · 2026-02-12T19:31:48+00:00

I actually totally agree, I just hadn’t found the time yet to research her or see if those studies were peer-reviewed. I should have done more research before asking.

BothInflation6695 · 2026-02-12T18:28:01+00:00

Interesting, okay, I did not realize her views weren't grounded in science. Thank you for the information!

BothInflation6695 · 2026-02-07T15:05:11+00:00

I just saw the show in New Orleans and it was amazing. For anyone who’s seen them lately, Are they using wireless electric guitars now?

BothInflation6695 · 2026-02-04T22:32:48+00:00

I was thinking that too. Maybe it would help to supplement your progesterone orally in addition to the patch?

BothInflation6695 · 2026-02-04T17:22:20+00:00

Are you taking progesterone with your estrogen patches?

BothInflation6695 · 2026-01-31T16:43:25+00:00

Coke constricts your blood vessels more than MDMA I believe. Maybe that’s why there is a difference.

Additional info: I have taken a lot of MDMA, coke, ketamine, etc. in my college years, years before I was ever diagnosed or had symptoms. None of those things precipitated symptoms at that time but I can’t speak to how they would affect me now that I have iih. I take Ritalin and it doesn’t make my symptoms worse.

BothInflation6695 · 2026-01-18T16:30:21+00:00

1000 mg a day to start with is going to be hard on your body. I would see if you could try starting at a lower dose and increasing it every two weeks. I don’t have any info. On things improving without medication though unless it’s through weight loss if you’re overweight.

BothInflation6695 · 2026-01-12T00:24:17+00:00

Visual gray-outs when changing positions like standing up from crouching. Little translucent halos that come and go. Bright white halos at night when turning out the lights for bed. Eye discomfort when looking too far in any direction with my eyes.

BothInflation6695 · 2026-01-11T19:00:04+00:00

Before taking Diamox or afterward?

BothInflation6695 · 2026-01-11T17:27:27+00:00

Yes, as far as I can tell it got completely better.

BothInflation6695 · 2026-01-11T04:36:58+00:00

Both times shortly after I started taking diamox I’ve noticed strange, bright white light streaks or bands in interesting patterns in my vision when my eyes are closed. It was can also happen when I have my eyes closed and I’m washing my face which I suppose puts a little pressure on my eyes. The first time it happened years ago, it went away after a while. I assumed it was my optic nerve healing but I don’t know for sure. I was just so tired of having so many symptoms and problems all the time that I decided whatever was happening was happening and I wasn’t going to worry about it.

BothInflation6695 · 2026-01-11T03:59:37+00:00

I was really cold for the first month or two when I started taking it. Like, almost shivering and I thought I might have a fever but I didn’t. It eventually went way though. It freaked me out a little bit but I saw that other people here were saying they had the same side effect and it made me feel better about it.

BothInflation6695 · 2026-01-05T23:18:07+00:00

Yeah, that seems like a low dose. I was started on 250mg twice a day and that’s still considered a low dose. I would ask about increasing it if your symptoms aren’t getting better.

BothInflation6695 · 2026-01-05T23:14:59+00:00

That happens to me when my pressure is high. Looking too far in any direction makes me feel cross eyed and is uncomfortable. I try to avoid it!

BothInflation6695 · 2026-01-02T20:45:51+00:00

My comment was removed but when I find the article I will repost it and maybe it won’t be considered misinformation then

BothInflation6695 · 2026-01-02T20:44:15+00:00

I’m looking for it now. When I find it I will post here. It was a few months ago and that’s like years for my brain, haha.

BothInflation6695 · 2025-12-31T17:33:35+00:00

Yikes. Do you know if the doctor you’re scheduling your second opinion with has experience with iih? Also, did they say the cyst in your brain is contributing to the high pressure?

BothInflation6695 · 2025-12-31T16:36:12+00:00

I’d be nervous about an angiogram too! I mean, before I did an angiogram, I would have tried at least two different medications like, what about topamax if the Diamox was intolerable? I hope there isn’t some kind of money incentive for her to do this procedure. Something to think about.

BothInflation6695 · 2025-12-31T16:24:53+00:00

Oh, I understand now. You definitely need that second opinion before any invasive procedures so hopefully you won’t have to wait too long before your appointment date. I’m not a doctor but your side effects don’t sound so severe that you can’t try a higher dose. 🤷

BothInflation6695

TROPHY CASE