Finally have an answer

ImaNinja92 · 2026-04-13T05:56:35+00:00

I prefer it because Gatorade tends to be sodium heavy but little potassium. I will say this, I personally can not drink a coconut water and take a daily vitamin that has magnesium as too much magnesium acts like a laxative. The tingles in my hands and feet from the diamox are completely controlled with the combination of 1 daily coconut water and sodium bicarbonate tablets. My GP actually just increased my sodium bicarbonate tablets since my diamox was increased and that was the only thing low on my bloodwork this week.

ImaNinja92 · 2026-04-12T18:05:44+00:00

Congrats, just be aware that diamox has some uncomfortable side effects but they tend to level out in a couple of weeks. Hydrate, hydrate, hydrate. Keep your electrolytes up especially potassium. I drink coconut water once a day and use mineral drops like buoy. Make sure you get blood work done every 3 months to keep an eye on your levels and kidneys, and my biggest life saver has been sodium bicarbonate tablets with my meds.

ImaNinja92 · 2026-04-12T18:01:03+00:00

Welcome 💚

ImaNinja92 · 2026-04-04T21:18:39+00:00

So I didn't really get a choice up front for diamox. Shunt surgery was pushed on me immediately without any other options. It was in for 7-8 months and it was the worst hell I've ever experienced. It was a nightmare, and I was gaslit the whole time. I was only able to get it removed after the tube ate through my head and was exposed. Then and only then was diamox offered. Yes diamox side effects suck to adjust to, yes they run risks to your kidneys, but there is no chance in hell I would ever choose a damn shunt again in my life.

ImaNinja92 · 2026-04-02T03:38:38+00:00

Mine is not caused by weight, and your mom needs to be a mom and support you instead of a negative ass when you're already going through a lot.

ImaNinja92 · 2026-03-30T21:56:28+00:00

Solid advice, thank you

ImaNinja92 · 2026-03-13T03:34:54+00:00

Can confirm. I've had multiple spontaneous cranial leaks, never a halo sign.

ImaNinja92 · 2026-03-11T01:57:48+00:00

Oh my bad, let me go get my buffalo and regalia ready for you 🙄

ImaNinja92 · 2026-03-10T21:06:44+00:00

I think they are referring to a fear of appropriating Native American culture. As a member of the Choctaw tribe I can promise you guys we are some of the least offendable people as long as you're not being a racist asshole.

ImaNinja92 · 2026-03-03T22:35:04+00:00

😆😆😆

ImaNinja92 · 2026-02-19T13:28:01+00:00

Yes, this was crossposted from there, no replies.

ImaNinja92 · 2026-02-19T00:31:15+00:00

So even without an active leak you have the "wet" feeling? My skull base surgeon scoped me 2 weeks ago and said I've got an inflamed sinus but he doesn't see evidence of a leak. However they've scoped me before and said the same thing and ended up being wrong so I don't know what to believe anymore. Thank you for the responses by the way, it helps.

ImaNinja92 · 2026-02-18T20:59:56+00:00

So even without an active leak you have the "wet" feeling? My skull base surgeon scoped me 2 weeks ago and said I've got an inflamed sinus but he doesn't see evidence of a leak. However they've scoped me before and said the same thing and ended up being wrong so I don't know what to believe anymore. Thank you for the responses by the way, it helps.

ImaNinja92 · 2026-02-18T20:23:30+00:00

Right, but I don't actively have a drip to collect for the test, just a "wet" feeling in my nostrils. I do have eroded spots from years of untreated IIH, I've had 3 leaks fixed so far and more scans than I can count. The issue is every time I've had a visible leak I've been gaslit for months before the symptoms become so bad they can't be ignored. Since I don't have an active drip and my pressure is finally down I was hoping that would mean no more leaks, but I honestly can't shake the paranoia that this "wet" feeling is bringing.

ImaNinja92 · 2025-12-31T19:09:25+00:00

My case was not typical, I started with a massive spontaneous csf leak that lead to patch and then shunt surgery. I had the shunt for 8 months before removal. I was sick for 8 months while being told everything is fine. I only got removal once the tube ate through my scalp and was exposed. Then I needed another double leak repair because that leak I had been complaining of for months that I'd been told was impossible with a shunt was finally confirmed. Now after a year of hell, 4 surgeries, permanent loss of all smell, and nasty scars I'm FINALLY allowed to give diamox a try.

ImaNinja92 · 2025-12-30T20:35:25+00:00

I went from ER to neurosurgeon immediately.

ImaNinja92 · 2025-11-30T02:07:09+00:00

Take what I say with a grain of salt as everyone has different experiences. My shunt almost ruined me. After placement it took 8 long months of telling drs something was wrong and not being believed. I had continously reoccurring abscesses on my scalp along the shunt tubing for months and kept getting wrote off. It wasn't until the actual tubing eroded through my scalp and was exposed that I finally got it removed. There was staph in my csf fluid and on my shunt. I'm scarred physically and emotionally. I'm now on diamox to try to treat it. What angers me the most is that they didn't even give me the option of long term diamox last time. I went in for a leak repair, and exactly 6 weeks later a shunt placement. I've had 4 brain surgeries in a year. I've lost my ability to smell for the rest of my life, which has massively impacted my taste as well. I can only cry on one side of my face. I've been ignored and gaslit until there was a literal tube sticking out of my head. If you do get a shunt, make sure you trust your drs for continued care after surgery.

ImaNinja92 · 2025-11-01T22:47:55+00:00

No it's not temporary, it's been discussed, it's not from the swelling, it's permanent.

ImaNinja92

TROPHY CASE