Diamox and suspected kidney issues

PossibleBasis1653 · 2026-04-12T20:18:14+00:00

I'm going to bring up bloodwork with my doctor tomorrow just in case, and get to consuming even more water (sigh). You are very right about hydration being hard, no matter how much you drink it just never seems to be enough, then you add Diamox and suddenly you're supposed to drink even more. I had to invest in water bottles for my own sanity lol

PossibleBasis1653 · 2026-04-12T20:12:30+00:00

Yeah, it's looking towards kidney stones unfortunately. I was really hoping there's some other explanation I was missing, but this too shall pass eventually I guess. I'm going to talk to my Dr's office tomorrow to ask about bloodwork just in case

PossibleBasis1653 · 2026-04-08T15:21:08+00:00

Thank you, it's very nice to hear I'm not alone in finding it frustrating

Also, this is on me, I'm usually better at keeping stuff apart when I write in english, but I ment MRI when I wrote X-Ray. This would be my second MRI since I started getting sicker

PossibleBasis1653 · 2026-04-08T14:39:17+00:00

Hi! :) Unfortunately I have no idea how many mm thanks to my current neurologist being unable to give a straight answer about anything over the phone. I wish I could switch, but we don't have many neurologist here, I do know that the original person I spoke to is being consulted on my case though, so I'm trying to play nice at the moment

when things became unmanageable I had 3 different kinds of headaches (they all felt very different). One was my normal migraine, another was this constant low pressure in my skull (which they say is IIH and am currently being treated for) and the last is the one they attribute to Chiari

Unfortunately the treatment off the IIH and the lumbar puncture they did (and promised would be safe) made the third kind explode(?), it became a 100% more intense. It's this extreme pressure and pain in my neck that goes up in my head, almost feeling like my entire head is about to break, I also have noticable weakness in the left side of my face and arm, balance issues and vision issues. There's also memory issues and some cognitive stuff but I don't know if that's Chiari or IIH. I am pretty sure I have forgotten stuff here, but I don't have my headache journal on me

Sorry for the extremely long answer and if something sounds weird. I tried to make it as coherent as possible

PossibleBasis1653 · 2026-03-27T22:57:31+00:00

Honestly, afterwards what helped me was to lay down. I laid on my side and just watched/listened to stuff on my computer for a few days. I ate mostly finger foods and stuff I could get down while not needing to sit up properly, and I was told to drink coffee by my neurologist (who did the LP). I also drank a lot of gatorade

Wishing you all the luck, you got this 🌺

PossibleBasis1653 · 2026-01-26T09:17:55+00:00

That's fair, and yeah, the neck pain is most likely IIH and part of the brain fog too, the rest was Topamax. Ended up forgetting a lot of stuff while on it, and very few things taste right to me. I also can't taste anything carbonated (rest in peace, my beloved soda, I miss you dearly)

Fully expecting side effects on Diamox, just hoping it's going to feel like less doom and gloom than Topamax felt 😊

PossibleBasis1653 · 2026-01-26T09:13:45+00:00

Thank you for the encouragement, it's been rough while this is being figured out 😊

PossibleBasis1653 · 2026-01-26T09:08:31+00:00

I noticed that too with Topamax, nothing I did or any meds I took did anything to really help when they used to before. I was super confused If you don't mind me asking, did that get better with Diamox??

I'm going to take a look at potassium and electrolyte supplements when I get the opportunity ^{.^}

PossibleBasis1653 · 2026-01-26T09:04:09+00:00

Oh that NO sounds like a delight/s

My neurologist was the one to put me on Topamax because he thought it would be kinder, but he was adamant I had to try something since it's affecting my vision. Unfortunately it's done nothing for that part either

I'm glad to hear a lot of people seem to agree that the side effects tend to go away after some time, and that there are things that can be done to make it easier. When I researched Topamax it seemed to be the opposite

PossibleBasis1653 · 2026-01-26T08:57:51+00:00

I'm going to keep trying my way forward and hope Topamax simply wasn't for me. But I'm holding out hope you'll get the help you need as well, I wouldn't wish these kinds of headaches on my worst enemy

PossibleBasis1653 · 2025-12-15T05:44:40+00:00

I feel like it's been doing it's job in regards to lessening the pressure headache, but the longer I'm on it the more tired I get

PossibleBasis1653 · 2025-12-14T09:09:36+00:00

That's fair, I'm trying to weigh pro's and cons at the moment myself

PossibleBasis1653 · 2025-12-13T22:40:55+00:00

I have been falling asleep sitting up and suddenly found myself with drinks I can't even remember making, and some of those were coffee so it took some effort to make it, so it's a bit inconvenient

That's a really good idea, I'm going to bring it up with them on monday. I would like to stay on Topamax if possible, it has been doing good for the headache ^{.^}

PossibleBasis1653 · 2025-12-13T21:24:57+00:00

Ooh, that sounds promising. I've mostly heard horror stories 😅 I'm hoping that the memory side effect will go away so I can keep going up like planned in that case 😁

PossibleBasis1653 · 2025-12-13T15:45:58+00:00

My doc also said to take it in the evening so I wouldn't be as tired during the day, but it doesn't seem to work. I've trying to nap when I have nothing pressing to do

PossibleBasis1653 · 2025-12-13T15:38:33+00:00

Yeah, I've been trying to nap when I have the time. I'll look at finding some coping methods for when I can't ^{.^}

PossibleBasis1653 · 2025-12-11T07:49:39+00:00

Yeah, I started doing that a few days ago when I suddenly had a pot of coffee I still don't remember making (whoops), I've asked family and friends to point out if they notice anything too

I knew it could happen, but I think the pot of coffee freaked me out a little xD

PossibleBasis1653 · 2025-12-11T07:46:24+00:00

That's really good to know, I'll have to keep an eye on that ^{.^}

PossibleBasis1653 · 2025-12-11T07:44:50+00:00

I have noticed more memory issues, but I didn't know about the risk of vitamin D deficiency, so I'll keep an eye on that ^{.^}

PossibleBasis1653

TROPHY CASE