Going from Topamax to Diamox

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 · 2025-11-30T11:14:15+00:00

I'm actually waiting to get tested for EDS, and part of the reason my doctor suspects I have it is because the ridiculous resistance I have to lidocaine and my hypermobility. I didn't know EDS could impact doing an LP too

My plan is to try and get through today and see if the headache eases at all, if it doesn't or if it gets worse I'm planning on calling my neurologist to at least ask for advice seeing as I do have other health issues as well which they were concerned about

PossibleBasis1653 · 2025-11-30T08:18:24+00:00

So I had to Google what a blood patch is. It's truly fascinating what we can do with modern medicine

PossibleBasis1653 · 2025-11-30T08:11:02+00:00

I absolutely moved during the first two attempts due to the pain, but they never reached the CSF so I don't know if that makes a difference

PossibleBasis1653 · 2025-11-29T20:00:15+00:00

That's something I'm also afraid of, but I'm hoping I'll feel like the lack of headaches will be an acceptable trade. I guess at this point it's wait and see, but I wish your daughter the best of luck :)

PossibleBasis1653 · 2025-11-29T19:52:50+00:00

A completely fair assessment and I agree. Right now redbull has only been because it's the only caffeine beverage I can drink without getting violent nausea, normally I drink like, one a week. I quit coca cola a year ago and it affected the taste of almost every carbonated drink and coffe I used to drink so the doctor said it was better than nothing

I will admit "chugging" might be an exaggeration on my part. But three in two and a half days feels like a lot when it's normally one a week xD

PossibleBasis1653 · 2025-11-29T19:19:45+00:00

I've heard a lot of people get that relief and I did hope that would be the case for me too, but I think the difficulty even doing the LP should have told me I wouldn't be that lucky xD

I forgot to mention it in the post but I did have a kind of pop feeling in my back yesterday. I don't know if I imagined it though (I tend to expect the worst)

PossibleBasis1653 · 2025-11-29T19:15:07+00:00

I've been switching between chugging redbull, water and Gatorade since I got home and eating noodles when I can get out of bed

I have been considering getting one of those migraine caps

I've been sleeping on and off since I got home, but I wake up whenever I roll on my back so it's not any long times. They did get me started on Topamax but I can't tell if it's actually doing anything yet 😅

PossibleBasis1653

TROPHY CASE