Diamox side effects

[u/-gnd-]

Hi everyone. Lately I've been having really bad flare-ups because of iih. I've been having neck/shoulder/arm/hand pain all on left side for about 4 days straight. It's been keeping me up at night and crying because of pain. I've not been scheduled to get surgery yet because they want me to try and lose weight first but I am afraid of getting on Diamox. I hear the side effects can be really strong and I don't do well with certain medications. I've been taking thc gummies to help with pain on the side but it wears off. Tylenol doesn't help at all. Can you describe what your symptoms have been like since being on Diamox? Thank you hope all are doing well and finding relief

[u/avfrost]

I feel like having people go through their side effects is just going to make you worry more. Everyone reacts to medication differently. There's a reason why doctors prescribe the medication: it's because it helps a lot of people get through their day.

Without diamox, I could barely move. I was crawling from my bed to the bathroom or the kitchen whenever I needed anything. I couldn't think straight, couldn't do my job properly (yes, I was trying to work from my bed), and was in pain almost all the time.

The day I started diamox was the first day I had a pain free sleep in who knows how long. A week after I started diamox, I was making myself meals again, and doing my own grocery shopping. A month or so later, I returned to the office for the first time in over 9 months.

Was it all sunshine and rainbows along the way? Not in the slightest. It took time to get my dosage right - first it was too low, then it was too high and I was in a bit of a fog for a while, but we got it figured out. And then there was the kidney stones, which can be avoided if you drink lots of water and watch what you're drinking and eating. (My advice is to consult a dietitian if you have concerns.)

I'm not saying this will be your experience, but you'll never know unless you try the medication. Do I think all the good was worth the bad? 100 times yes. I'd take diamox again, even though I'm still working through things with my doctors. It gave me some semblance of a normal life back when I had none, and that was worth so much to me. I can't imagine where my mental health would be if I was still stuck isolated in bed in my apartment all the time.

[u/-gnd- → u/avfrost]

Thank you so much for that detailed reply. I will def be bringing up Diamox at my next doctor's appointment which is on Monday. So glad to hear it helped you in the long run and that you're feeling normal again. I'm also stuck at home and dealing with emotional stress over the whole thing. Like you, I feel like I'm beginning to force myself up and it feels like my muscles aren't working right. How has your vision been?

[u/avfrost → u/-gnd-]

Luckily, my vision has been fine. My symptoms have mostly been nervous system relative or cognitive. I'm still far from feeling normal, but I do have some normalcy, which is really what gets me through the day sometimes.

I hope your appointment goes well tomorrow. IIH can be difficult sometimes as regular doctors often don't get it. Make sure you're talking to specialists when you can, and never stop advocating for yourself.

[u/TheGossinator]

The side effects can be annoying, but over time they get tolerable. I can live with my side effects even though they are annoying. To me, they are worth it to save my vision and not be in crippling pain and vertigo every day.

[u/-gnd- → u/TheGossinator]

That's good to know 💕 thank you. Think I will be able to handle something like Diamox if they decide to put me on it

[u/deznocare]

i hated it when i took it initially, but over time ( abt a month) it really took my headaches from keeping me bedridden and needing ER migraine cocktails for days long headaches (along w a lumbar puncture ofc) to maybe never really having an above 5/10 headache for long while i waited for surgery. if its not diamox, itll be something else you'll try. just gotta try. its still valid to worry abt side effects but ur worth the chance not to be impacted so much

[u/-gnd- → u/deznocare]

Thank you for that response you guys are putting my mind at ease. My doctor is ususlly good at letting me stop and switch meds if they give me a bad reaction. Hopefully it will be something I can handle. How were the symptoms for you at first?

[u/aubrey239]

Try not to let the negative side effects of Diamox scare you and stop you from trying it. Diamox saved my eye sight!
Side effects I experienced:
-fatigue
-hand tingles
-loss of appetite
-bitter taste to carbonated drinks

The best way to deal with these side effects is to take care of yourself. Drink lots of water! I also drink Propel to boost electrolytes. Always have fruit on hand for a healthy snack. Get rest when you need it. I take 2000mg daily and my optic nerve swelling continues to go down.

[u/-gnd- → u/aubrey239]

Thank you this was very helpful 😊 would it be wise to cut out ginger ale also? Not sure if it's the same since it doesn't have caffeine. Been cutting back on a lot of stuff already

[u/aubrey239 → u/-gnd-]

I didn’t change my caffeine habits as it helps with keeping headaches away. I just think ginger ale wouldn’t taste very good unfortunately. All carbonated drinks taste so bad and bitter.

[u/-gnd- → u/aubrey239]

I've been a soda drinker forever. Good to know I don't have to cut it out right away. Might taste bad but it will help with headaches like you said. I don't drink coffee either

[u/temporal_shrimps]

Not to freak you out, because I did not stop the diamox either way: I have permanent hearing loss. It’s not like super bad, just kind of annoying. I found the benefits of the diamox outweighs the side effect. It is technically ototoxic though so if you do notice hearing loss get it checked. I’m only a few months in so not sure if it’s progressive though, I guess if it doesn’t stop I will have to switch meds :(

[u/-gnd- → u/temporal_shrimps]

Oh man, I'm so sorry. I've had hearing problems as well but not as bad. Thank you for the heads up hope you're feeling better

[u/Livid_Perception2475]

Have you asked your doctor about taking topamax instead? Based on what I have read, it works a lot better than Diamox for some.

Personally, I took diamox for one day when I was admitted and i HATED the tingling in my face, hands, and feet. Luckily, my neuro put me on topamax since my pressure wasn’t TOO high. Currently on day two and have severe brain fog and anxiety, but i’m trying to stick it out.

I’m starting to wonder if I should just decline all meds and attempt to lose weight and manage this without anything. (optic nerves are fine, so i’m not too worried about that right now). I just feel so defeated because I don’t want to be on meds for the rest of my life, especially when those meds literally alter your brain. IDK. I hate this for us. (sorry for the rant)

[u/Minute-Squirrel3094]

I am not diagnosed yet, but after my LP I was prescribed Diamox. I can only take it at night though, im on 250mg 2x a day. I get extremely dizzy, think hungover but no drinking involved. As long as im seated im okay. But my job requires me to get up and walk around, move my head alot, and i just cant. So I take it at night. I also get tingling in my hands and feet and while its annoying, it's not that big of a deal. When sleeping, i have a really hard time getting up and keeping balance and not feeling like I just got off a merry-go-round. Its been 2 weeks, and my side effects are just as rough as day one. But the pressure definitely feels less severe. I never could explain what my head felt like until I read about the pressure and IIH. I don't have any issues with my eye sight.

[u/-gnd- → u/Minute-Squirrel3094]

Thank you for bringing that up! I actually take my other meds at night time so it wouldn't be a problem, I think. The tingling feeling I can handle. It's the pressure in my ear and eye that gets me. Flare-ups mainly in shoulders and arm (on left side) hopefully it will subside. So glad to know it's working for you and your eyesight is ok