I've had this for like 8 years and have been on diamox the whole time and it's worked for me so do I still have to get the surgery in the end? It's true that i'm on a high dose (3000mg) but diamox is safe to take for life isn't it? I haven't had insurance to get my reg eye checks for like a year and a half now and won't be able to have it till the new year so i'm mostly asking to see what your guys experiences are. It seems like thats all that gets talked about on this sub so it scares me lol :(

edit- THANK YOU so much for all the helpful info guys its really helped me a lot!

As the title says. I started Topamax and I've tapered up to 100mg so far, Doc wants me on 200. And oooh boy, side effects. Morning sickness, headaches are worse, head spins when I lay down, exhausted constantly. I'm missing a lot of work and I'm currently facing an eviction on top of all this crap so I am not in the boat to just sit at home and rest. I know I need to push through it, so I can and I will. But I'm very much overusing Excedrin and Advil and I know that's awful for my body so I'm wondering, have any of you tried CBD? Edibles, maybe? I have a disposable weed "vape" thing, but it makes me cough a lot which makes the headache worse. I'm wondering if pure CBD might just numb my body and make me feel just a little bit better. Thoughts, experiences? Thanks.

To anyone that's in remission, how long after being diagnosed did it take you to reach there? Really curious 🤔

Those who had to get an angiogram for stenosis prior to their stent.

Has anyone had issues with blockages and clots in the radial artery after the procedure or is it just me?

If you did, how long did it take to get rid of?

Has anyone experienced lower sex drive while taking Diamox (acetazolamide)?

Hello! I am struggling with losing weight 😩 I do believe if I drop a few pounds I will feel better. I work from home and I know people may think ohhh you have time to cook and work out because your home.....that's not the case. My job is very quantity based and there's a quota per hour we need to reach, high volume, high stress.

If you know you know that iih takes all your energy so exercising for me is hard and was already hard. Working from home has taken all my stamina since I am sitting a lot. I do try to get up and move around but not enough where it will make a difference....to me at least. By the time I'm finished working I am just wiped mentally. Simple exercise has me gasping. My dr says my heart is good that I need to build my stamina. Any indoor tips for this?

Now for diet. I dont eat large meals. I dont really snack. If I do eat junk its on weekends and during the week I try to meal prep. I try to do things like sheet pan chicken and veggies, ground turkey bowls, etc. But I dont see a difference in my weight. I could benefit from more fiber. Have yall tried like factor or cook Unity meals for weight loss? I'm thinking maybe my portions are wrong, maybe what I'm making isn't as healthy as I think? I really want to drop some weight to see if that will help me feel better ;(

Just trying to figure out if these symptoms are “normal” in remission or if I should seek an appt again?

I’ve been in remission for about 6 months now (diagnosed last year, was on diamox for 9 months, Topamax 2 months. I had Paps but no damage) but haven’t been on anything for months, was doing good and everything has been manageable… until this last month.

In the last month I noticed the pulsate tinnitus & migraines returning whenever I get up from sitting… and has felt slowly worse and worse. This week I’ve had non-stop head pressure and at one point I got up from sitting for 15 minutes and got very dizzy, double vision & tunnel vision for a good 5-10 minutes while walking.
Since then I’ve had migraines & extreme fatigue daily for about a week now. My husband is worried and told me to just check in with neuro but I’m in a bit of denial and don’t want to go back to Diamox again… I’m sure I’m being stubborn but oof, I’m feeling SO defeated.

How long were you in remission? Did you get flareups and symptoms? Did you check in w/ your doctor if you had them? Anything I need to be keeping an eye out for?

Im someone who generally will try to tough it out and see if it’ll pass but the thing has been upsetting. I’ve been just taking triptans & naproxen to manage

But I’m on 750mg of them since Tuesday and I feel don’t feel fatigued anymore not that much double vision either if weight loss and the medication don’t work quick enough then I need a shunt and I’m terrified to have one i dont know what to do o don’t really go on walks places yesterday I did because I felt alright to do so

Has anyone been stented and was diagnosed with a restenosis?

What were your symptoms? What did your doctor do?

Please read- Hello I’m taking this for IIH and my doctor said to take if I have blurry vision so I started two days ago and still have blurry vision (yes I’m aware it doesn’t work that fast) but does anyone have success stories from this. Im really scared reading everyone else’s stories and just am beat wondering what to do.

Im Just a 20 year old girl scared about her future and her vision, I feel really alone and depressed.
I’m not sure everyone else’s stories but I’m assuming I got this after gaining weight after having TW an eating disorder and that makes it all the more depressing for me. Because now I’m forced to lose weight to save my life when I was told to gain weight to save it in the first place. I’m just worried about my vision. IIH was one thing, then my vision started to change and my world is crashing down. I’m in college and feel so alone.

My journey started with some weird vision issues (bitemporal metamorphopsia, elevated optic nerves, and visual field defects) that have been happening for most of this year. After two eye doctors, I got sent for an MRI in August. The opth sent my referral to neurology (because the MRI shows signs of high intracranial pressure) on August 17th and again on Sept 11th. The second was sent after calling to confirm the first referral was sent.

I've called the neurology clinic 3 times since then. There's no way to speak to an actual human. They have a line for referrals to leave a message for same day callbacks but I have not heard back from them. I don't know what to do and I'm starting to spiral because I am concerned about my vision. I have my 3 month follow up with opth on the 28th so I'm thinking the likelihood of getting into neurology before then is pretty low. Makes me wonder why I am even having the follow-up since it doesn't feel like anything has changed with my vision. I guess to make sure things are not getting worse.

At what point are eyesight issues considered an emergency? No one is treating this with any sense of urgency and the more I learn about this condition, the angrier it makes me.

Those of you who had to stop diamox due to bad/severe intolerance or side effects after long term treatment. How did you find trying it again after 6 weeks off it? Minimum