The IIH message board on Reddit can be a useful place to read about IIH and connect with others.
For example, see this question posted a few days ago by user Krissie (AKA hamiltonshot). Please note, the Reddit users in this post all gave us their permission to quote them here.
“I (20f) was diagnosed with papilledemaSwelling of the optic nerve that carries visual signals from the eye to the brain. & IIH a month ago after dealing with chronic migraines for almost 4 years. I recently started taking diamox but it doesn’t feel like it’s helping at all. I wake up every morning feeling so exhausted, throwing up and even bending over triggers a migraine. It’s really hard to go to work right now because of how badly I feel but unfortunately I don’t have many options with finding any better jobs that pay the same. I was wondering if you guys, especially those who have been dealing with IIH for a while, have any advice or tips on how to cope with this? Thank you:,)”
User aharison4 replied:
“I’ve been chronically nauseous for years, which we now know is the iih. I take zofran (ondansetron), Reglan (metoclopramide) and I also use a scopolamine patch. I do all three daily to help, and that’s the best combination I’ve found so far. I take it along with my diamox. I would definitely ask about adding some zofran to your meds as it doesn’t cause drowsiness (as far as I know) and insurance usually doesn’t have an issue paying for it. I take it three times a day on schedule, and a fourth at night if I need it. I would suggest trying that to see if it helps.”
And user Ancient_Cucumber_457 had this to say:
“I felt really nauseous and exhausted on diamox for about 3 months. I know the side effects are hard to deal with but I am finally feeling better. I would recommend taking the diamox after you have had something to eat. I hope u start to feel better soon.”