Anyone else dealing with IIH?

Just going through a diagnosis myself. 50yr old male. I got identified through an eye screen test- inflamed optic nerves. A CT scan, MRI and lumbar puncture later and there doesn’t seem to be any cause that they can find. My vision is fine, but the spinal pressure was 36? I have headaches which vary in discomfort. I wanted to find people with similar experiences as I never knew this existed until a month ago.

Yes! Diagnosed in 2018 😥 Haven't had any surgery yet though 🙌

Yes, I have it. I just got the diagnosis last month, but we suspected it for a couple years, and I think I’ve had it since around 2004 or so and just didn’t know. The headaches are awful. I had my first lumbar puncture to confirm the diagnosis and relieve the pressure, and now I’m on new medicine called Diamox. I hope it helps since lumbar punctures aren’t fun.

YES! Intracranial hypertension sucks. And that whooshing, waves sound that accompany what I call my "headbeat" have been making noise since I was a kid. I only decided this was an issue REQUIRING a doctor when my vision went fully double while driving. Good times. Better controlled now, but the white spots and fades are back. New floaters too, but not sure if those matter. I'm not thrilled with the idea of another lumbar puncture, so hopefully neuro can try an increased dose without tapping ne like a keg again.

Yes, I got my diagnosis a few years ago after long months of unbearable headaches, nausea and vomiting.