What reduces your pressure headache?
I started having a pressure headache in January of 2023, and have had it every day since. It came on with my Long Covid. (I also have pulsatile tinnitus and massive fatigue. The tingling in my extremities can be explained by my spinal nerve compressions.) The headache varies in intensity but never goes away. I have not found anything I can do to make it better, or anything I do that makes it worse. It’s absolutely awful.
Various neurologists over the years kept telling me it couldn’t be IIH because I didn’t have any evidence in my optic nerve. I have elevated eye pressure at the ophthalmologist, but never anything she showed much concern over.
Fast-forward to last week, when the spine surgeon I was consulting about stenosis in my lumbar and cervical spine said, “Oh it’s probably IIH. I can tell by your MRI: there’s not enough room for your brain in there.” (I’m paraphrasing here.) He said the only thing to do is lose weight, go on diamox, and eat a low sodium diet.
Here’s where I struggle with this advice:
-Since the headache started >3 years ago, I have lost and gained 20-30 lbs. more than once and it made no difference my symptoms. Wouldn’t it be better when my weight was down and worse when it’s up?
-Even if losing weight helped, I struggle with purposely changing my weight. I have tried GLP-1 medication, find it very difficult to tolerate and also too flipping expensive
-Plenty of thin people also struggle with IIH, how can this be the only way to address it?
-I tried diamox, side effects are completely intolerable.
-I have been on minocycline for 6 months due to severe dry eye. I just read on this board that that could be making IIH worse. I don’t see a direct correlation, but I wouldn’t be surprised.
Has anyone done anything outside of weight loss and/or diamox and gotten any relief? I realize a lumbar puncture would definitely diagnose this as IIH, no doctor is willing to do that for me so far.
Thanks.