u/Euphoric-Composer-76

Hello!

I just got diagnosed officially a week ago after years of advocating for myself and trying to get help. I work from home in a healthcare role, so I am constantly on a computer or phone for 8 hours a day. They did give me accommodations already, like 20 minute breaks every hour if it’s needed to avoid triggering a migraine. I can also get a blue screen cover to hopefully help with the brightness. I just got my Diamox and started it. I am also trying to diet and lose weight, I am drinking more water, and just had a lumbar puncture which resulted in a CSF leak and I had an emergency epidural blood patch done 4 days ago.

However, I’m still dealing with a migraine. The pain from all the procedures and medications and more last week went away, and now I have a migraine. I’m doing all they said to do, but is there anything you guys do that I may be missing? Or maybe I can try?

I know some people smoke weed which I’ve never smoked but tbh I’d be willing to try IF there is a chance it’ll be beneficial in my condition. I just have really bad eyesight as is and with them not realizing I had it for years, they’re worried since it’s bad already + I have vision issues with the IIH, I’m at a higher risk right now of going blind so they’re being extremely cautious with me. Just unsure of what else I can do to help myself with this condition or if there’s anything they don’t mention that has helped others.

Edit: I forgot to mention a few things-
I do follow my neurologist as needed and she did mention more frequent appointments. I also have an ophthalmologist and he sees me, is the one who checks my eyes now to see if there is swelling or anything, and is going to work on getting me better glasses (mine are old broken and definitely make the eye pain worse). My PCP is also notified of this new health condition and is local enough that if I need to see her, I can go in. Coincidentally her office is also now with a former PCP I worked with and trust so I can also go see him and get help as he is really good and thorough too.

Tylenol and ibuprofen and all that does NOT work for me. Everyone tells me that and the damp washcloths over the eyes and this and that help but they do not.

I also deal with symptoms like getting extremely overheated where I feel like I’m being zapped, and during the summer I’ve gotten heat sick from getting too overheated, I have a lot of pressure around my eyes, and I get physically sick from the migraines too. I also get dizzy and lightheaded a lot too.

I’m 27F and after years- like I mean YEARS- of being told I’m crazy or overreacting to my symptoms, or being ignored and having to repeatedly see new providers and repeating myself- I finally got diagnosed with IIH!

However, the process to finding it was awful- especially the lumbar puncture. First time I EVER got one, and the numbing medicine didn’t work at all. So I felt the whole entire thing the entire time. I was in shock and couldn’t speak, I felt like I was about to pass out, and I just kept whimpering in pain because it’s the only noises I could even get out because of how severe and intense the pain was. I’m one day out of having it, still in a shit ton of pain even with rotating ibuprofen, Tylenol and laying flat for over 24 hours. Just waiting for a call back on what to do next for this pain (office already called but they’re wanting my neurologist herself to follow up with me on what I’m experiencing now), figure out which medication I want to be on, and just ride this out.

I’m so extremely miserable and in pain,but beyond thankful I got a diagnosis. And on my deceased dad’s birthday nonetheless! Think it’s a gift from him since I’ve suffering from with all of this since I was a teenager.