New to IIH and scared about it

This is venting but advice is also welcomed! I am a 23yo, African-American Female. I am 5’4” and around 225-228lbs. My great aunt was put into medical books for IIH because she was the first case of a pregnant, Black woman in the US going into emergency surgery during her pregnancy due to vision complications from the IIH. She lost vision in one of her eyes and the surgery saved the other eye.

I just got diagnosed with IIH 1 week ago. On Thursday last week, I was at a ophthalmology appointment because I already have a horrible diagnosis called Keratoconus which has caused me to be legally blind. I was getting a checkup of sorts for that when my doctor looked back into my eye and told me I needed to go to the ER immediately. He said my optic nerve was extremely swollen and he wasn’t entirely sure why because my optic pressure was normal.

My mom rushed me to the ER where I sat for 16 hours before getting back into a temporary observation room. They did a spinal tap, my spinal fluid pressure was 35 which I guess it is supposed to be 15-20. They did 1.5 hours of MRIs where the found veinous narrowing in my brain. Then I stayed there for 2 additional days so they could make sure my body was okay on the Diamox after an initial scare. After the first dose I got the numbness and tingling almost immediately and I could feel it spreading. After about 2 hours it started getting hard to breathe or swallow and I started experiencing stroke symptoms.

They gave me Benadryl and told me I needed to try the Diamox one more time. The second dose didn’t give me those same symptoms so they prescribed it to me and sent me on my way. I was released on Sunday and started the Diamox on Monday.

Going back to the Keratoconus for a moment, my vision is so bad that I require a full corneal transplant in order to fix my vision. I can’t get this transplant unless 1. I get the IIH under control, and 2. I am in a super clean environment. Which meant my current living situation needed to changed. I found a new place to live that is literally 2 houses down from where I am currently at. The house I am currently in has roaches, mice, rats and mold due to the owner of the home not taking care of it.

So now, 1 week after being in the hospital and being diagnosed with the same disease that had my great aunt put into medical books and go blind in one eye, I am now moving. My body has not been acclimating to the Diamox well, though. I already had nerve issues in my hands and feet, which the Diamox has exacerbated. I have developed a HORRIBLE burning/aching/pins and needles sensation that happens at night. It is so bad it wakes me up from my sleep and lasts about 5-10 minutes. I got it in right knee, both hands and my left foot tonight and it is only 4:15am as I am writing this.

I am scared. I have horrible insurance and have also been diagnosed with PCOS. The ER doctors said “unless you want to end up like your great aunt, you need to lose weight”. I told them about my PCOS diagnosis and the nurse said “get on a GLP-1. There is no real excuse now that those are available”. Mind you I have horrible insurance and am legally blind. I can’t reliably work until I get the corneal transplants. My insurance won’t cover GLP-1s until I have a type 2 diabetes diagnosis. OBGYNs haven’t helped at all in the past and now the only one that took my insurance moved out of my area so I can’t even see one. PCOS makes it near impossible to lose weight due to insulin resistance and hormonal deregulation/rapid fluctuation. It also slows down the metabolism to a snail’s pace.

I just don’t know what to do. Everything seems to be working against me. I have worked on my mental health for a long time and the last few months was the first time I could confidently say “yes I am in a good place mentally to handle anything that gets thrown at me”. Now all of this BS is being thrown at me and I feel like a canoe with ducktape all over it being used as a cargo ship.

I am sorry, this was a lot of words. Thank you to anyone who reads all of this though!🫶🏾💖