hi y'all! Excited about joining this forum and being able to talk to others with IIH (since there aren't many of us! Lol)
Anyways, guess this is a place to do a little bio about myself. I was diagnosed feb. Of 2010 when I was 21 years old. I've always been overweight since my teens but in nov. Of '09 my momma passed away, and I'm one of those that like to eat when there sad so I gained abt 30 lbs in the course of like three months, so I was up to around 230lbs then. January is when I started to get symptoms (headaches, blurred vision, ringing of the ears etc) and actually thought i might of needed glasses cause of the blurred vision etc. Went to the opthamologist, he saw the papilledema, told me I either had a brain tumor or IIH (he didn't say it that bluntly but it still wasn't what I was expecting lol). Fast forward a few months after seeing an optha-neurologist and spinal taps and pictures of the optic nerve and everything else and I was definitely diagnosed with IIH. Well, it was super surprising finding out I had such a rare disease and then figuring out how the hell to live with it lol. Right now Im going to a doctor at johns Hopkins who is amazing, and also a pain specialist who is pretty good considering he's never even heard of IIH before (don't y'all get tired of having to explain to everyone what it is??lol). Even though I've lost 30 plus lbs, my symptoms haven't gotten better but actually worse. My doctor is thinking shunt surgery is in the near future unless it doesn't get better within the next cpl months. The worst part about having it are the headaches. I have a headache every day usually all day, and super severe ones usually every other day. I can't work, I can't go to school, my social life has changed dramatically, and it's all from me being In so much pain constantlly. I usually have to lay down most of the day, and if I do go out I usually can only stand up for abt 4 hrs at a time. Ive been on so many different pain Meds but they don't help as much as It should which is frustrating. But anywhoosies, the main reason why I joined here is I'd love to be able to talk with others that have what I do. Since it's so rare it's hard to find anyone that really understands ya know. Sorry for writing such a huge intro lol but thanks for reading! Love y'all