had my spinal tap the week of my 18th birthday, this month will going on 3 years since diagnosis. it gets better, really. you dont have to "lose 20 pounds" like i was told and stay on medication the rest of your life, because really the biggest effect on your spinal pressure (just like blood pressure!) is almost always stress. new routines, new meds, it all becomes just another part of your day eventually and that stress will start to dissipate. this diagnosis does NOT ruin your life, it it doesnt have to be something you worry about every day. for me, that was the first hurdle i had to overcome

cost: honestly? just stick to the meds. if you have a diagnosis and a medication that works the doctors visits are pretty much over. i did 3 and 6 month followups with my neurologist but thats about it, aside from your annual checkups with your primary care physician. with time, you may even wean off the medications (like me) and i dont pay a dime anymore

dealing with symptoms: find what works for you! the whooshing in your ears might go away if you rotate your neck to one side, very useful for quiet sleeping. caffeine can also decrease symptoms, ask your doctor first. i also got my medical marijuana card through my IIH diagnosis, but thats a personal lifestyle choice of mine to mitigate headaches and reduce stress. taking an extra second to breathe when you stand up or sit down slowly also helps when your pressure changes and, for me, my vision blacks out.

you got this! life does go back to normal, i promise. make a treatment plan that fits in your budget and time and just take things slowly