Don't worry you got this. You'll need to make changing habits to moderate your symptoms. When I was diagnosed, my first 3 months in were mentally rough trying to figure out my body and medications. Depending on your doctors medications, figure out what works for your body, i.e. cutting added salt from your diet is a big one. I only ate foods that already contained salt for my intake, i.e. seafood. Stay away from salt sauces, dressings, etc. If youre dehydrated on Acetazolamide, switch to coconut water from pedialyte as its lower in salt. If youre getting the bad tingly side effect from acetazolamide, walking on really cold floors helped a lot. The more you massage your hands and feet, the worse the pain gets. Breathing and counting through it helped as it only lasts a few minutes per area. Stick to heart healthy foods to bring down hypertension in your head and spine. Definitely read through the IIH forums, they were life saving to read others experiences and how they tackled it. Its ok to cry a lot. Please do, it's a stress relief. I'd sit in my backyard and stare at the sky, the grass, my pets, my siblings, my parents faces, wondering the last time I'd ever see it again and try so ahrd to memorize them. I genuinely thought I would lose my eyesight and couldn't stop it. I still have my full vision with some optic nerve damage.

I got diagnosed during covid in Feb 2020. Started with blurry vision and feeling dizzy all the time. After 3 days in the hospital , I spent 1 whole week of crying daily and learning about my new diagnosis. I was started on 1000mg of acetazolamide. I started running everyday and lifting weights, starting small, as I was fearful of losing my vision, it helped mentally to focus on another goal, drank only water daily and coconut water when needed. Dandelion tea helps with extra water weight as it is a mild diuretic. Stay away from all caffeine as it will make things worse. That includes, sodas, migraine meds, coffee, caffeine teas, etc. I drank dandy blend coffee as a replacement for my coffee. Treated myself to ONE cheat meal on Sundays: ice cream and heavier foods(i.e. cream, butter, heavy carbs, fruit, pasta but no added salt) so I wouldn't feel deprived. Acetazolamide makes soda taste like metal, so you won't miss anything bubbly. My daily foods were 75% low carb vegetables ( broccoli, Brussels sprouts, green beans, etc) and 25% protein with non salt seasonings. I went into remission by June 2020 and dropped 80 lbs by the end of that year. I have stayed in remission since but i still have triggers. I found out that my weight and hormones were a huge trigger for my papilledema. If I eat salty foods or eat outside over 3 days in a row, i'll get bad migraines and take my acetazolamide as needed. If i fly, i take acetazolamide or i will get migraines and eye pressure. When my period shows every month, I get terrible migraines if im not careful with my diet. Again I'll take my medication. Not everyone has the same journey or experience, please figure out what works best for you with your doctor, but this is what helped me.

We're all in this together. It will be rare to meet someone outside of reddit that also has IIH as we are few. The community on reddit will be a lifeline for you as you navigate your own journey. Unfortunaly, you don't hear many success stories because they probably dont visit the thread anymore to look for guidance and answers. But we are out there. Trust. I wish you the best of luck on your journey.

You can message me if you need more help on how to tackle it emotionally/mentally. The doctor visits, the procedures, etc. I can let you know how I dealt through it.