I’m starting to give up.
I am 21 and I was only diagnosed with IIH recently. It started with me going to my eye doctor for my annual check up. I was seeing a new doctor because mine was so booked out, but I didn’t mind. She immediately noticed I had very swollen optic nerves and discussed the severity of the situation. She set me up an appointment with an ophthalmologist and spoke to my PCP to get me referred to a neurologist as quickly as possible. I then had an MRI/MRV which was negative, and an LP with an OP of 26. My neurologist confirmed IIH and started me on topamax despite my reluctance since many people I know have taken it and experienced horrible side effects. I took it for 3 weeks and only got up to 75mg before I had to stop. The severe brain fog, dizziness, clumsiness, exhaustion, everything was unbearable. What’s worse however is that I am on a progestin only birth control called Norethindrone. I haven’t had a period, since mine are so awful (I’m suspicious of Endo), in years and only a week or so after starting topamax, I began bleeding. Bleeding mostly massive clots. I’m now on 250mg twice daily of diamox yet I’m still bleeding. It’s been over a month of this. It’s painful and unsettling. The soonest I can see my OBGYN is October 3rd and that’s from being on a cancellation call list. My migraines are getting worse, my tinnitus is unrelenting, I’m struggling severely with hypersomnia (sleeping 12-16 hours a day) and I feel as though my vision is starting to get worse with floaters, streaks of light, and progressive blurriness. I’ve had a migraine for about 4 days now that won’t let up, no pain killers can touch it and it’s driving me crazy. I still drive, still work in a hospital with many 12 hour shifts, and still have school. I feel like my life is about to be ripped out of my hands because of this awful condition, yet my neurologist (not even, their nurse practitioner, I have yet to actually see my real neurologist) acts so chill about it all. I didn’t think it was bad when I was first diagnosed, sure I had headaches a lot, but I didn’t even know what it was. Now though, I can barely get out of bed even though laying down makes everything worse. I don’t want to lose my vision and lose the ability to actually start my life like a normal person. If I don’t get better, what would my purpose even be anymore? Sorry for the rant but I know you all understand, no one else in my life really does. Honestly those around me are getting fed up with how much I complain of headaches and especially of how much I sleep in a day. I don’t know what to do, I don’t want to do anything at all anymore at this point.