My name is Stephanie, about to turn 26, and I was diagnosed with IIH a couple months ago. After intense googling, I found this website and with about twenty seconds of courage, signed up and decided to introduce myself.
A little background about myself. On my first day of work after college graduation, I suffered a traumatic brain injury. Basically when I get nervous or stressed, I have the tendency to faint/pass out. It's truly a terrific ice breaker when meeting a new boss. Unfortunately this time, my head landed on a metal edge and I was in and out of hospitals for a month and a half due to the injury. With that, I have residual headaches from the accident and therefore, it's hard to tell where IIH begins and ends.
Two months ago, I started to have problems with my vision, severe and constant pain behind my eyes, memory issues, balance problems, etc. Attributing it to the brain injury, I set up an appointment with my neurologist. He told me I had an ear infection most likely and it would go away in a couple weeks. I've never been too fond of my neurologist and decided to set up an appointment with my neuro-ophthalmologist anyway. This is when it was discovered that I had swelling and raised nerves in both eyes and was told I have papilledema. Went back to my neurologist with the results, and he referred to a place where I could get my MRI completed. I had a LP scheduled with him for the following week. Thankfully the MRI came back clean.
This is when I get upset. After receiving the all clear for the MRI, I arrived at the neurologist's office for the LP. His staff informs me that they lost the kit and will have to postpone the procedure. In addition, the neurologist is booked and I won't be able to get it done for at least another week. My mom had flown out from my hometown just to be with me, so it was upsetting to say the least. We asked if there was anything we could do and his office said we could go wait in an emergency room to have it done, so we did. For ten hours. Finally had the LP done. The starting pressure was 25, which I was told was a little high. Didn't feel a lot of relief either. They sent the CSF off to have more tests completed. At this point, I was also started on 500mg of Diamox two times a day.
Fast forward four days, I get a call from the emergency clinic where I had my lumbar puncture. The CSF they sent for tests showed growth on it, signifying an infection. I was not completely aware of what this meant nor why the doctor was so insistent on me coming back to the ER immediately. So there I was, sitting at work like a goober, saying "I'll try to get there within a day." Apparently not the correct answer because the hospital wanted to send an ambulance. Eventually, I made it back to the ER where three doctors stared at me. I will always remember the first thing one said to me, "If your sample results were correct, you should be dead or in a coma right now". Turns out, there had been a contaminant in my sample.
Back to the present, I've been on Diamox for just under seven weeks. I hate this medication with every non-exhausted fiber of my being. I've stopped driving, can no longer walk up flights of stairs without taking a break, tingles everywhere all the time, etc. I would be okay with the side effects if the medicine would help, but it hasn't. My neuro-ophthalmologist also hasn't seen a huge reduction in the swelling.
The hardest part about this is how isolating IIH can be and coming face to face with your own mortality. For friends, coworkers, and people you don't necessarily see everyday, it's very hard to explain it in a way that people can understand. With my personality as well, I don't like to depend on people or feel guilty sharing my issues with others so I've kept IIH to mainly myself, fiancee, boss, and family.
To conclude, my biggest pet peeve are doctors constantly telling you to lose weight. How the hell am I supposed to lose it at the rate you want if I can't move without pain and have no energy? Side note: I have changed my diet and it is coming off slowly, but still.