My Story IH Awareness Month - Day 2

My IH story begins with hearing the words pseudotumor cerebri in 2006. If you look back in my blog, you may see a post about my neurologist freaking me out saying I probably had a brain tumor in 2006. It wasn't the case. I had a string of events and worse and worse headaches. I did all of the testing for IH up to a lumbar puncture to diagnose because they didn't find optic nerve swelling so they eliminated IH.

Now that I know more about IH, I know that I most likely was showing symptoms there but instead they went on as headaches that couldn't be treated for years. I truly mean years and years...just over 6 years.

I wasn't diagnosed until early September 2012. My diagnosis was pure coincidence. I went to get new glasses and they thought my pressure was too high from the air puff pressure test. I had been seeing an ophthalmologist every 6 months or so do to my RA and the meds for it so I never expected anything to show. Even during the exam for glasses she said it could be a bunch of things and brought up pseudotumor but dismissed it because it had been eliminated before.

I went to my ophthalmologist a few days later and he said oh everything looks fine, it could be the test or a weird day but let's schedule a follow up with visual field test next week. Had I done it that next week, I may have not been diagnosed. Due to an emergency or illness the ophthalmologist canceled that appointment. By the time I could do the test when he was there after his vacation, it was a few months later in August.

I went in for my visual field and happened to be having horrible head pain. My test was a little off of my normal and my optic nerves were a little swollen so he said come back again in a few days to see if it was a random thing and in a meantime have a head CT. I came back with a blind spot, a huge headache, double vision and swollen optic nerves. I was sent directly to the hospital for an MRI that night. I came back the following day and all the symptoms were worse but the MRI was clear. My symptoms had gotten so bad that my neurologist was in a medical conference in another city and when my ophthalmologist didn't hear back from him, they kept calling and saying they weren't letting me leave the building until he told me what ER he wanted me at right then. They kept calling...for hours. The office was closed when they finally convinced his answering service to give up his personal number because they weren't letting me leave. This only panicked me more.

In the end, I ended up with my diagnosing lumbar puncture. It wasn't until almost 48 hours later in the hospital, but I got the first of many that have come since. My blind spot is permanent and (not uncommonly because I tend to have weird symptoms) it's not even really IH related. It could be but it's a rare place for a visual field defect and even rarer to have it with IH. It was every ophthalmologist in the eye center came to look because no one had seen that in person weird...like they took out an old dusty book to find it weird lol

Had I had the lumbar puncture in 2006, would it have not happened? Would my symptoms be less or more controlled? It's possible. It's also possible they could have done it and my pressure was fine that day. Outpatient spinal taps aren't necessarily something that gets scheduled right away. I've waited two weeks before even with a change in symptoms. By the time I got in back in 2006, I could have leveled off or have been in a good place and been normal. Looking back I wish he had done it or I insisted to rule it out because then there aren't 6 years of whatifs....

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