Acronyms I Could Live Without: IIH and PTC

September is Library Card Sign-Up month. It’s National Preparedness month. It’s also IH Awareness month. I don’t know how months and causes get assigned together, but it’s time to talk about IH – intracranial hypertension, a condition (some people call it a disorder or disease) that I was diagnosed with in 2009. This condition is also sometimes referred to as idiopathic intracranial hypertension or pseudotumor cerebri. Whatever you call it, I have it and always will.

This news article details how awful this disorder can be.

My story is not as awful, but at the time I was diagnosed, it was extremely scary. I was living by myself in Salt Lake City and I was plagued with what I thought were migraines. I had experienced very painful migraines for many years and was annoyed that these headaches were disrupting work and the rest of my life.

I remember like yesterday the weird mornings when I reached for my cell phone to shut off the alarm and could not see the numbers on the screen. The scariest event happened when I was helping a patron and when I looked down at the book we were reviewing, I could not see anything. Nothing. My vision blacked out for about 5 seconds. I was standing there, holding the book, fully aware of everything, but I went blind.

I scheduled an appointment with my optometrist, thinking that I probably just needed a new prescription. She looked in my eyes and asked if I had been experiencing anything strange with my vision. I told her about my increased headaches and weird black outs. She asked the ophthalmologist to take a look and I was told not to leave without seeing him for a full appointment. He did an ultrasound on my eyes and looked at them again. He told me he thought I had something called pseudotumor cerebri but that I should have an MRI and go see a sub-specialist at the University of Utah hospital. I called work and told my boss I wouldn’t be in the rest of the afternoon.

My sub-specialist, a neuro-ophthalmologist, confirmed the diagnosis after a six-hour appointment. The blessing and curse of a teaching hospital is that you see multiple doctors with various levels of training. Dr. Digre was excited to show her interns my eyes because I was a great example of what idiopathic intracranial hypertension looks like. My eyes were photographed, I took my first visual field test, and answered many questions about my medical history. I was then told I needed to have a spinal tap as soon as possible.

The easiest way to explain this disorder is this: we all produce spinal fluid but this disorder causes a build up of spinal fluid in our brains, which causes problems with vision, and if left untreated, can cause blindness. I am one of the lucky ones because I have been able to treat the disorder with spinal taps and medication. Many people require a shunt to drain excess spinal fluid from their brains.

The most annoying part of this disorder is that it is idiopathic, which means there is no known cause. And because so few people are diagnosed with it, it’s considered a rare disease and gets little funding from the government or pharmaceutical companies for research. I have to live with this disorder and self monitor for the rest of my life. I want a cure.

I’m not sure what we are supposed to do during IH Awareness month except to tell other people about our experiences and hope that other people will be properly diagnosed so that they can get the treatment they need.

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