The Rare Disease that keeps me under pressure
For years I would state that I wasn't feeling well, and for years people would say, " You look okay to me." You see when I say I didn't feel well, I meant I felt terrible. I was so tired, so sleepy all the time, nauseous beyond reason and my head always felt like it was going to explode. Daily activities or sudden movements would make my head feel worse. I manage to stay active even though it is pretty hard to explain how I feel. To this day I still default to "I have a headache", even though, I have more than a headache.
I wasn't feeling well, and for years people would say, " You look okay to me."
One day I was staring at a tv and noticed I couldn't see it. Everything was blocky. The very next day I went to the eye doctor. At 19, I was an active and healthy, 5'6 133 lb young women I received my first pair of glasses. At the time, my eye doctor noticed swelling in my optic nerve. It remained that way for years.
For years my eye doctors noticed the issue in my optic nerve but it wasn't until last December, at the age of 30, my eye doctor took it upon herself to schedule my appointment with a neuro-ophthalmologist. The neuro-ophthalmologist noticed the same swelling and stated I had papilledema. He also told me I needed an MRI and to see a neurologist. The neurologist then sent me for a lumbar puncture (spinal tap).
After a spinal tap, and MRI, the results are you have IH. Intracranial hypertension (IH) is the general term for neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. You might have heard it called Benign Intracranial Hypertension and Pseudotumor Cerebri. Symptoms mimic a brain tumor, but no tumor is present.
While there's no cure for it, there are steps one can take to lessen the symptoms. Sitting up makes my symptoms worse. Some days, I feel fine, other days - I feel as though I have a stomach bug from hell. IH is an expensive disease and you honestly don't want to know my medical bills over the last year. It can cost you more than just money, but time. I am frankly lucky that my vision is not getting worse and has actually improved. I'm just happy to have a name for it.
As a way to raise more awareness about this illness I have started to create a simple sticker that you can purchase on my website - shedesignsthings.com, under Give Support. that go to support the Intracranial Hypertension Research Foundation.
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