I am diagnosed with idiopathic intracranial hypertension (IIH) also known as pseudotumor cerebrei. While I was going through the diagnosis faze, I was just inundated with nothing but medical journals and very technical websites because it is such a rare disease. As a result, I wanted to start a blog and a Youtube channel so that other people that are diagnosed with the disease don't feel as alone as I did when trying to find info.
My goal of this blog is to update it and give other sufferers a non-medical perspective. Of course with it being a disease there will be some medical words, pictures and videos such as the one above, but I, of course, will try to explain it as simply as possible. The video above is a cat scan of my VP (ventriculoperitoneal) shunt, which is basically a machine that is attached to a tube that goes into the ventricles of my brain to siphon off the excess fluid on my brain. The catheter then runs inside my body and into my stomach cavity where the excess liquid can be absorbed.
IIH is a rare brain disease. It causes a buildup of cerebral spinal fluid (CSF) in the ventricles of the brain which causes the brain to act like it has a tumor, hence the alternative name for IIH, pseudotumor cerebrei, No one knows why the brain produces excess CSF and there is no cure for it, only treatments such as surgery or medications.
Once your diagnosed, you're stuck for life in a sorority that is not of your choice. Those of us diagnosed are all stuck with it and only have each other to lean on. Not many other people can relate to having the symptoms of a brain tumor, but not actually being able to do anything about it, because the tumor isn't really there.
It isn't easy.
But it's very hard for it to get any worse.
Welcome to the hell that is IIH.
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