What's It Like To Have IIH

    Disclaimer: I am not a doctor. I have no medical background beyond being in and out of medical offices. I am just relaying what I have learned from my doctors and the internet, this article is not meant to be a diagnosis of any sort. If you suspect you have IIH, please speak with your doctor.

    IIH stands for idiopathic intracranialhypertension. In non-medical speak, it means that you have unexplainable pressure on your brain. It is caused by excessive cerebral spinal fluid (CSF) on the brain, however doctors do not yet know what causes the excess CSF.

    Some people call IIH a disease, some call it a condition. I, personally, call it a pain in my ass. IIH not only causes intense headaches, but it can also cause so many other issues with your body. For example, earlier this year I was hospitalized and had a urinary catheter inserted because my nerves gave out in the lower part of my body.

    Your brain controls everything in your body (duh) so when your brain starts malfunctioning, so can the rest of your body. This not only means that you are prone to very horrible headaches but also to other nerve related issues.

     IIH is like having your brain squeezed from the inside out at all times. No matter how much ibuprofen or Tylenol you take, there is no relief beyond actually removing the pressure and excess CSF from the brain. As a matter of fact, you can have so much CSF that it will leak via the eyes and ears. And if that sounds painful, that’s because it is. I once had CSF leak from eyes, it hurt to open my eyes, it hurt to close them and my cheeks felt like they were on fire as the tears rolled down them. You can normally tell that it’s CSF by how it burns and hurts, however you can test the suspected CSF with a diabetes glucose meter. If you don’t get a reading, its tears and you need to see a doctor. If you get a reading, it is most likely CSF, and you still might need to see a doctor anyway because your pressure is way too high.

     Overall, IIH sucks and if you suspect that you have IIH, please take with your doctor to get an MRI/MRV and a spinal tap in order to rule out any other serious medical problems. Remember that another term for IIH is pseudotumor cerebrei and you need to rule out an actual tumor, as IIH mimics a tumor.

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