So Much More Than a Migraine: Idiopathic Intracranial Hypertension

June 16, 2017

by Amanda Ames

Everyone in my family wears glasses. I remember being in first grade and struggling to see the chalkboard and being taken to go get glasses and I was so excited to be like everybody else! Growing up I never had any vision issues that couldn’t be corrected with eyeglasses. Just before my 18th birthday I started having a lot of headaches all the time. My glasses broke, so I went to the eye doctor thinking I’d be leaving with a new set of frames/lenses. Hours later I was still there as doctors kept checking my eyes. I was finally sent an hour away to an opthamologist who told me I might have a brain tumor. I was sent for an MRI scan of my brain and then I saw a neurologist for the very first time.

He told me that I had pseudotumor cerebri (now it’s called Idiopathic Intracranial Hypertension). He performed a spinal tap on me. My pressure was so high fluid shot out at him when he started. I heard him ask for an ‘extender’ and the nurses exclaim they’d never seen a LP where one was needed before. It wasn’t too painful, and I laid down in the back of the car all the way home. He later put me on Diamox and I had occasional hospitalizations due to pain where they would put me on morphine. At one point I was taken out of New York and put in a hospital in Burlington,Vermont where I had three more spinal taps and they increased my Diamox to 2,500mgs and added Topomax (I dont remember the dose and I am no longer on it, as the first night I took it, it caused sleep paralysis which was absolutely terrifying).

I’m now 32. I am one of the lucky ones who’s vision hasn’t been greatly compromised. I still need spinal taps and I remain on Diamox. I see a chiropractor which helps me lessen the pain. – I was referred by my neurologist and it’s important to make sure that it’s safe for YOU and your own doctors give you that permission first. I take about sixteen prescriptions including pain medication, sleep medication, anxiety medication, and anti-depressiants. I still have major headaches nearly all of the time and I struggle to find anyone offline who can actually relate to what that is like. It’s much worse then an occasional migraine and it is 24/7. It doesn’t go away like a migraine will. I miss the days where a headache could go away with two tylenol and a dark room. I guess my biggest piece of advice is to just to keep fighting. Take it day by day. Hour by hour. If you don’t like your doctors, find new ones!!! If you get treated poorly at an ER, report the people involved. I also want to say that my story so far has been much less worse then a lot of my friends who have suffered through surgeries and shunts as well.

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