The Face of IIH

The story of Amanda

I was having headaches pretty much 24/7. I went to the eye dr one day to get new glasses. I ended up spending hours there that day, and then being sent to a specialist a few hours away later that evening where I spent many more hours having tests done. They believed I had a brain tumor. They sent me for an MRI of my brain the next day….72 hours later I got the results back – no tumor. I was sent to see a neurologist about 2 hours away who did a lot of tests and then told me he belived I had Idiopathic Intracranial Hypertension (or pseudotumor cerebri as it was called 12 years ago). He arranged to do a spinal tap for me (or lumbar puncture). the pressure was high. the nurses were all in shock they had never seen anyone with high pressure before during a LP and had never seen someone have to use an extender to measure the pressure. It was so high CSF flew out when he attempted to begin draining down to a normal level. That day I was told I absolutely had IIH. For the past 12 years I’ve dealt with many CT scans, MRI scans, doctor appointments, countless eye tests and nearly 24/7 headaches (and often nausea too). And 99% of the people don’t get it. It’s always there. and it’s bad. it’s not migraine bad. migraines sound like a picnic compared to this pain!