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At my worst, I wasn’t able to really talk or move. My body fought me on everything. My hair moving felt like it might kill me. Can you imagine that – my hair hurt! My head pain was beyond anything I’d ever experienced. Everything within me was screaming that something is wrong and that it was going to kill me.
I couldn’t function normally. It was terrifying. I’ve been to a couple of different ER’s and my PCP, only to be told that nothing was wrong and that it was all in my head. That was exactly the point. I knew it was in my head! That’s where most of the pain was. Three months later, they finally figured it out. I had gotten so dizzy at work, my face changed colors, my body freaked out and I couldn’t understand my customers, much less respond. They sent me to the ER. This pushed doctors to really look again.
Read more: My Life with Chiari Malformation
They did a spinal tap which relieved a lot of pressure and allowed me to comprehend and speak again. I’m still dealing with the migraines, even after steroids, months of nerve-deadening injections, botox, etc. Nothing seems to work. I’ve just learned how to maneuver so that no one else can tell. This is my new normal. I wish everyone else the best of luck!
