Epilepsy - @raineymad

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"Hi, I'm Rainey and I live in Fort Worth, Texas! Although I wasn't formally diagnosed with epilepsy until January 2014 (age 20), I have been having seizures since I was thirteen years old (I was told they were migraines). I had two tonic clonic seizures within three days in January ‘14, so at that point, I still only had a pediatric neurologist, but we had no option but to go and see him. When I went to see him, he mentioned "epilepsy" and I remember thinking, "No, I don't think so. Just refer me to the other doctor." I immediately started an anti-epileptic medication. So when I went to see the new neurologist, my diagnosis was: Temporal lobe epilepsy, right side, apparently "text book case" (and I'll never forget that he said that.) The EEGs, MRIs, CT scans, PET scans, lab work, hospital stays, experimenting with medications, etc. began. I started visiting Cleveland Clinic in Ohio for a second opinion in 2016- medication wasn’t helping. Long story, short: February 2017 I had an SEEG at CC, where they inserted 19 electrodes into my brain to pinpoint where my seizures were coming from! Cleveland Clinic felt confident about all of the information they were able to collect from this crazy ol' brain of mine in the two weeks I was there. I returned in six weeks for my brain resection! The surgeon resected my superior temporal gyrus (right side) which required a nine inch incision and a craniotomy. I was in the hospital for only three days after brain surgery. How wild is that?! My resection was April 2017. Unfortunately, it was unsuccessful. My seizures have lessened in severity, usually, but have increased in frequency. Here’s to seizure freedom (one day). I truly love sharing my epilepsy journey with others- I hope to educate people & empower others to break down the stigma." @raineymad

Epilepsy

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