Thursday, July 25, 2013

Interrupted

First of all, welcome to my new blog! This is just my introduction, however, it's going to be all about life... postictal of course. How to go on after your diagnosis of epilepsy, a wealth of information to arm yourself with when you're faced with people who don't understand, and hopefully a safe haven for those of you who feel alone.

First off though, I want to tell you my story.

When I was sixteen years old, I was diagnosed with hypothyroidism. I didn't think too much of it at the time, because as young as I was, the only thing it was affecting was my weight. So I started taking medicine for it, and I slimmed down significantly.

   Afew months after that, I started really struggling in school. My doctor diagnosed me with ADHD. I was put on Strattera. On halloween night, twelve days before my seventeenth birthday, I had my first seizure. I was watching a movie upstairs at my grandparent's house, and my grandfather heard a crash. He ran upstairs to find me having a convulsive seizure. He tried to wake me after, (bad idea) and I can remember him saying my name... I could hear him, but I couldn't see him. My eyes were open, but my sight was gone. I was rushed to the hospital via ambulance, where I didn't recover from my seizure normally. I bit a nurse and kicked a doctor, and they decided to pump my stomach, in case I had overdosed. I hadn't, and after puking charcoal for longer than I care to remember, my tox screen came back negative, and after I don't even know how long of recovery, they sent me home. I don't remember much of the next three weeks.
   I was at my dad's house in the town next to mine, and while sitting on the porch, laughing and talking with my him, I had another convulsive seizure. This time I was taken to a different hospital, and again, did not come out of the seizure normally. I was pretty much comatose. The doctors at this hospital told my mom that I was doing it for attention, and that there was nothing physically wrong with me, just psychologically. They suggested my parents have me admitted to the fourth floor of the hospital, the psych ward. My mom refused, and demanded I get transferred to MUSC, the hospital in the city near where we live. I remember waking up in the children's ward in the hospital, but not much else, except for one blaring, vivid, amazing and beautiful moment: when the neurologist looked at my mom and said "Oh, she has post-ictal psychosis." Relief flooded me, and I fell back asleep.
   I awoke the next day, my head a little clearer, being carted into a small room with a bunch of computer screens and machines. The EEG specialist explained the procedure to me, and I don't remember much, but the cold hands, a tool scraping my head, and the burn of 10-20 paste against my scalp stands out. A couple days later, the diagnosis was officially in: Juvenile Myoclonic Epilepsy, Psychosis presenting in the postictal state. I spent a few more days there and had a couple more tests run. I was prescribed keppra, I honestly don't remember my dose.
   Now keppra, that's a whole other beast. My little sisters call it the frog throwing medicine. Why? Well, that's a story for another pie. Point being, I was mean, nasty and horrible to be around. Evn though my seizures had stopped, they changed my medicine. I was now on Lamictal, 200mg twice a day.
   Even though I was still depressed trying to cope with all of this, and not having anyone around me who understood, things got a little better. I was still having seizures about once a month, following my menstrual cycle, which for me, means aboout one normal week a month. But that normal week was a haven for me compared to the way I was before. At least I was remembering things, a little. I had about three more seizures before they just stopped.
   I was almost a year seizure free, when I got the stomach flu. And just like that, two seizures back to back. I don't even remember waking from the first one. Since 2010, I haven't had any convulsive seizures. Absence seizures here and there and holy crap the psychic seizures.
   This year I was diagnosed with Crohn's Disease, a horrible beastly condition if we want to be nice about it. Although I never like to consider myself disabled, my life has been undeniably interrupted. This is my story, my life, my dedication, and I want to share it all with you.

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