My Bulleted Epilepsy Journey
Epilepsy: a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.
This is the annoyingly long and drawn out (supposed) 'Reader's Digest' version of a story about an epileptic girl just trying to make sense of a senseless disorder.
- I started having seizures at 15 (jerks and absence).
- I had no idea what they were and didn't look it up because I was certain I could ignore it long enough that they would stop happening.
- They didn't go away... go figure.
- It took a YEAR for someone to notice and me to be officially diagnosed with Epilepsy.
- They were stress related, which meant I basically had to live like a monk for them to go away which was never going to happen.
- My mom started to get angry whenever I had them because she knew she stressed me out and blamed herself... honestly I blamed her a little too.
- I became delinquent with my medicine... I never wanted to take it because I resented the fact that I had to.
I missed three days worth of doses in a row and had my first Grand Mal seizure during an algebraexam.
- I woke up hysterically crying with teachers and my mother surrounding me.
- My boyfriend picked me up a few minutes later and we went to decorate for my mom's surprise 40th birthday party like nothing had happened.
- My medicine, when properly taken, continued to keep the jerks at bay, but I struggled to get my focal seizures under control, having an average of 50 a day... making it near impossible to get through a conversation without looking and making me feel like an idiot.
- Less than two months before my 19th birthday, I met the man that would come to love me and help me through it like I never thought was possible.
- He helped me realize my families drama increased my seizures dramatically so when I moved in with him just a couple of months later something incredible happened.
- I actually saw a decrease in my seizures... I had never seen a decrease before.
- Our first year was the most difficult because while other couples were lovey dovey their first year, we were busy working through family issues, health issues, and poverty.
- I never knew my father, but when I was 14 my mom married the man I still consider to be my dad, even though they split when I was 20.
- After more chances than she deserved at the time, I called my mom to let her know I loved her but would no longer be part of her life or allow her in mine when I was 21ish.
- With the help of my amazing boyfriend of then three years, I stuck to my guns and didn't interact with her or anyone else in my family when their destructive behaviors negatively effected my epilepsy and sanity.
- Amazingly, I had even less seizures,
- The more I became truly aware of the stressors in my life the better off I was mentally and physically and it was such a freeing and wonderful feeling.
- In January 2017 disaster stuck... I had another Grand Mal and it wasn't due to missed meds.
It came out of nowhere and it broke my spirit like never before. This was the first Grand Mal that Taylor (my boyfriend) had ever witnessed. It was around 11:00 PM and we were sitting in our living room having a conversation. Taylor was sitting in his recliner next to our back door and I was on the opposite side of the room on the couch.
He said, "You looked scared all of a sudden and I thought someone was breaking in at first. Then your eyes rolled into the back of your head and you started shaking, but it wasn't like big shakes. They were small and tight and you slowly rolled off the couch that way and continued. When it was over you had a panic attack for at least an hour where you paced back and forth and huffed and made weird noises and it was just like you weren't really there. I finally got you to lay down on the couch and I laid down on the chaise next to you and you fell asleep. Maybe 15 minutes later you woke up. Jordan, I've never been so scared in my whole life."
I remember vividly waking up and asking Taylor why we were on the couch because we didn't normally sleep there. The look on his face wasn't familiar to me and I know now looking back that it was pure fear and concern like he had never felt. When we woke up that morning he told me what happened. I vaguely remember the panic attack, but none of the seizure... only the reminder that was the severe pain in my jaw. It killed me to talk that day and the pain took two weeks to go away completely. Apparently my mouth was wide open for awhile.
Everything up to that point had been somewhat logical and followed suit. Jerks and Grand Mal's only happened with prolonged periods of missed meds while "zone out's" (absence) were common to accompany any stressor, change in subject or task, or early mornings and late nights. So, it only makes sense that I should've just zoned out. And I absolutely hate that Taylor had to see that, but I'm also so glad that he did. We both finally understood the possible severity of the situation.
- This confusing turn of events led us to another doctor (who turned out to be just as shitty as the last) who offered up no advice or possible explanations, just said that we could changed medications if we wanted and we did.
- We went from 1500 mg of Keppra XR to 100 mg of Lamictal and everything went back to normalish.
- June 2017 our lives changed forever when Taylor's mother suddenly passed away… in a time when I was on the outs with my mother she was a real comfort and losing her was one of the hardest things we had been through so far.
- Not much else happened until late 2018 when my mother and I started speaking again because my brother overdosed and then overdosed again a couple of months later.
- Getting my family back together and sort of on track wasn't easy on my epilepsy considering the circumstances, but we got through it better than I expected we could.
- Six years ago, I was having an average of 50 "zone out's" a day and at this point I could sometimes go an entire day without one and I never thought that was possible.
- January 2019 I started zoning out more at work and my coworkers insisted I go to the doctor and see someone new and it was a bittersweet experience.
- The first appointment I had with my new neurologist lasted nearly an hour and a half, while he seemed very intrigued by my story and the lack of interest from others to totally eradicate my seizures which was pretty sweet.
- Bitterness set in when he let me know that my previous doctors shouldn't have let me continue driving and I now could not drive until I was six months seizure free.
I was given hope when he sent me to have my first 24 hour EEG and an MRI to see if there was something unusual that we didn't know about before. The only abnormalities found were the ones we already knew about. So here I am, seven months later... no closer to being seizure free and no closer to getting my license back. Two new medications and $8,000 later, I've hit somewhat of a plateau with my seizures. But when I feel like giving up hope... I try to remember how far I've come.
Struggling with regular life along with health issues has never been easy, but I truly love my life and even if I can never drive again... that's a small price to pay to be safe. I just want to conclude by saying how incredibly lucky I am to be able to live my life with minimal interference. Those of you that struggle to do basic tasks each day, but carry on fighting are my hero's and I'm so proud of you!
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