Megan & Juvenile Myoclonic Epilepsy

  • August 13, 2020
  • 7
In this article

She mixes her time between studying to become a Special Education teacher and advocating for epilepsy awareness, find out more about Megan’s Juvenile Myoclonic epilepsy story below. 

How I spend my time

I'm currently a senior at Nevada State College majoring in Special Education. This fall I'll actually be teaching students, which is so exciting! I'll be fully licensed with my own classroom next January (pandemic willing!). When I'm not doing school-related things, I like to spend my time playing video games, working with my service dog in training, and binge-watching my favorite TV show.

My epilepsy story from the beginning

I was diagnosed with Juvenile Myoclonic Epilepsy at age 13. I had 3 seizures in my parents bedroom whilst telling them goodnight. I stopped breathing and my mother had to perform CPR on me while an ambulance was on its way. Thankfully my mom is a registered pediatric intensive care nurse, so she went into work mode and saved my life. A couple of nights in the hospital and countless tests later, I was sent home with a diagnosis that would forever change my life.

The first few years after I began having seizures were the hardest for me. Being the "girl with epilepsy" in school killed my social life. I went from being popular to being an outsider within days. I would have seizures during class and would be sent home to rest. I was missing out on fun activities, but I also lacked friends who understood what I was going through. That inspired me to go looking for support online. I created my “Away with Epilepsy” social media page to find support from others with epilepsy. 

Finding people of all backgrounds and ages who understood me was amazing. I essentially gained a whole new family from people who supported me and taught me the ropes of how to navigate life with epilepsy. When I was in a better place, I began giving support just as I was given. I also began advocating for more awareness for epilepsy and educating people about epilepsy. I felt it was my duty to speak up for people with epilepsy everywhere.

My story became a comic book

My work in advocating for and supporting people with epilepsy eventually led to my story being immortalized in a comic book. Jumo is a company that makes comic books that explain medical conditions in a fun way that kids can understand. I was part of a multi-book series about epilepsy. My book explained how I coped with having epilepsy as a teenager and was geared for that age group as well. I traveled all over the country promoting the book and spreading my story on national television and during live events. I made so many more connections and friends during that time, which was great! 

I eventually made a connection with both the national and Nevada chapters of the Epilepsy Foundation of America. I now volunteer with my local Nevada chapter regularly. I've held multiple fundraisers for them as well. They are one of my biggest supporters and I love being able to give back to them.

My seizures and treatment path so far

I have partial and generalized seizures of various types. After failing multiple medications, I had a vagus nerve stimulator device surgically placed this past June in my latest effort for seizure control. I also recently began experimenting with medicinal cannabis to work with my device and medication.  I hope it will improve either my seizure control or side effect relief. Time will tell if either of my new treatments will help me have a better quality of life.

Even though I'm not as active as I used to be in the epilepsy community, I still keep up with my followers and try to post every now and then. I've seen that a new generation of teen epilepsy advocates have risen up and I'm so happy to see that I helped inspire that with my actions as a teen. I love knowing that as I begin my career and become busy with different things, my work will continue on and hopefully they will do bigger and better things than I did for epilepsy awareness and support.

The proudest moments from my epilepsy journey

I'm most proud of how much of a difference I made as a teen. I get messages from people all over the world telling me how my page has impacted them. There are articles written in different languages about my story and advocacy work. Thousands of dollars have been spent on events and research that help so many people and I helped raise that money. People underestimate the power kids and teens can have on the world.

The most significant moment with my epilepsy  

My most traumatic seizure experience happened a couple years ago. I was shopping with my mom and brother. The last thing I remember was walking towards the door to leave. Next thing I know, I'm waking up on the floor of the parking lot of the store. I'm overcome with strong feelings of fear and confusion. A fire truck full of EMTs was there checking over me. It turns out that I began having a partial seizure on our way to our car. I apparently was walking as usual, then I stopped in the parking lot. My mom couldn't get my attention. I then dropped to the ground and began having a generalized seizure.

This experience is my worst and most memorable one. I've never felt such an abundance of emotion after a seizure. It was like the world was ending. I never want to feel like that again.

How I’ve tracked my epilepsy:

I've tried multiple ways and apps to track my seizures and medication times. None of the prior apps were better than me just using a notepad and pen.

But now I’m using Epsy and it's my favorite app I've ever tried for managing my epilepsy. It helps me track side effects, take notes on side effects and seizures, count seizures, and mark medications that I’ve taken or missed. I use it daily and it's helped me be better about my medications and logging my thoughts.

My favorite feature is the seizure logger. I have very specific symptoms when I have seizures and they're not common symptoms. I love that I can explain my symptoms as specific as they are. That helps me relay that information to my doctor, since I can go back to read those notes.

The public perception of epilepsy:

I feel like people perceive it as something that is taboo. People fear watching a seizure, so they avoid you in case you have one. Some cultures also believe a person having a seizure is possessed. Misconceptions and unfounded fears cause added stress for those of us living with epilepsy. I manage this as best as I can while educating others.

My message to others with epilepsy:

My message is to do things. Do things that make you happy. Do things to keep yourself busy. If you do things, you won't have time to be depressed. 

Epsy for Android

Megan has been using the Epsy app for Android to monitor her seizures and medications, you can download Epsy in the Google Play store by clicking here. Follow Megan on Instagram at @awaywithepilepsy.

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