My Epilepsy Story

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Maci’s Story

With November being “National Epilepsy Awareness Month” I thought now would be an appropriate time to put something out there about the invisible disability that I have lived with for about 10 years.

Until earlier this year when Disney’s young adult actor, Cameron Boyce, passed away in his sleep from a seizure, epilepsy hasn’t gotten much press.  Fast forward to today and there’s still not much out there. There’s all these things for cancer and autism and all these other diseases/conditions, which don’t get me wrong they are all deserving of everything good they get/do, but I guess I just personally feel that for an “incurable” disease that doesn’t have many known causes you’d think scientists and medical professionals would have a little more interest in the matter. Nevertheless, here is my story.

Back in 2008, I was 13 and in seventh grade. I remember the mornings before school feeling my heart race, my hands shaking, my chest heavy, trying to focus on my breathing. Little did I know this would become my aura. This happened to me on/off for about a month before actually having a seizure.

The following months were the worst. Multiple seizures a month, usually at home, but also in the bathroom, in my friend’s mom’s car, at school, etc. Being 13 and as shy, reserved, and as stubborn as I am I always tried to keep it a secret, I never wanted anyone to treat me differently or feel sorry for me. I wanted to be as “normal” as possible.

By the time I reached high school I had finally found the right medication (Depakote) for me, which just so happens to be the worst for women. I went all four years without having a seizure, the doctors had thought I had grown out of my epilepsy and allowed me to come off my medication. Four months later on my 18th birthday (days before graduation) I had a seizure and fell off my bed. Leaving my face bruised and my lip and tongue cut up.

Following high school, my seizures were for the most part under control. I went 2 years without having a seizure, then on Easter of 2017 I had another seizure. After that I decided I wanted to try to find a new medication since my seizures weren’t controlled and I wanted to get off Depakote before being ready to have kids rather than wanting to have kids then figuring it out. So I switched from Depakote to Vimpat.

Easter of 2018 I almost passed out at church because of an extra medication a doctor put me on for migranes, but it slowed my heart rate down so much I couldn’t stand. December 2018 I was working very early days and had a seizure in the car on the way to work (thank God I work for my dad & we decided to carpool that morning), that was the first one where it was just my dad and I. Last, but certainly not least March 2019, I had just come home from a 5am workout with my family and instantly felt my aura and laid on the floor. I ended up having three seizures back to back and for the first time ever, I stopped breathing.  Sadly, I was put back on Depakote.

Fast forward to present day, I have already been in the EMU (Epilepsy Monitoring Unit) and have had multiple MRI’s and EEG’s (which have all come back normal). At this point in my life I have to accept that this is a condition I have to live with and I will probably be on medication for the rest of my life. That being said I will admit my fears epilepsy gives me:

  • My medication will have an affect my future children
  • My epilepsy might be passed on to my children
  • I feel like I won’t ever know the real me (off medication, away from epilepsy)
  • I have been on medication since I was 13, which in my opinion is a very crucial time for growing and your body is changing so rapidly that I really don’t think I know what its like to be off of medication.

Being “seizure free” (8/9 months) is a good-ish feeling (minus the fear of not knowing when you could possible have another seizure). However, with that being said I will never get over how horrible the system is. There aren’t enough neurologist and I have not even had the chance to see an epileptologist.  My neurologist has cancelled more appointments on me than I can count. Is it because I’m not an urgent patient that requires a lot of care? Just because I am not having seizures doesn’t mean that I am not having other problems with my epilepsy.

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We are an International, non-profit organization that serves to bridge the gap for women and girls diagnosed with epilepsy.

Stay Updated

Receive valuable content and personal stories from other women and girls just like yourself.

Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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