Tori’s Story

In October of 2013, I had my first grand mal seizure. The day leading up to the traumatic night was completely normal; I went to school, attended volleyball practice, and then went to the high school soccer game that night. I was a freshman in high school at the time, so any sporting event was a big social gathering. It was just a boring school night so I went to bed and that was that. Little did I know that October 9, 2013 would be the day my life changed forever.

I was awakened about 10 o’clock that same night to my parents shaking me. I was so out of it and had no clue what was going on. My mother wasn’t quite sure either; all she knew was it wasn’t good. So I was rushed to the ER and treated immediately. Doctors and nurses swarmed around me like little bumble bees busy at work. An x-ray and CT scan later, I was back in my room with my parents and a doctor. After a few seconds of silence, the ice was broken with the word seizure. I thought I was ok at the time, but obviously, the doctor didn’t. He insisted I be taken to a larger children’s hospital in the area for further testing. All I remember from the trip up to the new hospital was the paramedic asking my mom for directions. (He’s the paramedic, you would think he would know where to go!) After spending two days hospitalized, and an EEG and 2 MRI’s later, my team of doctors were able to create a diagnosis. I have a cyst on the right frontal lobe of my brain that interferes with brain activity. Its 4-5 cm in diameter and not growing, so it’s not too concerning. I was completely recovered from the episode, so they discharged me.

Fast forward to January of 2015.

I was a little over one-year seizure free when my biggest fear (having a seizure at school) occurred. The last thing I wanted was for all of my friends, peers, and teachers to witness my convulsions and spasms. On January 27, I had my second grand mal seizure. I made it through my whole day until 8th period, when I seized. One minute, I was taking notes, and next thing I knew I was in the school clinic with my mom and school nurse hovering over me. For a while, I felt as if no words could come out of my mouth but later discovered it was just my body reacting to the trauma I experienced.

There are no words to describe how your body feels after you have a grand mal or tonic-clonic seizure. The throbbing pain left in your head afterwards is indescribable. You refuse to look in the mirror for days because, in my case, I had broken blood vessels all over my face. Not knowing where you are and how you got there is absolutely heartbreaking. Once you put all the pieces of the puzzle together and realize what happened, you are overtaken by thousands of emotions, leaving you speechless. I often found myself randomly in tears because all of the information is just so much to take in.

At this time, I was not on seizure medications because I’d only had one epileptic episode. A week later, my neurologist (who is the absolute best!) decided to do a 24-hour EEG with video monitoring. According to the test, I still had tons of epileptic activity. At this time my doctor decided it would be smart to medicate and keep my seizures under control. I now take Levetiracetm (Keppra) twice a day.

Fast forward to 2016.

This year I hit my one-year seizure free milestone and couldn’t be happier. There have definitely been bumps in the road. For example: severe mood swings, dizziness, nausea, and many months of bad migraines. I have had multiple infusions to cure my migraines, and they help for certain amounts of time but just don’t seem to cure it. This Spring in particular, I experienced some strange things. For approximately 2 months my limbs would randomly go numb and get all tingly. After visiting my neurologist yet again, she seems to think I still have epileptic activity occurring. I’ve come to accept that this will be something I will be battling for many more years.

If you’re still reading, thank you for reading my journey and battles. Epilepsy does NOT define you, it is simply a part of who you are as a person. I have my ups and downs, but I come out stronger than ever before. Yes, people look at you differently knowing you don’t fit the status quo, but don’t let it bother you. I believe epilepsy needs a CURE and hope one day there is one. Lastly, I would like to thank my family and all of my friends for standing by me throughout everything; you made every challenge 10 time easier to face.