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My Scariest Experience With Benign Rolandic Epilepsy
(Mentions seizures, anxiety, and guns)
My name is Jaeden. I'm 13 years old, and I have a neurological condition called Benign-Rolandic Epilepsy. At least that's what the doctors think it is.
It started when I was around 8. I was about to fall asleep, when my mouth went completely numb. I just stayed in bed, and the feeling went away after a few minutes.
This kept happening every month or so, and I was getting kind of worried, so I told my mom. She immediately set up an appointment with a neurologist, and she had no idea what was wrong with me.
As time went on, the numbness got worse. I would feel shocks through my body (specifically through my left arm and leg) and when my mouth went numb, the whole left side of my face would droop down to the side-- as if I was having a stroke, and when I would try and talk, my speech was slurred. I would also drool a bunch because I was unable to swallow.
Over two years had passed of this happening every month or so. By this time, I had already had an MRI scan, an E.E.G. scan, and had been diagnosed with Benign-Rolandic Epilepsy. However, I'm not taking medications for it, and my neurologist still isn't entirely sure. If it is Benign-Rolandic epilepsy, that means it should go away by the time I'm 15. And so far, it's only caused me mouth numbness and a shock-y feeling through my body. These sensations went away in less than two minutes.
But summer break 2021, the worst episode happened.
I was home from school obviously. My younger brother, who was 9 at the time, was outside and couldn't hear anything going on inside. I was sitting in the living room with my mom, when she got a Teams call from her boss. She answered, and since I was sitting right by her, I could hear everything.
"Jeralyn (my mom's name), call your husband and make sure he's okay. Paul (my dad's boss) just got shot and killed by an ex-employee. We don't know who else got hurt, and the shooter is on the loose!" My mom's boss said to her, practically yelling frantic.
My mom got up from the couch and called my dad.
Those 30 seconds that I was waiting for my dad to answer were the worst of my life. I was crying and screaming, thinking my dad just got killed. My brother was still outside.
"JOEL!? ARE YOU OKAY!?" My mom yelled when he finally answered
"What? I'm fine. I'm just at work. What happened are you okay?" My dad answered, completely oblivious.
"Come home right now. Paul just got shot. I'll explain when you get home," My mom said, crying tears of joy. It was so scary. I thought my dad was dead, and I didn’t even get to say goodbye to him before he left for work.
Dad arrived back at home safe around 30 minutes later, and my mom explained what happened. Everything was fine again.
Until later that night when I was in bed.
The doctors think that stress from thinking my dad died is what caused this episode to happen.
I was about to fall asleep, when my mouth went numb. I got out of bed, drank some water, went to the bathroom... but when I looked in the mirror my face was completely distorted. I looked like an alien. Then suddenly I couldn’t breathe or talk or move. My mom came into the bathroom yelling. I was completely paralyzed. The last thing I remember before fainting was my mom yelling to call 911 and telling me that everything was going to be okay.
When I woke up, I was on the ground. I was surrounded by my mom and dad, and about 5 people I had never seen before wearing masks and gloves, including my neighbor who is also a doctor.
“Where am I?” I asked, my vision was foggy and my ears were ringing
“You had a seizure, honey, you’re okay now though,” My mom said. I was crying so hard. The medics left and my mom slept with me on the couch.
That was the scariest day of my life. It kind of traumatized me. Just like how people get PTSD from heart attacks. Now whenever anything feels a little off anywhere on my body, I immediately start panicking, thinking I’m going to have a seizure again. I won’t be able to breathe or move or talk. It’s scary. I live every day in constant fear 24/7, but there’s nothing I can do about it.
The episodes have gotten less intense since then. It sounds like it wasn’t that bad when I describe it, but that day was the worst day of my life.
Thanks for reading this story. I hope it reaches other kids who have had these kinds of scary experiences.
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This article has 0 comments.
The episode I had is not something that happens to kids with Benign-rolandic epilepsy. It was a unique episode that I had that I thought I would share. This is not meant to scare other kids that see this who have Benign-rolandic epilepsy.
The term "Benign" refers to the fact that most children will outgrow it before they're an adult.
Seizures associated with benign rolandic epilepsy are usually brief — no more than two minutes in duration. They tend to occur infrequently and most often at night. The child may maintain full awareness while the seizure is happening.
Benign rolandic epilepsy is characterized by twitching, numbness or tingling of the child's face or tongue, and may interfere with speech and cause drooling. Seizures spread from one area of the brain and become generalized.