Is it "just" epilepsy?

I was 16 years old when I had my first grand mal seizure. I was asleep in my bed and felt a strange sort of pressure on my right side, which I had felt before and attributed to "growing pains" of some sort. That strange sensation I had felt before usually was followed by a short twitch, which relieved the discomfort and pressure.

The twitch that kept twitching

But on that day, the twitch just kept twitching. I tried to call out for my parents but found I couldn't speak. I could hear that I was making a strange sound, the thing of horror films, in my attempt to breathe/scream. My vision started to fade out from the sides and I could feel the right side of my body spasming uncontrollably.

My seizure experience

Since my seizure was concentrated on the right side of my body, my face felt strange. Strange enough that my teenage brain kept thinking "well my face is drooping and I can't call out...I must be having a stroke!?!" I lost consciousness after some time. When I woke back up I immediately touched my face. All felt normal. I looked in the mirror and saw the same face staring back at me that I had for the past 16 years.

Slowly I made my way down the stairs and saw my dad. I told him I thought I had just had a seizure but wasn't entirely sure. My dad, being the calmest, coolest, and most collected person I have ever met, just told me to lay down and not worry. Meanwhile, on the other side of the spectrum, my mother found out and was an emotional mess.

A brain tumor? or epilepsy?

My mom's sister had died from a brain tumor when she was only 25 and had seizures on a regular basis due to the tumor. So, as a result, everyone in my family began to panic that I too was living with a brain tumor and was doomed to a similarly tragic fate.

After many appointments, tests and doctors, they found out that I in fact did not have a brain tumor, and explained that I had epilepsy, which could be controlled with regular medication for the rest of my life. At the time, I and everyone around me seemed so relieved that I didn't have a brain tumor or a stroke or something that would have had more complicated treatment options. I have always felt grateful for that Epilepsy diagnosis.

I know I'm lucky

I'm very aware that things "could be worse" and that "I am lucky." Now, as an adult, I still feel that way to a degree. However, I find myself feeling more anxiety as I approach the age at which I may want to consider having children, and what pregnancy complications come along with taking Lamotrigine for the past 14+ years... I feel anxious that there are going to be unexpected complications that I couldn't have anticipated a the ripe age of 16.

Getting consumed in my own emotions

I sometimes feel that I never got the chance, when I was first diagnosed, to mourn/grieve the diagnosis, because I was too busy feeling like I should be thankful and grateful that it was "just epilepsy." Sometimes, I feel that grieving process coming to me now, in later years. Recognizing that it's not "just" epilepsy, but a lifetime of adjustments, medications, doctors' fees, anxieties, and considerations that I can never fully escape from...

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America Survey yet?