November is Epilepsy Awareness Month, which recognizes those diagnosed with the disorder and the challenges that come with it.
When people first hear the word epilepsy, they think of grand mal or tonic-clonic seizures, in which someone’s limbs shake involuntarily due to the imbalance of neurons in the brain. While that’s true, there is more to the disorder than what the average person knows.
There are other types of seizures, such as a focal seizure, where the person recognizes they are having a seizure, but their awareness is impaired. They might feel dissociated or zone out during a conversation. These symptoms usually start and end at one point of the brain; however, on occasion, they spread to more than one part.
You might be wondering why I know all of this. Well, it’s because I’ve been diagnosed with epilepsy since I was 1 year old. I could go into the long version of my story, but it’s long, so here’s the short version.
I was playing in the living room supervised by my mother when she noticed I was moving my arms up and down abnormally. As a medical professional, she recognized I had infantile spasms, or an infant with epilepsy. She took me to a neurologist to confirm my diagnosis and I was put on different medications to stop seizures.
Unfortunately, the medications weren’t working until they found one that was effective, but it wasn’t approved by the Food and Drug Administration in the United States, so my neurologist had to source it from Canada. It worked and the seizures eventually stopped after six months until I was 3 years old when I had a relapse. I went through the same process again, and after a year, I was clear.
Thirteen years later, I woke up one day and I couldn’t speak for five minutes. My parents realized I had a new form. I was tested, and it turned out I had an abnormality in my brain, meaning I had new medications to stop a seizure from occurring. Now, I have annual visits to discuss treatment and tests. Recently, my epilepsy turned into seizure activity, so I needed a second drug to calm it, and it works.
The interesting part of my condition is that my family and doctors still don’t know what caused the infantile spasms. It’s not genetic because no one else in my family has it. I never had any brain damage or an infection that causes seizures. I guess we’ll never know.
Four factors come with epilepsy: memory, speech and language, executive function and attention. In my situation, speech and language, located in the temporal lobe, on the left side, were impaired.
This means speech is delayed; people understand what someone is saying, but it’s hard to come up with a response. They speak in sentence fragments instead of whole paragraphs, like the average person. The difficult part is finding out which lobe holds the seizure activity.
The other three factors deal with memory loss, located in the hippocampus, where people with epilepsy experience difficulty recalling facts because seizure activity disrupts memories. If the activity is based on attention, located in the frontal and parietal lobes, the person may be inattentive or restless. When it’s executive function, located in the frontal lobe, epileptics have trouble planning, thinking effectively or performing a task in a new environment.
I could go into more detail about the different types of seizures, but it’s a lot to unpack and there are still things I don’t know about epilepsy. What’s awful about it is that there is so much stigma around this disorder, which is why no one talks about it. This is why I’m here, so people can better understand it.
Hopefully, you didn’t find that too long a read. I just wanted to make sure that readers who are in my shoes know they aren’t alone. May you have a wonderful Epilepsy Awareness Month.
