Living With Epilepsy

Living with Epilepsy

“More people live with epilepsy than with autism spectrum disorders, Parkinson’s disease, multiple sclerosis, and cerebral palsy – combined.” – Dr. Joseph R. Sirven, The Epilepsy Awareness Foundation

In the spring of 2009, I focused on the typical things that high school juniors dwell on: prom, finals, who’s dating who. While I knew that seizures and epilepsy existed, I didn’t know much about them. That was all about to change.

My mom and I were on our way home from the commissary, a monthly trip that had turned into a mother-daughter outing for us. I’d been feeling strange for a while; the kind of strange that’s hard to comprehend, let alone explain, but I knew I had to try.

“Mom, I feel like I’m losing time.”

She kept her eyes on the road, but I could see the bewildered look on her face.

“How so?” she asked.

“I don’t know. It’s hard to describe,” I said searching for the right words. “It takes me forever to do things, and I don’t even notice that time is passing.”

“Hmm, I’m not sure, but I don’t think daydreaming is a serious health condition,” she said jokingly. That was the way my family dealt with everything: through humor.

“A seizure is a sudden surge of electrical activity in the brain, which usually affects how a person appears or acts for a short time.” – Dr. Joseph R. Sirven, The Epilepsy Awareness Foundation

After we got home and got the groceries put away, Mama, Nana, and I sat down to lunch.

“Crap,” I said, “I forgot to grab a fork.” I got up from the table.

“Shelly! Shelly!” both women called in unison.

I looked at them, taken aback by their change in demeanor.

“What is it? What’s wrong?” I asked.

“Why are you just standing there, groaning?” Mama asked.

I looked down at the ground and realized I hadn’t moved; I was still standing in front of my chair.

“I- I don’t know,” I replied.

“Didn’t you hear us talking to you?” Nana asked.

“No, I couldn’t hear anything. I thought I was on my way to the kitchen.”

“Twila,” Nana said, “that looked like a seizure. You need to take Shelly to the doctor.”

That was the first of many seizures my family witnessed me have. It was the catalyst to a journey with more questions than answers—answers that I’m still looking for today.

“Epilepsy and Seizures can develop in any person, at any age.” – Dr. Joseph R. Sirven, The Epilepsy Awareness Foundation

Over the course of the following year, I had several more seizures at home and in public. They started as focal seizures (when epileptic activity affects one part of a person’s brain); my worst seizure was a grand mal (which affects the entire brain). I’d found a neurologist (a specialist in the anatomy, functions, and organic disorders of nerves and the nervous system), and I went through a series of tests: EEG, CT, and two sleep studies. They all came back normal.

Dr. J diagnosed me with epilepsy, as there was no denying that I was having recurring seizures. As for figuring out the cause, all we could do was speculate. By this time, it was senior year. The doctor believed that my seizures were stress induced, and prescribed me topiramate as a trial. I didn’t believe that I was under a great amount of stress, and I longed for a true answer, an answer that could make sense out this. I wanted to know how in the world I could evade this for sixteen years, and then start seizing in the middle of an average day. I started doing research and found that epilepsy can happen to anyone at any age. There is no identifiable cause and no definitive cure.

“No Seizures. No Side Effects.” – Dr. Joseph R. Sirven, The Epilepsy Awareness Foundation

While I was on spring break, Dr. J recommended that I try Topiramate to see if that would help.

“This will make you very drowsy, and it may affect your emotions,” he warned. “So, if you have any adverse reactions, I want you to call me immediately.”

I’d never been susceptible to medications that were meant to make you drowsy, but this was different. I found myself waking up later and later during the day, and when I did wake up, all I did was cry.

“I can’t,” I said, with tears running down my face. “I am so sick of crying all the time. It’s ridiculous, there is nothing wrong with me. I have no reason to cry right now.”

“Honey, you have to give it time to work,” Mama said.

“It’s been two weeks!” I took a deep breath and tried to calm down. “Maybe I can just take one pill a day instead of two, and we’ll let Dr. J know that I decreased the dose at my next appointment.”

“Okay,” she said reassuringly.

The next day, I woke up at noon, groggy and disoriented. One minute I was looking in the mirror, brushing my hair, the next, my mother was standing in front of me asking me a plethora of questions. I tried, but I couldn’t respond. I couldn’t think of how to express that I needed her to slow down. I felt the tears welling in my eyes, as she persisted.

“Come on, think, think,” I said to myself. “What is that word?” I kept opening and closing my mouth, as though it were on the tip of my tongue and just wouldn’t come out. Finally, I put my hands up in surrender, hoping that would work, and went to sit down on the bed. I placed my hands on my knees and took a few deep breaths.

“Stop,” I said, grateful the words finally came to me. “I can’t. Too much.”

She stood there, just staring at me with a furrow in her brow.

“I’ll be fine in a second. I- I just need a second,” I said in between deep breaths.

When I nodded my head and straightened my back, she continued.

“I think you should keep taking the medication as prescribed until we go see Dr. J again. Okay?”

I nodded my head in agreement.

“Approximately 50-60% of people will be seizure-free after using the first seizure medication tried.” – Dr. Joseph R. Sirven, The Epilepsy Awareness Foundation

August 24th of this year, will make the seventh year that I’ve been seizure-free. I’ve only taken Topiramate, and always the same dosage. Although research suggests that there are some who may be able to come off of their medication (with doctor’s advice) if they’ve been seizure free for two to five years, I haven’t tried. In spite of this, I have continued to educate myself, and I am committed to spreading awareness.