Epilepsy was something I didn't even know existed until in early 2000 I was diagnosed with it. There were no warning signs before hand and no family history of it amongst my immediate family.
When I was diagnosed I was 15. My first grand mal seizure happened at Pine Ridge High School in the auditorium during the F-CAT, Florida Comprehensive Assessment Test. I only remember being called into the auditorium to take the test, I was tired, and had a headache. Within moments of starting my test my arms had "shakes". I was still conscious and had no idea why I couldn't hold my arms steady or make them stop. Later I would find out "shakes" are referred to as tremors, small or partial seizures. Whenever they happened I would immediately feel embarrassed, ashamed, and frustrated. Why couldn't I control my body? And why is this happening now when I'm taking an exam in a room filled with my peers and friends? But I tried to continue taking my test. I politely asked the girl in front of me to pass back my pencil. However, this went on for quite sometime before I finally got so frustrated that I gave up. I laid my head on the desk and I passed out.
The girl in front of me I knew from German class. She was very smart and nice but we hung out in different cliques. Anyway, when I came back to school she informed me that it was her who got the administrator's attention when I started seizing. Apparently when I started convulsing I hit her in the back of the head, she was going to retaliate, but stopped when she saw that I was having a seizure. She ran and got the teachers.
I remember opening my eyes, my test gone, and five or so adults screaming questions at me. They all were simple questions "what's your mom's name?", "where does your mom work?", "what's your home phone number?". But I had temporary amnesia. I remembered going to take the test and I thought I fell asleep, was I in trouble for sleeping during the test? Then I remember scanning the room and all my peers and friends were moved to the upper left hand side of the auditorium, the adults barking questions at me and I were in the lower right section. What happened? Still their questions continued but they were talking fast, too fast, and shouting. What did I do? I began repeating their questions "what's my mother's name? I don't know". A teacher repeated as if it was the most outrageous thing he had ever heard, "You don't know your mother's name?" Then I realized it was outrageous. I closed my eyes and their questions stopped. Suddenly I remembered and her name flowed out, "Terri. My mother's name is Terri and she works at Wal-Mart". Slowly I came out of the fog and answered their questions.
Just as I finished their questions paramedics came in rolling a Gurnee. I was helped onto it, strapped down, and wheeled out of the auditorium to the front of the school where an ambulance was waiting. I was so embarrassed and still had no idea why I was being picked up by an ambulance. The paramedic riding in the back with me finally said, "You don't know what happened do you?" I shook my head no and she said, "You just had a grand mal seizure so we're taking you to the hospital. We called your parents and they are on their way to meet us there." I repeated what she said in my mind, "I just had a grand mal seizure? Me?!" My head started to hurt and I wanted to turn back time "Will my parents be upset at me? Will I still have friends at school? Does this make me a freak?"
Then the paramedic asked, "Do you want us to turn on the siren?" The first thought that popped in my head was, "Do it and I'll punch you." However, she was being nice. I guess some kids dream about being in an ambulance with the siren blaring, but at this point my headache was intense. I definitely didn't want to antagonize my headache with loud, obnoxious noise. "No, thank you," I replied. I closed my eyes and before I knew it we were at the hospital where my parents and older brother were waiting for our arrival.
Since that fateful day I had an EEG done, where they put wires in some type of glue and attach them to my skull. I had to be sleep deprived for it so naturally I was exhausted. I fell right asleep as soon as they said I could lie down and sleep. On the opposite wall was a window where the doctor and my mom observed me while the doctor received information from the EEG. I think I also had an MRI done to confirm the diagnosis: epilepsy.
The first anti convulsant medicine the doctor prescribed to me was Dilantin. However, we failed to read the warning label that said it was sun sensitive so when I went to Gemini Springs with my friends to roller blade and play frisbee one afternoon I broke out in hives. They covered me from my feet to my neck. I was at church with my family the next day when my mom noticed me scratching my body. I slowly lifted my shirt and revealed hives, tiny red bumps, all over my abdomen. My mom then decided to take me to the ER.
Shortly after I was put on Depakote. I hated this drug. It made me sleep all day and when I wasn't sleeping, I was eating. So I was overweight and constantly tired. I remember failing my Creative Writing class because it was the first class of the day. My mom would wake up my brother and I for seminary, a bible class, before school but I was too difficult to wake up and she worried about me not getting enough sleep so she took us out of Seminary.
After high school the doctors wanted to see if I still had Epilepsy so they weened me off. Of course, I was still epileptic but I told my neurologist no more Depakote so I was put on Neurontin and it worked... At first. My body soon built up a tolerance for it so I had another seizure. Then I was introduced to my life saving drug: Keppra. I took it with Dilantin, only this time I remembered to always use sunscreen when I went outside.
Throughout the years I found my triggers to be stress, not taking my meds, sleep deprivation, and strobe lights. I do have auras, where I feel a seizure coming on. One time I had to have my mom pick me up from a concert and another time I called her at work, while I was home alone with my toddler, Kevin.
After each seizure I had temporary amnesia where I didn't know who I was, what was going on, or what these people were saying. Many seizures since were because I didn't have insurance and couldn't afford the medication; and when I was pregnant with Kevin I had a partial seizure. I was still taking Keppra and Dilantin and I was 38 weeks pregnant watching TV in a recliner with my family. I suddenly felt my legs shake and we hurried to the ER. My Keppra levels were low and Dilantin was incredibly low. (My Neurologist now said that's because Dilantin sticks to the protein of the food you eat and when you're pregnant your diet changes). Anyway, I had a healthy baby boy. He was two weeks early but 8 pounds and 12 ounces. I was considered high risk due to epilepsy and I was monitored because he could've been born with short fingernails, a cleft pallet, spinal bifida, heart problems, or mentally retarded; but I'm happy to say Kevin was born perfectly healthy. Now he's a thriving, intelligent, and active 9 year old. He is my miracle baby.
However, for a short while I was put on a baby safe medicine, Lamictal, and was constantly having partial seizures, usually in the hands. Then one November I had a grand mal seizure at work. I felt it coming on and was going to call my husband, but that's the last thing I remember. Then I woke up on the floor with my supervisor standing over me... Embarrassing. My husband was waiting outside for me so they didn't feel it was necessary to call 911.
My last seizure was at the apartment I shared with Jim and Kevin. I had just lost Medicaid and was in the process of reapplying when it happened. I could hear Kevin playing his Leap Frog in the living room, our bedroom door was left open, I was texting Jim at work when the tremors started. I kept throwing and dropping the phone. I felt the intensity kick up and they were getting more frequent so I called my mom at work. I don't remember much. She said she heard the phone fall and then she tried calling out to me and when I didn't respond she hung up and called 911.
It's definitely not an easy disorder to live with nor is it any fun. A lot of times I only got auras for the big seizures, not the little ones. And it's human nature to be in denial and want to have control over your body and your movements, but no matter the positive thinking or wishing it away the tremors always continued. Once I was getting ready for school and I was so angry and frustrated at my arms for not doing what I wanted them to that I held onto the bathroom counter and stared hard into my eyes reflected in the mirror, telling myself to stop it. The next thing I knew I was being flung away from the bathroom counter and toward the ground, landing hard on the bathroom tile and hitting my head on the scale.
Since my last seizure in 2008 I have only been on Keppra. I've had no more seizures, knock on wood, but I still have "ticks". When I'm extremely tired and trying to read my jaw has spasms which make it sound like I'm stuttering. This is a very annoying side effect. Not long after having my second son that I was so sleep deprived that my limbs started jerking as I tried to sleep. However, I didn't lose consciousness nor had temporary amnesia during this episode. So like I stated above it's not an easy disease to live with. I have to remember to take my medicine twice a day for the rest of my life and try to get a full nights rest to keep these "ticks" at bay.
However, I am grateful for modern medicine, the scientists and doctors who have made and improved anti convulsants, and those who have helped me when I was having a seizure. If it were not for modem medicine I more than likely would not be alive today and I wouldn't have met my two handsome miracles.
So to my friends, family, and everyone reading this thank you for taking the time to familiarize yourself with epilepsy. It can be a very dangerous and life threatening disorder if not controlled by medication, which luckily mine are. As the month of November continues I'll continue to fill you in about what it's like to live with epilepsy, how it has affected my life, and some myths I have heard. So as always don't judge what you don't understand. I guarantee you that a person convulsing is just as scared as you are so please show them compassion and be patient as they come out of their haze. Thank you.