“Do you know why you shouldn’t talk to strangers?” the officer asked. My hand shot up, I knew the answer. I was so excited to talk to a police officer. But then my vision started to blur and I felt my eyes drifting back. I could hear my teacher say my name to answer the question, but I couldn’t reply…my hand remained up and that was it…I was completely absent…I couldn’t hear, speak or move.“Emily? Emily you can answer the question, put your arm down”
Their voices were faint but I could hear them. My vision came back and I looked around the room only to find everyone looking at me. A few children were smirking and my teacher was looking at me confused, and the officer smiled to let me know she was listening.
I began to cry, I was so confused and didn’t know how long I was absent for. I shook my head and my teacher took me out of the classroom. “Emily I think I need to talk to your Mum, I have noticed you go absent a few times today. Do you feel ok?” How could I explain what happened, if I didn’t know myself?
How could I explain that I wasn’t being rude, and that I couldn’t control my daydreams. “I feel…embarrassed” At that point my teacher went to speak with my Mum, who conveniently worked at my primary school. That is my earliest memory of what is called Petit mal epilepsy.
Petit Mal is an absence seizure, commonly mistaken as a daydream, ignorance or tiredness, which is why my seizures went unnoticed for a while. I have always been a bit of a daydreamer. I use to plan stories in class, get home and jot a whole story out that I had planned in a Math class. But one day, as we were crossing the main road in Belper to go for a walk, I had a seizure.
My parents were walking ahead with my younger brother, and I was walking behind them, talking to them but just walking slowly. As the lights turned from green to red, I went absent, in the middle of the road. I began to hear the horns from the cars, but that is all. 2 minutes that seizure lasted. My Mum took me to my GP a few days later, I didn’t know this but she was watching me at home to see how often I ‘daydreamed’. She calculated a total of 21 absences a day.
My doctor asked me a few questions, for example; “Do you know when you are going to go absent?” or “what does it feel like?” “When does it happen most?” She referred me straight to the hospital where I had an EEG scan. EEG stands for electroencephalogram. It is a recording of the ‘brainwaves’ – the electrical activity of the brain. The nurse told me to blow on a piece of paper, and it triggered off one of my seizures.I was petrified before my eeg, I had no idea what was going to happen, or why I was even there. I remember the lady put what looked like vaseline in my hair, onto my scalp and attached little stoppers to my head.
I was then diagnosed with Petit mal epilepsy and photosensitive epilepsy-although I have photosensitive epilepsy, lights don’t tend to trigger my fits off, they just make me feel like I am going to have a seizure. I was put on a medication called Ethosuximide which I gradually took more of, until I was on the highest dosage to suit me. I suffered from a few side effects like tiredness, weakness, headaches and sickness, but they went away after I was on a secure dosage.
After two years, at the age of 13, I came off my medication and was seizure free. I was really happy to be able to do some of the things I was not allowed to do when I had epilepsy. I no longer had fits when swimming, or running, or anything, I was delighted. A year later, my fits started up again, completely out of nowhere. We went straight to hospital because we knew we needed to get them under control. I was falling behind with school work, I was going absent all the time and I was getting so embarrassed. People laughed as I stopped still in the halls and when I didn’t answer what the teacher was asking.
This time my medication didn’t cause me any trouble and my fits stopped straight away. I was taken off Ethosuximide quite quickly-at the age of 16, my epilepsy returned quite viciously and my fits lasted longer and were more frequent. I was missing a lot of exam work and my paediatrician was worried that Ethosuximide wouldn’t be enough to control my fits as I was getting older, so they put me on Lamotrigine and Ethosuximide.
It was a lot to deal with, especially as coursework was piling up and exams were getting closer. I was violently ill, I had night shakes, sickness, stomach cramps, nightmares, I suffered from hallucinations so bad that I saw clowns and spiders coming out of my walls. It was so real that I thought I was dreaming when my Mum told me there was nothing there.
Next up: Part 2 of Emily’s Story
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Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.