Cheryl, 38, Canada

At the age of 28, I started experiencing weird sensations in my throat, kind of like choking sensations, and the urge to clear my throat, every time I blow dried my hair. I didn't think anything of it. One night, I had been invited out to my best friend’s housewarming party. I had a few glasses of wine, and stayed up quite late. I probably had close to 3 hours sleep, and then decided at 9am in the morning to go home to my bed. When I went home, I changed my mind, and decided to take a shower. As I was blow-drying my hair, I started to feel that strange sensation in my throat again, only, it was really strong and persistent this time. I immediately put down my blow-dryer, and started walking backwards into my parents bedroom. My mother called out my name, and when I went to answer her, it was as if my lips were glued shut, and I couldn't say anything.

I woke up on my bed, with two ambulance attendants staring down at me, calling my name. They said to me, "Cheryl, you are ok. You just had a grand mal seizure". I started to cry. I could see both my parents, standing behind the attendants, with tears and fear in their eyes, and all I could do was cry and panic, and struggle to sit up. I was advised to lie down, and they put me in a stretcher, and I was taken to the hospital. In the emergency room, the emergency doctor spoke to me privately, and had asked me what I was doing the night before that may have led to the seizure. My blood alcohol level wasn't extremely high, but the doctor figured, that the combination of lack of sleep, and drinking wine, may have led to the demise of me having my first seizure.

I was kept for 1 week in the hospital, in order to quickly expedite the necessary tests required to diagnose me properly. I had everything done. MRI's, CT scans, and an EEG. The CT scan showed that I had what is called Periventricular Heterotopia: a rare congenital defect that occurs prior to birth in utero. My mother was asked to provide her medical history, and any issues she may have had while carrying me. I was born 1 month premature, and my mother had experienced a lot of bleeding while carrying me. The neurologist indicated that this was the contributing factor to my seizure, and after giving him a brief history, of the weeks that led up to the incident, he had concluded that those "strange sensations" were in fact simple partial seizures otherwise known as aura's, which eventually led to my first grand mal seizure.

Two weeks after my hospital stay, I was getting ready for work, and I was blow-drying my hair, and I started to feel the same sensation again. I immediately ran into my bedroom and lay down, and had another grand mal seizure. It was so strange. I was AWAKE and AWARE for the first half minute, I could hear myself making strange noises, and see the pillow next to my face where I had led down. I then slowly started to slither off of my bed, and I could feel the drool dripping from my mouth, and then the 2nd part of the seizure must have happened (clonic phase), because I woke up with the sound of the doorbell, while lying on the floor stunned and a very badly bitten tongue. My co-worker who had rang the doorbell, and had come to pick me up to carpool to work, immediately drove me to my neurologist, where I was then officially diagnosed with Temporal Lobe Epilepsy.

Then came the daunting task of finding the right medications and dosage to stop me from having these seizures. For months, I could not sleep alone, and I was plagued with the fear and anxiety of having another seizure, and what would people think of me, especially if I had another seizure in front of them?

As time went on, and no seizures occurred, I started to feel better. Ten years later, here I am. I haven't had a grand mal seizure since, and I am on 400mg of Tegretol CR and have been for the last 10 years without any plans of coming off of it. With the exception of a partial seizure every now and then, I am happy to say I've continued to live my life happily, and carry on as normal.

I do not let my Epilepsy define me. Life is good, and I still have the occasional glass of wine without incident.

- May 7th, 2015

Contact info:

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