In October 2021, my life took an unexpected turn with my first convulsive seizure, a startling event that unfolded while immersed in a fast-paced video game. Following an EEG and a CT scan, a small amount of epileptic activity surfaced in my brain. The neurologist informed me that, were it not for the seizure, these findings wouldn’t have raised concerns. Nonetheless, precautionary measures were taken, and I was prescribed epilepsy medication.

Two months later, I sensed another seizure coming a week in advance. Despite precautions and stress avoidance, the seizure struck again while playing a fast-paced Scrabble game. It was then that I received the diagnosis of Juvenile Myoclonic Epilepsy, aligning with the minor twitches I had experienced during stressful moments over the past few years.

Despite being medicated, seizures persisted, occurring even after a dosage increase.

Stress and quick thinking were identified as triggers, prompting lifestyle adjustments and the addition of another drug, Clobazam, to my treatment plan.

Four months later, a seemingly low-stress scenario while playing Zoo Tycoon resulted in another seizure. Alone this time, the fall led to a black eye and a forehead bump the size of a ping pong ball. Emergency room nurses, wary of exposing my brain to more radiation, assessed me for a concussion using a simple light-following test. Vomiting twice in front of them, I was released with the assurance that I wasn’t concussed.

Following my standard post-seizure routine, I took only a day off work before returning to 40-hour work weeks on a laptop screen. However, persistent head pain led me to a walk-in clinic three weeks later, where I was given an immediate diagnosis of severe post-concussion syndrome. I took three weeks off work and made numerous lifestyle adjustments though strong symptoms persisted for many months, some of which I still feel today.

Additional medication adjustments ensued, resulting in nine seizure-free months. However, in July 2023, while attempting to relearn an old dance routine, another seizure struck. A decision was made to modify my medication further, with full recognition that side effects such as increased headaches and limb twitches would emerge.
Four months later, I began experiencing extreme headaches and nausea far surpassing the pain from my previous concussion. We are currently in the process of trying to identify what these headaches mean.

This journey has been one of frequent adaptation, as each seizure has brought its own set of challenges, forcing me to redefine normalcy repeatedly. It’s a continuous process of adjustment, understanding, and acceptance.

 

The Canadian Epilepsy Alliance/ Alliance Canadienne del’Epilepssie is a Canada-wide network of organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families. We achieve this through the provision of support services, information, education, and public awareness.

 

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