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I struggled to identify my first seizure, as I went for two years without mentioning it, not realising it was unusual. Over time, I noticed loss of time and brief moments of unconsciousness. It was only after seeing a YouTube video about a child experiencing an aura before a seizure that I recognised my symptoms matched.
During a seizure, I often lose awareness of events. For example, I had a seizure at school and do not remember walking to the student reception, despite being conscious. Seizures generally last between three to five minutes, but recovery can vary from 30 seconds to eight minutes.
Sometimes, I confuse the feeling of an aura with nerves. For instance, before a significant exam, I mistook my anxiety for an aura and ended up in a state of distress. This confusion has led to misunderstandings, including needing to explain to school why my performance might have been affected.
There are many misconceptions about epilepsy, such as the stereotype that seizures involve dramatic body shaking or are triggered by flashing lights. For me, seizures are managed by staying calm, ensuring nothing is in my mouth if I am eating, and resting after the event.
I am currently on 600 milligrams of carbamazepine daily, which has significantly reduced my seizures. Initially, the dosage was adjusted from 200 to 800 milligrams, causing dizziness, before settling at 600 milligrams. Missing a dose can lead to discomfort and dry skin, but overall, the medication has been effective.
Having epilepsy has impacted my life in various ways, from affecting my ability to drive to influencing my interactions with others. However, it has also provided opportunities, such as educating others about epilepsy through presentations. I aim to reduce my medication in the future and see if the seizures persist.
My primary goal is to potentially reduce or eliminate my medication, depending on future evaluations by neurologists. I hope that as I grow older, my condition might change or improve. Achieving this would mean fewer restrictions and greater freedom.
My life with epilepsy has been transformative, requiring early disclosure to new people and making adjustments to various aspects of daily life. Despite challenges, I strive to demonstrate that I am more than my condition and am working towards normalcy, currently being nearly 15 months seizure-free.
