Reflecting On My Epilepsy Diagnosis
By Ubah Hussein
In November 2010, I was officially diagnosed with epilepsy.
Growing up, there was nothing to make me think that I would have this condition. There were no signs. No warnings. The seizures just started happening all of a sudden, out of nowhere. There is no history of epilepsy in my family, so the fact that I appeared to be suffering from it was a shock for everyone in my life.
My first seizure was terrifying. Seizures are changes in the brain’s electrical activity. These changes can cause dramatic, noticeable symptoms or may not cause any symptoms. Common feelings associated with seizures include physical and mental exhaustion, confusion, and memory loss.
After my first seizure, I thought this won't happen again; maybe it’s just a one-off thing. After all, seizures do sometimes randomly occur, without much damage, and then never return. A few weeks later, I had another one and soon after that, another. It was after the third seizure that I was officially diagnosed with epilepsy.
The next step was finding the cause. I remember going through MRI scans and a few other scans to determine what the actual cause was. The doctors found nothing, which was confusing and frustrating. It was a very strange time for me.
A year later, when I was in Year 9, I was put on medication. Lamotrigine is what I was, and still am, taking. It really helped with controlling my seizures; for the next two years, I was seizure-free. Life began to feel normal again.
Eventually, it got to the point that I was allowed to reduce my medication – the nurse even said that she thought that I didn’t have to take medication at all since I was doing so well. Her words gave me hope. I thought no more hospital visits and no more seizures. It wasn’t long before my hopes were dashed. About a month later, my seizures came back. I was back on medication and have been since then. It was hard adjusting back to the medicine, but it has been worth it for my health in the long run.
Prior to 2021, I would only have a seizure sporadically, about once or twice a year. I am taking my medication seriously, and now I have been seizure-free for almost three years. My epilepsy is still something I have to think about, but nowhere near to the same extent that I had to a few years back.
Even though my seizures are well controlled now, there are still concerns I need to think about or put in place. For example, I cannot leave the door locked when taking a shower. If I plan to drive, I have to make sure I am seizure-free for a year. Living with epilepsy is something I always have to be careful about, no matter how long it has been since my last seizure.
My relationship with epilepsy is like seeing an old enemy from school you haven't seen in a while. It’s unpleasant and anxiety-inducing. But with time, I have somehow made peace with it. The way I see it is that as long as I have my medication, I will be just fine. I can still live a full, happy life, epilepsy or no epilepsy.