Living with epilepsy can be challenging and unpredictable, affecting people of all ages, backgrounds, and health histories. In her personal story, our colleague Mila Vujević shares her journey, offering an intimate look at how epilepsy entered her life unexpectedly and turned it upside down.
It happened completely unexpectedly, I was 51, so no longer young. As there are so many types of epilepsy, the onset of the disease also varies, sometimes the first seizure occurs already in infancy or childhood, sometimes in the prime of life, as was the case with me. Until then (June 2016) I had no problems with brain function, neither as a child nor as an adult. Immediately before a seizure starts, I never have an aura like some patients have (they feel something is going to happen).
With epileptic seizures, there is a malfunction in the brain. Until my first seizure, I have never been in a car accident, never had a serious fall or otherwise injured my head. I do not have any neurological disorders, “only" epilepsy.
I “woke up” in the ambulance when I began to regain consciousness. I do not remember what happened before that. I always forget everything that happens and it takes me a while to function again after a seizure. I have a type of epilepsy where I do not know what is happening to me during the seizure because I am deeply unconscious, but after the seizure I slowly come back to reality. When they ask me my name, I cannot remember it. I do not know what day it is or what 9 + 7 is (I answered 18). When I come to my senses after a while, my memory returns completely (except about the seizure itself).
“Ma'am, I'm Dr. So-and-so," said the doctor in the ambulance when he saw me regaining consciousness. “We're going to the emergency room, you've been in a car accident.” Excuse me? What happened to my car, I asked in a panic. “Don't worry, we've parked it safely.”
I already knew something about epilepsy before the seizure, because I had translated materials for healthcare professionals about epilepsy. But that was theory. I had no first-hand experience. No one in my family had epilepsy either. It is not a hereditary disease, as is often mistakenly believed.
It was only in the emergency room of the neurology department, after a series of tests, that the neurologist explained what had happened to me. “A (generalised) epileptic seizure is such a strain on the body, it's like running two marathons in a row,” he said. And anyone who knows me personally knows that I am not capable of running a marathon. So my body was not familiar with the heavy physical strain of that first seizure. And then, six months later, I had the second seizure. They cause severe spasms and pain. It takes a few hours for the body to recover and for the muscle pain to subside. Then I was put on medication and the seizures became milder, the spasms and tremors were milder and more localised and no longer affected the whole body. So, since the second seizure, I have been taking the medicine – twice every day. I never forget. For me, adherence is really not a problem. The doctrine is that neurologists can only diagnose epilepsy and start an antiepileptic drug after a second seizure. With the first seizure, the doctors only wrote 'suspected epilepsy'.
We epileptics often live with a stigma. As if it is our own fault that we got the disease. It is not! Nobody wants any disease, believe me, not even epilepsy. I asked the neurologist who admitted me to the emergency room after my first seizure if my obesity was to blame. “No, absolutely not,” he explained, “epilepsy can occur at any stage of life, in young and old people, thin and obese, men and women.”
What bothers me most about epilepsy is that I can no longer drive a car. According to the law in Slovenia, I could technically drive, because the driving ban only applies for one year after the last seizure (my last one was in December 2022). But I do not dare to. I am afraid of hurting myself or other road users. I had my first seizure while driving, but I was lucky and I survived. The neurologist who treats me told me at the beginning of my treatment that neither he as a doctor nor the drug manufacturer could guarantee that I would not have any more seizures. But they are milder now.
In all these years of living with epilepsy, I have learned to live with the disease, I have accepted it and I have changed my lifestyle because I had no other choice. I would like to say to anyone who has not experienced epilepsy first-hand that epilepsy can happen to anyone, at any time. It is nothing to be afraid of. It is just another disease that no one chooses to have. If you ever see someone having a seizure, shaking and tremoring with their legs or arms, do not be afraid – help them. Lay them on their side, put something under their head to prevent injury, and wait for the convulsions to stop. They will thank you.
