afiqah's Story

The next thing I remember was waking up on the hospital bed, just to find out that I had been diagnosed with epilepsy. My mom told me that I once had a seizure when I was 10 months old. She was surprised to see a baby who was good at crawling suddenly turned into a baby who could not even lift her neck. After the attack from when I was still in kindergarten, I lost all of my childhood memories. My learning ability was declining. I was not able to recognize the letters a, b, or c, until I was in Standard 3. My exam results were always disappointing, making me the last student in class. The year 2000 was the year I had to take UPSR. The exam forced me to study extra hard. At that time, I was only good at spelling. I began to feel the “aura”, which is the term that people use to describe the warning sensation they feel before experiencing a tonic colonic seizure. An epilepsy 'aura' is in fact a focal aware seizure.

At first, I did not know the meaning of aura, because during the last episode of my attack (from when I was 6 years old), it came without an aura. Although I was often attacked by the aura, I did not record a new seizure that year. The next seizure attack appeared in 2001. It happened when the school had just opened, probably due to the change of environment as I entered a new school as a Form 1 student. This time, the attack is different. I used to face the attacks only once in every six years. This time, it would reach up to 20 attacks per week. Imagine, at that moment, not only I had to adapt with a new environment, I also had to face frequent seizure attacks.

I spent most times alone because no other kids dared to approach me. The kids would say that I am crazy, and some even said that I am hysterical. I still remember this one incident where I had a seizure attack in school and I suddenly ran out of my classroom straight to the balcony, where I almost jumped down from the third floor. Fortunately, someone was able to hug me tightly. Otherwise, my life would definitely be at a risk. Please be aware that not all seizures come in the form of muscle spasms. Sometimes, my attacks would make me run, jump, or even march. I will feel tired and sleepy after each attack. I have also experienced countless attacks in my sleep.

As I entered college life, my epilepsy was on the peak. My minimum attack was around 20 times per week. There were also times when I had just come conscious from an attack, and another attack immediately happened again. Once, as I was crossing the street after I had finished a class in college, I was attacked by epilepsy again, but this time it was without the aura. A RapidKL bus had to pull an emergency break just right behind me. I almost got hit that day. Thank God, the bus driver was aware and he managed to control the situation. The road then became crowded with people, gathering to see what happened. Some of them even thought that I wanted to commit suicide! My medicines were changed, but the attacks never stopped. My body was only compatible with Epilim, Trileptal, and Folic Acid.

Other medications would cause me to lose my balance, and the number of attacks would just keep increasing. By then, I could feel that the aura was heightened too. If in the past I would only have trouble swallowing and I would often feel scared, now there are additional symptoms such as headache, nauseas, and goosebumps. It is almost impossible to predict a seizure attack. There were also times when I was able to realise what was I doing during the attack, but I was unable to control myself. Most times, I would just fall unconscious and when I woke up, everything felt like a dejavu. By 2008, I was already so tired of failing in exams and falling behind in my studies. Hence, I decided to have surgery on a doctor's recommendation. I had been so exhausted of living with epilepsy for 20 years. EEG and MRI results found that there was a scar on my right brain known as Temporal Lobe Epilepsy.

Temporal Lobe Epilepsy (TLE) is a chronic disorder of the nervous system characterized by recurrent, unprovoked focal seizures that originated in the temporal lobe of the brain that lasts about one or two minutes. After understanding every risk, I was determined to have the surgery done. Now, I am free from seizures, but at times, I could still feel the aura. As a result of the surgery, my eyes are now half blind and I have permanently lost my sense of taste. If you ask if I regret doing the surgery, honestly, the answer is no. I do not regret it because that is the price that I had to pay to be free from seizures. Although my eyesight is poor and my sense of taste is a little disturbed, it is certainly better than a series of attacks. I am also delighted to announce that I managed to get my Diploma in just 2 years after being seizure-free. Thank God.

By Nurul Afiqah binti Mohd Shah

March 2021