The epileptic journey

KUALA LUMPUR: A lecturer from Kuala Lumpur, who only wants to be known as Christina, has been living with epilepsy for 10 years.

The 38-year-old belongs to the one per cent of the overall Malaysian population who are diagnosed with this condition.

Worldwide, approximately 50 million people suffer from epilepsy, with 80 per cent of the cases reported in developing countries, including Malaysia.

Despite the prevalence of this disease, there is still a significant lack of awareness of epilepsy among the public. Often, individuals suffering from epileptic convulsions are negatively perceived as being possessed by "otherworldly spirits". 

Christina found that people struggled to fully comprehend her situation and felt that a lack of understanding of epilepsy also invited the danger of judging and stigmatising the sufferers.

“This is why I chose to share my story so that people can be aware of epilepsy and understand that epilepsy does not define a person... it does not define me,” she told Bernama, recently.

According to GSK Pharmaceutical plc Area Medical Lead (Central Nervous System) Dr Rio Carla Pineda, epilepsy is a neurological condition where a person experiences multiple and recurrent seizures that occur in the brain.

Seizures are uncontrollable, sudden changes in the brain’s electrical activity that are commonly associated with convulsions.

 “However, not all seizures result in convulsions, with symptoms widely ranging in severity.

“With recent advances in treatment and medical understanding of the condition, patients suffering from epilepsy can lead very normal lives,” Dr Pineda, who is based in Manila, the Philippines, explained in an e-mail interview.

Living a normal life

Christina firmly believed that with the right medication, as well as counselling sessions, epilepsy patients can lead a normal life.

She herself, despite her condition, has managed to complete her master's degree and has been working as a lecturer for over 10 years.

“I learned to adapt to my condition, understanding that I have to adhere to a lifestyle I could manage," she said, adding that in addition to the medication, it was also crucial for patients to accept their condition and share the challenges they faced.

Having a proper support system and an understanding community is also important.

“When I am surrounded by positivity, I myself am positive and that makes it a little easier for me to face my challenges,” said Christina, who is still single.

How it started

Christina had her first episode of epilepsy 10 years ago when she was busy helping her parents to prepare for Christmas.

“Suddenly, without warning, I fainted. I assumed it was due to me being exhausted with all those holiday preparations. I had no idea that I just had my first epileptic seizure,” she recalled.

The second attack came a year later when she was facing elevated challenges at work.

She noticed then that the attacks coincided with the increase of her stress level.

“Unfortunately, once epilepsy is triggered, the condition cannot be reverted.

“I remember being in denial believing the attacks would not happen again, but the next one came and was worse than the last,” she said.

Medical examinations showed that Christina has a left "hippocampal sclerosis", a scarring in the brain which was the cause of her epilepsy.

After being diagnosed she was referred to a hospital which, unfortunately, did not have a neurologist to help recommend the best course of treatment for her.

She was passed from doctor to doctor and for quite some time, she found it tough getting the right help. 

The correct treatment

Her luck changed after she suffered a particularly bad attack during a training session at work. A gentleman approached her and told her that he too used to experience epileptic seizures.

He also shared with her details of a neurologist, who later become her doctor. Finally, she found herself on the right path of managing her epilepsy.

 “Not only was I referred to someone who could provide me with the adequate treatment I needed, but I recognised that I was not the only one to experience seizures and make sacrifices.

“Meeting someone who successfully faced his condition head on gave me hope that I can do it too,” quipped Christina.

The medication has helped to reduce the severity of the attacks and these days she does not faint or black out during an episode.

“I would just rest for a bit and nobody would be able to tell if I had an attack,” she said, adding that she also practised a healthier lifestyle now and did not burden herself with too much work or stress.

Understanding epilepsy

Dr Pineda, meanwhile, said several factors were known to trigger seizure episodes in a patient with epilepsy.

Among the reported common triggers are lack of sleep, alcohol intake, illicit drug use, stress, hypoglycemia (low blood sugar), fever and use of certain medications.

“For some patients, flashing lights or patterns, hormonal changes during the menstrual cycle or even a specific time of the day may trigger an attack,” she said.

Some patients may also experience a warning sign such as a feeling of ‘déjà vu’, attention impairment, smelling burnt rubber, feeling of impending doom, fear, anxiety, palpitations, ringing sound in the ear or dizziness.

Options that have been used to help control seizures comprise medication, dietary changes and surgical treatment, including device implantation.

“Prior to starting any form of treatment, the benefits versus the risks of treatment should be weighed and discussed between the doctor and patient,” she pointed out.

She said a patient with epilepsy may have a seizure anytime and although some may appear very dramatic, they are usually not medical emergencies.

“Seizures are typically self-limited, so it is best to stay calm and maintain a good presence of mind if you witness an attack,” she advised.


How to handle a seizure  

Watching someone with epilepsy having a seizure can be frightening as some patients may bite their tongue, and their face might twitch. Others might have spasms or loss of consciousness. 

Following are some guidelines on how one can help someone who is having a seizure, as shared by Dr Pineda:


• Stay calm. 

• Check if the person is in a safe place.  If not, move him or move objects that may injure him away from him.

• Note the time the seizure starts.  If the seizure lasts longer than five minutes, call an ambulance or an emergency response team.

• Cushion the person's head with something soft if he has collapsed to the ground.

• Do not hold the person down.

• Do not put anything in the person's mouth.

• Stay with the person until the seizure ends and he is fully awake. After it ends, help the person to sit in a safe place. Once he is alert and able to communicate, tell him what happened in very simple terms.

• Comfort the person and speak calmly.

• Check to see if the person is wearing a medical bracelet or has other emergency information.

• After the seizure has stopped, gently put the person into the recovery position and check that his breathing is returning to normal. Gently check his mouth to see that nothing is blocking his airways such as food or false teeth. If his breathing sounds difficult after the seizure has stopped, call for an ambulance.

• If the patient seems fully recovered after the seizure, offer to call a taxi or another person to make sure the person gets home safely. - Bernama