Joyce Waithera: I found out I had epilepsy, and it all started with a headache

Joyce Waithera a resident of Mathagauta village, Nakuru county, was diagnosed with Epilepsy. [Rodgers Otiso, Standard]

For Joyce Waithera, 21, a resident of Mathagauta village, Nakuru County, life was 'just pretty' until Class Five when she first felt a headache.

"I thought it was just a normal headache. My parents didn't pay much attention to it either since they also thought the same," Joyce says.

However, when the feeling changed to a sharp pain a week later, her mother took her to a nearby dispensary where the attending medic prescribed painkillers "without even testing" for what was ailing her.

Joyce says she took the prescribed drugs for some days with no progress or recovery from the painful headache.

Later on, another physician advised her mother to take Joyce to a specialist. They went to a referral hospital in Nakuru where she went through an electroencephalogram (EEG) test which measures electrical activity in the brain.

According to the attending specialist, the test results showed she had epilepsy and she was immediately put on treatment.

"The specialist told my parents that I should take the drugs without fail. If I didn't, I would be 'abnormal.' To date, that is all I know because I was still young and my mother did not know much about the condition," Joyce says.

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The National Centre for Chronic Disease Prevention and Health Promotion (NCCDPHP) defines epilepsy, also known as seizure disorder, as a common brain condition that causes repeated seizures.

According to Symon Kariuki, a neurologist at Kemri-Wellness Trust, about 50 million people in the world are affected by epilepsy and about 2 million Kenyans are living with it.

He says that anything that damages the brain can cause epilepsy but the main ones, especially in Africa, are birth injuries, head injuries, and neuro-infectious diseases for example Cerebral Malaria. These causes explain about 30 per cent of all epileptics in Africa.

He says that genetics play a role in causing epilepsy but that doesn't necessarily imply heritability as some families have only one person with epilepsy. Also, viral infections are becoming significant causes if they involve the brain, for example, HIV and SARS-COV-2.

"Depending on the area of the brain affected, some manifestations are observable as convulsions and others are subtle and not convulsive, including falling suddenly for no apparent reason, jerking movements of the arms and legs, someone appearing confused, eye blinking, physiological symptoms such as fear, anxiety and other manifestations coming from the temporal lobe of the brain that's epigastric (upper middle abdomen) sensations and hearing or seeing things that others cannot verify," Dr Kariuki explains.

As to why epilepsy sometimes manifests with a headache, Nicholas Otieno from the Kenya Association for the Welfare of People with Epilepsy (KAWE) says epilepsy is an activity that happens within a brain context and the fact that it starts from there means it can cause sudden seizures due to an uncontrolled burst of electrical activity in the brain, so headaches are actually seizure symptoms caused by the onset of epilepsy.

It has been more than 10 years since Joyce was diagnosed with epilepsy. She says that living with the condition has been quite challenging.

"Here in Mathagauta, we depend on farming to make ends meet. Reality hits me hard when I cannot do heavy jobs. My arm and leg joints can become weak and result in my arm twitching at any time or I lose consciousness. This absolutely lowers my productive life. Keep in mind I don't live with my parents. I got married one year ago and therefore I should be depending on my parents," she says.

Joyce says the government and concerned stakeholders should spread awareness about this brain condition because most people do not know much about it.

"Even now as an adult, I have not fully understood epilepsy. Many just know it as an 'abnormal' condition. More research should also be done on the allegations that epilepsy drugs can cause infertility among women. I'm one year into marriage and I'm yet to get pregnant. However, I have not visited a physician with my spouse for checkups," she says.

Dr Nicholas Odero, a paediatric neurologist at Nyamira County Referral Hospital says he advocates for making epilepsy drugs available and urges patients to adhere to treatment.

"Epilepsy can be controlled but not absolutely cured. However, for a few patients, surgery may be the closest thing to a cure," Dr Kariuki says.