Rare condition that causes excessive sleepiness

“When I joined secondary school in 2004 at the age of 15, I quickly gained reputation as the girl who slept during preps, class time and any moments of stillness. No matter how much sleep I had the previous night, my eyes would get heavy when having breakfast or buttoning my shirts.

While most people find themselves dawdling in the morning particularly after a night of inadequate rest, my experience was quite the opposite. It always felt as if I hadn’t closed my eyes for two days.

The previous year, I had sat the Kenya Certificate of Primary Education examination and that is when I noticed a change in my sleeping patterns. The change was subtle at first—a bit more fatigue during the day, an occasional longing for a nap then struggle with sleep at night.  It didn’t concern me because I had immersed myself in a marathon of movies so I thought this was the cause.

Teachers consistently singled me out and this got me into many troubles. Remarkably, even when I dozed off, I would still be aware of my surroundings; I existed in a perpetual state of half-wakefulness.

There were moments when I would be walking and suddenly doze off, causing me to collide with unsuspecting pedestrians or stumble about. At other times, it was horn blasts from moving vehicles that would jolt me from the impromptu  naps, miraculously with no harm.

In the next three years, similar and even more dramatic things continued to happen. If I fell asleep during class time, I would continue to write, but when I woke up, what I wrote while asleep was gibberish. Some of my friends took to jesting me while others avoided me fearing that I was bad influence. I felt disappointed in myself.

At home, because of many household chores, things were even worse. There was this occasion where my father walked into a smoke-filled kitchen. I had fallen asleep, with a slice of an onion at hand.

This experience, along with other scary ones, concerned my parents and they wondered how I survived at school while teachers asked if everything was okay at home.

When it became apparent that something was wrong, we decided to seek medical interventions. I was treated for iron deficiency and ear infections. The excessive sleep persisted. Further, if I stood up for long, I would feel my knees buckle beneath me.

Since I was an otherwise healthy teenager, for years, my family and doctors chalked my sleepiness to adolescence, dismissing the sleepiness as a typical phase. However, one particular doctor, in a rather blunt manner, suggested that I should stop pretending and drop out of school instead of putting my parents through the trouble. I resorted to consuming copious amounts of coffee, hoping it would serve as a lifeline to keep me alert. The doctor’s advice left me feeling frustrated as it seemed that no one could understand the struggle I was facing.

The medical community defeated, we decided that it was something mystical, perhaps even a form of witchcraft. We delved into fervent prayers and sought deliverance rituals, all in the name of finding a cure, but all in vain.

Desperation

In my desperation, I couldn’t help but tell people what I was going through, much to my mother’s dismay. Thankfully, there is one person, who turned out to be a psychiatrist, who seemed to understand what I was going through and referred me to Kenyatta National Hospital’s mental health department.

Before our appointment with the psychiatrist, we were guided through a routine counselling. I distinctly recall exchanging furtive glances with my mother during this process, both of us sharing a sense of bewilderment at how a seemingly mundane issue like excessive sleepiness had led us into a mental health clinic. The psychiatrist asked me probing questions; dozens of them. Surely, I told him, it can’t be normal to fall asleep while tying my shoelaces, cooking or during the solemn sacraments at church. I would later learn that this was an essential step in the diagnostic process aimed at eliminating the possibility of underlying medical conditions.

An EEG test, which is a medical test to measure the electrical activity of the brain and diagnose conditions such as brain disorders and epilepsy, revealed that I had a rare chronic sleeping condition called narcolepsy. He said that in his more than two decades work experience, he had encountered only two other cases. Further tests revealed that I had Narcolepsy type 1, which causes excessive daytime sleepiness, sudden muscle weakness (cataplexy) and having vivid dreams.

It was a revelation that brought immense relief. Finally, we had a name for the enigmatic condition that had plagued me for so long. And I could confidently assert to others that I wasn’t lazy. The specialist prescribed some medications, which were not only expensive but also had side effects such as a dry mouth and acidity. After a while, the medications I relied on became scarce in the market due to their limited demand. The doctor recommended a shift towards lifestyle management as a primary means of coping. This approach included educating those around me about my condition, ensuring that when I inevitably succumbed to sleep, they would be equipped with the understanding and patience needed to support me through these episodes. I started talking about it on social media and connected with a few people who knew about the condition and formed an organisation —  Narcolepsy Africa Foundation —  to create more awareness and get the necessary help.

One of the hardest experiences with the condition was during pregnancy. Whenever the baby kicked, I would have the narcoleptic triggers. Any sudden emotions—joy or sadness — would also trigger it. Thankfully, the attending nurses helped me through the process and I delivered a healthy baby, now seven years old. I have managed to live with the condition through the support of my family, friends and colleagues. At college, the teaching faculty and my classmates are aware of it as well.”

Dr Peter Muthinji, a specialist in neurophysiology and whose area of interest is sleep disorders, says:

“Narcolepsy put simply is a sleep problem in the sense that someone is excessively sleepy irrespective of sleeping sufficiently at the night and its characteristics include excessive sleepiness during the day and sudden muscle weakness.

According to data from the Centre for Narcolepsy at Stanford University, it is estimated that this condition affects approximately one in every 2,000 individuals.

Sometimes the primary cause is not known but others develop it because of problems in the brain. Hypothalamus is area in the brain that controls sleep so if there’s a tumour, it may affect someone.

Symptoms include excessive sleepiness and cataplexy. Another feature is sleeping paralysis whereby you find someone is awake mentally but unable to get out of bed.

Treatment options include drugs that stimulate the brain to stay awake, but many people opt for managing their lifestyle like taking a short nap during the day.

Notably, narcolepsy can be misdiagnosed  and confused with other conditions such as seizure. Also, not everyone who has excessive sleep during the day has narcolepsy. Some may have another disorder called sleep apnea so it’s important to get the right diagnosis.

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