Sleeping disorder that almost ruined our lives

By Harriet James
Monday, November 2nd, 2020
Doctor. Photo/Courtesy
In summary
    • Periods Scientists have confirmed narcolepsy is caused by loss of brain chemical called hypocretins (orexins). These are neurotransmitters involved in the regulation of the sleep/wake cycle as well as other bodily functions such as blood pressure and metabolism.
    • of extreme sleepiness during the day that feel comparable to how someone without narcolepsy would feel after staying awake for 48-72 hours. Often resulting in difficulty concentrating and staying alert.
    • Unlike public perceptions, people with narcolepsy do not sleep all the time. Timing of sleepiness is “off” with narcolepsy so one may fight sleepiness during the day but struggle to sleep at night.

A little-known condition that causes people to fall asleep involuntarily has had devastating effects on them as Xavier Ochieng and Maryanne Njuguna explain.

Harriet James  @harriet86jim

When Xavier Ochieng was 14 years old and in Form One, he noticed that staying in class was becoming a nightmare.

He would start losing concentration and fall sleep in the middle of lessons.

At first, he thought he was homesick, but this habit continued even after he slept for eight hours as recommended. 

“It became so unbearable I had to take a two week holiday in the name of treatment, but when I got home nothing changed. I still felt sleepy despite being in my room,” he narrates. 

His parents never knew what was going on and even when he went back to school, nothing changed.

He would dose off for at least 15-20 minutes in a 45 minutes lesson and that could happen in even six lessons out of the possible 10.

His performance dropped that year since he was trying to find out what was going on with him and trying to cope with school life.

His sleepiness was also becoming the talk of school and he began losing friends, something that greatly affected his self-esteem. 

In 2017, five years after he noticed his symptoms, Xavier visited a neurologist and after tests were carried out, it was concluded he was narcoleptic.

By definition, narcolepsy is a sleep disorder characterised by extreme sleepiness, sleep paralysis, hallucinations, and in some cases episodes of cataplexy, the sudden, brief loss of voluntary muscle tone triggered by strong emotions such as laughter.

“The neurologist prescribed some stimulants, but I had to stop using after a while since they were too expensive.

I was using my upkeep money because I had not informed my parents. Each Ritalin was Sh90 per tablet,” he adds.

He was supposed to take it twice per day to manage the condition since it has no cure. 

According to Narcolepsy Foundation Organisation, the disease occurs equally in men and women and is said to affect over three million people.

The symptoms appear in childhood or adolescence, but many people have symptoms for years before getting a proper diagnosis.

“In terms of diagnosis, the disease is still new in the country. People with the disease feel sleepy during daytime and may involuntarily fall asleep during normal activities.

The normal boundary between when one is supposed to be awake and asleep is blurred, so the symptoms of sleeping can happen when an individual is awake,” explains Dr Peter Onchwati.

Varied symptoms 

Narcolepsy affects the part of the brain known as hypocretin, which is responsible for activating and maintaining actions of alerting systems that help people stay awake.

In a person with narcolepsy these cells are dead, making it hard for them to stay awake for long.

In addition, this loss can also affect other regions in the brain such as norepinephrine (a stress hormone and neurotransmitter), dopamine (the feel good neurotransmitter) and serotonin (the happy chemical); that’s why sometimes doctors prescribe antidepressants. 

“Narcolepsy symptoms vary from person to person, with some cases more severe than others.

The length of time a sleep and cataplexy attack lasts and the intensity also vary from person to person.

The symptoms and effects are unique to each patient and so is treatment,” says Maryanne Njuguna, a founding member of Narcolepsy Foundation Organisation in Kenya. 

For the 31-year-old, whose symptoms began at 15, she noticed there was change of sleep schedule as soon as she completed her Kenya Certificate of Primary Education and was waiting to join high school. 

“I used to wake up exhausted like a person who hasn’t rested the whole night.

I fell asleep taking notes in class or even playing outside for PE, during parade as we stood up I would find myself dosing.

I had issues with teachers who thought I was rude and had attitude problems,” she recalls.

As a result, students and teachers didn’t want to associate with her. It took five long years to get the correct diagnosis from Kenyatta Hospital’s Department of Mental Health.

Just like Xavier, the high price of the ailment plus the side effects such as drastic weight loss and gastrointestinal issues made Maryanne rely more on lifestyle adjustment to manage it.

“I take a lot of scheduled naps just before I head to church or meetings to help me stay alert.

When it comes to reading, I prefer auto books or select to speak feature since the concentration that comes with reading induces sleep. I also ensures that I keep fit and eat well,” explains MaryAnne

As people suffering from  a chronic condition and an invisible disability,  Maryanne and Xavier have faced stigma and ridicule for their inability to finish simple tasks on time and for struggling to wake up each morning. 

“It is always an embarrassment being caught sleeping. It results in failed relationships, especially if one has unsupportive partners/family/colleagues or friends to whom you always keep explaining why you are always sleepy or look tired.

It is exhausting. As a result, one tends to become withdrawn from the society and this alone puts us in a disposition of being depressed,” says Maryanne

Self awarenss

 Such experiences made Maryanne believe she was bewitched and it tore her apart. She had to work really hard in building her self-esteem and not focus on people’s comments. 

“I always refer to the self-awareness pyramid as a process of self-acceptance of other people living with narcolepsy because once you fortify yourself with self-knowledge and acceptance, the effects of social-stigma will not have a toll on you.

Before I got to that place, I also became withdrawn, especially from friends who did not understand my situation. I always avoided huge gatherings or meeting new people.

However, I have special friends and a best friend who knowingly and unknowingly helped me get through and find myself through it all.

They just never gave up on me and dragged me out of the house,” she adds. 

“Misdiagnosis of the disease is very common and it can take up to 15 years or more for a person to be diagnosed.

The situation is worse in Africa since there are few sleep clinic/sleep specialist or a psychiatrist and it costs a fortune to be treated by one.

In addition, the present specialists are not well conversant with the symptoms of the diesease making patients receive wrong treatment.

Most cases have gone undiagnosed as awareness of this disease is lacking. There is also no clear data on cases as the Ministry of Health is yet to recognise it among its priorities,” explains Dr Onchwati.

Psychological problems can result from the individual’s inability to cope with symptoms and family’s misunderstanding of the disorder.

Failure to accept this fact may seriously impact self-esteem and/or personal relationships. Healthcare counselling for persons with narcolepsy and their families can assist in alleviating these secondary problems. 

“The public should be educated, especially school, health and human resource personnel.

This can assist in lessening or preventing many issues, for instance, we have children being punished in school for falling asleep in class and for failure to complete assignments and poor time management. Some even drop out of school and lose hope,” says Maryanne.