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4 signs that you may be experiencing narcolepsy

How common is narcolepsy and what's life really like for people living with it?

Written by
Michael Vane
Medically reviewed by
Dr Matthew Vickers
Last updated
August 3, 2023
min read
4 signs that you may be experiencing narcolepsy
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There's a good chance you've already heard of narcolepsy.

Hell, the classic trope of the "lazy bloke" falling asleep on the job a la Homer Simpson has been a fixture amongst TV writing rooms for decades.

Indeed, narcolepsy is no stranger to the world of comedy, although it’s unlikely that anyone who suffers through the disorder finds it amusing.

It is, in fact, a serious condition that can be life-threatening if left untreated. It’s also uncommon, and often mistaken for other issues.

Here’s what you need to know about narcolepsy:

What exactly is narcolepsy?

Narcolepsy is a lifelong disorder that affects the nervous system, and the part of your brain that regulates the sleep and awake states. It can lead to bouts of REM sleep (the dreaming sleep stage) during the day and with little warning.

While falling asleep is a struggle for some, we can all agree that there’s nothing convenient about dropping into a deep dreaming sleep while eating, working or even driving.

Clinical Director of Queensland’s House Call Doctor service Dr. Ryan Harvey warns that narcolepsy is not deadly in itself, but, if left untreated, it can have life-threatening consequences for the sufferer and those close by.

“People who suffer from narcolepsy can have a severely impacted quality of life,” he says. “They have a significantly increased risk of death or serious injury as a result of motor vehicle and workplace-related accidents.”

It’s estimated that 30-50 per cent of people with narcolepsy have experienced accidents or near-misses while cooking, smoking, driving, operating machinery, and crossing the street.

Narcolepsy can be both a debilitating and dangerous disorder

The Brain Foundation says symptoms can occur suddenly or develop over the years, and these are the four key signs that someone is experiencing narcolepsy:

One: Everyone with narcolepsy experiences excessive drowsiness and a lack of energy.

This has nothing to do with ordinary night sleep. With narcolepsy, you can get the right amount of sleep each night and still need frequent naps which typically involve immediately falling into the REM sleep stage.

Two: Another symptom is cataplexy. That’s the condition where strong emotional reactions can cause sudden and uncontrollable muscle weakness or paralysis.

Laughter, anger, or fear can lead to a total collapse of the body or just weakness in the knees, neck or face muscles—all while still conscious. Each occurrence can last from a few seconds to several minutes, and someone suffering cataplexy may immediately fall into REM sleep afterwards.

Three: Then there’s sleep paralysis. During REM sleep, your body naturally becomes paralysed. It’s believed this occurs so that you don’t act out your dreams.

The problem is that some people wake during REM sleep and discover that they can’t speak, can’t move and feel as though someone or something is placing pressure on their chest.

Sleep paralysis can be panic-inducing—like something out of a bad horror movie. Thankfully, it lasts no longer than a few minutes and is not dangerous.

Sleep paralysis is most common in people with narcolepsy, but it can happen to anyone. It’s estimated around 15 per cent of the population experience sleep paralysis at least once in their lives.

Four: “Hypnagogic” refers to the transition from wake to sleep, and some people experience hypnagogic hallucinations.

The hallucinations can be audible or visual and are considered early effects of the oncoming REM sleep. To the sufferer, their dreams can feel like a reality.

The symptoms vary widely among those with the disorder, but the bottom line is narcolepsy can significantly affect a person’s quality of life.

Who experiences narcolepsy?

Narcolepsy is rare. Around one in every 2,000 people are diagnosed with the disorder. The symptoms usually begin between the ages of ten and 30 years, although they can occur at any age.

It’s often not recognised right away as symptoms can be gradual, and it can be years before a person consults a GP regarding sleep issues. When it’s a child experiencing drowsiness and cataplexy, the symptoms can be mistaken for seizure activity.

In some unfortunate instances, friends, family or co-workers can mistake laziness for narcolepsy.

What causes narcolepsy?

There are still many unknowns when it comes to narcolepsy and sleep disorders in general.

However, it’s believed that people with narcolepsy have a shortage of an important protein called hypocretin that regulates arousal, wakefulness, and appetite.

“Theories suggest a deficiency in a brain protein called hypocretin or as a result of a person’s overactive immune system mounting an attack against the body’s own brain cells,” says Dr. Harvey

“Another likely factor is a genetic brain abnormality that’s usually inherited.”

Healthline also suggests external factors like stress, exposure to chemicals and severe infections as possible causes.

So what are the treatments for narcolepsy?

There’s currently no cure or prevention for narcolepsy. The good news is that the symptoms can be controlled through therapy to manage emotions along with medication. Stimulants can improve the daytime drowsiness, and antidepressants can help with the cataplexy and REM symptoms.

Dr Harvey says: “Appropriately managed, most people with narcolepsy can lead a near-normal lifestyle.”

The sufferer will likely need to make some lifestyle adjustments such as scheduling daytime naps, avoiding over-stimulating activities, and avoiding situations where accidents can occur—driving, swimming, smoking, and certain types of work among others.

How is narcolepsy diagnosed?

If you are experiencing sleep issues, then consulting a GP is the ideal place to start. A GP can directly refer you for a sleep study which can be used to determine the cause of the issues.

Dr. Harvey says: “The sleep study, [also] called “polysomnography,” monitors brain waves, eye movements, muscle activity, and vital signs while you sleep.”

Polysomnography does require a night spent in a medical facility, and the test can also be used to detect sleep apnoea.

Even if you are not experiencing narcolepsy, the sleep study may still be required, as Dr. Harvey says this procedure is used to exclude possibilities as well as to diagnose them.

Narcolepsy is a serious disorder, and cataplexy shouldn’t be ignored. It is rare, and the symptoms can be managed with some relatively simple measures and self-awareness.

If you often feel tired or fatigued throughout the day without the need for sleep, then it’s probably not narcolepsy, but could potentially be another sleep disorder. So have a chat with a GP, even if it’s only for peace of mind.‌‌‌‌

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