Narcolepsy: symptoms, causes, diagnosis and treatment

By Cristiano Antonino On Jun 4, 2023

Narcolepsy is a chronic sleep disorder characterised by overwhelming daytime sleepiness and sudden attacks of sleep

People suffering from this condition often find it difficult to stay awake for long periods of time, regardless of the circumstances.

Narcolepsy can cause severe disruptions in the daily routine.

Sometimes, it is accompanied by a sudden loss of muscle tone (cataplexy), which can be triggered by a strong emotion: in this case we speak of narcolepsy type 1.

Narcolepsy that occurs without cataplexy is known as narcolepsy type 2.

Narcolepsy is a chronic condition for which there is no definitive cure.

However, medication and lifestyle changes can help manage the symptoms.

Support from others – family members, friends, employers, teachers – can also help to cope with narcolepsy.

Narcolepsy

Narcolepsy is a disorder characterised by chronic excessive daytime sleepiness, which can occur at any time, while driving, eating, reading, or at work.

Sleep episodes can vary in duration and frequency, but generally last only a few minutes and can occur many times during the day.

Affected individuals are unable to counteract this urge to sleep: however, when they wake up they feel refreshed and rested, and this state of well-being lasts for at least two to three hours.

The normal process of falling asleep begins with a phase called ‘non-rapid eye movement sleep’ (NREM).

During this phase, brain waves slow down considerably. After about an hour of NREM sleep, brain activity changes and REM sleep begins.

Most dreams occur during REM sleep. In narcolepsy, however, one might suddenly enter REM sleep without first experiencing NREM sleep, either at night or during the day.

Some of the features of narcolepsy – such as cataplexy, sleep paralysis and hallucinations – are similar to the changes that occur in REM sleep, but occur during wakefulness or drowsiness.

Narcolepsy symptoms

The signs and symptoms of narcolepsy can worsen for the first few years and then continue throughout life.

The most common is excessive daytime sleepiness: people with narcolepsy fall asleep without warning, anywhere and at any time.

For example, while they are working or talking with friends they may suddenly fall asleep, sleeping from a few minutes up to half an hour. When they wake up, they feel rested, but then fall asleep again.

They may also experience a decrease in alertness and concentration during the day.

Excessive daytime sleepiness is usually the first symptom to appear and is often the most annoying, making concentration and full function difficult.

Another common symptom is the sudden loss of muscle tone: this condition, called cataplexy (KAT-uh-plek-see), can cause a range of physical changes, from slurred speech to weakness of most muscles, and usually lasts only a few minutes.

Cataplexy is uncontrollable and is triggered by intense emotions, usually positive ones such as laughter or excitement, but sometimes by fear, surprise or anger.

For example, when the subject laughs, the head may droop uncontrollably or the knees may bend suddenly.

Some people with narcolepsy experience only one or two episodes of cataplexy per year, while others have several episodes daily. Not everyone with narcolepsy experiences cataplexy.

Other symptoms

The disease can also manifest itself with

sleep paralysis: people with narcolepsy often experience a temporary inability to move or speak while falling asleep or waking up. These episodes are usually brief, lasting a few seconds or minutes, but can be frightening. This sleep paralysis mimics the type of temporary paralysis that normally occurs during a period of sleep called REM (Rapid Eye Movement) sleep. However, not everyone who suffers from sleep paralysis has narcolepsy;
changes in REM sleep: people with narcolepsy often switch rapidly to REM sleep, usually within 15 minutes of falling asleep;
hallucinations: these hallucinations are called hypnagogic hallucinations if they occur while one is falling asleep and hypnopompic hallucinations if they occur upon waking. An example is feeling as if there were a stranger in your bedroom. These hallucinations can be particularly vivid and frightening.

People with narcolepsy may have other sleep disorders, such as obstructive sleep apnoea, a condition in which breathing stops during the night, restless legs syndrome and even insomnia.

Some people with narcolepsy experience automatic behaviour during brief episodes of narcolepsy.

For example, they may fall asleep while performing an activity they normally do, such as writing, typing or driving, and continue to perform that activity while they sleep.

When they wake up, they cannot remember what they did and probably did not do it well.

Narcolepsy causes

Even today, it is not known for sure what triggers narcolepsy.

However, it has been seen that people with narcolepsy type 1 have low levels of the chemical hypocretin (hi-poe-KREE-tin), an important neuropeptide that helps regulate wakefulness and REM sleep, probably due to an autoimmune reaction.

In addition, genetics is also likely to play a role in the development of the problem.

However, the risk of a parent transmitting this disorder to a child is very low, at around 1%.

Research also indicates a possible association with exposure to the swine flu virus (H1N1 influenza).

Risk factors

There are only a few known risk factors for this problem, including:

age: narcolepsy typically begins in people between the ages of 10 and 30;
family history: the risk of narcolepsy is 20 to 40 times higher in those who have a family member suffering from narcolepsy.

Complications

Narcolepsy can cause serious professional and personal problems: others may consider the person lazy, listless or lethargic.

But the complications do not end there.

School or work performance may be affected, as well as mood and emotional state.

In addition, sleep attacks can cause physical harm, as the risk of accidents, cuts, falls, traumatism and burns is increased.

Finally, it should be known that people with narcolepsy are more likely to be overweight.

Treatments for narcolepsy

There is no specific cure that can resolve this condition, however certain medications and lifestyle modifications can help manage the symptoms.

In reality, if it does not affect a person’s quality of life and presents in a mild form, it may not even require treatment.

Conversely, if it is more severe and impactful, the doctor may prescribe pharmacological treatment.

There are several drugs that can be used, such as central nervous system stimulants that help people with narcolepsy stay awake during the day.

As mentioned, lifestyle modifications are also important in managing the symptoms of narcolepsy.

In particular, it is helpful to

go to bed and wake up at the same time every day, including weekends;
planning short naps at regular intervals during the day. Naps of 20 minutes at strategic times during the day can reduce the need for sleep. Some people may need longer naps;
avoid nicotine and alcohol. The use of these substances, especially at night, can worsen signs and symptoms.
Exercise regularly: moderate and regular exercise at least four or five hours before going to bed can help a person sleep better at night and feel more alert during the day.

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