Narcolepsy – How To Live With This Disorder

About Narcolepsy

Narcolepsy is a sleep disorder characterized by excessive sleepiness, sleep paralysis, hallucinations, and in some cases episodes of cataplexy, which si partial or total loss of muscle control, oftentimes triggered by a strong emotion 9such as laughter).

And yes, it occurs equally in men and women and is thought to affect roughly 1 in 2,000 people.

When The Symptoms of Narcolepsy Begin

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

What Do People Experience

People with narcolepsy experience excessive daytime sleepiness and intermittent, uncontrollable episodes of falling asleep during the daytime.

Imagine how this will look while you’re working.

These sudden sleep attacks may occur during any type of activity at any time of the day.

In atypical sleep cycle, we initially enter the early stages of sleep followed by deeper sleep stages and ultimately (after about 90 minutes) rapid eye movement (REM) sleep.

For people suffering from narcolepsy, REM sleep occurs almost immediately in the sleep cycle, as well as periodically during the waking hours.

It is in REM sleep that we can experience dreams and muscle paralysis, which explains some of the symptoms of narcolepsy.

This condition usually begins between the ages of 15 and 25, but it can become apparent at any age.

In many cases, narcolepsy is un-diagnosed and therefore, untreated.

narcolepsy symptoms

What Is The Causing Factor of Narcolepsy

Major symptoms include:

Excessive daytime sleepiness (EDS)

In general, EDS interferes with normal activities on a daily basis, whether or not a person with narcolepsy has sufficient sleep at night.

People with EDS report:

  • mental cloudiness
  • a lack of energy and concentration
  • memory lapses
  • a depressed mood
  • and/or extreme exhaustion


Cataplexy is the term given to sudden muscular weakness triggered by strong emotions such as laughter, anger and surprise.

The loss of muscle tone that occurs may range from a just-perceptible weakening of the facial muscles through weakness at the knees, to total collapse on the floor.

Speech may be slurred, and eyesight impaired (double vision, inability to focus) but hearing and awareness remain undisturbed.

In general, this symptom consists of a sudden loss of muscle tone that leads to feelings of weakness and a loss of voluntary muscle control.

Cataplexy attacks generally last less than 2 minutes, and they may only last a few seconds, though some people have repeated attacks of cataplexy which persist for up to 30 minutes.

During both mild and severe attacks, the person stays fully conscious.

Typically, cataplexy does not develop for months or even years after the first signs of excessive daytime sleepiness, but in rare cases it is the first observed symptom of narcolepsy.

Cataplexy may be most severe when the person with narcolepsy is tired rather than fully alert, and can lead to considerable anxiety.

When cataplexy is present, it is extremely rare for it to be an isolated symptom – the vast majority of those with typical cataplexy will also have symptoms of narcolepsy. 

Whilst there are a few neuro-developmental conditions in which a form of cataplexy may be seen, those conditions are exceedingly rare, and so the occurrence of cataplexy generally makes diagnosis of narcolepsy much more certain.


Usually, these delusional experiences are vivid and frequently frightening. The content is primarily visual, but any of the other senses can be involved.

These are called hypnagogic hallucinations when accompanying sleep onset and hypnopompic hallucinations when they occur during awakening.

Sleep paralysis

This symptom involves the temporary inability to move or speak while falling asleep or waking up. These episodes are generally brief, lasting a few seconds to several minutes.

After episodes end, people rapidly recover their full capacity to move and speak.

As per scientific research, there are three distinct categories:

  • A sensed presence, or intruder hallucinations, in which the person feels the presence of an evil, threatening individual
  • Incubus hallucinations, in which the person might feel someone or something pressing down uncomfortably, even painfully, on their chest or abdomen, or trying to choke them
  • Vestibular-motor hallucinations, during which the individual thinks that they are floating, flying, or moving — these may also sometimes include out of body experiences, in which a person thinks that their spirit or mind has left their body and is moving and observing events from above

How Is Narcolepsy Diagnosed

A physical exam and exhaustive medical history are essential for proper diagnosis of narcolepsy. However, none of the major symptoms is exclusive to narcolepsy.

Several specialized tests, which can be performed in a sleep disorders clinic or sleep lab, usually are required before a diagnosis can be established.

Two tests that are considered essential in confirming a diagnosis of narcolepsy are the polysomnogram (PSG) and the multiple sleep latency test (MSLT).

Narcolepsy is diagnosed by a physical exam, taking a medical history, as well as conducting sleep studies.

Testing For Narcolepsy

Tests for narcolepsy can be performed by a qualified sleep specialist.

During the appointment your doctor will ask questions about your symptoms, when, and how they developed.

The doctor will ask you about sleepiness, possible episodes of cataplexy, your nighttime sleep patterns, and other symptoms like hallucinations, dreams, and sleep paralysis.

At the same time, the doctor will rule out other causes od sleepiness and investigate other health conditions that may be causing your symptoms.

The doctor may also do a physical exam.

If your symptoms sound like narcolepsy, the next step will be to collect more information about your sleep to confirm the diagnosis.

For example:

Overnight sleep study (polysomnogram)

This is a are non-invasive,  overnight study, conducted in a hospital or sleep center in which your sleep is monitored.

While you sleep, an EEG monitors your brain waves and this information helps doctors understand what is causing your symptoms.

Measurements of body movements, eye movements, heart and breathing rates, and oxygen levels are also taken throughout the night.

Home sleep tests (those that are performed at home versus in a sleep center) are used when a doctor suspects that abnormal breathing, such as apnea, is causing sleep disturbance or daytime sleepiness.

Home sleep tests are not meant to diagnose other sleep disorders.

Multiple Sleep Latency Test (MSLT)

This is a daytime test conducted after an overnight sleep study so that your doctor can examine the quality of your nighttime sleep and the degree of sleepiness during the day.

In the MSLT, you are asked to nap at five scheduled times at 2-hour intervals beginning a couple of hours after you wake up in the morning.

How quickly you fall asleep and the type of sleep you have when you nap will be evaluated.

Falling asleep quickly and entering rapid eye movement (REM) sleep during naps is one indication of narcolepsy.

In preparation for this test, it’s important to follow your doctor’s instructions, because many factors can interfere with the results.

For example, your doctor may recommend not taking certain medications—such as antidepressants, stimulants, or other medications affecting mood.

HLA typing

Many people with narcolepsy have a particular genetic marker related to the immune system.

Testing for this genetic marker can be informative, but it is not a definitive test for narcolepsy, since some people without narcolepsy also have the marker.

Hypocretin level test

The chemical hypocretin (deficient in many cases of narcolepsy) can be measured in cerebrospinal fluid.

Talk to your doctor about whether this test is indicated.

How To Live With Narcolepsy

The major question here is: can narcolepsy be treated and cured?

Although there is no cure for narcolepsy, the most disabling symptoms of the disorder can be controlled in most people with drug treatment.

People with narcolepsy and their friends and family can work together to help manage the impacts of narcolepsy on day-to-day living.

For someone with narcolepsy, it may help to:

Develop self-awareness

Over time, most people with narcolepsy learn what aggravates their symptoms.This knowledge can help people manage their symptoms effectively.

Educate friends and family

Friends, family, and others who are educated about narcolepsy and how it affects the person they know, can react calmly and provide physical and emotional support when the need for an unplanned nap arises or an episode of cataplexy occurs.

Communicate with others

It is especially important for people with narcolepsy to be able to communicate with others and ask for support, so that when symptoms do arise, friends and family can respond with compassion and care.

Talking openly about sleepiness and cataplexy can help clear up misunderstandings before they occur.

If a friend or family member has trouble understanding narcolepsy, inviting them to a doctor’s appointment, support group, or conference focused on narcolepsy can be extremely beneficial.

Maintain social flexibility

For people with narcolepsy, it is essential that those with whom they interact are supportive and flexible with plans.

Follow medication regimens

If a person with narcolepsy has been prescribed medications to help manage his or her condition, it is important that regimens be followed closely to ensure the most success in reducing symptoms throughout the day.

Lifestyle adjustments such as avoiding caffeine, alcohol, nicotine, and heavy meals, regulating sleep schedules, scheduling daytime naps (10-15 minutes in length), and establishing a normal exercise and meal schedule may also help to reduce symptoms.

Finding support

Many people with this disorder can find it invaluable to educate themselves about this as well as learn from others and share experiences.

Websites, online forums, local support groups, and conferences are great places for people with this disorder, their partners, family, and friends to improve their understanding of narcolepsy, share tips, and find support.

narcolepsy treatment




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