Narcolepsy With Cataplexy – Causes, Symptoms & Sleep Disorder Health

Narcolepsy With Cataplexy – Narcolepsy is one of those conditions many people have heard of but few know much about. Narcolepsy is a chronic neurological disorder that disrupts the brain’s ability to control the sleep/wake cycle. Although most people don’t know much about narcolepsy, it is more common than you might think.

About 1 in every 2,000 people in the United States have narcolepsy, but many of these 200,000 people do not know that they have it. Narcolepsy is often misdiagnosed, and it can take years for people to be diagnosed.

The main symptoms of narcolepsy are excessive daytime sleepiness (EDS), disrupted nighttime sleep, hypnogogic / hypnopompic hallucinations, sleep paralysis, and cataplexy.

There is no cure for narcolepsy, but it can be treated with a combination of medications and lifestyle changes such as regular naps and good sleep hygiene.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

Excessive Daytime Sleepiness (EDS)
Excessive Daytime Sleepiness (EDS)

People with narcolepsy (PWNs) suffer from excessive daytime sleepiness (EDS) and sudden episodes of uncontrollable drowsiness.

Sleep can overcome a person with narcolepsy at any time of day, no matter what they are doing, and sometimes with little warning.

These sleep episodes are commonly seen media representations of narcolepsy and are the symptom most people associate with the condition, yet this is only one small part of EDS.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

What Excessive Daytime Sleepiness Feels Like
What Excessive Daytime Sleepiness Feels Like

There are many other things that fall under the umbrella of excessive daytime sleepiness (EDS), such as feelings of chronic fatigue and exhaustion.

This has been compared to the tiredness felt by new mothers, or what it would feel like if someone stayed awake for 3 days straight.

Another common symptom of EDS is “brain fog”.

People with narcolepsy (PWNs) describe this as “having a cloud between you and the world” or trying to think through a fog.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

Some People With Narcolepsy Experience Micro Sleep
Some People With Narcolepsy Experience Micro Sleep

EDS is not always as obvious as someone falling asleep at their desk or starting to doze off. Sometimes people with narcolepsy may look awake but are actually unaware of what is going on around them.

This is called “microsleep”; during microsleep episodes the brain is asleep, but the person outwardly appears to be alert as their body continues to perform a task on auto-pilot, which is called “automatic behavior”.

Microsleep episodes and automatic behavior can be very problematic.

Since it is not obvious that the person is asleep they may be accused of daydreaming or not paying attention.

This is a particularly difficult issue in school or at work.

EDS and automatic behavior can also make driving difficult for people with narcolepsy (PWNs) if their symptoms are not well controlled with medication and behavioral adjustments like regular naps.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

Disrupted Nighttime Sleep
Disrupted Nighttime Sleep

Although sleepiness is the primary complaint for most people with narcolepsy, disrupted nighttime sleep is also one of the main symptoms of narcolepsy.

Vivid, highly realistic dreams are common and many people with narcolepsy (PWNs) have trouble staying asleep at night even though they have no difficulty initially falling asleep.

For people with narcolepsy, the regular stages of sleep are interrupted by frequent periods of Rapid Eye Movement (REM,) or dreaming sleep.

People who do not have sleep disorders usually take about 90 minutes to enter REM sleep, but people with narcolepsy begin dreaming less than 15 minutes after falling asleep and experience more REM sleep over the course of the night.

As a result, people with narcolepsy don’t get enough of the most important deep, restful stages of sleep. This just adds to the sleepiness experienced during the day.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

Narcolepsy With Cataplexy
Narcolepsy With Cataplexy

Cataplexy, another major symptom of narcolepsy and one that is unique to the condition, is the sudden loss of muscle tone often triggered by strong emotions such as laughter, anger, and fear.

Cataplexy occurs in about 70% of people with narcolepsy.

Narcolepsy with cataplexy is known as type 1 narcolepsy, and narcolepsy without cataplexy is called type 2 narcolepsy.

During cataplexy, muscles become limp or weak and no longer provide support (loss of muscle tone).

This can affect just a small part of the body or the whole body, and they may last from a few seconds to minutes.

People with narcolepsy commonly describe cataplexy as feeling “weak in the knees” when they laugh or being unable to hold up their head.

During cataplexy episodes, the person is fully awake and aware of what is going on around them but may be unable to respond.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

Cataplexy Can Be Confused With A Sleep Attack
Cataplexy Can Be Confused With A Sleep Attack

For those without narcolepsy, cataplexy is sometimes confused with a sleep attack. It can appear as though the person having cataplexy has suddenly fallen asleep in the middle of an activity; their eyes may be closed and because their muscles are limp they may be unable to move or respond verbally.

Being surrounded by people who are trying to help can actually make things worse!

Strong emotions such as embarrassment or frustration can prolong the cataplexy episode, making it difficult to tell helpful bystanders what is actually going on.

Supportive friends and family can help in these situations.

Some people with narcolepsy also try to learn what types of situations tend to trigger their cataplexy and try to avoid those situations or develop coping mechanisms such as repressing their emotions.

Medications are often very helpful, but many people with narcolepsy still experience some cataplexy.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

Hallucinations And Sleep Paralysis
Hypnogogic/Hypnopompic Hallucinations And Sleep Paralysis

The last two main symptoms of narcolepsy are hypnogogic/hypnopompic hallucinations and sleep paralysis.

Both of these symptoms occur on the edge of sleeping and waking.

Hypnogogic and hypnopompic hallucinations are the same thing; vivid, dreamlike images, sounds or sensations that occur while waking up or falling asleep and can seem so real that they are difficult to distinguish from reality.

Hypnogogic hallucinations occur as a person is falling asleep while hypnopompic hallucinations take place during the transition from sleep to wakefulness.

In either case, these hallucinations are often described as “waking dreams”.

The brain is partway between sleep and wakefulness, so these dreams can be extremely vivid and lifelike.

They can involve multiple senses and often feel very real even when the content of the dream is strange or unusual.

Most of the time, hallucinations occur while falling asleep at night or waking up in the morning, but they can also happen during naps.

Since these “waking dreams” can be so realistic they can also be quite scary.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

Sleep Paralysis
Sleep Paralysis

Sleep paralysis also occurs on the edge of sleep and wakefulness, and can sometimes overlap with hypnogogic/hypnopompic hallucinations.

During sleep paralysis, the person is aware, but unable to move or speak.

Like hypnogogic hallucinations, this can be frightening, especially for children.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

What Causes Narcolepsy
What Causes Narcolepsy

Narcolepsy generally develops during adolescence, although it can occur at any age.

Researchers do not fully understand what causes narcolepsy, but current science points to a combination of genetic and environmental factors that influence the immune system.

Scientists do know that type 1 narcolepsy is caused by the loss of a brain chemical called hypocretin (orexin), a neurotransmitter that helps regulate the sleep/wake cycle.

Scientists still do not fully understand what causes the destruction of hypocretin, and the cause of narcolepsy without cataplexy is not yet known.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

At What Age Do People Suffer From Narcolepsy
At What Age Do People Suffer From Narcolepsy

Since narcolepsy often develops during the teenage years, symptoms are often misunderstood as “typical teenage sleepiness”, or blamed on depression or adolescent moodiness, staying up too late, drug use, and laziness.

Many people with narcolepsy (PWNs) are misdiagnosed with conditions like depression or epilepsy and it can take years before they receive an accurate diagnosis.

In part, this is because so few people know very much about narcolepsy. This is true even for physicians.

A survey of doctors and the general public found that only 24% of primary care physicians and just 62% of sleep specialists considered themselves “very or extremely knowledgeable about narcolepsy”.

This lack of knowledge makes it difficult for people with narcolepsy to get diagnosed accurately and quickly. It also contributes to misperceptions about narcolepsy and the impact it has on the lives of people with narcolepsy.

People with narcolepsy face this lack of knowledge in their daily lives.

Many people with narcolepsy say that people around them sometimes assume that their EDS can be cured with a cup of coffee or an earlier bedtime.

In reality, even with medication and other treatments, living with narcolepsy can still be a real challenge.

Narcolepsy is an invisible disability. Even though people with narcolepsy can feel constantly exhausted and may have trouble with everyday tasks, there are no obvious signs to indicate that a person has narcolepsy.

Support from family and friends is very important, as is support from within the narcolepsy community. Narcolepsy Network support groups and their annual conference can help people with narcolepsy connect in person. Online support is available through Facebook, Twitter and other forms of social media.

Narcolepsy With Cataplexy
Excessive Daytime Sleepiness (EDS)
Narcolepsy And Micro Sleep
Hallucinations And Sleep Paralysis
Sleep Paralysis
What Causes Narcolepsy
What Age Do People Suffer From Narcolepsy

 

Melissa Patterson
Narcolepsy Network, Inc.
narcolepsynetwork.org