Narcolepsy: Causes, Symptoms, and Treatments

Medically reviewed by
 Dr. Renske Lok

Dr. Renske Lok

Dr. Renske Lok is a postdoctoral researcher at Stanford and a board member of the SLTBR Conference. Her work focuses on circadian rhythms, light, sleep, performance & alertness.

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Narcolepsy is a rare chronic sleep disorder that disrupts the brain’s ability to regulate the sleep-wake cycle. People with narcolepsy fall asleep during the daytime, even while active. They also…

Last Updated On September 27th, 2021
Narcolepsy: Causes, Symptoms, and Treatments

Narcolepsy is a rare chronic sleep disorder that disrupts the brain’s ability to regulate the sleep-wake cycle. People with narcolepsy fall asleep during the daytime, even while active. They also experience muscle weakness and loss of control over their body (cataplexy). Narcolepsy affects 3 million people worldwide, about 1 in 2000 people.

What is Narcolepsy?

Narcolepsy alters the Rapid Eye Movement (REM) phase of the sleep-wake cycle. Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source Usually, REM sleep occurs after the first bout of non-REM (NREM) sleep, within the first 90 minutes after sleep onset. However, in people with narcolepsy, REM sleep starts after very little or no NREM sleep at all, regularly within minutes of sleep onset. REM sleep is associated with dreams, intense muscle weakness and bodily movements. People with narcolepsy easily enter a state of REM even while awake.

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Narcolepsy disrupts people’s lives and creates physiological and psychological distress. A proper understanding of the condition, its causes, symptoms and treatments will prevent avoidable complications of narcolepsy and promote well-being.

Types of Narcolepsy

There are two types of narcolepsy: Verified Source Medline Plus Online resource offered by the National Library of Medicine and part of the National Institutes of Health. View source primary narcolepsy and secondary narcolepsy. Primary narcolepsy is sporadic, having no association with an underlying condition. Primary narcolepsy has two types: Type 1 narcolepsy and Type 2 narcolepsy. Secondary narcolepsy is any narcolepsy associated with underlying conditions and is rarer than primary narcolepsy.

Type 1 Narcolepsy

Type 1 narcolepsy (previously called narcolepsy with cataplexy) includes sudden muscle weakness. Other symptoms include insomnia, excessive daytime sleepiness, and hallucinations.

Type 2 Narcolepsy

People with Type 2 narcolepsy (previously termed narcolepsy without cataplexy) experience similar symptoms as those with type 1 narcolepsy, but without cataplexy (sudden muscle weakness).

Secondary Narcolepsy

This form of narcolepsy develops in association with an underlying condition. Common conditions that can trigger secondary narcolepsy are:

  • Multiple sclerosis
  • Brain tumors
  • Encephalitis
  • Head injury

What Causes Narcolepsy? Who Is at Risk?

The root causes of narcolepsy are not fully understood. However, here are some factors associated with the condition.

Low Hypocretin Levels

Low hypocretin levels are a leading cause of narcolepsy. Hypocretin, produced by the hypothalamus – also known as orexin – is a chemical in the brain that regulates arousal. Verified Source ScienceDirect One of the largest hubs for research studies and has published over 12 million different trusted resources. View source When the level of hypocretin in the brain is low, arousal systems are hindered, resulting in sleepiness. Studies show that hypocretin levels are low in people with narcolepsy.

Brain Injury Affecting the Hypothalamus

Hypocretin is produced in the region of the brain called the hypothalamus. If the brain is injured and the hypothalamus is affected, hypocretin production will be hindered, disrupting the sleep-wake cycle.

Genetic Factors

Genes can make a person more likely to develop narcolepsy. Although most cases have no familial link, about 10% of the people Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source with Type 1 narcolepsy have close relatives with the condition. The currently identified genes cannot explain the presence of narcolepsy.

Hormonal Changes

Narcolepsy can develop when people are experiencing hormonal changes, for instance, during menopause and puberty. Hypocretin production is affected by reproductive hormones. During puberty or menopause, levels of the reproductive hormones in the blood fluctuate, suppressing hypocretin production.

Infections

Swine flu infections, other streptococcal infections like Strep Throat and Scarlet Fever, and even auto-immune diseases Verified Source ScienceDirect One of the largest hubs for research studies and has published over 12 million different trusted resources. View source can trigger an autoimmune response, damaging the hypothalamus and hindering hypocretin production.

Other factors

Other factors such as significant psychological stress and exposure to environmental toxins also play a role.

Symptoms of Narcolepsy

The symptoms of narcolepsy vary depending on the type. Some symptoms include:

Excessive Daytime Sleepiness

Excessive daytime sleepiness Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source (EDS, regularly assessed with Epworth sleepiness scale) is a characteristic narcolepsy symptom and one of the first to appear. All people with narcolepsy experience EDS. Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source It is overwhelming, uncontrollable and dangerous for people with narcolepsy. People with narcolepsy can experience EDS without any warning, and they can fall asleep even while cooking, swimming, or driving.

Cataplexy

Cataplexy Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source is a condition marked by sudden muscle weakness while awake. Sometimes, it is triggered by an outburst of joy, anger, surprise, and happiness. Signs of cataplexy include sudden buckling of the knees, dropping of the jaw, and total collapse. During these episodes of cataplexy, the people are usually awake. The episodes are short-lived, lasting for seconds or minutes (generally less than 2 minutes). The frequency of episodes varies; some people might experience it once in their life while others can have several attacks in a single day.

Sleep Paralysis

Sleep paralysis Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source makes people lose control over their bodies when going to sleep or waking up. It is marked by the inability to talk or move while trying to sleep or get up. Sleep paralysis episodes are usually short-lived, lasting several seconds up to several minutes.

Hallucinations

Vivid hallucinations are known symptoms of narcolepsy. There are two types of hallucinations: hypnagogic and hypnopompic. Hypnagogic hallucinations (also referred to as ‘waking dreams’) occur before a person falls asleep, while hypnopompic hallucinations occur as the person is waking up. These hallucinations are often vivid and frightening. The hallucinations might involve smells, tastes and sights of imaginary things.

How Is Narcolepsy Diagnosed?

Before a diagnosis of Narcolepsy is made, the doctor needs to get a history, examine the person and conduct some tests. Some diagnostic aids include:

Sleep History

Studying a person’s self-reported sleep history can help the doctor determine the severity of their symptoms. By studying a person’s sleep history, doctors can detect patterns suggestive of narcolepsy or other neurological conditions Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source

Polysomnogram

A Polysomnogram Verified Source Medline Plus Online resource offered by the National Library of Medicine and part of the National Institutes of Health. View source is one of the sleep studies used to confirm a diagnosis of narcolepsy, Verified Source Medscape Serves as a resource for doctors and other healthcare professionals, providing updates on medical breakthroughs and expert pieces. View source and is currently the gold standard in the field. During polysomnography (PSG), the person is monitored overnight and vital information like the oxygen levels, breathing, leg and eye movements, and brain waves are recorded.

A PSG also allows the doctors to monitor the onset or disturbance of REM sleep. Doing so is vital because narcolepsy is associated with earlier onset of REM sleep. PSG can also help to differentiate between narcolepsy and other neurological conditions, such as sleep apnea.

Multiple Sleep Latency Tests

The multiple sleep latency test Verified Source National Library of Medicine (NIH) World’s largest medical library, making biomedical data and information more accessible. View source (MSLT) is done the day after overnight PSG. Unlike the PSG test, the MSLT is done during the day, and is meant to assess excessive daytime sleepiness. Over two hours, you are allowed to take four to five naps. The MSLT monitors how quickly you fall asleep and how soon after sleep onset your brain enters the REM sleep state.

How Can Narcolepsy be Treated?

Narcolepsy has no cure, but people with the condition can control its symptoms with medication and lifestyle changes.

Medication

There are many medications used to treat narcolepsy. However, it’s important that you consult your doctor before taking any.

Lifestyle changes and home remedies

In addition to medication, there are some lifestyle changes and home remedies that can help. These include daily exercise, avoiding large meals and lots of liquids before bed, developing a fixed sleep routine (going to sleep and waking up at the same time every day, including weekends), and taking a short nap during the early part or middle of the day if needed.

Our sleep calculator can help you establish your ideal bedtime.

Coping Strategies

Narcolepsy can be a difficult condition to live with, but having coping strategies in place makes doing so easier.

Work

The Americans with Disabilities Act covers people with narcolepsy. Employers have to provide reasonable work provisions for employees with narcolepsy. Employers can adjust work schedules and permit short breaks during work.

Driving

People suffering from narcolepsy have a high risk for automobile accidents and other accidents. High-risk activities such as driving, swimming, and cooking should be avoided where possible. And should only be considered after talks with a doctor.

Support Groups

For people living with narcolepsy, support groups can be an invaluable resource. Local, national and even international support groups can be a helpful resource. Family support is also vital. These groups can provide encouragement and prevent you from being overwhelmed by the condition.

Frequently Asked Questions

What can narcolepsy be mistaken for?

Narcolepsy may be mistaken for depression, anxiety, insomnia, and attention deficit hyperactivity disorder (ADHD). Because narcolepsy is often misdiagnosed as a psychiatric condition or an emotional issue, people can go years without a proper diagnosis and treatment. Children with narcolepsy are at particular risk of being misdiagnosed.

While many of narcolepsy’s major symptoms can be mistaken for another condition, a physical exam and sleep study can help rule out or identify causes.

What are the signs of narcolepsy?

Symptoms of narcolepsy include excessive daytime sleepiness, sleep paralysis, and hallucinations when falling asleep or waking up. Another noted symptom is cataplexy (muscle weakness), which can be the first symptom to manifest and may be mistaken for a seizure disorder.

While narcolepsy is often characterized as a sleep attack, people with narcolepsy may find it difficult to fall asleep or stay asleep at night.

Is narcolepsy a mental illness?

While narcolepsy may be confused with mental illnesses such as anxiety and depression, it is not a psychiatric condition but a neurological disorder. As a disorder, narcolepsy may have several causes, including brain injury and autoimmune disorders. However, due to the effects that narcolepsy can have on a person’s life, a narcolepsy patient can be at risk of mental illness.

Can you suddenly get narcolepsy?

According to the National Institutes of Health, symptoms of narcolepsy often develop between age 7 and age 25. However, narcolepsy can occur later in life. For example, in rare cases narcolepsy can result from traumatic injury to the parts of the brain that control wakefulness. Such injuries can occur at any point in a person’s life.

Can you drive if you have narcolepsy?

While a person with narcolepsy isn’t legally barred from driving, it may not be advisable to do so without a treatment plan. Taking medication to manage narcolepsy can help you stay awake while driving, although it’s not 100 percent guaranteed. We recommend speaking with your doctor about the risks of driving with narcolepsy.

As a side note, many states ask drivers to report information about any pertinent medical conditions when applying for a driver’s license. A few states do require people with narcolepsy to disclose their condition.

Conclusion

Not only can narcolepsy be difficult to live with, but it can also be difficult to even obtain a correct diagnosis. Narcolepsy is often mistaken for other conditions, and some people spend years not realizing they suffer from it. Once they’re properly diagnosed, they should plan out a treatment plan and devise coping strategies with their doctor.


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