Narcolepsy: Causes, Symptoms, and Treatment

What is narcolepsy?

Narcolepsy is a chronic neurological disorder affecting the part of your brain that regulates sleep. As a result, you can experience excessive daytime sleepiness and a sudden loss of muscle control (called cataplexy) causing you to fall asleep during normal daytime activities such as working or studying. These episodes are often triggered by strong emotions. And while they can be brief, lasting just a few seconds, they can be frightening, embarrassing, and cause serious disruption in your life.

Ordinary daily activities such as driving, cooking, or even walking can become dangerous, and extreme daytime sleepiness can put a strain on work, school, and intimate relationships. Narcolepsy can also create memory and concentration problems, and take a toll on your self-esteem and mental health.

Narcolepsy is more common than you probably realize, affecting about 1 in 2,000 people. While there is not yet a cure, there are plenty of ways you can reduce the symptoms. A combination of lifestyle changes, self-help strategies, counseling, and medical support can help you manage the disorder, improve your alertness, and enjoy a full and active life.

The effects of narcolepsy

These include:

Physical well-being and safety. Many ordinary daily activities, such as cooking or walking, can become very dangerous if you fall asleep or lose muscle control unexpectedly.

Mental health. Narcolepsy can disrupt your life to the extent that it may lead to depression and anxiety.

Social and professional relationships. Unfortunately, some people not familiar with the disorder find sudden sleep episodes humorous. Others may assume that you are lazy, rude, or even faking the sudden sleep episodes.

Intimate relationships. Your personal relationships, especially romantic relationships, can often suffer. Extreme sleepiness may also cause low sex drive and impotence.

Memory and attention. Narcolepsy may cause you to have problems remembering things and concentrating, creating more disruption to your daily activities.

Signs and symptoms

Most people with narcolepsy experience their first symptoms between the ages of 10 and 25. They can be especially debilitating for children or young people who are also facing the challenges of school, college, or the early stages of their careers.

Two of the most common narcolepsy symptoms—excessive daytime sleepiness and cataplexy—are often connected to your emotional state. You may tend to exhibit these symptoms when you experience intense emotions, such as laughter, sadness, surprise, or frustration.

While symptoms can vary greatly from one person to another, common symptoms include:

Excessive daytime sleepiness, with or without sudden sleep episodes.

Rapid entry to REM sleep. Narcoleptics have unique sleep cycles. Whereas most people take about 90 minutes to enter the REM or dream phase of sleep, a narcoleptic may do so right after falling asleep. Therefore, you’ll experience the characteristics of REM sleep (vivid dreams and muscle paralysis) at the beginning of sleep, even if that sleep is during the day. Other symptoms may be related to your abnormal REM sleep, including hallucinations, sleep paralysis, and cataplexy.

Cataplexy (loss of muscle control). Often, narcolepsy may cause you to have sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing or crying.

Hallucinations. Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening.

Sleep paralysis. You may be unable to move or talk at the beginning or end of sleep.

[Read: Sleep Paralysis: Causes, Symptoms, and Treatment]

Microsleep is a very brief sleep episode during which you continue to function (talk, put things away, etc.) and then awaken with no memory of the activities.

Nighttime wakefulness. If you suffer from narcolepsy, you may have periods of wakefulness at night with hot flashes, elevated heart rate, or intense alertness.

Rapid entry to REM sleep. Narcoleptics have unique sleep cycles. Whereas most people take about 90 minutes to enter the REM or dream phase of sleep, a narcoleptic may do so right after falling asleep. Therefore, you’ll experience the characteristics of REM sleep (vivid dreams and muscle paralysis) at the beginning of sleep, even if that sleep is during the day.

Types of narcolepsy

You might be diagnosed with one of two major types of narcolepsy.

Type 1 narcolepsy features sudden muscle loss as a core symptom. Some studies suggest this is the more common type of narcolepsy. However, it’s possible that type 1 is simply easier to diagnose due to more obvious physical symptoms and measurable deficiencies in a brain chemical called hypocretin.

Type 2 narcolepsy doesn’t involve sudden muscle loss. However, daytime sleeplessness is still an issue with type 2 narcolepsy, and you may also experience some degree of hallucinations, insomnia, and sleep paralysis. Overall, the symptoms are less severe than those in type 1 narcolepsy. It’s possible for type 2 narcolepsy to progress to type 1, suggesting they have a common cause.

Secondary narcolepsy is the result of a traumatic brain injury, tumor, stroke, or other brain-damaging condition. If the part of the brain that regulates sleep is damaged, a person might suffer from narcolepsy as well as other neurological issues.

Causes

Researchers continue to seek out the root cause of narcolepsy. The general consensus is that your genetics, accompanied by an environmental trigger such as a virus, for example, may affect your brain chemicals and cause the disorder.

Scientists have discovered that people with narcolepsy are lacking in hypocretin (also called orexin), a chemical in the brain that activates arousal and regulates sleep. Narcoleptics also generally have fewer Hcrt cells (neurons that secrete hypocretin), inhibiting their ability to fully control alertness, which accounts for their tendency to fall asleep. Scientists are working on developing treatments to supplement hypocretin levels to reduce narcolepsy symptoms.

Diagnosis

Narcolepsy can often be either mis- or undiagnosed. People with the disorder may wait to consult a doctor because the most common (and sometimes the only) symptom is excessive daytime sleepiness, which could be indicative of many conditions. Additionally, narcolepsy symptoms are often falsely attributed to other sleep disorders or medical conditions (such as depression or epilepsy).

As the only unique symptom of narcolepsy is cataplexy (sudden loss of muscle control), diagnosis of the condition can take a long time. If you suspect you have narcolepsy, be sure to speak with your doctor about ALL of the symptoms you are experiencing.

Along with your list of symptoms, physicians and sleep specialists use the following methods to diagnose the disorder:

Nocturnal polysomnogram. This overnight test measures the electrical activity of your brain and heart, and the movement of your muscles and eyes.

Multiple sleep latency test (MSLT). This test measures how long it takes for you to fall asleep during the day.

Spinal fluid analysis. The lack of hypocretin in the cerebrospinal fluid may be a marker for narcolepsy. Examining spinal fluid is a new diagnostic test.

Treatment for narcolepsy

Although no cure yet exists for narcolepsy, a combination of treatments can help control your symptoms and enable you to enjoy many normal activities. The treatment that works best for you can vary according to your specific symptoms, but will likely include a combination of counseling, medication, and lifestyle changes.

Counseling and support groups

It’s very common for those with narcolepsy to suffer from depression. Many symptoms of narcolepsy—particularly sleep attacks and cataplexy—can cause great embarrassment and wreak havoc on your ability to live a normal life. These episodes can be frightening, and you may become depressed because of the sudden lack of control.

Fear of falling asleep or collapsing suddenly can also lead you to become reclusive and withdrawn. Reaching out to a psychologist, counselor, or support group can help you cope with the effects of the disorder.

During support group sessions, you can connect with people who also struggle with similar issues as you. This can help you feel less alone in your situation, and you might also learn useful coping strategies from fellow group members.

Reaching out may seem overwhelming at first, but being with others who face the same problems can help reduce your sense of isolation and remove any stigma you may feel. It can also be inspiring to share experiences and learn how others have coped with their symptoms.

Cognitive behavioral therapy (CBT)

CBT or “talk therapy” focuses on the connection between your thoughts, emotions, and actions. It’s used to treat various conditions, including depression and PTSD, and a variation of it may also be helpful for people with narcolepsy.

Through CBT, you can learn specific techniques to improve sleep hygiene. For example, you might learn how to better assess your level of sleepiness or practice strategies for managing sleep paralysis and hallucinations.

CBT can also help you challenge internal beliefs and manage emotions that increase certain symptoms, such as cataplexy, or related conditions like depression. Another benefit of CBT is that you can learn to be more accepting and knowledgeable of medication and its use.

Medication

Medication can be helpful in treating the major symptoms of narcolepsy: sleepiness and cataplexy. Commonly prescribed drugs are stimulants, antidepressants, and sodium oxybate.

Modafinil. This is a central nervous system stimulant. A doctor might initially prescribe modafinil for narcolepsy because the drug can make you more alert throughout the day. It does have a few drawbacks, such as reducing the effectiveness of birth control.

Other stimulants. If modafinil doesn’t work, you might be prescribed amphetamine-like drugs instead, such as dextroamphetamine and methylphenidate. These drugs can also serve as stimulants, but they have a higher risk of addiction and may have more side effects, including nervousness, insomnia, and irritability.

Sodium oxybate. You might be advised to take two doses of this liquid each night. It can improve sleep quality, thus reducing daytime sleepiness. It also reduces sudden loss of muscle control.

Antidepressants. Drugs that treat depression, such as venlafaxine, may help with narcolepsy by reducing REM sleep. In the case of antidepressants, side effects can be dangerous, including an increased risk of suicide. Even if your narcolepsy symptoms require the use of prescription medication, experts recommend combining a drug regimen with lifestyle changes and counseling.

Lifestyle changes to ease symptoms

Making healthy lifestyle changes can help you manage narcolepsy symptoms—in conjunction with counseling, support, and any recommendations from your doctor. Daytime habits—such as exercise, diet, and how you manage stress—play a large role in helping you maintain a healthy sleep-wake cycle. It’s important to follow a regular sleep schedule, a relaxing bedtime routine, and take practical steps to counter the effects of narcolepsy during the day.

Following self-help treatments can help to not only improve your daytime alertness but also reduce the symptoms of narcolepsy.

Schedule your sleep periods. Take a few brief, scheduled naps during the daytime (10-15 minutes each). Planned naps can prevent unplanned lapses into sleep, so schedule your naps for times when you typically start to feel the most fatigued. In addition, try to get a good night’s sleep during the same hours each night.

Avoid caffeine, alcohol, and nicotine. These substances interfere with sleep when you need it. Find other ways to energize yourself, such as listening to upbeat music, and healthier ways to unwind, such as deep breathing exercises.

Avoid over-the-counter drugs that cause drowsiness. Some allergy and cold medications can cause drowsiness, for example.

Involve your employers, coworkers, and friends. Alert others so they can help when needed. For example, they might motivate you to get back into an active routine following a nap or they could take over driving duties when you feel sleepy.

Use your phone to record conversations. Phone apps can be useful for recording work meetings, school lectures, and other time-sensitive events, in case you fall asleep.

Break up larger tasks into small pieces. Focus on one small thing at a time. A large project like cleaning your home might be particularly exhausting. Rather than try to tackle it all at once, work on one room or section of a room each day.

Exercise on a regular basis. Exercise can make you feel more awake during the day and stimulate sleep at night. For example, take several short walks during the day. Even occasional breaks to stretch might help energize.

Avoid activities that would be dangerous if you had a sudden sleep attack. If possible, don’t drive, climb ladders, or use dangerous machinery. Taking a nap before driving may help you manage any possible sleepiness.

Wear a medical alert bracelet or necklace. A bracelet or necklace will alert others if you suddenly fall asleep or become unable to move or speak. You can also find phone apps that serve similar functions. Certain apps can set off an alarm if you start to fall asleep in inconvenient or dangerous situations, such as when driving.

Eat a healthy diet. Aim for a diet rich in whole grains, vegetables, fruits, low fat dairy, and lean sources of protein. Eat light meals during the day and avoid heavy meals before important activities, as you might feel drowsy after consuming too many carbs.

Relax and manage emotions. Narcolepsy symptoms can be triggered by intense emotions, so you may benefit from practicing relaxation techniques such as breathing exercises, yoga, or massage.

Finding support

Narcolepsy Support Groups – Located in the U.S. (Narcolepsy Network)

International Organizations – List of organizations around the globe that provide information and support to people with narcolepsy. (Narcolepsy Network)

Narcolepsy UK – Information, support, and a helpline for narcolepsy sufferers in the UK. (Narcolepsy UK)

Last updated or reviewed on July 11, 2023

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