Key takeaways
- Narcolepsy is a long-term neurological condition that disrupts the nervous system, leading to abnormal sleep patterns and affecting a person’s quality of life.
- The condition is characterized by excessive daytime sleepiness, sudden sleep attacks, and, in some cases, cataplexy, which is a temporary loss of muscle control.
- While there is no cure for narcolepsy, treatments, including medications and lifestyle adjustments, are available to help manage symptoms and improve daily functioning.
Narcolepsy is a chronic neurological condition affecting the nervous system. It causes abnormal sleep that can affect a person’s quality of life.
Narcolepsy is a rare condition. Experts estimate it affects about 1 in 2,000 people.
The symptoms of narcolepsy usually begin between the ages of
Narcolepsy causes significant daytime drowsiness and “sleep attacks,” which are an overwhelming urge to fall asleep. It also causes insufficient, fragmented sleep at bedtime.
In many cases, it can cause unexpected and temporary loss of muscle control, known as cataplexy. This can be mistaken for seizure activity, especially in children. When cataplexy is present, it is called narcolepsy type 1. When cataplexy is absent, it’s called narcolepsy type 2.
Narcolepsy isn’t a deadly disease by itself, but episodes can lead to accidents, injuries, or life threatening situations.
Additionally, people with narcolepsy may have difficulty maintaining jobs, doing well in school, and have problems maintaining relationships due to episodes of excessive daytime sleepiness.
Treatments are available to help manage the condition.
There are two types of narcolepsy:
- Type 1 is the most common. It includes a symptom called cataplexy, or sudden loss of muscle control. People with this type of narcolepsy have episodes of extreme sleepiness and cataplexy during the daytime due to low hypocretin levels. Hypocretin, also known as orexin, is a type of brain protein.
- Type 2 is narcolepsy without cataplexy. Usually, people with type 2 narcolepsy have expected hypocretin levels.
How often and how intensely narcolepsy symptoms occur can vary. Below are common symptoms.
Significant daytime sleepiness
Almost everyone with narcolepsy has excessive daytime sleepiness (EDS), in which you suddenly experience an overwhelming urge to sleep. EDS makes it difficult to function properly during the day.
Cataplexy
Cataplexy is a sudden, temporary loss of muscle control. It can range from drooping eyelids (referred to as partial cataplexy) to total body collapse.
Laughing and intense emotions, such as excitement and fear, can trigger cataplexy. How often it occurs varies from person to person. It can happen several times a day to once a year.
Sometimes cataplexy may occur later in the disease, or it may go undetected due to medications that suppress it, such as certain antidepressants.
Poorly regulated rapid eye movement (REM) sleep
REM sleep is a sleep stage during which you have vivid dreams. You do not have muscle control during REM sleep, and it usually starts about
For people with narcolepsy, REM sleep can happen at any time of day, and often happens around 15 minutes after they fall asleep.
Sleep paralysis
Sleep paralysis is an inability to move or speak while falling asleep, sleeping, or waking. Episodes typically last only a few seconds or minutes.
Sleep paralysis mimics the paralysis seen during REM sleep. It doesn’t affect eye movements or breathing, though.
Hallucinations when falling asleep
People with narcolepsy may frequently have vivid dreams that may occur when falling asleep or waking up.
Fragmented sleep
Although people with narcolepsy are excessively sleepy during the daytime, they may have difficulty falling asleep or staying asleep at night.
Automatic behaviors
After falling asleep during an activity like eating or driving, a person with narcolepsy may continue doing that activity for a few seconds or minutes without consciously realizing they’re doing it.
Narcolepsy can also be associated with other sleep conditions, such as:
The exact cause of narcolepsy is unknown. However, most people with type 1 (narcolepsy with cataplexy) have a decreased amount of a brain protein called hypocretin. One of the functions of hypocretin is to regulate your sleep-wake cycles.
Scientists believe many factors may cause low hypocretin levels, including an inherited altered gene. This, along with an immune system that attacks healthy cells (i.e an autoimmune condition), may contribute to narcolepsy.
Other factors, such as stress, brain trauma, exposure to toxins, and infection, may also play a role.
Risk factors
Some of the risk factors for narcolepsy may include the following:
- Family history: If you have a first-degree family member (like a parent or sibling) with narcolepsy, you could be 40 times more likely to have the condition. But the percentage of cases that run in families is small.
- Age: There are two peak periods of diagnosis for narcolepsy. One is around age 15 and the other around age 36. However, narcolepsy is commonly underdiagnosed or misdiagnosed.
- Previous brain trauma. In rare instances, narcolepsy can occur after severe trauma to areas of the brain that regulate wakefulness and REM sleep. Brain tumors may also cause narcolepsy.
The complications associated with narcolepsy include:
- If you have narcolepsy, you may also experience depression and anxiety. However, it’s
unclear whether depression and anxiety are symptoms of narcolepsy alone or whether they are due to the way narcolepsy affects quality of life. - Excessive sleepiness and cataplexy may affect your social life. For example, you may have difficulty staying awake during social gatherings, or you may lose muscle control when laughing.
- Many people with narcolepsy have a higher body mass index (BMI). This may be due to many factors, such as a lower activity level or a slower metabolism.
- An older 2017 study suggests that people with narcolepsy may have an increased risk for suicidal ideation, although more studies are needed to confirm this.
Don’t worry, living with narcolepsy doesn’t necessarily mean you’ll experience these complications.
Working closely with your healthcare team to address any symptoms or treatment side effects is one of the best ways to avoid or lessen narcolepsy complications.
If you’re experiencing excessive daytime sleepiness or one of the other common symptoms of narcolepsy, talk with your doctor or another healthcare professional.
Daytime sleepiness is common in many types of sleep disorders. Your doctor will ask you about your medical history and perform a physical exam. They’ll look for a history of excessive daytime drowsiness and episodes of sudden loss of muscle control.
Your doctor will likely order an overnight sleep study, a daytime test, and several other tests to determine and confirm the diagnosis.
Here are some common sleep evaluations your doctor may order:
- Polysomnography (PSG) testing: This requires you to spend the night in a medical facility. Clinicians will monitor you and use electrodes while you sleep to measure your brain activity, heart rate and rhythm, eye movement, muscle movement, and breathing.
- Sleep history and questionnaire: Your doctor will ask you for a detailed sleep history, which may include completing the Epworth sleepiness scale (ESS). The ESS is a simple questionnaire. It asks how likely you are to sleep in different circumstances.
- Sleep diary: Your doctor may ask you to keep a detailed diary of your sleep pattern for about a week. This sleep record will help show your doctor the correlation between your alertness and your sleep pattern.
- Monitoring device: An ActiGraph or another home monitoring system can track when and how you fall asleep. You would wear this device like a wristwatch and may use it together with a sleep diary.
- Multiple sleep latency test (MSLT): This determines how long it takes you to fall asleep during the day and how quickly you enter REM sleep. This test is often given the day after a PSG. You’ll need to take four to five naps throughout the day, each 2 hours apart.
- Spinal tap: Although rarely used in clinical practice to diagnose narcolepsy, a doctor might use a spinal tap, or lumbar puncture, to collect cerebrospinal fluid (CSF). This will measure your hypocretin levels. Hypocretin in CSF is expected to be low in people with type 1 narcolepsy. For this test, your doctor will insert a thin needle between two lumbar vertebrae.
Narcolepsy is a chronic condition. Although there’s no cure, treatments can help you manage your symptoms.
Medications, lifestyle adjustments, and avoiding hazardous activities can all play a part in managing this condition.
There are several classes of medications doctors use to treat narcolepsy, such as:
Alerting agents
These include armodafinil (Nuvigil), modafinil (Provigil), and methylphenidate (Ritalin). They may improve wakefulness.
Although side effects are uncommon, they may include nausea, headache, or anxiety. Some patients may experience severe rashes with armodafinil (Nuvigil), modafinil (Provigil).
These drugs may also lower the levels of estrogen. People of child-bearing age who use a birth control pill with estrogen are cautioned to use an additional form of birth control.
Serotonin-norepinephrine reuptake inhibitors (SNRIs)
SNRIs, such as venlafaxine (Effexor), can help treat cataplexy, hallucinations, and sleep paralysis. Side effects may include digestive symptoms, insomnia, and weight gain.
Selective serotonin reuptake inhibitors (SSRIs)
SSRIs, such as fluoxetine (Prozac), can also help regulate sleep and improve your mood. However, side effects, such as lightheadedness and dry mouth, are common.
Tricyclic antidepressants
Tricyclic antidepressants may include amitriptyline and nortriptyline.
They may reduce cataplexy, sleep paralysis, and hallucinations. These older medications can have unpleasant side effects, such as constipation, dry mouth, and urinary retention. They may worsen daytime sleepiness.
Oxybates (Xyrem and Xywav)
These compounds are
Pitolisant (Wakix)
Pitolisant (Wakix) releases histamines in the brain to decrease daytime sleepiness. It has recently been FDA-approved to treat the sleepiness and cataplexy of narcolepsy. It’s not a controlled drug, and side effects may include headache, nausea, anxiety, and insomnia.
Solriamfetol (Sunosi)
Solriamfetol (Sunosi), an alerting medication, is a dopamine and norepinephrine reuptake inhibitor (NDRI). Side effects include anxiety, insomnia, and irritability.
In addition to medications, lifestyle modifications may help ease symptoms. There are also steps you can take to increase the level of support you receive from friends, loved ones, and institutions.
- Tell teaching staff, supervisors, or managers about your condition in case you fall asleep at school or at work.
- Be aware that some narcolepsy treatments will cause you to test positive for stimulants on drug screens for employment. Speak with your employer in advance to prevent misunderstandings.
- Try to avoid heavy meals before bedtime, as they can make it
harder to sleep . - Try taking 10- to 20-minute naps after meals.
- Do what you can to stay on a consistent sleep/wake schedule.
- Avoid nicotine and alcohol, because they can worsen symptoms.
- Exercise regularly. This can help you rest better at night, stay more alert during the day, and help you manage your weight.
- Some states may limit driving privileges for people with narcolepsy. Be sure to check with your local Department of Motor Vehicles (DMV). They can help keep you from endangering yourself and others.
Living with narcolepsy can be challenging and stressful due to episodes of excessive sleepiness in which you may injure yourself or others.
However, you can successfully manage the condition by getting the correct diagnosis, working with your healthcare team to find the best treatment, and staying consistent with your treatment plan. All of these things can help ensure you continue living a healthy life.