Narcolepsy is a chronic neurological condition that affects 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,” or overwhelming urges to fall asleep, and poor fragmented sleep at night.
In many cases, it also causes unexpected and temporary loss of muscle control, known as cataplexy. This can be mistaken for seizure activity, especially in children. This is now 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 tone. People with this type of narcolepsy have episodes of extreme sleepiness and cataplexy during the daytime due to low levels in the brain of a protein called hypocretin. (Hypocretin is sometimes referred to as orexin.)
- Type 2 is narcolepsy without cataplexy. Usually, people with type 2 narcolepsy have normal levels of hypocretin.
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 is a sudden, temporary loss of muscle tone. 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 course, or may go undetected due to medications that suppress it, such as certain antidepressants.
Poorly regulated rapid eye movement (REM) sleep
REM sleep is the sleep stage when you have vivid dreams with loss of muscle tone. It usually starts about
Sleep paralysis is an inability to move or speak while falling asleep, sleeping, or waking. Episodes last only a few seconds or minutes.
Sleep paralysis mimics the paralysis seen during REM sleep. It doesn’t affect eye movements or the ability to breathe, though.
Hallucinations when falling asleep
People with narcolepsy may frequently have vivid dreams that may occur when falling asleep or waking up.
Although people with narcolepsy are excessively sleepy during the daytime, they may have difficulty falling asleep and/or staying asleep at night.
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 regulating your sleep-wake cycles.
Scientists think many factors may cause low hypocretin levels. A gene mutation is associated with low levels of hypocretin. It’s believed that this hereditary deficiency, along with an immune system that attacks healthy cells (i.e an autoimmune issue), contributes to narcolepsy.
Other factors, such as stress, brain trauma, exposure to toxins, and infection, may also play a role.
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: around age 15 and around 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:
- People with narcolepsy also often have depression and anxiety, but it’s not clear whether these are symptoms of narcolepsy or due to its symptoms affecting their quality of life.
- Because of excessive sleepiness and cataplexy, your social life may be affected. For example, you may have difficulty staying awake during social gatherings, or you may lose muscle control when laughing.
- Perhaps because of lower activity levels or a slower metabolism, many people with narcolepsy are overweight. Adults with narcolepsy weigh about 15 to 20 percent more on average than the general population.
- A 2017 study suggests that people with narcolepsy may have an increased risk for suicidal behavior.
Just because you’re living with narcolepsy doesn’t necessarily mean you’ll have 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.
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 tone.
Your doctor will likely order an overnight sleep study, a daytime test as well as several other tests to determine and confirm their diagnosis.
Here are some common sleep evaluations your doctor may order:
- Polysomnography (PSG) testing 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.
- 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.
- 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.
- An ActiGraph or other home monitoring system can keep track of how and when you fall asleep. This device is worn like a wristwatch and may be used together with a sleep diary.
- A multiple sleep latency test (MSLT) 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.
- Your doctor might use a spinal tap, or lumbar puncture, to collect cerebrospinal fluid (CSF) to 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. However, it’s not commonly done in clinical practice to diagnose narcolepsy.
Narcolepsy is a chronic condition. Although it doesn’t have a 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:
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 digestion problems, 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 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 Xywave)
These compunds are
Pitolisant (Wakix) releases histamines in the brain to decrease daytime sleepiness. It’s been recently FDA-approved to treat the sleepiness and cataplexy of narcolepsy. It’s not a controlled drug. Side effects may include headache, nausea, anxiety, and insomnia.
Solriamfetol (Sunosi), an alerting medication, is a norepinephrine and dopamine reuptake inhibitor (NDRI). Side effects include anxiety, insomnia, and irritability.
In addition to medication, there are some lifestyle changes that may help ease symptoms, as well as increase the level of support you may receive from friends, loved ones, and institutions.
- Tell your teachers and supervisors about your condition in case you fall asleep at school or work.
- Be aware that some narcolepsy treatments will cause you to test positive for stimulants on drug screens for employment. Talk to your employer in advance to prevent misunderstandings.
- Try to avoid eating a heavy meal before bedtime, this 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, keep you more alert during the day, and can help manage your weight.
- Some states may limit driving privileges for people with narcolepsy. Be sure to check with your local department of motor vehicles. They can help keep you from endangering anyone and yourself.
Living with narcolepsy can be challenging. It can be stressful to have episodes of excessive sleepiness. There’s the possibility that you may injure yourself or others during an episode.
However, it’s very possible to successfully manage the condition. By getting the correct diagnosis, working with your doctor to find the best treatment for you, and staying consistent with your treatment plan, you can continue living a healthy life.