Narcolepsy

Narcolepsy is a neurological condition that causes excessive daytime sleepiness. People with narcolepsy often experience “sleep attacks” that create an irresistible urge to sleep. The person may fall asleep at dangerous or inappropriate times, such as while driving, operating machinery, or taking a test.

Narcolepsy is a chronic condition. While treatment can help individuals manage symptoms, there is currently no cure to make narcolepsy go away completely. The condition may interfere with one’s social life and emotional well-being, especially when it co-occurs with mental health issues like depression. In these cases, a mental health professional can help the person cope with their narcoleptic symptoms.

Narcolepsy Symptoms

All cases of narcolepsy involve excessive daytime sleepiness. A person may nap multiple times a day or lapse into sleep without warning. This sleepiness occurs regardless of how much sleep the person had the previous night. (That said, the sleepiness may be more severe if a person has comorbid insomnia.)

Another typical symptom is cataplexy, in which a person’s muscles suddenly go weak and can’t be controlled. A person may start bobbing their head, slurring their speech, or even collapse to the ground. Cataplexy is often triggered by strong emotions, usually laughter or excitement. Fear, surprise, or anger can also trigger an episode. A person may experience muscle weakness for several seconds or minutes before recovering. They are typically conscious during the entire period.

Other common symptoms of narcolepsy include:

• Sleep paralysis. Sleep paralysis is a protective measure that prevents people from moving around during REM sleep. However, people with narcolepsy enter REM sleep so quickly that they may experience paralysis while falling asleep or waking up.
• Hallucinations. A person may see vivid and possibly frightening hallucinations right before falling asleep or right after waking up.
• Fragmented nighttime sleep. People with narcolepsy may have trouble spending the entire night asleep. It is common for these individuals to have comorbid insomnia, sleep apnea, or sleepwalking issues.
• Automatic behaviors. Some individuals continue whatever activity they were doing before a sleep attack. Since the person is unconscious during the attack, their ability to do the activity will suffer (for example, a person’s handwriting may turn into scribbles). Upon waking, they will not be able to remember what they did during the episode.

People with narcolepsy are also more likely to experience obesity. This is not because they eat more than the average person, but because they tend to have slower metabolisms. An animal study in Cell Metabolism suggests this is due to a deficiency of orexin, a hormone that affects metabolism, although human trials are needed to confirm the connection.

What Causes Narcolepsy?

There are two types of narcolepsy. Type I involves cataplexy symptoms, and type II does not. Nearly all people with type I narcolepsy have low levels of hypocretin.

Hypocretin is a hormone that regulates sleep cycles and helps people stay awake. In normal sleep, individuals often go through a 60- to 90-minute period of dreamless sleep before entering the dreaming phase (also called the REM phase). Yet people with narcolepsy will often go into the REM phase within the first 15 minutes of sleep.

With the barrier between wakefulness and dreaming mostly gone, individuals may fall directly into sleep during the day. An awake person may experience sensations that normally occur during the REM phase, such as sleep paralysis or dream-like visions. People with unregulated sleep cycles are more likely to wake up at night between phases.

Scientists aren’t fully sure what causes hypocretin deficiency. One common theory is that after being exposed to certain diseases, a person’s immune system may mistakenly attack the neurons that produce hypocretin. Scientists believe this explains why so many narcolepsy cases appeared after the swine flu epidemic of 2009. It could also explain why narcolepsy symptoms often start in the spring after flu season.

However, people with type II narcolepsy often have average levels of hypocretin. In such cases, other factors are likely at play. Research suggests narcolepsy may have a genetic component. Individuals who have narcoleptic relatives are over 10 times as likely as the general public to develop narcolepsy. Narcolepsy can also occur after head trauma, when an injury damages the brain areas that control sleep.

Diagnosing Narcolepsy

Narcolepsy affects roughly 200,000 people in the United States. Yet estimates suggest only one in four people who have narcolepsy have been diagnosed and gotten treatment. In one study of narcolepsy patients, 60% of respondents say they had been misdiagnosed in the past.

Narcolepsy is sometimes confused with hypersomnia, which also involves excessive sleepiness. In simple terms, hypersomnia is characterized by needing more sleep than usual, while narcolepsy is more about having unstable sleep patterns. People with hypersomnia do not have “sleep attacks”—their drive to sleep is more persistent than urgent. They are also less likely to have symptoms such as cataplexy or sleep paralysis.

Clinicians have several tests to help diagnose narcolepsy.

• Multiple Sleep Latency Test: A person is asked to five daytime naps, one every two hours. If the person falls asleep in less than 8 minutes each time, their daytime sleepiness can be considered excessive.
• Polysomnogram: Specialists record a person’s brain and muscle activity as they sleep overnight at a testing center. If a person goes into the REM phase within 15 minutes of falling asleep, they may have narcolepsy.
• Spinal Tap: A clinician does a spinal tap to withdraw a sample of spinal fluid. They can use this sample to measure a person’s hypocretin levels. While this test is more invasive than the others, it is useful in distinguishing narcolepsy from conversion disorder.

If you believe you have narcolepsy, you may wish to see a medical professional. Professional evaluation is necessary to ensure one’s symptoms are due to narcolepsy and not another condition.

Narcolepsy and Daily Life

Narcolepsy can appear at any age. However, symptoms are most likely to appear within one of two periods: between ages 15-25 or between ages 30-35. Individuals who develop narcolepsy before puberty may be at risk for developing more severe symptoms.

Narcolepsy can interfere with a person’s everyday life and well-being. An individual may:

• Avoid relationships for fear that strong emotions will trigger cataplexy.
• Have trouble staying alert during work or school.
• Need assistance with transportation. (Many narcoleptics can drive short distances safely, but some may need help for highway travel or long trips.)
• Be stigmatized as “lazy” or “irresponsible” by people who don’t understand the condition.

Under the Americans with Disabilities Act, people with narcolepsy have a right to have accommodations at work or school. For example, an employee may request to stay late at work to make up any time they spent napping. A student prone to sleep attacks could ask to be provided lecture notes.

Narcolepsy symptoms can pose a safety risk. Over 30% of people with narcolepsy have had accidents while doing everyday activities like cooking. Half of narcoleptics have fallen asleep while driving. A person’s level of risk depends on which situations are most likely to make them sleepy.

IS THERE TREATMENT FOR NARCOLEPSY?

There is no cure for narcolepsy, but treatment can make symptoms easier to manage. Treatment can involve medication, lifestyle changes, and therapy.

There are many medications that can help with narcolepsy. Most clinicians will first prescribe Modafinil or another stimulant to reduce daytime drowsiness. Some people see reduced symptoms when taking tricyclic antidepressants and SSRI antidepressants. Sodium oxybate (Xyrem) is often highly effective at treating cataplexy.

Lifestyle changes can also help people cope with narcolepsy. Potential strategies include:

• Take one or two short naps a day: Try scheduling 20-minute naps during the times of day you tend to be sleepiest. This can help you control when your sleep breaks are rather than being caught off guard.
• Practice good sleep hygiene: Avoid using electronics right before bed, as these can trick your brain into thinking it is daytime. A routine can help you fall asleep easier, so try to go to bed at the same time each night (yes, even on weekends).
• Exercise daily: Try to schedule at least 20 minutes of exercise a day, preferably at least 5 hours before bedtime. Exercise can help boost your daytime energy levels with endorphins and make you sleepier at night.
• Avoid smoking: While nicotine may give you a temporary boost of energy, it can also disrupt your sleep cycle. It is recommended that smokers with narcolepsy take extra safety precautions while handling flammable objects.
• Seek out support: People with narcolepsy may feel isolated, particularly if their symptoms are frequent or severe. There are support groups for people with narcolepsy where individuals can share stories and receive advice.

Psychotherapy can also help people with narcolepsy. People with narcolepsy are more likely to develop sleep issues, depression, and eating disorders. These and other mental health issues can make narcoleptic symptoms worse. A trained therapist can help individuals improve their psychological and emotional health.

References:

1. American Psychological Association. (2015). Diagnostic and statistical manual of mental disorders (5^th ed). Washington, DC: American Psychological Association.
2. Ha, Y. (2017, September 6.) Narcolepsy and obesity: Orexin deficiency may again be to blame. Sleep Review. Retrieved from http://www.sleepreviewmag.com/2017/09/narcolepsy-obesity-orexin-deficiency-may-blame
3. Narcolepsy fact sheet. (n.d.). National Institute of Neurological Disorders and Stroke. Retrieved from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet#3201_8
4. Narcolepsy fast facts. (2015). Narcolepsy Network. Retrieved from https://narcolepsynetwork.org/about-narcolepsy/narcolepsy-fast-facts
5. Narcolepsy. (2010, May 15). Mayo Clinic. Retrieved from http://www.mayoclinic.com/health/narcolepsy/DS00345
6. Safety. (2018, February 21). Retrieved from http://healthysleep.med.harvard.edu/narcolepsy/diagnosing-narcolepsy/getting-a-diagnosis

Last Updated: 02-21-2019