Narcolepsy

Fact-Checked

Written By: Mallorie Stallings
Medically Reviewed By: Dr. Sherrie Neustein

 

Narcolepsy is an uncommon neurological sleep disorder that about one in 2,000 people have. The disorder causes symptoms like extreme daytime sleepiness, sleep paralysis, hallucinations, and cataplexy, or a brief loss of muscle tone. Narcolepsy symptoms can majorly disrupt a person’s daily life and emotional wellbeing. Fortunately, with treatment, symptoms can be managed.

What Is Narcolepsy?

Narcolepsy is a lifelong condition that affects the brain’s ability to regulate sleep-wake cycles. Both men and women can have narcolepsy. In addition to feeling sleepy most of the time, people with narcolepsy may suddenly fall asleep in the middle of their day or experience hallucinations while falling asleep or waking up. These symptoms can interfere with day-to-day activities and cause emotional distress and embarrassment.

In healthy sleep, a person cycles through different stages of sleep through the night, starting with light sleep, then progressing to deep sleep as brain waves slow down. You enter rapid eye movement (REM) sleep about 60 to 90 minutes after falling asleep. In REM sleep, your brain activity picks back up, resembling that of wakefulness, and you dream. At the same time, your body experiences temporary loss of muscle tone to prevent you from acting out your dreams.

In people with narcolepsy, the condition causes them to enter REM sleep more quickly, within the first 15 minutes after falling asleep. They may also enter REM sleep during the day, from wakefulness. As a result, they may be prone to experience REM-like symptoms when they’re awake, such as sleep paralysis or dream-like hallucinations.

Symptoms of Narcolepsy

Symptoms of narcolepsy may begin at any point in adulthood, but most commonly appear during the teen years into young adulthood.

Excessive Daytime Sleepiness

Excessive sleepiness is the most common symptom of narcolepsy. While people with narcolepsy can experience other symptoms to varying extents, they all experience excessive daytime sleepiness. No matter how much sleep they get, people with narcolepsy tend to feel tired during the day. They may initially feel refreshed upon waking up, but their sleepiness often returns within a few hours.

Sleep Attacks

For many people with narcolepsy, sleepiness comes on suddenly, in what is known as a sleep attack. Sleep attacks are more likely to occur when the person isn’t doing much physical activity, such as watching TV. However, it is possible for a sleep attack to occur when the person is doing something more active, like eating.

Sleep Paralysis

Sleep paralysis occurs when the mind is awake but the body stays paralyzed, albeit briefly, while a person is waking up or falling asleep. For a few seconds to a few minutes, a person experiencing sleep paralysis feels unable to move or speak. Sleep paralysis occurs when characteristics of REM sleep bleeds into the transition between sleep and wakefulness.

Almost 8% of people experience sleep paralysis at least once during their life, but it’s a common occurrence for people with narcolepsy.

Hallucinations

Sleep paralysis is often accompanied by dream-like hallucinations that occur right as a person is falling asleep or waking up. The hallucinations often feel very vivid and can be quite frightening, even if the person knows they’re not real. Someone experiencing sleep paralysis and a hallucination at once may sense a person standing in the corner of the room, or feel like they’re having an out-of-body experience or levitating.

Between 33% to 80% of people with type 1 narcolepsy experience hallucinations, sleep paralysis, or both symptoms.

Cataplexy

Cataplexy describes a sudden loss of muscle tone that occurs when a person is awake. Typically, an episode of cataplexy lasts less than two minutes, but the person remains awake the whole time, which can make it unnerving, like sleep paralysis. These episodes are usually brought on by strong emotions, like laughter or anger.

The frequency of cataplexy can differ from person to person. Some people with narcolepsy experience episodes of cataplexy multiple times a day, while others experience it only once or twice in their lifetime. The physical effects can vary too, from the head or eyelids drooping to the person collapsing to the floor. Stress and sleep deprivation can exacerbate cataplexy.

Insomnia

Because their brains have difficulty managing sleep-wake cycles, people with narcolepsy are likely to have trouble staying asleep through the night. Around 28% of people with narcolepsy also have insomnia. Narcolepsy increases a person's risk of other sleep disorders as well, such as periodic leg movement disorder, REM sleep behavior disorder, and obstructive sleep apnea.

Automatic Behavior

People with narcolepsy may experience brief episodes of sleep that last just a few seconds, but keep acting on auto-pilot during that time. Typically, these microsleeps occur in the middle of doing a routine, everyday activity, like driving to work. By the time they arrive, they may not remember how they got there. As a result, people with narcolepsy have a three to four times higher risk of being in a drowsy driving accident.

Types of Narcolepsy

There are two types of narcolepsy:

  • Type 1 Narcolepsy: People with type 1 narcolepsy have excessive daytime sleepiness as well as cataplexy, extremely low hypocretin levels, or both. Type 1 narcolepsy is the more common of the two types.
  • Type 2 Narcolepsy: People with type 2 narcolepsy have excessive daytime sleepiness, but no cataplexy, and most also have normal hypocretin levels. Type 2 narcolepsy only affects around 15% to 36% of people with narcolepsy. People may initially have type 2 narcolepsy and develop cataplexy later on, at which time they’d be diagnosed as having type 1 narcolepsy.

Causes of Narcolepsy

Type 1 narcolepsy is caused by extremely low levels or a loss of orexin neurons in the hypothalamus. Also known as hypocretins, these brain chemicals are responsible for helping you feel awake. Without sufficient levels of hypocretins, the brain has difficulty regulating sleep-wake cycles properly, which may explain why people with narcolepsy have trouble staying awake and can suddenly enter REM sleep during the day.

Some researchers theorize that an autoimmune reaction causes people with narcolepsy to lose their orexin neurons. While a loss of orexins is the primary cause of narcolepsy, people may also develop narcolepsy if they develop a brain tumor or injury to their hypothalamus.  Narcolepsy type 1 has also been linked to swine flu and the vaccine that prevents it, Pandemrix.

People who have a family member with narcolepsy have a 10 to 40 times higher risk of developing narcolepsy. However, because narcolepsy is so rare, their overall risk is still low, around 1% to 2%.

How Is Narcolepsy Treated?

There is no cure for narcolepsy, but symptoms can be successfully managed with treatment. Narcolepsy treatment often involves a mix of medication, lifestyle changes, and better sleep hygiene.

Medications

Various medications are used to treat narcolepsy, including modafinil, sodium oxybate, pitolisant, solriamfetol, methylphenidate, and antidepressants. Stimulants like modafinil and methylphenidate help people stay away during the day. Sodium oxybate, selective serotonin reuptake inhibitors (SSRIs), and serotonin-norepinephrine reuptake inhibitors (SNRIs) help manage cataplexy by suppressing REM sleep.

Sleep Hygiene

Certain sleep hygiene improvements can be helpful for people with narcolepsy:

  • Avoiding substances that disturb sleep, like nicotine and alcohol
  • Avoiding heavy meals before bed
  • Exercising regularly
  • Following a regular sleep schedule
  • Scheduling 15 to 20-minute naps to boost alertness during the day
  • Adopting a relaxing bedtime routine

Lifestyle Changes

The risks of drowsy driving are higher for people with narcolepsy. To reduce the risk of having a car crash, people with narcolepsy might choose to only drive short distances. They also might choose not to drive after they've eaten, drank alcohol, or taken a sedative. Napping before driving might also help. For longer drives, people with narcolepsy should take regular breaks to nap, or drive with someone else and drive in shifts.

Narcolepsy can be challenging to live with, but talking with loved ones can make it easier. Talking with supervisors and teachers can also help, as they can arrange for accommodations at work and school.

When to Talk to Your Doctor

People with narcolepsy often go undiagnosed for years. If you’re struggling with staying awake during the day or getting restful sleep, talk to your doctor. If they suspect narcolepsy, they will likely refer you to a sleep center for additional testing, like an overnight sleep study.

Narcolepsy is not curable, but with treatment, you can manage symptoms and enjoy significant improvement to your quality of life.

References

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  3. 3. Accessed on November 16, 2021.https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet
  4. 4. Accessed on November 16, 2021.https://pubmed.ncbi.nlm.nih.gov/30526757/
  5. 5. Accessed on November 16, 2021.https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Understanding-Sleep
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