Narcolepsy: Types And Treatments

Medically reviewed by April Justice, LICSW
Updated August 6, 2024by BetterHelp Editorial Team

According to research published in 2023, narcolepsy is estimated to affect 37.7 per 100,000 individuals in the United States. Narcolepsy is a neurological disorder that can cause a person to fall asleep suddenly during the day (these instances are commonly called “sleep attacks”), even during important activities. This disorder typically affects the brain’s capacity to regulate sleep-wake cycles. Even if a person senses that they are rested after sleeping, they may experience excessive daytime sleepiness. 

Additional symptoms may include sleep paralysis, hypnagogic hallucinations (false sensory experiences that take place as a person is falling asleep), and sudden muscle weakness resulting in an inability to move. This disorder can have a significant impact on a person’s functioning at work and home, which can affect their mental health as well. Treatment options usually include prescription medication, lifestyle changes, and therapy.

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Types of narcolepsy

According to the National Institute of Neurological Disorders and Stroke, narcolepsy can be broken down into two major types.

  • Type 1 narcolepsy, which was previously labeled as “narcolepsy with cataplexy,” is typically characterized by a low level of the brain hormone hypocretin. A person with this type may have daytime sleepiness and cataplexy, which typically causes a loss of muscle control and is sometimes triggered by emotional situations. 
  • Type 2 narcolepsy typically causes intense daytime sleepiness but not cataplexy or low hypocretin levels. The symptoms tend to be less severe than those caused by type 1 narcolepsy.

What causes narcolepsy?

Researchers believe that narcolepsy may be caused by a combination of factors, including those listed below:

  • Genetics: Although most people with narcolepsy have no family history of the disorder, there may be a genetic component. As many as 10% of people with type 1 narcolepsy have a family member with similar symptoms. 
  • Brain injury: In rare cases, a brain injury may cause damage to regions of the brain that help control rapid eye movement (REM) sleep and wakefulness. Tumors may also have a similar effect in these brain regions. 
  • Autoimmune diseases: Autoimmune disorders can also play a role in narcolepsy with cataplexy. Autoimmune diseases usually cause the immune system to attack healthy cells. In the case of narcolepsy, a person’s immune system may attack brain cells containing hypocretin, possibly as a result of environmental and genetic factors. 

In recent years, scientists have made progress in understanding the potential genetic causes of narcolepsy. Research shows that the primary cause of type 1 narcolepsy is likely the loss of neurons producing hypocretin in the hypothalamus. 

Researchers have discovered that HLA-DQB1*06:02 (a variation of the gene HLA-DQB1) can increase the risk of narcolepsy. HLA-DQB1 is part of the human leukocyte antigen (HLA) gene family. This group of genes normally produces proteins that help a person’s immune system distinguish good natural proteins from bad proteins produced by bacteria and viruses. 

HLA-DQB1*06:02 may increase the likelihood of an immune system attack on hypocretin neurons. Most people living with narcolepsy possess this gene variation. However, many people have this variation and never develop narcolepsy. This suggests that other environmental and genetic factors may contribute to the development of narcolepsy. 

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Diagnosing narcolepsy

When a person’s symptoms demonstrate a clear pattern, diagnosing narcolepsy can be relatively simple. In other cases, doctors tend to use two tests for the diagnosis of narcolepsy: the nocturnal polysomnogram and the multiple sleep latency test.

Nocturnal polysomnogram

During a nocturnal polysomnogram, clinicians typically measure brain waves, muscle activity, breathing, and eye movements while a person sleeps. Sleep medicine specialists may use this test to discover if a person experiences REM sleep early in the sleep cycle. A polysomnogram may also help doctors determine if a person’s symptoms could be caused by sleep apnea.

Multiple sleep latency test

During a multiple sleep latency test (MSLT), a person is typically given several opportunities to fall asleep every two hours during their normal wake time. The MSLT can help doctors determine the time it takes to fall asleep (sleep latency) and how quickly a person enters the REM sleep stage. A person may be diagnosed with narcolepsy if they fall asleep in under eight minutes and if they reach the REM stage during at least two naps. 

Doctors may also use a blood test to search for human leukocyte antigen (HLA) DQB1*06:02 type, which usually signals a hypocretin deficiency. However, many people test positive for DQB1*06:02, yet don’t have narcolepsy. In these cases, doctors may perform a lumbar puncture to measure the amount of hypocretin-1 in the spinal fluid. 

Treatments for narcolepsy

While researchers haven’t yet found a cure for narcolepsy, doctors may prescribe various medications to help with symptoms, such as nervous system stimulants, amphetamine-like stimulants, histamine antagonists, and antidepressants. Always speak to your doctor before starting, stopping, or changing the way you take medication, or if you experience any side effects.

Individuals living with narcolepsy may also benefit from implementing lifestyle changes. The following are a few changes that may help with narcolepsy symptoms:

  • Maintain a regular sleep schedule. Some people may experience improvement when they keep a regular sleep schedule for both weekdays and weekends or days off. 
  • Schedule short naps. It may help to schedule brief naps for times when daytime drowsiness tends to occur.
  • Exercise regularly. By exercising for at least 20 minutes a day, individuals with narcolepsy may find that they can improve their sleep quality. It’s recommended that they not exercise during the four or five hours before bedtime, as this may increase wakefulness.
  • Avoid stressful situations. Cataplexy can sometimes occur in response to emotional situations. By limiting exposure to stressful situations, people living with narcolepsy may experience fewer cataplexy attacks. 
  • Limit caffeine and alcohol intake. Both caffeine and alcohol can disrupt sleep. While alcohol may induce sleep, it can also negatively affect sleep quality. Those who want to consume caffeine and alcohol may find that it’s best to avoid them for several hours before going to bed.
  • Schedule meals appropriately. Individuals living with narcolepsy may find it more difficult to sleep if they eat a large meal too close to bed time. 
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Living with narcolepsy? Learn coping skills in online therapy

Getting support with narcolepsy

Individuals living with narcolepsy may also benefit from speaking with a licensed mental health professional. Narcolepsy can lead to significant stress and often affects numerous areas of life. A therapist may offer personalized strategies for reducing stress, which could lead to better sleep and fewer cataplexy attacks. 

Individuals whose narcolepsy symptoms make it difficult to leave home for traditional in-person therapy might consider online therapy, which generally allows for therapy sessions through audio, video, or live chat. Online therapy platforms also tend to have a large selection of therapists with various specializations. For example, BetterHelp has a network of more than 30,000 licensed mental health professionals, so individuals can be matched with a therapist who has experience helping people living with narcolepsy and other sleep disorders.

Numerous studies have demonstrated the effectiveness of online therapy, including for anxiety and depression, which can be common comorbid mental disorders in people living with narcolepsy. A therapist can help individuals reduce symptoms of stress and anxiety associated with narcolepsy and any other sleep disorders they may be experiencing.

Takeaway

Narcolepsy can significantly affect a person’s sleep and wake schedule. While falling asleep suddenly may be one of this disorder’s most well-known symptoms, narcolepsy can also involve interrupted sleep, sudden muscle weakness, and sleep paralysis. Treatment plans may include prescription stimulant medications, antidepressants, and lifestyle changes. 

If you’re experiencing symptoms of narcolepsy, you don’t have to face them alone. You may find it helpful to speak with a licensed therapist, whether locally or through an online therapy platform, about the stress that can arise as a result of narcolepsy.

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