There are many common myths about narcolepsy, a condition that causes sleep paralysis, extreme tiredness, and hallucinations when waking or falling asleep. Depending on whether on not they have cataplexy (sudden physical collapse), individuals are diagnosed with either type 1 or type 2 narcolepsy. Although its exact cause is unknown, narcolepsy is thought to be caused by a combination of genetic and environmental factors.
In order to disprove several common narcolepsy misconceptions, it is crucial to have an accurate understanding of narcolepsy. The best way to do so is to start by separating narcolepsy facts from fiction.
Myth #1: People with narcolepsy fall asleep suddenly without warning.
Fact: There are usually warning signs associated with narcolepsy.
It is unusual for people with narcolepsy to fall asleep with absolutely no warning. There are many warning signs of narcolepsy, including narcolepsy sleep attack symptoms that family, friends, and acquaintances can watch out for. Some common narcolepsy symptoms include:
- Becoming excessively tired for periods throughout the day (i.e., “sleep attacks”)
- Normal function in between sleep attacks
- Loss of muscle control
- In rare cases, 10% of individuals may exhibit drooping eyelids or full body collapse
- Not being able to move or speak while waking up or falling asleep (sleep paralysis)
- Hallucinations associated with sleep paralysis and dreaming
- Fragmented sleep
- Sleep apnea and insomnia for certain individuals
Myth #2: Narcoleptics fall down a lot.
Fact: Falling is a rare occurrence for people with narcolepsy.
There are two types of narcolepsy. In type 1 narcolepsy, also known as narcolepsy with cataplexy, individuals may experience sudden or unexpected loss of muscle control. A person may also be diagnosed with type 1 narcolepsy if they have decreased levels of hypocretin hormones.
Type 2 narcolepsy is known as narcolepsy without cataplexy. People with type 2 narcolepsy experience excessive tiredness but no muscle weakness. Additionally, hypocretin levels in these individuals are normal.
Only about 10% of individuals diagnosed with narcolepsy collapse due to sudden, severe muscle weakness. Generally, muscle weakness is brought about by strong emotions, like laughing, crying or expressing anger. Because of this, people diagnosed with type 1 narcolepsy are more prone to experiencing falls. Most people with narcolepsy only experience excessive daytime tiredness and do not have muscle weakness or other symptoms.
Myth #3: Narcolepsy is extremely rare.
Fact: Narcolepsy is one of the most common sleep disorders in the United States.
Just how common is narcolepsy? In the United States, 135,000 to 200,000 people have narcolepsy. Basically, every 1 out of 2,000 Americans has narcolepsy. These narcolepsy statistics are higher in some other countries. In Japan, for example, narcolepsy’s prevalence is 1 out of every 600 people.
Unfortunately, many people may have mild forms of narcolepsy and have never been diagnosed or treated. In some cases, a person with narcolepsy may be misdiagnosed, which skews worldwide statistics.
Myth #4: Only adults get narcolepsy.
Fact: Narcolepsy often develops in childhood or adolescence.
While narcolepsy can develop in adulthood, it often develops earlier in childhood or adolescence. The symptoms of narcolepsy in children are usually seen by the age of seven. Currently, scientific research suggests that narcolepsy is caused by a combination of several factors, including:
- Immune system abnormalities
- Low hypocretin levels (type 1 narcolepsy)
- Family history of narcolepsy or related conditions
- Brain tumors
- Other traumatic brain injuries
Myth #5: People with narcolepsy just need more sleep.
Fact: Just getting more sleep is not an adequate treatment for narcolepsy.
For individuals diagnosed with narcolepsy, sleeping more will not necessarily improve their symptoms. This is because many people experience fragmented sleep, insomnia and sleep apnea in addition to narcolepsy — all of which severely impact sleep quality. However, there are various evidence-based narcolepsy treatments that help patients manage their symptoms. Some narcolepsy treatments and recommendations include:
- Using stimulants like amphetamines and modafinil to decrease daytime fatigue and maintain alertness
- Using antidepressants to manage cataplexy (type 1) symptoms
- Using sodium oxybate to reduce daytime drowsiness
- Taking daytime naps
- Maintaining a consistent sleep routine (both day and night)
- Avoiding substances like caffeine, tobacco, alcohol and other drugs before sleep
- Avoiding large meals right before bed
- Exercising daily, based on a person’s age and fitness level
- Develop a relaxing and consistent bedtime routine
Medications and lifestyle changes can help an individual manage their narcolepsy symptoms and hopefully improve their sleep quality.
Myth #6: Narcolepsy is only about being tired all the time.
Fact: Narcolepsy involves more symptoms than just excessive tiredness.
Narcolepsy involves a variety of symptoms ranging from relatively minor to extremely dangerous, depending on the individual and the type of narcolepsy. While all individuals with narcolepsy have excessive daytime tiredness, only about 10% to 25% of individuals with narcolepsy will experience all associated symptoms, including sleep paralysis, hallucinations, and cataplexy.
Narcolepsy may also affect nighttime sleep. When an individual is falling asleep or waking up, they may experience short episodes of sleep paralysis and hallucinations, which can be terrifying. When this happens, individuals cannot move their bodies and remain in a semi-conscious state, similar to cataplexy.
In some cases, people with narcolepsy physically act out their dreams or fall asleep momentarily while still performing everyday tasks like writing or talking. These are known as automatic behaviors.
Myth #7: Narcolepsy isn’t a serious condition.
Fact: Narcolepsy can be an extremely dangerous condition if not managed properly.
There are many dangers associated with narcolepsy, especially if individuals are performing tasks that put themselves and others in danger (e.g., operating a motor vehicle). Type 1 narcolepsy can lead to severe injuries if a person hits their head or does not have a safe place to fall/collapse. Other potential dangers of narcolepsy include:
- Eating (choking hazard)
- Smoking (fire hazard)
- Operating machinery (safety/occupational health hazard)
- Walking (e.g., at crosswalks or in traffic)
Narcolepsy is a very serious condition if symptoms are not managed by a licensed medical professional.
If you or a loved one are struggling with narcolepsy and a co-occurring addiction, The Recovery Village can help. You can receive comprehensive treatment for co-occurring disorders from one of our facilities located across the United States. To learn more about treatment programs, call The Recovery Village to speak with a representative today.