Maybe you’ve seen one of those cute YouTube videos featuring narcoleptic dogs falling asleep mid-fetch. The reality is that narcolepsy is far from cute, and can even be quite dangerous. About 1 in every 2,000 Americans is diagnosed with narcolepsy, but studies suggest that many people go undiagnosed because the symptoms can be confused with other disorders.
People with narcolepsy often live difficult lives until they can find treatments that work for them. So what’s the first step? Learning the narcolepsy facts.
What is Narcolepsy?
The definition of narcolepsy according to The International Classification of Sleep Disorders is “a disorder of unknown etiology that is characterized by excessive sleepiness that typically is associated with cataplexy and other REM sleep phenomena, such as sleep paralysis and hypnagogic hallucination.” Sound confusing? Don’t worry—in layman’s terms, narcolepsy is a chronic neurological disorder that affects the control of sleep and wakefulness. Narcolepsy most often includes excessive daytime sleepiness, including uncontrollable episodes of falling asleep, even during activities that demand attention.
For people with narcolepsy, REM sleep occurs almost immediately upon falling asleep at night and intermittently throughout the day. Because of this, people with narcolepsy often experience cataplexy, sleep paralysis, and dream-like hallucinations. There are not different types of narcolepsy, but symptoms do vary from person to person. Cataplexy is present in most narcolepsy cases; it is characterized by a sudden loss of muscle tone that makes a body part or the whole body unable to move. Cataplexy is often triggered by strong emotions, such as anger, excitement, or even laughter.
Narcoleptics usually start experiencing symptoms between the ages of 15 and 30. The disorder does not go away but can be maintained with treatment and awareness.
Is Narcolepsy Genetic?
Although genetics alone are not sufficient to cause narcolepsy, close relatives of people with narcolepsy have a statistically higher risk of developing the disorder themselves, although only slightly. At most, 10 percent of people with narcolepsy report that they have a close relative with the disorder.
The exact cause of narcolepsy is unknown, thought it is definitely related to the central nervous system. Since the late 1990s, studies have suggested that people with narcolepsy have an insufficient amount of a substance in the brain called orexin that normally controls the sleeping/waking cycle. They have also discovered that the nerves containing orexin have degenerated, meaning narcolepsy could be a “neurodegenerative” disorder. Researches have also proposed that it is an autoimmune disorder. Although there are no conclusive answers as of yet, the disorder is currently undergoing extensive research.
Living with Narcolepsy
The first step to living with narcolepsy is the diagnosis. Diagnosing narcolepsy starts with a visit to the doctor’s office. The doctor will likely go over the patient’s sleep history with and ask questions to rule out other disorders. If the doctor thinks that a narcolepsy diagnosis is likely, he or she will likely send the patient to a sleep specialist at a sleep center, where more decisive tests will be done. The tests will likely require staying overnight at the sleep center so that brain waves, sleep cycles, and waking hours can all be monitored.
Once a narcolepsy diagnosis has been confirmed, treatment can commence. Although there is no “cure” for narcolepsy, the majority of the symptoms can be kept at bay with drug treatments prescribed be a doctor. Excessive daytime sleepiness is treated with amphetamine-like stimulants, and anti-depressants are used to take care of the abnormal REM sleep cycle. For most narcoleptics, these drugs are quite effective when taken consistently and as directed.
Living with narcolepsy also means developing a lifestyle that is safe and healthy through sleep hygiene, support systems, and cautious behavior. “Sleep hygiene” is a very important part of treating narcolepsy, even if drugs are also being used. Some examples of good sleep hygiene for narcoleptics are
- Avoid caffeinated beverages and alcohol after lunch.
- Exercise on a regular basis, at least 3 hours prior to bedtime.
- Do not use your bed for anything other than sleeping and intimacy (A good idea is to keep the television in another room).
- Follow a schedule: go to bed and wake up and the same time each day.
- If you are able to take several short naps a day, do so.
- Make sure your sleep schedule allows for adequate hours of nighttime sleep; a doctor can discuss how many hours are needed on an individual basis.
- Some people believe that following a special narcolepsy diet can reduce symptoms.
All these tips, combined with drug treatment when necessary, are usually successful in decreasing narcolepsy symptoms. However, narcolepsy is a sporadic disorder, and one can never be too careful. A single episode can turn disastrous depending on the situation (falling asleep at the wheel, for instance). The best thing to do is to develop a support system. This means informing friends, colleagues, family members, and teachers about the disorder. Not only will this prevent them from mistaking narcoleptic behavior as laziness or lack of ambition, these people can help identify the best coping mechanisms for the environment. For example, perhaps a manager will suggest breaking up monotonous tasks during the day to avoid sleep attacks.
Those living with narcolepsy must always be cautious and plan ahead for situations. For example, if someone with narcolepsy must make a long drive, it is important to plan regular naps, exercise breaks, and even caffeine breaks into the driving schedule. With narcolepsy, you’re always better safe than sorry. Finally, those living with narcolepsy can gain helpful tips and support from joining a patient association. These groups remind narcoleptics that they are not alone!
Narcolepsy Statistics & Interesting Facts About Narcolepsy
Here are some things you may have not known about narcolepsy:
- It is estimated that narcolepsy affects about 200,000 Americans, only 50,000 of which are diagnosed
- Narcolepsy is often mistaken as depression, epilepsy, and even insomnia
- Narcolepsp appears throughout the world in every racial and ethnic group. In Japan, one in every 600 people is diagnosed with narcolepsy.
- Narcolepsy affects both men and women, about equally.
- People with untreated narcolepsy are 10 times more likely to be in a car accident than the average person.
- Narcolepsy is as widespread as Parkinson’s disease or multiple sclerosis, though it is less well known.
- Many older patients have noted that their narcolepsy symptoms have decreased after the age of 60.
And last, but not least…
I introduce you to Skeeter, the narcoleptic poodle: