What Is Narcolepsy?
About one in 2,000 people in the U.S. have narcolepsy. Narcolepsy can impact almost every aspect of your patient's life. It's a lifelong sleep disorder causing your patient to feel overwhelmingly tired. It's also dangerous since your patient can have a sleep attack or excessive sleepiness any time of the day and during any activity such as walking, eating, or driving.
Many people don't even realize they have this sleep disorder. So, what is narcolepsy, and how are your patients diagnosed with it since its symptoms are similar to other mental and medical conditions and certain medications?
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What is Narcolepsy?
Narcolepsy is a lifelong, neurological disorder that affects your patient's control of wakefulness and sleep. Your patients may experience excessive daytime sleepiness (EDS) and uncontrollable, intermittent sleep attacks. These sudden sleep episodes can happen at any time during the day and during any type of activity.
During a normal sleep cycle, people first enter into the early sleep stages followed by deeper stages of sleep. After around 90 minutes or so, they go into rapid eye movement (REM) sleep. When your patients suffer from narcolepsy, however, they fall directly into a REM sleep, sometimes almost instantly, during their waking hours.
Usually, narcolepsy affects people who are between 15 and 25 years old, however, it can occur at any age. Many times, narcolepsy goes undiagnosed and untreated.
What Causes Narcolepsy?
There is no known cause of narcolepsy, but scientists have been making progress in identifying genes that are greatly associated with this disorder. It's these genes that control chemical production in your patient's brain that signal awake and sleep cycles. Several experts believe a deficiency in your brain's production of the specific chemical hypocretin is what causes narcolepsy.
Additionally, researchers have found abnormalities in different areas of the brain that help regulate REM sleep. Apparently, these abnormalities contribute to the development of symptoms. And, experts think that there's a possibility that narcolepsy affects numerous factors that combine to cause REM sleep disturbances and neurological dysfunction.
What Are the Symptoms of Narcolepsy?
Narcolepsy symptoms include:
- Excessive daytime sleepiness that leads to an overpowering sense of fatigue and tiredness throughout the day. Commonly, EDS interferes with your patients' everyday activities regardless of whether they had sufficient sleep the night before or not. If your patient has EDS, they'll likely report a lack of concentration or energy, mental cloudiness, a depressed mood, memory lapses and/or extreme exhaustion.
- Sleep attacks resulting in your patient having an overpowering urge to sleep or micro-naps, which cause your patient to fall asleep for several seconds.
- Poor sleep quality due to disrupted sleep-wake patterns.
- REM interruption into daytime wakefulness.
- Irregular REM sleep that only sleep lab tests can detect.
- Cataplexy, or episodes of no voluntary muscle control or reflex. The patient experiences broken speech, slack jaw, total weakness in their arms, legs, face, and trunk or buckled knees without much warning during strong emotions like surprise, joy, or anger.
- Hallucinations or visual events your patient experiences when they're awakening or falling asleep. These hallucinations are typically frightening and vivid. They're usually visual. However, any of their senses may be involved. During awakening, these are called hypnopompic hallucinations, while during sleep onset, they are called hypnagogic hallucinations.
- Sleep paralysis or REM sleep with associated body limpness. Your patient is unable to speak or move temporarily while waking up or falling asleep. They're brief episodes generally that only last for no more than a couple minutes. Your patient recovers quickly after the episode and gains the full capacity to speak and move.
With narcolepsy, your patient's natural boundary between asleep and awake is blurred; therefore, sleeping characteristics may occur while they're awake. Cataplexy is a good example. It's REM sleep's muscle paralysis during your patient's waking hours. It will cause them to lose muscle tone that results in weakness of their legs, arms or face or a slack jaw. Patients with narcolepsy may experience paralysis and dream-like hallucinations as they're waking up or falling asleep, as well as vivid nightmares and disrupted nighttime sleep.
Patients with narcolepsy with cataplexy are deficient in their brain's chemical, hypocretin. This chemical acts on the brain's alerting systems, keeping your patients awake and regulating their sleep-wake cycles. In your patients with narcolepsy, they have a hypocretin production deficiency due to a damaged hypothalamus (area of the brain that contains clusters of cells or small nuclei that produce the chemical). When they lack hypocretin, they have trouble staying awake and will also experience sleep-wake cycle disruptions.
Symptoms of narcolepsy appear during childhood or the adolescent years. However, many patients go years before they get an accurate diagnosis, despite the symptoms.
How is Narcolepsy Diagnosed?
A physician obtains the exhaustive medical history of the patient and performs a physical exam. These are the essential first steps of making an accurate diagnosis. From there, the physician will likely refer the patient to you, the sleep technologist, so you can perform specialized tests in the sleep lab or clinic to confirm the diagnosis.
Two essential tests you'll need to perform to confirm a narcolepsy diagnosis are the multiple sleep latency test (MSLT) and the polysomnogram (PSG).
With the overnight PSG, you'll take continuous multiple measurements through the night while your patient sleeps. This allows you to document any abnormalities in their sleep cycle. PSG testing can also help you identify if your patient experiences episodes of REM sleep during their sleep cycle at abnormal times, thereby eliminating the possibility that the symptoms they're experiencing are due to another condition.
Even if your patient shows definite cataplexy with their narcolepsy, you still need to conduct a sleep study to rule out other potential sleep disorders like sleep apnea that contribute to their EDS. A PSG MUST be done prior to an MSLT.
Multiple Sleep Latency Test (MSLT)
You perform the MSLT during the day where you'll measure your patient's tendency to fall asleep and to learn if your patient experiences isolated events of REM sleep during their waking hours at inappropriate times. You'll typically have your patient take 4 or 5 brief naps scheduled a couple hours apart for this test.
What Are the Treatment Options for Narcolepsy?
There are several options for narcolepsy treatment once your patient has a diagnosis of narcolepsy. These include:
While there's no cure for narcolepsy, the patient's EDS, cataplexy, and other symptoms can be controlled with drug treatment. For instance, amphetamine-like stimulants might be used to control sleepiness and antidepressant drugs to control abnormal REM sleep symptoms.
Xyrem is a new drug approved for patients with narcolepsy with cataplexy. Xyrem will help your patients to get better sleep at night which, in turn, will help them be less sleepy in the daytime. Remember that medication will help these patients significantly, but won't cure them.
Although most narcolepsy patients are prescribed medications to help maintain alertness, there are also things you can suggest they do for themselves to increase their alertness. Have them incorporate a few or all of the suggestions below into their daily routine.
Establishing Positive Sleep Habits
No matter who you are, you're going to feel sleepy the next day after a night of poor sleep, and this is particularly true for your patients with narcolepsy. Have your patients determine how much sleep they need each night. Most adults require between seven to nine hours of sleep; teenagers usually need around nine to 10. Help your patient establish good sleeping habits by offering them these recommendations:
- Establish consistent times they go to bed and get up in the morning to create a regular routine for their brain and body.
- Keep the bedroom comfortable and quiet. Remove any distractions like the TV, cell phone, or computer.
- Avoid stimulating activities like watching TV or checking email if they wake up during the night. Reading a magazine or book for 10 minutes or listening to music may help them fall back to sleep.
- Avoid coffee and other stimulants in the late afternoon or nighttime.
Remind patients hat if they take a wake-promoting medication in the afternoon to keep them awake and avoid sleep attacks, they should take it early in the day so that it wears off before they go to bed at night.
Taking Daytime Naps
Your patient may find daytime naps to be refreshing and improve their alertness for a few hours afterward. But, they should limit their naps to 20 minutes since it can be hard for them to wake up from a deep sleep after taking a long nap. Not to mention, long naps in the afternoon can make it more difficult for them to fall asleep at night.
Have them schedule their naps around the times they feel are the hardest for them to stay awake. Many people find the time to be 2pm or 3pm. If your patient suffers from severe sleepiness, they may need an extra nap in the late morning. Also, they may want to take a nap before driving to improve their alertness.
Avoiding Alcohol, Caffeine, and Nicotine
Your patient can worsen their symptoms by using substances like these — particularly using alcohol at night.
Medications for depression, allergies, seizures, or anxiety can increase or cause sleepiness. Ensure your patient tells you about all medications they're taking.
Regular, moderate exercise at least four to five hours before your patient's bedtime can help them sleep better at night and feel more awake in the daytime.
Avoiding a Heavy Meal
Patients with narcolepsy may feel particularly drowsy after they eat a heavy meal; especially a meal that's high in carbohydrates. Have your patients make their meals smaller.
Your patients may not realize they have narcolepsy, and it may take years to recognize. Since there are many different medical disorders that cause fatigue, you may not even consider narcolepsy at first.
- Narcolepsy is a lifelong sleep disorder that can affect anyone.
- Characteristics of narcolepsy are excessive daytime sleepiness and sleep attacks.
- Patients might not realize they have narcolepsy.
- There are no known causes of narcolepsy.
- A polysomnogram (PSG) and Multiple sleep latency test (MSLT) are important tests for a narcolepsy diagnosis.
- Medication and lifestyle adjustments are treatment options for narcolepsy.
While there have been new discoveries with narcolepsy and other types of sleep disorders, patients with narcolepsy can live challenging lives. They'll need proper treatment along with support from friends and family to help them cope with this condition.
If you're looking to advance your career in sleep technology, be sure to download your copy of this must-have Sleep Technology Terms and Definitions eBook.
About Kevin Asp, CRT, RPSGT
Because of the implementation of his best practices of Implementing Inbound Marketing in its Medical Practice, he turned the once stagnant online presence of Alaska Sleep Clinic to that of "The Most Trafficked Sleep Center Website in the World" in just 18 months time. He is the President and CEO of inboundMed and enjoys helping sleep centers across the globe grow their business through his unique vision and experience of over 27 years in sleep medicine.