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Sleep Care

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Narcolepsy and Treatment

While he was in high school, Adam was often very tired throughout the day, having difficulty staying awake in class despite sleeping for ten hours the night before.  His parents felt it was just the usual fatigue that adolescents seem to go through at their age.

Now a sophomore in college, Adam finds his daytime tiredness—despite changing his schedule so he can still sleep at least ten hours a night—is beginning to affect his performance in class and negatively impact his social life.  He’s tried drinking several cups of coffee or a few cans of soda throughout the day, but still finds himself fatigued and having difficulty staying alert and focused.  When back at home over winter break from class, his father suggested he visit a sleep specialist and see if there might be anything wrong with his sleep during the night.

Adam explained the situation to the sleep specialist during his appointment, who determined that he might be suffering from narcolepsy—an inability to maintain desired wakefulness and alertness during the day, despite adequate sleep the night before.

More than just feeling tired

It is estimated that about 200,000 Americans suffer from narcolepsy.  World-wide, it’s about as prevalent as multiple sclerosis or Parkinson’s disease in developed countries.  Narcolepsy usually develops as individuals grow older, although symptoms will typically first show up in adolescence or young adulthood and affects both men and women equally.

One of the most frustrating aspects of dealing with narcolepsy is its chief symptom:  excessive daytime sleepiness, despite having a good night’s rest the night before.  Another common trait is cataplexy: a sudden loss of muscle tone usually triggered by strong emotions, such as laughter, anger, or fear.  Hypnogogic hallucinations, or bizarre dream-like experiences that can occur when transitioning from wake to sleep, are another regular symptom of narcolepsy.

Researchers aren’t sure exactly what causes narcolepsy, although studies have indicated a couple of possibilities.  While the occurrences of narcolepsy in families are small, some research has indicated a combination of genetic and environmental factors may play significant roles in developing the disease.  The brain chemical hypocretin has been studied extensively and may offer clues for future treatments, as it functions to regulate wakefulness and rapid eye movement sleep (REM sleep)—two areas for which people with narcolepsy have difficulty maintaining appropriate boundaries.

To be diagnosed with narcolepsy by a sleep specialist, a physical exam and medical history review is required, in conjunction with an overnight sleep study at a sleep lab followed by a multiple sleep latency test, or MSLT.  The MSLT consists of a series of five naps spread about two hours apart throughout the day.  During each nap trial, the specialist evaluates if the patient falls asleep, and if he does, how quickly he falls asleep and what kind of sleep he has (i.e., light sleep, deep sleep, or REM sleep).

Finding a workable solution

The goal for any treatment of narcolepsy is to return the patient to the fullest work, school, home, and social functioning possible.  To accomplish this, a variety of approaches are often utilized.

Medications, such as Modafinil and Sodium oxybate, are commonly used to treat daytime sleepiness and cataplexy, respectively.  Because of its significant role in regulating wakefulness and REM sleep, some researchers estimate that in the future, the standard treatment for narcolepsy will involve some method of hypocretin replacement therapy, possibly through genetic engineering.

According to the American Academy of Sleep Medicine’s 2007 report on treating narcolepsy, regularly scheduled naps (about 10-15 minutes in length) and consistent bedtimes can be beneficial in further reducing daytime sleepiness for individuals—especially in conjunction with medications.  However, a consistent nap and bedtime schedule is generally not sufficient on its own to adequately treat narcolepsy symptoms.

Since the symptoms of narcolepsy can often cause emotional stress, counseling is sometimes appropriate to help an individual adjust to a treatment schedule and living with narcolepsy.  It’s recommended that patients follow up with their sleep specialist or health care provider at least once a year—and preferably once every six months—to assess how treatment is going and make any changes as needed.

After undergoing an overnight sleep study and MSLT the following day, Adam was diagnosed with narcolepsy.  Working with the sleep specialist, he developed a nap schedule that was compatible with his classes, and also takes a stimulant medication to promote wakefulness during the daytime.  “At first, I thought it’d be difficult telling my friends I’d catch up with them a little later since I had to take a nap,” he says.  “Once I explained my situation to them, a few were actually a little jealous I had a medical reason to take a nap every afternoon!”

 

What is a Sleep Study?

 

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