John is a young man who decided to swim in a lake, alone, on a hot summer day; as he saw his girlfriend approaching the shore, he got excited, waved to her but all of a sudden, he became paralyzed all over. His muscles gave out. He couldn’t swim anymore. Luckily he was wearing the tube which kept him afloat till the episode resolved 20 minutes later. This strange phenomena is an example of cataplexy which is can afflict individuals with narcolepsy.

Donna is a young mother who sought help because she wanted to make sure she is not crazy. When she wakes up in the morning, she sees spiders or other insects crawling on her bedroom walls. Her husband assured her that there are no spiders. These episodes last only few minutes after she wakes up in the morning. She is not crazy but rather is experiencing what is called hypnopompic hallucinations– they are simply a spill-over from the dream state called REM into wake.

John and Donna are narcoleptics. Narcolepsy is a disorder that disrupts the physiology of sleep and wake. Those who suffer from narcolepsy have a number of symptoms, the most common one is excessive daytime sleepiness (EDS), which is experienced as an irresistible urge to fall asleep. Narcoleptics may take unintentional naps and wake up feeling refreshed, only briefly though. Sleepiness can be mistaken for being a slacker or lazy at work or at home. Narcoleptics do not necessarily sleep more. Their sleep rhythm as well as their wake rhythm is disrupted. Sleepiness can be a danger especially during driving or operating heavy machinery.

Cataplexy is very specific for narcolepsy. Sudden loss of muscle tone while you are awake is scary. It is commonly triggered by emotions such as surprise, joy, sadness or sexual orgasm. The muscle weakness can be minor such as a jaw drop, head drop (neck weakness) or sagging of the face while other times, it causes slurred speech, arm and leg weakness (knees buckle) or double vision. These events resolve after few minutes.

Sleep paralysis occurs as the person falls asleep or wakes up. This is not specific to narcolepsy and can be seen in the general population in which case it is referred to as isolated sleep paralysis. Sometimes, they are accompanied by hallucinations or frightening dreams.                 

Narcoleptics have what is called REM intrusion into wake state. When you sleep, you enter the dreaming stage known as stage REM (rapid eye movement) at some point. During this stage, your body becomes relatively paralyzed and your brain is in a dreamy mode. In a narcoleptic who is let’s say, is sitting in a lecture, they can fall asleep and start dreaming immediately. A friend tells a joke and they go into a paralyzed state (cataplexy). They wake up in the morning and they are still dreaming (hallucinations).

Narcolepsy starts in adolescents and up till late 40s. Many are not diagnosed till later, if any. Recognition and awareness is increasing but remains under-diagnosed. Narcoleptics have low levels of a brain chemical called Hypocretic (also known as Orexin) which is produced and secreted from a deep area of the brain known as the hypothalamus.

How is narcolepsy diagnosed? If you suspect narcolepsy, you need to talk to your doctor and you might need to be referred to a sleep medicine specialist. You will need a nighttime sleep study followed by a daytime nap study called the mean sleep latency test (MSLT).

Treatment and management of narcolepsy

  • Young individuals who experience excessive daytime sleepiness, despite getting enough hours of sleep, should be considered for narcolepsy. A referral to a sleep specialist is a wise idea.
  • Doctors prescribe medications to manage the symptoms of narcolepsy. These medications are not curative. Sleepiness is treated with stimulants or wake promoting agents such as Modafinil, Armodafinil, methylphenidate and dextroamphentamine to name a few.
  • Cataplexy, hypnogagic hallucination and sleep paralysis are treated with antidepressants such as imipramine or protriptyline.
  • Sodium oxybate (Xyrem) is FDA approved for narcolepsy. It reduces the daytime sleepiness and cataplexy and improves the sleep quality (less awakenings).
  • If you are diagnosed with narcolepsy it is best that you work with a doctor who is familiar with treating this condition. Adjustment for the first few weeks and months is typical till you and your doctor find the right ones that work for you.
  • Exercise and social engagement are important
  • Light such as sunshine is also important and helpful. Avoid working in a dark environment. Get outdoor exposure, open the windows and perhaps you might benefit from a light box. One of my narcolepsy patients uses light box when she drives. It, along with the medications, helps her stay awake.
  • Some doctors ask you to do drug holiday: take a day or 2 a week and do not take the medication. This is believed to keep the effectiveness of drugs. I have my patients take another class of drugs on drug holidays so they can function. For example, they might take methylphenidate 5 days a week and modafinil on weekends.
  • Avoid high carbohydrate food or heavy meals. Avoid sugar binges.
  • Avoid shift work if possible.
  • Keep a routine wake and sleep time
  • Schedules naps if you are able. Take 15 minutes naps ones or more.
  • Do no drive when you are sleepy.
  • Counseling is important for psychological support to avoid depression and feeling disabled. Many successful and professionals have managed the narcolepsy well with the support of their doctor and family.