What is Narcolepsy and What to Do About It?

What is narcolepsy? It’s a neurological disorder that results when your brain is unable to regulate your sleep wake cycle. In this video I will discuss how to recognize narcolepsy and how it is treated.

Two of the classic symptoms are excessive daytime sleepiness and cataplexy.

Cataplexy is the loss of muscle tone that is triggered by strong emotions such as laughing or anger. The muscle tone loss can be very dramatic such as collapsing to the floor. Or it can be very subtle such as a slight facial droop.

With narcolepsy, REM (rapid eye movement) sleep intrudes into your wakefulness. So while you are awake and talking, you suddenly become overwhelmingly sleepy. When you fall asleep, you immediately start dreaming.

People with narcolepsy are not necessarily sleep deprived. They usually get an adequate amount of sleep, but they can’t control the timing of their sleep.

Signs of narcolepsy
Hypnogogic hallucinations – This is a weird experience that happens at sleep onset. You can see bizarre and vivid images as you are transitioning from being awake to being asleep.

Sleep paralysis usually occurs with the hallucinations. Because your body is normally paralyzed when you dream, and this is called REM atonia, people with narcolepsy can get sleep paralysis at odd times of the day when they fall asleep. The paralysis usually lasts a few seconds to a few minutes. Because the paralysis and hallucinations happen at the same time, it makes the whole experience of falling asleep very creepy.

People without narcolepsy can experience hypnogogic or hypnopompic hallucinations as well. Hypnopompic hallucinations occur during the transition from sleep to waking up. It can be accompanied by significant sleep inertia and even confusion. You may have seen someone close to you wake up confused and talking without making sense for a few minutes until they fully wake up. If you ask them about the nonsensical stuff they were talking about, they probably won’t remember what they said.

Other symptoms of narcolepsy include choppy sleep, nightmares and leg jerking.

Diagnosing narcolepsy
Your doctor may suspect narcolepsy from your symptoms, but the diagnosis requires a sleep study. The sleep study would include a polysomnogram and multiple sleep latency test (MSLT). The polysomnogram measures your muscle activity, breathing and brain activity. The Sleep latency test measures your time to fall asleep. A normal sleep latency is 15-20 minutes. Narcolepsy is diagnosed with a sleep latency of less than 8 minutes and the presence of 2 sleep onset REM periods. With narcolepsy you must show on testing two instances when you go straight from awake to REM.

Narcolepsy treatment
Medication
The gold standard treatment is a medication called Xyrem or sodium oxybate. This medication treats the daytime sleepiness and the cataplexy.

Sodium oxybate is related to the drug GHB – gamma hydroxyl butyrate also known on the street as liquid ecstasy. GHB is illegal, sodium oxybate is not.

If you continue to have daytime sleepiness, your doctor may add a stimulant such as Provigil or Nuvigil to your Xyrem. Sometimes antidepressants are used to treat the cataplexy, hypnagogic hallucinations and sleep paralysis.

Behavioral treatment
We usually recommend people take at least three scheduled 10-15minute naps during the day to help with the sleepiness. It may help prevent the sleepy episode from occurring by napping BEFORE you get sleepy. With this approach, you are sleeping on your terms and not having it creep up on you while you are at a traffic light.

Narcolepsy usually develops in late adolescence or early adulthood. It can go undetected in many people for years, but if you are age 50, and only recently having trouble staying awake during meetings, it’s probably not narcolepsy.

The lecture in this series is on movement disorders that interfere with your sleep. That will be posted next Wednesday. Stay tuned.

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