Narcolepsy is a sleep disorder that causes individuals to become extremely sleepy during regular waking hours. Narcolepsy can also be associated with severe muscle weakness. You might envision someone with narcolepsy suddenly falling asleep while talking to you, but that rarely happens. However, some people who have narcolepsy also suffer from cataplexy. With cataplexy the muscles go completely flaccid; therefore if you were standing and the muscles of your legs gave out, you would fall.
Normally, it takes about an hour and a half for us to get into the REM cycle of sleep. The REM cycle is the 5th stage of sleep. Conversely, people with narcolepsy can fall instantly into REM sleep. An individual may have an incredible need to sleep when they should be awake and alert. Individuals with narcolepsy may also suffer from sleep paralysis and dreams that occur either when they are nodding off or waking up.
Personal experience with a friend who has narcolepsy
One of my friends has narcolepsy, and she occasionally has a tremendous need to nod off. I’ve been with her while she was driving and it was very scary. Turning the radio on high and opening a window never helped her to stay awake. She would have to pull the vehicle over and succumb to the need to nap. As soon as she would doze off she would wake up. There have been times that I have had to drive her car for her because she couldn’t keep herself awake. I urged her to go to the doctor about her symptoms and it was discovered that she had an underlying condition, a brain chemical deficiency – hypocretin – that was causing her to have narcolepsy. After my friend was given medication I never saw her have another episode of narcolepsy.
What causes narcolepsy?
It’s not totally understood what causes narcolepsy. In some cases, it is thought to be an autoimmune disorder, and in other cases an infection or head injury could possibly be factors. Most people who suffer from narcolepsy have a deficiency of two brain chemicals, hypocretin -1 and hypocretin-2. These chemicals help to regulate the levels of sleep and wakefulness.
What are the symptoms of narcolepsy?
The symptoms of narcolepsy include:
Urgent need to sleep during normal waking hours
Cataplexy (complete loss of muscle tone in the voluntary muscles)
Sudden emotional reactions
Hallucinations when falling asleep or waking up
Sleep paralysis when going to sleep or waking up
Automatic behavior during sleep but has no memory of behavior or activity
Restlessness during the night or normal hours of sleep
How is narcolepsy diagnosed?
Oftentimes people will know they have a problem sleeping, but will not recognize that they may have a real medical problem. Once a doctor takes a history and physical, the individual will be sent to a sleep specialist. A medical test may also be done which requires a spinal tap. The test will determine the level of hypocretin in the cerebrospinal fluid. Most people who suffer from narcolepsy have low levels of this brain chemical.
A sleep specialist may ask you to fill out a questionnaire called the Epworth Sleepiness Scale. This scale will give the doctor relevant information about your level of sleepiness. You may also be asked to wear a computerized device called an actigraph which will record your sleep patterns.
A sleep specialist may have you spend a night in a sleep lab to have a test called a polysomnogram. A polysomnogram measures brain signals, muscle contractions, eye movements, and heart rate while you are asleep. For this test you will have electrodes placed on your scalp, which may resemble something like an EEG.
Another test, multiple sleep latency test (MSLT) may be done to measure the speed in which you fall asleep multiple times. This test will differentiate between normal REM sleep and narcolepsy.
How is narcolepsy treated?
Some tricyclic and SSRI antidepressants can be used to treat narcolepsy. There is no cure for narcolepsy, but it can be managed.
Lifestyle changes may also help to relieve the symptoms of narcolepsy. For instance, taking naps during the day. The hours that you feel the sleepiest should be the times you schedule a nap.
Other lifestyle changes may be to refrain from smoking, restrict alcohol and caffeine before going to bed.
Most people who have narcolepsy don’t get good restorative sleep during the night (or regular hours of sleep). It may also help to try and improve your regular hours of sleep. If you usually keep a light on or a TV on when you go to bed, it may help to shut them off and allow yourself to wind down to sleep. It is important to avoid being stimulated during the time during your hours of sleep.
Pharmaceutical researchers are trying to develop a drug that will replace the brain chemicals that are low in people who have narcolepsy. Once a drug is developed and approved for use, narcolepsy should be able to be managed in much the same way that diabetes is managed with medication.