Updated: March 1, 2020
What is Narcolepsy?
There are two kinds of narcolepsy: one with cataplexy, and the other without. Cataplexy is a sudden loss of muscle control when the person can fall or slur their words and is often caused by an emotion such as laughter or some kind of excitement. During cataplexy, the person is awake.
Narcolepsy without cataplexy is often less severe than with cataplexy, and it's a sleep disorder that can cause the sudden onset of sleep, sleep paralysis, hallucinations, and excessive sleepiness. It affects around 1 in 2,000 people. People with narcolepsy can be very tired during the day, and have vivid hallucinations and sleep paralysis while falling asleep and waking up. They also have disturbed sleep at night because the brain doesn't go through the normal flow through the different phases of sleep-people with narcolepsy can go directly from waking to REM (rapid eye movement) sleep, bypassing light sleep and deep sleep.
Narcolepsy is caused by the brain no longer being able to produce hypocretin, which is produced by a cluster of cells in the hypothalamus. Hypocretin regulates wakefulness and REM. Some people are genetically predisposed to narcolepsy, and it's triggered by the immune system attacking the part of the brain that creates hypocretin. This is why narcolepsy is considered an autoimmune disease, because during an infection, the immune system mistakenly attacks the part of the brain that creates hypocretin instead of the infection. One of the infections that could be a triggering event is the H1N1 influenza virus (a type of the flu).
Many suffer from narcolepsy for years before being diagnosed. It affects males and females equally.
The risks of narcolepsy are serious, the most grave is falling asleep while driving, operating machinery, cooking; or falling onto a hard surface. Outside of accidents, people with narcolepsy tend to be overweight, and they have an increased chance of having depression.
The other health risks of narcolepsy are related to sleep deprivation, which includes:
- higher rates of obesity, stroke, and cardiovascular disease
- higher levels of inflammation
- lower immunity
- reduced hormone balance
- higher rates of Alzheimer's disease
- less impulse control
- poor focus and memory
- reduced decision-making ability
- irritability that can affect relationships
The most common symptoms of narcolepsy are:
- Excessive daytime sleepiness
- Cataplexy-sudden muscle weakness that leads to slurring or words and muscle weakness, often induced by laughter or excitement (this doesn't occur in all people with narcolepsy)
- Hallucinations while falling asleep or waking up
- Sleep paralysis while falling asleep or waking up
If you have these symptoms, you will want to speak to your doctor, who will most likely refer you to a sleep specialist. The sleep specialist will look at your family history (if you have relatives with narcolepsy it's more likely that you have it), history of infections and brain injuries, and autoimmune disorders.
The most common diagnostic tests are:
- Polysomnogram test (PSG): part of a sleep study done at a sleep center, the test records heart rate, blood pressure, eye movement, and brain activity.
- Multiple sleep latency test: a daytime sleep study done after the PSG where you nap for 20 minutes every 2 hours, which will show how fast you fall asleep, how long it takes you to get into the different phases of sleep, how quickly you fall asleep, and whether you go directly into REM sleep right after falling asleep
- Hypocretin test: people with narcolepsy have low levels of hypocretin
Treatments for Narcolepsy
There are medications and lifestyle and behavior changes to help manage narcolepsy, and there is no known cure.
For sleepiness, the following drugs are often prescribed:
- sodium oxybate
For cataplexy, doctors often prescribe antidepressants or sodium oxybate. Antidepressants are often effective because the loss of hypocretin also affects levels of dopamine, serotonin, and norepinephrine.
Good Sleep Hygiene
- go to bed and wake up at the same time every night
- avoid caffeine late in the day and nicotine completely
- avoid exposure to bright lights 90 minutes before bed (this includes screens). Use blue light blockers on your tablet, phone, and computer in the evening
Napping can be an effective tool for you if you suffer from narcolepsy. It will help make up for sleep deficits as long as you follow the basic rules:
- naps should either be 15-20 minutes or 90 minutes, that way you don't wake up during a deeper sleep phase and therefore feel groggy
- nap if and when you feel tired, which is often anywhere between 1-3 in the afternoon, and don't nap too late in the day
Long periods of inactivity can lead to falling asleep. Many experts recommend that everyone (meaning those who don't suffer from narcolepsy) get up and move every 20 minutes. Long periods of sitting has been referred to as the new smoking as it is linked to higher chances of obesity, certain types of cancer, type 2 diabetes, heart disease, and early mortality.
A great way to stay more active while you work is to use an adjustable standing desk or a standing desk converter that goes on top of your existing desk. That way you can alternate from sitting to standing throughout the day. Many people find that for activities that require deep concentration, they sit, and for reading, talking on the phone, watching videos, and other tasks that don't require as much focus, they can stand.
Discover Your Triggers
It's a good idea to keep a journal of what the conditions were when you became very drowsy or experienced cataplexy. Note any conditions such as:
- time of day
- amount of light
- what you were doing (reading, watching tv, talking, etc)
Dealing with this somewhat rare condition can be very stressful and many sufferers find it helpful to go to counseling and/or join a support group.