For people with narcolepsy, no amount of sleep can help the feeling of being tired
Symptoms of narcolepsy include hallucinations, sleep paralysis and excessive daytime sleepiness
For people living with narcolepsy, no amount of sleep alleviates the feeling of being tired. While most people are either awake or asleep, narcolepsy feels as if you're never really in either state. For me, it's like having a battery that I can never really charge. I'm always trying to get by on 10 per cent.
When I was 14 or 15, I went to my family doctor because I was tired all the time. But it wasn't until seven years later that I was finally diagnosed with the neurological disorder.
Narcolepsy is relatively common — it's estimated about one in 2,000 people in Canada suffer from it — yet the condition remains underdiagnosed, misdiagnosed and misunderstood.
In the documentary Little Miss Sleepy, I explain what it's like to live with the condition, and I participate in a research study to help scientists learn more about it. The cause of narcolepsy isn't known, and there's no cure.
I hope Little Miss Sleepy gives people a better understanding of narcolepsy and helps those with the disorder feel less alone.
What is narcolepsy?
"Narcolepsy is a chronic neurological disorder that affects the brain's ability to control sleep-wake cycles," according to the National Institute of Neurological Disorders and Stroke (NINDS) in the U.S.
Rapid eye movement (REM) sleep is the stage when most dreams happen. In a typical sleep cycle, REM sleep first happens about 90 minutes after falling asleep, and your brain prevents you from acting out your dreams by temporarily immobilizing your arms and legs. REM sleep, non-REM sleep and wakefulness are distinct states for people without narcolepsy.
For people with narcolepsy, the boundary between sleep and wakefulness can be blurrier. They often enter REM sleep within 15 minutes of falling asleep. And dreams or temporary paralysis might not happen during REM sleep and can happen during wakefulness.
Symptoms typically start to appear in children, adolescents or young adults, but they can happen at any age.
What are the main symptoms?
Excessive daytime sleepiness (EDS): A persistent feeling of sleepiness during the day, even after a good night's rest. It's different from regular drowsiness though: the urge to sleep is sudden and overwhelming — more like a "sleep attack."
Sleep paralysis: The temporary inability to move or speak, which happens when someone is waking up or falling asleep. It can last anywhere from a few seconds to a few minutes.
Cataplexy: A sudden loss of muscle tone triggered by intense emotions, such as excitement, laughter, anger or surprise. Cataplexy can vary in intensity; for example, it can cause a slight weakness confined to a few muscles (drooping eyelids) or involve full collapse (the inability to move, speak or keep your eyes open).
Hallucinations: Seeing, feeling or hearing something that is not real. This typically occurs when a person falls asleep or wakes up. The hallucinations can be vivid and frightening, because a person might not be fully asleep when they happen.
What are some other characteristics?
People with narcolepsy usually have difficulty sleeping at night. Vivid dreams are common.
Some people experience something called automatic behaviours: falling asleep during an activity, like typing or driving, and automatically continuing without realizing it.
Brain fog, trouble concentrating, anxiety and mood disorders like depression can also occur.
Narcolepsy can be hard to diagnose because the symptoms can be similar to other conditions, like sleep apnea, epilepsy and hypothyroidism. Your doctor may want to rule those out before diagnosing. It's possible to have narcolepsy and other sleep disorders — like insomnia (waking up often during the night or not being able to fall asleep), sleep apnea and/or acting out dreams — at the same time.
Are there different types of narcolepsy?
There are two types of narcolepsy, and both cause EDS.
Most people with Type 1 (with cataplexy — the sudden loss of muscle tone explained above) have low levels of the brain hormone hypocretin, while those with Type 2 (without cataplexy) usually have normal levels, and their symptoms are not typically as severe.
In rare cases, secondary narcolepsy can result from a head injury, stroke, brain tumour or another condition that has caused damage to the hypothalamus, which helps regulate sleep.
What causes narcolepsy?
The cause of narcolepsy is unknown, but as mentioned above, people with Type 1 narcolepsy usually have low levels of hypocretin, which helps keep you awake and regulates REM sleep. Researchers think their immune systems may be attacking hypocretin-producing cells in the brain.
Genetics and environmental factors may play a role in narcolepsy, but the risk of a parent passing the disorder to a child is only about one to two per cent, according to the Mayo Clinic. Clusters of narcolepsy can occur in families; up to 10 per cent of people with Type 1 narcolepsy have a close relative with similar symptoms, according to NINDS.
How is narcolepsy diagnosed?
Your health-care provider may refer you to a sleep specialist for a formal diagnosis using two tests: a polysomnogram (PSG) and a multiple sleep latency test (MSLT). You'll have to stay overnight at a sleep centre.
The PSG measures your brain waves, heart rate, breathing and eye movements overnight. It can help establish when in the sleep cycle REM occurs and rule out other disorders, like sleep apnea, that may be causing symptoms.
The MSLT measures how quickly you fall asleep during the day. You take a 20-minute nap every two hours for eight hours, and if you fall asleep often and enter REM sleep within the 20 minutes, you may have narcolepsy.
How is narcolepsy treated?
Although there's no cure for narcolepsy, you can treat it with medication or lifestyle changes depending on the severity.
Neurostimulants are the most common type of medication and help people with narcolepsy stay awake and alert during the day.
There are also serotonin and norepinephrine reuptake inhibitors (SNRIs) or selective serotonin reuptake inhibitors (SSRIs) — which suppress REM sleep and can ease the symptoms of cataplexy, hallucinations and sleep paralysis — as well as antidepressants and other medications.
Besides medication, lifestyle changes include scheduling short, regular naps throughout the day; sticking to a regular sleep schedule; avoiding alcohol, caffeine, nicotine and large meals close to bedtime; and getting regular exercise. Research has shown a link between narcolepsy and obesity, so eating a healthy, balanced diet is also important.
If you think you have narcolepsy, speak to your health-care provider.
Watch Little Miss Sleepy on CBC Gem and The Nature of Things YouTube channel.
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