Narcolepsy 101: 5 Signs, Definitions and Testing
Narcolepsy is maybe one of the most well known sleep disorders because it is so unique. Falling asleep randomly throughout the day may sound funny, but it is a serious sleep disorder that can impact a persons daily life. Lets explore what narcolepsy is, the 5 signs you may have it, how to get tested, and other facts and info about this condition.
What is narcolepsy?
Simply put, narcolepsy it is a brain condition that impacts your ability to sleep, that both causes you to sleep at random (often inconvenient) times and to have abnormal nighttime sleep habits.
The longer answer?
Narcolepsy is a sleep disorder characterized by excessive sleepiness, sudden daytime sleeping, sleep paralysis, hallucinations and in some cases episodes of cataplexy (explained below).
People with narcolepsy feel very sleepy during the day and may involuntarily fall asleep during normal activities. In narcolepsy, the normal boundary between awake and asleep is blurred, so characteristics of sleeping can occur while a person is awake.
What causes narcolepsy?
Narcolepsy can occur in a person without any real reasoning. It is not inherited. The leading belief is that a mix of environmental and genetic factors can cause the disorder but there is not single cause.
How severe is narcolepsy?
Only about 1 in 2,000 people all over the world have narcolepsy. It can develop slowly over many years, or it can seem to happen suddenly over a few weeks.
Narcolepsy is a chronic condition but the intensity of symptoms can come and go as you age and dependent on lifestyle.
The two Types
Like many sleep disorders, the severity of narcolepsy differs by person. Most generally, there are 2 types of the disorder: Type 1 and Type 2.
Type 1 narcolepsy is narcolepsy with cataplexy and Type 2 is without. As rare as narcolepsy is, Type 1 is even rarer.
What is cataplexy?
Cataplexy is the sudden loss of muscle tone - or, put plainer terms, suddenly going limp or weak. In the case of this condition, it is not a voluntary weakness. The body loses its sense of structure and goes limp often after experiencing emotion. Cataplexy can look like many different things:
losing control over facial expressions
sudden inability to grip or hold things
falling over
head lolls to the side
falling to the ground
muscle twitching
The 5 Main Signs of Narcolepsy
There are 5 main symptoms of narcolepsy, often represented by the acronym CHESS: Cataplexy, Hallucinations, Excessive daytime sleepiness, Sleep paralysis, and Sleep disruption. While all patients with narcolepsy experience excessive daytime sleepiness, they may not experience all 5 symptoms.
Cataplexy
Estimated to be present in 65%-75% of patients with narcolepsy, this most specific symptom of narcolepsy is the sudden, generally brief (less than 2 minutes) loss of muscle tone with retained consciousness. It is usually triggered by strong emotions, such as laughter, surprise, or anger.
2. Hallucinations (Hypnagogic and/or Hypnopompic)
Hallucinations may affect 33%-80% of patients with narcolepsy. Hypnagogic hallucinations are vivid dreamlike experiences that occur while falling asleep. When they happen while waking up, they are called hypnopompic hallucinations. These events may occur with sleep paralysis.
3. Excessive Daytime Sleepiness
This symptom affects 100% of patients with narcolepsy - it is the cardinal symptom of narcolepsy and often the most disabling. Excessive daytime sleepiness is the inability to stay awake and alert during the day, resulting in periods of an extreme need for sleep or unintended lapses into drowsiness or sleep.
4.Sleep Paralysis
Sleep Paralysis may affect 25%-50% of patients with narcolepsy and is defined by disturbing, temporary inability to move voluntary muscles or speak during sleep-wake transitions. It is often accompanied by hypnagogic or hypnopompic hallucinations.
5. Sleep Disruption
Estimated to affect 30%-95% of patients with narcolepsy, sleep disruption is due to frequent awakenings, resulting in poor quality sleep. Narcolepsy is a disorder of sleep-wake state instability, and as such, many patients commonly report disruption of nighttime sleep.
What is the cure for narcolepsy?
Unfortunately, there is no cure for this sleep disorder. Usually, a person with narcolepsy has it for life. That being said, there are medications and lifestyle recommendations that can help manage symptoms and ensure that people with narcolepsy live happy lives.
Do you think you have narcolepsy?
Curious to learn more about your sleep habits and what they mean? Take our quiz, Could I have Narcolepsy? to learn more.
What else your excessive sleepiness could be
If you believe you have narcolepsy because of daytime sleepiness, there could be another cause.
Getting enough sleep
Living in a constant state of sleep deprivation is exhausting. It can take a few weeks to make up for a loss of sleep. Be really honest with yourself about if you are getting enough sleep each night or not.
Depression, anxiety or other mental health challenges
Our sleep and our mental state are so linked together. In fact, our sleep and overall wellness is super linked together. If you are struggling to stay awake during the day, want to stay in bed all the time and feel uninterested in your daily life, please speak to a professional. CAMH has many great resources as well.
Other factors that can impact your sleep
If you need to improve your sleep in general, we have plenty of resources, tips and tricks that you can try.
Getting tested
If you believe you have narcolepsy, speak to your doctor and see about setting up a sleep study. You can take this referral form to your family physician and come see us for a sleep study. (It’s covered by OHIP!)