MYTH 1: Narcolepsy is extremely rare.
FACT: Narcolepsy is one of the most common sleep disorders
While we don’t have stats for SA, narcolepsy is reported to occur in about 1 in 2 000 people in the US1,2 and 1 in 600 people in Japan3. And researchers believe the number is significantly higher as people with narcolepsy are often misdiagnosed with other conditions like emotional problems or psychiatric disorders.1,4 In fact the Jacksonville Sleep Center (JSC) estimates that as few as 25% of people suffering from narcolepsy in the US are properly diagnosed and receiving treatment.5 The National Organization for Rare Disorders (NORD) explained that the challenge with diagnosis is that the development and severity of symptoms associated with narcolepsy vary greatly from one person to another. “The onset of symptoms initially occurs one at a time; appearance of new symptoms may be separated by years, with sleepiness generally preceding cataplexy. Narcolepsy usually begins in an adolescent whose initial symptoms are mild but worsen with age. Sometimes symptoms do not change for months, while at other times symptoms may change very quickly.” Furthermore, narcolepsy can present with several symptoms that are often similar to other sleep disorders.5
MYTH 2: People with narcolepsy collapse all the time.
FACT: Only a small percentage of people with narcolepsy experience this.
Cataplexy is the sudden loss of muscle tone while a person is awake resulting in weakness and loss of voluntary muscle control the National Institute of Neurological Disorders and Stroke (NIH) explained. Attacks might involve either a few muscles or the entire body, last only a few seconds, or several minutes. However, even during the most serious episodes during which individuals are unable to move, speak, or keep their eyes open, people are always fully conscious. Generally triggered by sudden, strong emotions like laughing, fear, anger, stress, or excitement.1 As a result, many people with narcolepsy spend their lives avoiding situations that evoke strong emotions. This can have a hugely negative impact on their personal lives.
MYTH 3: Narcolepsy is only about falling asleep all the time
FACT: Narcolepsy involves more symptoms than just excessive tiredness
Narcolepsy can present with several symptoms ranging in severity. These are the most common signs that treatment may be necessary according to the JSC:5
- Excessive daytime sleepiness is the most common and obvious symptom of narcolepsy. It’s characterised by excessive sleepiness, regardless of how much sleep the person had that night. The overwhelming urge to sleep can come on suddenly, making it difficult to concentrate.
- Cataplexy is a symptom for those who have narcolepsy with cataplexy. This causes weakness and an involuntary loss of muscle control. It’s typically triggered by intense emotions such as laughter, fear, stress, or excitement.
- Sleep paralysis is the temporary inability to move while falling asleep or waking. It feels like cataplexy, but only occurs at the edges of the sleep cycle.
- Hallucinations are vivid and sometimes frightening that may be experienced with sleep paralysis. They usually occur while falling asleep or waking up.
- Fragmented sleep is a possible symptom, making it difficult to stay asleep throughout the night.5