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Imagine not being able to control when and where you fall sleep. One moment, you’re sitting at your desk working or talking to someone and the next, you wake up with your head on the desk. You’ve just had a nap attack. In medical terms, this is known as narcolepsy.
According to Professor Ana Checa-Rosa, a sleep expert, narcolepsy is a sleep disorder that can significantly impact daily life by causing sudden nap attacks, making individuals fall asleep at any time, in any situation.
“Narcolepsy is when someone suddenly falls asleep, often with a sudden loss of muscle tone. It can be really frustrating and sometimes dangerous, especially for adults who might fall asleep while driving,” explains Prof Checa-Rosa.
According to the National Organisation for Rare Disorders (NORD), narcolepsy affects approximately 1 in 2,000 people worldwide. However, this condition often takes years to be diagnosed and is believed to remain undiagnosed or misdiagnosed in many cases. Its onset can occur anytime between early childhood and 50 years of age.
NORD classifies narcolepsy as an autoimmune disorder, where the body’s immune system mistakenly attacks healthy tissue or cells. In narcolepsy, the immune system destroys brain cells that produce a peptide called hypocretin. “We don’t know exactly why narcolepsy happens, but it has been linked to certain genes that affect parts of the brain involved in sleep regulation,” says Prof Checa-Rosa.
Hypocretin is a brain chemical that controls when you are awake and when you are in rapid eye movement (REM) sleep. People with narcolepsy often have fewer brain cells that produce hypocretin, but researchers do not fully understand why.
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The most noticeable symptoms of narcolepsy include excessive daytime sleepiness, cataplexy (sudden loss of muscle tone, often triggered by strong emotions), sleep paralysis (inability to move or speak while falling asleep) and hallucinations (vivid dreams or seeing things that aren’t there while falling asleep or waking up).
Excessive daytime sleepiness (EDS) is usually the first sign of narcolepsy. People with narcolepsy often feel very sleepy, tired and low on energy. They may have a strong need to sleep and can’t stop themselves from dozing off. This can happen every day, but its severity varies from day to day and even throughout the day. These sleep episodes can occur at any time, even while walking, talking, eating or driving.
As a result, narcolepsy can significantly disrupt a person’s life. Those affected may fall asleep for brief periods ranging from a few seconds to several minutes. A distinctive feature of narcolepsy is that individuals often feel much more awake and alert after a short nap.
Narcolepsy can also disrupt nighttime sleeping patterns. Affected individuals may frequently awaken during the night and stay awake for long periods. Even though their sleep patterns are disrupted, they usually get a normal amount of sleep because they take short naps both day and night. Managing narcolepsy requires a comprehensive approach.
“It’s not an easy condition to treat,” notes Prof Checa-Rosa. Treatment often involves a combination of medication and lifestyle adjustments. For medication, stimulants can help stay awake during the day, while antidepressants can help manage cataplexy.
Lifestyle changes can also manage the condition. Taking short naps during the day, maintaining a regular sleep schedule, and avoiding caffeine or alcohol before bedtime can improve symptoms.
“Narcolepsy needs to be managed by a team of healthcare professionals,” emphasises Prof Checa-Rosa. This team can include neurologists, sleep specialists and psychologists. Together, they can develop a personalized treatment plan to help manage symptoms and improve the quality of life.
Living with narcolepsy can be challenging, but with proper management and support, individuals can lead fulfilling lives. Experts advise that if you or someone you know is experiencing symptoms of narcolepsy, it’s important to seek medical advice and explore treatment options.
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