Narcolepsy exposed – Symptoms, diagnosis, and treatment strategies

Roughly 200,000 people suffer from narcolepsy in the United States, but only around 25% of people with the disorder get diagnosed and receive treatment.

Narcolepsy affects the brain’s ability to regulate sleep-wake cycles. It can lead to excessive daytime sleepiness and, in some cases, sudden episodes of muscle weakness, hallucinations, and sleep paralysis.

Narcolepsy takes a toll on patients’ lives. It makes it more difficult to participate in social activities and perform at school or work. But despite its impact on daily life, narcolepsy has no cure and it is often misunderstood. 

What is narcolepsy?

Narcolepsy is a chronic neurological disorder. It’s caused by a combination of genetic, environmental, and immunological factors that lead to a deficiency in the neurotransmitter hypocretin (also known as orexin). Hypocretin is produced by neurons in the hypothalamus. It helps regulate wakefulness and the rapid eye movement (REM) sleep phase. 

Signs and symptoms of narcolepsy

Narcolepsy is characterized by the following symptoms:

• Excessive daytime sleepiness
• Sudden loss of muscle tone (cataplexy)
• Brief episodes of paralysis when falling asleep or waking up (sleep paralysis)
• Vivid dreams or hallucinations during sleep

Excessive daytime sleepiness (EDS): People with narcolepsy often feel extremely sleepy during the day, regardless of how much sleep they get at night. EDS leads to difficulty staying awake and alert, especially during monotonous or sedentary activities.

Cataplexy: Cataplexy is a sudden loss of muscle tone triggered by strong emotions, such as laughter, surprise, or anger. It can range from mild muscle weakness to complete collapse and resembles the muscle paralysis experienced during REM sleep.

Sleep paralysis: Sleep paralysis is a temporary inability to move or speak while falling asleep or waking up. It can be accompanied by hallucinations or a sense of suffocation and usually lasts for a few seconds to a few minutes.

Hallucinations: Vivid dream-like experiences that occur while falling asleep (hypnagogic hallucinations) or waking up (hypnopompic hallucinations) are common in narcolepsy. These hallucinations can be frightening or disorienting.

How is narcolepsy diagnosed?

Diagnosing narcolepsy involves a thorough evaluation of symptoms, medical history, and sleep patterns. A sleep specialist may recommend a sleep study (polysomnography) along with a multiple sleep latency test (MSLT) to assess sleep patterns and daytime sleepiness. Additionally, healthcare providers may use blood tests and genetic testing to rule out other conditions with similar symptoms.

Treatment options for narcolepsy

Currently, no cure exists for narcolepsy. However, several treatment options can help manage symptoms and improve patients’ quality of life.

Medications: Doctors often prescribe stimulants, such as modafinil and armodafinil, to reduce daytime sleepiness. These medications interact with specific neurotransmitters in the brain to promote wakefulness. Doctors may also prescribe sodium oxybate to improve nighttime sleep and reduce cataplexy. Narcolepsy medications are often used in combination with other behavioral strategies to manage symptoms more effectively.

Strategic napping: Scheduled short naps, often referred to as “strategic napping,” can help manage excessive daytime sleepiness in people with narcolepsy. These naps are strategically planned throughout the day to help combat the sudden onset of sleepiness and can improve alertness and cognitive function.

Lifestyle changes: Establishing a regular sleep schedule, maintaining good sleep hygiene, and avoiding alcohol and caffeine close to bedtime all help regulate sleep patterns. Go to bed at the same time each night and wake up at the same time each morning. Take time to wind down before getting into bed by performing relaxing activities, such as…

• Reading a book
• Listening to soothing music
• Taking a warm bath or shower
• Meditating or practicing deep breathing exercises

You should also dim the lights in your home around an hour before bedtime. This signals to your mind and body that the time to sleep is approaching.

Supportive therapies: Counseling and support groups can help people with narcolepsy better manage their condition. These resources provide a supportive environment where people can share their experiences, learn from others facing similar challenges, and gain valuable coping strategies.

Counseling also helps people address the emotional or psychological impact of living with narcolepsy, manage stress, and maintain a positive outlook. Support groups offer a sense of community and understanding that can be incredibly valuable for narcolepsy patients.

If you or someone you know is experiencing symptoms of narcolepsy, contact a healthcare provider for a medical evaluation and treatment plan to improve sleep quality and daily life. 

Dr. Meghna Dassani has practiced dentistry for over two decades and is passionate about the role dentists play in whole-body health. You can learn more at her website: MeghnaDassani.com.