Narcolepsy: What Is It, Its Symptoms, Causes, and How to Manage It?

Today, many health conditions are emerging related to people's lifestyles and sleep patterns.

Some of these conditions are influenced by genetic factors, while others arise solely due to daily routines. Although the exact cause of narcolepsy is not fully understood, it is believed to be related to both genetic factors and lifestyle. In this article, we provide detailed information about narcolepsy, a condition whose exact cause is still not determined.

What is Narcolepsy?

Narcolepsy is a disease that affects the nervous system, and people with narcolepsy experience abnormal sleep patterns during the day. Studies have shown that this disease is chronic and affects approximately 0.5-2% of the population. The onset of the disease typically occurs between the ages of 10 and 25. However, due to the difficulty in diagnosing the disease, it may be diagnosed later, or there may be cases of misdiagnosis. One of the most common misconceptions about narcolepsy is that it causes intense sleep at night, but this is incorrect. While narcolepsy causes severe drowsiness and sleep attacks during the day, it leads to fragmented and shallow sleep at night.

In most cases, individuals may experience cataplexy, which is an unexpected and temporary loss of muscle control. This loss of control, particularly in children, may be mistaken for other types of seizures. Narcolepsy itself is not life-threatening, but the sleep attacks and drowsiness experienced during the day can lead to accidents, injuries, and even life-threatening situations. Additionally, individuals with narcolepsy may struggle to perform their jobs, face challenges in daily relationships, and experience academic difficulties.

What are the Symptoms of Narcolepsy?

The symptoms of narcolepsy can vary from person to person. In some cases, symptoms are more pronounced, while in others, they may be milder and more manageable. Symptoms can develop gradually over the years, or appear suddenly within a few weeks. Although narcolepsy is a chronic condition, some symptoms may lessen as a person ages. To diagnose narcolepsy, an examination by a sleep disorder specialist is required. The most common symptom is excessive daytime sleepiness, which is the first and most frequent sign of the condition. This affects daily life significantly and decreases quality of life. Feeling sleepy throughout the day and trying to stay awake can lead to concentration loss at work or school.

People with narcolepsy may be perceived as lazy or rude by others. However, the sudden sleep attacks can negatively affect their mood and lead to a negative outward expression. Sudden sleep attacks are another symptom, with an unpredictable onset and duration. While some patients experience short naps, others may experience prolonged sleep. If the disease is not well controlled, multiple sleep attacks may occur during the day. Other known symptoms of the disease include:

  • Drooping of the jaw during sleep attacks
  • Loss of head control
  • Loss of leg control
  • Speech difficulties
  • Double vision or impaired vision
  • Inability to focus on tasks
  • Sleep paralysis that occurs during sleep attacks

What Causes Narcolepsy?

There is no definitive answer to what causes narcolepsy. Research has not provided sufficient data on the exact cause of the disease. People with type 1 narcolepsy have low levels of the chemical hypocretin. Hypocretin is an important neurochemical in the human brain that helps regulate wakefulness and REM sleep. Hypocretin levels are particularly low in patients experiencing cataplexy. The exact cause of the loss of hypocretin-producing cells in the brain is unknown, but it is believed to be related to autoimmune reactions. Genetic factors are also thought to contribute to narcolepsy. However, the likelihood of narcolepsy being passed from parent to child is about 1%. Studies have also shown that exposure to the H1N1 virus vaccine, which was widely used in Europe during the swine flu epidemic, could potentially trigger narcolepsy, although the exact cause is still unclear.

How is Narcolepsy Diagnosed?

Narcolepsy can be initially suspected during an examination due to excessive daytime sleepiness and sudden muscle tone loss (cataplexy). After the preliminary diagnosis, a referral to a sleep specialist is made for further evaluation and a definitive diagnosis. To confirm the diagnosis of narcolepsy, a detailed sleep analysis is conducted by sleep experts, which involves monitoring the patient overnight. The doctor will ask the patient questions to assess their sleep history and identify any sleep problems experienced during the day. The doctor will evaluate whether these problems are related to narcolepsy. The patient may be asked to keep a sleep diary for one or several weeks to track their sleep issues, helping the doctor analyze the relationship between wakefulness and sleep patterns. During the weeks of diary keeping, the patient is asked to wear a device called an actigraph. This device looks like a wristwatch and measures activity and rest periods, providing insights into the patient’s sleep patterns.

Polysomnography, a test that can be useful for diagnosis, involves placing electrodes on the scalp to measure sleep signals. The test monitors brain, heart, muscle, and eye movements. It also tracks the patient's breathing patterns. The final test used is the Multiple Sleep Latency Test (MSLT), which measures how long it takes the patient to fall asleep. During the test, the patient is asked to sleep a couple of times at intervals throughout the day. This helps determine how long it takes for the patient to fall asleep. Based on the results of these tests, narcolepsy can be diagnosed.

Symptoms that Occur Along with Narcolepsy

The most prominent symptom associated with narcolepsy is daytime sleepiness. This sleepiness presents itself in the form of sleep attacks, which significantly reduce the patient’s quality of life. It leads to increased stress and lack of attention in their work and daily activities. Considering these factors, it is important to manage the disease. Otherwise, it is likely to lead to accidents and unwanted situations during the day.

How Does Narcolepsy Resolve?

There is currently no permanent cure for narcolepsy. Sodium oxybate is one of the medications used to manage sleepiness and prevent sleep attacks in narcolepsy treatment. Additionally, antidepressant medications help patients manage narcolepsy symptoms. However, in some patients, these medications may have adverse effects, such as changes in blood pressure and heart rhythm. Therefore, it is dangerous to use medications not prescribed by a doctor. During the course of treatment, medication doses may be adjusted.

In addition to medications, people with narcolepsy need to learn to live with the condition. Organizing their daily lives accordingly makes it easier for patients to cope. Taking short naps of about 20 minutes during the day helps prevent sleep attacks. Exercising 4-5 hours before going to bed improves sleep quality and helps the patient sleep more soundly.

Avoiding caffeine, alcohol, and smoking in the 4-5 hours before sleep is important. Ideally, staying away from alcohol and cigarettes would be even more beneficial for the patient. Maintaining a consistent sleep schedule by going to bed and waking up at the same time every day is crucial. Explaining the condition to those around them and seeking support can make the patient’s life easier. This way, narcolepsy patients can lead more organized lives and minimize the impact of the disease on them.

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Prof. Yaşar Kütükçü

Gebze Ataşehir

Neurology Department

Prof. Nihal Işık

Gebze Ataşehir

Neurology Department

Prof. Yaşar Kütükçü

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