Narcolepsy: Information & Narcolepsy Specialists

Narcolepsy is characterized by a massive increase in daytime sleepiness, known in medical terms as hypersomnia. Those affected feel as though they haven’t slept enough or haven’t slept well. They are often exhausted and tired.

The sleepiness is not constantly present but comes in sudden, overwhelming episodes. Within seconds, it can cause those affected to feel an irresistible urge to sleep and, in some cases, to fall asleep.

The amount of sleep obtained the previous night has no influence on the occurrence of these episodes.

Patients with narcolepsy experience significant psychological distress: they feel misunderstood by those around them and live in constant fear of an episode.

Another well-known symptom is cataplexy. During an episode, the postural muscles give way, causing the person to lose control of a specific body part—such as the head or legs—and collapse. Where cataplexy occurs varies from person to person. Those affected remain conscious during an episode of cataplexy.

People with narcolepsy also often complain that their sleep patterns are disrupted at night. Waking up repeatedly and spending long periods awake at night are characteristic of narcolepsy.

Other symptoms:

• Sleep-related hallucinations: Hallucinations while falling asleep or waking up, such as vague figures at the edge of the bed or in the room
• Automatic actions: People with narcolepsy perform actions without consciously controlling or experiencing them; usually in connection with acute sleepiness
• Paralysis before or after sleep: People with narcolepsy are unable to move during moments before or after sleep

The symptoms listed may accompany narcolepsy. However, they usually do not occur in their entirety or all at once.

Since narcolepsy impairs quality of life, many patients develop mental health issues. Doctors must not confuse these with the underlying clinical picture. Therefore, the patient and doctor must communicate very precisely when examining and describing the clinical picture.

Patients must first inform their doctor of their medical history and describe their symptoms precisely. The most common symptoms of narcolepsy are so specific that even primary care physicians should be able to make a preliminary diagnosis of narcolepsy.

To confirm the suspicion, a referral to a specialist is usually recommended. The somnologist (loosely translated: sleep doctor) has a range of tests available to diagnose the patient’s condition.

One initial test is the ESS (Epworth Sleepiness Scale), in which patients rate their individual daytime sleepiness. To rule out other possible causes of the symptoms, doctors often perform

• neurological,
• hematological,
• psychiatric, or
• internal medicine

routine examinations. To confirm the diagnosis beyond a doubt, monitoring in a sleep laboratory may be performed. In most cases, however, the clinical picture can be clearly identified beforehand.

The causes of narcolepsy remain largely unclear. The condition likely arises from physiological or genetic factors interacting with external environmental factors.

Some experts suggest that narcolepsy is an autoimmune disorder. For example, narcolepsy patients are found to have reduced hypocretin levels in their cerebrospinal fluid. Cerebrospinal fluid is the term used to describe the fluid surrounding the brain and spinal cord.

Narcolepsy is a disorder of neurological functions. The brain is unable to regulate functions such as

• sleep,
• wakefulness, or
• concentration

smoothly and normally. This fundamental disruption leads to the characteristic symptoms of narcolepsy.

There is no cure for narcolepsy. However, treatment helps to reduce symptoms and significantly improve quality of life.

Medication can help normalize the sleep cycle. This makes it possible to minimize episodes of wakefulness, sleep paralysis, and hallucinations at night. Patients are often able to sleep through the night and, over time, feel more energetic and rested.

Non-medication-based therapy primarily involves lifestyle changes. These include

• engaging in physical activity to combat constant anxiety,
• developing an inner sense of impending crisis periods, and
• promoting healthy sleep (e.g., by taking naps, etc.).

Patients suffering from narcolepsy feel severely restricted in their daily lives. The condition has no physiological impact on life expectancy.

Using various therapeutic techniques, it is possible to significantly alleviate the symptoms of the condition. People with narcolepsy are not alone. With the right treatment, healthcare professionals can greatly improve the quality of life for those affected.