Narcolepsy

What is narcolepsy?

What is narcolepsy?

In the following Mister Sandman guide for mattresses , we explain everything about the topic of narcolepsy, the sleep disorder. Narcolepsy, commonly referred to as "sleep disorder" in layman's terms, is a rare condition in which the natural sleep-wake rhythm is disturbed. Characteristic symptoms of the sleep disorder include severe daytime sleepiness and spontaneous sleep attacks in everyday situations. Narcolepsy patients may fall asleep even in situations that healthy people would find incomprehensible, such as during a conversation or while eating. Narcolepsy is a form of hypersomnia and has an organic origin. More specifically, narcolepsy is a neurological disorder. Therefore, those affected cannot do anything about their sudden sleep attacks. This often appears strange to society and family, and narcolepsy patients are viewed as sluggish, lazy, and uninterested. This treatment often results in people suffering from narcolepsy withdrawing socially and being significantly limited in their daily lives.

Forms of Narcolepsy

Narcolepsy, or the sleep disease, is currently incurable according to the latest research. Despite often significant limitations and burdens in the daily lives of patients, narcolepsy does not affect life expectancy. With appropriate treatment, people suffering from narcolepsy can lead a relatively normal life. The symptoms vary among all patients and are expressed to different degrees. In medicine, three forms of narcolepsy are distinguished:

• Narcolepsy with cataplexy (classic narcolepsy)
• Narcolepsy without cataplexy (monosymptomatic narcolepsy)
• Secondary Narcolepsy (due to injuries of the hypothalamus or brainstem)

Narcolepsy - Symptoms

Characteristic of narcolepsy are several symptoms. In medicine, this is referred to as a symptom complex or syndrome. Many individuals affected by narcolepsy experience several of these characteristic symptoms, but very rarely all symptoms. The manifestation of the symptoms can also vary greatly. The most important symptoms of narcolepsy are: 

• Excessive daytime sleepiness in narcolepsy
• cataplexy in narcolepsy
• disturbed sleep rhythm in narcolepsy
• sleep paralysis in narcolepsy
• hypnagogic (sleep-related) hallucinations in narcolepsy
• automatic behavior in narcolepsy

Excessive daytime sleepiness

A strongly pronounced and overwhelming daytime sleepiness is the most common and often the first symptom of narcolepsy, which about 95% of all affected individuals have. The fatigue is often so great that those affected briefly fall asleep. The naps due to daytime sleepiness usually last only a few minutes but can occur in unusual situations. Those affected can also do nothing against the sleepiness. In most cases, the sleepiness leads to falling asleep in situations where even healthy people lose concentration, that is, in very monotonous situations. Narcoleptics can also unintentionally fall asleep in completely normal situations during the day. After these sleep attacks, narcolepsy patients are usually rested and awake for a short time, but the fatigue sets in very quickly again. If no other typical symptoms of narcolepsy occur alongside daytime sleepiness, other factors may also be the cause. A disturbed sleep-wake rhythm due to other sleep disorders or an increased need for sleep due to various illnesses can cause daytime fatigue.

Cataplexy

Cataplexy occurs as a symptom in about 90% of all narcolepsy patients. Cataplexy allows for a clear diagnosis of narcolepsy. Cataplexy refers to a loss of control over muscles, triggered by sudden emotions, that is, emotions. The manifestation of cataplexy can vary among different patients. Almost always, however, the facial muscles are affected by cataplexy. Often, the knees also temporarily fail during a cataplexy episode. Affected narcoleptics may briefly experience staggering or even falling. While cataplexy does carry an increased risk of injury for narcolepsy patients, it is not life-threatening, as muscle groups involved in breathing or digestion are never affected. Since a cataplexy episode can often be uncomfortable or embarrassing for those affected in public, narcolepsy patients often try to avoid strong emotions by isolating themselves socially. Triggers for cataplexy include, among others:

• Joy ("laughing fit")
• Shame
• Enthusiasm
• Anger
• Excitement
• Shock
• Stress

Disrupted sleep rhythm

In addition to increased daytime sleepiness, most narcolepsy patients suffer from disturbed nighttime sleep. This is because the sleep-wake rhythm in sleep disorders is irregular and abnormal. Thus, the REM and nREM phases often shift in narcoleptics. Those suffering from narcolepsy also often wake up multiple times per night and cannot fall back asleep. This disturbed, non-restorative nighttime sleep further contributes to daytime fatigue. A suitable mattress can help support this. You can find the right mattress, for example, with the appropriate mattress finder from Mister Sandman, such as our:

• Liara latex mattress
• Serena Gel Mattress
• Anea Cold Foam Mattress

You can find these mattresses in our online shop with free shipping, 30 days trial sleep, and the highest quality. 

Sleep paralysis

Sleep paralysis, also known as sleep paralysis, is a natural function of the body. In healthy individuals, sleep paralysis occurs during the REM phases of sleep and prevents dream content from being converted into muscle movements. Narcolepsy disrupts the natural sleep-wake rhythm and blurs the boundaries between sleeping and being awake. This means that in a person with narcolepsy, sleep paralysis can suddenly occur even though they are awake and fully conscious. This symptom is particularly common just before falling asleep or after waking up, especially when lying on the back. During these phases, which often last only a few minutes, the affected person loses complete control over their muscles and is unable to move. In contrast to seizures in epilepsy, narcoleptics are fully conscious during these attacks and can remember everything afterwards.

Hypnagogic hallucinations

Hypnagogic, or sleep-related hallucinations, occur in narcolepsy patients primarily before falling asleep or after waking up. Like sleep paralysis, it is also attributed to a disturbed sleep-wake rhythm, which blurs the boundaries between sleep and wakefulness. However, the hallucinations are not tied to nighttime sleep but can also occur during the day, in connection with increased sleepiness or cataplexy. The hallucinations are usually visual and can seem very real. However, those affected by narcolepsy are able to recognize these as hallucinations and thus as not real after the hallucinations.

Automatic behavior

Automatic behavior occurs in about 20 percent of those affected by narcolepsy and forms with sleep-related hallucinations the nonspecific symptoms of narcolepsy. Automatic behavior means that those affected continue certain activities stereotypically, even though they slip into a sleep-like state. The result of these activities is often faulty, reactions to external influences are delayed. Automatic behavior in narcolepsy is favored by excessive sleepiness or the lack of opportunity to sleep. Automatic behavior significantly increases the risk of accidents for narcoleptics.

Narcolepsy - Causes

Narcolepsy is a idiopathic hypersomnia. This means that the causes and triggers of narcolepsy are not known. Although there are many hypotheses that are considered very likely, the causes of narcolepsy have not yet been fully researched. According to the current state of research, it is assumed that a functional disorder in the brain, specifically in the areas that control the wake-sleep rhythm, is responsible for narcolepsy. What exactly causes this disorder is unclear. It is believed to be a combination of genetic predisposition and various environmental influences. In many narcolepsy patients with a positive diagnosis, no or only a very low concentration of the neuropeptide hormone hypocretin can be detected in the brain. In the majority of narcoleptics, a specific genetic test also yields a positive result. Almost 98% of narcolepsy patients possess the specific HLA DRB1*1501 and HLA DQB1*0602. HLA stands for "Human Leukocyte Antigen System" (HLA system). However, this test also yields a positive result in a significant portion of healthy individuals and is not sufficient for the diagnosis of narcolepsy.

Narcolepsy - Risk Factors

Various environmental influences are suspected to be (co-)triggers of narcolepsy. There are numerous cases where narcolepsy was presumably triggered by the vaccination against swine flu. The likely cause is that the brain confuses the vaccine with the hormone hypocretin. A certain predisposition is probably necessary for this.

Narcolepsy - Diagnostics

Bei Verdacht auf Narkolepsie sollte unbedingt ein Arzt aufgesucht werden. Ein erfahrener Arzt ist in der Regel in der Lage die Krankheit relativ einfach festzustellen. Die Diagnose ist vor allem dann einfach wenn neben der typischen Tagesschläfrigkeit auch Kataplexien die Symptome bestimmen. Leidet der Patient nicht unter Kataplexie, wird die Krankheit häufig als Epilepsie oder Depression fehldiagnostiziert, oder schlimmer noch - als Faulheit diffamiert. Betroffene schämen sich oft auch für ihre Symptome, vor allem für die Schläfrigkeit und ständige Müdigkeit. Dies bewirkt, dass die Diagnose der Schlafkrankheit erst Jahre später erfolgt. In unklaren Fällen kann aber ein Schlaflabor oder ein erfahrener Neurologe meist eine positive Diagnose auf Narkolepsie stellen.

Narcolepsy - Frequency and Distribution

In Germany , approximately 40,000 people suffer from narcolepsy, with a high dark figure assumed. About 4,000 Germans have a positive diagnosis of narcolepsy. Thus, narcolepsy is classified as one of the rare diseases, making it less known. It happens that even doctors, when they are not familiar with the disease, misclassify and treat its symptoms. Regarding gender distribution, there are different statements. It is often said that men are slightly more affected than women. The average age for the onset of the first symptoms of narcolepsy is 25 years. Symptoms tend to first appear during puberty (15 years) or at the age of 35.

Narcolepsy - Treatment and Therapy

According to the current state of research, narcolepsy is not curable and lasts a lifetime after the onset of the first symptoms. However, the mortality is not affected by narcolepsy; narcoleptics may only have a slightly increased risk of accidents and injuries due to sleep attacks and cataplexy attacks. However, the sleep disorder is relatively well treatable through various methods. The therapy includes both medication therapy and non-medication therapy. With appropriate treatment, symptoms can be improved, and affected individuals can largely live without complaints.

Narcolepsy - medication treatment

Depending on the severity and frequency of symptoms, therapy for narcolepsy without medication is not sufficient. The sleepiness and fatigue during the day can be well treated with various stimulants. For cataplexy and hallucinations, especially antidepressants are used. A doctor can provide detailed information about the options.

Narcolepsy - non-medication treatment

Many narcolepsy patients primarily suffer from the stigma of society, as it often does not understand the illness and perceives it as strange. Therefore, many affected individuals often completely withdraw from society and avoid even family and friends. Since such behavior is usually a path to depression, it is important for narcolepsy patients to learn to live with their condition. There are some recommended so-called coping strategies. These are primarily intended to help better cope with the illness of narcolepsy and to accept it. Among the most important non-medication behavioral therapeutic measures are:

• Sleep Hygiene: This includes all measures that promote healthy nighttime sleep.
• Act in Time: Narcoleptics are often powerless against sleep attacks. However, those who know their illness and interpret the signs correctly can take a break in time or, for example, temporarily alleviate the situation with a cup of coffee.
• Take Naps: Those who have enough information about their illness can usually assess well in which situations drowsiness becomes overwhelming. Thus, sleep breaks can be consciously integrated into the day.
• Exercise Against Monotony: Monotony robs even healthy people of their concentration. For narcoleptics, it often becomes unbearable, leading to sleep attacks. By consciously breaking monotony, one can create relief. Exercise is a good way to do this.
• Develop Your Own Strategy: Narcoleptics should gather as much information as possible about their sleep disorder and its symptoms. This way, individual strategies can be specifically developed on how to deal with narcolepsy in certain situations.
• Targeted Behavioral Change: This can include a targeted structuring of the day by incorporating sleep breaks or a conscious diet in case of a tendency to overweight. The social environment and family should also be informed about narcolepsy.
• Support Group Exchange: The exchange with other affected individuals often makes it easier for narcolepsy patients to cope with their illness. One can share various coping strategies and also vent their own frustration to regain new courage. The German Narcolepsy Society e.V. (dng) based in Stuttgart, for example, offers many information and dates for support groups.