Narcolepsy: Causes, Symptoms & Treatment

Narcolepsy is a disease belonging to the group of sleep addictions, characterized by sleep attacks and cataplexies. Although there are several ways to control the disease, it still has no cure.

What is narcolepsy?

Narcolepsy is a neurological disorder that is associated with severe daytime sleepiness as well as uncontrollable sleep attacks. The sudden strong urge to sleep occurs mainly during stress or in situations of great emotionality, such as joy. The excessive urge to sleep cannot be counteracted by increased periods of rest or longer periods of sleep. Narcolepsy, also called sleeping sickness, is a rare disease and belongs to the group of hypersomnias. Narcolepsy means an enormous psychological burden not only for the affected person, but also for relatives and friends. After all, the environment must be constantly on guard and, if necessary, catch the affected person so that he does not hurt himself if he suddenly collapses. The typical and sudden collapse of the affected person, cataplexy, is a main symptom of narcolepsy.

Causes

Although the causes of its occurrence are still relatively unknown, it is now believed to be an autoimmune disease. It is thought that the immune system of affected individuals destroys the cells in the brain that produce the neuropeptide hormone orexin. Orexin plays a crucial role in controlling the wake-sleep rhythm. In addition, many patients with narcolepsy have a defect in a T-cell receptor, making it more difficult to fight off infections. Scientists agree that narcolepsy is not a mental illness, so it is not triggered by exceptional mental states or psychiatric illnesses. In some cases, narcolepsy runs in families, but this is not always the case, which is why genetic components are likely to play only a small role in the development of this disease.

Symptoms, complaints, and signs

Depending on the cause present, narcolepsy shows different symptoms. Some of the complaints are considered typical and occur in all forms of the disease. The main symptom is the excessive need for sleep, which patients cannot resist. It is particularly triggered by dim lighting and in darkened rooms, such as at the cinema or during lectures. Monotonous or boring situations also cause the sleepiness. However, affected persons not only become extremely tired, they fall asleep. This can happen during a conversation or a meal, at work in the office, but also on a car ride. The persons are not able to prevent falling asleep. Sometimes, in addition, there is a sudden slackening of the muscles, which is called cataplexy. In this case, patients remain awake, but slump uncontrollably, as in fainting. It is possible to wake them, but they usually fall back asleep immediately. The onset of drowsiness usually manifests itself in advance in a glazed, absent look, speech becomes slurred, and the person appears drunk. Other specific symptoms that occur, depending on the cause, include disturbed night sleep, paralysis during sleep, hallucinations, headaches, depression, memory problems, and a decreased ability to concentrate. Blurred vision, irritability, pauses in breathing and loud snoring during sleep are also possible

Diagnosis and course

When making the diagnosis, the attending physician first takes a detailed medical history. In doing so, he pays particular attention to the patient’s sleeping habits. The physician also determines whether the patient suffers from the characteristic symptoms of narcolepsy. In addition to sudden sleep attacks, this also includes a loss of muscle tone, which actually only occurs during deep sleep. If the symptoms determined by the medical history confirm the suspicion of narcolepsy, the general practitioner or pediatrician orders a comprehensive physical examination to find possible other causes for the symptoms. If the physical examination is inconclusive, the physician refers the patient to a doctor who specializes in sleep medicine. Subsequently, the patient is usually observed in a sleep laboratory. The measurements taken there are used to assess the severity of the narcolepsy.Basically, the course is good if patients learn to manage their disease and take the right medications.

Complications

Due to narcolepsy, those affected primarily suffer from very severe sleep complaints. This results in pronounced fatigue, which already occurs on the first day and thus significantly reduces the quality of life. Those affected feel tired and listless and also suffer from a significantly reduced ability to cope with stress. The sleep rhythm itself is also abnormal. In some cases, those affected suffer brief muscle paralysis or disorders of consciousness, which can also make everyday life more difficult. During sleep itself, it is not uncommon for paralysis to occur, which is associated with anxiety. Hallucinations can also occur as a result of narcolepsy. Furthermore, this disease has a very negative effect on the relationship with one’s partner, so that tensions may arise. The treatment of narcolepsy can be done with the help of medication. Thereby it can possibly come to a dependence. However, psychological therapy is also necessary to treat this disease. However, it cannot be guaranteed whether this will be successful. Narcolepsy does not usually have a negative effect on the life expectancy of the affected person.

When should you see a doctor?

Those affected by narcolepsy should find a family doctor nearby who already has expertise in this area. The health insurance companies usually provide information on this, and the medical association also has useful information on the specialties of individual doctors. For patients, it is important and sensible to keep the distances short. It is also advisable to have an accompanying person with you at all times. If there is no one in your environment who can accompany you, it is also possible to get support from a self-help association. These usually know advice also in difficult life situations, always have uplifting words for the patient and know established doctors who are experienced in the field of narcolepsy. To diagnose the disease and clarify its severity, the family doctor usually first refers the patient to a sleep laboratory. There, among other things, the brain waves are measured and further, detailed examinations take place. A visit to a neurologist is then usually recommended to rule out psychiatric and neurological diseases as the cause. Little is known about narcolepsy yet and diagnosis takes quite a long time, in some cases even several years.

Treatment and therapy

Narcolepsy is not curable to date. Nevertheless, there are medications with which the sleep attacks can be better controlled or even partially prevented. The medication of narcolepsy is complicated, because there is no drug against narcolepsy per se, but the different symptoms are treated with appropriate drugs. Even if good partial successes can be achieved with individually tailored drug therapy, it is not possible to get narcolepsy under control with this alone. In most cases, patients are recommended to undergo behavioral therapy. In this way they can learn to cope better with their disease and develop strategies to lead a normal life despite their narcolepsy. To avoid injury, it is important for sufferers to be aware of the dangers and develop good body awareness so that, for example, they only turn on the stove when they feel they will not fall asleep.

Outlook and prognosis

The prognosis for narcolepsy depends on the person’s ability to cope with the condition. Neither does the condition cure on its own nor is it causally treatable. Accordingly, the problem persists throughout life and can only be alleviated by medication. It is possible for many people with narcolepsy to lead a largely intact life. However, there are often occupational and social restrictions that stand in the way of personal development. This can sometimes have a very strong impact on the quality of life and reduces it. In some cases, sufferers develop depression or social phobias. Both are due to actual and feared limitations as a result of narcolepsy. Furthermore, financial losses often lead to financially difficult situations for those affected. This is especially true if the narcolepsy is not diagnosed and treated.An adapted sleep rhythm with regular rest breaks and the avoidance of triggering situations can improve the quality of life. Affected persons can thus spend most of the day awake and unrestricted. Due to the many accompanying symptoms, including possible accidents, the mortality rate is increased by a factor of about 1.5. Accordingly, narcolepsy often causes death directly or indirectly. This risk persists throughout life, but can be reduced thanks to medication.

Prevention

Because the exact causes of this condition are unknown, there are no useful measures that can be used prophylactically. People who already have narcolepsy can only prevent accidents. For example, they should not swim or drive, and they should inform their environment about their disease.

Aftercare

The treatment and aftercare of patients suffering from narcolepsy merge smoothly. This disease is generally not curable, but it can be treated. For this purpose, the affected person must take medication for the rest of his or her life. In most cases, these are drugs that belong to the group of narcotics. Professional support from a specialized physician is therefore absolutely necessary. With regard to proper medical care, the patient can contact the German Narcolepsy Society (DNG). Both the disease and the possible side effects of some medications can reduce the patient’s quality of life. The affected person may develop depression. Participation in public life is made more difficult by the possibility of falling asleep at any time. Regular meetings in the form of self-help groups as well as professional psychological treatment can ease the patient’s suffering. The social environment such as family and friends is also very important for the patient. Their support and understanding make it easier for the affected person to deal with his or her illness. Patients must learn to cope with the disease. With increasing experience in dealing with the disease, they can better cope with everyday life. However, practicing a profession is usually no longer possible.

Here’s what you can do yourself

To improve health, the patient of narcolepsy can take various self-help measures that are not based on medication. Sleep hygiene should be optimized. The choice of mattress, ambient temperature, bedding and possible light influences should be adapted to the needs of the organism. It should be possible to exclude possible noises caused by external influences or by the sudden ringing of a telephone. Restful and sufficient sleep can significantly contribute to the alleviation of symptoms. Consumption of substances containing caffeine should be refrained from several hours from the night’s rest. The daily routine should have a regularity in which rest periods occur in the same constant rhythms over a longer period of time. Sleep and wake rhythms can be documented in sleep logs. Based on the notes, improvements can be worked out and own strategies can be developed. Adequate breaks and naps should be taken in everyday life. The affected person must learn when his organism needs sleep and follow these impulses. Stress and hectic activity should be avoided. To avoid a drop in well-being or to prevent a lack of exercise, regular sporting activities should take place. Tips for improved behavior to cope with everyday life should be considered and implemented. An exchange of the affected person in self-help groups can also be helpful and beneficial.