Narcolepsy is a sleep disorder that is characterized by sleep attacks and cataplexy. Although there are various ways to control the disease, to date there is no cure.
What is narcolepsy?
Narcolepsy is a neurological disorder associated with severe daytime sleepiness and uncontrollable sleep attacks. See photionary for King-Kopetzky Syndrome 101.
The suddenly occurring strong urge to sleep occurs above all in 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 known as sleeping sickness, is a rare disease and belongs to the group of hypersomnias. Narcolepsy is not only an enormous psychological burden for the person affected, but also for relatives and friends.
After all, the environment must be constantly on guard and, if necessary, catch the person concerned so that he does not hurt himself if he suddenly collapses. The typical and sudden collapse of those affected, the cataplexy, is a main symptom of narcolepsy.
Although the causes of the occurrence of this disease are still relatively unknown, it is now assumed that it is an autoimmune disease.
It is believed that the immune system of those affected destroys the cells in the brain that make the neuropeptide hormone orexin. Orexin plays a crucial role in controlling the sleep-wake cycle. In addition, many patients with narcolepsy have a defect in a T-cell receptor, which makes it difficult to fight off infection.
Scientists agree that narcolepsy is not a mental illness, so it is not caused by mental health emergencies or psychiatric illnesses. In some cases, narcolepsy runs in families, but this is not always the case, so genetic components may play only a small role in the development of the disease.
Symptoms, Ailments & Signs
Narcolepsy has different symptoms depending on the cause. Some of the symptoms 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 triggered in particular by dim lighting and in darkened rooms, such as in the cinema or during lectures. Monotonous or boring situations also cause sleepiness.
Those affected 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. Individuals are unable to prevent falling asleep. Sometimes there is also a sudden relaxation of the muscles, which is referred to as cataplexy.
Although the patients remain awake, they collapse uncontrollably, as in the case of fainting. It’s possible to wake them up, but they usually fall right back asleep. The onset of drowsiness is usually preceded by a glazed, distant look, speech becomes slurred, and the person appears drunk.
Other specific symptoms that occur depending on the cause are disturbed sleep at night, paralysis during sleep, hallucinations, headaches, depression, memory disorders and a reduced ability to concentrate. Blurred vision, irritability, pauses in breathing and loud snoring during sleep are also possible
Diagnosis & History
When making the diagnosis, the doctor treating you first takes a detailed medical history. He pays particular attention to the patient’s sleeping habits. The doctor 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 identified by the medical history confirm narcolepsy suspicion, the general practitioner or pediatrician will order a full physical examination to find other possible causes of the symptoms.
If the physical examination is inconclusive, the doctor will refer 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 narcolepsy. Basically, the course is good if the patients learn to deal with their disease and take the right medication.
Because of narcolepsy, those affected primarily suffer from very severe sleep disorders. This leads to pronounced fatigue, which already occurs on the first day and thus significantly reduces the quality of life. Those affected feel tired and exhausted and continue to suffer from a significantly reduced resilience.
The sleeping rhythm itself is also abnormal. In some cases, those affected briefly suffer from muscle paralysis or disturbances of consciousness, which can also make everyday life more difficult. During sleep itself, paralysis often occurs, which is associated with states of anxiety. Narcolepsy can also cause hallucinations.
Furthermore, this disease has a very negative effect on the relationship with your partner, so that tensions can possibly arise. Narcolepsy can be treated with medication. There may also be a dependency. However, psychological therapy is also necessary to treat this disease. However, there is no guarantee that this will be successful. Narcolepsy does not usually have a negative impact on the life expectancy of the person affected.
When should you go to the doctor?
Those suffering from narcolepsy should find a family doctor nearby who already has specialist knowledge in this area. The health insurance companies usually provide information on this, and the medical association also has useful information on the specialist areas of individual doctors. It is important and sensible for sick people to keep distances short. It is also advisable to have an accompanying person with you at all times. If there is no one from the environment who can accompany you, it is also possible to get support from a self-help association. They usually have advice even in difficult life situations, always have encouraging 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 you to a sleep laboratory. Among other things, the brain waves are measured there and further, detailed examinations are carried out. A visit to a neurologist is then usually recommended to rule out psychiatric and neurological disorders as the cause. Little is known about narcolepsy and it takes a long time for it to be diagnosed, sometimes even for several years.
Treatment & Therapy
Narcolepsy is still incurable today. Nevertheless, there are medications that can be used to better control or even prevent sleep attacks.
Medication for narcolepsy is complicated because there is no medication for narcolepsy per se, but the various symptoms are treated with appropriate medication. Even if good partial success can be achieved with the individually tailored drug therapy, it is not possible to get narcolepsy under control with this alone.
In most cases, those affected are recommended to undergo behavioral therapy. As a result, they can learn to deal better with their illness and develop strategies to lead as normal a life as possible despite their narcolepsy. To avoid injury, it’s important for sufferers to be aware of the dangers and develop good body awareness, such as turning on the stove only when they feel like they’re not going to fall asleep.
Outlook & Forecast
The prognosis for narcolepsy depends on the sufferer’s ability to manage the condition. The condition neither heals on its own nor can it be treated causally. Accordingly, the problem persists for life and can only be alleviated by medication.
Many people with narcolepsy are able to lead a largely intact life. However, there are often professional and social restrictions that stand in the way of personal development. This can sometimes have a very strong effect on the quality of life and reduces it. Those affected sometimes develop depression or social phobias. Both are due to actual and feared limitations as a result of narcolepsy. Furthermore, due to financial losses, financially difficult situations often arise for those affected. This is especially true when narcolepsy is undiagnosed and untreated.
An adapted sleep rhythm with regular breaks and avoidance of triggering situations can improve the quality of life. Those affected can spend most of the day awake and unrestricted. Due to the many side effects, including possible accidents, the mortality rate is increased by a factor of about 1.5. Similarly, narcolepsy often causes death, directly or indirectly. This risk remains for life, but can be reduced with medication.
Since the exact causes of the development of this disease are unknown, there are no sensible measures that could be used prophylactically. People who already have narcolepsy can only prevent accidents. They should neither swim nor drive and inform those around them about their illness.
The treatment and aftercare of patients suffering from narcolepsy flow into one another. There is generally no cure for this condition, but it can be treated. The patient has to take medication for the rest of his life. These are mostly drugs that belong to the group of narcotics.
Professional support from a specialized doctor is therefore absolutely necessary. The patient can contact the German Narcolepsy Society (DNG) for the right medical care. Both the disease and the possible side effects of some medications can reduce the patient’s quality of life. The sufferer may develop depression.
Participation in public life is made more difficult by the possibility of being able to fall asleep at any time. Regular meetings in the form of self-help groups and 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 those affected to deal with their illness. Patients must learn to deal with the disease. With increasing experience in dealing with the disease, they can cope better with everyday life. However, it is usually no longer possible to exercise a profession.
You can do that yourself
To improve health, the patient with narcolepsy can take various self-help measures that are not based on medication. Sleep hygiene should be optimized. The choice of mattress, the ambient temperature, the bedding and possible light influences must be adapted to the needs of the organism. It should be possible to rule out possible noises caused by external influences or the sudden ringing of a telephone. Restful and sufficient sleep can make a significant contribution to alleviating the symptoms.
The consumption of caffeine-containing substances should be avoided for several hours after the night’s rest. The daily routine should have a regularity in which the rest phases take place over a longer period of time in the same constant rhythms. Sleep and wake rhythms can be documented in sleep logs. The notes can be used to work out improvements and develop your own strategies. Sufficient breaks and naps should be taken in everyday life. Those affected must learn when their organism needs sleep and follow these impulses.
Stress and hustle and bustle are to be avoided. In order to avoid a drop in well-being or to prevent a lack of exercise, regular sporting activities should take place. Instructions for improved behavior to cope with everyday life are to be considered and implemented. An exchange of those affected in self-help groups can also be helpful and beneficial.