Narcolepsy: Sleep attacks in broad daylight

Suddenly they are dozing off: talking or eating, in the subway or in the department store. People who suffer from narcolepsy can not do anything about these sleep seizures.

Again and again he nodded at the director’s chair: Alfred Hitchcock, the famous filmmaker. Napoleon suffered from the same phenomenon, he suddenly slept at receptions and even at important briefings. Both are said to have suffered from narcolepsy . People with this disorder are hit by sleep attacks during the day – often at the most inopportune moments and without them wanting to.

For people with narcolepsy, everyday life is not easy. During the day, they often end up in dangerous situations, because they suddenly slip into sleep: while talking or eating, in the subway or in the department store , at school or at work. And even in the waking state, the muscles can suddenly fail them, the body becomes limp as in sleep. In addition, they are constantly tired, and at night they can not find peace. Many sufferers are unable to work or work and are regarded as severely disabled.

Experts estimate that about 20,000 people in Germany suffer from narcolepsy. Only with a few thousand is the disturbance really recognized as such. The number of unreported cases is high, many people do not even know that it caught them. They do not properly interpret or play down the first signs of the disease.

The compulsion to sleep arises in the brain

Narcolepsy is a neurological disorder: the part of the human brain that controls the sleep-wake rhythm is permanently disturbed. Therefore, this brain region does not produce enough hypocretin, a messenger that, together with other sleep hormones, determines when we are awake and when we sleep. Hypocretin is produced in the midbrain, in the so-called hypothalamus. This brain is one of the most important switching centers in our brain.

Whether only the hypothalamus and the hormone disorder lead to sleeping sickness is still unclear. Similarly, scientists are still puzzling which brain mechanism leads to the sudden onset of sleep attacks. So far, narcolepsy is not curable, but the symptoms can be alleviated.

Sleep disorders

The environment often shows no understanding

People with narcolepsy must follow many rules of behavior, if only to avoid accidents. For example when driving a car – if they are even at the wheel. Longer distances should always be avoided, shorter ones should only be tackled if they feel fit. If they feel the drowsiness spreading, they should stop immediately and take a nap.

Most of all, the sufferer is tormented that the environment is incomprehensible to suffering. All too often, friends, family members, or teachers are annoyed by the nod. They mock the sick as lazybones, quitters or bums. In addition, threatening bad grades or even the termination of the job.

Symptoms

Whether you have narcolepsy or only normal drowsiness, it can be checked for certain symptoms that are characteristic of sleep seizures. In addition to the sudden onset of slumber, these include flaccid muscles, complete paralysis and hallucinations.

But the symptoms may not be so obvious. Some patients overplay them with physical activity, others have become so used to certain restrictions over time that they barely notice them. In addition, not all symptoms appear at the same time. And often they are not there all of a sudden, but have gradually adjusted.

Mostly bored: sleep attacks

The first phenomenon that appears is usually falling asleep. They often attack the patient in situations that he experiences as monotonous: in the church or in conferences, in the cinema or in the theater. But the irresistible urge to sleep can also occur in other situations. Often, those affected can tackle it by becoming active and doing something. Nevertheless, the movements remain slower than usual.

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How often the need to slumber is felt varies from case to case, but most of the time sleep lures several times a day. Also, the duration of these naps can vary greatly – sometimes it is only a few seconds to minutes, another time hours.

The patients collapse or fall

The patients experience it as particularly bad if their muscles fail with clear consciousness. The limbs become limp, are without tension – cataplexy is the corresponding medical term. Then the knees become soft. Occasionally, even the entire body’s musculature becomes soft as in sleep. In this case, those affected collapse or fall.

The cataplexy is usually triggered by strong emotions such as laughter, jokes, annoyance, excitement, surprise, stress or sex. The loss of muscle tension can take only a second, but also several minutes. There are even reports of patients who had to remain awake for half an hour without muscle power. Cataplexias usually appear as a second symptom.

Most people with narcolepsy sleep lightly at night: they often wake up and stay awake for a long time. Occasionally, the sleepless are wallowing in bed or wandering around the apartment. This restlessness is typical of the sleep disorder. However, such states may indicate other causes.

Sleep disorders

Sometimes complete paralysis occurs

The sick get panic anxiety when they are – with full awareness – suddenly unable to move or speak. Such sleep paralysis occurs when falling asleep or waking up, it can last for seconds or even minutes. After that, the paralysis disappears as ghostly as it came. However, this symptom may have other causes.

Another feature of the disease: how automatically executed movements. When narcoloctics slip into the sleep state in the midst of everyday life, they just do what they are doing during the sleep attack – without being aware of their actions. Sometimes this has only harmless consequences: for example, when the salt cask is emptied over the pot during cooking or when nonsense is suddenly produced when writing. But it can also be dangerous: If, for example, a motorist continues to drive in spite of a sleep attack, a pedestrian marches off the sidewalk onto the street or a craftsman continues to work with the saw.

When dreams become real: hallucinations

People with narcolepsy, when falling asleep or waking up, produce dreams for a few minutes, but they seem completely realistic: for example, in the perception of the sick, strangers enter the room and threaten it. In such situations narcoleptics can no longer distinguish between dream and reality. These hallucinations are usually unpleasant and cause panic fear.

For the most part, the symptoms first appear between the age of 10 and 20 or between the age of 30 and 40. But there are also sick people who have noticed their first signs in another phase of their lives.

Diagnose

If you think you have narcolepsy, talk to your doctor. He will transfer you to a sleep laboratory if he shares your suspicions. There, the doctor tries to find out in a detailed conversation with you whether you actually suffer from narcolepsy.

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It lets you fill in various questionnaires and make sleep disorders. Afterwards you stay overnight in the sleep laboratory, wired and connected to various equipment. The gauges record what your body and brain do at night. That way, the doctor can recognize the structure of your sleep.

In addition, the doctor makes the Multiple Sleep Latency Test (MSLT), which documents the daytime sleepiness. In a dark and well-tempered room, a measuring device registers how quickly you fall asleep in rest and relaxation.

Many doctors do not recognize narcolepsy immediately

After these tests, the doctor can usually make a clear statement about whether you have narcolepsy or not. Occasionally further investigations are necessary. Maybe you will still be asked to do a reaction test. The doctor may also want to check your nerve water to see if your muscles sometimes fail.

Unfortunately, narcolepsy patients often find out about their fate relatively late. Because the symptoms are often creeping, also trivialize or displace the sufferers their complaints often. And many doctors do not recognize the disease – because of the ambiguity of some symptoms. Instead, physicians often believe it is depression or, due to muscle failure, epilepsy.

Therapy

Narcolepsy is not curable so far. But the quality of life of the sick can be restored to a certain extent with medication and rules of conduct.

There are a number of agents that help to awaken and promote concentration: for example, modafinil, methyl phenidate, or sodium oxybate. Others improve disturbed night sleep, for example triazolam. Muscle paralyzes, sleep paralysis and hallucinations suppress medication with the active ingredients clomipramine, fluoxetine or reboxetine. Most patients need several of these remedies at the same time. The doctor will work with you to create the best possible combination, depending on how the medicine works and what the side effects are.

Plan nap in everyday life

In addition, a set of rules of conduct can make your life easier. In the first place you should do everything to improve the night sleep . Obese people often find it easier to lose weight. But even for the slender, it is important to eat well and properly . Because food can certainly influence whether we feel awake or sleepy.

Small naps during the day can relieve you – provided that you deliberately plan the nap. Divide the work correctly, take enough breaks, and watch for the first signs of fatigue in what you are doing. Be aware that you have a greater accident risk. Avoid everything that could endanger yourself and others.

Do not retire with your illness in the quiet little room, but talk about it with friends, acquaintances, colleagues, teachers and employers. Only then can you hope for understanding.

Tips

If you suspect that you have narcolepsy, you should seek the help of a doctor as soon as possible. Because only when you know if and how seriously you are ill, you can do the right thing. And only then can you realistically tackle career plans and problems and also be privately prepared for the disease. You get advice and help in self-help groups. You can find them on the narcolepsy article.

You may also have someone in your circle of friends and colleagues who suffers from a serious sleep disorder. Try to make him understand and not ridicule! And if you ever find that this person collapses because his muscles soften, they support him and bring him into a comfortable position. You do not have to do any more. The collapsed does not need a doctor or the good tip to sit down. After a few seconds or minutes, the spook is over.

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Expert’s advice

Professor Geert Mayer, sleep specialist at the Hepatha Clinic in Schwalmstadt-Treysa, answers 
Can someone who suffers from sleep disorders and nightmares at night suffer from narcolepsy? Generally, yes. Of course, it can only be a temporary feeling disorder. However, if such symptoms persist for over three months and severely affect one’s life, then one should be examined in a sleep laboratory.

Do narcoleptics have to be afraid to pass the disease on to their children?

You should be aware that there is a 10 to 40 times greater risk that your children may be sleepier during the day than other children. However, it is still not clear how big the genetic component of the disease is.

If a narcoleptic is pregnant, is there a risk to the child’s embryo and development?

The mother’s narcolepsy poses no danger to the unborn child. Normally, the medication is discontinued during pregnancy. If the mother suffers from severe cataplexy – if her muscles often become flaccid – she may run the risk of continuing to take medication. Thus, the child is not endangered by a fall of the mother.

Do narcoleptics have a shorter life expectancy than healthy ones?

No, unless they are killed by accidents. For example, when a smoker with a burning cigarette falls asleep and burns in bed.

Apparently, narcolepsy can hide behind children’s hyperactivity. What do you advise the affected parents?

Children up to puberty try to suppress drowsiness through permanent activity. Parents should be tested to see if there is really an attention deficit syndrome or narcolepsy behind this agitation. A pediatric sleep specialist can often solve the problem.

If a narcoleptic causes an accident despite all precautions, does his liability insurance slip?

If he knows his diagnosis and could have prevented the damage by changing his behavior, the insurance does not pay. For everything that can not be controlled and for which no precaution can be taken, the insurance pays ..

Research

Thermo-clothing might help future narcoleptics. Dutch scientists have found out that not only is the sleep-wake cycle out of control in these patients, but also the regulation of body temperature. In healthy individuals, the temperature of the arms and legs decreases during the day: While the body’s core is 37 degrees Celsius, the limbs can be up to 6 degrees colder. However, in people with narcolepsy, arms and legs remain warm.

The increased temperature, the researchers suspect, can disrupt the heat-regulating nerve cells in the brain. These cells are located in the so-called hypothalamus: This control center controls not only our body temperature, but also our sleep-wake cycle. If the presumption of the neurologist is correct, narcoleptics did not suffer from a sleep disorder, but from a disturbance of the temperature regulation. The sleep seizures would therefore be only a consequence of an overloaded brain.

Special clothing that regulates the heat balance could therefore possibly free the patients from their complaints, write Rolf Fronczek from Leiden Medical University and his co-authors in the journal “Sleep”. Matching cool pants and jackets, however, still have to be developed.

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