A bad night’s sleep, a flurry of responsibilities or a lack of time to rest – sound familiar? Each of us sometimes has such an intense day that we dream of a short nap. But there is a disease in which naps are not a pleasure, but a daily affliction. This is narcolepsy. What do we know about it? Where does it come from? How is its diagnosis and treatment carried out?
What is narcolepsy
At the end of the nineteenth century, French physician Gélineau described the case of a patient who could fall asleep up to two hundred times during the day. In addition to uncontrollable naps and excessive sleepiness, he also complained of sudden (but brief) episodes during which he was unable to control his own muscles. The combination of these symptoms has been referred to as narcolepsy – from the Greek words meaning “numbness” and “seizure.” And this is how we can describe narcolepsy – as a “seizure of numbness.”
Example: Maria falls asleep for half-hour naps several times during the day. When she gets up, she feels full of energy, but before long she is overwhelmed again by a drowsiness she can’t resist. It scares her that sleep can come at any time – at work, at the supermarket, at the gym. It also worries her that she sometimes completely loses control of her body for a while. This morning, leaving the kitchen, she felt her knees bend and her tea cup almost fall out of her hands.
Narcolepsy – symptoms
- paroxysmal excessive sleepiness (occurring even after a long and quality sleep),
- repeated short naps during the day (usually at intervals of 2-3 hours),
- cataplexy – sudden decrease in skeletal muscle tone, often triggered by unexpected strong emotions (joy, surprise, anger),
- sleep paralysis – a state in which one retains full consciousness, but is unable to make any movement (accompanies falling asleep and, less often, awakening),
- sleep hallucinations – hypnagogic (occurring while falling asleep) or hypnopompic (while waking up),
- breathing disorders during sleep,
- periodic movements of the limbs during sleep,
- a tendency to frequent nocturnal awakenings.
Symptom of narcolepsy – attacks of drowsiness
Narcolepsy is associated with attacks of excessive daytime sleepiness and falling into short naps. Most often they last from a few to several minutes, but in some cases they even exceed half an hour. After waking up, we feel rested – just like after a long, restorative sleep. However, before long, the growing drowsiness arrives again.
Sometimes sleep attacks are preceded by various additional symptoms:
– darkness in front of the eyes,
– a burning sensation in the eyes,
– double vision and other vision disorders.
Narcolepsy – cataplexy
Seizures of cataplexy (i.e., a sudden drop in muscle tone) often manifest themselves through drooping of the head or jaw, trembling of the facial muscles, bending of the knees, and, less commonly, falling. They are usually triggered by strong emotions. Cataplexy can therefore occur in a wide range of situations:
- right after we bump into a long-lost friend,
- when we give an important presentation in front of co-workers,
- when we burst out laughing during a dinner with friends,
- when someone asks us an embarrassing question,
- while experiencing an orgasm.
Narcolepsy – a sleep disorder
Narcoleptics often complain of experiencing sleep paralysis. This is a state before falling asleep or just after waking up, in which we feel that we cannot move at all – as if we were frozen. It is accompanied by a great deal of anxiety, because we are completely aware of our inability to move and are left only to wait for the paralysis to subside on its own.
With narcolepsy, hallucinations also occur. They can accompany falling asleep, awakening from sleep, as well as sleep paralysis. They are often frightening in nature and arouse fear that is difficult to get rid of long after waking up.
The first symptoms of narcolepsy
The first symptoms of narcolepsy may be mild and gradually build up over time, or there may be sudden and intense episodes of excessive fatigue and sleepiness. The first symptoms of narcolepsy can vary depending on the person and the underlying causes.
Causes of narcolepsy
- the development of an autoimmune disease,
- genetic predisposition and environmental factors,
- neurological problem, atrophy of hypothalamic neurons that produce hypocretins (hormones responsible for the rhythm of sleep and wakefulness).
Why can narcolepsy be dangerous?
An overwhelming feeling of daytime sleepiness can occur at any time, even during daily activities:
- when walking down the street or crossing a pedestrian crossing,
- when we attend an important meeting at work,
- when we drive a car,
- when we exercise at the gym,
- when we eat a meal.
Episodes of cataplexy are also dangerous for us. Although brief (most last a few seconds, rarely a few minutes), they can be very dangerous. If we experience severe seizures, we can suffer a variety of injuries, including:
- abrasions,
- superficial wounds to the head,
- knocking out teeth,
- concussion of the brain.
Narcolepsy – how to diagnose?
Narcolepsy is a disease with which we should see a doctor. He is the specialist who will make an accurate diagnosis and look at our symptoms. It will then prove necessary to perform a series of tests, including:
– a blood test,
– imaging examination of the head,
– cerebrospinal fluid examination (to see what the hypocretin content is).
In addition, a polysomnographic study is also performed, which involves recording the processes occurring in us during sleep. This allows us to assess the different phases of sleep, the physiological reactions taking place, breathing patterns, heart function and blood oxygen levels.
A multiple sleep latency measurement test is also often recommended. Its performance involves being given the opportunity to lie down and take a twenty-minute nap five times during the day. Through the polysomnographic test, the time it takes us to fall asleep is determined. If it is less than five minutes, we are dealing with pathological sleepiness.
It is also important to exclude other diseases associated with disturbed sleep. Sleep problems can, involve many disorders. These include:
- epilepsy,
- kleine-Levin syndrome,
- exogenous sleep deprivation,
- idiopathic hypersomnia,
- restless legs syndrome,
- periodic limb movements during sleep,
- sleep-wake rhythm disorders,
- organic brain damage,
- obstructive sleep apnea,
- affective diseases (depression, schizophrenia).
Narcolepsy – test
To test for narcolepsy, you can also use the Epworth Sleepiness Scale – we evaluate on it how easily we could fall asleep in a given situation.
However, the results of this test alone are not enough to diagnose narcolepsy. A broader history and specialized tests are needed for this. The diagnosis of the disease requires the presence of excessive sleepiness, daytime sleep episodes every day for at least three months, in addition to information about a history of cataplexy attacks.
Treatment of narcolepsy
Treatment of narcolepsy is focused on reducing the number of episodes of cataplexy and falling asleep during the day. Antidepressants are used to reduce the severity of cataplexy symptoms. Excessive sleepiness, on the other hand, is primarily treated with amphetamine derivatives (mainly methylphenidate), modafinil and armodafinil. The specialist selects the appropriate products and their dosages based on a detailed interview with the patient and consideration of his needs.
Narcolepsy – natural treatment
Can the use of unconventional methods treat narcolepsy? Studies do not confirm that such interactions can provide real help, so it is not worth replacing treatment with specialists.
However, it is good to act comprehensively and take care of a healthy lifestyle. Particularly important here turns out to be a healthy diet – supplying the body with vitamins, drinking enough fluids and limiting carbohydrates to 20 grams per day. These were exactly the recommendations given to participants in a study conducted in the United States. Subsequent measurements showed a reduction in their narcoleptic symptoms – especially those related to sleep paralysis and general drowsiness.
Supportive (i.e. non-pharmacological) treatment is also recommended:
- maintaining proper sleep hygiene,
- scheduling naps during the day,
- avoiding monotonous activities,
- avoiding situations that trigger strong emotions.
Narcolepsy – cognitive-behavioral therapy
Cognitive-behavioral therapy can provide additional help in the treatment of narcolepsy and other sleep disorders. But we can’t treat psychotherapy like a magic cure – it’s not a pill we’ll take once and see a sudden cessation of unpleasant symptoms.
So how should we treat this form of interactions?
- Psychotherapy is a help in working on everyday difficulties
Narcolepsy is a decrease in concentration. It’s a difficulty in learning, working and doing daily chores. It’s uncertainty about when the next bout of sleepiness will occur. It’s a deterioration of mood that sometimes we can no longer cope with.
Psychotherapy creates a safe space to address these problems. During meetings, we consider which aspects of the disease are most difficult for us and discover what thoughts accompany us as we struggle with these challenges on a daily basis.
- Psychotherapy is a support in implementing healthier habits
People with narcolepsy should take special care of proper sleep hygiene. They are encouraged to follow several rules. These include:
- maintaining a sleep routine (going to bed and getting up at the same time every day),
- ensuring proper sleeping conditions (a properly darkened and quiet room, a comfortable bed, a temperature of 19-22 degrees),
- avoiding intense physical activity late at night,
- avoiding reaching for alcohol and tobacco in the evening,
- limiting caffeine intake.
The psychologist educates on sleep hygiene and supports monitoring one’s own sleep practices. But even at the stage of implementing healthy sleep practices, we may find that there are certain beliefs that inhibit us from changing.
Example: Ilona has been trying to fall asleep at the same time for several days. She goes to bed, but today sleep is not coming. She is getting more and more nervous. She thinks: “I’m hopeless. Even going to bed at a normal time doesn’t work for me. And actually why am I doing this? It won’t change anything.”
And these are the beliefs we will gradually deal with.
- Psychotherapy is about changing the way we think, the way we perceive ourselves and the disease
The symptoms of narcolepsy and the difficulties experienced in connection with them can worry us a lot. It’s even harder for us if they are overlaid with negative self-image and dysfunctional beliefs.
What might we think of ourselves in this way?
Because of narcolepsy, I will never be happy again!
These symptoms are some kind of punishment for my behavior – I am guilty of it.
Narcolepsy means that I won’t be able to achieve anything anymore.
It usually turns out that it’s not just the disease that’s responsible for such negative self-perceptions. The problem often lies much deeper – and even if we weren’t experiencing the symptoms of narcolepsy, we still wouldn’t see ourselves as fully valuable.
And yet we deserve to be happy and fulfilled. To give ourselves deep acceptance and to approach our own limitations with understanding. That’s why during therapy we will look at the thoughts that automatically form in our heads.
It is behind them that we hide various beliefs – mainly about ourselves. And if we find that we perceive ourselves as inferior, unimportant and helpless, this is an aspect that is really good to work on. Once we transform our thinking a bit, our attitude toward ourselves will change. And then gradually we can start giving ourselves more warmth and understanding. And while this won’t remove the disease, it will certainly give us more inner strength to face it.
- Psychotherapy is an opportunity to delve into emotions
Experiencing narcolepsy is not easy. We may feel frustrated and angry that the disease happened to us. Sometimes there are also helplessness and resignation – especially when the symptoms are severe and are followed by various unpleasant consequences.
It is these emotions that we deal with during psychotherapy. We reflect on what feelings the disease arouses in us and learn to express them. We may not even have been aware until now how much emotional ballast has accumulated in us – and when we give vent to it, we will finally feel the desired relief.
- Psychotherapy is about discovering new ways to reduce stress
The very suspicion of narcolepsy is a source of great stress for us. Tension also arises during the diagnostic process, waiting for the results and after we receive them. We worry about how to manage the symptoms, how to treat ourselves, how to live..
Discovering new techniques for coping with stress can be of great help to us. With their help, we will learn to draw our thoughts away from unpleasant symptoms and focus on experiencing the present moment. We will free the body from accumulated tension and clear the mind. We will try to slow down, listen to our own needs and soothe ourselves.
- Psychotherapy is the way to accept narcolepsy
Narcolepsy is a disease that does not disappear with time. In fact, there is no chance that it will go away on its own. In the beginning, its diagnosis is very hard – because it reaches us that the symptoms will always be present in our lives already.
In addition, we face incomprehension from friends, co-workers and loved ones. Many people don’t understand narcolepsy: it seems to them that we are being dramatic, and that our drowsiness will be remedied by an extra espresso. We feel abandoned and doomed to loneliness. An unfair fight against an incurable disease.
But treating narcolepsy like a hated enemy won’t help us at all! Neither will pretending that nothing is wrong with us at all. And although immediately after hearing the diagnosis we don’t even want to think about the fact that the disease can somehow be “tamed”, it is possible.
With persistent work, we are able to accept ourselves and accept that narcolepsy is part of our lives. And the experiences associated with it, although sometimes very difficult, can give us strength and motivate us to persevere through all the challenges that life prepares for us.
Narcolepsy – improve the quality of your life
Although the symptoms of narcolepsy cannot be completely removed, properly selected treatment minimizes their experience. And when you also include psychological support, you will begin to learn how to accept the disease and improve your quality of life.
Remember – narcolepsy doesn’t have to be a hindrance! If you feel that you are finding it difficult to cope with the diagnosis, make an appointment with a psychologist. We are here for you!
Bibliography
Husain, A.M, Yancy, W.S., Carwile, S.T., Miller, P.P, Westman, E.C. (2004). Diet therapy for narcolepsy, Neurology, 4(62), pp. 2300-2302.
Wierzbicka, A., Wichniak, A., Jernajczyk, W. (2014). Narcolepsy – have we learned all the secrets of the disease? Cosmos. Problems of Biological Sciences, 63(2), pp. 245-252.
Zawilska, J.B., Woldan-Tambor, A., Plocka, A., Kużajska, K., Wojcieszak, J. (2012). Narcolepsy: etiology, clinical picture, diagnosis and treatment, Proceedings of Hygiene and Experimental Medicine, 12(66), pp. 771-786.