What is it like to be narcoleptic
Narcolepsy - more than just being tired
Narcolepsy - what is it?
Normally, messenger substances in the brain regulate wakefulness during the day and sleep phases at night. In people with narcolepsy, this regulated sleep-wake sequence is disturbed.
It is estimated that around 3 in 10,000 people are affected by this "sleep addiction". The exact reason is unclear. But we know that the body's own defenses play a role. Narcolepsy can be detected with detailed discussions, additional questionnaires and examinations in the sleep laboratory. Further tests can help rule out other reasons for a sleep disorder.
The disease occurs mainly between the ages of 15 and 40. Some are affected in childhood. The symptoms can begin gradually or suddenly. New symptoms may appear over the years. Narcolepsy usually lasts for a lifetime. Life expectancy is normal.
Signs of the disease
Typical symptoms of narcolepsy are:
- excessive daytime sleepiness: The fact that one is more sleepy despite getting enough sleep can be a first indication of the disease. This sleepiness is considered a characteristic of narcolepsy if it has been occurring daily for more than 3 months.
- constant, unwanted falling asleep during the day: Especially in monotonous situations, such as watching TV, reading or as a passenger in the car, those affected fall asleep against their will - for a few minutes to about an hour. This nodding off has an impact on everyday life, for example at school or at work. Others then sometimes mistakenly think that one is lazy, unfocused or unreliable. This can be emotionally stressful for people with narcolepsy.
- sudden slackening of muscles due to emotions (Cataplexy): In about 8 out of 10 people, the muscles relax uncontrollably and repeatedly for a few seconds to about 2 minutes. Those affected experience this consciously. For example, limp legs can lead to falls. This is triggered by feelings such as anger, fear, joy or laughter.
Other signs can be added:
- Sleep paralysis: When falling asleep or waking up, you cannot move at all temporarily.
- sleep-related hallucinations: false perceptions when falling asleep or waking up, such as seeing shapes or hearing sounds
- Disturbed night sleep: light sleep, waking up frequently, lying awake for hours, nightmares
- Automatic behavior: everyday actions are unconsciously continued when you nod off, for example eating or writing.
There are good treatment options to relieve discomfort and make your everyday life easier. The disease cannot be cured.
Changes in behavior:
It is important that you plan for daytime sleeping times and, in consultation with a doctor, learn certain behaviors in order to be able to cope better with everyday life. Behavioral therapy can help with this. You can also receive support with emotional stress.
If the changes in behavior are not enough, various medications can also be used. Which remedy you receive depends primarily on your complaints. Possible comorbidities also play a role. The drugs do not work the same for everyone. It is possible that the same remedy may mainly improve drowsiness in one and mainly relieve cataplexy in another. The doctor will adapt the treatment to your personal situation.
In the case of increased daytime sleepiness, experts recommend wakefulness-promoting agents (Stimulants). Studies indicate that many sufferers are less tired during the day as a result. For narcolepsy, four of these drugs are currently approved for adults. Usually comes first Modafinil, Pitolisant or Sodium oxybate for use. Regular medical check-ups are advisable, as the drugs can have side effects and some of the effects may wear off over time. In addition, for cataplexies, sleep paralysis and hallucinations, remedies for depression can be used (Antidepressants) come into question. Most of them have not yet been approved for the treatment of narcolepsy.
Research groups are testing further active ingredients in studies.
What you can do yourself
Specialists - especially for neurology - with the additional designation "sleep medicine" know best about narcolepsy. You can search for a doctor's practice here: www.arztsuche.kbv.de.
- Experts recommend sticking to a solid sleep and getting up times at night - even on days off. This can improve your nighttime sleep.
- It can help to consciously sleep briefly once or twice during the day. You will then be less tired and more productive.
- In situations that require a lot of concentration, it can help to specifically consume caffeine, such as coffee, black tea or cola.
- It is advisable to watch yourself. As a help, you can write down your sleep times. This gives you an overview of your sleep-wake cycle.
- Try to be physically active on a regular basis. Exercise and sport are good for reducing fatigue. Try what helps you.
If you are going to have a medical procedure, tell your healthcare team that you have narcolepsy. The specialists can then prepare better for the situation. Also say what medications you are taking on a permanent basis. It is important for those treating you to know that you may be temporarily unresponsive when you wake up from anesthesia.
It can be helpful to be open about your condition. Weigh up on a case-by-case basis. You can get tips and support in self-help groups. There you can exchange ideas with other affected persons.
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