This year World Narcolepsy Day takes place on Sep 22 and is dedicated to raising awareness of this condition on a global level. The aim is to increase public knowledge about narcolepsy, inspire action and reduce stigma towards those who are affected!
Narcolepsy is a rare lifelong neurological disorder that affects the natural cycles of sleeping and waking. It is characterized by excessive sleepiness during the day. This rare disease affects 2–5 out of every 10,000 people. No cure of the disease is currently possible. Therefore the treatment concentrates on relieving the symptoms as far as possible.
Recognizing narcolepsy can be complicated. The symptoms are not always easy to identify. Due to the rareness of this disease up to now it takes on average ten years to establish the diagnosis. There are five characteristic symptoms of narcolepsy which can differ from person to person:
Excessive daytime sleepiness is often the first symptom that becomes apparent.
1. Excessive daytime sleepiness (EDS): Excessive daytime sleepiness means that you feel tired during the day, lack energy and might fall asleep suddenly. These episodes can last from a few seconds up to several minutes. Excessive daytime sleepiness often causes learning difficulties as memory and attention are affected.
2. Cataplexy: Cataplexy is a short duration (seconds or minutes) where muscle strength and control are lost while still being conscious. Cataplexy can be partial and affecting only a few muscles (weakness in the knees for example) or total, causing the person to collapse. It can be triggered by emotion, like laughing and surprise and affects approximately 70 to 80% of patients suffering from narcolepsy.
Disrupted night sleep
3. Disrupted night sleep: night-time sleep may be fragmented, which happens when you wake up several times during the night. Sometimes because of bad dreams, as well as for no specific reason. The duration of being awake during the night can vary
4. Hallucinations: The hallucinations tend to occur when waking up or falling asleep. The experiences during hallucinations are hard to separate from reality. Most commonly they are like nightmares but can also occur as shapes and colors changing size and form.
5. Sleep paralysis: Sleep paralysis is the inability to move the limbs or move in any way when waking up in the morning or from a nap. This can last from a few seconds up to several minutes. Sleep paralysis is a normal situation during sleep that prevents you from moving while you are dreaming. But with narcolepsy it can also occur while waking up.
To diagnose Narcolepsy tests can be carried out, some are done by you and some by a qualified neurologist.
There are many aspects of the disease that are not obvious to others not suffering from it. It is sometimes hard for those people to understand what a person suffering from narcolepsy is experiencing. The difficulties concentrating, and the sleepiness can cause
learning difficulties, which in turn can lead to depression and feeling inadequate.
Try to sleep at least 8 hours per night and have scheduled naps during the day.
Physical activity is important.
Avoid big and heavy meals, try to eat several small meals and adjust the calroie intake to your physical activity.
Limit alcohol consumption as it makes the excessive daytime sleepiness worse.
Remember that narcolepsy does not
affect intelligence. Learning might just take
more time while you are sleepy.
Inform people in your life about narcolepsy and associated symptoms and how to react. .
Ask your doctor about activities appropriate for you, some might be with high risk of accidents. Some activities such as
swimming, climbing and diving
might be related with a high risk
If you wish to get pregnant or are pregnant, inform your doctor.
Associate Professor Stefan Seidel has experience in the treatment of patients with narcolepsy. A specialist in neurology, he speaks about the causes of the rare disease and explains what patients should be aware of.
"If you or your physician thinks you have narcolepsy, it's important to get a referral to a specialized sleep lab, which is a neurological sleep lab. There you can do a polysomno-graphy and multiple sleep latency tests – these are essential for a proper diagnosis and the subsequent treatment."
Please click below to download the brochure about narcolepsy.
Feel free to contact our team if you have any further question.