Narcolepsy Awareness Day
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.
- Normal sleep: we sleep 1/3 of our lifetime and we need tat sleep in order to recharge our batteries so we can learn and memorize new things every day.
- We all need sleep to stay healthy: our sleep is divided into sleep cycles, each lasting approximately 90 minutes. Every cycle contains two different kinds of sleep, non-rapid eye movement sleep (non-REM sleep) and rapid eye movement sleep (REM-sleep). Non-REM sleep is divided into four stages, from light to deep sleep. REM-sleep is normally the last stage of a sleep cycle in which we dream more vividly.
- Narcolepsy and the brain: when you suffer from narcolepsy a small area in the brain is not working properly. For example: in type I this is caused by a lack of a certain substance, called orexin. Orexin regulates the wakefulness phase and sometimes muscle tone. The group of nerve cells that is lost because of narcolepsy cannot be restored, but medicine can help relieving the symptoms.
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.
- Sleep diary: taking notes of daily habits (bed time, waking up, quality of sleep, etc.) for a time period of at least three weeks.
- Epworth sleepiness scale (ESS): A self-assessment questionnaire that is used to quantify and assess the risk of falling asleep during 8 situations of daily life, such as watching TV or talking to someone.
- Actigraphy: A bracelet that records movements is worn during daily life to record and analyze data about the sleeping habits.
- Polysomnography (PSG): A sleep recording where brain activity is measured and transitions between sleep stages are observed during the night. By placing electrodes on the head and other selected parts of the body, the sleep patterns can be observed.
- Multiple sleep latency test (MSLT): This test is done after the PSG and measures the time it takes to fall asleep and brain activity. During five different times a day it is measured how long it needs to fall asleep as well as the transitions between sleep stages. This test revealed if you go directly from wakefulness to the last stage of sleep (REM-sleep).
- Maintenance of wakefulness test (MWT): The MWT tracks how the symptoms change. During the test the physician usually measures brain activity to study the sleep stages and transitions. It is performed before treatment and followed up later again to observe if improvements were made.
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.
- Work: narcolepsy can have a significant impact on working life, resulting in impaired performance and increased risk of workplace accidents. It is important to inform the company and to maybe adapt the workplace and hours. Some jobs are not appropriate, for example: pilot, professional driver or jobs predominantly in sitting positions.
- School and University: narcolepsy can have a negative impact on your studies. Adjustments like naps and breaks may be necessary. It may lead to a control over their loss of attention that can result in being unable to answer simple questions.
- Driving: a doctor needs to be consulted as drowsiness and fatigue are incompatible with driving. It must be ensured that the symptoms are under control.
Don’t hesitate to contact a sleep lab and in case of need a psychiatrist. Feeling low or inadequate can become too much for some, and these feelings can eventually lead to depression. Therefore, it is important that your family and friends keep a close eye on you and if your mood changes, they can seek help and support.
Helpful tips about living with Narcolepsy
- 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 calorie intake to your physical activity.
- Limit alcohol consumption as it makes the excessive daytime sleepiness worse.
- Narcolepsy does not affect intelligence, it might just take more time to learn.
- 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.
- If you wish to get pregnant or are pregnant, inform your doctor.
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."
Brochure about Narcolepsy
Please click below to download the brochure about narcolepsy.
Feel free to contact our team if you have any further question.