Symptoms of narcolepsy
The symptoms of narcolepsy are often referred to as CHESS.
Excessive Daytime Sleepiness (EDS)
Cataplexy is an abrupt temporary loss of voluntary muscular function and tone. This is triggered by an emotional stimulus such as laughter, pleasure, anger, or excitement.
This can manifest as a full body collapse as well as only on parts of your body. Like your face muscles starting to hang while laughing for example. Or buckling knees where you can barely stay up. Your jaw dropping. Your head slumping down. Slurred speech. Double vision.
A full-blown attack will look like someone collapsing from a heart attack or seizure. They will lose speech and any other way to respond to your questions. Most people have their eyes closed but are very aware of everything happening around them. They just can’t respond to it until they gain back control over their muscles. This normally only takes a few minutes although there are severe cases that last longer.
While recovering, this person will most likely have trouble with speech and sound like a drunk. Still unable to control all muscles.
Although Cataplexy by itself is not dangerous, the consequences can be. Like head injury when you fall or land in an awkward position.
Some well-known triggers for cataplexy:
- Running into an acquaintance unexpectedly.
- Good jokes.
- Sudden (scary) moves right next to you.
- Sports and gaming.
If you have full body collapses you should not take it lightly. Make people around you aware it can happen and what (not) to do. Apply on this website for a medical information card if you are outside a lot on your own.
Most people with narcolepsy have cataplexy, referred to as NT1 or narcolepsy type 1. Cataplexy comes in different degrees. Not everyone has clear full-body collapses. Just being “clumsy” and dropping things all the time could be cataplexy too.
Hallucinations are where you hear, see, smell, taste, or feel things that appear to be real but aren’t. They are called hypnagogic hallucinations if they happen while you fall asleep and hypnopompic hallucinations if they occur upon waking. If narcolepsy is not well controlled, this can also happen during the daytime. While you think you are fully awake, able to drive or operate machines. These are so realistic that they can create false memories! A presence in your bedroom is the most commonly reported hallucination. This can be extremely scary for children and cause them not to want to go to sleep. Hallucinations have been reported in up to 50% of pediatric patients with narcolepsy.
Excessive daytime sleepiness is usually the first sign of narcolepsy. It’s a difficulty staying awake or alert with an uncontrollable urge to sleep during the daytime while feeling tired all the time. It can have a significant impact on everyday life. Feeling drowsy throughout the day and struggling to stay awake makes concentrating at work or school difficult. This is often referred to as “brain fog”. Avoid operating (heavy) machinery or driving in these circumstances.
Sleep paralysis is a feeling of being conscious with the inability to move or speak when you’re falling asleep or waking up. This usually only lasts seconds to minutes. It sometimes comes with hypnagogic or hypnopompic hallucinations and can be frightening.
Sleep disruption or Disrupted Nighttime Sleep (DNS) is when you wake up frequently throughout the night even when you might fall asleep easily. It’s not always true that people with narcolepsy can sleep easily. The poor quality of sleep should be treated as a priority to minimize your daytime symptoms.
There are a lot of misperceptions of narcolepsy. Not everyone has all the symptoms and on average just 3 out of five. Not everyone experiences the same. Feel free to discuss your specific or more in-depth symptoms and experiences in our private Facebook group.
People with narcolepsy may be misjudged as being lazy, sad, or rude.