Living with Narcolepsy

Excessive Daytime Sleepiness, or EDS, is the most common symptom of narcolepsy. Even after what may seem an adequate night's sleep, a person suffering from narcolepsy will often feel extremely tired throughout the day, perhaps even having an irresistible urge to fall sleep.

It's very hard for a person who doesn't have narcolepsy to understand what EDS feels like. When someone who suffers from narcolepsy says "I feel tired", it's usually met with a comment like "everyone gets tired, just get up and make yourself do it." The best way to describe how it feels to have narcolepsy is to imagine how you would feel if you hadn't had any sleep, at all, in 2 days. This is the constant feeling someone with narcolepsy has.

Cataplexy is when a person experiences muscle weakness, usually brought on by strong emotions such as laughter, surprise or fear.

The muscle weakness can vary from an almost unnoticeable slackening of the muscles in the face, to a complete collapse of the body.

This symptom can often be embarrassing and dangerous.

During REM sleep, the body undergoes a natural type of paralysis, to prevent us from acting out our dreams. This shouldn't happen while we're awake but, in people who suffer from narcolepsy, it can.

Sleep paralysis is when a person is temporarily unable to talk or move. It can take place while awake, or sometimes when falling asleep. It can last from a few seconds to few minutes.

Hypnagogic hallucinations are vivid dreamlike experiences that occur while a person is falling asleep, dozing, or while awake. They can often be very frightening.

Fortunately I very rarely experience this, and if I do it's when I'm falling asleep. They usually involve spiders (probably because I'm afraid of spiders!).

Automatic behavior is when a person continues to function while asleep, but then has no memory of performing such tasks when awake.

This used to happen to my great grandmother. She would be sitting in her chair, knitting. Then suddenly she would fall asleep, but continue to knit. When she awoke she would have no memory of knitting in her sleep, but there would be rows and rows of badly pearled knitting!

Many sufferers of narcolepsy have a disrupted sleep pattern. While most people enter REM sleep after about an hour and a half, people will narcolepsy will often enter REM sleep immediately after falling asleep. This means that straight away they have vivid dreams which they can often remember after waking.

This is something that affects me. If I have a nap during the day, I can often fall asleep for just a few minutes, but I will start to dream immediately and can remember dreaming when I wake. Also in a morning, when I'm dozing inbetween snoozes on my alarm clock (just 5 mins apart) I can have what seem like long dreams in a short space of time.

I was diagnosed with narcolepsy a couple of years ago, although I suspected I had it a few years before that. My brother, who's 7 years older than me, started with symptoms at the same age that I did. It took him several years to get referred to a sleep specialist and be diagnosed from when the symptoms started. Fortunately, when my symptoms started, I already had a point of reference. I was referred to the same sleep specialist and got my diagnosis a lot more quickly.

Currently I am controlling my EDS with Modafinil. This is a drug that's commonly used to treat narcolepsy and also shift work sleep disorder. This helps me not to feel so tired during the day, and helps me concentrate better at work.