What is narcolepsy?

Narcolepsy means “falling asleep” (Greek derivation). A person with narcolepsy will experience lots of daytime sleepiness, possibly with sleep occurring against their will (called sleep attacks). This will usually happen even though they feel they are getting enough sleep at night. The

sleepiness will be worse at some times of the day (afternoons) than others and will be hard to control unless they have a nap. The person will want to go to sleep, rather than just feel tired or weary without a strong need for sleep. They will achieve a score of at least 12, and usually over 16 on the Epworth Sleepiness Scale.¹³³

In observing a lecture theatre with some students asleep in it, we wouldn’t suspect narcolepsy in those students. A teenager falling asleep during a lecture is not that unusual, especially if it’s boring and the room is warm and/or dark. However, if the lecturer/teacher in front of the class was having trouble staying awake we could become concerned. People with

narcolepsy may often be very sleepy doing things like talking on the phone, writing a letter or eating a meal.

Narcolepsy usually starts during adolescence and occurs equally in males and females. In a third of all people with narcolepsy some symptoms started before they were 15 years of age. For most the sleepiness started either during their years of being a teenager or

young adult. It can be hard to diagnose when sleepiness is the only symptom because there are lots of reasons why people are sleepy and narcolepsy does not yet have a very high profile

with doctors and the community. (See Case Study 5.1.)

Narcolepsy symptoms often begin during teenage years.

Case Study 5.1:

When Marcus was 14 he had a bad virus. He felt dreadful and was in bed for two weeks. They couldn’t say exactly what it was but the doctor thought it was a type of flu. After the virus, when he was back at school, he often felt very tired and sleepy. Everyone thought the sleepiness was due to the after effects of the virus. Marcus would drag himself home from school and just have to have a one or two hour nap. He was too tired to ride his bike around with his mates, like he used to do. He usually felt a bit better after a nap but it didn’t last long. He knew he wasn’t doing as well at school as before the virus but he just always felt too tired and sleepy. The problem was that the sleepiness didn’t go away, although everyone expected it to. His GP didn’t seem to know what might be causing his sleepiness and just suggested regular bed times. He felt like he was already spending too much time in bed. About a year after the virus he even fell asleep halfway through a two hour exam. His dad took him to the doctor again after that but a blood test showed up nothing.

They waited another few months but things seemed to be getting worse- not better. He spent so much of his holidays sleeping he didn’t really have much time for his friends and started to feel lonely but he couldn’t do anything about it. A few weeks into the new school year his parents were talking to his teacher and she commented on how sleepy he often seemed. So his dad suggested he write down every day when he was sleeping or napping and also when he felt he was struggling to stay awake. It was hard to do because when you’re tired you don’t want to do anything extra and sometimes it’s hard to remember how you felt. Eventually they had a journal covering most

days over a two week period. They went back to the GP with the journal and the GP said he hadn’t realised the extent of Marcus’s sleepiness problem. He referred him to the main city hospital where they had a sleep clinic. After recording his sleep¹³⁴ for a night and a day in the clinic the verdict was that he “probably” had narcolepsy. They might be more certain as he got a bit older. He got lots of suggestions about things to help control his sleepiness, including a trial of some “wake up”

tablets, which made a big difference but had some side effects he didn’t like, like mood swings. He surfed the internet and found some sites with good information and was even able to chat with some other young people with narcolepsy.¹³⁵

As narcolepsy develops with time other symptoms usually (but not always) start to appear which are much more specific to narcolepsy than just sleepiness. The major other symptom is cataplexy which is a sudden loss of muscle power usually in both hands, arms, knees, legs or jaw muscles in the face. The muscles seem to suddenly turn to jelly and this can lead to dropping something or falling down. Cataplexy is usually triggered by laughter, surprise, anger or sadness. It may last just a few seconds or a few minutes. During a cataplexy attack the person is completely aware of what is happening around them but has lost control over some key muscles. (See Case Study

5.2.) Other symptoms that may develop in narcolepsy include sleep paralysis¹³⁶ (which often also occurs in people without

narcolepsy). This paralysis of the muscles happens during transitions between sleep and wake. Hallucinations¹³⁷ during these transitions or while fully awake may also occur with narcolepsy. Sometimes the person with narcolepsy will report especially vivid dreams or nightmares¹³⁸ and their night sleep may have lots of periods of waking up. People with

narcolepsy will fall asleep very quickly during a nap or at night. There is a condition very similar to narcolepsy, but where the only symptom is

Cataplexy seems like nothing to do with a sleep disorder.

134 See Q5.12

135 See Internet site suggestions at the end of this book

136 See Q6.8 about sleep paralysis

137 See Q6.7 about hallucinations

sleepiness, called idiopathic hypersomnia. In teenagers it is very difficult to distinguish the two as in narcolepsy sleepiness may be the only

symptom for years.

Case study 5.2:

Anna was 17 when one day she suddenly collapsed onto the floor when her school friend told her a joke that she thought was hilarious. She was on the floor for about a minute, completely unable to move. She could hear her friend start to panic, thinking she had had a fit of some sort. From one moment to the next she snapped out of it and was able to stand up and felt fine. Neither of them had ever seen anything like it but because she seemed fine they shrugged it off. The next time it happened Anna was playing netball and the match was very close. Unexpectedly she got the ball and was able to put it through the hoop- giving their team a narrow lead. She felt terrific. Suddenly she was down on the floor, just like before, unable to move a muscle. The game stopped and they all crowded around her. Anna couldn’t speak to reassure them. After a few minutes she was back to normal but the captain and coach insisted that she sit out the rest of the game on the bench.

The third time it happened was at home when her younger brother sneaked up on her and gave her the shock of her life. Down she went, just like the other times. Her mother was there and became extremely worried; especially when Anna told her this was the third time in about three weeks. Her mother insisted they go to the doctor. The doctor sent them to a neurological specialist to check out the possibility of epilepsy. There was no sign of epilepsy but the doctor asked Anna lots of questions about her sleeping patterns. Anna said that she had developed a reputation for being a “sleepy head” and was able to fall asleep in all sorts of unusual situations. She

remembered napping a few times in the changing cubicles when trying on clothes in shops. The short naps recharged her and stopped her feeling so sleepy. Her mother commented on how often Anna had started having naps during the day- especially on weekends. The neurologist thought it was possible that the collapses that Anna was experiencing might be cataplexy and explained that this was one symptom of a sleep disorder called narcolepsy. He gave them some literature about narcolepsy and suggested some tests in a sleep clinic. The narcolepsy- cataplexy diagnosis was confirmed in the sleep clinic but Anna decided to try to cope without any tablets for the time being.

She learnt to recognise the situations when a cataplexy attack was most likely and flatten her emotions a bit. This sometimes helped, although her friends learnt to try to “test” her and would tell her funny jokes to try to bring on an episode. The sleepiness was helped a bit with some regular naps during the day.