We asked sleep expert Peter Venn, a consultant at the Sleep Disorder Centre, East Grinstead, what he would want to know if he had narcolepsy.
Why do I have narcolepsy?
Narcolepsy is not really an inherited condition and its cause is unknown. One theory is that the body’s immune system is attacking its own tissues. People with narcolepsy have lower levels of the brain chemical hypocretin, which stimulates wakefulness.
What’s happening to me during sleep attacks?
Sleep attacks occur because the normal switch the brain makes between wakefulness and sleep is not working properly. We all experience stages of rapid eye movement (REM) sleep when we dream at night, but in narcolepsy, REM sleep switches on when it shouldn’t. Sleep attacks occur once every two to four hours and last from a few seconds to many minutes. They're more likely to occur when you’re performing boring or repetitive tasks or sitting comfortably in a quiet environment.
What are the other symptoms?
Narcolepsy makes you feel constantly tired, and you need regular power naps during the day to recharge the batteries. At night you’ll find it difficult to stay asleep and will wake frequently.
As well as excessive daytime sleepiness, you may experience cataplexy, hallucinations and sleep paralysis. Again, these are caused by dream states of REM sleep that should normally be switched off. They can last from a few seconds to a few minutes.
Cataplexy is sudden muscle paralysis often triggered by emotion, especially laughter (see 'Symptoms'). Hallucinations and sleep paralysis occur just before sleep or just after waking and can be terrifying.
Can I use willpower to resist sleep attacks?
Yes but only to a very limited extent. You will have to learn to live with and manage your condition.
So how can I manage my narcolepsy?
Your GP may prescribe drugs that stimulate the brain, to reduce the incidence of cataplexy (see
'Treatment'). However, daytime sleepiness will usually still occur. Learn to take power naps at intervals during the day, like after lunchtime or before going out at night. If you sit down for five minutes in a comfortable chair you’ll almost certainly go straight to sleep. Sleep tends to be refreshing and recharges the batteries for a while. Organise your day around these naps and discuss with your employer how to accommodate this.
Can I drive?
The DVLA (Drivers and Vehicle Licensing Agency) will not allow you to drive with uncontrolled symptoms, but may allow you to drive again if your symptoms are controlled, provided you have regular medical reviews. It’s an offence to drive without informing the DVLA about your condition.
How serious is my condition?
Narcolepsy is a lifelong condition requiring treatment. However, it doesn’t shorten life and with treatment you can lead a long and active life.
