There's no specific cure for narcolepsy, but you can manage the symptoms and minimise their impact on your daily life.
In mild cases, making some simple changes to your sleeping habits can help. If the symptoms are more severe, you'll usually need to take medication.
Good sleeping habits
There are steps you can take to reduce excessive daytime sleepiness and make it easier to sleep at night. These include:
- taking frequent, brief naps – space them evenly throughout the day; your GP or sleep specialist can help you plan a schedule that fits in with your other activities
- sticking to a strict bedtime routine – aim to go to bed and wake up at the same time every day whenever possible
- relaxing before going to bed – have a warm bath, for example
- keeping your bedroom at a comfortable temperature, quiet and free from distractions
- avoiding caffeine (found in coffee, tea and some fizzy drinks), alcohol and smoking before going to bed
- not exercising too close to bedtime – leave at least two hours between finishing exercise and going to bed
- not eating large, heavy meals before going to bed
Some over-the-counter medications, such as cold and allergy medicines, can cause drowsiness as a side effect.
You should avoid taking these types of medicines during the day if you have narcolepsy as they may make your daytime drowsiness worse.
Speak to your GP or pharmacist if you're unsure about which medicines cause drowsiness. They may be able to recommend non-drowsy alternatives.
Talking to others
As well as being a difficult condition to live with, narcolepsy can be difficult for others to understand.
Some of the symptoms, such as sudden loss of muscle control (cataplexy), can also be frightening for people who are unaware of the condition. You may find it useful to talk to your friends and family about your condition.
Inform your child's teachers if your child is diagnosed with narcolepsy. It's important that teachers are aware of your child's diagnosis so they don't mistake their behaviour for laziness or staying up too late at night.
If you’re diagnosed with narcolepsy there’s no reason why you shouldn’t be able to work, as long as your employer is aware of your diagnosis and they agree to an approach that accommodates your sleep disorder, such as flexible working hours or allowing you to take planned naps. Some careers, however, won’t be suitable for you.
Your GP or specialist may be able to arrange for you to speak to a social worker if they think it may help.
A social worker can offer counselling and support, including advice about careers, any adjustments that can be made at school or work, and any financial or relationship problems you may be having.
You might also find it useful to contact a local or national narcolepsy support group, such as Narcolepsy UK. They'll be able to provide advice about living with narcolepsy and can put you in touch with other people in a similar situation.
A number of different medications are used to treat the symptoms of narcolepsy, although they're not all licensed for narcolepsy and the evidence for their effectiveness in treating the condition isn't always strong.
The availability of some of these medications on the NHS can also differ, depending on the policy of your local NHS authority.
If necessary, your GP or specialist may prescribe a type of medicine known as a stimulant, such as modafinil, dexamphetamine or methylphenidate.
These medications stimulate your central nervous system, which can help keep you awake during the day. They're usually taken as tablets every morning.
Common side effects of stimulants include:
- difficulty sleeping at night (insomnia)
- stomach aches
- weight loss
Speak to your GP or specialist if you experience persistent or troublesome side effects while taking a stimulant. They may be able to prescribe an alternative medicine.
Modafinil has been linked to irregular heartbeats (arrhythmias) and increases in blood pressure, so you'll need to be regularly monitored during treatment to check for these problems.
Sodium oxybate is a medicine that can improve cataplexy and help you sleep at night, which can also reduce daytime sleepiness. However, it's not yet funded by the NHS in many areas.
Sodium oxybate is a liquid medicine that you drink at night in two doses – the first when you get into bed, and the second 2.5 to 4 hours later. You may need to use an alarm clock to ensure you take the medicine at the right times.
You'll need to take the drug two to three hours after having a meal as food can affect the amount of medication absorbed into your body.
You should avoid drinking alcohol while taking sodium oxybate. You should also avoid activities that require mental alertness, such as driving or operating heavy machinery, until at least six hours after taking it.
Common side effects of sodium oxybate include:
Tell your GP or specialist if you're taking sodium oxybate and you experience persistent or troublesome side effects.
Although there's some uncertainty about how effective antidepressants are at treating narcolepsy, they're sometimes used to treat symptoms such as cataplexy, hallucinations and sleep paralysis.
Many different types of antidepressant medication have been used to treat people with narcolepsy, including:
- selective serotonin reuptake inhibitors (SSRIs), such as femoxetine, fluoxetine and citalopram
- serotonin-noradrenaline reuptake inhibitors (SNRIs), such as venlafaxine
- tricyclic antidepressants (TCAs), such as imipramine and clomipramine
These medications are thought to work by altering the levels of certain chemicals in your brain and reducing the amount of dreaming (REM) sleep, which is responsible for many of the symptoms of narcolepsy.
The side effects you may experience will depend on the specific medication you're taking, but general side effects of antidepressants can include:
Most side effects will improve within a few weeks. Speak to your GP or specialist if you're experiencing any side effects that are particularly troublesome or persistent.
You shouldn't stop taking antidepressants suddenly as you may experience unpleasant withdrawal effects. If you want to stop taking your medication, your GP will reduce your dose gradually over the course of a few weeks.