Narcolepsy - Treating narcolepsy

There is 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 will 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, including:

• taking frequent, brief naps evenly spaced 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 go to bed and wake up at the same time every day when possible
• trying to relax before going to bed – for example, by having a warm bath
• keeping the area where you sleep a comfortable temperature, quiet and free of distractions
• avoiding caffeine (found in tea, coffee and some fizzy drinks), alcohol and smoking before going to bed
• exercising regularly, but stopping several hours before you go to bed
• not eating large, heavy meals before going to bed

Some over-the-counter (OTC) medications, such as cold and allergy medicines, can cause drowsiness as a side effect. Therefore, if you have narcolepsy, avoid taking these types of medicines during the day because they may make your daytime drowsiness worse.

Speak to your GP or pharmacist if you are unsure 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 a difficult condition for others to understand. Some of the symptoms, such as cataplexy (sudden loss of muscle control), can also be frightening for people who are unaware of the condition. Therefore, you may find it useful to talk to your friends and family about your condition.

If your child has been diagnosed with narcolepsy, you should inform their school. It's important that teachers are aware of the diagnosis so they do not mistake your child’s behaviour as laziness or staying up too late at night.

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. These groups can offer advice about living with the condition and can put you in touch with other people in a similar situation.

Medication

A number of different medications are used to treat the symptoms of narcolepsy, although these are not all licensed for narcolepsy, and the evidence for their effectiveness in treating the condition is not always strong.

The availability of some of these medications on the NHS can also differ, depending on the policy of your local NHS authority.

Stimulants

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 are usually taken as tablets every morning.

Common side effects of stimulants include:

• headaches
• nausea
• nervousness
• difficulty sleeping at night (insomnia)
• stomach aches
• irritability
• 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 in particular has also been linked to irregular heartbeats (arrhythmias) and increases in blood pressure, so you will need to be regularly monitored during treatment to check for these problems.

Sodium oxybate

Sodium oxybate is a medicine that can improve cataplexy and help you sleep at night, which can also reduce daytime sleepiness. However, it is not yet funded by the NHS in many areas.

Sodium oxybate is a drinkable solution that is taken in two doses at night – the first when you get into bed, and the second two-and-a-half to four hours later (you may need to use an alarm clock to ensure you take the medicine at the right times).

You will need to take sodium oxybate two to three hours after having a meal, because food can affect the amount of medication absorbed into your body.

While taking sodium oxybate, you should avoid drinking alcohol. You should also avoid activities that require mental alertness, such as driving or operating heavy machinery, until at least six hours after taking the medication.

Common side effects of sodium oxybate include:

• nausea
• dizziness
• headaches
• diarrhoea
• bedwetting
• vomiting
• weight loss
• blurred vision

You should tell your GP or specialist if you are taking sodium oxybate and experiencing persistent or troublesome side effects.

Antidepressants

Although there is some uncertainty about how effective they are in treating narcolepsy, daily antidepressant tablets or capsules are 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. 

The side effects you may experience will depend on the specific medication you are taking, but general side effects of antidepressants can include:

• feeling agitated, shaky or anxious
• feeling sick
• dry mouth
• slight blurring of vision
• constipation
• dizziness
• drowsiness
• problems sleeping (insomnia)
• sexual dysfunction, such as erectile dysfunction in men or difficulty achieving orgasm

Most side effects will improve within a few weeks. Speak to your GP or specialist if you are experiencing any side effects that are particularly troublesome or persistent.

You should not 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 a few weeks.