There is currently no cure for narcolepsy. However, there are a number of ways that you can manage your symptoms in order to minimise the impact that narcolepsy has on your daily life.
Sleep habits
One of the best ways to manage excessive daytime drowsiness is to take frequent, brief naps that are evenly spaced throughout the day.
Although this may not always be possible in a work or school situation, your GP should be able to devise a sleep schedule that will help your body get into a routine of taking naps.
Also make sure that you stick to a strict bedtime routine. Whenever possible, go to bed at the same time each night, and try to get at least eight hours sleep every night. This will help your body get into a regular routine, and make your night time sleep less disturbed.
Lifestyle
You can make a number of lifestyle changes to help manage your narcolepsy symptoms. These include:
- avoiding stressful situations because stress can make the condition worse
- eating a healthy, balanced diet because this can help to improve your levels of alertness
- not eating heavy meals during the day and before doing any potentially dangerous activities, such as operating machinery
- taking regular exercise and not exercising within three hours of going to bed
It is important to inform the Driver and Vehicle Licensing Agency (DVLA) about a medical condition that might have an impact on your driving ability. They will ask you to complete a medical questionnaire so that a medical advisor can assess your driving and make a decision about your driving licence.
When you have contacted the DVLA, you should see your GP to get advice on whether you should drive or not in the mean time.
Before going to bed, try to relax, for example, by taking a bath. It will also help if you keep the area where you sleep quiet and free of distractions.
Avoid anything that will make it more difficult for you to get to sleep, such as caffeine, which is found in tea, coffee and soft drinks. Avoiding alcohol, cigarettes and some prescription medicines can also help (ask your GP or pharmacist for advice).
If your child has been diagnosed with narcolepsy, inform their school teachers. It is important that your child’s school is made aware of the diagnosis so that they do not mistakenly interpret your child’s behaviour as a lack of sleep or laziness.
Stimulants
If your GP feels that it is necessary, they may prescribe a type of medicine that is known as a stimulant.
Stimulants work by stimulating the central nervous system. They may be prescribed if you have narcolepsy because they can help to keep you awake during the day.
The stimulants most commonly prescribed for narcolepsy are:
Modafinil and dexamphetamine are not recommended for women who are pregnant or breastfeeding.
Stimulants are usually very effective, but they can cause common side effects including:
- nervousness
- irregular heart beats (palpitations)
- headache
- dizziness
- dry mouth
- nausea
- stomach pain
- indigestion
- diarrhoea
- constipation
- tiredness and difficulty sleeping
- pins and needles
- blurred vision
Speak to your GP if you have these side effects while you are taking a stimulant. They may be able to prescribe an alternative medicine for you.
Sodium oxybate
Sodium oxybate is a medicine that treats narcolepsy with cataplexy (temporary muscle weakness) in adults. You may be prescribed it if you are having sleep problems during the night.
If you are prescribed sodium oxybate, you will have to take two doses each 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 that you take the medicine at the right times).
You will need to take sodium oxybate two to three hours after having a meal because eating food can affect the amount of medication that is absorbed into your body.
Avoid drinking alcohol while you are taking sodium oxybate. Tell your GP if you are taking other prescription medications or over-the-counter (OTC) medication.
Sodium oxybate is not recommended for pregnant women and women who are breastfeeding. Inform your GP if you are pregnant or you are planning on getting pregnant.
Avoid doing any activities that require mental alertness, such as driving or operating heavy machinery, until at least six hours after taking sodium oxybate.
Very common side effects of sodium oxybate include:
- nausea
- dizziness
- headaches
Common side effects include:
- blurred vision
- trembling
- vomiting
- diarrhoea
- abdominal (tummy) pain
- nightmares
Uncommon side effects include:
- psychosis – a condition that affects a person’s mind and changes the way that they think, feel and behave
- paranoia – when you are suspicious of people and situations
- hallucinations – seeing or hearing things that are not real
- abnormal thinking
- weight loss
- agitation
- restless legs syndrome – a condition that causes uncomfortable sensations in the legs
Inform your GP if you are taking sodium oxybate and you have severe or troublesome side effects.
Antidepressants
Antidepressants are most commonly used to treat depression, but they can also be used to treat a number of other conditions, including narcolepsy.
However, recent studies have questioned the effectiveness of using antidepressants to treat narcolepsy, with or without cataplexy. Some experts feel that more trials need to be conducted in order to test the usefulness of antidepressants.
Antidepressants may be used if your narcolepsy causes you to have sudden loss of muscle control (cataplexy). See Narcolepsy - symptoms for more information about cataplexy.
Antidepressants should also help to reduce the number of hallucinations that you experience. They can also help to treat temporary muscle paralysis when you fall asleep or wake up. However, antidepressants will not reduce the number of sleep attacks you have, and they will not make you feel more alert and awake, like a stimulant medicine.
Antidepressants that are sometimes used to treat cataplexy are:
- tricyclic antidepressants
- selective serotonin reuptake inhibitors (SSRIs)
Tricyclic antidepressants
The types of tricyclic antidepressant that are most commonly prescribed to treat the symptoms of cataplexy are:
- imipramine
- desipramine
- clomipramine
- protriptyline
Tricyclic antidepressants are not addictive. Common side effects of this type of antidepressant can include:
- constipation
- difficulty urinating
- blurred vision
- dry mouth
- weight gain or weight loss
- drowsiness
- sweating
- lightheadedness
- skin rash
Contact your GP if these side effects do not ease within 7 to 10 days after starting the treatment.
Selective serotonin reuptake inhibitors (SSRIs)
Selective serotonin reuptake inhibitors (SSRIs) are a type of antidepressant that work by increasing the level of a chemical in your brain called serotonin. The side effects of SSRIs are milder than tricyclic antidepressants.
Common side effects of SSRIs include:
- nausea
- headaches
- low sex drive
- blurred vision
- diarrhoea or constipation
- dizziness
- dry mouth
- loss of appetite
- sweating
- feeling agitated
- insomnia (being unable to sleep)
- abdominal (tummy) pain
Speak to your GP if your side effects have gotten worse and showing no signs of returning to normal levels after a few days.
See the Health A-Z topic about Selective serotonin reuptake inhibitors (SSRIs) for more information about this type of medication.
Over-the-counter (OTC) medicines
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 because they are likely to make your daytime drowsiness worse.
If you are not sure which medicines cause drowsiness, speak to your pharmacist or GP. They should be able to advise you about alternative medicines that do not cause drowsiness.
