Well-being plan

Here are a few simple tips that can help ensure maximum health and well being. Although many of these are worded for the non-narcoleptic population, patients with narcolepsy may also benefit:

To promote sleep and reduce disturbed sleep:

• Try to go to bed and get up at the same time every day, including at weekends to help regulate your sleep-wake cycle and make sure that your bedroom is warm, dark, quiet and comfortable to encourage sleep
• Avoid working or watching TV in bed and only use your bed for sleep and sex so you associate your bed with sleep only
• Mentally unwind before going to sleep by, for example, taking a hot bath
• Avoid caffeine at night as this will prevent you getting to sleep

To control excessive sleepiness:

• Planned naps of around 15-30 minutes every day may help - particularly between 2pm and 4pm and especially before events where you need to be alert
• Avoid large meals and alcohol during the day as they can induce sleep
• Some people living with narcolepsy benefit from avoiding refined carbohydrates
• Fresh air and light exercise or exposure to bright light can help you keep alert during the day
• Eat meals at regular times
• Break up long tasks and plan naps when concentration starts to drop

To control hallucinations and sleep paralysis:

• Hallucinations and sleep paralysis, although harmless can be very frightening
• Reducing stressful events that may act as a trigger and improving your sleep habits may help in controlling these symptoms
• In some cases, psychotherapy may help

Looking after your mental health:

• Frustration, low mood and even depression can commonly occur in patients suffering from narcolepsy. The risks can sometimes be minimised by talking openly about your condition to your GP or friends and family. This helps the isolation many patients feel.
• Alternatively, go to our members zone to share experiences with other people living with narcolepsy that can understand more what you are going through