How is narcolepsy treated?
There is at present no cure for narcolepsy, but the condition is manageable.
Because narcolepsy is believed to be caused by the loss of certain cells within the brain, and there is currently no way to replace those cells, narcolepsy is a lifelong condition. Treatment is therefore focused on controlling the symptoms of narcolepsy in a way that allows the patient to live as normal a life as possible.
There are several treatments available to help manage the symptoms of narcolepsy. What works best for one patient does not necessarily also work best for another, and your doctor will try to find the treatment that is most suitable for you. This may involve just one drug, or it may involve two or more, to treat different aspects of the condition (eg excessive daytime sleepiness and cataplexy).
The following drugs are amongst those that are used. Some are licensed for the treatment of one or more symptoms of narcolepsy, while others are not licensed but are used “off label”, for which they can only be prescribed by a specialist physician:
Modafinil for excessive daytime sleepiness
Dexamphetamine sulphate for excessive daytime sleepiness
Methylphenidate for excessive sleepiness
Sodium Oxybate (Xyrem®) for cataplexy, hallucinations, disturbed sleep and excessive daytime sleepiness
Clomipramine for cataplexy
Antidepressants (including selective serotonin reuptake inhibitors [SSRIs]) for cataplexy
Pitolisant (Wakix®) is an oral drug that acts on H3 histamine receptors. It was approved by the European Medicines Agency in March 2016 and we understand it has been received by some patients on a “named patient basis”. Whilst it is now commercially available (licensed for use) in the UK, local access may be variable. Pitolisant is said to be better tolerated than modafinil and to have a positive effect on cataplexy. In addition, because it is to be taken by mouth once a day, it offers a simpler and less disruptive dosing schedule than that of sodium oxybate.
The Pharmacy department at Guy’s and St Thomas’ Hospital has produced a series of Patient Information Leaflets for their patients that cover a number of widely used narcolepsy drugs. These leaflets can be found through the following links:
- methyl phenidate
- sodium oxybate
Access to the best treatments
For many patients whose symptoms include cataplexy, sodium oxybate has been found to be the most effective treatment. However, that drug is currently very expensive and many people are refused treatment with it. Narcolepsy UK campaigns for greater access to the best medication for people with narcolepsy, irrespective of the cost.
Lifestyle steps can help too
As well as pharmacological treatments, there are also symptoms can be managed through simple measures, many of which are beneficial for everyone, but particularly helpful for people with narcolepsy. Things like having a regular routine and going to bed and getting up at the same time, not drinking coffee late at night, taking planned naps during the day, eating a healthy diet and leading an active life, with plenty of exercise, can all help counteract the effects of narcolepsy.