Narcolepsy treatment focuses on managing symptoms, since there is no cure. Drugs are typically chosen based on whether the main problems are excessive daytime sleepiness (EDS), cataplexy, or other REM-related symptoms (sleep paralysis, hallucinations). The treatment of idiopathic hypersomnia (IH) often involves many of the same medications.
General
Some people with narcolepsy are prescribed only one medicine, but for many the best results are obtained using a combination of two or more different drugs. What works best for one patient does not necessarily also work best for another, and you and your doctor will need to work together to find the treatment that is most suitable for you. Following your diagnosis, it is very common to try several different drugs or combinations of drugs before settling on the optimal treatment regime. Similarly, it may take some time to work out the best dose of each drug.
Some of the drugs that are used are licensed for the treatment of one or more symptoms of narcolepsy. Others are not licensed for that use but, because there is evidence that they can be effective, they can nonetheless be prescribed by a specialist physician. Many of the medications for narcolepsy are “shared care” drugs, where the consultant/specialist and GP share the monitoring of the drug.
This summary is intended to be just that – a summary provided for general information on the main types of drugs used to treat Narcolepsy. It is not intended to provide medical advice – always obtain this from your consultant/doctor and never from the internet.
In this resource article, we list many of the medications most commonly used to treat narcolepsy. For many of these, you can find more information by following the link to our webpage devoted specifically to that drug, where in many cases you will also find links to the relevant British National Formulary (BNF) page on the website of NICE, the National Institute for Health and Care Excellence. The NHS also publish a drugs A-Z on their website, although this does not cover some of the narcolepsy drugs.
Drugs for the treatment of excessive daytime sleepiness (EDS)
The drugs used for the treatment of excessive daytime sleepiness are generally “stimulants” and wake-promoting drugs that increase alertness and reduce excessive sleepiness during the day. Sodium oxybate and pitolisant are specialist medications with different modes of action and are dealt with separately below.
- Modafinil
- Methylphenidate hydrochloride (or just methylphenidate)
- Dexamfetamine sulfate (also spelled dexamphetamine sulphate, usually just called dexamfetamine)
- Lisdexamfetamine mesilate
- Solriamfetol
Drugs for the treatment of cataplexy
The drugs used for the treatment of cataplexy, hallucinations and sleep paralysis, include a number of drugs that are most commonly used as anti-depressants (though that is not why they are used to treat narcolepsy). These drugs help to suppress REM sleep.
Selective Serotonin Reuptake Inhibitors (SSRIs e.g. Fluoxetine, paroxetine)
Serotonin noradrenaline Reuptake Inhibitors (SNRI’s e.g. Venlafaxine)
Tricyclic Antidepressants (TCA’s e.g. Clomipramine)
Sodium Oxybate
Considered amongst the most comprehensive treatments, but sodium oxybate (and pitolisant : below) are currently protected by patents, so they are expensive and much harder to access than other medications.
Sodium Oxybate treats both excessive daytime sleepiness and cataplexy, by improving night time sleep consolidation.
Sodium oxybate is taken at night in divided doses (ie the second dose is taken in the middle of the night). The dug comes with very strict safety protocols due to the potential of abuse. The consumption of alcohol is completely forbidden.
Histamine-3 (H3) Receptor Antagonists – Pitolisant
Pitolisant is a newer, non-stimulant option that works to increase histamine release in the brain, and is used to treat both excessive daytime sleepiness and cataplexy. Like Sodium Oxybate, it is currently under patent and therefore expensive. However, it is useful when stimulants are not tolerated.
Orexin Agonists
There are a number of Orexin Agonists in different stages of development and testing by different companies, for example Oveporexton by Takeda. It is impossible to say with any certainty both when these drugs will be available in the UK and equally when funding from the NHS will be available.
Orexin receptor agonists are compounds designed to mimic the effect of Orexin (missing in people with Narcolepsy Type 1) by stimulating the orexin receptor 2 cells, and thereby replacing the Orexin missing in the individual.
Side effects
As with any medication, any of the drugs used to treat narcolepsy can have side-effects. These can take many forms. They may be relatively minor, such as mild headaches or a dry mouth, or much more serious, such as anxiety or depression. You should check the Patient Information Leaflet (PIL) in the packaging of your medication for more details and if you experience any of these side-effects (or any not on the PIL) you should consult your doctor or pharmacist.
You can also report side effects directly via the Yellow Card Scheme. By reporting side effects, you can help improve the safety of this medicine.