Narcolepsy
A healthy brain keeps a firm border between sleep and wakefulness. In narcolepsy that border blurs: sleep rolls in during the day and cannot be resisted…
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Medicines commonly prescribed for Narcolepsy
For informational purposes only. Always consult a doctor before using any medicine.
Dosage form: MODIFIED-RELEASE TABLET, 36 mgActive substance: methylphenidateManufacturer: Janssen Cilag S.A.Prescription requiredDosage form: MODIFIED-RELEASE TABLET, 18 mgActive substance: methylphenidateManufacturer: Exeltis Healthcare S.L.Prescription requiredDosage form: MODIFIED-RELEASE TABLET, 27 mgActive substance: methylphenidateManufacturer: Teva B.V.Prescription required
A healthy brain keeps a firm border between sleep and wakefulness. In narcolepsy that border blurs: sleep rolls in during the day and cannot be resisted, night sleep breaks into pieces, and features that belong to the dreaming phase break through into waking life — being unable to move on waking, seeing things on the edge of sleep, losing muscle tone all at once at a joke. It is a rare, lifelong condition that usually starts in the teenage years, and years pass before it is diagnosed, because its first sign is far too easily put down to lack of sleep, laziness or depression.
How it shows in the daytime
The main and essential feature is daytime sleepiness, but not the kind that follows a night awake. It is a pressure of sleep arriving in waves: people fall asleep in meetings, in queues, over a meal, sometimes mid-sentence. The wave cannot be held back by willpower, but half an hour later it recedes on its own.
Hence the detail by which narcolepsy is recognised: a short nap refreshes. Fifteen or twenty minutes is enough to feel clear-headed for an hour or two. With sleep apnoea or with depression, daytime sleep brings no relief.
Between the obvious sleep episodes come microsleeps of a few seconds that the person does not notice: a chunk of the film is missing, the thread of a sentence is lost. Alongside that is automatic behaviour — the person carries on writing, walking, stirring a pan, but consciousness is switched off and afterwards there is a blank: meaningless lines in a notebook, objects in unexpected places. From the outside it all looks like indifference, which is why teenagers get labelled lazy.
Cataplexy: weakness triggered by emotion
This is the most characteristic symptom, and not everyone has it. Cataplexy is a sudden loss of muscle tone set off by a strong emotion. The classic trigger is laughter or a well-placed joke; less often anger, surprise or delight.
Most often the weakness is partial: the jaw drops, speech slurs, the head droops, the knees give way, whatever was being held slips from the hand. Sometimes the person sinks to the floor entirely. An episode lasts from a few seconds to a couple of minutes and passes by itself.
One feature separates cataplexy from a faint and from a convulsive seizure, and it is worth remembering: consciousness is fully preserved. The person hears everything, understands it and remembers it afterwards; they simply cannot answer or move. In a faint and in an epileptic seizure consciousness is lost.
In children the picture is different and harder to recognise: instead of clear collapses there is a mouth left half open, drooping eyelids, the tongue protruding, grimacing and an unsteady gait. It is often mistaken for a neurological disease or for playing the fool.
What happens at night
Contrary to expectation, people with narcolepsy sleep badly at night. Total sleep time is usually normal, but its structure is broken: they drop off almost instantly, go straight into the dreaming phase skipping the usual sequence, and wake many times before morning. Hence both the daytime sleepiness and the sense that the night brings no rest.
Two more phenomena occur at the edges of sleep. Sleep paralysis: on falling asleep or, more often, on waking, the person is fully conscious but cannot move or say a word. It lasts from seconds to a few minutes and does no harm, though it is distressing. Hallucinations on the border of sleep are not voices in the head but a dream that has spilled over: a figure in the room, footsteps, a touch, someone else's presence. They feel entirely real, which is precisely why they frighten.
Dreams in narcolepsy are vivid and often unpleasant, and sometimes the sleeper physically acts them out — talking, flailing, sitting up, catching whoever is sleeping alongside. It is worth telling the doctor: much of this can be treated.
Why it happens
In the hypothalamus sits a small group of cells that make orexin, also known as hypocretin. That substance holds the brain in wakefulness and stops the dreaming phase intruding on the day. In narcolepsy with cataplexy those cells die off almost completely and the orexin disappears, which explains the whole picture at once: the sleep attacks, the cataplexy and the fragmented night.
What destroys the cells is, by all appearances, the person's own immune system. Almost everyone affected carries a particular variant of the tissue-compatibility genes, but on its own it settles nothing: one in five healthy people carries the same variant. The predisposition is needed, but it is not enough.
What sets the process off is only partly known. There is a traceable link with earlier infections — streptococcal infection and influenza caused by the H1N1 virus. A rise in cases after the 2009-2010 vaccination campaign was linked to one particular influenza vaccine that contained a special immune-response booster; the risk was small, that vaccine was withdrawn years ago, and none of this carries over to today's flu vaccines.
Separate from all this is secondary narcolepsy, where the same brain regions have been damaged by something visible: a severe head injury, a tumour, multiple sclerosis, a past encephalitis. It is looked for when sleepiness appears suddenly in an adult and comes with other neurological changes. Heredity counts for little: usually no one else in the family is affected.
How the diagnosis is made
Talking and examining are not enough here: confirming narcolepsy means measuring how a person falls asleep. But the far more common causes of daytime sleepiness are ruled out first — simply not sleeping enough, shift work, sleep apnoea, depression, an underactive thyroid, side effects of medicines.
- A sleep diary for one to two weeks, sometimes with a wristband recording movement: it confirms that the person really is sleeping enough, without which the later tests mean nothing.
- Polysomnography — a night in a sleep laboratory recording brain waves, eye movements, muscle tone, breathing and blood oxygen. Its first purpose is to exclude other sleep disorders.
- The multiple sleep latency test — the next day the person is asked to nap several times while it is measured how long they take to fall asleep and how quickly they enter the dreaming phase. In narcolepsy sleep comes very fast and dreaming starts almost at once, whereas a healthy person needs over an hour. This is the key investigation.
- Measuring orexin in the cerebrospinal fluid by lumbar puncture: a very low level confirms the diagnosis for certain. It is done when the picture is unclear.
What blood tests will not do. Ordinary blood tests do not find narcolepsy; they are there to rule other causes out. The genetic test on its own neither makes the diagnosis nor excludes it. And one practical point: antidepressants distort the result of the sleep latency test, so they are withdrawn beforehand and gradually, to a schedule the doctor sets — not stopped on your own just before the test.
What helps in the daily routine
Medicines work better with a well-ordered day underneath them, and in milder forms the routine sometimes carries it alone.
- Planned short naps: two or three a day of fifteen to twenty minutes, at the same times, without waiting for the wave to arrive. This is the most effective non-drug measure there is.
- A fixed bedtime and waking time, weekends included: shifting the schedule for a couple of days is paid for with a week of sleepiness.
- A quiet hour before bed and a cool, silent bedroom. Heavy late meals and alcohol break up an already fragile night.
- Moving during the day reduces sleepiness and helps with weight, which rises easily in narcolepsy and not only because of inactivity.
- Care with over-the-counter remedies: many cold and allergy preparations are sedating in themselves; ask the pharmacist for versions that are not.
And a word about the people around you. It is worth explaining to teachers and to an employer what is going on: a flexible schedule and somewhere to sleep for twenty minutes can almost always be arranged. Mood suffers often in narcolepsy, and that is not weakness of character: low mood and anxiety are raised with the doctor as calmly as the sleepiness is.
Medicines
Narcolepsy cannot be cured, but most of what it does can be taken away. The choice starts from whatever gets in the way most: the sleepiness, the cataplexy or the broken night.
For sleepiness, medicines that sustain wakefulness are prescribed — both older stimulants and newer agents working by a different mechanism. They are taken in the morning and the dose is built up gradually. Common side effects are headache, nausea, jitteriness, difficulty falling asleep and a rise in blood pressure, so pressure and pulse are monitored.
For cataplexy, medicines from the antidepressant group are used, at doses that suppress the dreaming phase; mood has nothing to do with it. There is also a medicine taken at night in two doses that acts on all three sides of the condition at once: cataplexy, night sleep and daytime sleepiness. Its rules are strict — it cannot be combined with alcohol or sleeping tablets, it requires a gap after eating, and driving is off limits for several hours afterwards.
What must not be done alone. Stopping anti-cataplexy medicines abruptly is dangerous: cataplexy can come back as an avalanche, with attacks running one into another for hours. They are withdrawn only gradually and with the doctor. And something often forgotten: medicines that sustain wakefulness make hormonal contraceptive pills less reliable, so contraception and pregnancy are discussed in advance, since some of these medicines will have to be swapped for that period.
Safety: at the wheel and elsewhere
Narcolepsy is not the end of a driving licence, but it is not something to keep quiet about either. Rules differ from country to country and share one thing: the diagnosis must be declared to the licensing authority and an assessment follows. As a rule driving is permitted once sleepiness is controlled by treatment and the person is under regular review. Concealing the diagnosis puts both life and insurance cover at risk.
Everyday rules are straightforward: never drive when sleepy and never try to make it home, break long journeys with planned naps, do not swim alone, take extra care at the hob, around machinery and at height. An episode that arrives on a ladder or over a pan of boiling water is more dangerous than the episode itself.
Call an ambulance (in Spain, Italy, Portugal, Poland and Ukraine the single European number is 112) if:
- the person cannot be woken and breathing is slow or irregular — particularly if the night-time medicine was taken with alcohol or a sedative;
- cataplexy attacks run one after another and the person has been unable to move for hours;
- convulsions, weakness in an arm or leg, disturbed speech, severe headache, double vision or confusion appear: that is no longer narcolepsy.
Online consultation with a doctor
A remote appointment suits the first step, when it is unclear whether this is narcolepsy or something more common. The doctor will work through it in order: how much you actually sleep, whether a short nap refreshes you, whether weakness comes on with laughter, whether there is snoring and pauses in breathing, what you are taking. From those answers they will say what to check first and whether a referral to a sleep laboratory is needed, because that is where the diagnosis is made and no conversation replaces it.
Once the diagnosis is in place, online works well for the running business: going through the sleep diary, fitting naps into the timetable, discussing side effects, contraception and planning a pregnancy, and how to explain things to an employer or a school. The limits are clear: polysomnography and the sleep latency test cannot be done through a screen, and neurological changes or someone who cannot be roused call for an ambulance.
This material is for information only and does not replace medical advice.
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