Treatment involves two complementary approaches. Some sleep specialists will also ask to take a lumbar puncture to measure the concentration of hypocretin in your cerebrospinal fluid. The following day, it’s likely that you will perform a multiple sleep latency test (MSLT), which measures how easily you fall asleep during the daytime and looks for the unusual sleep architecture characteristic of narcolepsy, notably rapid eye movement or dreaming sleep within minutes of falling asleep. Your GP will need to refer you to a specialist sleep centre for further tests.Īt the sleep centre, you will stay overnight for a sleep study so that the specialist can monitor the activity of your brain while you sleep. If you have cataplexy, you should emphasise this – with a video, if possible – as it is the most unusual of narcolepsy’s many symptoms. If you think you may have narcolepsy, you will need to describe all your symptoms to your GP and present your score on the Epworth Sleepiness Scale. With a diagnosis, however, with routine visits to a sleep specialist, effective medication, support from family and friends, and reasonable adjustments at school, college, university or work, it is possible to reduce the disability caused by narcolepsy. Narcolepsy is a spectrum disorder, so the combination and extent of symptoms will vary from one person to the next and this can make it hard to diagnose. In narcolepsy, the prevalence of obesity is twice that of the general population, most likely owing to a drop in the metabolic rate that occurs following the loss of hypocretin. This can be unsettling and affect confidence and self-esteem. When people with narcolepsy are tired, they can exhibit automatic behaviour, losing consciousness but still able to perform a routine tasks as if awake. Such disruption to the sleep cycle may account for the poor memory reported by many people with narcolepsy. Sleep fragmentation is common, with vivid dreams and multiple awakenings drastically reducing the quality of night-time sleep. This state is not dangerous and will usually resolve in a matter of minutes, but it can be extremely alarming and is often accompanied by terrifying hallucinations. Many people with narcolepsy will also experience sleep paralysis on a regular basis, waking up to find themselves unable to move. For many people whose cataplexy cannot be controlled by medication, however, the repeated loss of control - sometimes dozens of times a day - is likely to affect confidence and self-esteem. The experience is not painful and recovery usually occurs in less than a minute with no obvious ill effects. Importantly, a person experiencing cataplexy will remain completely conscious throughout an attack (in contrast to sleep or epilepsy). It may cause the lips to quiver and eyelids to close, the jaw to drop and the head to slump, slurred speech and the complete inability to vocalise, paralysis of skeletal muscles and eventual collapse. The severity and duration of a cataplectic attack varies widely between people but also from one situation to the next. The majority of people with narcolepsy will also experience cataplexy, a sudden loss of muscle tone triggered by intense, often positive emotions such as laughter or surprise. The pressing need to sleep usually builds over minutes, but some people with narcolepsy can also experience “sleep attacks”, where the transition from wake to sleep occurs without warning. Idiopathic hypersomnia (IH) shares some of the same symptoms as narcolepsy, although its cause is not yet known.Īll people with narcolepsy experience excessive daytime sleepiness (EDS), characterised by persistent and overwhelming sleepiness during the daytime. The damage to this important signalling system is thought to be the result of an autoimmune attack arising from a combination of genetic predisposition and an insult to the immune system (by a pathogen like the influenza virus or, in rare cases, vaccination). In most cases of narcolepsy, there is a loss of neurons that produce hypocretin (also known as orexin), a neurotransmitter that plays a central role in the regulation of alertness, motivation and mood. There is currently no cure, although medication and lifestyle changes can make life more manageable. Narcolepsy is a disability that affects around 1 in 2500 people or approximately 30,000 people in the UK. Narcolepsy is a chronic neurological disorder characterised by excessive daytime sleepiness and often an array of additional symptoms, including (but not limited to) cataplexy, sleep paralysis, hallucinations, sleep fragmentation, vivid dreams, poor memory, automatic behaviour and obesity.
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