Probably everyone reading this will have or know someone with a disabilty of some kind. The list of disabilities is endless.
I myself was born with slight Cerebral Palsy which later in life contributed to me developing Epilepsy. Although my seizures are controlled by medication I sltill suffer the odd Focal or Partial seizure (though i haven’t had any for weeks).
My Cerebral Palsy is giving me more cause for concern at the moment as I keep loosing my balance.
Fortunately because of my positive mind I think I try not to let my disabilities get me down .
Narcolepsy is a rare neurological condition that affects the brain’s ability to regulate the normal sleep-wake cycle. Narcolepsy is estimated to affect about 1 person in 2,500. That means that in the UK there are approximately 30,000 people who have narcolepsy, though it is believed that the majority have not been diagnosed.
Normal sleep takes the form of a regular pattern of REM (Rapid Eye Movement) and non-REM stages. During a fully night’s sleep, every 90 minutes or so a normal sleeper experiences several minutes of REM sleep, during which dreaming occurs, before switching back to non-REM sleep.
Fragmented night-time sleep
In people with narcolepsy, however, the nocturnal sleep pattern is much more fragmented and typically involves numerous awakenings. When falling asleep at night, or during the day, people with narcolepsy may rapidly enter REM sleep, leading to unusual dream-like phenomena such as hallucinations.
Daytime sleepiness and cataplexy
The most common symptom of narcolepsy is excessive daytime sleepiness (EDS), brought about by an irresistible need to sleep at inappropriate times throughout the day. Many people with narcolepsy also experience cataplexy, a temporary involuntary loss of muscle control, usually in response to strong emotions.
It is usually the onset of EDS that is the first sign that a person has narcolepsy. However, there are other conditions that can cause EDS and it is important that medical advice is obtained as soon as possible (see Seeking medical help).
Living with narcolepsy
Effects on daily life
Narcolepsy can have an effect on almost all aspects of your daily life including education, employment and your ability to drive, and also relationships and emotional health. Although there is at present no cure for narcolepsy, and some treatments are often only partially effective, there are strategies that can help you to manage your symptoms and enable you to lead as full a life as possible.
Some suggestions …
Take a look at our suggestions for dealing with some of the commonest issues that people with narcolepsy face:
Because narcolepsy is a rare condition, in normal life many people with narcolepsy may never meet anyone else with the condition. That does not mean that you are alone.
Narcolepsy UK encourages people with narcolepsy to interact with each other and to share their experiences. Through social media, events and our conferences, we aim to help people with narcolepsy support each other. You can also get in touch with us directly, either through the Contact Us page of this website, or by calling our helpline.
Supporting a person with narcolepsy
Many ways to help
If you know someone who has narcolepsy, for instance if you are a parent or other family member or friend, or a colleague or employer, there are many ways in which you can support that person and help them deal with the effects of their condition.
As a parent, for instance, you will soon appreciate not only the direct effects that narcolepsy has, as a result of symptoms such as excessive daytime sleepiness and cataplexy, but also the indirect effects on mental and emotional well-being that can result from the diagnosis of such a debilitating lifelong condition.
Teachers can make a difference
If you are involved in the education of a person with narcolepsy, please visit our Narcolepsy and Education page to read our suggestions for helping to enable a student with narcolepsy to realise their full potential, and to download our guides to Narcolepsy and Education and our Narcolepsy Guide for Teachers.
Support at work is critical
Similarly, if you have a colleague or employee with narcolepsy, please visit our Narcolepsy and Work page to learn how you can help that person be a productive member of your team, and to download our guides to Narcolepsy and Work and our Narcolepsy Guide for Employers.
Narcolepsy in young people
Onset is often in childhood or early adolescence
Narcolepsy can occur at any stage of life, but the onset is often during childhood or early adolescence. The link between narcolepsy and the Pandemrix swine flu vaccine has led to an upsurge in the number of cases of narcolepsy amongst young people.
Challenges for young people
Narcolepsy in young people presents particular challenges in relation to education and to home and family life. Symptoms of narcolepsy, such as cataplexy and hypnagogic hallucinations, can be terrifying, especially for young children, and excessive daytime sleepiness and its effects may be misinterpreted as laziness or lack of intelligence.
Families have an important part to play …
For family members, it is critically important to understand what narcolepsy is and what impact it has upon the young person with narcolepsy. Only then can they provide the practical and emotional support necessary to enable the young person to realise their full potential.
… and teachers too
Teachers and other education professionals need to understand the condition too, so that they can take appropriate measures, such as allowing time for naps during the day and ensuring that the young person is given additional time for exams
You are not alone!
For young people themselves, getting to know others in the same situation can be enormously beneficial. Through social media, events and our conferences, young people with narcolepsy can make friendships that help them deal with the consequences of their condition, and also give them the chance to help others in a similar situation.
“It was lovely for our daughter to be able to talk about her illness at the network support meeting with people who really understood. She seemed to blossom.”
Narcolepsy is a neurological disorder that causes episodes of unpreventable sleep. These episodes can occur frequently and at inappropriate times, for example while a person is talking, eating or driving. Although sleep episodes can occur at any time, they may be more frequent during periods of inactivity or monotonous, repetitive activity.
Narcolepsy occurs when the part of the brain that regulates sleep and wakefulness does not function properly, causing sudden spells of Rapid-Eye-Movement (REM) sleep – the dreaming state of sleep. These “sleep attacks” last from a few seconds to 30 minutes, regardless of the amount or quality of night time sleep. These attacks result in episodes of sleep at work and social events, while eating, talking, driving, or on other similarly inappropriate occasions.
Symptoms generally begin between the ages of 15 and 30. The four classic symptoms of the disorder (although not all sufferers will have all four) are:
Excessive daytime sleepiness.
Cataplexy: a striking, sudden episode of muscle weakness triggered by high emotions. Typically, the patient’s knees buckle and may give way upon laughing, elation, fear, surprise or anger. In other typical cataplectic attacks the head may drop or the jaw may become slack. In severe cases, the patient might fall down and become completely paralysed for a few seconds to several minutes. Reflexes are abolished during the attack.
Sleep paralysis: the patient suddenly finds himself unable to move for a few minutes, most often upon falling asleep or waking up.
Hypnagogic hallucinations: dream-like auditory or visual hallucinations, while dozing or falling asleep.
Disturbed night time sleep, including tossing and turning in bed, leg jerks, nightmares, and frequent awakenings may also occur.
The development, number and severity of symptoms vary widely among individuals with the disorder but excessive sleepiness is usually the first and most prominent symptom of narcolepsy.
It is a frequent disorder, the second leading cause of excessive daytime sleepiness diagnosed by sleep centres after sleep apnea. Studies on the epidemiology of narcolepsy show an incidence of 0.2 to 1.6 per thousand in European countries, Japan and the United States.
In many cases diagnosis is not made until many years after the onset of symptoms. In one recent study, it took on average 14 years from the onset of symptoms to time of diagnosis. This is often due to the fact that patients consult a physician only after many years of excessive sleepiness, assuming that sleepiness is not indicative of a disease. Early diagnosis and treatment, however, are important to the physical and mental well-being of the sufferer, since studies have shown that even treated narcoleptic patients are often markedly psychosocially impaired in the area of work, leisure, interpersonal relations, and are more prone to accidents.
Narcolepsy can be diagnosed on the basis of a history of typical episodes and the results of an overnight sleep study with a multiple sleep latency test. The sleep study checks for other explanations that could account for daytime sleepiness, such as sleep deprivation, sleep apnoea and depression. The test is done in a sleep laboratory, where brain waves, eye movements, muscle activity, heartbeat, blood oxygen levels and respiration are monitored electronically with a device called a polysomnograph. The multiple sleep latency test is performed after an adequate night’s sleep has been demonstrated clearly. Usually, it is done after a sleep study.
The test consists of four 20-minute opportunities to nap, which are offered every two hours throughout the day. Patients with narcolepsy fall asleep in approximately five minutes or less, and transition in REM sleep during at least two of the four naps. In contrast, normal subjects take an average of 12 to 14 minutes to fall asleep, and show no REM sleep.
There is at this time no cure for narcolepsy and there is no way to prevent narcolepsy but the symptoms can be controlled with behavioural and medical therapy. Excessive daytime sleepiness may be treated with stimulant drugs or with the drug modafinil. Cataplexy and other REM-sleep symptoms may be treated with antidepressant medications.
At best, medications will reduce the symptoms, but will not alleviate them entirely. Also, many currently available medications have side effects.
Lifestyle adjustments such as regulating sleep schedules, scheduled daytime naps and avoiding “over-stimulating” situations may also help to reduce the intrusion of symptoms into daytime activities.
People with narcolepsy have a significantly increased risk of death or serious injury resulting from motor-vehicle or job-related accidents, and they must take care to avoid situations where such accidents might occur.
Although it is a life-long condition, most individuals with the narcolepsy enjoy a near-normal lifestyle with adequate medication and support from teachers, employers, and families. If not properly diagnosed and treated, narcolepsy may have a devastating impact on the life of the affected individual, causing social, educational, psychological, and financial difficulties