For people with narcolepsy, travelling on public transport may present particular difficulties: getting off at the right stop, making a connection, etc etc. Many train and bus companies offer assistance that can be really useful to people with narcolepsy. For train services, all rail operators participate in the Passenger Assist scheme, a national system that […]
Language is important, especially when it comes to the way we talk to and about people with health conditions like narcolepsy. In 1992, the American Psychological Association issued guidelines for its scientific journals to encourage the use of language that put people before their medical condition or disability. For example, “schizophrenics” became “people with schizophrenia”, “epileptics” were […]
What is it? Cataplexy is the term given to sudden muscular weakness triggered by strong emotions such as laughter, anger and surprise. The loss of muscle tone that occurs may range from a just-perceptible weakening of the facial muscles through weakness at the knees, to total collapse on the floor. Speech may be slurred, and […]
What is it? EDS involves an irresistible urge to sleep at inappropriate times during the day. People with narcolepsy may also suffer sleep attacks during which they fall asleep quite involuntarily, or may suffer ‘micro-sleeps’, very often without being conscious of having slept. EDS can cause other symptoms such as mental ‘fuzziness’, poor memory, problems […]
In the past, it was common for people with symptoms of narcolepsy to go undiagnosed, sometimes for many years. With greater recognition of the condition, and greater awareness amongst the medical profession, the situation is improving, but misdiagnosis of narcolepsy, and thus inappropriate treatment, is still relatively common. Epworth Sleepiness Scale Patients who suspect they […]
There is at present no cure for narcolepsy, but the condition is manageable. Narcolepsy is usually caused by the loss of certain cells within the brain (see What causes narcolepsy?). As there is currently no way to replace these cells, narcolepsy is a lifelong condition. Treatment is therefore focused on controlling the symptoms of narcolepsy in […]
Here are a few simple tips that can help ensure maximum health and well-being. Many of these are applicable to everyone, but people with narcolepsy may find them particularly beneficial. To promote night-time sleep and reduce disturbed sleep: To control excessive sleepiness: To control hallucinations and sleep paralysis: Looking after your mental health: Join us:
Seeking medical help when you first develop symptoms of narcolepsy can be very daunting. Visit your GP Your first point of contact should be with your regular GP who will take a history and decide what the next steps are. Getting specialist help If your GP suspects you are suffering from narcolepsy, they should refer […]
Destruction of brain cells causes narcolepsy It is now generally believed that, in most cases at least, narcolepsy is an auto-immune disorder, caused by the destruction of certain cells within the brain by the body’s own immune system. Those cells are responsible for the production of a peptide molecule called hypocretin (sometimes also called orexin). […]
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. Narcolepsy is a disability that affects around 1 in 2500 people or approximately 30,000 people in the UK. […]
