Narcolepsy
Narcolepsy is a neurological disorder that can cause daytime drowsiness, falling asleep suddenly, and sudden muscle weakness.
What is narcolepsy?
Narcolepsy is a neurological disorder that can cause daytime drowsiness, sleep attacks (falling asleep suddenly or without warning), and cataplexy (sudden muscle weakness).
At Welbeck, narcolepsy is investigated by leading neurologists in our Sleep Centre.
The condition is rare, affecting approximately 30,000 people in the UK. It’s often distressing because it can severely disrupt your daily life, affect your ability to work and drive, and put strain on your relationships.
The condition is divided into 2 types: type 1 and type 2.
Type 1 narcolepsy
Around 20% of people with narcolepsy have type 1. People with type 1 narcolepsy experience cataplexy — a temporary loss of muscle control, which can cause weakness in your facial muscles, resulting in problems from slurred speech, through to weakness in your knees and total collapse. Cataplexy is often triggered by strong positive emotions, such as laughter, and occasionally by others, such as surprise or anger.
Type 2 narcolepsy
The majority of people with narcolepsy have type 2, which is where you don’t have cataplexy.
Paediatrics
We offer appointments to paediatric patients aged 12 to 18. For full information on our paediatrics service, please visit our main Paediatrics page.
More information
The symptoms of narcolepsy vary from person to person. They can develop over time or come on suddenly. They can also present during the daytime and at night.
The main symptoms of narcolepsy include:
excessive daytime sleepiness — feeling drowsy throughout the day, which can affect your ability to concentrate
sleep attacks — falling asleep without warning, for anywhere from a few seconds to several minutes at a time
cataplexy
sleep paralysis — waking up and being unable to move or speak for a few seconds
sleep-related hallucinations — seeing things that aren’t there when falling asleep or waking up
If you have narcolepsy, you may also experience other symptoms as a result of the condition. These can include:
restless or broken sleep
depression
automatic behaviours — continuing a task you were doing before you fell asleep, while you are asleep
difficulty maintaining concentration or attention
It’s not known precisely what causes narcolepsy, but some factors are believed to contribute to the condition.
Type 1 narcolepsy is thought to be down to low levels or an absence of a brain chemical called hypocretin (also known as orexin). The neurons (nerve cells that send messages to your body) that use hypocretin are housed in a part of your brain called the hypothalamus and are responsible for controlling and regulating sleep.
It’s thought that hypocretin deficiency is caused by your immune system attacking either the neurons that make and use hypocretin, the hypocretin itself, or both.
Risk factors
More research is needed, but factors that may increase your risk of narcolepsy or cause an autoimmune problem that can lead to the condition include:
a genetic predisposition — over 95% of people with type 1 narcolepsy have a genetic marker that influences how our immune system works
exposure to a particular immune trigger, such as a viral or bacterial infection
You’ll see a consultant for an initial consultation. During this appointment, they’ll ask you about your medical history and symptoms. They may also conduct a physical exam.
They’ll likely want to analyse your sleep through 1 or more formal sleep studies. A sleep study monitors various data points such as your breathing, heart rate, and eye movements while you sleep. What a sleep study involves varies depending on the type, but it’s possible for one to be performed at home. Your consultant will recommend the most appropriate study based on your symptoms.
To make an accurate diagnosis, they may also recommend a test to measure your levels of hypocretin in your spinal fluid.
Once they know whether you have narcolepsy, and if so, which type, they’ll be able to suggest the best treatment option for you.
It’s not possible to prevent narcolepsy; however, treatment can help your symptoms feel more manageable.
You may also be able to ease your symptoms by:
taking frequent, short planned naps
following a strict bedtime routine where you go to bed and wake up at the same time every day
maintaining good sleep habits, for example, keeping your bedroom cool and dark
avoiding alcohol and sedative drugs
joining support groups
talking to mental health professionals
Narcolepsy that isn’t treated and managed can harm your physical health if you fall asleep while driving or cooking. This is why your risk of injury is higher when you have narcolepsy.
People with narcolepsy are more at risk of obesity, which comes with other potential complications such as heart disease, strokes, diabetes, and certain cancers.
Narcolepsy can also have an impact on your mental wellbeing. The condition can disrupt all areas of your life, from your work to your relationships. This is another reason why it’s important to seek treatment and support for the condition.
Narcolepsy isn’t curable, but there are treatments that can help manage the symptoms and lessen their impact on your daily life.
Treatment usually involves medications, including:
modafinil
amphetamine-based stimulants
sodium oxybate
antidepressants
other wake-promoting agents (stimulants)
Your consultant will also recommend lifestyle changes and habits that could help.
At Welbeck, our sleep specialists are experts in their field and are dedicated to providing world-class care to every patient.
With access to colleagues across other specialties, our consultants are also able to refer within the Welbeck ecosystem if required to ensure you receive the treatment you need as quickly as possible, all under one roof.
All appointments, testing, treatment, and follow-up appointments take place within our state-of-the-art facilities, enabling us to deliver accurate diagnostics and advanced treatments.
Your health is important to us, so we strive to offer same-day appointments whenever possible.
Our consultants are recognised by the major health insurance companies. If you have private health insurance, your treatment at Welbeck can begin once you have obtained authorisation. We also provide care to self-paying patients. Learn more about the different payment options at Welbeck.
Get in touch today to book an appointment.
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Frequently asked questions
For most people, narcolepsy begins between the ages of 10 and 30.
Narcolepsy is a permanent condition that doesn’t go away once it develops. The good news is that it doesn’t get worse as time goes on.
Yes, some people with narcolepsy also have other conditions, such as sleep apnoea (when you stop breathing during sleep) and REM sleep behaviour disorder (when you act out unusual behaviours during sleep, such as kicking or laughing).
If you take steps to treat your narcolepsy and it’s well controlled, you can usually continue to drive. However, this will need to be regularly reviewed.