If your sleep-wake cycle is disturbed and impacts on your ability to function during the day, you may have asked yourself, “Do I have narcolepsy?” Read on to find out what it is, what the symptoms are and if there is anything you can do to improve your sleep.
Firstly, what is narcolepsy?
It is classed as a neurological disorder and affects the brain’s ability to control the sleep/ wake cycle. Those with narcolepsy often have disturbed sleep, with frequent waking during the night. You may find that you feel rested when you wake, but soon feel extremely tired during the day, to the point where you might fall asleep during an activity such as driving, eating or talking.
If undiagnosed or untreated, it can be serious and disruptive to all aspects of your life. The sudden onset of symptoms when they present in extreme ways is also referred to as “attacks”.
There are 2 types of narcolepsy, simply known as type 1 and type 2 narcolepsy.
Type 1 was previously known as narcolepsy with cataplexy (a sudden loss of muscle control and weakness that can cause falls), while type 2 narcolepsy does not have cataplexy as one of its symptoms, and symptoms are generally less severe. People with type 2 narcolepsy also have normal levels of hypocretin.1
Causes of narcolepsy
A major cause of narcolepsy is an insufficient amount of the chemical hypocretin, also known as orexin, which is a chemical in the brain that regulates wakefulness.
This does not cover all causes of narcolepsy though, and some reasons for developing this disorder are unclear.
Some suggestions for the causes of narcolepsy include:
- Hormonal changes, which could be either in puberty or menopause
- Acute psychological stress
- An infection such as swine flu, or being vaccinated with Pandemrix, which is used to treat swine flu.2
Signs and symptoms of narcolepsy
The four main symptoms of narcolepsy are:
- Excessive daytime sleepiness, also known as EDS.
- Sleep paralysis
- Sleep-related hallucinations, which can be hypnagogic or hypnopompic (when falling asleep or waking respectively)
Management and treatment for narcolepsy
The easiest way to manage narcolepsy is to make positive changes to your sleeping habits. They can include:
- Strict bedtime routine, going to bed and waking at the same time
- Relaxing before bed, for example, having a warm bath and reading a book
- Having a good sleeping environment, like having the room at a good temperature. The Sleep Foundation recommends for most people this will be about 65 degrees Fahrenheit (about 18.3 degrees Celsius). Also, that it is free from distractions and quiet3
- Not exercising too near to bedtime. There should be at least 2 hours between finishing your exercises and getting into bed
- Not eating large meals just before bed
- Avoiding caffeine, alcohol or smoking before bed
- Some medicines from the pharmacy can make you drowsy, so if possible, avoid taking these during the day. If you are unsure about which over-the-counter medicines can make you drowsy, speak to your doctor or pharmacist
- For some, taking strictly timed naps during the day at regular intervals can prevent sudden sleepiness and promote better sleep at night
Talking to others can be helpful in managing narcolepsy. The condition can be difficult to live with and can also be difficult for others to understand. The sudden onset of symptoms can also be scary for others to witness. Speaking to family and friends about your narcolepsy can help to alleviate their anxieties and allow them to support you too. You also want to consider talking to your employer about your condition so that allowances can be made. Some careers will not be suitable for those with narcolepsy due to safety reasons.
Your doctor may also look at prescribing medication to help manage the symptoms of narcolepsy. Stimulants and antidepressants have both been used, not all of them are licensed for treating narcolepsy, the effectiveness for treating narcolepsy is not always strong and they can have undesirable side effects. Some side effects should dissipate with time. Sedatives may also be prescribed to improve night-time sleep.
Diagnosis of narcolepsy
The first step in gaining a diagnosis is to see your doctor to look at ruling out diagnoses that share some of the same symptoms, for example, seizures that can cause cataplexy and extreme tiredness, or sleep apnoea which can cause daytime drowsiness.
Your doctor will likely ask you about your lifestyle and sleeping habits. If they feel that it could be narcolepsy then you will be referred to be assessed by a sleep specialist. At this point, your sleep patterns will be monitored, and this will usually involve an overnight stay in a specialist sleep centre.
A family history of narcolepsy or your environment can increase your risk of narcolepsy. Your risk may also increase after an upper airway infection, or in rare cases because of a head injury, sarcoidosis, a stroke or another medical condition.4
- Research to date has not identified that narcolepsy negatively impacts pregnancy outcomes. In extremely rare cases patients had cataplexy that interfered with the delivery. Management of narcolepsy during pregnancy5
- Sudden attacks, such as falling asleep during activities can pose a serious risk to you or other people, especially if this happens whilst driving. It is important that you disclose sleep attacks to your doctor.
- Narcolepsy can have a severe impact on your social life and intimacy, with intense emotions triggering cataplexy
- You could come to harm from falling as a result of the sudden loss of muscle control in cataplexy.
- There is the misconception of the general public, which could cause problems at work or in your social life and increase isolation
- Other health problems such as obesity, increased risk of heart problems, increased risk of type 2 diabetes and decline in mental health
How common is narcolepsy?
Narcolepsy is not common, but due to the range of symptoms is well-known to many people. In the UK it is thought 30,000 people may be affected by narcolepsy. This is a similar rate to the US where 1 in 2000 are affected by narcolepsy.6 It is generally thought, however, that the prevalence of narcolepsy could be much more due to individuals who have not been diagnosed or misdiagnosed.
Can narcolepsy be prevented?
There is no cure for narcolepsy, however, making the right changes in your lifestyle and sleep habits could see a benefit and reduction in attacks.
When should I see a doctor?
Generally, you should see a doctor when your symptoms impact your life in a negative way or when you may pose a risk to yourself or to others as a result of your symptoms. If you use the Epworth Sleepiness scale as a guide, then a score of 10 to 15 says “You may want to consider seeking medical attention” and a score of 16 or more encourages you to consider seeking medical attention. You can find the Epworth scale here.
Narcolepsy is a chronic sleep disorder, which, if undiagnosed or untreated can have severe implications on your well-being - physical, social and mental. If well managed people with narcolepsy can lead a full and active life. If you find that during the day you suddenly fall asleep, feel extremely weak or experience hallucinations around sleep times, then you should see your doctor for further investigations. There are treatments and ways to improve your situation which can be easily implemented.
- Ebrahim IO, Howard RS, Kopelman MD, Sharief MK, Williams AJ. The hypocretin/orexin system. J R Soc Med [Internet]. 2002 May [cited 2023 Apr 6];95(5):227–30. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1279673/
- Hallberg P, Smedje H, Eriksson N, Kohnke H, Daniilidou M, Öhman I, et al. Pandemrix-induced narcolepsy is associated with genes related to immunity and neuronal survival. EBioMedicine [Internet]. 2019 Jan 30 [cited 2023 Apr 6];40:595–604. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6413474/
- The best temperature for sleep: advice & tips [Internet]. Sleep Foundation. 2020 [cited 2023 Apr 6]. Available from: https://www.sleepfoundation.org/bedroom-environment/best-temperature-for-sleep
- Narcolepsy - narcolepsy | nhlbi, nih [Internet]. 2022 [cited 2023 Apr 6]. Available from: https://www.nhlbi.nih.gov/health/narcolepsy
- Thorpy M, Zhao CG, Dauvilliers Y. Management of narcolepsy during pregnancy. Sleep Med. 2013 Apr;14(4):367–76.
- Narcolepsy - symptoms, causes, treatment | nord [Internet]. [cited 2023 Apr 6]. Available from: https://rarediseases.org/rare-diseases/narcolepsy/