Finding yourself falling asleep unexpectedly? You are not alone…
Narcolepsy affects 1 in 2000 people and yet, although research and data is helping to more clearly define the problem, regrettably a solution and cure are keeping us napping.
Definition: What Is Narcolepsy
Narcolepsy is one of the major Sleep Disorders or Hypersomnia and in its simplest form is best described as an uncontrollable excessive sleeping tendency, particularly during what may be considered “normal” daylight hours. This uncontrollable sleepiness is more than just being a little tired, it feels as though you are tired ALL the time and not only is it difficult to stay awake, when you do sleep it is not a deep, satisfying experience.
From a more technical perspective, Narcolepsy is indeed a neurological disorder first documented in Germany in the late 1870’s. Recent research has focused on Genetic analysis that affects the production of chemicals in the brain, such as Hypocretin, which has an influence on sleep cycles and REM Sleep. Chemical imbalances together with environmental stresses are believed to trigger bouts of Narcolepsy and there is yet to be a consensus in the academic arena – sleep disorder, medical disorder, neurological disorder and in recent research even auto-immune disorder.
In summary, you frequently fall asleep at random times, unexpectedly and without warning…and it is a problem for you or your friends and family. This video from National Geographic may help you to better understand what you or your family or friend may be going through.
Types Of Narcolepsy
Broadly there are two types of Narcolepsy and in 2017 these were more clearly defined based on the outcomes of research completed over the last five years.
- Narcolepsy Type 1 (which used to be defined as Narcolepsy with Cataplexy) is described as a combination of hyper somnolence and have high levels of Hypocretin and also muscle weakness triggered by emotions
- Narcolepsy Type 2 (which used to be defined as Narcolepsy without Cataplexy) – community members with this condition experience excessive daytime sleepiness but usually do not have muscle weakness triggered by emotions. They usually also have less severe symptoms and have normal levels of the brain hormone hypocretin
- In Children – Narcolepsy can become recognizable in children as young as 5 or 6 years of age, and delays in diagnosis are understandably common. Early-stage Narcolepsy has some unique clinical features compared with later onset cases, including daytime sleepiness manifesting primarily as habitual napping or irritability and hyperactivity
- In Adults – Research indicates that over 50% of Narcolepsy cases remain undiagnosed primarily because the symptoms are challenging to define without very specific testing, and regrettably also because people are somewhat embarrassed by the experience; we highly recommend seeing a Sleep Specialist if there is ever a continuous interruption to your sleep pattern
- Mild Narcolepsy – generally exhibits itself in minor examples of some of the 5 Core Narcolepsy Symptoms
- Severe Narcolepsy – as to be expected, this is demonstrated by extreme examples of the 5 Core Narcolepsy Symptoms resulting in examples such as falling asleep mid-conversation, falling asleep whilst walking, vivid dreams that you remember easily in wakening, hallucinations whilst you are awake
What Causes Narcolepsy
In the late 90’s researchers were able to identify the gene that causes narcolepsy on chromosome 12. The gene permits cells in the hypothalamus (the part of the brain that regulates sleep performance) to accept communications from other cells. When this gene is atypical, cells cannot commune properly, and consequently abnormal sleeping patterns develop which in the extreme become severe Narcolepsy.
Regrettably the question “How do you get narcolepsy?” remains a mystery although several current lines of research are demonstrating a greater potential to understand the causes, as well as point towards a cure. This research is leaning towards the management of certain natural chemicals in the brain (called neurotransmitters) that fail to properly maintain boundaries between sleep and wake. Slightly complicating this is evidence that indicates that stress, anxiety and other emotional and environmental issues can also trigger the onset of Narcolepsy.
Narcolepsy Symptoms & Effects
The onset of Narcolepsy can be frustratingly slow to appear, and one of the challenges in dealing with this disorder is that it is not until all the symptoms are present that a clear diagnosis can be determined. The five core symptoms are:
- An uncontrollable desire to sleep
- Muscle weakening or unexpected relaxation of knees, mouth, eyes drooping, especially when in conjunction with vivid emotions such as fear or laughter
- Striking dreams or lifelike hallucinations as you fall asleep or as you awaken
- Poor sleep experiences at night, falling asleep OK but waking frequently
- Being unable to consciously move or speak whilst falling asleep or on awakening
Diagnosing Narcolepsy is challenging as the symptoms tend to slowly appear over time, primarily between the ages of 15 to 25 years, and remain. Because of this slow appearance many sufferers develop ways and means to work around the symptoms and it becomes workable, if somewhat eccentric at times.
There are now quality tests available with sufficient historical data so as to be reliable in assisting in the diagnosis of Narcolepsy:
In addition, Sleep Specialists have developed a range of sleep studies that assist in the diagnosis of all the main sleep disorders – Insomnia, Sleep Apnea, Sleep Deprivation, Snoring and now Narcolepsy.
In this video from Harvard Medical School, a young patient with narcolepsy and her mother discuss how the diagnosis of narcolepsy was made. It includes how sleep and nap studies are used to confirm the diagnosis.
Regrettably, as the primary reason for Narcolepsy is the destruction of cells in the brain that produce Hypocretin, a cure is yet to be found. Consequently, the only options available are those that address and attempt to relieve the symptoms.
- Pharmaceutical medication
- Stimulants – we are unable to offer specific examples of medical stimulants and as always, we recommend that you consult with your physician
- REM treatments – these rely on antidepressants which act on the body to reduce anxiety and stress
- Change to lifestyle – implementing and maintaining good Sleep Hygiene (regular awake and sleep cycles) is essential to managing Narcolepsy, as is a healthy diet, not smoking, minimising alcohol intake and being physically active
- Alternative non-pharmaceutical therapies – preliminary research is indicating that non-medical treatments can complement a more structured medication approach. These can include meditation and self-healing, herbal teas, acupuncture and acupressure, massage therapy, structured exercise such as Pilates, muscle and joint manipulation and other alternative treatments can have positive effects on some narcolepsy symptoms
In many cases it is indeed a combination of the above that results in some level of mitigation. There are currently 3 new Narcolepsy medications in trials and with 1 in 2000 people suffering from mild to severe forms of Narcolepsy there is significant incentive for the major pharmaceutical companies to deliver a better solution.
Based on current research, case studies and data, Narcolepsy is a life-long sleeping disorder. The indications may vary in strength during your lifespan, but they never completely go away. Symptoms usually progressively degrade over time, and then tend to become stable. Even then, the extreme daytime drowsiness may become more pronounced and require additional medication, lifestyle changes or complementary therapies.
Narcolepsy VS Sleep Apnea
Whilst often discussed in parallel as common Sleep Disorders, Narcolepsy and Sleep Apnea are distinctly different in cause, treatment and outcomes.
- Loss of Hypocretin in the brain
- Starts in childhood and teenage years mostly
- No current cure but symptoms can be treated and minimised by medication
- Sleep Apnea
- Primarily physical obstruction of the airway together with some brain dysfunction
- Mainly affects people 40+
- Treatment mainly by physically relieving the airway obstruction – see CPAP or BiPAP masks and machines
Living With Narcolepsy
The following video courtesy of National Geographic provides a solid overview of the condition and insights into how people develop coping mechanisms in their day to day lives.
Do I Have Narcolepsy
Only a physician, and preferably one who is a Sleep Specialist and an expert in Narcolepsy can definitively diagnose whether you do indeed have Narcolepsy. However, if you find that you are experiencing some of the following key symptomatic indicators you should stop Googling and go and see your GP:
- An overpowering need to sleep
- Muscle fading or surprising relaxation of knees, mouth, eyes drooping, particularly when in concurrence with dramatic emotions such as fright or laughter
- Strong vivid dreams or lifelike hallucinations as you fall asleep or as you come awake
- Poor sleep hygiene at night, able to fall asleep OK but rousing often
- Being incapable of consciously moving or speaking as you fall asleep or as you wake
About 50% of Narcolepsy sufferers, particularly in mild cases, are never diagnosed primarily because of fear or rejection by the community. Sadly, 95% of people with symptoms can be successfully treated and can enjoy an improved lifestyle. See your Doctor today.
Narcolepsy FAQ’s – Frequently Asked Questions
- Narcolepsy affects 1 in 2000 people worldwide which means that in 2017 there an estimated 3.8 million potential suffers
- In Japan 1 in 200, in Hong Kong 1 in 2500, in Israel 1 in 5000
- Only 50% of Narcolepsy sufferers are actually diagnosed with the disorder
- Only 25% are undergoing regular advanced treatment
- Symptoms typically begin early in life from 10 years old onwards
- New Narcolepsy conditions rarely occur over 30 years of age
- About 25% of the population carry the genetic marker for Narcolepsy likelihood
- A normal night’s sleep is 8 hours, Narcolepsy sufferers can sleep for 12 hours regularly and up to 20 hours
- 10 percent of Narcolepsy patients have a close relative with the disease
How Common Is Narcolepsy
- Narcolepsy affects 1 in 2000 people worldwide which means that in 2017 there an estimated 3.8 million potential suffers
History Of Narcolepsy
- Thomas Willis (1621-1675) described patients ‘with a sleepy disposition who suddenly fall fast asleep’ which may represent the earliest account of narcolepsy – you can discover a detailed treatise on the History Of Narcolepsy here
Is Narcolepsy Genetic
- Researchers are attempting to come up with a unifying theory involving genetic factors, autoimmunity, and deficiencies in hypocretin, a brain peptide that is important in regulating sleep, particularly REM sleep.
Is Narcolepsy A Disease
- Given that a definition of “disease” is “…a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms…” then the answer is yes; the more common term is a Neurological Sleep Disorder.
Is Narcolepsy A Disability
- Due to the complex nature of Narcolepsy we are not is a position to define this as a disability in the purist and most technical sense – we recommend that you refer to websites such as https://www.disability-benefits-help.org/disabling-conditions/narcolepsy to assist you in a more structured definition
Narcolepsy & Driving
- Many people with narcolepsy retain the capacity to drive. However, narcolepsy is a disorder that may affect your capability to drive in safety. It is likely that you will be allowed to drive only if the administration that licenses cars and drivers for driving on community roads in your location is satisfied that your condition is well controlled. Clearly it is essential that by allowing you to drive you will not cause an intolerable risk to you and to other members of the greater community.
Narcolepsy & Diet
- As with many Sleep Disorders, lifestyle and diet can play a significant role in managing your Narcolepsy. Apart from a sound Sleep Hygiene regimen, a sound balanced diet together with moderate control of the consumption of alcohol, stopping smoking and reducing weight all contribute to the better management of Narcolepsy on 98% of all cases.
Narcolepsy & Depression
- Depression is often a concurrent issue with Narcolepsy sufferers and has been considered to be variously a reaction to chronic sleepiness or an endogenous expression of the pathophysiology of Narcolepsy. In plain English this means that one may cause the other or that they are coexisting conditions at varying levels of severity. We highly recommend that you consult with your Doctor, Sleep Specialist and Psychologist/Psychiatrist to explore this issue.
Four British narcoleptics on a journey that takes them to the city that never sleeps. They’ve spent their lives isolated – knowing no-one with their condition and unaware of what they can do to get on top of their sleep disorder.
Help – Narcolepsy Networks & Support Groups
- Narcolepsy Network – http://narcolepsynetwork.org/
- Wake Up Narcolepsy – http://www.wakeupnarcolepsy.org/
- Narcolepsy Association – UK – narcolepsy.org.uk
- Center for Narcolepsy, Stanford School of Medicine – USA – med.stanford.edu/school/Psychiatry/narcolepsy
We recommend that you visit these links below to explore some of the alternative solutions to your sleep and snoring concerns:
- Visit Your Sleep Doctor
- Lifestyle Change – Alcohol & Weight Loss
- Anti Snoring Pillows
- Nasal Strips
- Dental Appliances
- Insomnia Medications & Sleeping Pills
- Positive Airway Pressure – CPAP Machines
- Bidirectional Positive Airway Pressure – BiPAP Machines
- Elective Snoring Surgery
The American Sleep Association (ASA) was founded in 2002 by a group of Sleep Professionals seeking to improve Public Health by increasing awareness of the importance of Sleep in ensuring a high quality of life, as well as the dangers of Sleep Disorders. Currently, our focus is on resolving and alleviating Insomnia, Narcolepsy, Sleep Apnea, Sleep Deprivation and Snoring. Through our own Research, and by investing in the Research of others, the ASA Members and Board are committed educating millions of people on the importance of sleep health.
Reference Web Resources:
- The Mayo Clinic Sleep Center For Sleep Medicine
- The Stanford Center for Sleep Sciences and Medicine
- Harvard Medical School – Division Of Sleep Medicine
- Johns Hopkins Center for Sleep
Reference Book & Research Paper Resources:
- Gélineau J, De la narcolepsie. Gazette des Hôpitaux Civils et Militaires 1880 ; part a, 53 : 626-628, part b, 54; 635-637.
- Löwenfeld L, Über Narkolepsie. Münchener medizische Wochenschrift 1902; 49: 1041-1045.
- Westphal C, Zwei Krankheitsfalle. Archiv für Psychiatrie und Nervenkrankheiten 1877; 7: 631-635.
- Fisher F, Epileptoide schlafzustände. Archiv für Psychiatrie und Nervenkrankheiten 1878; 8: 200-203.
- Lennox WC, Thomas Willis on Narcolepsy. Archives Neurology and Psychiatry 1939; 4:348-351