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.
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.
- Narcolepsy is a sleep disorder with a primary symptom of irresistible daytime sleepiness accompanied by additional symptoms of cataplexy, sleep paralysis, hypnagogic hallucinations and automatic behavior.
- The overwhelming daytime sleepiness of narcolepsy can severely affect the quality of life and can be dangerous.
- Narcolepsy is diagnosed by a nighttime sleep study followed by daytime nap tests which reveal the presence of abnormalities in REM (dreaming) sleep
- Although narcolepsy cannot be cured, good sleep habits and the use of medications can bring these symptoms under control and improve the quality of life.
We have all had the experience of occasional daytime drowsiness after a night of interrupted sleep or after not getting enough sleep at night. Narcolepsy, which we will be discussing here, is a sleep disorder in which persistent, unremitting, irresistible sleepiness invades waking life, robbing the sleepy person of the ability to stay awake and function. In narcolepsy, involuntarily falling asleep can occur in almost any circumstance. Falling asleep watching television or attending a boring meeting might not be considered too serious. Falling asleep eating, waiting at a drive-in window, or during conversation may seem unusual or even humorous. Falling asleep driving a car or operating machinery, however, can be life threatening. Narcolepsy is not funny or harmless, and here we will explore this sleep disorder in some detail.
There has been considerable misinformation in the popular press, television, and movies about narcolepsy. We often read or hear that very sleepy people must have narcolepsy. However, a diagnosis of narcolepsy is much more complicated than just an observation of someone falling asleep during their waking hours. Sleepiness is the primary symptom of narcolepsy, but it is only one of several symptoms. It is also important to keep in mind that daytime sleepiness is not specific to narcolepsy. Other sleep disorders, side effects of medications, or even just not getting enough sleep at night can all be associated with daytime sleepiness. In order to diagnose narcolepsy accurately, evaluation in a Sleep Disorders Center with overnight sleep studies and daytime nap testing is necessary.
Narcolepsy was first named in 1880, but it was not until the 1960s that electrophysiological recordings of brain activity revealed that sleep in patients with narcolepsy was characterized by what are called sleep onset REM periods (SOREMs). Unlike REM periods in normal sleepers which occur at 90-120 minute intervals, REM periods in narcolepsy occur immediately at sleep onset or within just a few minutes of falling asleep. The multiple sleep latency test (MSLT), which is a series of daytime naps, was developed at Stanford University in the late 1970s. During short daytime naps narcoleptic patients, in contrast to normal sleepers, had multiple instances of sleep SOREMs during brief naps. This abnormality in the timing of narcoleptic REM sleep suggests that narcolepsy is a disorder of REM sleep. Those narcolepsy symptoms which we have reviewed are similar to components of REM sleep—-muscle weakness or paralysis and vivid dreamlike experiences —which have been displaced into waking rather than being confined to REM sleep.
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 cluster of symptoms, in addition to daytime sleepiness, associated with narcolepsy, include cataplexy, sleep paralysis, and hypnagogic hallucinations. Automatic behavior is also another symptom which patients with narcolepsy may experience. Here we will describe these symptoms in more detail.
The sensation of daytime sleepiness is one which virtually everyone has occasionally experienced. However, sleepiness which occurs with narcolepsy is much more intense than ordinary drowsiness. Sleepiness is persistent and powerful, and it becomes impossible to resist falling asleep. This sleepiness can occur during virtually any circumstance in which the person is in quiet surroundings without much stimulation or the urge to fall asleep may be so compelling that sleep occurs even in very noisy or busy settings. In Emma’s case she fell asleep in school, at work, at concerts and sports games, and finally with disastrous consequences while driving a car.
It is important to keep in mind that sleepiness is not specific to narcolepsy, and it is well known that sleepiness can be the result of poor sleep habits or the result of just about anything that interrupts our sleep at night. It might be presumed that people with narcolepsy, since they are so sleepy during the day, sleep well at night. This is not necessarily the case. Many people with narcolepsy have arousal and awakenings during the night which interrupt their sleep.
Undoubtedly, the most obvious and common reason for daytime sleepiness for most of us is that we don’t get enough regularly scheduled hours of sleep at night. For most adults a normal amount of nighttime sleep is seven or eight hours with a consistent, regular bedtime and morning arising time. Factors in our sleeping environment such as a pet jumping off and on the bed or a loudly snoring bedpartner can disturb sleep. Caffeine containing beverages or alcohol are associated with interrupted nighttime sleep, and stimulant medications can also fragment sleep. Some sleeping medications which we might use to improve our nighttime sleep can have drowsy “hangover” effects the next day. It is always important to make sure first that you have good sleeping habits, that you are not drinking caffeine or alcohol near bedtime, and that you have a quiet sleeping environment before assuming that daytime sleepiness you may experience is abnormal.
There are many other sleep disorders which may interrupt nighttime sleep and which also cause daytime sleepiness. Some of these disorders include loud snoring, sleep apnea (stopping breathing during sleep), repetitive leg movements during sleep (periodic leg movements), restless legs syndrome which delays falling asleep, or unusual behaviors during sleep such as sleep talking, sleep walking, nightmares, or night terrors. If you have insomnia, trouble falling and staying asleep, your sleep may be interrupted, and you may feel drowsy.
In summary, if you are very drowsy during the day you do not necessarily have narcolepsy. But, you may have some poor sleep habits which you can improve upon or possibly there may be another sleep disorder causing this sleepiness.
Another symptom of narcolepsy is cataplexy. Cataplexy is sudden muscle weakness which occurs during the day specifically in response to strong emotions such as laughter, anger, surprise, or excitement. As we saw in Emma’s case, she experienced an episode of cataplexy with the excitement of catching a fish. This muscle weakness can take many forms ranging from a complete buckling of major skeletal muscles resulting in a collapse to the ground. More subtle weakness, for example, in the hands might result in dropping something or weakness in the neck muscles might be associated with head drooping.
It may take several minutes for the cataplexy attack to resolve spontaneously, and a person who has fallen to the ground may appear to be unconscious. However, during the attack this person is completely aware of their surroundings and is not unconscious. Cataplectic attacks can be very frightening and disorienting since the person who is experiencing the attack cannot move, even though they are fully conscious. Following the cataplectic episode, all muscle movement is normal. This symptom of cataplexy occurring with strong emotions, in conjunction with excessive daytime sleepiness, provides one of the strongest clues to a possible diagnosis of narcolepsy. Unlike drowsiness which we previously discussed, this muscle weakness, which is triggered by strong emotions, is specific to the disorder of narcolepsy.
Sleep paralysis is a sensation of literally being paralyzed while awake and aware of the environment. This inability to move can occur just as sleep begins at the start of the night, but it can also occur during the night after an awakening or just after waking up in the morning. Similar to cataplexy, the person who is experiencing sleep paralysis is conscious, but he/she is completely unable to move. Sleep paralysis can also occur during daytime naps. Unlike cataplexy, sleep paralysis also occurs on occasion in normal individuals, and it is not specific to narcolepsy. The term isolated sleep paralysis is used to describe sleep paralysis in otherwise normal sleepers who do not have narcolepsy, but who have episodes of sleep paralysis.
Hypnagogic hallucinations are vivid dreamlike experiences which occur at sleep onset. Patients may describe these experiences as “waking dreams” or even hallucinations. It is often difficult for the person experiencing a hypnagogic hallucination to determine whether these are dreams occurring during sleep or figments of the waking imagination. With hypnagogic hallucinations something may appear to be moving around in the room or going under the bed. The imagery of these episodes may be much more vivid such as the experience of a patient who saw elephants and flowers in his room even though he thought he was awake. Like sleep paralysis, hypnagogic hallucinations are not specific to narcolepsy, and normal sleepers can also occasionally experience this phenomenon.
Automatic behavior is an activity which a person performs repetitively without being aware of doing so and then “coming to”, only to realize that significant time has elapsed without their awareness. Some examples of automatic behavior are a painter painting a wall and then realizing he has painted the entire wall without being aware of doing so or a machine operator stamping out parts and then realizing he has stamped out many more parts than he realized. The most common, and probably most dangerous, example of automatic behavior can occur with driving. In the case of Emma, she drove several miles without being aware of doing so, and there are instances of persons driving several hundred miles without being aware covering that much territory. Like sleep paralysis and hypnagogic hallucinations, automatic behavior is not specific to narcolepsy.
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.
After taking a complete medical and sleep history, the sleep physician will ask you about the symptoms of narcolepsy which we have discussed. Any information which you have collected at home as described above will be of help in this interview. If narcolepsy is suspected, the sleep evaluation will consist of two parts: an overnight sleep study, and a series of daytime nap tests, the MSLT, the following day. Prior to your sleep evaluation, you may be asked to keep a sleep diary at home for two weeks.
The night time sleep study
During the overnight sleep study a technician will monitor your sleep by electrodes and other monitoring devices attached to the surface of your scalp and skin. The nighttime procedure is completely noninvasive, and nothing breaks or pierces the skin. Brain activity, chin and leg muscle activity, eye movements, heart rate, oxygen saturations, breathing through your nose and mouth, and movements of your diaphragm during breathing will all be recorded.
The purpose of the nighttime study is two-fold. First, the nighttime study will determine if there are disorders such as sleep apnea (stopping breathing) which are disturbing your nighttime sleep and causing your sleepiness during the day. Second, the nighttime study allows the sleep specialist to document that you have obtained an adequate amount of sleep the night before assessing your daytime sleepiness and that you have obtained normal percentages of the various sleep stages, especially REM sleep.
Daytime nap testing with the MSLT
Daytime nap testing is performed on the day following the overnight sleep study. It is a very important part of the testing for narcolepsy. Patients may question the necessity for performing daytime testing, but daytime testing provides essential information about the degree of physiological sleepiness as well as about the presence of SOREMs. This information is crucial in making the diagnosis of narcolepsy.
- There are typically four to six naps performed across the course of the day. You will change into your usual clothes after you get up, have breakfast, and relax in your room until the first nap which begins about two hours after you wake up. Throughout the day, naps will occur at about two hour intervals. You will have electrodes attached for monitoring your brain activity, eye movements, and chin muscle activity (and frequently heart rate) during the MSLT. These monitoring devices will remain attached throughout the day.
- The first nap begins about two hours after you wake up. After filling out a brief questionnaire, you will lie down in bed in a darkened bedroom. After you are asked to perform a series of calibration procedures such as opening and closing your eyes, the technician will ask you to close your eyes and try to fall asleep.
- The duration of the nap depends upon how quickly you fall asleep. The length of the nap may range from about 15 minutes to about 30 minutes. When it is time to get up the technician will call you, you will complete another brief questionnaire, and you will get out of bed.
- In between naps, it is important to remain awake, and the technician will check with you periodically. It is also important not to drink caffeine containing beverages or engage in vigorous physical activity in an attempt to stay awake. The day of nap testing should be relaxing and quiet.
After the overnight sleep study followed by the daytime MSLT has been performed, the sleep physician can determine if narcolepsy is present. Narcolepsy has been divided into two diagnostic types in the International Classification of Sleep Disorders: Narcolepsy Type 1 and Narcolepsy Type 2. Both diagnoses require a history of severe and irresistible daytime sleepiness. During the daytime MSLT, both diagnoses require the patient to fall asleep within an average of eight minutes or less across the daytime naps. In addition, there must be at least two SOREMs during daytime naps. (One of these SOREMS may also occur during the previous nighttime sleep recording.) A diagnosis of Narcolepsy Type 1 requires a history of cataplexy whereas cataplexy is not present in Narcolepsy Type 2.
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.
There is no cure for narcolepsy, but medications can dramatically improve daytime sleepiness as well as minimize episodes of cataplexy. After a review of your overnight sleep study and daytime MSLT, your physician will determine if you have narcolepsy and which medications can be of potential benefit.
- If you are diagnosed with narcolepsy, your first goal should be to follow a very regular schedule of sleeping and waking times with seven to eight hours in bed per night. You do not want to worsen your symptoms of excessive sleepiness through nighttime sleep deprivation or an irregularity in your schedule.
- For many patients, brief, planned daytime naps lasting 15 to 20 minutes two or three times during the day provide significant relief of sleepiness. Persons who have narcolepsy typically feel very refreshed by brief daytime naps. A schedule of naps can be individualized to each patient.
- Stimulant drugs such as amphetamines or methylphenidate (Ritalin) taken in the lowest effective doses spaced throughout the day in anticipation of periods of excessive sleepiness can be effective in combating sleepiness. However, these medications can have adverse side effects such as blood pressure elevations, heart palpitations, and nervousness or shakiness. The potential for tolerance and abuse is also a drawback. These medications are not effective in controlling cataplexy.
- Two medications which have been developed to control sleepiness in narcolepsy that do not have the adverse side effects of the amphetamines are modafinil (Provigil) and armodafinil (Nuvigil). Like other stimulant drugs, these medications do not effectively control cataplexy.
- The most recent pharmacological treatment approved by the Food and Drug Administration for the treatment of narcolepsy is sodium oxybate (Xyrem). In contrast to the drugs we have discussed above, sodium oxybate is effective in improving not only daytime sleepiness, but also in treating cataplexy and disturbed nighttime sleep. Other medications have also been used to treat cataplexy including the newer selective serotonin reuptake inhibitors (SSRIs) such as venlafaxine (Effexor), fluoxetine (Prozac), or duloxetine (Cymbalta) and the older tricyclic antidepressants such as protriptyline (Vivactil), or imipramine (Tofranil).
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 Sleep Apnea is the 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
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.
Approximately 0.02 to 0.18% of the population has been estimated to have narcolepsy accompanied by the symptom of cataplexy. Men and women are about equally affected. The percentage of the population which has narcolepsy, but not cataplexy, is likely to be substantially larger, but the prevalence is not well known. Symptoms of narcolepsy can occur in children, and many narcoleptics develop symptoms and severe daytime sleepiness at around adolescence or slightly before. A great deal of research has been performed in recent years in an attempt to uncover the genetic basis of narcolepsy, and there is evidence that narcoleptic patients with cataplexy have a specific human leukocyte antigen (HLA), a gene complex regulating the human immune system.
Another major advance in understanding narcolepsy occurred in the late 1990s. A neuropeptide, which is a protein molecule in the brain regulating nervous system communication, was discovered simultaneously by two different groups of researchers. This neuropeptide was named both orexin by one group and hypocretin by the second group. Orexin (hypocretin) was discovered in the hypothalamus of the brain, an area which regulates many bodily functions, including sleep and eating. Post mortem brain studies of narcoleptic patients with cataplexy revealed an almost complete loss of orexin (hypocretin) producing cells in the hypothalamus, and assays of cerebrospinal fluid (CSF) reveal that patients with narcolepsy and cataplexy have low concentrations of orexin (hypocretin). These findings in conjunction with the HLA studies suggest that narcolepsy may be an autoimmune disorder, but additional work, particularly in animal models of narcolepsy, is ongoing to provide further evidence for this possibility.
It is not possible to diagnose narcolepsy accurately without sleep testing and without observing the timing of REM sleep. However, there are some things you can do to improve your nighttime sleep in order to determine if other factors may be the source of sleepiness during the day.
- Keep a written diary of your sleeping and waking times as well as the amount of sleep you get each night. In order to rule out sleepiness as the result of inadequate amounts of nighttime sleep, you should keep a regular schedule of sleeping and waking times and spend seven to eight hours in bed each night. You should keep the same schedule on the weekends that you do during the week. Do not take extended daytime naps lasting more than 20-30 minutes since daytime sleep can affect your ability to sleep at night. If you find that you are sleeping less than seven hours per night or your schedule is irregular, increase the amount of your nighttime sleep and regularize your schedule to determine if these measures improve your sleepiness during the day.
- You should not drink coffee, tea, cola drinks, or chocolate containing drinks before bed. These all contain caffeine that can disturb your sleep.
- Do not drink alcohol in the evening. Alcohol is well known to cause fragmentation and disruption of sleep.
- During the day, keep a record of when you feel very sleepy or suspect that you have fallen asleep and what you were doing at the time of these sleepy periods or actual sleep. You can also try taking two or three brief (20 minutes or less) daytime naps to determine if these brief naps are refreshing or whether you feel about the same when you wake up.
- Ask your bed partner or someone in your household to observe you during sleep. Some important things for your observer to note are loud snoring, possible episodes of stopping breathing, periodic movements including jerking of your arms or legs, or any other unusual movements of your body. As we have previously discussed, daytime sleepiness can be the result of sleep disorders other than narcolepsy, and this information can be helpful when you consult a sleep specialist.
- Write down a description of any episodes of cataplexy, sleep paralysis or hypnagogic hallucinations that you suspect you may have. Note the times of these episodes (at sleep onset, after nighttime awakenings, or upon arising in the morning), how they ended (for example, I fell asleep), or the circumstances surrounding the possible episodes of cataplexy. This information will also be helpful when consulting a sleep specialist.
If your daytime sleepiness continues to be a persistent problem even after following these suggestions or you are able to identify some of the symptoms of narcolepsy which we have discussed, consult your regular physician who will most likely refer you to a Sleep Disorders Center. You may also wish to contact a Sleep Center directly in your area which can provide you with further information and give you direction as to how to proceed. Centers accredited by the American Academy of Sleep Medicine are staffed by physicians who are board certified in sleep disorders medicine and who have expertise in diagnosing narcolepsy as well as any other sleep disorder you may have.
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.
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
As we have seen in our review, narcolepsy is far more than just falling asleep during the day. Severe daytime sleepiness along with the symptoms of cataplexy, sleep paralysis, and hypnagogic hallucinations can have a significant, life-long impact upon the quality of life. Fortunately, in recent years we have come to a greater understanding of how to diagnose and effectively treat this disorder so that persons with narcolepsy are not imprisoned by their sleepiness. Now, the wide availability of accredited Sleep Disorders Centers as well as physicians and support personnel trained in sleep disorders medicine has made it much easier to obtain an accurate diagnosis.
This material, research and analysis was conducted on behalf of the American Sleep Association by:
Kristyna M. Hartse, Ph.D.
Diplomate, American Board of Sleep Medicine (ABSM)
Fellow, American Academy of Sleep Medicine (AASM)
Registered Polysomnographic Sleep Technologist (RPSGT)
Registered Sleep Technologist (RST)
Certification in Clinical Sleep Health (CCSH)
- 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:
- Meir Kryger, M. D. The mystery of sleep: Why a good night’s rest is vital to a better, healthier life Yale University Press, 2017 (book)
- 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
Narcolepsy Case Study & Impacts
In this overview we discuss the symptoms of narcolepsy, how we diagnose narcolepsy, and how narcolepsy is treated. To assist you in understanding the realities of Narcolepsy, let’s look at the story of Emma (not her real name). As you read through her story, you will see how much narcolepsy can affect all aspects of life.
A Sleepy Life: The Story of Emma
Emma was a 65-year-old woman who had lived in a small town all her life and who came to the Sleep Disorders Center at the urging of a new neurologist she had recently seen. This is how she describes the incident which prompted her to look into her sleep problem.
“Today was the absolute worst day of my life. My husband, Bill, recently went into a nursing home about 10 miles from where we live, and today I had planned to see him. This was the first time I have driven a car any distance in many years since Bill always did the driving. I remember getting into the car, backing out of the driveway, and then going about three blocks past the neighborhood school.
The next thing I remember is waking up in the driver’s seat of my car, sitting in the living room of a house which was about five miles from where we live. I was shocked when I realized that I had driven off the road and crashed through an outside wall and through a large picture window until I landed in the living room! Thank goodness no one was home and no one was hurt. I don’t remember falling asleep at all or how I got there, but I found myself in my car sitting in that living room. I called the police who thought I must have been drinking. They asked me what happened, and I told them I didn’t know, but maybe I had fallen asleep. I know they didn’t believe me. Now, besides my husband being in the nursing home, I have a citation for reckless driving and a huge expense of paying for the damage to the house.”
This scenario seems unbelievable. How is it possible to drive through the side of a house without being aware of doing so and then being unaware of how you got there? Is it even possible to be that sleepy? Let’s delve some more into Emma’s life long battle with sleepiness.
“I’ve been sleepy during the day as long as I can remember. I had lots of trouble in school, starting in about the sixth grade, because I constantly fell asleep in class. The teachers thought I wasn’t paying attention. It was so frustrating and embarrassing because I tried very hard to stay awake, but I just couldn’t. It was as though sleepiness possessed my brain and body, and I couldn’t resist falling asleep. I couldn’t do anything like go to the movies, go to church, or finish my homework without constantly falling asleep. I even fell asleep eating in the lunch room at school, and all my friends laughed at me.
My parents were at their wits end and took me to so many different doctors. They tried all different kinds of vitamins and medicines, but nothing helped. None of the tests they ran showed that anything was wrong with me I tried sleeping more at night, but that didn’t help much either. As I got a little older drinking coffee helped me slightly to stay awake, and there was a medicine I took to keep me awake, but it made me nervous and made my heart race. The only thing that helped much was taking short naps of 15-20 minutes or so during the day, and I felt more awake for a while after the nap, but then I got sleepy again. My teachers would not let me take naps in school. I barely managed to graduate from high school because I couldn’t stay awake in my classes, and I married my husband right out of high school when I was 18.”
After Emma got married, her life became easier because her husband was very much aware of her sleepiness, and he did all the driving. However, Emma and her life still continued to be at the mercy of her sleepiness.
“I tried working in an office after we first got married, but I was fired from my job because I was constantly asleep and making mistakes. I became a hair dresser, and opened my own shop. But even trying to work as a hair dresser was impossible for me because I would fall asleep standing up resting my hands resting in my clients’ hair. I was so frustrated that I gave up on trying to keep a job, and I stayed at home and raised our two children.
Being so sleepy really limited where I could go or what I could do, and I started to feel depressed. My children were always embarrassed by me because I would fall asleep at their basketball games and concerts when they were in high school. I even fell asleep once during a teacher-parent conference with the teacher sitting right there. Sleepiness has controlled my life for as long as I can remember, but I never knew what to do about it except to try and hide it the best I could. Since I never had to drive when my husband was at home, I never worried about driving until this terrible accident today.”
Being sleepy during the day clearly affected Emma’s high school years, her social relationships, and her ability to have a career. It affected her emotionally, and it affected her relationship with her children. Although she was frequently teased about her sleepiness, needless to say Emma did not find her sleepiness humorous. Upon further questioning, Emma also reported some other unusual symptoms related to her sleep.
“Many times just as I am falling asleep at night or even when I fall asleep during the day, I feel as though my body is paralyzed, and I cannot move. I can hear everything around me, and I can feel as though I am shouting out, but nothing is coming out of my mouth. This feeling will pass, usually in a few minutes, and I might fall asleep, or if I can just manage to move even a finger the feeling passes. Also, sometimes when I fall asleep, I feel as though I immediately start having a wild dream. Or sometimes when I’m falling asleep I feel as though I am dreaming with my eyes open, and I can’t tell the dream from reality.
Another strange thing that happens to me, but this happens when I am awake, is that if I become excited or start laughing at a joke or even when I get angry my knees buckle or I drop what I am holding because my muscles feel as though they are collapsing. Even if I meet a new person, and reach out my hand to shake theirs I might collapse to the ground due to excitement. This weakness in my muscles usually lasts just a few minutes, but I am not asleep during this time, and I can hear everything going on around me. One time I was fly fishing with my husband, and as I was standing in the river, I got so excited when I caught a fish that I collapsed in the water and hit my head on a rock. People who don’t know me think that I have fainted or that I am unconscious when I am not. Once a bystander even started cardiopulmonary resuscitation (CPR) when I had an episode. I have been told that these spells may be seizures, but no doctor has ever been able to find anything wrong. I must be very careful in controlling my emotions so that I don’t bring on one of these spells.”
As a footnote, Emma was evaluated in a Sleep Disorders Center, and as you might suspect, she did have narcolepsy as determined by her overnight sleep study and daytime MSLT. She now takes medications which successfully control her sleepiness and other symptoms. She is able to drive to see her husband and has never again found herself in her car sitting in someone’s living room.