Narcolepsy is a rare neurological disorder that causes a sudden attack of sleep. It affects your brain’s ability to wake and fall asleep at inappropriate times. People with narcolepsy often find it difficult to stay awake during the day, causing excessive daytime sleepiness.
The exact cause of narcolepsy is unknown. However defienyOther symptoms may include frequent uncontrollable sleep attacks, sudden and temporary loss of muscle tone (cataplexy), vivid dream-like images (hallucination), and temporary inability to move or speak while falling asleep (sleep paralysis). It is difficult to perform daily routine work with narcolepsy.
Narcolepsy can be diagnosed and confirmed by the polysomnogram (PSG) and the multiple sleep latency tests (MSLT). However, a combination of lifestyle approaches and medicine can help you to live better with narcolepsy.
Global: 1 in 2,000 (2017)
There are 5 signs and symptoms of narcolepsy, often represented by the acronym CHESS (cataplexy, hallucinations- usually visual, excessive daytime sleepiness, sleep paralysis, and sleep disruption). While all patients with narcolepsy may not experience all 5 symptoms except excessive daytime sleepiness (EDS). Symptoms of narcolepsy may develop suddenly over the course of a few weeks, or slowly over a number of years that may include:
Cataplexy is sudden, temporary muscle weakness or loss of muscle tone. It can cause problems ranging from drooping eyelids to total body collapse, depending on the muscles involved. It also includes symptoms like:
Jaw-dropping
Head slumping down
Legs collapsing uncontrollably
Slurred speech
Note: These symptoms are often triggered by strong emotions such as fear, laughter, excitement, or anger. After the onset of EDS, symptoms of cataplexy may appear for weeks or even for years.
When going to sleep or waking up, a person with narcolepsy may see or hear things that are not real. These delusional experiences are often vivid and frightening. If these delusions happen as you’re falling asleep are called hypnagogic hallucinations. If this happens when you’re waking up, then it is called hypnopompic hallucination.
Most patients with narcolepsy have this symptom. EDS would interfere with everyday activities, even if you get enough sleep at night. The lack of energy, and concentration, memory lapses, and feeling depressed and exhausted makes it very difficult to perform daily activities.
In general, people with narcolepsy will experience sudden intervals of falling asleep, without warning. They may happen at any time. The length of these sleep attacks varies from person to person. It can last from seconds to several minutes. These sleep attacks may happen several times a day if narcolepsy is not well controlled or treated.
People with narcolepsy may experience episodes of sleep paralysis. Which means a temporary inability to move or speak while falling asleep or waking up. These episodes may last a few seconds to several minutes. Being unable to move can be frightening, although sleep paralysis does not cause any harm.
Narcolepsy can also cause a number of other symptoms that include:
Memory problems
Automatic behavior- performing any task and suddenly falling asleep without consciously realizing they’re doing it.
Over 50% of narcolepsy cases remain undiagnosed because people feel embarrassed by the experience. Do not hesitate to take expert advice if you are facing any of the above-mentioned symptoms.
Narcolepsy can be classified into the following:
This type comes without warning. It is characterized by a loss of muscle tone that causes weakness and makes you unable to control your muscles (cataplexy). People with this condition have high levels of hypocretin (and also muscle weakness triggered by emotions
Individuals with type 2 narcolepsy have excessive sleepiness during the daytime but do not have cataplexy (sudden muscle weakness). They usually have fewer chronic symptoms and normal brain hormone hypocretin levels.
This type is the rarest one. It may result from an injury to a deep part of the brain called the hypothalamus that regulates sleep. It may also be caused by a brain tumor or brain inflammation called encephalitis. Apart from narcolepsy’s usual symptoms, individuals may also have severe neurological problems and long periods of sleep (more than 10 hours) each night.
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The exact cause of narcolepsy is unknown. However, many people with narcolepsy have less amount of a brain chemical known as hypocretin (orexin). It helps in regulating your sleep-wake cycles. Some experts believe that the deficiency of hypocretin levels and an immune system that attacks healthy cells (i.e an autoimmune issue), contributes to narcolepsy. But that is not the cause in all cases.
Causes of secondary narcolepsy
Sometimes narcolepsy can occur as a result of underlying conditions that alter the production of hypocretin levels in the brain. For example, narcolepsy can develop after the following:
Head injury: Including trauma to the cranium and intracranial structures (Brain, Cranial nerves, meninges, and other structures)
Hypothalamic lesions: Abnormal growth in the hypothalamus gland, which is located in the brain that helps to maintain the stability and balance in our bodies.
Brain tumor: Narcolepsy due to brain tumors is usually seen in kids.
Encephalitis: Inflammation of the brain, mostly due to infection.
Multiple sclerosis: It is an autoimmune disease that damages the central nervous system.
Demyelinating disorders: A neurological condition that causes damage to the protective covering (myelin sheath) that surrounds nerve fibers in the brain, eyes (optic nerves), and the spinal cord.
Encephalomyelitis: It refers to the inflammation in the brain and spinal cord that damages (myelin sheath )the protective covering of nerve fibers.
Inherited disorders: Disorders like Niemann–Pick disease type C can also cause narcolepsy.
Did you know?
Many patients with narcolepsy also have fragmented sleep, other sleep disorders, and obesity, probably as a consequence of orexin deficiency. Depression, anxiety, and other psychiatric problems are also common in these patients.
Certain factors can increase the chance of narcolepsy such as the following:
Family history: Your risk of getting narcolepsy is 20 to 40 times higher if you have a family history of it. However, narcolepsy is not a genetic condition.
Previous brain trauma: In rare cases, narcolepsy can occur after severe trauma to areas of the brain that regulates sleep-wake cycles. In a few cases, it is reported that brain tumors may also cause narcolepsy.
Possible triggers: Recent studies found that Infectious diseases such as streptococcal infection or HIN1 infection, as well as vaccination, may trigger an autoimmune response with selective destruction of the hypocretin that can lead to narcolepsy.
Environmental toxins: Studies have shown that exposure to insecticides, heavy metals, and weed killers may cause narcolepsy.
Did you know?
Narcolepsy can occur as early as five years of age. Type 1 (narcolepsy with cataplexy) affects 50 per 100,000 people. It usually begins in the teens and early twenties, but occasionally occurs as early as five years of age or after 40 years.
Diagnosis of narcolepsy can be quite tricky as it mimics other health conditions like depression, encephalitis, etc. Daytime sleepiness can also be a common side effect of certain medicines. TDiagnosis of narcolepsy includes:
The diagnosis of narcolepsy includes taking an extensive history of the patient that includes questions like:
Duration of sleep during the nighttime
Frequency of having difficulty sleeping
Daytime napping
Any stressful event in the recent past
Medical condition if any
These tests are recommended to rule out any underlying health problems. They include:
This helps to determine if there are any problems with the brain or nerves that may be responsible for problems with sleep. Imaging tests that are generally advised include:
Your doctor will ask you to keep a journal of your sleep pattern for about a week. In that, you need to record the time at which you fall asleep, and the duration of sleep during the daytime as well as nighttime.
It is a device used to detect movements during sleep. An actigraph is worn on the wrist during sleeping to keep track of your sleeping pattern. It also records body movements and can help distinguish wakefulness from sleep.
The polysomnography (PSG) test requires you to spend a night in a sleep center or medical facility. It is used to record a set of parameters like brain waves, breathing, oxygen levels, heart rate, and eye and leg movements during sleep. This test reveals how quickly you fall asleep, how often you wake up during the night, and how often your sleep is disturbed (a common finding in people with narcolepsy). This is one of the essential tests to confirm narcolepsy.
MSLT measures how quickly and easily it takes you to fall asleep during the day. You may have this test after polysomnography. You’ll need to take several naps throughout the day, and an expert will analyze how quickly you enter into a sleep cycle.
Experts believe that in many cases, narcolepsy is linked to a deficiency of hypocretin, also known as orexin, which regulates sleep-wake cycles. Measuring your level of orexin can be useful in diagnosing narcolepsy. A sample of cerebrospinal fluid (CSF) is removed using a needle during a procedure called a lumbar puncture and then tested for hypocretin levels.
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Since the actual cause of narcolepsy is unknown, it is difficult to prevent it. However, here are a few effective habits that you can adopt to ensure that you get a good night’s sleep.
Avoid daytime naps
Fix your time for sleep. This includes sleeping and waking up at the same time every day. It keeps your biological clock in order.
Practicing a relaxing pre-bedtime ritual such as taking bath, reading, or listening to soft music helps to reduce your stress and improve sleep at night.
Sleep in a completely dark room as it will help in secreting melatonin hormone (it regulates the sleep-wake cycle) and promotes sound sleep.
Avoid using cell phones and watching TV prior to sleep time. The light from the screen interferes with the release of the melatonin hormone.
Avoid caffeine, nicotine, and alcohol at night or late evening as they can make you feel active and disturb your sleep cycle.
Avoid large meals and beverages before bedtime as it will stop your urge of using the washroom at night during sleep.
Avoid a sedentary lifestyle and stay active during the daytime, as it can improve your sleep cycle.
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Your general physician is the first doctor you may need to consult, other specialists who can help in the diagnosis and treatment of narcolepsy and its related health complications are:
General physician
Sleep specialist
Neurologist
Psychiatrist
Psychologist
A sleep specialist is a doctor who diagnoses and treats sleep disorders. A neurologist treats disorders that affect the brain, spinal cord, and nerves. A psychiatrist is a doctor who is trained to treat people with mental illness. A psychologist is a person who specializes in the study of mind and behavior.
There is no shame in asking for help. Individuals with narcolepsy are too conscious to talk about their symptoms. Take advice from an experienced medical professional to understand your condition and manage it better.
Narcolepsy is a chronic neurological condition. Although there is no permanent cure for it, following treatment options can help you manage your symptoms. The treatment includes;
There are several classes of medications used to treat narcolepsy, such as
Stimulants: These medicines stimulate your central nervous system, which can help keep you awake during the day. Drugs include:
Pitolisant
Sodium oxybate
Solriamfetol
Antidepressants: Tricyclic antidepressants and Selective serotonin and noradrenergic reuptake inhibitors are two classes of antidepressant drugs that have proven effective in controlling symptoms of narcolepsy in many individuals. Drugs include:
Protriptyline
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These are drugs that are still in development, but have shown some good results in animal models.
Medications should accompany various lifestyle changes. Consider the strategies mentioned below to help manage the condition better:
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Narcolepsy is associated with long-term effects on health and well-being. The immediate effects include poor performance, daytime sleepiness, inability to perform daily household tasks, and fatigue. The long-term complications include:
Fatal road accidents are caused due to excessive sleepiness and cataplexy.
Narcolepsy has also been linked to higher rates of hypertension. Moreover, excessive sleepiness can affect inflammatory markers, which in turn can increase the risk of heart disease.
People with narcolepsy usually become overweight because of lower activity levels and orexin deficiency. In the long term, their slower metabolism can cause obesity.
Narcolepsy may lead to mental disorders such as stress and anxiety. However, depression is also common in people with narcolepsy. Uncontrolled sleep attacks can impair decision-making, damage relationships, and decline the overall quality of life.
The ability to concentrate is essential to learning and academic achievement. However, sleep attacks and other symptoms of narcolepsy can reduce attention and focus leading to poor performance.
Narcolepsy needs both medical and lifestyle management. Along with those there are a few alternative therapies that may help you to manage the symptoms of narcolepsy. They include:
One of the easy and effective remedies is meditation and relaxation therapy. MR therapy, especially mindfulness-based meditation helps ease psychological stress including anxiety, depression, and symptoms of narcolepsy. Steps for mindfulness meditation include:
In a few cases, people with narcolepsy have seen a disturbance in night sleep, or are unable to sleep at night. Teas like chamomile (babunah ke phul) tea, passion flower tea, red ginseng, peppermint (pudina) tea, and lavender tea can promote good sleep at night.
These therapies are ancient healing arts based on components of traditional Chinese medicine. Acupressure helps to release tension in the muscles and pressure points and to encourage blood circulation by pressing certain areas of your body. In acupuncture therapy, thin needles are inserted into the body to ease the symptoms of narcolepsy including stress, and anxiety.
Narcolepsy can take a toll on mental health, and with the embarrassment surrounding it individuals do not really open up and tell their symptoms. Social life can be impacted when sleepiness and other symptoms interfere with conversations, social events, and relationships.
If you notice your loved ones having bouts of sleep try talking to them or taking them to a doctor for the correct diagnosis and treatment.
These are certain simple ways you can assist a loved one suffering from narcolepsy:
Learn everything you can about narcolepsy.
Inquire if they need assistance and provide it, but don't hover.
Offer to assist in the organizing of duties such as bill payment and domestic chores.
Stick sticky notes around the house and keep a calendar of essential appointments.
Deliver a tasty meal every now and then, along with some nutritious snacks.
Enjoy a movie together at home or do something that will offer joy to their and your lives.
Give your loved one a pat on the back, even for minor accomplishments.
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