Narcolepsy (Uncontrollable daytime sleepiness)

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 not all patients with narcolepsy may experience all 5 symptoms, excessive daytime sleepiness (EDS) is common. Symptoms of narcolepsy may develop suddenly over a few weeks or slowly over a number of years and may include:

1. Cataplexy
   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. Symptoms may include:
   • 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 years.

2. Hallucinations
   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 occur as you’re falling asleep, they are called hypnagogic hallucinations. If they happen when you’re waking up, they are called hypnopompic hallucinations.
3. Excessive daytime sleepiness (EDS)
   Most patients with narcolepsy experience this symptom. EDS interferes with everyday activities, even if sufficient sleep is obtained at night. The lack of energy, concentration difficulties, memory lapses, and feelings of depression and exhaustion make it challenging to perform daily activities.
4. Sleep attacks
   Individuals with narcolepsy often experience sudden intervals of falling asleep without warning, which can occur at any time. The duration of these sleep attacks varies from person to person, lasting from seconds to several minutes. These attacks may happen multiple times a day if narcolepsy is not well controlled or treated.
5. Sleep paralysis
   People with narcolepsy may experience episodes of sleep paralysis, which is a temporary inability to move or speak while falling asleep or waking up. These episodes may last a few seconds to several minutes. Although being unable to move can be frightening, sleep paralysis does not cause harm.

Other symptoms
Narcolepsy can also cause a number of other symptoms, including:

• Memory problems
• Depression
• Headaches
• Automatic behavior - performing tasks and suddenly falling asleep without consciously realizing it.

Over 50% of narcolepsy cases remain undiagnosed because individuals may feel embarrassed by their experiences. Do not hesitate to seek expert advice if you are experiencing any of the above symptoms.

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The exact cause of narcolepsy is unknown. However, many people with narcolepsy have a reduced amount of a brain chemical known as hypocretin (orexin), which helps regulate sleep-wake cycles. Some experts believe that the deficiency of hypocretin levels, along with an immune system that attacks healthy cells (i.e., an autoimmune issue), contributes to narcolepsy, although this is not the case for all individuals.

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 helps maintain stability and balance in our bodies.
• Brain Tumor: Narcolepsy due to brain tumors is usually seen in children.
• Encephalitis: Inflammation of the brain, mostly due to infection.
• Multiple Sclerosis: An autoimmune disease that damages the central nervous system.
• Demyelinating Disorders: A neurological condition that damages the protective covering (myelin sheath) surrounding nerve fibers in the brain, eyes (optic nerves), and spinal cord.
• Encephalomyelitis: Inflammation in the brain and spinal cord that damages the protective covering (myelin sheath) of nerve fibers.
• Inherited Disorders: Disorders like Niemann–Pick disease type C can also cause narcolepsy.

Did You Know?

Many patients with narcolepsy also experience fragmented sleep, other sleep disorders, and obesity, likely as a consequence of orexin deficiency. Depression, anxiety, and other psychiatric problems are also common in these patients.

Risk Factors for Narcolepsy

Certain factors can increase the chance of narcolepsy, including:

• Family history: Your risk of developing narcolepsy is 20 to 40 times higher if you have a family history of the condition. However, narcolepsy is not classified as a genetic disorder.
• Previous brain trauma: In rare instances, narcolepsy can develop after severe trauma to areas of the brain that regulate sleep-wake cycles. There have also been reports of brain tumors contributing to narcolepsy.
• Possible triggers: Recent studies have identified infectious diseases, such as streptococcal infections or H1N1 infections, as well as vaccinations, that may trigger an autoimmune response leading to the selective destruction of hypocretin, which can result in narcolepsy.
• Environmental toxins: Research indicates that exposure to insecticides, heavy metals, and herbicides may be linked to the development of narcolepsy.

Did you know?

Narcolepsy can occur as early as five years of age. Type 1 narcolepsy (narcolepsy with cataplexy) affects 50 per 100,000 people. It typically begins in the teens and early twenties, but it can occasionally manifest 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 and encephalitis. Daytime sleepiness can also be a common side effect of certain medications. The diagnosis of narcolepsy includes:

1. History Taking
   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 conditions, if any
2. Blood Tests
   These tests are recommended to rule out any underlying health problems. They include:
   • Thyroid profile test
   • Complete blood count (CBC)
3. Imaging Tests
   These tests help determine if there are any problems with the brain or nerves that may be responsible for sleep issues. Imaging tests that are generally advised include:
   • Computerized tomography scan (CT)
   • Magnetic resonance imaging (MRI)
4. Sleep Record Tests (Sleep Log)
   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 both the daytime and nighttime.
5. Wrist Actigraphy
   This device is used to detect movements during sleep. An actigraph is worn on the wrist during sleep to track your sleeping pattern. It also records body movements and can help distinguish wakefulness from sleep.
6. Polysomnography
   The polysomnography (PSG) test requires you to spend a night in a sleep center or medical facility. It records parameters such as 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, which is common in people with narcolepsy. This is one of the essential tests to confirm narcolepsy.
7. Multiple Sleep Latency Test (MSLT)
   MSLT measures how quickly and easily you fall asleep during the day. You may have this test after polysomnography. You will need to take several naps throughout the day, and an expert will analyze how quickly you enter into a sleep cycle.
8. Measuring Hypocretin Levels
   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 sleep schedule by going to bed and waking up at the same time every day to keep your biological clock in order.
• Practice a relaxing pre-bedtime ritual such as taking a bath, reading, or listening to soft music to reduce stress and improve sleep quality.
• Sleep in a completely dark room to promote the secretion of melatonin, which regulates the sleep-wake cycle.
• Avoid using cell phones and watching TV before bedtime, as the light from screens interferes with melatonin release.
• Steer clear of caffeine, nicotine, and alcohol in the evening, as these substances can disrupt your sleep cycle.
• Avoid large meals and beverages before bedtime to reduce the urge to use the restroom during the night.
• Maintain an active lifestyle during the day to improve your sleep cycle.

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Narcolepsy is a chronic neurological condition. Although there is no permanent cure for it, the following treatment options can help you manage your symptoms. The treatment includes:

Medications

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:
  • Modafinil
  • Pitolisant
  • Methylphenidate
  • 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:
  • Imipramine
  • Clomipramine
  • Protriptyline
  • Venlafaxine
  • Fluoxetine
  • Atomoxetine

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Newer Advancements

These are drugs that are still in development but have shown promising results in animal models:

• Orexin-based therapy: It is used to treat narcolepsy type 1 due to orexin deficiency. ORX-A replacements are given intravenously or intranasally (in monkeys) to reduce the effects of sleep deprivation on cognitive performance.
• Immune-based therapy: Immunotherapy is considered a promising future therapeutic option. Drugs like natalizumab, fingolimod, abatacept, and monoclonal antibodies can be used to treat narcolepsy.

Medications should accompany various lifestyle changes. Consider the strategies mentioned below to help manage the condition better:

• Take short naps: Frequent, brief naps at times when you tend to feel sleepiest can be beneficial.
• Follow a strict bedtime routine: Going to bed and waking up at the same time every day can improve sleep quality.
• Keep your bedroom only for sleep: Use your bed solely for sleep; avoid using cell phones or laptops in bed to help your brain associate the bed with sleep.
• Avoid caffeine before bed: Steer clear of beverages such as colas, coffee, teas, energy drinks, and chocolate shakes for several hours before bedtime.
• Avoid alcohol and smoking: Especially in the late evening, as they can prevent deep sleep.
• Stay active: Engage in at least 20 minutes of exercise daily, but avoid exercising close to bedtime.
• Don’t eat heavy meals close to bedtime: Heavy meals can make sleeping uncomfortable.
• Relax before bedtime: Consider taking a warm bath, meditating, reading, or listening to soft music.

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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:

• Accidents: Fatal road accidents can occur due to excessive sleepiness and cataplexy.
• Heart disease: Narcolepsy has been linked to higher rates of hypertension. Excessive sleepiness can also affect inflammatory markers, increasing the risk of heart disease.
• Obesity: Individuals with narcolepsy often become overweight due to lower activity levels and orexin deficiency. In the long term, a slower metabolism can lead to obesity.
• Stress and anxiety: Narcolepsy may contribute to mental health disorders such as stress and anxiety. Depression is also common among those with narcolepsy. Uncontrolled sleep attacks can impair decision-making, damage relationships, and decline overall quality of life.
• Poor performance: The ability to concentrate is crucial for learning and academic achievement. However, sleep attacks and other symptoms of narcolepsy can reduce attention and focus, leading to poor performance.

Narcolepsy requires both medical and lifestyle management. In addition to these approaches, several alternative therapies may help manage the symptoms of narcolepsy. They include:

• MR Therapy (Meditation and Relaxation)
  One effective remedy is meditation and relaxation therapy. MR therapy, particularly mindfulness-based meditation, helps ease psychological stress, including anxiety, depression, and symptoms of narcolepsy. Steps for mindfulness meditation include:
  
  • Sit or lie in a comfortable position.
  • Focus on your natural breathing—inhale and exhale.
  • Allow your thoughts (positive or negative) to come and go without judgment.
  • Keep your body calm and relaxed.
• Sleep-Inducing Teas
  Some individuals with narcolepsy experience disturbances in night sleep or have difficulty sleeping at night. Teas such as chamomile, passion flower, red ginseng, peppermint, and lavender can promote better sleep.
• Acupuncture and Acupressure
  These therapies are ancient healing arts rooted in traditional Chinese medicine. Acupressure helps relieve muscle tension and pressure points while encouraging blood circulation by applying pressure to specific areas of the body. In acupuncture therapy, thin needles are inserted into the body to alleviate symptoms of narcolepsy, including stress and anxiety.

Narcolepsy can take a toll on mental health, and the embarrassment surrounding it often prevents individuals from opening up about 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.

Tips for Caregivers:

• Learn everything you can about narcolepsy.
• Inquire if they need assistance and provide it, but don't hover.
• Offer to assist in organizing 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 bring joy to both of your lives.
• Give your loved one a pat on the back, even for minor accomplishments.

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