Narcolepsy

What is Narcolepsy? Identifying symptoms & coping with it.

Narcolepsy is a chronic sleep disorder that is thought to be caused by a lack of brain chemicals known as hypocretin or orexin, which is known to regulate sleep and wakefulness. However, there’s no real findings backing this claim, hence rendering the cause of narcolepsy unknown. 

Hypocretin levels are more likely to decrease if an individual suffers from other sleep disorders, traumatic accidents or events. 

Individuals with narcolepsy often experience excessive daytime sleepiness and have uncontrollable segments of falling asleep during the day. Some of these sudden sleep attacks may occur when performing an activity, causing risk to the individual. 

Narcolepsy cases can range from mild to severe. In severe cases, it affects your social life, work, school, and overall well-being.

According to the latest statistics, this rare disorder is known to affect over 130,000 people in the US at one given time with more of them being females than males.

What Type of Disease is Narcolepsy?

Narcolepsy is a chronic neurological disorder that harrows your brains' ability to regulate sleep and wake-up cycles. You often feel relaxed after you wake up but then experience daytime sleepiness.

Individuals suffering from this disorder often fall asleep when in the middle of any activity, for example, eating, driving, or talking, thus affecting their productivity.

In a night of normal sleep, people without necromancy enter Rapid Eye Movement (REM) after an hour after sleeping. While for individuals' narcolepsy, REM sleep occurs within 15 minutes in the sleep cycle and intermittently during wake-up hours. It's during REM sleeps that you may experience vivid dreams and muscle paralysis occur. 

Types of Narcolepsy

According to the National Institute of Neurological Disorders And Stroke, there are several types of narcolepsy.

Type 1 narcolepsy or cataplexy

Type 1 narcolepsy is usually associated with a sudden loss of muscle strength. Note that not all patients with cataplexy are diagnosed with low levels of hypocretin.

Type 2 narcolepsy 

Individuals with the condition suffer from excessive daytime sleepiness, but they do not have muscle weakness triggered by emotions. They usually have less or normal levels of brain hypocretin. 

What are the Symptoms of Narcolepsy?

Narcolepsy has notable effects during both daytime and nighttime. Some of the most common symptoms include:

1. Excessive Daytime Sleepiness (EDS)

People with narcolepsy usually experience EDS whereby they suddenly get extreme urge to sleep, making it tough for them to work during the day. For most individuals with narcolepsy, these urges frequently arise in monotonous situations, causing drowsiness without alerting the individual. If the individual takes little naps, they usually feel relaxed.

2. Cataplexy 

Cataplexy is known as a sudden loss of muscle strength. It can range from drooping eyelids to a total body collapse

Intense emotions like fear and excitement can trigger cataplexy, but this varies from person to person, and it can happen to you several times a day or once a year. 

Note that cataplexy can occur later as the disease progresses, or it may never occur if you take medication like antidepressants to suppress it.

3. Sleep paralysis

Sleep paralysis is the inability to move or speak while falling asleep, waking, or sleeping. Here episodes only last for a few seconds or minutes. It mimics the paralysis seen during REM sleep, but it does not affect eye movement or the inability to breathe.

4. Poor regulated rapid eye movement (REM) sleep

At this stage, if you have narcolepsy, you may experience vivid dreams with loss of muscle strength. It often starts about 100 minutes after you fall asleep. But for people with narcolepsy, REM periods of sleep can happen at any time of the day for people 15 minutes after falling asleep.

5. Hallucinations while falling asleep

Most individuals with narcolepsy may experience vivid hallucination at the same time they experience sleep paralysis. The hallucination occurs when falling asleep or waking up.

6. Fragmented sleep  

Despite experiencing excessive daytime sleepiness, you may have difficulties falling asleep at night or experience no sleep at night.

7. Automatic behaviors

When an individual with narcolepsy suddenly falls asleep while doing an activity like eating, driving, or scrolling pages, they might continue doing the activity for a few seconds without consciously realizing what they are doing. People with narcolepsy are advised to avoid sleepiness triggers since they can cause severe injury or death while driving.

Narcolepsy is also associated with other conditions like

  • Restlessness leg syndrome
  • Insomnia
  • Obstructive sleep apnea

Despite a wide range of symptoms that you can present, you cannot present more than two symptoms at one time. For example, you may show cataplexy signs years after you have started experiencing EDS.

What Causes Narcolepsy?

Most people with narcolepsy Type 1 have deficiency in hypocretin, promoting wakefulness and controlling REM sleep. The levels of hypocretin are usually normal to people with narcolepsy but without cataplexy.

As earlier mentioned, causes of narcolepsy are not so clear, but some studies say that it can be a result of a combination of factors including the following.

Autoimmune disorders

 If you present cataplexy, the cause is usually the damage of brain cells that produce hypocretin. This is linked to abnormalities in the immune system. Autoimmune occurs when your body's immune system mistakenly turns against the healthy cells and tissue. Most researchers think that in people with narcolepsy, the body's immune system selectively attacks the brain cells containing hypocretin because of their genetic and environmental factors.

Genetics

Most people with narcolepsy are sporadic, meaning the disorders only occur when the individual comes from a family with narcolepsy genetic disorder. However, the chances of passing this genetic disorder to a family member are often less than 10%. Most people with cataplexy say that they have a close family member with similar symptoms.

Brain injuries

Narcolepsy can result from horrifying injury to parts of the brain that control wakefulness and REM sleep. Tumors and other diseases can be a major cause of narcolepsy as well.

How Narcolepsy is Diagnosed

A clinical examination and detailed patient medical history are vital for the diagnosis and treatment of narcolepsy. The doctors usually recommend people with narcolepsy to keep a sleep journal and take notes when they sleep and of symptoms they get over a week or month. Even though none of the major symptoms are absolute to narcolepsy, the journal comes in handy.

A doctor will rule it out by conducting a behavioral exam that can help to identify other neurological conditions that may be causing the symptoms. The behavioral exams include these two specialized tests.

Polysomnogram (PSG)

A Polysomnogram is a sleep study that’s done overnight to record brain and muscle activity while also focusing on your breathing, eye movements and oxygen levels. A PSG helps to reveal if the REMS occurs early in the sleep cycle and if the individual symptoms result from other conditions like insomnia and sleep apnea.

Multiple sleep latency tests (MSLT)

MSLT examines daytime sleepiness by computing how fast you fall asleep and if you set foot in REMS. During this test, you are requested to take at least five shorts each two hours separate over the entire day.

If you fall asleep in less than 10 minutes on average over the five naps, this is rendered excessive daytime sleepiness. If it happens within 15-20 minutes, at least twice over the five naps, it indicates abnormalities caused by narcolepsy. Doctors measure hypocretin levels in the fluid that surrounds the brain and spinal cord. To perform this test, the doctor will take a sample of the cerebrospinal fluid using a spinal tap.

If the patient has no other serious medical conditions, low hypocretin levels prove that the patient is suffering from Type 1 narcolepsy.

How is Narcolepsy Treated?

Despite there being no cure for narcolepsy, most symptoms can be managed with medication and lifestyle changes. Note that when cataplexy presents, the effect is irreversible and permanent. However, EDS and cataplexy can be regulated in most individuals with medication like:

Modafinil  

The first treatment primarily focuses on the central nervous system, using a stimulant such as Modafinil. It is often prescribed as the first medication since it is not addictive, and is known to have fewer side effects than other stimulants.

Amphetamine like stimulants

If Modafinil is not effective for the patient, the doctor may prescribe Amphetamine stimulants like methylphenidate to alleviate EDS. However, these medications have side effects such as irritability, shaking, heart rhythm, and nighttime sleep disruptions; therefore, the doctors keep an eye on the patients. 

Antidepressant 

There are two classes of antidepressants proven to regulate type 1 narcolepsy in most individuals effectively. 

Tricyclics: imipramine, desipramine, clomipramine, and protriptyline

Selective serotonin and noradrenergic reuptake: venlafaxine, fluoxetine, and atomoxetine

Sodium Oxybate

Sodium oxybate, also known as gamma hydroxybutyrate or GHB, is an FDA approved treatment for cataplexy and excessive daytime sleepiness. Sodium oxybate is a solid sedative for use at night. However, it is highly addictive and tightly restricted.

Pitolisant

Pitolisant is another treatment commonly referred to as Wakinx. It releases histamines in the brain to decrease daytime sleepiness. It’s also an FDA approved drug for narcolepsy. Its side effects include headache, nausea, anxiety, and lack of sleep.

Lifestyle Approach Treatment

Most people with narcolepsy cannot consistently maintain a normal state of alertness even with the available medications. Drug therapy demands certain changes. Here are some specific lifestyle changes that may be helpful.

Take short naps regularly. This helps to refresh the mind and reduce EDS. School accommodation may be helpful to make time for naps.

  • Maintain a regular sleep schedule: maintaining a good sleep schedule for bedtime and waking up helps ensure you sleep in a minimal distraction and disruptions.
  • Avoid caffeine and alcohol before bedtime: caffeine helps you stay awake; therefore, avoid it for several hours, thus ensuring you have a goodnight sleep.
  • Exercise daily: exercising helps improve sleep quality and prevents weight gain.
  • Avoid taking heavy meals before bed: overeating only makes it harder for you to sleep.
  • Relax before going to sleep: relaxing activities such as taking a warm bath and ensuring the sleeping space is clean and comfortable helps promote sleepiness.

Effects of Narcolepsy

Narcolepsy can have a severe effect on an individual's health and wellness. If you have narcolepsy, accidents are a pressing concern since the condition can threaten your life while performing activities like driving or operating industrial machines. People with narcolepsy should therefore avoid handling heavy or dangerous items as well as driving. 

Drowsiness can affect a student's performance making narcolepsy a threat to one’s education. 

According to Harvard, most those with narcolepsy are at a higher risk of other health conditions like depression, obesity, cardiovascular issues, high blood pressure, anxiety, and hyperactivity disorder.

Are Narcolepsy Symptoms Different in Children?

Narcolepsy symptoms vary in children and adults. In children, excess sleepiness is more likely to appear as excitement or irritability. It is characterized as a behavioral disorder. At night, a child with narcolepsy may sleep longer and have less movement during sleep.

In children, cataplexy is more common, although it occurs in up to 85% of cases. It involves the facial expression instead of the body, and it may be perceived as a facial attachment since it is tied up with emotional response. With time symptoms in children evolve to their more early and normal form. 

When to Seek Medical Attention

If you're suffering from narcolepsy, you're at risk of developing a long list of health complications. Therefore, when you notice abnormal sleeping patterns, visit the doctor immediately. It might be something as minor as stress or it could be narcolepsy. Your doctor take you through physical therapy to determine the cause of your sleeping problem and the best way to address it. If your doctor thinks you have a critical sleeping disorder, you might require more comprehensive tests and treatments.

Other Sleep Disorders

References

1.Narcolepsy Fact Sheet  

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet

2.Sleep effects on breathing and respiratory diseases

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2876696/

3. Understanding Narcolepsy

http://healthysleep.med.harvard.edu/narcolepsy/what-is-narcolepsy/understanding

4.Narcolepsy

https://www.sleepfoundation.org/narcolepsy#:~:text=It%20is%20estimated%20that%20people,behavioral%20problems%2C%20especially%20in%20children.