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How To Have A Simple Life When You Have Narcolepsy

by Eric Martin
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Narcolepsy

Narcolepsy Introduction

Narcolepsy is when adults discover their excessive sleeping when they feel extreme drowsiness during the day. When kids sleep it might be because they tire themselves a lot, but most adults who suffer from narcolepsy have a major problem regarding their daily routine. Fatigue stops them from completing their work. 

It is a rare condition that affects 1 out of 2000 people. It is not hard to know when you struggle with narcolepsy. Rather it is a bit hard but doable to have a simple life after you have your narcolepsy diagnosis. 

Narcolepsy Can Have Types

  • Type 1 is the most common. It includes a symptom called cataplexy, or sudden loss of muscle tone. People with this type of narcolepsy have episodes of extreme sleepiness and cataplexy during the daytime due to low levels in the brain of a protein called hypocretin. (Hypocretin is sometimes referred to as orexin.)
  • Type 2 is narcolepsy without cataplexy. Usually, people with type 2 narcolepsy have normal levels of hypocretin.

Narcolepsy Symptoms:

How often and how intensely Narcolepsy Symptoms occur can vary. Below are common 

Significant Daytime Sleepiness

This is a key symptom of narcolepsy. Furthermore, almost everyone with this medical condition has excessive daytime sleepiness (EDS), in which you suddenly experience an overwhelming urge to sleep. EDS makes it difficult to function properly during the day.

Cataplexy

Cataplexy is a sudden, temporary loss of muscle tone. It can range from drooping eyelids (referred to as partial cataplexy) to total body collapse.

Laughing and intense emotions, such as excitement and fear, can trigger cataplexy. How often it occurs varies from person to person. It can happen several times a day to once a year.

Sometimes cataplexy may occur later in the disease course or may go undetected due to medications that suppress it, such as certain antidepressants. 

Poorly Regulated Rapid Eye Movement (REM) Sleep

REM sleep is the sleep stage when you have vivid dreams with a loss of muscle tone. It usually starts about 90 minutesTrusted Source after you fall asleep. REM sleep can happen at any time of day for people with narcolepsy, often within about 15 minutes after falling asleep.

Sleep Paralysis

Sleep paralysis is an inability to move or speak while falling asleep, sleeping, or waking. Episodes last only a few seconds or minutes.

Sleep paralysis mimics the paralysis seen during REM sleep. It doesn’t affect eye movements or the ability to breathe, though.

Hallucinations When Falling Asleep

People with narcolepsy may frequently have vivid dreams that may occur when falling asleep or waking up.

Fragmented Sleep

Although people with narcolepsy are excessively sleepy during the daytime, they may have difficulty falling asleep and/or staying asleep at night.

Automatic Behaviors

After falling asleep during an activity like eating or driving, a person with narcolepsy may continue doing that activity for a few seconds or minutes without consciously realizing they’re doing it.

Narcolepsy can also be associated with other sleep conditions, such as:

Obstructive Sleep Apnea

Restless Leg Syndrome

Insomnia

Why does Narcolepsy Affect Our Nervous System?

What Causes Narcolepsy?

The exact cause of narcolepsy is unknown. However, most people with type 1 (narcolepsy with cataplexy) have a decreased amount of a brain protein called hypocretin. One of the functions of hypocretin is regulating your sleep-wake cycles. 

Scientists think many factors may cause low hypocretin levels. A gene mutation is associated with low levels of hypocretin. It’s believed that this hereditary deficiency, along with an immune system that attacks healthy cells (i.e an autoimmune issue), contributes to narcolepsy.

Other factors, such as stress, brain trauma, exposure to toxins, and infection, may also play a role.

Risk factors

Some of the risk factors for narcolepsy may include the following:

Family History If you have a first-degree family member (like a parent or sibling) with narcolepsy, you could be 40 times more likely to have the condition. But the percentage of cases that run in families is small.

Age There are two peak periods of diagnosis for narcolepsy: around age 15 and around 36. However, narcolepsy is commonly underdiagnosed or misdiagnosed.

Previous Brain Trauma In rare instances, narcolepsy can occur after severe trauma to areas of the brain that regulate wakefulness and REM sleep. Brain tumors may also cause narcolepsy.

Diagnosing Narcolepsy

If you’re experiencing excessive daytime sleepiness or one of the other common symptoms of narcolepsy, talk with your doctor.

Daytime sleepiness is common in many types of sleep disorders. Your doctor will ask you about your medical history and perform a physical exam. They’ll look for a history of excessive daytime drowsiness and episodes of a sudden loss of muscle tone.

Your doctor will likely order an overnight sleep study, a daytime test as well as several other tests to determine and confirm their diagnosis.

Here are Some Common Sleep Evaluations Your Doctor May Order:

  • Polysomnography (PSG) testing requires you to spend the night in a medical facility. Clinicians will monitor you and use electrodes while you sleep to measure your brain activity, heart rate and rhythm, eye movement, muscle movement, and breathing.
  • Your doctor will ask you for a detailed sleep history, which may include completing the Epworth sleepiness scale (ESS). The ESS is a simple questionnaire. It asks how likely you are to sleep in different circumstances.
  • Your doctor may ask you to keep a detailed diary of your sleep pattern for about a week. This sleep record will help show your doctor the correlation between your alertness and your sleep pattern.
  • An ActiGraph or other home monitoring system can keep track of how and when you fall asleep. This device is worn like a wristwatch and may be used together with a sleep diary.
  • A multiple sleep latency test (MSLT) determines how long it takes you to fall asleep during the day and how quickly you enter REM sleep. This test is often given the day after a PSG. You’ll need to take four to five naps throughout the day, each 2 hours apart.
  • Your doctor might use a spinal tap, or lumbar puncture, to collect cerebrospinal fluid (CSF) to measure your hypocretin levels. Hypocretin in CSF is expected to be low in people with type 1 narcolepsy. For this test, your doctor will insert a thin needle between two lumbar vertebrae. However, it’s not commonly done in clinical practice to diagnose narcolepsy.

What are the Side Effects of Narcolepsy Medication?

The treatment of narcolepsy generally includes making changes to lifestyle such as cultivation of good sleeping habits, speaking with other people etc. The use of certain medication such as stimulants, antidepressants can also be used in treating this sleeping disorder. For example, a few common narcolepsy medications include armodafinil and modafinil. However, you must remember that taking these drugs can lead to several side-effects.  Some of the side effects of narcolepsy medication are as follows. 

  1. Feeling of being nervous 
  2. Nausea 
  3. Insomnia or unable to sleep in the night 
  4. Experiencing weight loss 
  5. Pain in the stomach 
  6. Irritability 
  7. Headaches 

More importantly, if in case you are wondering what else does narcolepsy drugs treat then, you must be aware that they help in providing relief from symptoms of medical conditions such as sleep paralysis, cataplexy, and hypnagogic hallucinations. 

Preventing and Living with Narcolepsy

  • Take regular naps during the day.
  • Follow a regular sleep schedule.
  • Follow any treatment plan a doctor recommends.
  • Exercise every day for at least 20 minutes, but stop exercising 4–5 hours before bedtime.
  • Avoid caffeine or alcohol several hours before going to bed.
  • Avoid smoking, especially before bedtime.
  • Plan to relax before going to bed, such as by taking a bath.
  • Ensure that the bedroom is at a comfortable temperature.
  • Take precautions when driving. 
  • Avoid eating heavy meals near bedtime.

Some are the Alternative of Narcolepsy or Sleep Disorder 

Hypersomnia
ADHD
Sleep Apnea

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