• Shruti GOCHHWAL

What Is It Like Living With Narcolepsy?

Are you finding it difficult to sleep or falling asleep? Do you doze off anywhere, anytime without warning? These signs may suggest that you need to take rest in order to keep your sleep on track. But are you aware that conditions like troubled sleeping, sleep paralysis and hallucinations experienced more often can be a sign of narcolepsy? Well! Diagnosing a narcolepsy condition can take years as it is a very complex situation.

What is Narcolepsy?

Narcolepsy is a chronic neurological condition, where an individual often finds it difficult to stay awake for long periods of time.

There are two types of narcolepsy.

Type: 1- Narcolepsy that occurs with cataplexy (a sudden loss of muscle tone)

Type: 2- Narcolepsy without cataplexy.

Narcolepsy has no cure. However, certain medications and lifestyle changes can help you manage the symptoms.

What is it Like Living with Narcolepsy?

Narcolepsy is a chronic condition and in many cases, it takes a long time to diagnose the condition due to its complexity. A person living with narcolepsy may observe the following conditions

  1. Excessive daytime sleepiness. This is the most common symptom of narcolepsy where you may suddenly doze off while working or talking to your friends for a few minutes or up to a half-hour. You may feel refreshed when you awaken, but eventually, you get sleepy again. This is the first symptom to appear which can be troublesome to bear with, and can cause difficulty in concentrating.

  2. Sudden loss of muscle tone. Also called cataplexy, it is associated with a number of physical changes. If you have narcolepsy along with cataplexy then you experience complete weakness in your muscles and slurred speech which may last for a few minutes. Cataplexy can occur when you are at the peak of your emotions, like fear, laughter, excitement, surprise or extreme anger.

Example: Your friend cracked a joke and you begin laughing, a minute after that you notice your head drooping uncontrollably or your knees buckle suddenly. This is how people with narcolepsy may experience episodes of cataplexy. Cataplexy episodes may vary in individuals with few to numerous episodes.

  1. Sleep paralysis. A temporary inability to move or speak may be observed while falling asleep or upon waking. This may usually occur for a brief period of time but are often frightening. Sleep paralysis is similar to the type of immobility that usually occur when we are in REM sleep in which you may be aware of the condition but do not have control over it.

  2. Changes in rapid eye movement (REM) sleep. In a typical sleep cycle, we usually enter into early stages of sleep first and later into deeper stages of sleep. The REM stage is when most dreaming happens. People with narcolepsy can enter into REM sleep at any time of the day and can transition quickly to REM sleep, usually within 15 minutes of falling asleep. You may observe hypnagogic hallucinations happening any time when you fall asleep. Upon waking you may see hypnopompic hallucinations.

Example: You may feel as if there is a stranger in your bedroom. These delusions may be vivid and frightening, and may disrupt your sleep.

Living a life with narcolepsy is about understanding the impact of symptoms and looking for ways to live well with the disorder. Support from your healthcare provider, support groups and following a healthy lifestyle can help you face the challenges that come along with narcolepsy.

#Narcolepsy

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