What Is Living with Narcolepsy Really Like?

Narcolepsy affects approximately 200,000 Americans and three million people worldwide.

Have you recently been diagnosed with narcolepsy? Do you have a friend or loved one who has? Either way, the more informed you are about this disease, the easier it is to handle it.

Read on to learn more about what living with narcolepsy is like, as well as how it can be managed in an effective way.

What Is Narcolepsy?

Narcolepsy is a chronic neurological condition. It’s also known as hypersomnia and is characterized by excessive feelings of sleepiness during the daytime when one is supposed to feel alert.

For people without this condition, it takes about 90 minutes for them to enter REM sleep (the stage of sleep where dreams occur). In those with narcolepsy, REM sleep occurs within about 15 minutes of falling asleep. It occurs during waking hours on an intermittent basis too.

There are three different types of narcolepsy, and they are as follows:

  • Type 1: Narcolepsy with cataplexy (sudden muscle weakness followed by full awareness)
  • Type 2: Narcolepsy without cataplexy (this form primarily involves excessive sleepiness during the daytime)
  • Secondary narcolepsy: This type often is the result of an injury to the brain, specifically the hypothalamus, which is associated with sleep

It’s not clear exactly what causes narcolepsy. Some experts believe, though, that it is the result of a deficiency in the chemical hypocretin. Hypocretin is necessary for helping us to feel awake and alert.

Narcolepsy Symptoms

If someone is struggling with narcolepsy, the most noticeable symptom they’ll experience is excessive feelings of tiredness during the day (even after getting a full night’s sleep).

There are some other symptoms associated with this condition, though, including the following:

  • Hallucinations
  • Sleep paralysis
  • Difficulty sleeping at night
  • Memory problems

Some people experience narcolepsy alongside other sleep disorders, such as REM sleep behavior disorder or sleep apnea.

Diagnosing Narcolepsy

If you suspect that you have narcolepsy (or that someone you love has it), it’s important to see a doctor right away. They’ll perform one (or possibly more) of these tests to determine whether or not it’s the cause of your symptoms:

  • Epworth Sleepiness Scale: This requires you to answer eight questions on a scale of zero to three, with a final score falling somewhere between zero and 24 (the higher the score, the greater the likelihood someone has narcolepsy)
  • Polysomnogram: This is a test performed in a sleep lab to monitor a person’s brain waves and breathing patterns
  • Multiple Sleep Latency Test: This is another sleep lab test that monitors the amount of time it takes for a person to fall asleep

Your doctor will also likely ask you to record a sleep diary prior to undergoing these tests. This gives them more insight into your sleep patterns to help them with a formal diagnosis.

What Is Living with Narcolepsy Like?

You might have concerns about what your life will look like with narcolepsy, or you might want to understand a loved one’s experience better. Either way, here’s some insight into living with narcolepsy:

Personal Impact

Narcolepsy can seriously impact someone’s personal life.

They may experience difficulty focusing or remembering things, for example. This, in turn, can lead to feelings of self-doubt and a lack of self-confidence, even in areas in which the person knows they’re proficient.

Social Impact

Having narcolepsy can put a damper on one’s social life, too.

They might have difficulty staying awake during social activities, for example, and they may end up isolating themselves to avoid the awkwardness that can accompany falling asleep by accident.

They may need to take naps at inconvenient times during the day, too, and they may experience confusion or mood swings upon waking that can be frustrating to friends and loved ones.

Work/School Impact

Living with narcolepsy can cause a person to have trouble performing as well as they’d like at work or school (especially if their condition hasn’t been diagnosed and they don’t have accommodations in place to help them).

They may also feel embarrassed about falling asleep during meetings or classes. They may even find themselves avoiding certain activities to try and save themselves from this embarrassment.

How Is Narcolepsy Treated?

Clearly, narcolepsy can have a significant impact on various aspects of a person’s life. Luckily, though, patients can minimize its effects by employing certain treatments, such as those outlined below:

Schedules

Sticking to a specific sleep and wakefulness schedule can be very beneficial to individuals with narcolepsy.

Taking naps at regular intervals throughout the day is helpful, too. Napping for about 20 minutes at a time appears to be most effective for many people with narcolepsy.

Regular Exercise

Exercising on a regular basis can help when it comes to managing narcolepsy. It can help people with this condition feel more alert throughout the day, and it may help them sleep better when nighttime rolls around.

Avoid Alcohol and Nicotine

Alcohol can make narcolepsy symptoms worse, so it’s best for people with this condition to avoid it as much as possible. They should also avoid nicotine, which may exacerbate symptoms and worsen sleep quality.

Medication

There are certain medications that can benefit those with narcolepsy as well. Some popular ones include the following:

Some people also use over-the-counter nootropic stimulants like adrafinil to help them stay awake during the day.

It’s always important to talk to your doctor and ask for a guide to adrafinil or any other medication before using it. This is especially true if you’re already taking medication for narcolepsy.

Start Managing Narcolepsy Today

Now that you know more about what living with narcolepsy is like, it’s time to start taking steps to manage it (or to help your loved one manage it). Keep this information in mind and you’ll likely find that this condition is easier to handle than you may have thought at first.

Do you want to learn more about managing narcolepsy or other health conditions? If so, check out some of the other health-related articles on our site today for additional information and insights.

 

Libby

Married for eons, mom of 10, Nonnie to 26 with a great grand coming soon, to add to the mix. Avid reader and photo taker, scrapbook queen and jewelry maker. Collector of dishes, planners and pens. Lover of animals, chocolate and spends…long hours soaking in the spa tub (with a fully charged tablet, diet soda, and grub). She’s worn lots of hats, tossed most to the wind, and doesn’t mind starting all over again. Every day is a new adventure…come along for the ride!

Libby has 4407 posts and counting. See all posts by Libby

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