Narcolepsy – What is it?

Narcolepsy is a sleep disorder recognizable by its sudden and extreme sleep attacks—moments of sleepiness that are so strong you can’t fight off the urge to sleep—accompanied by reoccurring periods of overwhelming daytime drowsiness throughout the day. When you have narcolepsy, you will find it very difficult to stay awake for long periods of time.  Narcolepsy is both a chronic condition and an incurable sleep disorder.

Cataplexy is a condition that may come with narcolepsy. It is recognized as the loss of muscle tone and leads to weakness and sudden loss of muscle control. Cataplexy is uncontrollable once triggered. This weakness and loss of muscle control range from slurred speech to a sudden drop of your head or your knees buckling. These actions are brought on by extreme emotion, usually laughter, but can be a result of fear, surprise, or anger. How often these episodes occur is different from person to person, for some, episodes only happen once or twice a year, and for others, they occur daily. These episodes may only last for a few seconds, but they can last for up to a few minutes. However, not everyone who has narcolepsy will have cataplexy.

Clearly narcolepsy can cause serious disruptions during your day and can become very dangerous for you and others. No matter the circumstance, whether participating in a stimulating activity or watching TV, someone with narcolepsy can suddenly fall asleep.  People can experience these extreme sleep attacks and fall asleep mid-conversation, while cooking, or while driving a car. They may continue to act out whatever it is they are doing after they have fallen asleep, in a semi-automatic manner. For example, they may be preparing a meal and suddenly fall asleep, except they will continue to prepare the meal in this semi-automatic way, but they will be doing a very poor job and could easily injure themselves or others; self-inflicted cuts and burns are common for people with narcolepsy.

What causes it?

There could be many causes of narcolepsy, but as of right now any specific causes are unknown. However, there are some links to narcolepsy that have been made. Hypocretin is a chemical in your brain that regulates when you are awake and when you are asleep, specifically REM sleep. Studies have found that most individuals who suffer from narcolepsy also have low levels of hypocretin.

In certain cases, family history of narcolepsy and genetics have played a role in the development of narcolepsy.

Research has also shown a possible connection between the development of narcolepsy and exposure to the H1N1 virus, commonly known as swine flu. However, it is undetermined whether exposure to the virus may increase your chances of getting narcolepsy or if in some cases the virus may directly cause narcolepsy.

Possible solutions

There is no cure for narcolepsy, but medications and lifestyle modifications can help you manage the symptoms.

Medications

Medications for narcolepsy include:

Stimulants
Stimulants are the main treatment for people with narcolepsy. They are used to help you stay awake during the day and combat the extreme drowsiness and sleep attacks of narcolepsy. Doctors like to prescribe modafinil or armodafinil, new stimulants that aren’t as addictive and don’t produce extreme highs and lows as older stimulants do. Modafinil typically doesn’t produce side effects but may cause headaches, nausea, or dry mouth.

Methylphenidate or different amphetamines might be needed as well. They are very effective, but doctors try to avoid them because they can be addictive and may have adverse side effects like nervousness and heart palpitations.

Selective serotonin reuptake inhibitors (SSRIs) or serotonin and norepinephrine reuptake inhibitors (SNRIs)
These medications help control REM sleep, restraining it during the day. They are usually prescribed to help suppress symptoms of cataplexy, hallucinations as one falls asleep and as one wakes, and sleep paralysis. These medications include fluoxetine and venlafaxine. Side effects may include digestive issues, sexual dysfunction, and weight gain.

Tricyclic antidepressants
These are older antidepressants and have been very effective for treating cataplexy, but common side effects include dry mouth and lightheadedness. These side effects have frequently been observed and can become an issue. Commonly used Tricyclic antidepressants are protriptyline, imipramine, and clomipramine.

Sodium oxybate (Xyrem)
Sodium oxybate is very effective in treating cataplexy and helps improve nighttime sleep, which is a common issue for people with narcolepsy. When taken in high doses, sodium oxybate is known to help control some daytime sleepiness too.

Side effects may include, nausea, bed-wetting, and worsening sleepwalking. Although sodium oxybate is effective, when taken with other sleeping medications, narcotic painkillers, or alcohol it can lead to difficulty breathing, coma, and even death.

Other treatments for narcolepsy that are in the testing stages of development include hypocretin replacement, hypocretin gene therapy, and immunotherapy. Further research is needed before these drugs can come available, but testing is being done to help ensure a quality life for someone with narcolepsy.

Lifestyle

In addition to medication, certain lifestyle modifications may help reduce the negative effects of narcolepsy. Most people who have narcolepsy have a difficult time sleeping at night. They report experiencing disrupted sleep, which contributes to their daytime sleepiness. If you have narcolepsy, these tips can help you get a more restful and undisturbed nighttime sleep:

  • Regulate sleep and wake times. Try to stay consistent with nightly bedtimes and morning wake up times every day, including weekends.
  • Exercise. Staying active is great for your overall health and also promotes a good night’s sleep with no interruptions. However, be sure to avoid exercising within 3-4 hours of your bedtime. Otherwise, the stimulation from exercise can keep you from falling asleep.
  • Skip the nightcap. Even though it may make you drowsy, alcohol disrupts sleep leaving you tired and groggy throughout the day. Also, avoid caffeine and nicotine late at night as they are both stimulants and will make it difficult to fall asleep and to stay asleep.
  • Get comfy.  Sleep on a comfortable mattress and make sure your bedroom is comfortable for sleep. Keep the temperature cool, but not cold, keep the room dark, and consider running a fan or white noise machine to help induce sleep.
  • Wind down. Create a relaxing bedtime ritual free from electronics. Bedtime rituals are something you consistently do before going to bed for the night. This can include taking a warm, relaxing bath, reading a good book, or listening to soft, relaxing music.
  • Reserve the bedroom for sleep and keep it that way. Avoid reading, using electronics, or participating in activities other than sleep and sex in your bedroom. Keep it consistent, so when you go to your room, your body knows it’s time to sleep.

Why get treatment?

While Narcolepsy is a chronic condition with no cure, there are medications that help many people get through the day and live as close to normal lives as possible. Proper medication also with key lifestyle changes makes living with narcolepsy very manageable and the possibility of living a quality life attainable.

Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. This article is for informational purposes only and does not constitute medical advice; the Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.