Narcolepsy

Neurological

Narcolepsy can be a debilitating condition. People with narcolepsy cannot control their “sleep-wake” cycles. They have trouble getting full REM (rapid-eye movement) sleep at night and can fall asleep during the day at any time no matter what they are doing. Sleepiness is very severe and causes “sleep attacks,” where you just fall asleep for seconds to minutes at a time.

Sufferers can fall asleep at work, during a ball game, and, most dangerously while driving. The condition affects 1 out of every 2,000 people and is one of the most misunderstood conditions in healthcare. With treatment, narcolepsy is manageable, and sufferers can lead normal healthy lives. This article will help you understand what narcolepsy is, how it is diagnosed and treated, and some lifestyle tips to help you manage to live with the disorder.

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Symptoms

The one main symptom of narcolepsy is sleepiness and sleeping in the daytime. This can be mild drowsiness to several sleep attacks a day. The attacks last for around 30 minutes but can be shorter. Many people have emotional triggers including joy happiness, fear, and anger. Major symptoms of narcolepsy include:

Sleep attacks. Falling asleep at random times and suddenly. It usually happens during quiet activities but can occur while driving or doing something dangerous.

Cataplexy. Complete loss of muscle tone, weakness, inability to talk, falling or dropping items.

Hallucinations. Dreaming during twilight sleep or dozing. People can taste, hear, smell during these episodes.

Sleep paralysis. This is a type of paralysis that sets in while you are awake. You cannot move or speak, yet you are fully awake. It only lasts a few seconds and goes away on its own.

Other symptoms of narcolepsy include:

  • Brain fog
  • Trouble remembering
  • Trouble focusing
  • No energy
  • Severe fatigue
  • Depressed feelings
  • Insomnia

Types

Narcolepsy can interfere with working, school, recreational activities, or eating. It can be very dangerous if a “sleep attack” hits while driving or using heavy machinery at work. The sufferer may also lose muscle tone while still awake and are unable to move. This is known as, cataplexy. You can also suffer from hallucinations while awake.

There are three types of narcolepsy:

Narcolepsy with cataplexy. This is when strong emotions trigger muscle weakness in cataplexy episodes, plus daytime sleepiness.

Narcolepsy without cataplexy. This is just daytime sleepiness without episodes of muscle weakness and symptoms are milder.

Secondary narcolepsy. This type is very rare and happens when there is a brain injury. The symptoms are more severe and people with this type tend to sleep more than 10 hours a day. There are also neurological symptoms.

Diagnosis

If you have symptoms of narcolepsy, see your doctor for a physical. This way the doctor can perform tests to rule out any other condition. You will need to give your medical history, medications you are taking, environmental exposures, and family medical history. It is a good idea to take in a “sleep log” letting the doctor know what time you go to bed, what time you wake up, and any symptoms you have over about two weeks.

To diagnose narcolepsy, the doctor may order the following:

Polysomnogram. For this test, you will stay overnight in a sleep center. You will be hooked up with electrodes to your head and placed on a heart and respiratory monitor. This will check the brain activity during sleep to check the NREM and REM cycles.

Multiple sleep latency tests(MSLT). This test shows someone’s ability to fall asleep during the day and levels of REM during sleeping during daytime hours. They are done during a few daytime naps 2 hours apart. Sleep latency usually lasts for 12 minutes and if the test falls below 8 minutes, you may have daytime sleepiness or narcolepsy. Other health issues can also cause lessened sleep latency during the day. The test will also check muscle nerve activity, heart rate, and respirations. Sleep apnea and medications can also cause this to happen so the doctor will have to carefully decide with this test and an overnight sleep study.

HLA typing. This blood test can look for viral infection or an autoimmune disorder that may cause narcolepsy. They can also check for defects in chromosome 6 that may point to narcolepsy.

Lumbar puncture. A lumbar puncture can be done to obtain a sample of cerebrospinal fluid. They can check for hypocretin levels in the fluid. If they are low, the diagnosis can be narcolepsy if the patient has no other condition that may cause low levels.

If you do not have episodes of cataplexy and an MSLT that was positive for latent periods of sleep that are 8 minutes or less, the doctor can diagnose narcolepsy based on symptoms alone. This is only if all other health screening tests are negative for other conditions that may cause daytime sleepiness.

Treatments

There is no known cure for narcolepsy at this time. With a good treatment plan, people who suffer from narcolepsy can live fairly normal lives. This includes:

  • Stimulant medications
  • Medications that mimic hypocretin – Promotes nighttime sleep and daytime wakefulness
  • Sleep medications for the night
  • Antidepressants – Can help reduce episodes of hallucinations, paralysis, and cataplexy
  • Healthy lifestyle changes and sleep “diet”
  • Light box therapy – Sitting in front of a UV lightbox for up to 30 minutes a day

Alternative Treatments and Home Remedies

Treatment for narcolepsy often involves taking medications to help balance hormones and maintain alertness. If you are considering alternative treatments that include taking supplements, talk to your doctor to make sure that the supplements do not interact with your current medications. Alternative treatments for narcolepsy include:

Cognitive-behavioral therapy (CBT). This form of therapy uses principles and learning techniques to change or improve sleeping behaviors. With the help of a therapist, you will design a treatment plan that helps you to structure your sleeping habits and help support lifestyle changes (i.e., diet) that will improve symptoms.

L-carnitine. This chemical is similar to an amino acid produced by the body and helps to turn fat into energy. It helps contribute to the function of the heart and brain and the movement of the muscles. L-carnitine has been shown to help patients with narcolepsy, improving symptoms of insomnia and positively affecting REM sleep patterns.

Other natural treatments for narcolepsy include:

  • Cayenne pepper
  • Gingko biloba
  • Gotu kola
  • B-complex vitamins
  • Rosemary tea
  • Guarana

Lifestyle Changes

Get up with NO SNOOZE BUTTON. Get up when your alarm goes off the first time. Do not hit your snooze button and make your bed as soon as you get up.

Take your medications, your shower, and get dressed. Don’t keep your pajamas on or delay your daytime medications. This tells your brain it is time to be awake.

Get plenty of light. Get plenty of sunlight or use a UV box during the day to make sure your brain knows it is time to be awake.

Get some cardiovascular exercise. Sometime in the morning, do a cardio workout. Never do cardio before bedtime, always do it early in the day.

DAYTIME

Avoid all caffeine. All day every day, no more caffeine. Make the switch to decaf and you will feel a difference.

Avoid sweets. Sugar may give you a little energy, but you will eventually crash and may even feel worse than before you ate it.

Avoid smoking. Tobacco can disturb your sleep/wake cycle and disrupt nighttime sleep and make you feel worse during the day.

Avoid alcohol. Alcohol disrupts sleeping patterns and can trigger an episode of narcolepsy. You will notice more daytime sleepiness after a few drinks the night before.

Avoid naps. Try to avoid naps during the day. You will notice fewer “sleep attacks” if you are more tired and sleep better at night. Try to do something stimulating or exercise when you feel like a nap.

Avoid driving if you feel unsafe. If you are having episodes that may lead to “sleep attacks” stay out of the car and off the roads.

BEDTIME

Plan for 7 to 8 hours sleep. Sleep anywhere in between 7 and 8 hours a night. This seems to be the magic number for the right amount of REM cycles to feel rested. Try not to sleep in on the weekends.

Keep your sleep area cool and quiet. Make sure your room is around 68 degrees. No TV in your bedroom, no cellphone, and keep the lights dim. This tells your brain that it is time to sleep.

Use a night alarm. Set your alarm clock for your usual bedtime. Once it goes off, get into your pajamas, turn down your bed and crawl in. If you have trouble falling asleep, give yourself an extra half hour for reading or quiet activities to feel sleepy.

References

Agudelo, H. A. M., et., al. (2014). Cognitive behavioral treatment for narcolepsy: can it complement pharmacotherapy? Sleep Science, 7, 30-42. Retrieved from University of Pennsylvania Medicine: https://www.med.upenn.edu/cbti/assets/user-content/documents/Behavioral%20treatments%20for%20narcolepsy.pdf

Akintomide, G. & Rickards, H. (2011, September 07). Narcolepsy: A review. Neuropsychiatric Disease and Treatment, 7(1), 507-518. Retrieved from ResearchGate: https://www.researchgate.net/publication/51652790_Narcolepsy_A_review

Division of Sleep Medicine at Harvard Medical School. (2013, July 19). Understanding Narcolepsy. Retrieved from Harvard Medical School: https://healthysleep.med.harvard.edu/narcolepsy/what-is-narcolepsy/understanding

Mayo Clinic Staff. (2012, October 24). Narcolepsy: Complications. Retrieved from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/narcolepsy/basics/complications/con-20027429

Miyagawa, T., et., al. (2013, January 17). Effects of oral L-carnitine administration in narcolepsy patients: A randomized, double-blind, cross-over, and placebo-controlled trial. PLoS One, 8(10), e53707. Retrieved from PMC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547955/

National Heart, Lung, and Blood Institute. (2010, November 1). What are the signs and symptoms of narcolepsy? Retrieved from National Heart, Lung, and Blood Institute: https://www.nhlbi.nih.gov/health/health-topics/topics/nar/signs

National Institute of Neurological Disorders and Stroke. (2015, January 5). Narcolepsy fact sheet. Retrieved from National Institutes of Health: https://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm#272573201

Renzoni, C. (2020, November 02). Is there a cure for narcolepsy? Retrieved from The Recovery Village: https://www.therecoveryvillage.com/mental-health/narcolepsy/faq/is-there-a-cure-for-narcolepsy/

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