Narcolepsy can be a debilitating condition. 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. It commonly hits around the teen years and is lifelong. With treatment, narcolepsy is very 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 living with the disorder.
People with narcolepsy cannot control their “sleep-wake” cycles. They have trouble getting full REM sleep at night and can fall asleep during the day at any time no matter what they are doing. The sleepiness is very severe and causes “sleep attacks,” where you just fall asleep for seconds to minutes at a time.
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.
You may notice that you don’t sleep well at night, but don’t sleep enough during the “sleep attacks” to feel rested either. In a normal sleep cycle, there is 8 hours of four to six cycles where you go through REM stages. This is when the body goes through NREM or non-rapid eye movement and then into REM or rapid eye movement. The body then goes into deep sleep with some short bursts of REM throughout the cycle. It is motor neurons in the brain that cause these sleep cycles to shift. These cycles normally last for about 100 to 110 minutes. The cycles always start with a period of NREM sleep that lasts around 80 minutes. With narcolepsy, the brain enters straight into REM sleep without the first phase.
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 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.
The disorder can affect both women and men and the onset is during teenage and early adulthood. It may appear later in life, but not usually seen before the age of 5 years old. There are many different causes, but people with narcolepsy tend to have lower level of hypocretin, a neurotransmitter that makes you feel awake.
Family History. Around 10 percent of sufferers have a family history of narcolepsy. It may also be caused by a genetic disorder that lowers the levels of hypocretin. Still, the disorder is not considered genetic because the cases of familial narcolepsy are so rare.
Autoimmune. One of the most common causes is the lack of cells in the brain that make the neurotransmitter, hypocretin. This may possibly be autoimmune where the body attacks these cells.
Environmental or Injury. Environmental exposure, hormones, poor diet, and infection may be a factor in developing narcolepsy or the autoimmune syndrome that causes the body to attack the cells that produce hypocretin. While it is rare, brain injury may disrupt proper REM sleep.
In some cases of narcolepsy, the cause cannot be explained.
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.
Other 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.
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 a two week time period.
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 Test – 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, the 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.
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:
Medications that mimic hypocretin. Ppromotes nighttime sleep and daytime wakefulness.
Sleep medications for 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 light box for up to 30 minutes a day.
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 Meds, 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 Cardio. Sometime in the morning, do a cardio workout. Never do cardio before bedtime, always do it early in the day.
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 really mess with your sleep/wake cycle and disrupt nighttime sleep and make you feel worse during the day.
Avoid Alcohol. Alcohol won’t mix with narcolepsy medications and doesn’t actually promote good sleep even though it makes you feel sleepy. 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 less “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.
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.
Narcolepsy can have complications that affect your work, your personal life, and possibly your safety. These include:
Poor Personal Relationships. You may have trouble getting along with others if you feel overtired during the day. Your intimate relationships may suffer because narcolepsy can lower sex drive. Cataplexy may also cause emotional numbness and make you feel disconnected from others.
Injuries. If you suffer from sleep attacks, you are at higher risk for injuries. Sleep attacks can come on suddenly and you may suffer; burns if a sleep attack happens while cooking, falls, car accidents, etc.
Weight Issues. Narcolepsy can lead to overeating and weight issues. People may overeat trying to get the needed energy to get through the day.
People with narcolepsy can expect a normal life span the same as anyone else. The only risk to lifespan are fatalities due to injuries sustained during sleep attacks, which are rare if good safety practices are in place.
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. (2012, October 24). Narcolepsy: Complications. Retrieved from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/narcolepsy/basics/complications/con-20027429
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 NIH: https://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm#272573201
Join our community to get support for your condition and help others by sharing your experience.