A common concern in narcolepsy and idiopathic hypersomnia patients is a feeling of having little control over symptoms, which can lead to despair. But disorders of excessive sleepiness do have both medication and non-medication treatment approaches.
By Jose Colon, MD, MPH, ABLM, IFMCP
Narcolepsy and idiopathic hypersomnia (IH) are disorders of excessive daytime sleepiness (EDS) that can be impairing, if not disabling. Medical treatments are available to ameliorate the symptoms, but they don’t cure the underlying process. Patients commonly experience residual symptoms of sleepiness.
Sleep science research reports that less than 15% of patients with narcolepsy rely on medications alone, and up to 54% of these patients rely on nonpharmacological approaches and behavioral strategies.1 A groundbreaking patient survey developed by Wake Up Narcolepsy Inc revealed the amount of residual sleepiness and cognitive symptoms to be overwhelmingly high, to the point where an abstract about the results was titled, “Efficacy of current narcolepsy treatments: Are we setting the bar too low?”2
When treating my patients with narcolepsy and IH, I educate them about the physiology of their disorder as part of my standard approach. I inform them of both medical therapy and lifestyle choices they can employ. This is important not just because of residual EDS on medications, but because there are some patients who may not be best suited for pharmacotherapy such as expecting mothers and individuals who may have high susceptibility to side effects (which we are learning more about now with pharmacogenetic testing). It is important for sleep specialists to recognize and alert patients about what symptoms are out of their control—and what aspects patients can take control of.
Although this article is geared towards narcolepsy and idiopathic hypersomnia, it is pertinent to a broader scope of people. There are patients with sleep apnea who have residual EDS, as well as patients with neurological disorders, such as multiple sclerosis or Parkinson’s disease, which are associated with excessive daytime sleepiness. There can also be excessive daytime sleepiness with circadian shift work disorders, health care providers on call, and times when people may have less sleep such as an adult with an early meeting or athletes with a late game. I would dare to say some of these approaches may benefit just about anyone in the population from one time to another!
Narcolepsy is not just a disorder of sleepiness. It is a disorder of dysregulation of REM sleep and wake. I would like to take a moment to discuss what things a person with narcolepsy does have an influence on. To do this, we must first look at some basic science of narcolepsy.
What influences wake?
There are neurotransmitters that are wake-promoting. Examples include dopamine, norepinephrine, histamine, serotonin, and hypocretin/orexin. This explains why an “anti”histamine makes a person sleepy. Of all of these, serotonin is actually the least alerting. Most medications that influence wakefulness increase levels of norepinephrine and dopamine, and some novel approaches influence histamine.
Neurotransmitter hypocretin/orexin is also involved in the regulation of REM sleep. When spinal fluid measurements are done, patients with narcolepsy are shown to have less hypocretin/orexin. This helps explain why they have sleepiness. It also helps explain why patients with narcolepsy have intrusions of REM sleep into the daytime—creating the symptoms of cataplexy, vivid dream-like hallucinations, and sleep paralysis.
Less is known about idiopathic hypersomnia; however, studies done on spinal fluid have showed lower histamine levels. This may help explain why patients with IH have sleepiness but without some of the REM sleep-associated symptoms. Another hypothesis is that IH is a disorder of the nervous system in which there often appears to be an abnormal hypersensitivity to γ-aminobutyric acid (GABA), a principal player in the brain mechanisms that promote sleep.
Patients with narcolepsy and IH do not have control of the decrease of their affected wake/alertness-promoting neurotransmitters. But what do they have control of? There are several other factors that influence sleepiness and wakefulness.
Anything that gives energy also creates a waste product. Gasoline gives your car energy, and the waste product—exhaust—comes out the muffler. Our brain uses glucose for energy, and the waste product is adenosine, which creates the feeling of “exhaust.” In the first half of a person’s sleep, deep slow wave sleep washes away the adenosine/exhaust. Having inadequate sleep at night may result in feeling exhausted the next morning. Caffeine counteracts adenosine/exhaust in the brain, as it acts as an adenosine-receptor antagonist.
- Scheduling naps helps reduce some adenosine/exhaust build up.
- Consuming caffeine can help lower the effects of adenosine/exhaust.
- Setting regular bedtimes can allow for sufficient sleep.
Have you ever woken up at night because you had to use the bathroom? So being well hydrated is alerting! Have you ever felt fatigued after excessively sweating or on a go-go-go day when you didn’t have time to drink enough water? People commonly ask how much water to drink per day. My answer is to look at your urine. If it is yellow you are slightly dehydrated, and if it is clear you are well hydrated.
- Staying well hydrated.
- I commonly write a letter to a patient’s school, advising that the student be allowed to carry water with them, as well as permitted frequent bathroom breaks.
Comorbid Sleep Disorders
Insomnia complaints are present in more than half of patients with narcolepsy3 (making nighttime sleeplessness complaints more common than complaints of cataplexy). What’s more, patients with narcolepsy can also have sleep apnea. Large portions of the general population can have these disorders, as well as other disorders (such as restless legs syndrome).
- Evaluating narcolepsy patients for identification and treatment of other sleep disorders that may further contribute to sleepiness.
Many people get tired when they slouch. There is a reason teachers tell students to sit up straight. The spinal muscles send messages to stimulate nerves in the reticular activating system (wake/alertness promoting area of the brain).
- Taking moments to regularly sit up straight.
- Exercising your core muscles to promote good posture.
- Choosing comfortable chairs that promote good posture.
The glycemic index also plays a large role, as high sugar loads or high carbohydrate meals impair hypocretin/orexin neurons. In the scientific literature, very low carbohydrate diets have been linked to some improvements in symptoms.
Ghrelin is a hormone that gives a sensation of hunger, and it also equally causes alertness. In no way am I suggesting to self-induce hunger for alertness. But heavy meals have the opposite effect; they are sleep-inducing. Fat cells secrete leptin, which helps regulate feeding drive as well. Leptin is secreted in proportion to the amount of fat cells a person has. High levels of leptin have been associated with sleepiness.
- Avoiding high glycemic (sedating) meals.
- Exercising regularly decreases body fat, which reciprocally decreases leptin levels.
- I previously detailed nutrients that can affect sleep quality or fatigue, and the article is available online.4
I have observed that when people practice mindfulness and other types of meditation, they get sleepy. This has been universally observed to the point where techniques have been cultivated to be wake-promoting to help keep the practitioner from falling asleep.
Posture, discussed earlier, is one; another is visualizing white light—such techniques allow Buddhist monks to stay alert for very long durations of meditation. Also, mindfulness can be practiced to improve attention span and decrease anxieties. Finally, mindfulness also implores a basis of “nonjudgment,” a concept that has been effective for mindfulness-based training for insomnia and is in consideration for research for narcolepsy.
- Finding a studio or mentor that can help build meditation skills.
- Beginning with less sedating meditations such as a walking or loving-kindness meditation.
- Searching for meditation apps may be helpful as well.
Patients with narcolepsy have less hypocretin/orexin, which causes intrusions of REM sleep into the daytime, giving symptoms of cataplexy, vivid dream-like hallucinations, and sleep paralysis. These are commonly triggered by emotions. Antidepressants commonly suppress REM, which is why they can reduce these symptoms. Sodium oxybate is a medication that consolidates sleep at night; with better sleep consolidation, patients experience fewer daytime REM intrusion symptoms.
- Choosing whether to take REM suppressing medications.
- Avoiding medications that cause sleepiness in the daytime.
Emotions commonly bring symptoms of REM intrusion to a person with narcolepsy. It is NOT a simple “mind over matter.” It is biological and due to lower hypocretin/orexin levels. But everyone may benefit from emotional regulation. Emotions do influence our biology in many ways.
- Counseling on emotional regulation.
- Reading books on emotional intelligence. Many come in audiobooks that may be less sedating than reading.
- Finding a mentor in mindfulness may also be helpful.
When a person walks into a party with people smiling, they feel happy. When a person walks into a principal’s office and there’s a boy with the look of dread staring at the floor, they may feel anxious. We can’t control hypocretin/orexin levels, but we do have control of the company we keep.
Friends of mine with narcolepsy say they feel more upbeat when they are around motivated, energized people and likewise feel more drained when around negativity. There is a neurobiology to this as well, called mirror neurons. This is how a baby will stick its tongue out when you do. Through mirror neurons a smaller child may imitate the kicking that an older sibling does in a karate class and an older sibling with a well-formed vocabulary may engage in a younger sibling’s baby talk. In order words, Winnie the Pooh can choose to hang out with Tigger or with Eeyore and Smurfette can choose whether to date Handy or Grouchy.
- Disconnecting with people that infuse negativity, at least momentarily.
- Unfollowing people on social media who just flat out bring you down!
Stand in front of the mirror and smile for 10 seconds. Did that make you feel happy? Now do the opposite: stand in front of the mirror and frown. Does that give you a sensation in your gut that is not pleasant? There is a neurobiology to this as well. The nerves of our muscles of facial expression come from the brainstem. The brainstem also has connections to our limbic system, which is our emotional area. The brainstem actually has other nerves that communicate with the emotional limbic area that return to our bodies, including to the heart and gut.
In feelings of happiness, we are contracting muscles that raise the cheeks in combination, which pulls up the corners of the lips. This also sends input to our emotional area and our bodies, giving a “heartfelt” feeling. And when we frown we indeed feel sad. When inner parts of eyebrows shoot up, you may feel distress and anguish. Narrowing of the red margin of the lips is a reliable anger sign. This also communicates with nerves that go down to our bodies and give us a “gut feeling” that something is wrong. Once again, this is also where mirror neurons make us feel what others are feeling. The emotion of anguish can be exhausting!
- Taking the time to smile whenever you come across a mirror.
- Notice when you feel sad, then attempt to find something that brings you a happy thought and smile.
Dr. C Special Tip: Tell a child you like their smile! It will build confidence in their smile. When they are confident in their smile, they will smile more. When you smile more, you will feel better.
Have you ever had a bad night’s sleep but still got through the day? Have you ever had great sleep and still felt tired the next day? When you take a bandage off a child, do you instruct the child to stare at it or to look away and distract them?
People with narcolepsy and idiopathic hypersomnia can’t control that they have a disorder with objective sleepiness; once again it is not mind over matter. But if they monitor for signs of fatigue, they will eventually find the sensations of tense shoulders, heavy eyes, and mental fog.
- Regularly practicing mindfulness, yoga, or any other type of meditative practice.
Generally, medications that are wake/alertness promoting increase levels of dopamine and/or norepinephrine. These medications may last for different durations in different people.
- Choosing whether to take medications.
- Taking a long-acting medication if needed to get through the day.
- Taking a short-acting medication either as needed or when you feel a long-acting medication wearing off.
- Avoiding sedating medications is also advised.
A nap during the afternoon restores wakefulness and promotes performance and learning. Naps of less than a 30-minute duration confer several benefits, whereas longer naps are associated with a loss of productivity and sleep inertia.
- Scheduling naps during breaks at work.
- I commonly write a letter to a patient’s school to allow students with narcolepsy to nap in the nurse’s office for 20 minutes. It is better to plan a 20-minute nap than to be dysfunctionally tired for 2+ hours.
Nappuchino—Combining Naps and Caffeine
Knowing the benefits of caffeine and napping, you can combine the two! Since napping for less than 30 minutes has cognitive benefits and it takes about 20 minutes to absorb caffeine, a “nappuchino” allows for the benefits of both to be experienced at the same time. (And this has been studied in occupational medicine.)
I am NOT advocating caffeine overuse. It is my general experience that patients with hypersomnia have and will use caffeine for symptoms of excessive daytime sleepiness. The US Food and Drug Administration has approved formulations of caffeine with doses at 200 mg every 3 to 4 hours. It is important to note that caffeine content higher than 200 mg, in particular reaching 300 mg, may cause anxiety.
- Scheduling time for a nappuchino.
- Noting that caffeine after 2 pm and/or naps after 4 pm may negatively affect sleep at night.
Cardiopulmonary fitness in narcolepsy is inversely related to the degree of sleepiness and cataplexy episode frequency. Exercise has also been shown to increase brain-derived neurotrophic factor, which is like growth hormone for your brain. The power of exercising just 90 minutes per week can have a profound effect on mortality, and exercising 150 minutes per week improves sleep quality!
- Exercising as little as 90 minutes per week (three 30-minute sessions), if it increases the heart rate to where you can talk but not sing, builds the brain.
In no way am I suggesting that aromatherapy can rebuild hypocretin/orexin neurons or replace medications. But studies on aromatherapy, such as on peppermint oil, have reported improvements in memory and cognition. Citrus scents can be alerting as well.
If aromatherapy allows you to get through a test, or complete a task, this may improve quality of life with minimal (if any) side effects.
Other preparations, such as lavender and rosemary, may improve sleep and decrease stress hormones.
- Rubbing peppermint or citrus oil on your temples when feeling a lull.
- Considering a diffuser for home use.
L-Tyrosine is an amino acid that is used to produce norepinephrine and dopamine. These happen to be the same neurotransmitters most commonly targeted with wake-promoting medications. One study with narcolepsy patients did not show significant improvement in sleepiness, though it did imply benefits to cognitive function. Several other studies have shown there could be improvement in alertness following sleep deprivation, and others have shown it improving memory and reasoning in sleep-deprived patients.
- Eating foods containing tyrosine, which include chicken, turkey, fish, milk, yogurt, cottage cheese, cheese, peanuts, almonds, pumpkin seeds, sesame seeds, soy products, lima beans, and avocados.
- If considering L-Tyrosine supplementation, make sure the product is Good Manufacturing Practice-certified for consistent quality, and doctors should review dosage.
Jose Colon, MD, MPH, ABLM, IFMCP, is triple board certified in sleep medicine, child neurology, and lifestyle medicine. He is an award-winning author of books about sleep for women, infants, and children. He is the founder of ParadiseSleep.com, a resource to advocate for sleep and wellness. One of his personal mottos is: Encourage others to encourage others.
- Neikrug AB, Crawford MR, Ong JC. Behavioral sleep medicine services for hypersomnia disorders: a survey study. Behav Sleep Med. 2017 Mar-Apr;15(2):158-71.
- Maski KP, Steinhart E, Flygare J, et al. Efficacy of current narcolepsy treatments: Are we setting the bar too low? Sleep. 2014;37(suppl):A232.
- Roth T, Dauvilliers Y, Mignot E, et al. Disrupted nighttime sleep in narcolepsy. J Clin Sleep Med. 2013 Sep 15;9(9):955-65.
- Colon J. How does nutrition impact sleep disorders? Sleep Review. 27 Oct 2018. Available at https://sleepreviewmag.com/sleep-disorders/insomnia/nutrition-impact-sleep-disorders.