Sleep Tips
These are Doctor Stultz's sleep hygiene tips accumulated from her experiences with patients professional sources and published in her book Wake Up Sleepy Head!
Sleep Hygiene and Behavioral Treatments for Insomnia
We all hear about sleep hygiene and recommend it for various disorders associated with insomnia. Let me give you some of the more specific recommendations we use for sleep hygiene:
Three to four hours before bedtime, reduce fluids to prevent waking to go to the bathroom during sleep if that is an issue.
Avoid alcohol at least three to four hours or more before bedtime. Alcohol really can be disruptive to sleep and increase sleep apnea if present. While it may initially help some people get to sleep, it disrupts sleep quality, and tolerance can build, requiring higher amounts of alcohol to even help with sleep promotion. It can also increase bathroom trips.
Stop caffeine after 3:00 p.m.
Avoid nicotine before bedtime, and do not smoke if you wake up in the middle of the night. Nicotine is a stimulant and can delay sleep onset and cause disruptions during sleep. Smoking can decrease the quality of sleep as well as the quantity of sleep.
Avoid evening naps. A short catnap immediately after school or work may be okay. Do not take long naps (one to two hours) in the evenings.
If taking stimulants, avoid after 4:00 p.m. and use only short-acting stimulants in the afternoon or evening.
Exercise during the day is helpful, but not within three to four hours of sleep.
Do not eat heavy meals before bedtime. Eat dinner earlier and have a light snack before bedtime if needed.
Treat gastroesophageal reflux disease symptoms if present and use positional therapy to decrease the severity.
Start to dim the lights and lower the volume of TV shows or music one to two hours before sleep. Avoid bright lights in the evening and overstimulation.
Epsom salt soaks may be helpful to ease chronic pain, reduce stress, release muscle tension, and decrease restless legs symptoms. It should be avoided if pregnant, in those with significantly dry skin, and possibly with diabetes.
Schedule a sleep time that allows you to get seven to eight hours of sleep and start to prepare for bed at least an hour before your desired bedtime. This can be accomplished by taking a hot shower or bath, avoiding the news or action shows on the television, turning off electronics, listening to relaxing music, making a bedtime music playlist, doing some light stretching, not having emotionally stimulating conversations or paying bills late at night, considering using lavender or other essential oil, meditating, have sex or cuddle time with your partner, praying, exhaling, and practicing progressive relaxation or imagery visualization.
Progressive muscle relaxation involves slowing down your breathing, giving yourself permission to relax, then slowly tensing for 10 –15 seconds, then relaxing for about thirty seconds, all of your muscle groups starting with your toes and working your way up to your head. Then, imagine releasing all the worries, thoughts, and concerns trapped in your brain.
Guided imagery or imagery visualization involves using your mind and imagination to envision yourself more relaxed in an imagined scene or situation. While imagining this scene or situation, you allow your memory to visualize as many of the details of the location as you can, imagine the smells and sounds from the scene, any sense of touch you might feel in that situation, and even taste, if it is part of your visualization. There are websites and audio fi les with verbal directions you may listen to lead you through progressive muscle relaxation and guided imagery if you desire a more formalized approach.
Make sure your bedroom and your bed are comforting, relaxing, and free of chaos. Do not work in bed. Use a noise machine if there is environmental noise that would disrupt your sleep. Make sure the temperature is cool and not too hot or cold. Make sure your mattress and pillow are both comfortable and supportive. Ensure there is not too much outside light that would prevent sleep. Room darkening curtains, using cut-out cardboard or even aluminum foil applied to the inside of the window to block outside light may help to avoid disruption. Remove clutter from the bed. Do not sleep with your pets or kids, if possible; they are often a significant source of sleep disruption. If your bed partner snores, ask them to be evaluated. Alternatively, you may need to sleep in another room if their snoring is significant.
Keep your schedule consistent. Go to bed and get up at about the same time every day.
Go to bed only when sleepy and get back up if you are not asleep in twenty minutes. Do some non-stimulating activity (examples include looking at a magazine, folding laundry, watching a comedy or light-hearted show, listening to music, but do NOT get on electronics, watch the news, start a movie, or watch an action-packed show, drama, or cop show!). Return to bed when you are relaxed and sleepy.
Use your bed for sleep, naps, and sex only. Do not hang out in bed during the day or several hours before your desired sleep time. Your body and mind will not associate your bed with sleep.
My friend, distinguished colleague, and sleep doctor to many professional sporting teams, W. Chris Winter MD, has written a very readable, user-friendly book for insomnia, including a section on Narcolepsy and insomnia called The Sleep Solution. I suggest you consider reading this too! I often recommend his book to my patients.
Other Behavioral Treatments of Narcolepsy
(Marín Agudelo et al., 2014) (A. M. Morse, 2019)
Light therapy and sunlight can help. Get outside, get fresh air, get sunshine, and get moving!
Aromatherapy. Use rosemary to alert, as well as lemon, orange, grapefruit, clove, basil, cinnamon, and peppermint. Lavender is best to relax and aid with sleep.
Plan appointments and car trips based on your daily sleepiness symptoms.
Yoga can improve sleep by focusing breathing and attention on physical movements. Combining mindfulness, breathing regulation, stretching, and physical activity can lead to physical and mental relaxation and overall wellness.
Keep a regular sleep schedule. Avoid long sleep-ins, get up, get dressed, and make the bed.
Alarm clocks. Vibrating alarm clocks with gradual light therapy, two or three alarm clocks across the room, and a “sonic boom” alarm clock may be necessary. There is a wide variety of these available to purchase online. Sometimes, for patients having great trouble waking up in the morning, we advise them to set one alarm to wake about one hour before their required time to get up and take a short-acting stimulant. They can keep this medication beside their bed and only need to rise briefly to swallow it. The short-acting stimulant will then have time to get into the system, allowing patients to be more alert and have an easier time getting up, when necessary, when their second alarm goes off. Alternatively, a stimulant like Journay PM (methylphenidate HCL extended release) can be taken at night and may be helpful for sleepiness in the morning in those having ADHD and co-existing Narcolepsy.
Therapy/Counseling
Individual/family therapy, group therapy for Narcolepsy, and groups on the Internet are priceless. I cannot emphasize enough the power of supportive peer groups in treating Narcolepsy!
Cognitive behavioral therapy for insomnia, hypersomnia, cataplexy, depression, and anxiety are helpful interventions for Narcolepsy. Other options for insomnia include smartphone apps such as the “CBT-I Coach,” a forehead temperature cooling device, and mindfulness training with CBT-I (Rosenberg et al., 2021).
Imagery rehearsal therapy for nightmares can be beneficial, and this will be discussed in more detail later in this chapter.
Hypnosis has been reported to help with sleep paralysis and sleepiness.
Dietary Accommodations
Various dietary changes have been recommended to assist. Look for what influences or helps you the most.
Small, frequent meals with healthy snacks instead of large meals may be of benefit.
A ketogenic diet, restricting carbohydrates to 10–15 mg, a 1-gram protein diet, and the Atkins Diet have all been reported by some patients to be of benefit. Others have also suggested gluten-free diets as being helpful. High carbohydrate diets often make even people without Narcolepsy sleepy.
Look for food intolerances, including chocolate, alcohol, and turkey, as causes of increased sedation or other symptoms. Look for things that worsen your sleepiness, such as heavy meals, late meals, or sweets.
Look for something that worsens your anxiety, such as excessive caffeine or decongestants, and avoid those.
Caffeine and alcohol may also contribute to insomnia, contributing to the cycle of hypersomnia and insomnia seen with Narcolepsy.
Nutritional Supplements
Magnesium has been used for insomnia, nocturnal leg cramps, pain/stiff ness, and restless legs and is reported to improve sleep quality and duration. It should be avoided during pregnancy until discussed with the OB/GYN.
Melatonin has been used as a supplement for insomnia but can lead to vivid dreams. It has been suggested that melatonin can improve insomnia and hypersomnolence by altering sleep architecture and improving REM sleep abnormalities (Xie et al., 2017).
Lifestyle Changes
Try relaxation techniques. A grounding technique used for anxiety involves the “5, 4, 3, 2, 1” approach in which you take a few moments to search for five things you can see, four things you can touch, three things you can hear, two things you can smell, and one thing you can taste. (Keep gum, mints, or licorice with you.)
Breathing techniques that can help include putting a hand on your chest and one on your abdomen and noticing that you are breathing and moving your stomach more than your chest as you slow your breathing down. Then, try breathing in through your nose and out through your mouth. Practice inhaling for a count of five, holding your breath for a count of five, and then exhaling to a count of five. People use different numbers for this exercise, often with a longer exhale time. The point is to notice your breathing, breathe more from your abdomen, slow your breathing down, and exhale to relax.
Manage safety concerns. Avoid driving, climbing, swimming, cooking, or other dangerous activities when sleepy or having cataplexy.
Avoid hot environments that might make you sleepy. The cooler, the better.
Say no and don’t feel guilty. Those who love you will understand when you can’t go out. Know your limits. But remember, they have feelings, too, and you must recognize and validate their feelings as well! Sometimes, you may have to go sleepy or grab a 15-minute strategic nap before going.
Get “Rest and Relaxation,” not just sleep. Work on self-care. Schedule downtime and time just hanging out with your family and friends. It cannot all be about your Narcolepsy, naps, and sleep. Life is short. Enjoy! Have fun! Start a hobby, craft, write, take pictures, play music, take walks, go hiking, enjoy nature, celebrate the sun, marvel at the moon and the stars, call an old friend, daydream, plan a date with your partner, and celebrate life! You are not your Narcolepsy! You are a person with Narcolepsy and deserve fun and to live life to the fullest!
Avoid triggers at specific c times but don’t try to avoid all emotions all the time! For example, if laughter is one of the precipitants of cataplexy, advise your friends and family members not to tell jokes while you are walking down the stairs, driving, or during other activities that may be dangerous for you. But don’t stop laughing and having fun when sitting or in a safe environment.
Alert others. I suggest patients wear an identification badge or bracelet that can be worn to alert others if you have an episode of cataplexy or are found asleep. Have a way to warn others of what is happening and what they should or should not do. Bracelets can be ordered online, or we have created a medical badge you can order at the back of the book. Patients with Narcolepsy who drive also need signs to put in their car windows if they have a habit of napping in the car at lunchtime, before going home from work, or if they have to pull over on a driving trip. Nowadays, anyone seen sleeping in their vehicle is assumed to be a drug-related incident or overdose, and much excitement may be initiated to alert someone of this possibility and bring on the Narcan! We also have an offer for one of these windshield/school/workplace cards in the back of the book and will discuss this more below under driving with Narcolepsy.
School and work modifications are discussed more in Chapter 11. (of Wake Up Sleepy Head!)
Other Options
Meditation. There are many options for practicing meditation these days. YouTube videos, DVDs, audio recordings, apps, yoga classes, and therapy sessions are just a few options. I recently recorded an audio topic on Obstructive Sleep Apnea for the 5 Minutes For Me app, with hopes to do a brief one on Narcolepsy in the future. The 5 Minutes For Me app has meditations of five, ten, and twenty minutes, along with audio recordings on various topics such as wellness, mindset, resilience, self-help, and productivity. There are multiple resources for meditation on the internet.
Practice gratitude and mindfulness. Be grateful for the things you can do. Keep a gratitude journal. Focus on your abilities, not your disabilities, with Narcolepsy.
Create a playlist, one to get you moving when sleepy and one to help you wind down and relax during the evening. You may also want to create one for when you feel discouraged, which may be more motivating and uplifting. Also consider one for when you are driving, which would be energizing and alerting.
