Deep, uninterrupted slumber is important for everyone, but it's especially critical for people with neurologic disorders. Sleep deprivation can make symptoms such as pain, stiffness, memory loss, fatigue, and confusion worse and can provoke seizures and headaches. Here's the rub, though: the very disorders that make sleep such a valued commodity are often responsible for robbing you of the rest you need.
“A lot of sleep mechanisms are based in the brain,” explains Jennifer Molano, MD, FAAN, associate professor of neurology at the University of Cincinnati. Neurotransmitters such as serotonin and norepinephrine control whether you're awake or asleep by signaling different neurons in the brain to turn on and off. The “body clock” that controls wake-sleep cycles is located in the hypothalamus. When light passes through the optic nerve and reaches the hypothalamus, it leads to pathways that decrease the production of melatonin, a hormone that signals your body to sleep. “When you have a neurologic condition, those mechanisms may not work as well,” Dr. Molano explains.
These dysfunctional mechanisms—along with the natural effects of aging—can keep you up at night or make you drowsy during the day. They may also cause you to sleep fitfully, waking up several times during the night, preventing you from getting the deep, restorative rapid eye movement sleep you need. In some cases, you may also experience vivid dreams, nightmares, leg spasms, or other physical and psychological effects that keep you from settling down.
“We're still trying to figure out the function of sleep, but we know that we can't survive without it,” says Dr. Molano. “We do understand that it helps systems stay in balance, and it rejuvenates us for the next day.”
The most relevant and important research reveals that during sleep the brain clears out toxins such as amyloids, the sticky plaque proteins associated with Alzheimer's disease. “Most of the research has been in Alzheimer's disease, but I think over time we'll find that other neurologic conditions are affected by poor sleep and clearance of toxins,” says Beth Malow, MD, FAAN, a professor of neurology at Vanderbilt University in Nashville.
MAKE SLEEP A PRIORITY
The first step to getting a better night's rest is to consider sleep a crucial part of your regimen, as important as what you eat, how often you exercise, and even what medications you take. “Sleep is integral to our health, and in fact, many doctors are now looking at sleep as the fifth vital sign [in addition to heart rate, temperature, blood pressure, and breathing rate],” says Andrew Westwood, MD, assistant professor of neurology at Columbia University College of Physicians and Surgeons in New York City.
RULE OUT OTHER CONDITIONS
If you're dogged by insomnia or insufficient sleep, talk to your neurologist or a sleep specialist to rule out any underlying primary sleep disorders, such as obstructive sleep apnea (when you stop breathing several times during the night because of an obstruction of airways) or restless legs syndrome (an irresistible desire to move your legs or walk around at night), says Dr. Westwood. Both conditions are common, especially in those with neurologic conditions such as Parkinson's disease, and they can be treated successfully with devices such as a continuous positive airway pressure machine for sleep apnea or medications for restless legs syndrome.
For other obstacles to sleep, such as medication side effects and nighttime stiffness, follow these expert-approved strategies for getting back into the sleep zone.
Even over-the-counter cold medications and allergy pills can cause fatigue during the day or send your heart racing in the middle of the night. Drugs used to treat neurologic disorders can also affect sleep patterns. Medications such as anticonvulsants for seizure disorders, cholinesterase inhibitors for dementia, or levodopa for Parkinson's disease can cause sleepiness during the day, sleeplessness at night, or restless interrupted sleep.
Some people also take medications for high cholesterol or hypertension, including alpha- or beta-blockers and angiotensin-converting-enzyme inhibitors, which are known to cause insomnia or daytime sleepiness. And there is yet a third complication: “Many neurologic conditions are associated with a higher rate of depression, so many patients also take antidepressants, which can adversely affect quality of sleep,” says Michael Thorpy, MD, director of the Montefiore Medical Center Sleep-Wake Disorders Center in the Bronx, NY.
Many people with neurologic conditions could be taking four, five, or even more different pills during the day, which can interact in various ways to affect sleep. Additionally, people may even be more sensitive to the side effects of those pills because of a neurologic condition, says Dr. Malow.
1. Time your doses. Always check in with your doctor not only about the combination of medications you're taking (don't forget to mention any over-the-counter cold medicines or supplements), but also the timing of your doses, says Dr. Westwood. “You may be taking a pill right before bedtime that causes drowsiness for eight hours, but then you get up after six hours and still feel groggy during the day.” Moving some pills from morning to night, or vice versa, or even shifting them an hour or two in either direction may help you feel sleepy at exactly the right time.
2. Consider other drugs. If one particular drug seems to be causing your sleep troubles, talk to your physician about switching to another one, since drugs affect people differently. Also, if you have been on a specific drug for several months or years, be sure to discuss with your provider whether it's still relevant and if the benefits outweigh the risks, including sleep disturbance, suggests Dr. Westwood.
3. Make medications work for you. The sleep-related side effects of some medications can be used to your advantage. Some medications for migraines, for example, cause sleepiness, so if you have migraines and your doctor knows you have trouble sleeping, he or she might choose the medication that can do double-duty, says Dr. Westwood.
OBSTACLE: Distracting Environments
If you live in a nursing home or assisted living facility or have extended hospital stays, your surroundings may be disrupting your sleep. In order for our body clocks to work properly, we need constant environmental clues to tell us when it's morning and when it's night, and those clues often get blurred in an institution that provides 24-hour care.
One of the biggest problems is the lack of natural light, says Dr. Thorpy. “Being outdoors has a powerful effect on synchronizing your body clock,” he explains. “It's crucial to get good natural light.” Indoor light doesn't serve the same purpose, he says, explaining that direct sunlight can measure at a brightness of 12,000 lux, while indoor light is often 200 lux or less. In fact, a 2009 study in the Journal of Sleep Research found that residents of nursing homes were exposed to only about 10 minutes of light over 1,000 lux per day (people with dementia were exposed to only about one minute a day, if at all). At night, hospitals and nursing homes frequently leave the lights dimmed, but not fully out, notes Dr. Thorpy, denying patients and residents the complete darkness they need to cue their body to sleep.
In a facility, there may also be constant activity—patients being woken up for medicines in the middle of the night, hospital staff wheeling carts down the hall—and constant noise, such as the humming of monitors and machines. This can throw off sleep cycles even during a temporary stay at a hospital, and once the internal clock is out of sync, it can be difficult to get it back. Fragmented sleep is bad for your health and your mood. A 2015 study in Sleep found that people who were awakened several times at night experienced much worse moods the next day than those who had a delayed bedtime but were then allowed to progress uninterrupted through the different stages of sleep.
Furthermore, people in institutions tend to be more sedentary, which also affects the ability to fall asleep, says Dr. Thorpy.
1. Regulate your light. Whenever possible, open the blinds in your room during the day or sit in a visitor's area near windows with direct sunlight. Try to get outside for a few minutes a day, even if you're in a wheelchair and are just being wheeled around the parking lot for some healthy sunshine. If you can't achieve total darkness in your room at night, use an eyeshade to block out any light. If your sleep cycle is out of sync, talk to your physician about light box therapy. The therapy entails sitting near a box that emits anywhere from 2,500 lux to 10,000 lux of light in the morning to help reset the internal clock. A 2009 study in the Journal of the American Geriatric Society showed some improvement in circadian rhythms using light box therapy with people in nursing homes.
2. Control the noise. If ambient noise is disruptive, invest in a white noise machine to drown out other sounds, suggests Dr. Westwood. Or purchase good quality earplugs such as the silicon-based ones that swimmers use.
3. Increase your activity. Even if walking isn't possible, find out if you can participate in a seated exercise class. If you're in a facility that has a pool, ask about water exercise. If you're in a hospital, see if you can take regular walks around the hallways.
OBSTACLE: Circadian Clock Changes
As you age, your circadian rhythm undergoes natural changes—this is why a teenage grandchild may sleep easily until noon, while your eyes pop open at 5:30 am. But for people with neurologic conditions such as Alzheimer's disease, the internal clock can become completely unplugged. “The circadian rhythm is controlled by a pair of small structures in the brain called the suprachiasmatic nucleus, which is in the hypothalamus,” explains Dr. Molano. “In studies of people with Alzheimer's disease, we can see disease-related changes in that part of the brain, which can be associated with an irregular sleep-wake cycle.” In fact, there is evidence that sleep disturbance goes both ways: amyloid plaques, hallmarks of Alzheimer's disease, affect the brain, altering sleep cycles; and lack of sleep promotes the creation and spread of the plaques.
This disruption in the sleep center of the brain can cause patients to confuse night for day, wake up several times, or just wake up once in the night—but then get dressed and try to leave the house. In fact, according to the National Sleep Foundation, people in later stages of Alzheimer's disease rarely sleep for long periods of time. Instead, they doze on and off throughout the day and night.
1. Reset the inner clock. Maintain a consistent and active schedule during the day, and follow healthy sleep habits (see “8 Top Sleep Habits”). “Keeping a consistent waking time is even more important than a consistent bedtime for setting the internal clock,” says Susan McCurry, PhD, a research professor and sleep expert at the University of Washington in Seattle. Using light box therapy in the late afternoon or early evening may also push the bedtime later for a person with Alzheimer's disease who has been going to sleep and waking very early, says Helene A. Emsellem, MD, director of the Center for Sleep & Wake Disorders in Chevy Chase, MD.
2. Talk to your doctor about sleeping pills. In cases where a sleep disturbance affects the whole household, a physician may prescribe a trial of tricyclic antidepressants, benzodiazepines, antipsychotics, or sleeping pills. Sleeping pills should be prescribed cautiously, though, warns Dr. Emsellem. Patients with neurologic disease may be more sensitive to the effects of sleeping pills and may require lower doses, she explains. And some patients may not tolerate them at all. Also, for people who have trouble sleeping for a long period of time, sleeping pills can lead to more grogginess and impaired judgment the following day.
OBSTACLE: Nighttime stiffness and pain
For conditions such as Parkinson's disease, muscular dystrophy, and multiple sclerosis, pain and stiffness can make it impossible to get comfortable enough to fall asleep—and when you do, you may wake up when you feel a cramp, pang of pain, or a sudden movement. “Being able to change position is an important part of getting quality sleep,” says Dr. Thorpy. “Plus, pain is often worse at night, because there are fewer environmental stimuli coming in to distract from your pain.” Sleep deprivation then sets in motion a vicious cycle, he explains: If you don't get enough sleep, your tolerance for pain goes down, so more pain equals less sleep equals more pain.
A 2015 survey by the National Sleep Foundation found that one in four people who had chronic pain reported very poor sleep quality. People in pain also reported the biggest sleep deficit—that is, the difference between the amount of sleep they say they need and the amount they actually get. While people without pain reported no sleep deficit, those with chronic pain lost an average of 42 minutes per night. For 39 percent of people with chronic pain, the anxiety about how sleep deprivation was affecting their health was another reason they lay awake at night. People in pain were disturbed by environmental factors such as noise, light, and temperature at a higher rate than people who did not report or experience pain.
1. Treat the pain. “With conditions such as Parkinson's disease, we're often so focused on maximizing motor performance during the day that we don't think about how the need for those medications is affecting the patient at night,” says Dr. Emsellem. “It's important for the patient to tell the doctor if he or she is feeling restless at night. Often an extra dose of medication for pain or Parkinson's at bedtime can be very helpful.”
2. Talk to others. Join online support groups for people with your condition, and share tips, suggests Dr. Molano. “Many people have found creative ways to deal with pain during sleeping,” she says. “For example, when my father-in-law was diagnosed with Parkinson's disease, someone suggested he wear silk pajamas, which make it easier to move around in bed. He found that very helpful.”
3. Make your bed comfortable. Buy an inexpensive mattress topper to make the bed softer and more comfortable, especially if you've lost a lot of weight because of your condition, says Dr. Emsellem. Fitted satin sheets and/or bed rails can make it easier to move around in bed.
4. Prime your muscles. Take a warm bath before bed to relax muscles and keep them from cramping during sleep.
Neurologic illness and depression often go hand in hand: As many as 40 to 45 percent of people with Parkinson's disease or multiple sclerosis experience depression, and up to 34 percent of people recovering from stroke report depression in the first two years, according to a 2005 study in the Journal of Neurology, Neurosurgery and Psychiatry. People who are depressed often have difficulty falling asleep or staying asleep, or they experience unrefreshing sleep or daytime sleepiness. It's also very common for people with depression to wake up early and then be unable to get back to sleep, according to the National Institute of Neurological Disorders and Stroke. “It's not just that you're waking up worrying about things,” Dr. Malow explains. “It's biological—when you're depressed, your brain is wired to wake up early.”
And of course, feeling exhausted all the time can add to your sense of hopelessness and helplessness. (According to the Sleep Foundation, people with insomnia have 10 times the risk of depression.) All these factors feed off each other: Your disease causes sleep problems, the lack of sleep then increases your risk of depression; then it turns back on itself, with the depression keeping you awake, worsening your symptoms.
Furthermore, many antidepressants such as selective serotonin reuptake inhibitors (SSRIs) are stimulating and can interfere with sleep.
1. Monitor your medications. Antidepressants can be very effective. A 2011 review in the Journal of Neurology, Neurosurgery and Psychiatry found that in patients with post-stroke depression, Parkinson's disease, multiple sclerosis, brain injury, and epilepsy, antidepressants led to remission of depression symptoms at twice the rate of those using a placebo. But many antidepressants, such as SSRIs, can affect not only the quality of sleep but may also exacerbate symptoms of restless legs syndrome, says Dr. Thorpy. Tricyclic antidepressants, which tend to be more sedating, may be preferable for those with sleep problems, says Dr. Malow.
2. Complement with nondrug therapies. In addition to working carefully with your doctor to find the best drug, and the right dosage and timing of that drug, to lift your mood without disturbing sleep, consider joining an online or in-person support group or talking to a cognitive behavioral therapist who specializes in treating people with chronic illness.
OBSTACLE: Daytime Sleepiness
Some neurologic conditions, such as Parkinson's disease, can trigger sleepiness during the day. A 2003 study in Movement Disorders found excessive daytime sleepiness in 76 percent of Parkinson's patients. Nodding off during the day can wreak havoc on your ability to sleep well at night. “Sleeping during the day weakens the signal for you to fall asleep at night,” says Dr. Molano.
But don't confuse fatigue with sleep, cautions Dr. Westwood. “Fatigue is when you feel physically or mentally exhausted, like you just can't do anything anymore, but you're not falling asleep during the day,” he explains. Daytime sleepiness, however, is when you nod off every time you sit in the passenger seat of a car or in front of the television. While fatigue is a side effect of many neurologic diseases and may get in the way of daily life, it is not necessarily a sleep-related problem, he says.
1. Build up your sleep drive. Stay as active as possible in the afternoon, says Dr. Malow. Don't take naps later than 1 or 2 pm and limit them to a half hour if possible.
2. Adjust your medications. If you take anti-Parkinson's medication, talk to your doctor about taking a dose at bedtime to help you sleep; you may also want to discuss taking a medication such as modafinil, which promotes wakefulness, or a long- or short-acting traditional stimulant during the day to help alleviate sleepiness, says Dr. Emsellem.
Try these expert-approved strategies to help prime your body for sleep.
1. Stick to a regular bedtime routine. The hour before you go to bed should be spent the same way every night. A routine creates positive conditioning, preparing your body for sleep.
2. Get up at the same time every morning. This helps keep your internal clock running correctly.
3. Avoid caffeine and alcohol. “A nightcap might help you fall asleep, but alcohol is associated with multiple awakenings later in the night,” says Jennifer Molano, MD, FAAN, associate professor of neurology at the University of Cincinnati. If you must have a cup of coffee or hot chocolate, be sure you finish it at least six hours before you go to bed.
4. Get daily exercise. Even a brief walk in the morning can help calibrate your body clock and help you sleep better at night.
5. Make the bedroom dark and quiet. Install shades that keep out any light, and use a white noise machine if there is excessive noise from cars.
6. Put disruptive pets out of the bedroom. Dogs and cats snore, shed, and move around during the night, so assess whether it's worth letting your animal in the bed.
7. Keep the temperature cool. The ideal room temperature for falling asleep is between 60 and 67 degrees Fahrenheit, according to the National Sleep Foundation. Your body temperature naturally drops in order to initiate sleep, and keeping the room cool can help move this process along.
8. Avoid electronics before bed. Answering emails or playing video games gets your brain buzzing. And research from Rensselaer Polytechnic Institute shows that exposure to light from computer tablets significantly lowers your levels of the hormone melatonin, which, along with light, regulates circadian rhythm. If you prefer to read on a tablet before bed, use orange-filter sunglasses to filter out the disruptive blue light, says Helene A. Emsellem, MD, director of the Center for Sleep & Wake Disorders in Chevy Chase, MD.
Say Good Night to Insomnia
Heed this advice to nip sleeplessness in the bud.
Insomnia is often triggered when a single stressful event disrupts your sleep. As you try to make up for lost sleep, you can get into an unhealthy cycle where you start to establish bad habits, says Michael Thorpy, MD, director of the Montefiore Medical Center Sleep-Wake Disorders Center in the Bronx, NY. “You have to recondition yourself quickly, because the longer insomnia goes on, the more difficult it is to reverse.”
A 2010 review in the Journal of Clinical Psychology found that pharmaceuticals are helpful for acute insomnia, but psychological treatments are more effective over the long term for both primary insomnia and insomnia that is secondary to other disorders, improving sleep up to 80 percent of the time. These tips can help.
1. USE THE BED ONLY FOR SLEEP. No matter how exhausted you are, stay in your bed only for the number of hours you plan to sleep. Don't lounge in bed all morning hoping to catch up on sleep, or stare at the ceiling when you can't sleep, advises Dr. Thorpy. When you spend time in the bedroom not sleeping, your brain associates the space with worry and wakefulness. The process of conditioning yourself to use the bed only for sleep is called “stimulus control therapy,” and in the Journal of Clinical Psychology report it was found to be the single most effective strategy. “If you can't fall asleep after 20 minutes, get out of bed and do a quiet activity like reading in another room before coming back to bed,” suggests Jennifer Molano, MD, FAAN, associate professor of neurology at the University of Cincinnati.
2. COCOON YOURSELF WITH MUSIC.To keep your brain from cycling through anxious thoughts as you try to sleep, download your favorite soothing music—Gregorian chants, classical music, or nature sounds—onto an MP3 player or your smartphone, says Helene A. Emsellem, MD, director of the Center for Sleep & Wake Disorders in Chevy Chase, MD. If you wake up at 2:30 am, for example, lie on your side, plug in one ear bud, and let the sounds lull you back to sleep.
3. GET TENSE, THEN RELAX. The second most successful treatment, according to the study, is progressive muscle relaxation. This exercise involves squeezing different muscles for four to seven seconds each, then relaxing for 20 to 45 seconds. Start with hands, then work your way through arms, shoulders, neck, face, jaw, abdomen, thighs, buttocks, feet, and ankles, focusing on the feelings of tension and relaxation.
4. TRY COGNITIVE BEHAVIORAL THERAPY. This type of therapy aims to change the way you think about sleep, replacing thoughts like, “I'll never sleep again!” and “If I don't get eight hours, I'll get sick” with more valid and helpful thoughts, explains Dr. Emsellem. “There is very good evidence that cognitive behavioral therapy [CBT] is not only as effective as sleep medications, but its positive effects last much longer.” Look for a therapist specifically trained in CBT for insomnia, but if you can't find one near you, there are several helpful online programs. Dr. Emsellem recommends the SHUTi program at shuti.me.
5. EXERCISE DAILY. A 2010 study in the Journal of Clinical Sleep Medicine found that people with insomnia who did moderate-intensity exercises (running on a treadmill) had reduced levels of anxiety, possibly because of the distraction and increased levels of serotonin, a neurotransmitter associated with well-being, and achieved approximately one hour of added sleep time. They also took less time to fall asleep.
6. USE PILLS JUDICIOUSLY. Because sleeping pills can cause daytime drowsiness, confusion, and a greater risk of falls—especially in older and cognitively impaired people—they should be used with caution, and only for a brief period of time. “CBT can take several weeks to work, so I often tag on a short-acting sleeping pills in the beginning so patients can fall asleep and get positive reinforcement while they are doing the therapy,” says Dr. Emsellem. Once the therapy is working, usually within a month, talk to your doctor about weaning off the sleep medication.
Caregivers Need Sleep Too
Sleep-deprived? These tip will keep you on top of your game.
About two-thirds of older adult caregivers experience sleep disturbances, according to Susan McCurry, PhD, a professor at the University of Washington in Seattle who has published several studies on the topic, including a 2007 overview in Sleep Medicine Reviews. The reasons are complex, she says. First, there's the obvious problem that if the person they are caring for is up several times during the night, they will be waking with them. “But even if the person you are caring for sleeps relatively well, you might lie awake at night worrying about tomorrow or feeling anxious about the long-term consequences of the person's condition.” And many family caregivers are older themselves, so they may already be dealing with the sleep problems that come with age, notes Dr. McCurry.
“If you're not getting enough sleep, it increases the burden of care,” says Dr. McCurry. “You have a greater risk of depression and of health problems like cardiovascular disease.” Plus, she adds, when you haven't slept, it's natural to become more irritable and less flexible or positive in challenging caregiver situations.
Here are solutions to common caregiver scenarios.
If the person you're caring for gets up at night…
In addition to instituting good sleep habits, consider hiring someone at night (some insurance plans may cover it). Look into adult day programs, which provide structured activities during the day, to keep your family member up and busy so he or she might sleep better at night. These programs also give you much needed time alone. “Some communities are even starting to have nighttime programs for people who have switched night for day,” says Dr. McCurry.
If you're up at night worrying…
Yoga, meditation, and talk therapy can all be helpful for worried caregivers, says Dr. McCurry, although finding time to pursue these activities can be tricky. If the person you care for has quiet time during the day (napping or watching TV), use that time to join an online support group, talk to a therapist over the phone, or sit quietly and meditate.
“We've found in our research that there is a huge benefit for both people with dementia and their caregivers to increasing the number of pleasant and meaningful activities they engage in during the day,” says Dr. McCurry. “This can be something as small as putting a bird feeder in your yard and going outside for a few minutes each day to watch the birds frolicking, or looking through an old photo album and playing some favorite music.” Engagement in these types of activities improves mood or reduces boredom and daytime napping, which in turn can improve sleep.