Sleep and Multiple Sclerosis
Written by Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego
“The main facts in human life are five: birth, food, sleep, love and death.”
― E.M. Forster
“I wonder why I don't go to bed and go to sleep. But then it would be tomorrow, so I decide that no matter how tired, no matter how incoherent I am, I can skip on hour more of sleep and live.”
― Sylvia Plath, The Unabridged Journals of Sylvia Plath
Why do we so often forget how to sleep, as we grow older? Even without a chronic disease like Multiple Sclerosis our lifestyles and the changes to our body with aging conspire to interfere with restful sleep. Ask any woman going through menopause about their sleep and you will hear frustrating tales of awakenings for a variety of reasons many unexplained.
Even well before the onslaught of middle age, our lifestyles become a hazard to sleep; we find ourselves with too little time between work and family responsibilities to take proper care of themselves. We stop exercising regularly, eat poorly, worry excessively and consume various drugs, some prescribed and others like alcohol and nicotine used to melt away our stresses and the burdens of feeling overwhelmed. Bad habits are formed early and persist.
As the quote by Sylvia Plath (by the way she is not a good person from whom you should take advice regarding sleep) implies, from a young age we learn to burn the midnight candle too often and attempt to emulate those who never seem to require sleep. As people grow older they often develop strange beliefs or habits that actually worsen their sleep; some come to believe that they cannot fall asleep without the TV on or without a sleep aid and never attempt to adjust their sleep behavior. Often the problem is simply a result of a chronically disrupted circadian rhythm, yet the person insists it is simply impossible for them to fall asleep before 2 or 3 am. For people with MS, the problems with sleep are all too often blamed on the disease and simple measures are not attempted to control the insomnia before resorting to sleep aides or treatment of MS related symptoms perceived to be interfering with sleep.
The cure for insomnia in MS patients and the excessive daytime sleepiness that it creates begins with the doctor taking a good history and patient being receptive to changing their current sleep behaviors. First, without excessive daytime sleepiness there is rarely a problem that requires treatment. Some people just require less sleep as they grow older; fewer still never require much sleep, yet never experience problems with feeling excessive sleepy during the day.
With this caveat in mind it is often useful to separate sleep problems into three categories: those associated with sleep onset insomnia, those associated with nocturnal awakenings and those without perceived insomnia or awakenings but clearly creating excessive daytime sleepiness.
Sleep onset insomnia (failure to get to sleep initially) is most often due to acute stressors, anxiety, depression (unipolar or bipolar), drugs (e.g. alcohol, stimulants including nicotine), eating large meals too late, pain, spasms when lying supine, restless legs syndrome or a disrupted circadian rhythm. These problems tend to be easy to identify and solve although they often require a willingness to change sleep behaviors (see list below). Medication to help with sleep onset insomnia is sometimes needed but only for short-term use. Long term use of medications to help with sleep should only be used after a complete evaluation.
The same problems associated with sleep onset insomnia may also be responsible for awakenings during sleep, although the list becomes even longer with the inclusion of nocturnal awakenings to urinate because of bladder dysfunction, the co-existence of other medical conditions that interfere with sleep (Diabetes, lung disease, congestive heart failure etc.) and nocturnal hypoventilation in more severely disabled MS patients.
The third category, excessive daytime sleepiness without perceived awakening, is often the result of a primary or secondary sleep disorder (obstructive sleep apnea, narcolepsy, nocturnal myoclonus, periodic limb movements of sleep) although your sleep partner is often able to provide the key history of snoring, suddenly disrupted breathing or leg movements that interfere with their sleep! Nocturnal hypoventilation can also present with feeling un-refreshed, confused and anxious on awakening because of not getting enough oxygen during sleep.
As you have probably guessed by now, there is rarely one cause for your interrupted sleep and excessive daytime sleepiness. MS itself is often associated with daytime fatigue, a similar concept, but patients rarely describe this “fatigue” as the kind of daytime sleepiness one experiences after a bad night of sleep. Instead, MS fatigue is usually described as malaise, lassitude or an inability to move or think further without rest, more often without the craving to sleep during the day. The difficulty in diagnosis arises when a person experiences both daytime primary MS related fatigue and excessive sleepiness from disrupted sleep.
So how should you manage your disrupted sleep? First, determine if your circadian rhythm is disrupted. This is usually obvious if you chronically find yourself unable to sleep until the middle of the night and then feel exhausted during the day because of the need to get up sooner than you would like. You will need to follow the advice listed below to improve your sleep hygiene but you may also need help in resetting your body’s clock; some people find success in resetting their clock by taking 3 mg of melatonin (an over the counter medication available at almost any pharmacy or supplement store) 2 hours before you would like to go to sleep. If this does not work after a week discuss the problem further with your physician. Rarely, a sleep specialist is needed to help people with chronic idiopathic (meaning unknown cause) insomnia. Next, you will need to adhere to the following steps to improve your sleep hygiene. This can be surprisingly difficult since many of us break these rules with regularity.
Lastly, if your problem with sleep or excessive daytime sleepiness is not easily managed with these adjustments or you are unable to follow through with these suggestions because of your MS or other medical problems, you will need to discuss these problems further with your primary care doctor or MS specialist. Common additional solutions may require treatment of depression, treatments of bladder problems to limit nocturnal awakening to urinate and treatment of pain and nocturnal spasms. A good sleep history should be obtained; it is often advisable to obtain a polysomnogram (also called a sleep study) and possibly an MSLT (multiple sleep latency test) if there is any suggestion of a sleep disorder or if attempts at treatment the insomnia fail to cure your excessive daytime sleepiness.
“Suenos con los angeles”
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego
“The main facts in human life are five: birth, food, sleep, love and death.”
― E.M. Forster
“I wonder why I don't go to bed and go to sleep. But then it would be tomorrow, so I decide that no matter how tired, no matter how incoherent I am, I can skip on hour more of sleep and live.”
― Sylvia Plath, The Unabridged Journals of Sylvia Plath
Why do we so often forget how to sleep, as we grow older? Even without a chronic disease like Multiple Sclerosis our lifestyles and the changes to our body with aging conspire to interfere with restful sleep. Ask any woman going through menopause about their sleep and you will hear frustrating tales of awakenings for a variety of reasons many unexplained.
Even well before the onslaught of middle age, our lifestyles become a hazard to sleep; we find ourselves with too little time between work and family responsibilities to take proper care of themselves. We stop exercising regularly, eat poorly, worry excessively and consume various drugs, some prescribed and others like alcohol and nicotine used to melt away our stresses and the burdens of feeling overwhelmed. Bad habits are formed early and persist.
As the quote by Sylvia Plath (by the way she is not a good person from whom you should take advice regarding sleep) implies, from a young age we learn to burn the midnight candle too often and attempt to emulate those who never seem to require sleep. As people grow older they often develop strange beliefs or habits that actually worsen their sleep; some come to believe that they cannot fall asleep without the TV on or without a sleep aid and never attempt to adjust their sleep behavior. Often the problem is simply a result of a chronically disrupted circadian rhythm, yet the person insists it is simply impossible for them to fall asleep before 2 or 3 am. For people with MS, the problems with sleep are all too often blamed on the disease and simple measures are not attempted to control the insomnia before resorting to sleep aides or treatment of MS related symptoms perceived to be interfering with sleep.
The cure for insomnia in MS patients and the excessive daytime sleepiness that it creates begins with the doctor taking a good history and patient being receptive to changing their current sleep behaviors. First, without excessive daytime sleepiness there is rarely a problem that requires treatment. Some people just require less sleep as they grow older; fewer still never require much sleep, yet never experience problems with feeling excessive sleepy during the day.
With this caveat in mind it is often useful to separate sleep problems into three categories: those associated with sleep onset insomnia, those associated with nocturnal awakenings and those without perceived insomnia or awakenings but clearly creating excessive daytime sleepiness.
Sleep onset insomnia (failure to get to sleep initially) is most often due to acute stressors, anxiety, depression (unipolar or bipolar), drugs (e.g. alcohol, stimulants including nicotine), eating large meals too late, pain, spasms when lying supine, restless legs syndrome or a disrupted circadian rhythm. These problems tend to be easy to identify and solve although they often require a willingness to change sleep behaviors (see list below). Medication to help with sleep onset insomnia is sometimes needed but only for short-term use. Long term use of medications to help with sleep should only be used after a complete evaluation.
The same problems associated with sleep onset insomnia may also be responsible for awakenings during sleep, although the list becomes even longer with the inclusion of nocturnal awakenings to urinate because of bladder dysfunction, the co-existence of other medical conditions that interfere with sleep (Diabetes, lung disease, congestive heart failure etc.) and nocturnal hypoventilation in more severely disabled MS patients.
The third category, excessive daytime sleepiness without perceived awakening, is often the result of a primary or secondary sleep disorder (obstructive sleep apnea, narcolepsy, nocturnal myoclonus, periodic limb movements of sleep) although your sleep partner is often able to provide the key history of snoring, suddenly disrupted breathing or leg movements that interfere with their sleep! Nocturnal hypoventilation can also present with feeling un-refreshed, confused and anxious on awakening because of not getting enough oxygen during sleep.
As you have probably guessed by now, there is rarely one cause for your interrupted sleep and excessive daytime sleepiness. MS itself is often associated with daytime fatigue, a similar concept, but patients rarely describe this “fatigue” as the kind of daytime sleepiness one experiences after a bad night of sleep. Instead, MS fatigue is usually described as malaise, lassitude or an inability to move or think further without rest, more often without the craving to sleep during the day. The difficulty in diagnosis arises when a person experiences both daytime primary MS related fatigue and excessive sleepiness from disrupted sleep.
So how should you manage your disrupted sleep? First, determine if your circadian rhythm is disrupted. This is usually obvious if you chronically find yourself unable to sleep until the middle of the night and then feel exhausted during the day because of the need to get up sooner than you would like. You will need to follow the advice listed below to improve your sleep hygiene but you may also need help in resetting your body’s clock; some people find success in resetting their clock by taking 3 mg of melatonin (an over the counter medication available at almost any pharmacy or supplement store) 2 hours before you would like to go to sleep. If this does not work after a week discuss the problem further with your physician. Rarely, a sleep specialist is needed to help people with chronic idiopathic (meaning unknown cause) insomnia. Next, you will need to adhere to the following steps to improve your sleep hygiene. This can be surprisingly difficult since many of us break these rules with regularity.
- Avoid long periods of inactivity during the day (example: sitting for more than 2 hours) if possible; get up and take a walk or walk somewhere for lunch if you are able; try to follow a strenuous exercise routine 5 days a week but no less than 3 days a week once cleared by your physician for this activity. You may benefit from working with a physical therapist or trainer to accomplish this goal
- If taking stimulants for fatigue (examples are modafinil (Provigil), amphetamines (Adderall), methylphenidate (Ritalin)) try to cut down or eliminate any doses taken after the morning. If taking other medications that interfere with sleep like medications for asthma, talk to you doctor about adjusting the dose or substituting another medication, if possible
- If taking away doses of stimulants increases your level of daytime fatigue, take a short nap during the day and adjust your activities (including work schedule) accordingly. This may require consultation with your physician and an occupational therapist to assist with activity adjustments.
- Relax in the evening at least an hour or two before bedtime. Meditation is helpful if you have difficulty unwinding or relaxing. Avoid rehashing issues, going through events of the next day or discussing a high tension topic just before bed
- Avoid caffeinated beverages 6 hours before sleep, avoid alcohol 4 hours before sleep, and avoid nicotine an hour before bedtime
- If you are getting up in the middle of the night to urinate more than once, especially if you have difficulty getting back to sleep, consume your required daily fluid intact between waking and 4 hours before bedtime. You should discuss this problem with your physician if the problem persists. We usually can find a way to eliminate this problem.
- Eat no more than a snack and perhaps a small amount of warm milk before bedtime; consume heavy meals at least 4 hours before bedtime
- Avoid strenuous exercise in the evening; light yoga, stretching and sex is fine
- Follow a bedtime routine and stick with it
- Go to bed when tired; when ready to sleep make sure the room is dark and at a comfortable temperature with comfortable bed clothing. If you are a light sleeper, ear plugs and eye masks can be helpful
- Use the bedroom only for reading, sleeping and sex; remove the TV or do not watch it when you are trying to fall asleep.
- If you are unable to fall asleep after 30 to 45 minutes, get out of bed (if you can) and read or do something relaxing until you are sleepy and want to attempt sleeping again. Do not stare into the dark counting sheep or getting frustrated with your inability to fall asleep. Similarly, if you awaken at night and are not able to get back to sleep in a reasonable amount of time, read until you are sleepy again. If you are able to do so, get out of bed and go to a different room. You do not want to associate being in bed with being unable to sleep.
Lastly, if your problem with sleep or excessive daytime sleepiness is not easily managed with these adjustments or you are unable to follow through with these suggestions because of your MS or other medical problems, you will need to discuss these problems further with your primary care doctor or MS specialist. Common additional solutions may require treatment of depression, treatments of bladder problems to limit nocturnal awakening to urinate and treatment of pain and nocturnal spasms. A good sleep history should be obtained; it is often advisable to obtain a polysomnogram (also called a sleep study) and possibly an MSLT (multiple sleep latency test) if there is any suggestion of a sleep disorder or if attempts at treatment the insomnia fail to cure your excessive daytime sleepiness.
“Suenos con los angeles”
Sleep Apnea
Written by Lori Ann Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis Treatment and Research
#sleepapnea #multiplesclerosis
“I don’t cough when I eat… I cough when I sleep”
This occasionally happens to me. As you know (because you’ve already read the part of this website on swallowing), Speech Language Pathologists (SLPs) treat swallowing issues. So when a patient says “I cough…” for any reason, it usually means an automatic referral to the SLP. When a patient says to me “I cough, but only when I sleep”, I do a swallow evaluation just to make sure there is nothing obviously wrong inside that persons mouth, or when they swallow food. Then I ask if the patient has a breathing machine (CPAP, VPAP- one that you wear at night and usually has a mask). And about 75% of the time the patient who “chokes” in the night, will say to me “Yes, I have one of those, but it is too loud and it keeps my significant other awake, so I don’t use it”. Or they say, “The mask is uncomfortable, so I don’t use it”. Or they say, “It’s broken”.
At this point in my evaluation, I usually sigh.
Then I ask the following questions:
1. How long have you had the machine and do you remember which physician ordered it for you?
2. Why did the physician order it for you?
To that second question, I often get responses similar to “I wasn’t breathing during the night”, or “I stopped breathing too much during the night”, or straight up “I was diagnosed with sleep apnea”.
So let’s go back to the issue of fatigue. If you have a breathing machine and are not using it, it might not be fatigue you are feeling during the day. You might just be tired because you are not getting good rest during the night.
Here is a link that talks in more detail about sleep apnea.
http://www.sleepeducation.com/essentials-in-sleep/sleep-apnea
In this situation then, what can be changed to make you feel better? Consider using that machine again. If you haven’t used it for a very long time, you might want to take it back to the physician to see if the last setting you were using it at is still correct. If it’s broken, definitely take it back to the physician. When you are at the physician’s, confess to the reason you stopped using it in the first place. If the mask was uncomfortable, there might be another option. If it was keeping your significant other awake, have a conversation with your significant other. If use of this machine is important to your ongoing health, then you need to use it. Even if it is keeping them awake, you still need to use it. And you need to have a conversation about some kind of compromise.
When I speak to significant others of patients who have breathing machines, however, usually they ae very supportive, saying the noise of the machine is a little like white noise, and easy to get used to. Sometime, they also say the noise of the machine is better than listening to the patient snore, stop breathing, choke, snore, etc. all night. So, every couple is different… have that conversation.
So, this is one more issue that needs to be thought through when a patient says they are “fatigued”
Is this something you can change?
Written by Lori Ann Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis Treatment and Research
#sleepapnea #multiplesclerosis
“I don’t cough when I eat… I cough when I sleep”
This occasionally happens to me. As you know (because you’ve already read the part of this website on swallowing), Speech Language Pathologists (SLPs) treat swallowing issues. So when a patient says “I cough…” for any reason, it usually means an automatic referral to the SLP. When a patient says to me “I cough, but only when I sleep”, I do a swallow evaluation just to make sure there is nothing obviously wrong inside that persons mouth, or when they swallow food. Then I ask if the patient has a breathing machine (CPAP, VPAP- one that you wear at night and usually has a mask). And about 75% of the time the patient who “chokes” in the night, will say to me “Yes, I have one of those, but it is too loud and it keeps my significant other awake, so I don’t use it”. Or they say, “The mask is uncomfortable, so I don’t use it”. Or they say, “It’s broken”.
At this point in my evaluation, I usually sigh.
Then I ask the following questions:
1. How long have you had the machine and do you remember which physician ordered it for you?
2. Why did the physician order it for you?
To that second question, I often get responses similar to “I wasn’t breathing during the night”, or “I stopped breathing too much during the night”, or straight up “I was diagnosed with sleep apnea”.
So let’s go back to the issue of fatigue. If you have a breathing machine and are not using it, it might not be fatigue you are feeling during the day. You might just be tired because you are not getting good rest during the night.
Here is a link that talks in more detail about sleep apnea.
http://www.sleepeducation.com/essentials-in-sleep/sleep-apnea
In this situation then, what can be changed to make you feel better? Consider using that machine again. If you haven’t used it for a very long time, you might want to take it back to the physician to see if the last setting you were using it at is still correct. If it’s broken, definitely take it back to the physician. When you are at the physician’s, confess to the reason you stopped using it in the first place. If the mask was uncomfortable, there might be another option. If it was keeping your significant other awake, have a conversation with your significant other. If use of this machine is important to your ongoing health, then you need to use it. Even if it is keeping them awake, you still need to use it. And you need to have a conversation about some kind of compromise.
When I speak to significant others of patients who have breathing machines, however, usually they ae very supportive, saying the noise of the machine is a little like white noise, and easy to get used to. Sometime, they also say the noise of the machine is better than listening to the patient snore, stop breathing, choke, snore, etc. all night. So, every couple is different… have that conversation.
So, this is one more issue that needs to be thought through when a patient says they are “fatigued”
Is this something you can change?
