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How well do you sleep?
I see that there are many posts on this forum regarding sleeping disturbances, yet many of them are old, so I'm posting this as a poll.
How many of you do not get a good night's sleep, even though fatigue is an issue?
Other than usually being able to fall asleep normally (I go to bed at 10 to wake up at 6), I have no true sleep pattern anymore. Looking back over doctor's notes, this dates back to 2002.
Sometimes I wake up after 3 hours of sleep and cannot fall back asleep. No known reason for waking up. Othertimes it's a bit longer sleep without any reason for waking up.
Othertimes, I will wake up between 3 and 4 feeling too warm. I'm post menopausal (ended at age 43) with no history of hot flashes or night sweats. When I say warm, I mean just that, warm, but not hot. Throw off the comforter for 5 minutes and I'm cold with the upstairs temperature at 60.
Sometimes rolling over in bed will cause vertigo strong enough to wake me out of my sleep. This can continue for hours.
Once I wake up, it is seldom that I go back to sleep. If I do, it is touch and go whether I wake myself or the alarm clock gets me up. I used to have such a regular sleep pattern, which meant I slept through the night and woke at the same time each morning without an alarm clock. Not so anymore!! When I do get out of bed, I do not feel rested or fresh; boy, do I miss that feeling.
I have a scrip for Klonopin which I take at night if I have had too many nights of less than 5 hours sleep. Even that does not help me sleep through the night. I took AdvilPM last night because I woke up after 3 hours sleep the night before and I did get a solid 8 hours sleep last night. Still feel exhausted.
Curious to know your experiences.
How many of you do not get a good night's sleep, even though fatigue is an issue?
Other than usually being able to fall asleep normally (I go to bed at 10 to wake up at 6), I have no true sleep pattern anymore. Looking back over doctor's notes, this dates back to 2002.
Sometimes I wake up after 3 hours of sleep and cannot fall back asleep. No known reason for waking up. Othertimes it's a bit longer sleep without any reason for waking up.
Othertimes, I will wake up between 3 and 4 feeling too warm. I'm post menopausal (ended at age 43) with no history of hot flashes or night sweats. When I say warm, I mean just that, warm, but not hot. Throw off the comforter for 5 minutes and I'm cold with the upstairs temperature at 60.
Sometimes rolling over in bed will cause vertigo strong enough to wake me out of my sleep. This can continue for hours.
Once I wake up, it is seldom that I go back to sleep. If I do, it is touch and go whether I wake myself or the alarm clock gets me up. I used to have such a regular sleep pattern, which meant I slept through the night and woke at the same time each morning without an alarm clock. Not so anymore!! When I do get out of bed, I do not feel rested or fresh; boy, do I miss that feeling.
I have a scrip for Klonopin which I take at night if I have had too many nights of less than 5 hours sleep. Even that does not help me sleep through the night. I took AdvilPM last night because I woke up after 3 hours sleep the night before and I did get a solid 8 hours sleep last night. Still feel exhausted.
Curious to know your experiences.
Enough meds and I can sleep 4 to five hours before the pain sets back in and I wake.
Without the meds I cannot sleep at all because of the pain and because I just can't seem to get to sleep.
I had a sleep study several months ago. I was told I have multiple arousal during the night
My sleep doc said...prob the anxiety...lol. I kicked him to the curve. Now I just due my best to get whatever sleep I can.
terry
Without the meds I cannot sleep at all because of the pain and because I just can't seem to get to sleep.
I had a sleep study several months ago. I was told I have multiple arousal during the night
My sleep doc said...prob the anxiety...lol. I kicked him to the curve. Now I just due my best to get whatever sleep I can.
terry
For the lastf 3 months I have slept really badly but I think this was largely due to stress and worry about diagnosis etc. Now I sleep so much better and if anything jsut feeel a bit groggy in the morning and it takes me a while to get up.
I am on 20mg of Amitriptyline nad 300 mg of Gabapentin at night (and 300 morning and 300mg lunch time also). I am sure that the night time drugs help to knock me out. I am dreaming again now which.
Sarah
I am on 20mg of Amitriptyline nad 300 mg of Gabapentin at night (and 300 morning and 300mg lunch time also). I am sure that the night time drugs help to knock me out. I am dreaming again now which.
Sarah
COMMUNITY LEADER
I'm not sure how to classify my sleep pattern, its gone haywire for sure, its a combination of insomnia and hyper-sleep. What i think makes it really weird is that i feel more alert and rested during the insomnia phase, than i do when in a hyper-sleep phase.
I dont have any trouble once aseep, apart from the trips to the bathroom, if i'm going to sleep, i'm like a log until the next bathroom call. In hyper-sleep i turn into a bear, nothing wakes me, waking up is difficult to do but once awake i still feel the need for more sleep, easy for me to sleep 16-18 hours at a time.
I'm currently in an insomnia phase, last night i made my self go to bed just before 1.30am, still didn't feel sleepy, the last time i looked at the clock it was just passed 4 and i still hadn't reached a sleepy state. I dont let it bother me, its out of my control though i do make the best of it, i rest and relax, if i do sleep its a bonus.
It doesnt seem to make much sense but i'm not experiencing fatigue, logic dictates that if your not getting your 8 hours sleep to expect some level of fatigue the next day, i dont and as i said i feel more rested when in an insomnia phase, than i do when in a hyper-sleep phase. Just more of the weird!! lol
Cheers.......JJ
I dont have any trouble once aseep, apart from the trips to the bathroom, if i'm going to sleep, i'm like a log until the next bathroom call. In hyper-sleep i turn into a bear, nothing wakes me, waking up is difficult to do but once awake i still feel the need for more sleep, easy for me to sleep 16-18 hours at a time.
I'm currently in an insomnia phase, last night i made my self go to bed just before 1.30am, still didn't feel sleepy, the last time i looked at the clock it was just passed 4 and i still hadn't reached a sleepy state. I dont let it bother me, its out of my control though i do make the best of it, i rest and relax, if i do sleep its a bonus.
It doesnt seem to make much sense but i'm not experiencing fatigue, logic dictates that if your not getting your 8 hours sleep to expect some level of fatigue the next day, i dont and as i said i feel more rested when in an insomnia phase, than i do when in a hyper-sleep phase. Just more of the weird!! lol
Cheers.......JJ
I have a really bad back just for added fun with my MS freaky nerve pain. LOL
My routine....
I take 50-75 mg of Benadryl at night. I stop drinking fluid at 5pm with only enough to wet my mouth before bed. That gets me about 5-7 hours of really good sleep. Sometimes I take a Soma when I have spasms (usually my right arm), but it's not so often that I want to take something daily.
Sarah
My routine....
I take 50-75 mg of Benadryl at night. I stop drinking fluid at 5pm with only enough to wet my mouth before bed. That gets me about 5-7 hours of really good sleep. Sometimes I take a Soma when I have spasms (usually my right arm), but it's not so often that I want to take something daily.
Sarah
this is another one of those questions that make me question whether I really have MS ... well of course I do because ALL of my tests are positive and my MRI is classic MS. But still its fun to wonder.
I have next to no problems with sleep. I have been waking a bit earlier than usual, but only by 15-30 minutes. Stopping the nocturia (waking to urinate) has made all the difference in my sleep pattern. I get a good 6-7 hours of straight sleep every night.
Now as I am typing this, and yawning, I have to wonder if some of my good sleep is coming from the drug combination I take at night , always after 10 pm. I'm taking 20mg baclofen, 10mg lipitor, and norvasc (heart drug). And the topper is my copaxone injection. Maybe its the perfect nightcap?
Wish you all slept better - it makes a world of difference to everything when I'm rested.
Lu
I have next to no problems with sleep. I have been waking a bit earlier than usual, but only by 15-30 minutes. Stopping the nocturia (waking to urinate) has made all the difference in my sleep pattern. I get a good 6-7 hours of straight sleep every night.
Now as I am typing this, and yawning, I have to wonder if some of my good sleep is coming from the drug combination I take at night , always after 10 pm. I'm taking 20mg baclofen, 10mg lipitor, and norvasc (heart drug). And the topper is my copaxone injection. Maybe its the perfect nightcap?
Wish you all slept better - it makes a world of difference to everything when I'm rested.
Lu
I just wanted to say, this Monday I'm going in to a sleep lab and I'm really excited!
For me, sleep issues are my number-one problem. I get sleep attacks in the day, and sleep too much during the night (I love me some 12 hour nights if I can get them!). I'm currently on Ritalin, 10mg 3x a day to keep awake, and it's a BIG help. The sleep doctor I just saw last week was talking about switching to long-acting in the morning, and then a small dose of short-acting in the afternoon - sounds interesting; if I do switch, I'll let you all know how it goes! Are any of you other folks taking Ritalin for sleepiness, btw?
I'm not dx with MS, and the sleep doctor I talked to said he wants to check for atypical seizure activity during my sleep, because my CSF had too many white cells. He says these seizures could go unnoticed, and would explain the daytime sleepiness - and also some occasional sleepwalking too! This would be very unlikely, though, he says. I just wanted to throw it out there in case this might be an issue for anybody else!
When I sleep, I think I'm almost always totally immobile (a really good thing!). Sounds like a lot of you folks are having trouble with wiggling around :( Oh, but I wanted to ask - occasionally, I move around a LOT when I'm sleeping. Like, walking around the house, or calling my mom on the phone (haha, yikes). Anybody else? This only started up when I started getting sick, in the last couple years, so I wonder if it's connected.
For me, sleep issues are my number-one problem. I get sleep attacks in the day, and sleep too much during the night (I love me some 12 hour nights if I can get them!). I'm currently on Ritalin, 10mg 3x a day to keep awake, and it's a BIG help. The sleep doctor I just saw last week was talking about switching to long-acting in the morning, and then a small dose of short-acting in the afternoon - sounds interesting; if I do switch, I'll let you all know how it goes! Are any of you other folks taking Ritalin for sleepiness, btw?
I'm not dx with MS, and the sleep doctor I talked to said he wants to check for atypical seizure activity during my sleep, because my CSF had too many white cells. He says these seizures could go unnoticed, and would explain the daytime sleepiness - and also some occasional sleepwalking too! This would be very unlikely, though, he says. I just wanted to throw it out there in case this might be an issue for anybody else!
When I sleep, I think I'm almost always totally immobile (a really good thing!). Sounds like a lot of you folks are having trouble with wiggling around :( Oh, but I wanted to ask - occasionally, I move around a LOT when I'm sleeping. Like, walking around the house, or calling my mom on the phone (haha, yikes). Anybody else? This only started up when I started getting sick, in the last couple years, so I wonder if it's connected.
i think i'm dealing with reaction to meds, but yes, my sleep has been different since dx. i'm having trouble falling asleep, then trouble staying asleep. for a while it was because of the nocturnal potty trips.. now? medication? maybe my body's used to the potty trip schedule? i don't know, but i'm up every 2-3 hours. no babies, no pain, no vertigo, just wide awake multiple time throughout the night.
i got advice once from a therapist that's stuck with me...i'm trying very hard to acknowledge it whenever i'm up in the middle of the night: "if you can't sleep, fine. lay quietly in the dark and remember that even that is doing some good. quiet, mindful meditation is also restorative. not to the same extent as sleep, but you're still doing your body good to lay quietly in a comfortable dark space." now, when it's 3 am, that advice sometimes makes me want to punch someone, but still....it's true...and it's good to keep in mind.
i got advice once from a therapist that's stuck with me...i'm trying very hard to acknowledge it whenever i'm up in the middle of the night: "if you can't sleep, fine. lay quietly in the dark and remember that even that is doing some good. quiet, mindful meditation is also restorative. not to the same extent as sleep, but you're still doing your body good to lay quietly in a comfortable dark space." now, when it's 3 am, that advice sometimes makes me want to punch someone, but still....it's true...and it's good to keep in mind.
I voted "minor sleep disturbances" but if I were voting about a month ago I would have voted major. Up until a month ago, my pattern at night was: sleep well for 2 or 3 hours, wake up because I'm uncomfortable then toss and turn for a while, fall asleep, then baby wakes up, take care of her, toss and turn for an hour or more, fall asleep, wake up after 30 minutes, toss and turn, fall asleep, baby wakes up, etc. Most nights I was getting maybe 4-5 hours sleep, and trying to "catch up" on sleep on the weekends.
A month ago two things happened at just about the same time: my doctor started me on neurontin once a day at night (the prescription is for up to 500mg, I usually take 300, sometimes 400, only twice have I taken the full 500mg). The neurontin has helped to calm the discomfort that was keeping me awake.
The second thing that happened is the baby finally started only waking up once a night, and in the last week she actually slept all night a few times! That helps too.
I'm now getting a good solid 5 hours sleep, then waking to turn over (or give baby her bottle) then I'm right back to sleep until it is time to get up. So, though I still wake up once a night or so, it is only for a few minutes. I'm getting a good 7-8 hours every night now!
~Jess
A month ago two things happened at just about the same time: my doctor started me on neurontin once a day at night (the prescription is for up to 500mg, I usually take 300, sometimes 400, only twice have I taken the full 500mg). The neurontin has helped to calm the discomfort that was keeping me awake.
The second thing that happened is the baby finally started only waking up once a night, and in the last week she actually slept all night a few times! That helps too.
I'm now getting a good solid 5 hours sleep, then waking to turn over (or give baby her bottle) then I'm right back to sleep until it is time to get up. So, though I still wake up once a night or so, it is only for a few minutes. I'm getting a good 7-8 hours every night now!
~Jess
a roll of the dice, totally random if i will sleep well. there things i've learned over the years not to prior to bedtime to help, but that is no guarantee.
Q said it well witht he viciaous cycles
Q said it well witht he viciaous cycles
Absolutely disturbances in sleep are a major problem in MS. Insomnia is a major issue, but hypersomnia (sleeping too much happens, too.) We had a whole slew of threads a couple years ago, in which someone found studies showing that sleep apnea is more common in MS. The disease affects our entire central nervous system, including those areas which regulate alertness and sleep.
Then there are the discomforts of MS - spasms, urinary frequency, paresthesias and such - that disturb our sleep on a secondary basis.
On top of that we often have meds that affect sleep in one way or another.
So, poor sleep is definitely a factor in our fatigue - and it does seem to be a vicious cycle.
Quix
Then there are the discomforts of MS - spasms, urinary frequency, paresthesias and such - that disturb our sleep on a secondary basis.
On top of that we often have meds that affect sleep in one way or another.
So, poor sleep is definitely a factor in our fatigue - and it does seem to be a vicious cycle.
Quix
I have diagnosed sleep apnea in addition to MS. I've used c-pap for several years and it helps but wasn't the miracle so many people had told me it would be. That could have been a big clue for my MS diagnosis, if I'd only known then what I know now.
Prior to c-pap I slept 7-10 hours a night and took long naps during the day and still couldn't function well mentally or stay awake when I needed to. And then RLS would sometimes keep me awake for hours on end (iron supplements fixed a lot of that). I thought I slept soundly but was actually awake >80 times an hour.
With c-pap I don't get up near as often to urinate during the night. Apparently if I'm not awake, I don't assume that's what I woke up to do. Noticed improvement over time and didn't take as many daytime naps. Still never felt refreshed.
With c-pap and Provigil (and CoQ10) I seldom nap during the day and the thought process are improved -- even great at times. I feel ready to get up after about 6-7 hours of sleep although I've never been a morning person so don't expect to awaken cheery. With the MS I still feel like my body is dragging a fair amount of the time.
It's sad to think about. Still, I'm thankful to wind and chemistry that I'm able to sleep and therefore function.
Mary
Prior to c-pap I slept 7-10 hours a night and took long naps during the day and still couldn't function well mentally or stay awake when I needed to. And then RLS would sometimes keep me awake for hours on end (iron supplements fixed a lot of that). I thought I slept soundly but was actually awake >80 times an hour.
With c-pap I don't get up near as often to urinate during the night. Apparently if I'm not awake, I don't assume that's what I woke up to do. Noticed improvement over time and didn't take as many daytime naps. Still never felt refreshed.
With c-pap and Provigil (and CoQ10) I seldom nap during the day and the thought process are improved -- even great at times. I feel ready to get up after about 6-7 hours of sleep although I've never been a morning person so don't expect to awaken cheery. With the MS I still feel like my body is dragging a fair amount of the time.
It's sad to think about. Still, I'm thankful to wind and chemistry that I'm able to sleep and therefore function.
Mary
Being able to stay asleep at night has taken a combination of medications like neurontin, Klonoptin, and Baclofen for pain and muscle cramping and my c-pap.
Those help but I still sleep a lot during the day so I have provigil and coffee to help.
My days are broken up into blocks it seems. I sleep, get somethings done, sleep again.
It is not easy and is difficult. I have 24 hours of help with my kids and that is great! Even with that I have a difficult time getting things done for myself.
I want to make cookies for my kids but still have not found the energy to do it.
The most difficult thing is accepting that life will never be what it was. It is a new life you live when you are diagnosed with MS. You just have to go with it and make the adjustments.
Sorry!! Got off track. I would say good rest and sleep is very near the top of the list with my MS.
LA dx'd MS
Those help but I still sleep a lot during the day so I have provigil and coffee to help.
My days are broken up into blocks it seems. I sleep, get somethings done, sleep again.
It is not easy and is difficult. I have 24 hours of help with my kids and that is great! Even with that I have a difficult time getting things done for myself.
I want to make cookies for my kids but still have not found the energy to do it.
The most difficult thing is accepting that life will never be what it was. It is a new life you live when you are diagnosed with MS. You just have to go with it and make the adjustments.
Sorry!! Got off track. I would say good rest and sleep is very near the top of the list with my MS.
LA dx'd MS
dont sleep alot- awake all night sometimes- so i take pm pills that does help some - have slept to
much too- lol crasy!! tick
much too- lol crasy!! tick
Sleep, what is that? :)
I have no sleep pattern at all any more. Some nights I will sleep only a couple of hours while other nights it will be 14 or 15 hours. There are 3 things that mess up my sleep.
1) Too warm. I keep my home at 68 almost constantly and keep my feet uncovered because if I get too warm my aches keep me from sleeping.
2) Bad dreams. I suffer from PTSD and these dreams will disturb my sleep for several nights in a row about twice a month.
3) Stress. When I get too stressed I just can't turn off my mind in order to sleep/ Meedless to say I try my best to keep the stree out of my life.
Dennis
I have no sleep pattern at all any more. Some nights I will sleep only a couple of hours while other nights it will be 14 or 15 hours. There are 3 things that mess up my sleep.
1) Too warm. I keep my home at 68 almost constantly and keep my feet uncovered because if I get too warm my aches keep me from sleeping.
2) Bad dreams. I suffer from PTSD and these dreams will disturb my sleep for several nights in a row about twice a month.
3) Stress. When I get too stressed I just can't turn off my mind in order to sleep/ Meedless to say I try my best to keep the stree out of my life.
Dennis
I never realized sleep issues could be MS too!
I seem to toss and turn all night long....and my legs, calves, ache and ache. I try a pillow between my knees but that does not help either.
Everyone says how important it is to get a good nights sleep with MS......HOW DO WE DO THAT????
I seem to toss and turn all night long....and my legs, calves, ache and ache. I try a pillow between my knees but that does not help either.
Everyone says how important it is to get a good nights sleep with MS......HOW DO WE DO THAT????
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