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MS and Sleep
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MS and Sleep

I give! I'm not sleeping.  It's just not happening.  Gone are the days of not being able to wake up.  Though I'm tired and dragging, eyes look like zombie'ishI - not getting even a wink.  Last night  - not even a flicker of dosing.

I take Ambien.  I've had wine. Have tried to do the same routine bit every night, no late caffeine, etc.

Both fatigue and insomnia are life altering.  And, so much daily living and functioning is affected and counting on some normalcy or at least a happy medium. Just how long can you go though before you crack?

Oh, and I can't take any benzo's because they're likely the culprit of a past nasty allergic reaction.
Wah, wah, wah.
Help!

-shell
p.s. with all these extra hours of consciousness, I'd like to do a health page on this, so feel free to elaborate if you are interested!
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18 Comments Post a Comment
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Hey, Shell. You really need a sleep study. That will at least document what's going on with you and give you more credibility with your doctor, be it PCP or neuro.

Assuming nothing is blocking your breathing, etc., you could get a script for some kind of med that has somnolence as a side effect. There are quite a few, particularly psychiatric ones, where a small dose might do the trick. In my experience, Ambien and Lunesta lose their effectiveness after a while.

Believe me, I sympathize, since I have insomnia much of the time. I've done a lot of Googling about this, and have found next to nothing that says insomnia is a primary effect of MS. Lots about how pain can keep you awake, etc., etc., but little that says an MS lesion can be the culprit in itself. Perhaps sleep is too complex a function for that. I sure don't understand the science.

During the past few days I've had sort of a sleep marathon. Get up, do the basics, and zonk out again. This sort of thing happens to me once in a great while, just to punctuate the usual poor sleep routine, for some reason.

You just can't keep running on empty, so badger your doctors for help. It's dangerous for you physically, mentally and emotionally. And it's especially horrible to have MS fatigue yet not be able to rest.

I know others here will have good suggestions, so hang in there.

Hugs,
ess
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572651_tn?1333939396
Hi dear,
Try the der Dr Park over at the sleep disorder forum and see what he says about the MS and no sleep connection.  He is always there and very accessible.

I agree with Ess about the sleep study - I had it done about 3 months ago.  It's painless if you don't mind being wired to all those electrodes measuring your evry movement and breath.  It might hold some clues for you.

In the meantime, think about doing a sleep hygiene checklist too - the dos and don'ts that make for a good sleep experience.  But what you're describing here sounds so beyond all of those basics.  what the heck, it will give you something else to do while you don't sleep.  

No sleep makes me miserable - I can only image how you must be feeling.  I wish I could come and sing a lullabye - actually I wish I could sing but that's another thread.

lots of hugs to you,
L
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867787_tn?1318939830
Hello! Too experience this problem & posted in Dr. Parks forum. He answered very quickly & guided me to the topic that had been discussed before. I bumped the poll above up hoping it may help you as well ( it was very interesting). I was amazed at how he said that muscle relaxers can cause sleep problems in my post on his forum. Who knew? Again I hope this helps you. God bless you!
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847433_tn?1243013252
Hi,

My son is 26, I am 46, I havent slept through the night since he was born and I dont have MS, although I have just as many problems.  These sleep problems stem long before the current issues Im dealing with.  Sleep disorders are common in the general population as well.  In fact more people than not that I know have sleep problems of one kind or another.  More women than men.

Im supposed to go for a sleep study myself in the near future, was supposed to go since last year and havent gotten around to.  Just got another script for it yesterday.  Chronically fatiuged and sleep deprived.  Also drives alot of headaches.  

missy
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405614_tn?1329147714
I find that if I take a vacation from my Ambien once in a while, it helps; just one night off can help a lot.

I've totally given up caffeine (except in chocolate) and it hasn't help my sleep any.

I've been having some sleep marathons like ess mentioned since my neurological symptoms started; before that I couldn't even nap, ever.

It took several years before it was discovered that I have restless leg syndrome, and Neurontin and then Lyrica help with that, but I still have trouble sleeping.

The closest I ever came to cracking was sitting on the kitchen floor at 5 am trying to get my cat to take his medicine; I was ready to put him up for adoption, run away from home, etc.  I had a good cry, then Fluffy licked my hand, wanted to go back to bed, snuggled up next to me and purred, and I drifted off.

Sometimes I doubt I have fatigue, but I had a decade of sleepless nights before my neurological symptoms reared up, and never felt this way.  In Florida, I slept like a log on a wonderful bed in a quiet room, even took naps, but without my Provigil I wouldn't have been able to do much.  I did feel better with the more sleep, so I know how vital it is.

Have you done a sleep study?  Have you tried meditation?  A big "O"?  I didn't want to type the word and have it censored; I think you know what i mean. :o)

How about gentle massage, relaxing music, anything else that I can't think of right now?

Oh, if you get some good anwers, I'll be wanting to read them!

Wishing you a good night's restful sleep,

Kathy

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Avatar_f_tn
The thing is, Dr. Park's comments address only sleep positions and breathing, not insomnia. You can't be breathing wrong in your sleep if you're not sleeping.

Poor sleep quality is not the same as insomnia. If anyone can give any references on this issue and MS, it would be most appreciated.

ess
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667078_tn?1316004535
Shell,
  I used to stay up 48 hours sleep 2 stay up 48 on and on for years. I feel for you. After about fifty drugs I finally got on some that work. Everyone is different. I have a Doctor who tries new approaches. I take an anti convulsive , an anti anxiety in a small amount, and a  high blood pressure medication in a small amount ( I have low blood pressure). I also use light therapy in the morning. My only issue now is my stiff neck. it is hard to get comfortable to fall asleep.
Alex
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410281_tn?1254232664
Sleep problems are the worst.  I go in and out of them.  I'll never forget balling on the phone with my bosses boss because I had only had an hour of sleep.  I didn't even know why I was so upset. Ambien is a beautiful thing, but hasn't been working for me lately.  I've always also been an active sleeper - my parents wouldn't let me crawl in with them when I was little and my husband actually tried to tie my legs together with a robe belt once - with no avail. It's gotten much worse lately. Unfortunately, my work schedule is pretty wacked, which Im sure doesn't help, but I definately feel your pain.  Here I am, after all at 3am typing away.  If you find anything helpful, I'd love to hear about it!
Heather
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Hi Shell,

I'm so sorry, honey.  We've talked about this many times, as you know, I don't sleep either.  

I do wish I had a solution for you, because I know how miserable I am without sleep and I don't have 2 teenagers and a full time job, like you!!

I just don't know how you do it.  I'll keep the prayers coming and hope you can find a solution, so you can get some well deserved zzzzzzzzzzzzzz's.

Love & Hugs,
doni
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198419_tn?1360245956
Hi there,

I can't thank you enough for all of your thoughs. Ess and Lu, I'm so glad you brought up the sleep study and I will pursue it.  Knowing the reasons can vary, least like you say something will be documented, etc.

Missy, Tam, Wadeweather, HVAC - yea, seems there is always something that's getting in the way of relaxing, the durn stiff neck, a med or something, or our past yrs, and yrs of getting up w/the kids.  We've been knocked out of whack, it beats us up, and we still don't sleep!

Fluff/Kath!!!!!!! YOu know,it tOOk me acouple reads to get that one LOL!!!!!!!!!!!!  Thinking you are onto something, or I need to ha/ha...

My dear Doni - I'm feeling your prayers, and maybe tonight will be all of ours who need some much needed rest.

Thank you all so very, very much.  Can always count on you!
(((hugs)))
Shell
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147426_tn?1317269232
My reading has pointed out that MS can affect sleep primarily, just as it can affect all other brain functions.  Remember nerves can be dulled or they can send gobs of abnormal signals.  Sleep is very complex and a lesion here or there can wreak havoc.

Similar to the insomnia seen in depression, insomnia can be due to the disruption of normal neurotransmittors.

Here is a brief article on MS and Sleep, but I'll find others if you need.

http://www.ms-network.com/intl/msnetwork/general/news_and_views/news/news/tcm_4906.jsp

I have a fine 2 x 4 that I can use to whack you over the head.  Works for me.

Q
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195469_tn?1388326488
I went to your link and read the article.  The last sentence in the article stated:

"Fatigue does not correlate with levels of neurological disability or MRI abnormalities, but is associated with depression. Underlying mechanisms remain unknown, but psychosocial factors may play an important role."

So my question....is the fatigue and sleep problems caused by MS or depression?

This article left me a bit confused.  We know that depression is high in those with MS (or for that matter in most chronic medical conditions)  and I wager to say, those even going through "limboland;." but I think that depression is a very small component of the day time fatigue and the trouble of getting to sleep at night.

I think it has do with the "haywire" going on in our brains, most probably caused by lesions and the havoc they create.  What is your opinion?

Oh, I've tried that 2 x 4...it didn't put me to sleep, it gave me on heck of a headache...

I can report that no matter how fatigued I am, it does NOT seem relieved by sleep.  I could crawl right back into bed, after sleeping for 8-9 hours.  Mostly within an hour of wakening in the morning.

Heather
A "Quizzle Fan Club Member"  You too, Shell.  Well, ALL of our Community's leader's.  I actually think it's time we throw you all a "CO-CL" party for all your hard work day in and day out....Thanks to all of you and Big Forum hugs...


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Hi Shell

I am so sorry that you can't sleep. That has been a major issue for me for years. I use Ambien too but also Xanax which you said you can't use, bummer :(

Even with those I have trouble and have had enough sleepless nights in a row to finally snap twice! The first time I was having a flare but didn't know it until they did an MRI. I told hubby I needed to get away from the daily responsibilities and sleep before I went nuts. Hopped in the car and drove, cried etc and checked in a hotel armed with sleep meds and a sleep mask. I did sleep a bit but it was probably from all of the tears,lol.

The second time was this spring after an ON flare. I went to my mother's for 2 nights and cried again. I missed my hubby, dogs,cat & home so I came back and just gave up on trying to sleep and tried to just relax.

Sleep deprivation was used for years as a form of torture in the military so if anyone tells you if you are tired enough then you will sleep (that's what my husband used to say), I give you permission to smack them, ha ha.

Hugs,
Erin :)
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147426_tn?1317269232
I thought that line might cause confusion.  I hope I can phrase this clearly because it is hard.  When the study says that insomnia is associated with depression, they aren't saying that insomnia is "caused by depression."  Multiple studies have looked at fatigue, sleep problems and such and tried to see if they "correlate" with any of the markers in MS such as physical disability, cognitive difficulties, mood disorders and such.  The only thing that they find a statistical correlation with is depression.

This does not say that all people with insomnia have depression or vice versa.  But, it does give a clue into what possibly is giving rise to the sleep/fatigue problems.  The same kind of neurotransmitter problems that cause depression may cause the insomnia or sleep disruption.

That is why I mentioned possibly using an anti-depressant that has drowsiness as a side effect.  Similar to using an AD for its potential in relieving pain.

Does that make more sense?

Quix (thanks for the kudos, but they belong far more to my colleagues right now)
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I agree that a sleep study might be very useful here.  Quix
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755322_tn?1330272714
Shel,

Have you tried the alternatives like L-tryptophan or 5-HTP? or a combo with hops, Valerian and other herbals? When I wasn't sleeping, ambien, tramadol, lunesta,  nothing helped. But a belt of L-tryptophan put me asleep beautifully.

Also, (and please don't hit me) since I have been taking LDN, I sleep like a baby, every night. Getting good sleep sure helps mood and pain and general outlook on life.

Just a few thoughts "from the other side." I truly hope you find your answer and drift off into dreamland soon. :)

Jessica
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Avatar_m_tn
I've tried those alternatives, but nothing helped much. the tossing and turning, difficulty to get comfortable, and sometimes those mild type spinal tremors, or whatever we call them invade my sleep time. i have to have a loud fan on due to the ear ringing and that helps.

i finally had to go and get some meds to take once in awhile for sleep, after years of not taking meds and, suffering by not taking them, i now take them and they help, especially with sleep. i wouldn't mind trying ambien but never asked the doctor about it.

one other really frustrating thing is that somedays i almost passout from fatigue, at least that is the feeling/sensation, but when i get to a place to lay down, i can't sleep naturally. i take a med or two then.

i have cracked(LOL) before or at least i should say i've won the Mr Irritable award. LOL i wonder how many people i have pushed away due to the not-normal irritability? some days i just want to hide out due to the not-normal irritability. those days i try not to use the phone cause i'll snap someone's head off for no good reason!  luckily a few of my guy buddies know my situation and look past it and tell me to try to get some sleep and chill out.

when i can swim, i have a better tendency that night to sleep better...not always but a better chance. i have a bad neck section that needs attention according to the MRIs
and turning my head in the water results in more problems than benefits at times. my neuro wants the MS thing worked out before sending me to a neurosurgeon -- beats me if that is good logic or not, i have my doubts.

anyways Ms. Shell, i too have the sleep, fatigue issues and residuals that come with it. has been ongoing for years....

here's to you and you getting some quality sleep and some happy days ...








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867582_tn?1311630997
Much that I have read about MS indicates that MSers typically do have sleep issues involving both, diminished quality and quantity of sleep.  In other words, sleep issues are to be expected in people with MS.

I had a sleep study done:  Now I'm on CPAP (for obstructive sleep apnea) which helped me for about a year and a half, but now I'm starting to have some bad nights again.  I have an adjustable bed and sleep best in a sitting position.

My sleep doctor emphasized that preparation for sleep should begin about two hours before bedtime.  You should dim the lights then, don't go out in any sunlight, and generally start chilling out.  Too many people go from action to sleep time - thinking they can just turn off all the stimulation and go to sleep immediately.  It usually won't work that way.  Don't watch a stimulating TV show or read a chapter book that leaves you hanging in suspense.

Also my sleep MD emphasized that there should not be any recreational items such as a computer or a TV in your bedroom.  Your bedroom should ONLY be associated with sleep.  No treadmills, no exercise bikes, no desk piled high with bills should be in your bedroom.  Only your bed and related furniture so your body associates that room with sleep!!  Also, you should have total darkness when going to sleep - either by blackout drapes or some kind of comfortable sleep mask.  

You should go to bed and get up at essentially the same times every day.

Hope the above helps you.  I agree a sleep study could be good for you - with sleep apnea, no matter how many hours you sleep, you almost never feel rested.

WAF
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