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Multiple Sclerosis Community
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198419 tn?1360245956

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!
20 Responses
Avatar universal
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
572651 tn?1531002957
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
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!
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
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

Avatar universal
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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