Sleeping With MS... How do you do it?
 

I cannot sleep. I am so tired. Then I am fatigued all day and dragging with weights holding me down, then I try to sleep and it all starts over again.

You know this feeling. I am sure you do. it seems to be a common problem.
I was on Ambien, which worked great...then it stopped working. We tried Ambien CR same effect. THen we upped the Ambien to 10 MG. IT was amazing, but I only slept for about 4 hours. Once it wore off, sleep was gone.

Now we are trying Lunesta. Funny thing about this. It doesn't work! I took it, layed there for about an hour, finally fell asleep and woke up 5 times that I know of last night because those were the times that I looked at the clock.

Now you would think with the anti depressants and the Morphine 3 x a day that I would sleep like a baby. We even tried switching me back to elavil which made me sleep for a while and stopped working.

Should I just give up on sleep? Is there a magic pill that my doctors are keeping from me? HELP!!

Who I'm sleeping with is kinda personal, isn't it? :D

Actually, I sleep for just a couple hours at a time. When the ibuprofin starts to wear off, I'm up. Since it's my choice not to take narcotics, legal or otherwise, I end up taking a series of 2 hour naps. I'm just so much fun these days :rolleyes:...

Have you tried taking a melatonin supplement? They are available OTC. Worth a try.

Ativan and clonazepam helped me as well.

I have found meditation, or prayer, or yoga really help clear the clutter out of my head so that I am not chewing on stuff half the night. I take my pills and know that I have a window period in order for them to work. Lets say I take my muscle relaxer and anti anxiety pill at 9 pm. I know by 10 pm I will be nice and comfy with it, and sometimes that can trigger my brain to say "hey! we feel better! lets get stuff done, or my mind is no longer cluttered with painful thoughts so it frees up space to think, plan, organize or try to make mental notes. I have had to really work on stopping this flow when it happens, and yoga and meditation are helpful tricks. If I take my pills at 9 I MUST turn off the TV, the radio, put down the book, shut off the phone, and tell all others NO! stay out of my room if I have any hope of sleep. If I am still awake and trying at 11, its over. I have lost all ground.

You are in a stressful period right now, and need a routine. A schedule that is kind to your stress level. I find I cannot meditate in stressful times for more than a half hour, so I do it a couple times a day, instead of one big sitting. Same for yoga. I cant do 2 hours, so I do a half hour. Bite sized goals get me over the finish line.

Best techinique was given to me by another nurse who helps children. When you crawl into bed, meditate, let it all go. TELL YOURSELF to let it go. Give yourself permission to release it. Tell your troubles that you will be back on the clock at 8am, but till then, you are off duty. Then start at your feet. Tell your toes to relax. then your ankles, then your shins, and knees. Work your way to your head. While doing this practice "sleep breathing" have you noticed that when you are dropping off you take deep rythmic breaths? fake it! deep breath in, and slowly release it while telling your knees, hips and belly to relax. It may not knock you out, but it does help give your body the idea and allow the suggestion to start to work.

Pills are AWESOME and I would be lost without them, but I have to help them get me where I am going. I find if I cant drop off and actually sleep I try to rest. Many will tell you to get out of bed and do something else till sleepy, but that could be days for me. I find rest while not optimal does help some.

Write me if you want more details.

Me, too! Lately it's been 3 hours at the most for me. :rolleyes:

I sleep when I sleep. Whether it's during the day or at night. The more I think about it and fret about it the less I'll sleep. I don't take anything. If I get tired enough I fall asleep. I do sleep the best, though, early in the morning....say from 6 AM - 9 or 10 AM.

My evil twin did it again..:D That's me exactly...and now Polar is a Sista member:hug:

This kind of thing sucks for those still on a work schedule though!!:mad:

When I approached my neuro about it she ordered a sleep study and found out I have sleep apnea. I use a CPAP and feel much better.

I'm glad the CPAP works for you, Doydie! I know sleep apnea isn't my problem. It's pain that wakes me up. I take 600 mgs of ibuprofin just before I go to bed, and I'm good for the first 3 or so hours. After that, it's every 2 hours or so. My legs hurt all day, too, so my daytime naps are about the same length.

Ain't it fun!?! I have Provigil and Adderal for daytime use, but I don't take either every day. Days I don't take 'em, I'm more zombie than human. Nice to know I have Sista nappers, though! :cool:

Sista Nappers!
 

Well, if we could sing we'd have a group!! Gotta great name!

Sally's right....if I still worked this "napping" schedule I have now would definitely not work.

Now.......what can I do to remember to turn the ringer on the phone back ON when I get up??

I use a CPAP and it helps me by not allowing me to awaken from the snoring. I use earplugs to block DH's snoring:rolleyes:. But sometimes when I lie down I wake up...I sometimes use the gratitude list. I go over the day and tell myself 5 things that I am grateful for...it puts me in a more positive frame of mind. Doing a body scan to loosen all the muscle groups helps me as well.
But sometimes I just can't sleep. And DH loves me so much he hates me to leave the bed (ain't that sweet?)...so I lie there and just breathe...

Narcotics don't help me. And almost every night I am awakened by spasticity. My neuro told me to set the alarm for an hour before I am usually awakened by spasms and take a zanaflex, but I don't want to wake myself up if I'm sleeping well. So I just go with the flow. If pain wakes me up I take my med and wait for it to work.

Try taking benadryl instead of the narcotics. It sometimes helps me...good luck:hug:

Sleep deprivation must be a common problem with us MSers. All my docs ask the same question first: how am I sleeping.

I agree, meditation (or prayer, etc.) can really help me fall asleep, but the drugs are the only thing that seems able to keep me asleep.

I didn't want to add more drugs either. My mind is already so addled there are days I wonder what I did at work. I work much more slowly than I used to, and I don't cope well with the rapid changes throughout the day.

I finally went on amyltriptaline, just a low dose, and it helped a lot. I felt fairly well rested, and felt I was doing better at work. Six months later, and I'm already waking up throughout the night.

I'm getting really down about all this. That and turning 50 ---- Argh! :eek:

It ain't easy, this getting older. (John Mellencamp)

Seroquel XR allows me to get a good night's sleep. Seroquel XR is prescribed with those Bipolar or with depression.

Seroquel XR ended the changes that occurred over the years. It gave me courage to do the tasks before me. And I thought the changes I went through over time were because of the MS.

I cannot speak highly enough about this medication. I sleep and feel the way I did before MS. I will be 50 this year.

EDITED to add that I used to take 3mg (built up over decades of use) of Klonopin nightly to help me sleep. Now, all I take is Seroquel XR and I get a good night's rest. I take 'no' Klonopin or any type of similar drug. Seroquel XR is 'added' to your current antidepressant.

i have a sleep disorder that was caught on a sleep study. they could also tell i had chronic pain syndrome from my brain waves. i also had sleep apnea.

maybe seeing a sleep dr and having a sleep study would help pin down what the trouble is.

maybe you you're becoming tolerant to your meds. i take trazodone 200mg HS.
it's an AD but makes you sleepy. that helps me get to sleep fast. i don't usually stay asleep. i'm on cpap too but i don't feel it makes a difference.

my sleep dr says do NOTHING that is stimulating if you wake up. try to stay in the dark. don't watch tv, look at the clock, read or use the computer. i try to turn the lights off an hr before bed. and, try to work out a bedtime routine.
maybe someone could read you a bedtime story. :p

let us know how you make out.

Here is the problem.... I cannot shut my brain off.
Yes, I have been super stressed lately (and that is putting it mildly). But the Ambien stopped working before that all started. I have decided to become more proactive in my life for my own sanity. Which leaves no time to nap. And when I do nap, it turns into an all day thing and I awake even more groggy than when I fell asleep. So i have tried cutting out naps unless absolutely unstopable.

I lay in bed at night and cannot shut off the brain. And I am not only pondering the problems of life, thinking of things that need to be done the next day or week, but I am laying there thinking of the stupidist things. For example, if a dolphin jumps out of the water as a bolt of lightning hits, would it kill him?

I am trying to get used tot he new meds, but they do not seem to be working. The added antidepressants are not helping. The ambien mixed with everything else would knock me out cold... but I would not dream, I would never hit that relaxation point and then the meds would wear off and I would wake up.

Pain is also a big factor. I cannot stay in one spot all night because it hurts not to move. This does not help. But the fact is, i am already taking Morphine 3 times a day (including before bed) and I do ot want to increase the dosage or add any more to it because I need to function throughout the day.

It just stinks! Before MS, I had a waterbed, it was warm. The room was freezing, I had the bed to myself. I would wrap around my pillow, be gone in a matter of minutes and wake up full of energy. I would sleep for 8-10 hours at a time when I could and on nights when I was getting less sleep, it didn't hit me so bad. Now it seems like one bad night and I pay for it for the next week. The family is not quite understanding this.

I just want to be able to keep up.

Anyone wakened by spasm or jerking of muscles might benefit from more magnesium. I need about 800-1000 mg per 24 hour period. This was suggested by a neuro 30 years ago when Zanaflex was impossible for me to take. I really believe many are magnesium deficient. If you try it, remember that magnesium is can encourage diarrhea. The neuro told me to find the one which caused the least diarrhea. A good side effect of taking magnesium is that I rarely have constipation now, whereas it was a constant companion in the old days before magnesium. I take an equal amount of calcium but not at the same time as the mag (I take the cal between meals). And D3 of course. If I forget any part of this routine I will find myself jerking from the hip, clear down the leg,
in bed. This does interfere with sleep. I usually sleep well. Only lately has it been a problem because I am having neuropathy in my feet from taking Interferon. Oh that I'd stayed with just my first two diseases, and not the third one I'm taking INF for.

Leggzalot, I think the way Deoji (spelling?) turns off her mind at bedtime is helpful. I do this too. I consciously say "I'm gone, God protect me during the night from all harm." and will myself to just put aside the daytime. I think what can badly interfere with this is some drugs. You are taking a lot of drugs. Can you cut out some? I know you must take some because of your pain. Me too, right now I'm in awful pain part of the time (neuropathy) so I have to take pain pills, but I would not be found taking Ambien, Lunesta, or any of those night time sleep aids. Ever. They would do to me exactly what has been described here. Sleep a short time, wake up, and never go back to sleep. So I consciously turn off the day. Deoji calls it "meditation". For me it's prayer, but a short prayer, because I don't at that time (bedtime) want to go into a long discussion with God, thereby keeping the mind active. The mind needs to go somewhere else at this time, not to indulge in thinking and debating of any kind. And I consciously turn over protection of me to God. I do not intend to BE THERE at all during the night. I'm gone!

I don't dream much, and when I do they are not pleasant dreams, they are anxiety and fear dreams. I would so like to get over that. I'm afraid the Interferon I'm taking is
causing this anxiety. I may have to quit it.

Drugs are poison. They must be used very selectively. It's so hard to do that when we have real illnesses, as doctors depend mostly on drugs.

I wish you a good night's sleep, every night.

Mariel

I really sympathize with all next to pain this really is draining..I really feel so much better if I don't sleep.I have the energy to tackle some jobs around the house then I'm tired and enjoy some sleep.Then I am so weak and have no energy to do much.Does anyone here feel better with little or no sleep..My family really thinks this is strange I do too..

must be a mental suggestion because since I saw this thread, I am hyper vigilant and now am having trouble staying asleep. I keep waking up with family drama playing in my head. *sigh*

Sorry Dej.

But get this.... Do you know what I did last night after I got home from my date with the man??

Get your dirty mind out of the gutter Sal!

I SLEPT!!!!! Oh I slept for about 6 hours and I only woke up twice. It was wonderful! I think I figured out the other problem and it is not the meds. It was the blanket! My sheets are amazingly cold when you get in the bed. I love it! But then I get warm and I keep moving to different spots.

When i woke up the night before last, my skin was crawling from the heat and i threw the blanket off of me.

What I needed was my really old goose down comforter. It is missing most of its feathers and it stays cold. But it also keeps you warm...but not too warm. And I can bunch it up around me and relieve pressure points in my back. Oh, it was amazing to sleep again. I woke up feeling good (except for the usual aches and pains).

I did have one other question, this has happened for the last 3 nights. Does anyone else get spasms in their rear when you sleep? The only way I can describe it is it feels like I got a shot from a really big needle. Its there when I wake up and it lasts about 2 hours and then slowly fades away. Anyone know what that is?

i keep waking up very warm. I am cold when I lay down, but even under just a sheet I wake up feeling like have become my own furnace. I find I do this esp when stressed. I must get back to meditation.

Yes, sometimes, I do my best work late at night!!:)

What do you do at night if you can't move your legs anymore?

My H has PPMS and has trouble moving his legs at night. He complains that this feet ( the heel part that touches the mattress) hurt. Should I be moving his legs around at night? Is he at risk for blood clots? He wears socka to bed and sometimes puts a pillow under his feet as well.

Not sure what else to do.

Wish i had some answers for you on that one. :hug: If it seems to hurt less with the pillow, I would say go with it. I don't know anything about blood clots, I do know after my mom had surgery, they had this machine that hooked to her legs and kind of massaged them every few minutes. I have no idea how much these machines cost. I assume they are not cheap.

I had tried Ambien and Lunesta. My problem is that my back muscles get WAY stiff if I lay still for long; it doesn't hurt exactly, but it keeps me from sleeping. Curse you, spasticity!

My doctor gave me a scrip for 50 mg Xanax and it's made all of the difference in the world for me. One Mother X and two Baclofen at bedtime and I am set.

Pete

I used to take Ambien but, then I retired and my meds cost way too much. Now I own stock in Nyquil company. Lots cheaper and I sleep just as well.

I take Hydro/Acetam (Vicodin) but have stopped night time pain, I think, with sheepskin on my wheelchair, small down lap blanket on my back against back of chair. We'll see tonight. Hydro/Acetam makes me poop less regularly. Want to try Bendryl tonight (will ask Neuro what he thinks) to help me fall asleep.

They sell sheep skin booties that he can put on his feet so they stay wrapped up and less chance of that pressure being on his heels. Perhaps this would help him feel less pain, and therefore stay asleep? Is there a way to prop his feet on pillows so they are not dug into the mattress?

Nancymarie -- Sheepskin was what I was going to suggest. Also possibly memory foam, or a pillow under his knees so his heels aren't in that position. Have you talked with his doctor about that problem?

My new trick is getting up to use the restroom every hour on the hour. :rolleyes: Takes me forever to get back to sleep.....and by the time I do I have to go again! :mad:

Me too...:mad: