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Old 01-19-2011, 10:36 AM #1
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Default 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!!
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Old 01-19-2011, 11:31 AM #2
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Who I'm sleeping with is kinda personal, isn't it?

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 ...
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Old 01-19-2011, 11:38 AM #3
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Have you tried taking a melatonin supplement? They are available OTC. Worth a try.

Ativan and clonazepam helped me as well.
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Old 01-19-2011, 03:05 PM #4
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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.
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Old 01-19-2011, 03:26 PM #5
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Quote:
Originally Posted by PolarExpress View Post
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 ...
Me, too! Lately it's been 3 hours at the most for me.

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.
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Old 01-19-2011, 07:30 PM #6
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Me, too! Lately it's been 3 hours at the most for me.

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.. That's me exactly...and now Polar is a Sista member

This kind of thing sucks for those still on a work schedule though!!
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Old 01-19-2011, 11:07 PM #7
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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.
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Old 01-20-2011, 01:35 AM #8
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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!
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Old 01-20-2011, 06:49 AM #9
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Default 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??
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Old 01-20-2011, 11:52 AM #10
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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. 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
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