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-   -   Anyone with Sleep Irregularity Challenges? (https://www.neurotalk.org/multiple-sclerosis/123264-sleep-irregularity-challenges.html)

NeuroNixed Craig 05-30-2010 12:53 AM

Anyone with Sleep Irregularity Challenges?
 
Wow! So many people on the board with so many different and debilitating challenges. I'm sorry to say this out loud, but reading the forum actually makes me feel lucky. THAT is NOT a good thing either!

Since my stroke 12/08, I now have Irregular Sleep-Wake Rhythm Disorder leading to chronic sleep deprivation. My circadian rhythm has no routine in any 24hr period. Plus I deal with RLS, sleep apnea, and using a CPAP machine. From the stroke I have Weakened Respiratory Response Syndrome meaning, sleep aids are very risky in that I may not wake up.

More recently I've been dealing with increased pain and discomfort due to the involuntary body movements and resulting spasms. Thus, I need the Klonopin to slow the movements so my body can rest and recover. The meds are having little positive effect now. Don't you find it funny the med's main purpose drops off but the severe side effects never do?

Are any of you dealing with sleep challenges with your symptoms? Anything like this and if so, how are you treating it? I'm always interested in how other people are handling their unique challenges with the hopes of learning something new.

Just some ramblings late tonight trying to keep my mind off the pain. Wishing all of you a happy and productive Memorial Day. Thank a Vet and make a difference. You will be amazed in who the difference occurs.

Thanks for reading,

Erin524 05-30-2010 01:50 AM

I have Insomnia From Hell.

Some nights I dont fall asleep till 4am, sometimes it's 7am before I fall asleep.

Sometimes I fall asleep insanely early (usually after having no sleep for a few days.

I've had insomnia problems since about 1995 or 1996....I think the MS was "woken up" around that time (had mono in early 1996)

lefthanded 05-30-2010 01:51 AM

I have both Crohn's and MS and between them sleep is difficult at best. I have even found myself dreading bedtime. I developed Crohn's after the removal of my colon and a pull-through procedure known as a j-pouch, and with it I suffer night-time incontinence due to spasms. This keeps me on a sleep cycle no better than 2-2 1/2 hours at best. During a flare I might wake every 45-60-90 minutes or so. On top of that my hands go numb quite often, and my feet have chosen night time to be one of the more aggravating times, with shock-like shooting pains and severe spasms/cramping. The longest consecutive sleep time I have had in the last 8 years is about 4 hours.

I take 3mg melatonin about an hour before bedtime now, and I have found it helps me go back to sleep easier, even though it does nothing to help me stay asleep. However, like, you, staying asleep can carry some unpleasant consequences . . . so using melatonin has been a blessing for me.

Kitty 05-30-2010 06:49 AM

I'm such a light sleeper that I wake up every 2-3 hours. But, I know I can nap during the day if I feel the need so I just don't fret about it. If I happen to wake up during the night and can't go right back to sleep I get up for a while till I get sleepy again. I don't know why I'm such a bad sleeper.......if I still worked it would be a major problem. But, I just nap alot!

Dejibo 05-30-2010 07:38 AM

Sleep is elusive in my home. I have tried them all, from Ambien, to Zanaflex. When I take Reglan, I got RLS, and found of all things, Benedryl to be most helpful to control that side effect. I have tried meditation, yoga, more exercise, less exercise, meds, naturopathic meds, homeopathic meds, chinese meds, accupuncture, accupressure, and so on. There are some nights, I simply give up.

I too am tired of being so tired. This is not an every night thing for me, and I dont have apnea related issues, nor RLS unless you give me reglan. My brain simply will not shut off. I am tired, but its like I just cant reach that light switch that shuts off the brain.

Somedays I tell myself that I will take what I can get, and at least I am resting. Even if not sleeping, at least I can rest.

Feel better. :hug:

SallyC 05-30-2010 12:31 PM

Ah "Sleep, perchance to dream":) Sorry, Craig, No help here. I sleep like Kitty said.

What I've done, to help, is acclimate myself to it, instead of fighting it. I sleep when I sleep and don't when I don't.:rolleyes::D I think what I do, now, is a series of 4 hour naps.

I hope you find a way to find relief from this common debachle. :hug:

Kitty 05-30-2010 01:29 PM

Quote:

Originally Posted by SallyC (Post 659662)
I sleep when I sleep and don't when I don't.:rolleyes::D I think what I do, now, is a series of 4 hour naps.


Yep, Sally.....that's exactly what I do. Apparently I don't require alot of sleep because I don't feel unrested.

Erin524 05-30-2010 02:55 PM

I've got a new sleep problem that's new this week.

I keep getting woken up by migraines. This morning is about the fifth time this week I've been woken up by a headache. Usually the headache goes away after I take a Midrin (migraine med) and sleep another hour or two.

So far, I've had two Midrins, and slept another two hours....the headache has lessened, but not gone away. I'm really really tired now. My dad took my mom shopping, and usually I'd want to go. I just dont think my brain would stop hurting if I'd gone, and with the stupid flare that I'm probably still in, I dont think I'd have had the physical energy to do the amount of walking I'd need to do to go shopping.

I want to go back to sleep, but I dont think the headache will let me.

NeuroNixed Craig 05-30-2010 05:12 PM

I agree as to how to "deal" with this challenge. My wife and I have adopted the motto, "Just go with the flow!" So I sleep when sleepy and wake when awake, regardless of what the clock may say. It really freaks my friends out to get emails from me showing 2:30 AM in the morning.

On the positive side, it make getting to 6:30 AM Monday morning Men's Bible Study pretty easy for me. <BG>

Kitty 05-30-2010 05:27 PM

:D That's the best way I've found to deal with it, too. Just go with the flow.

My son has a phone that alerts him whenever he gets an email in his personal or work mailbox. I sent him something one night around 2 AM and he called me to see if I was okay! :o Scared the daylights out of me to have the phone ring at that hour :eek: but after I restarted my heart I told him I wouldn't be sending him anymore late-night email. :rolleyes:


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