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,

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)

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.

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!

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:

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:

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

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.

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>

: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:

Go With The Flow...I like that, Craig..:)

It seem that I have to go with the flow, with a lot of things in my life, these days. :D

Saturday I really pushed it, went out with my wife and bought a Lazy Boy recliner. For us it's a major investment because, as you all well know, I spend so much time in it so it must be comfortable and last a long time. I pushed it all right!

Came home exhausted, went to bed and slept to 4:30 PM. Back to bed at 8:00 PM, up at 12-midnight, bed again at 2:00 AM and back up at 4:45 AM. Then we went out for breakfast, home and back in bed by 11:00 AM, up at 4:00 PM, took a shower (a major energy drainer), suffered and back in bed at 9:00 PM.

Here I am "AGAIN" at 3:15 AM up and feeling like crap. I even took two whole Klonopin pills and still only got six hours out of it. Well, seeing my PCP on Thursday as sleep doctor recommended Ambien CR at night rather than the Klonopin so we will see what happens.

Thanks for sharing your experiences because now I don't feel like I'm the only one. Between the chronic sleep deprivation and dealing with the pain and other symptoms, my life right now is like and expensive Kirby vacuum cleaner and sucks with "GREAT" intensity.

I almost got up at 2 to come in the LR and start to do computer things. I am exhausted! I cant sleep. I miss my kitty that I just put to sleep. She used to sleep with me, and now I am so sad! I know this will pass, but the sleepless nights are making me crazy! I just kept nodding off into ten minute naps. Thats NOT rest!

Maybe I need a lazy girl recliner. :cool:

Another sleep deprived one...
I havr RLS too and take Requip XL... It helps so much and makes me sleepy. Not for long though.
I am awakened during the night with leg pain from spasms. I take some zanaflex right before bed but it only lasts for 3-4 hrs. I take a other one when I am awakened but it takes a whe to work. I also use a CPAP.
I have been suffering from extreme fatigue as well, so sleeping throughout the day doesn't help for the night.
Just another fun thing to deal with...

OK Guys! Here's my latest update. I saw my PCP on Thursday afternoon. A very hard appointment for both of us because he is a very caring compassionate doctor who is practicing medicine because he likes helping people. I could feel the compassion and his frustration of not being able to really help me due to my neurological disease. He did Rx Ambien CR and a strong narcotic with acetaminophen (sp) for my chronic and increasing pain. He was very clear, even though there is nothing medical science can do for me, he would continue to do what he can to keep me comfortable and treat me as a whole person. Funny, because we talked about doing labs an blood work. I started to laugh and asked him if he was concerned about premature death and he cracked up and said "yes, not that important any more is it? We'll just do it whenever you'd like to see an update." He walked me out to the car and helped me load my power scooter in the trunk, then gave me a big hug. Oh, BTW, he gave me his home telephone and personal cell numbers and his home email address making it very clear to call him anytime. I am so blessed with this PCP.

Well, the point of all this is I took the meds last night as Rx'd. I got really sleepy within about 45 minutes and went to bed looking forward to a full 7 to 8 hours sleep. "NOT!" I was wide awake and up listening to an audio CD book after only 3 1/2 hours. The sheet says it may take a couple of days use to get passed this point. We'll see. I'm not one who is ever optimistic about meds and never have believed in nor had a placebo effect. At this point I would love to even have a placebo effect.

So here I am, totally exhausted, 3 1/2 hours sleep and my major goal for the day is to shave and take a shower. Shaving with involuntary movements is always a challenge and the energy expended to simply take a shower is devastating. As our new post diagnosis family motto goes, "just go with the flow." So that's what I will continue to do.

OH! Let me warn you, since the stroke, not only do I tend to talk too much with details, I seem to run off at the keys too. So I apologize for the long postings. But, you know what? If you have a problem with this, you have the right to get counseling. LOL!

Hey Craig...I love reading your posts...they're so conversational, I feel like I'm listening to you! Don't worry about the length!

I tried Ambien and it did nothing for me! My neuro was considering giving me Clonipan, but I don't want to go on any drugs...I can sleep, just not through the night. I make up for it in the morning (and sometimes the afternoon:rolleyes:).

It sounds as if you've found a very caring doctor...bless his soul. I'm glad for you.

Take care of yourself, and keep us posted about how you're doing and what the docs are helping you with...:hug:

Not being able to sleep at night, and wanting to pass out in the afternoon after a walk around the house was really the most bastardly of my symps. It sucks, but meds are working for that.

Hey Eric, I have a new found respect for you from reading the bike ride post.

I can take Klonopin and Hydrocodone, sleep hard for maybe 2 to 3 hours, up watching TV for 2 to 3 hours, hit with waves of exhaustion and back to bed for a couple of hours. That's the closest I come to a sleep/wake routine.

I can feel pretty good but only for a couple of hours, if the previous circumstances are right. I can feel pretty good, go to dinner at TGI Fridays and have to seriously crash from total exhaustion once we get home.

Bad news guys! Evidently I've progressed to the point my PCP feels I've exceeded his area of quality treatment. He called my wife at work last Monday morning at 7:45 AM and discussed sending me to a pain management clinic. He feels I may be able to have fewer meds (15 Rx'd now) and a higher comfort level with their help. So, I'm in the process having records faxed, pre-appoint evals by the doctors to determine if there is any further treatment they may provide, short of knocking me out and/or stupor all the time.

We will see. Many times the pain is so bad it brings tears to my eyes, but what can you do but deal with it?

I have found that medicated sleep isnt great sleep. natural, I am tired, let me lay down sleep is what really recharges my batteries. The less meds I take, the better I feel. Pain management will do PT and OT and relaxation and yoga and other stuff to help suppliment your routine and hopefully you can get more of what your body is supposed to do naturally.

If you cant walk, they sell those bike rider things that you can do while on the couch. Lift cans of soup and get those muscles burning. do streches or chair exercises. stretching out those muscles really helps cue them into the mode of releasing the toxins they hold onto. Lactic acid can cause all sorts of cramps.

I am hoping to find a better rhythmn than I have currently myself. I am just hoping to do it with less meds. :cool: