Up at 7 AM, but not quite; then it's noon?!?!

[gemit2000]

Coincidentally with my weekly exercise reduced from 7 days lite, 3 days vigorous to 5 days lite & 0-1 vigorous, my sleep habits have noticeably changed this month. Used to get up at 7, get up to my feet 7:05, & pretty much stay vertical after that. Now I've been laying back down around by 7:10 & next thing I know it's the afternoon.

My sleep habits have been both strange & strained for years now. Sleeping by midnight or 1 then going through a pattern of down for 1 1/2 hrs & up for a few minutes continuing till around daybreak. Probably it's been like this for a decade now, surviving on this 5-6 hrs of interrupted sleep. Thankfully during this time my energy has remained somewhat similar to what it had been during rest of my adult life - not terrific, but good enough & normal for me; it's even remained fairly constant since CLL Dx in 2012. Now suddenly with this xtra 5 hrs. of uninterrupted sleep, sleep time has almost doubled (ZZZzzz doubling time in < 1 mnth?).

Anybody seen anything similar? Any CLL related possibilities ( latest labs did have a relatively high % ALC increase from 55 to 70, tho other #s one checks were fairly normal)? Was going to discuss possibility of sleep apnea w/ PCP at next appt thinking it might at least be contributing to the interrupted sleep (till now just blamed it on UtU... Urge to Urinate). That thought has been on my mind since Thanksgiving when approx 50% of the weekend seemed to be focused on CPAP-related issues (now there's some scintillating dinnertime conversation).

I do believe the obvious thing is to try restarting my vigourous exercise regimen + forcing myself in the AM to attain a horizontal postition for the duration.. But other than that..... ?

[Cammie]

Gemit2000

Natural sleep patterns mean everyone has periods of wake ness, light sleep and R.E.M. plus deep sleep.

Many don’t notice the awakened state as they are usually short periods.

I believe our bodies , being such wonderful things, lead us naturally to obtain the type of sleep we require for rejuvenate. Illness or other influences can,of course interfere with our body clock and cll is no different.

As we get older sleep patterns change .

I try to get the full recommended 8 hours per night and according to my Fitbit I am fortunate to be above average sleeper for my age.

Very rarely do I drop below the average and when exercising my deep sleep pattern is in excess of the benchmark.

With cll and particularly when in treatment my patterns changed and I found myself needing a nap in the afternoon many days.

Currently all is well and I sleep well and long may it continue.

My thoughts are if you need it take the nap or sleep in.

Your natural rhythm is telling you what you require.

[Spacee]

It could be that your circadian rhythm is out of whack. Mine is though I do not have CLL (hubby does). I sleep from about midnight-noon. Not fun. But it is nice to feel rested. But it is out of step with most of the world. There are groups on FaceBook with this.

[gemit2000 in reply to Spacee]

thank you... perhaps I'll visit FB. I happen not to like sleeping to noon. I feel I lost the day, since I usually take 2 hours to get going & then say, "it's #$*! 2 o'clock, I just lost the day!" & this gets me a little depressed leading to doing a lot of nothing & thus begins a low energy, low activity, low accomplishment cycle. This month has not worked for me.

[Spacee in reply to gemit2000]

Yes, if I get out the door by 2pm I know I am on track. Do errands, gym, home by 4-5pm for a nap. Hubby has taken up cooking because he finds it relaxing. Does the dishes too a lot.

When I was younger, I became ill. Age 37. There was a product that I kept by my bed with a glass of water. A small supplement but within 30 minutes of taking it, I was awake. But it doesn’t help the over 60 crowd.

The product is NADA. And I got mine from the store at the site for CFS/ME. Prohealth.com. So wished it still worked.

Linda

[gemit2000 in reply to Spacee]

Hey, noticed you're #2 on my People Near Me list, 34 miles away. I'm guessing then that Spacee could mean you're close to the Space Coast. But no....I'm in Orange close to Osceola & places like Cape Canaveral, Titusville, & Cocoa are over 50 miles so maybe your screen name is not about geography and more about the effects of not getting enough sleep.

[Spacee in reply to gemit2000]

You are a good sleuth! Spacee is a name I have used for 20 years on a board for Chronic Fatigue Syndrome. So, I continued it. We are in Polk County (Lake Wales) near Legoland. Center of the state. We have lived in Orange and Cocoa, Orlando, Tampa, Lakeland and now here for 25 years.

What doctor do you use? Moffitt seems to be filled to the brim with all the older ppl moving to Florida. Hubby sees Dr. Chavez there.

[Redlion]

I think you make a good point. I have gone from being a good sleeper to a bad sleeper over the last 8 years, coincidentally the same time since my CLL diagnosis. All my sleep is now interrupted, mostly due to the effects of enlarged prostate (UtU) and acid reflux. I set my alarm for 7.30am but am seldom up until after 8 and it takes a good hour or more before I feel ready to do something. At 7.30am I feel more tired than when I went to bed. During the day I intersperse periods of activity with sit down coffee breaks and by mid afternoon the coffee breaks also become snoozes. The tiredness, fatigue and bad sleep have all ramped up alongside the disease progression, particularly in the last 18 months which has seen my CLL accelerate to the point where I am now about to start 1st line treatment.

[gemit2000 in reply to Redlion]

Boy so many similarities... but I think I'm lagging behind you a bit in the lagging dept. the afternoon coffee gives me enough to make me get up and go and the going makes me less tired.. but by 7 pm, after dinner, I'm done. Been told frontline treatment was likely this year, but that was almost 2 1/2 yrs ago so I'm still a bit away from Tx & far away from the hem/oncologist that gave me that prognosis.

Hope the treatment brings back the energy of your youth or at least by comparison feels that way.

[Lbrinks18]

My husband has always been an early morning riser and as soon as his feet hit the floor he was ready to go energetic in a great mood and getting things done even before eight or nine in the morning. Since his diagnosis in December at stage 4 CLL/SLL, His sleep patterns have changed dramatically. He is in bed still at his normal time in the evenings but it is rare if he is ever up before 8:30 AM. And then it takes him hours to be ready to actually do anything productive. And then after 2 to 3 hours of any type of activity, not strenuous, he is needing rest.

[gemit2000 in reply to Lbrinks18]

At stage 4, probably doing anything productive at all is a blessing. I'm still stage 1 (is there a 1.5?). Has he been told if his first or next treatment is at hand? Seems perhaps killing most of the CLL cells might help him more than anything.

[ladyprescott]

Hi Gemit...My sleep pattern has been out of whack for quite a few years, then I went through some stress last summer and it's gotten worse. I decided to begin reading up on sleep and found that if you go to bed at the same time each night (I chose 9) and try to get up at the same time each day, you can achieve a new sleep pattern habit. I'm trying to get there by 9 sometimes it's 9:30, but I find I do sleep better. Addressing your awake and asleep pattern, see a sleep specialist for a sleep study. I did and now wear a retaining device as they found I snore during sleep and have sleep apnea which isn't a good thing to mess around with. This could be causing you to wake. Hope this gives you something to think about. Not sleeping is awful. From one who knows. Carole

[gemit2000 in reply to ladyprescott]

All great ideas... except the bed by 9 PM part (last time I did that was when I was 9 yrs old & was angry cause I wasn't allowed to stay up to watch "The Flintstones", which was in prime time at that time; argued that if a cartoon that was basically made for children is on at that time, then I being a child should be able to stay up to watch. that didn't work & I must of rebelled).

I do need to make myself get in bed by an earlier hour though. Cause when this pattern occurs I seem to have slippage. I start going to bed midnight, & soon it's 12:30, then 1. This week it was 2 AM & last night 2:30.... BUT got up at 7 with plans to play ball at local fields &

I did it. Good exercise for 2 hours! Then I went shopping, fed the dog, did the dishes and now answering emails & it's currently the time I've been just getting up... plus I feel better. Maybe substituting 2 hrs of vigorous exercise is better for me than 5 extra hrs. of sleep?!? Strange!

[bkoffman CLL CURE Hero]

OSA is more common in CLL patients but you might want to see a sleep doc about your circadian rhythm. I nap most days that I can.

[gemit2000]

I'll tell my doctor I just recieved a doctor's referral to a doctor who specializes in sleep disorders & my doctor should give me a referral to see that doc. Thanks Doc. (tho today for first time in a month planned a softball outing & was out of bed by 7, out by 8, playing by 9, done by 11, went shopping, fed & walked the dog and it was noon, all this on less than 5 hrs of sleep... and I felt better than all those days I slept from 7 to noon. Exercise trumps sleep?)

Hope you're still doing as good as you had been recently. We all obviously were thrilled with your treatment's success.