Can't sleep: Does anybody else has the same... - CLL Support

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Can't sleep

Jlee123 profile image
17 Replies

Does anybody else has the same trouble can't sleep at all

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Jlee123 profile image
Jlee123
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17 Replies
Flabal profile image
Flabal

I can’t sleep too much. Not as much as I feel I need. But I don’t think this is to do with CLL. Just normal changes if getting older(?).

Either way. Maybe go to your doctor. They may be able to help.

Best of luck.

Hazel33 profile image
Hazel33

I don't sleep much either. I may fall asleep but wake again an hour or two later. I never get a complete nights sleep, and always up around 5.30 am. I wonder if its anything to do with the CLL, or as you say could be age related. ZZZZZzzzzzzzz

Probably why I'm always grumpy :(

Hazel

Newdawn profile image
NewdawnAdministrator

My body seems to love daytime sleeping more and I can’t dissuade it otherwise!

Newdawn

mrsjsmith profile image
mrsjsmith in reply toNewdawn

I am the same ! Awake most of the night but fall asleep watching TV ! Often wake up just as a programme is finishing! ...

C x

in reply toNewdawn

Yes, I can close my eyes with zero problems anytime after noontime and fall right to sleep for 2 or 3 hours....not quite that easy after 9pm....is that weird or what....

Shedman profile image
Shedman

What is happening / what are you thinking about? - whilst you are unable to sleep..

My guess, as a childhood insomniac and CLL'er getting interrupted bad sleep for a year or more, is that your brain is busy with all manner of thought processes: worry, fear, world-weariness, to-do lists, etc.

The other angle to explore is reducing several things in the hours before bedtime: blue light (LED lights of all kinds - room lights, LED TV, LED tablet screen, LED mobile phone screen..) -- some even suggest wearing yellow 'driving' spectacles in the hours before bed to filter out blue light -- avoid eating late and avoid conflict before bed too.. Don't watch or read things that distress or work you up, be they thrillers or politics or sad things or football..

But my best recommendation --- one that I must return to using --- I discovered during back injury 6 years ago, in acute pain. My concoction of pain relief drugs + brandy wore off by 3am, thus I awoke at 3am every night.

A friend gave me a hypnosis audio and thought it might help.. She was correct - the first part of all hypnosis audio involves induction in to relaxation.. All that mumbo jumbo about breathing slowly and deeply, and exhaling slowly, and r-e-l-a-x-i-n-g.. Over and over.. I chose to do what I was told..

If you are able to decide to do what those audio hypnosis things tell you, and you are tired, you won't ever hear the further words about improving your life/giving up addictive behaviour/improving your self-esteem/being more successful.. You'll be sound asleep during the relaxation talk, in about 4-7 minutes.. your mind will be cleared of anxiety and thought clutter..

This worked for me every time during intense back pain.. My mind switched off thinking about the pain.. I conclude the pain diminished and sleep took over.

Some people posit that their meditation audio is the same as hypnosis. I don't know about meditation. Hypnosis audio..

(not the hysteria stage shows that call themselves 'hypnosis' on TV, where volunteers from the audience do silly things in a state of alleged hypnosis, but it is actually hysteria)

..well, hypnosis starts with relaxation -- the technique has most of it's power through the patient relaxing, whereby their 'demons' or issues return to their very ordinary dimensions and are no longer the stuff of nightmares.

MsChief profile image
MsChief in reply toShedman

Think I will try the hypnosis audio - thank you. I have all the symptoms of sleep deprivation. If I get up in the night other than to pee I am so exhausted the next day I can’t do much. All best, MsChief.

Shedman profile image
Shedman in reply toMsChief

I really have no idea why I'm not listening to the hypnosis audio in recent weeks - my sleep has been awful. Back when I used it my life was the single life, maybe now it is trickier - I'm not one for earphones and it would be odd sharing the audio with partner.. Likely she'd not like it!

I find that my prayers at bedtime help me fall asleep. I used to lay awake worrying and trying to solve the problems of the world. Now, I release my worries to God and ask that He take care of them. Sounds silly to some, but it works for me. Each morning before getting out of bed, I take the first half hour and pray for people in my life and people on this forum going through difficult times. My day then starts with positivity. I’m not promoting anything, only sharing what works for me. I sleep well and start each day with an attitude of peace and comfort. Kindness, Sally

Cllcanada profile image
CllcanadaTop Poster CURE Hero

NetFlix on Night Shift... I'm out in 5 minutes, a one hour TV episode lasts me a week ... 💤💤💤

~chris

in reply toCllcanada

Ha Ha Ha you are like Renee...she can't read in bed...she gets like 2 pages done and falls right to sleep. She reads really fast and I have seen her take months to finish a book like that :) She can have her computer on, a tablet playing Netflix and read...and fall right o sleep....

Me, I can not watch TV or read in bed and really like it dark dark, no sound.....I will never get to sleep if I read or watch TV....end up read the whole book or binge watch something dumb on TV.....

I love how different we all are in these little situations :) It makes life fun

TimHB profile image
TimHB

I haven't slept a single night since starting treatment with obinutuzumab and ibrutinib 6 weeks ago. I fall asleep right away but wake up an hour later and am awake until about 5am when I sleep til about 7, then get up feeling exhausted. Part of the problem is my lymph node pain in my neck and joint pain side effect of the ibrutinib all flare up at night. My docs are having me try various combinations of AdvilPM and CBD oil for the pain (effective) and Ambien and melatonin for sleep (not effective). Haven't found a solution yet, but know you're not alone.

MsChief profile image
MsChief in reply toTimHB

Does your MD prescribe CBD oil for you? Where do you obtain it from? I also found melatonin and Ambien ineffective. PM meds contain Benadryl but ibuprophen ontra-indicated with CLL. Anyone comment? Take care. MsChief

TimHB profile image
TimHB in reply toMsChief

All my docs, including the CLL specialists I've seen, recommended CBD. I was hesitant until I was desperate for anything to help sleep. In California it's widely available and it's legal nationwide. You can buy it online through Amazon.

Shedman profile image
Shedman in reply toTimHB

Sorry to hear that. Do consider my hypnosis audio suggestion - with the very worst back pain a few years back, I was out like a pain-free light in about 7 minutes..

** I have no idea why I am not doing it currently ** as my sleep is a mess.

Today, with cooler weather arriving overnight, I still slept bad, but from about 8:15 got a good hour and a half in.. I now feel human.

These posts always interest me. For my entire life I was a poor sleeper....go to bed very late...maybe 2 or 3 in the AM...sleep not great and get up around 8 or 9. Since about 6 months after being diagnosed I have been sleeping like a baby....not that it helps me..I wake feeling tired....I don't know if it is related to CLL or not...b

I did spend time learning some simple meditation practices (nothing complicated) and learned to let go of troubling thoughts until the AM...and slow my thinking down, not follow 4 or 5 thoughts at once....almost like counting sheep.....I can't honestly say which one is the reason I sleep pretty good these days...CLL or simple mediation....I think a little of both maybe.

Course, I slept badly last night for no reason....awake til 3...then awake every hour until I got up around 7....but it was doctor day so that could of had something to do with it.

Scott

ygtgo profile image
ygtgo

Can't sleep when the tinnitus is bad ... especially when it is 'explosive'.

I 'feel' the explosion in the center of my brain.

What I do is to 'settle down' for an hour or so before I go to bed ... it becomes a routine.

Each night I watch 10 mins or so of a dvd ... check a few e-mails and then put on the headphones and listen to an audio book ... it has to be an audio book, just someone talking quietly ... a ' bedtime story '

If I wake early in bed, I use a pillow speaker ... no music or anything stimulating ... again it is an audio book or Radio 4 world service which is set to a low level that I cannot follow or get involved with any conversation going on.

If that fails, I just say ... " Bugger it ! " .... and get up out of bed.

ygtgzzzzzzzzzz

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