Sleep problems

[Hazel33]

I don't know if insomnia is linked to CLL but I constantly have insomnia. I manage to fall asleep when I go to bed but wake a couple of hours later unable to sleep until the morning. It is very draining. Does anyone else suffer and are there any solutions other than sleeping pills, which I do not want to take.

[devonrr]

Perhaps a coincidence. I slept poorly in the 3 yrs before diagnosis and the subsequent 18 months before treatment. Waking several times at night and sometimes dozing off late afternoon.

After treatment I sleep well and enjoy at least 7 hours sleep. I am awake all day and very energetic. Perhaps that is the reason or just a coincidence. Others may link sleep problems with body temperature and B symptoms. Interesting to see replies.

[ReneeSusan in reply to devonrr]

My sleep problems started a year before SLL returned in my nasopharynx making it difficult to breathe. I still have sleep problems now 6 years later and now on my 3rd round of treatments. Had to resort to sleeping pills as all other and I mean I exhausted all other alternative therapies!

[cll2013 in reply to devonrr]

While sleep issues are not unusual for post 60 aged women, I am convinced that CLL is part of the inability to have a complete night's sleep every night. Some nights are normal sleep times, but at least 3 nights a week, I have sleep interruption or cannot go to sleep at all. This issue is one most oncologists ignore or skirt over, but a CLL Specialist will acknowledge. I've tried melatonin but it rarely helps. Sometimes Tyloenol helps. So, I usually read a book during those middle of the night wake hours.

[Hidden]

You're describing something happening to me right now. Bed at midnight, awake and twiddling thumbs two hours later.

Being smart, opted to watch garbage on telly until 4am. Awake and twiddling thumbs at 6am.

The "fix" for me turned out to be cutting the lawn. All the up/down action comes out at 1.3 miles (gps tagged the mower one day!) and despite it taking the best part of a day to do, due to both pain and internal battery running flat, by midnight I could not keep awake.

Slept soundly until 7am.

To check it wasn't a fluke, I again cut the lawn on Saturday (it didn't really need cut) and by midnight, fell asleep while sitting upright watching telly.

My lawnmower is self propelled obviously, giving me something to lean on while walking. And it takes 3 sessions before all the lawn is cut.

The lesson, I guess, is exercise works - for me.

[maggiewillow in reply to Hidden]

I have had CLL for 10 years (diagnosed 2years ago) I also have problems staying asleep. I collapse at about 9.30pm and then sometimes am awake at 2am for the rest of the night.I used to take Diazepam which made me manically depressed and suicidal so I stopped them.Feel much better now.I find the only thing that works for me is to Read a good book quietly in bed.I don't get angry or frustrated that I can't go back to sleep as this would create negative emotions.The worse thing I feel we could do is watch TV or have any "gadgets" at hand.

[wmay13241 in reply to maggiewillow]

The blue light emitted by TVs and computers interfere with sleep. Try wearing orange-tinted glasses two hours before going to bed. You can get a low-cost pair of orange-tinted glasses at ebay.com. drweil.com/health-wellness/...

[deveritt in reply to wmay13241]

Some devices now come with a 'nightime' blue-blocking mode (the latest Windows and Apple iOS devices have it as part of the system). Or you can install software that does this for you. On Mac OS X I use f.lux - see justgetflux.com/

[albie58]

Hi Hazel33!

I find I sleep best if I cut out all caffeine by noon and exercise on a regular basis. Exercise also keeps anxiety down, which is a big reason why lots of folks have problems sleeping. Drinking tart cherry juice can also help as it contains melatonin, which makes your body relax naturally. Good Luck! Let us know what works for you! 😊

[ygtgo]

I can have trouble getting a good nights sleep due to tinnitus.

I have a routine where I wind down last thing in the evening by listening to audiobooks or BBC radio4/world service through a pillow speaker with the volume at a low setting. I use a low volume setting as the objective is to drift to sleep and not to stay awake listening to the radio.

A story at bedtime works putting kids to sleep ... same idea/objective.

I accept that there are times when the tinnitus is bad and I have no choice but to accept a poor sleep patern.

I'd ask Mrs ygtgo to tell me a story, but I'm not sure that I want to hear the fairytales that she would say about me ... alternatively, she'd probably just read out this months bills and I'd be up all night.

I hope that you find something that works for you ... If I'm ever having a bad day, I just hope for a good nights sleep, it makes all the difference if you have a chronic condition.

ygtgo

[rcknow]

I had problems with sleep anxiety in the 3 years before my diagnosis, though I think it was due to my tendency to anxiety and not CLL What helped me was mindfulness meditation. There is a website for the Sleep School in London which has helpful information and a great app you can download.

[Hazel33]

Thank you all for responding. I feel really tired and exhausted all day due to probably just 3 hours sleep in all. Wondered if it was my CLL or just anxiety. I drop off to sleep but up again 2 hours later. It's a long night.

[cllady01 Former Volunteer]

Hi Hazel,

My sleep pattern is sporadic. I can go for a week going to bed at my regular time, falling asleep and sleeping for 2 or 3 hours. I then wake and cannot go back to sleep, so go to the couch and turn on TV which usually, eventually means sleep. However, there are nights I am awake until 4 or 5 AM--can then sleep for a few hours if I go back to bed.

Walking helps, if the weather and my lethargy permits it. I live in a hilly neighborhood which is good for all the muscles to get a work out and I am not tired after the walk but find i am a bit more energetic. On days I walk at least one round of the neighborhood, I usually sleep well. And often have a week or two of 7 hours a night.

Also, I do believe my sleep is helped by not eating anything after 6:00--my enlarged spleen can make a full meal later than that cause discomfort (not pain always) for the night.

[Shortcake2]

I have this same issue most nights. Part of mine is the night sweats. It leaves me drained the next day.

[JKDLED]

Hi Hazel33. I also suffer from insomnia. I have tried herbal supplements to no avail. Magnesium helps. I like the spray and relaxation tapes. Unfortunately, I must take sleep meds. I have tried and tried to stop them but the lack of sleep feels more damaging. I hope you find something that helps. Good luck.

[Bubnojay]

Waking after just a few hours sleep according to my GP is a sign of depression. I understand your being against pill taking but if your quality of life is affected it is worth trying for a short while.

Wishing you find a solution

Bubnjay1

[Hazel33 in reply to Bubnojay]

Could be a sign of stress/depression but it's a "catch 22". Who wouldn't feel depressed if they can't sleep? Many thanks for your response. A lot of the time it's the night sweats that wake me, and then it becomes a pattern

[Shooey]

An antihistamine tablet just before bed helps me, doc seems ok with this rather than sleeping pills! Only came across this by accident as I take 2 paracetamol and an antihistamine before I do my immunoglobulin infusions which is always in the evening. I hadn't linked poor sleep with the CLL but looking back it all started about 10 years ago which coincides roughly with diagnosis. I put my poor sleep patterns down to a stressful job but instead of fretting about work I now fret about treatment which is due to start shortly. The night sweats don't help but if I can summon up the energy a couple of hours at the gym does!

Guess it's just another 'hidden' symptom we have to deal with.

Shooey

[Roydeane]

Try 25mg Seroquel. It is used in much higher doses like 200 or 400 mg for all kinds of mental / emotional disorders but at 25mg it is a non addictive sleep aid with no side effects but require prescription. It is also an off label use. Often people who are addicts or alcoholics will take this because it is non addictive. I have been taking it for 10 years though recently it is not working as well i think because of the CLL but not sure. IT IS NOT LIKE Abien or those drugs at all. Good luck.

[bhayes84]

I've been taking a Tbsp of potato starch twice a day and find I sleep much better and I also dream more. I tried this after hearing it mentioned by a doctor in PBS pledge talk. It sounded nutty but there are lots of new studies showing that our gut microbiome can affect the brain. It works in the gut (not small intestines) because it's indigestible (so no calories) but this also means that it can cause some gas, but not as bad as beans and I find it fair trade-off to sleep better.

I also agree with an earlier poster that using orange tinted glasses 30 minutes to an hour before bed can help.

I've also had to cut out all caffeine other than an occasional 1/2 cup of real tea in the morning. At 67 I guess my liver just can't clear all caffeine out of my system by bedtime.

[blueHeike]

I am sorry you are suffering from insomnia, Hazel33 - that must be so tiring! I realized my sleep has gotten worse in the last few months (louder snoring, waking up more during the night, and feeling really tired in the morning even though I thought I had gotten enough sleep). My doctor recommended a sleep study. Turns out I have now moderate obstructive sleep apnea and the sleep doctor says it might be getting worse not just because of age but also because my lymph nodes in my neck are all getting noticeably bigger. Looks like there is a cpap machine in my future - whatever it takes to feel rested, right?

[Cllcanada Top Poster CURE Hero in reply to blueHeike]

OSA in CLL patients is fairly common and smart docs are ordering sleep studies...

I was on a CPAP for about a year, but through exercise, lost a great deal of weight and was retested. I no longer required the machine...

~chris

[blueHeike in reply to Cllcanada]

I have tried that. I love the fact that I am not overweight anymore and the apnea seems to have gotten worse. But thank you for sharing this - it definitely encourages me to keep to my healthy diet and hopefully treatment later might have the nice side effect to shrink whatever needs shrinking, including those obstructions. Right now the cpap machine sounds like an amazing option - one night of real sleep would make it all worth while!

[roszika]

Hi I am not sure why we suffer from insomina as we get older. It is very hard to define if it is to do with CLL because people of 60 or over that do not have CLL or any other condition also complain of insomnia. In my 43 years as a practicing pharmacist I cannot count the number of sleeping pills I would have dispensed for all sorts of conditions. As I have said previously I was diagnosed with CLL about 6 and a half years ago and was on W and W but that changes next week as my specialist has prescribed chlorambucil. My blood picture shows that in the first 6 years my WBC count went to 72,000, increasing in 3 to 4000 lots every few months but in the last 6 months it has gone up another 86,000, more that in the previous 6 years. My insomnia did seem to get worse about 6 years ago. Is it CLL? Is it old age creeping up? Is it endemic of people over 60? Who knows and will we ever know because so many older people have the problem.

[mcavanaugh]

I have the sleep problem too. My main worry is not looking like a zombie at work, and then the wicked watching the righteous and seeking to slay me because my eyes are red, and it looks like I am on something. So, I have 5mg of melatonin, 450mg of valerian root, and one 25mg unisom every night. A very important thing is to make sure it is very dark, with no computer or phone blue light visible. I now sleep most nights, instead of every other day now due to the revolutionary discovery that blue light was interfering with my sleep. It is also important for me to fall asleep very early, like 9pm. This way, when I wake up at 1am, I will at least have had 4 hours of sleep. This sleep problem is the most terrible thing. I also have been on cpap for 15 years as well, so I need Afrin too to breath through the mask. Of course walking, when I can, helps me get better sleep as well. Another thing, benzos or other drugs, only make it worse, and the sleep more erratic. I don't want to take the unisom, but have no choice for now. I was dx in sept 2015 stage 4, and bloods are perfect now two years later after 4 rounds of FCR - The sleep problem is the worst thing for me, and I pray for all of us to overcome this problem, as It greatly affects our happiness and quality of life. Try to darken the room, and I think you will be surprised.