HELP! I Need Some Sleep! Any Tips Please!

Hi Everyone

I have now finished my treatment, WLE + node clearance, chemo and Rads and just started Tamoxifen. My sleep patterns are shot to bits and although I can always get to sleep at night no probs, I usually wake at about 2am and then cannot get back to sleep for 2-3 hours, often accompanied by night sweats and really hot legs!

I have tried all the usual stuff and have a sleep/heal your body hypnosis tape that sometimes helps but now that I am looking to go back to work I really need a good nights sleep!

I have recently read about Magnolia Phellodendron Complex which claims to help sleep but can’t find anything positive to support it, has anyone tried this?

My “The Cancer Survivor’s Companion” has just arrived and I noticed there is a section on sleep, so I am off into the garden to read it.

So if you have any tips that have helped you to overcome poor sleep patterns I would love to hear them!

Take care

DaisyGirl xx

Hi Daisygirl

Cute black cat :slight_smile:

If the hot sweats are keeping you up have you tried a “Chillow” Pillow to cool you down?

The only thing I find works isn’t very healthy, Alcohol or Sleeping Tablets.

It’s horrible, I’ve had probs on and off with chemo and sleep. Its not good getting out of sync is it xxx

Hi DaisyGirl, myself and a few others are currently having this conversation on fb!! I was at docs this morn as I have not been sleeping well, I started tam at the end of May this year and had no sleeping pattern at all to start off with, I then started taking epo after 8 days I was having a few hours a night like yourself. Then wham last Friday night the sweats came back with a venguence- last night has been the worse night of them all I didn’t even have a full hours sleep at a time. The doc wouldn’t give me anything for the sweats just said it was a se which may calm down in another few weeks and that she would write to my onc who may change the tam to something else. I did come away with some sleeping tabs as I am totally knackered and I am due to go back to work in 3 weeks time.
Please let us know if you come across any suggestions whilst reading your book- enjoy your time in the garden too as it’s pouring down here in Scotland !!
Lizz xx

Melatonin sometimes works for me. It’s natural but you have to order it online. Non healthy things seem more effective sadly. Piriton. Sleeping tablets. Alcohol. Not all together! I haven’t got as far as you though. Does the book sayany more than bed time routine and get up if you can’t sleep? If it does, love to know…

Hi DaisyGirl

I found this was a real problem when I went back to work and couldn’t take naps when I needed to make up for lost sleep at night.

I tried natural remedies such as evening primrose oil, then I tried valerian, but neither made much difference. Like most people posting on here I eventually found that a low dose anti-depressant was the “least worst” option and have now settled down to 2 or 3 night sweats most nights, but at least I usually get back to sleep again after 5 minutes cooling off time.

It seems to be trial and error to find which anti-d suits you, I got some weird dreams with one, a very dry mouth with another, and I tried quite a few before I settled on Amitriptyline.

I’m fortunate that I have a very sympathetic GP who was willing to keep trying different things until we found something that suited.

Sarah x

Hi Ladies, and thanks for the replies, it is comforting to know I am not the only one struggling with this (but of course also sorry that you are also sleep deprived!).

E K, I think our cats may be related! Henry looks the picture of innocence but is VERY naughty and, like most men (even with his bit chopped off) suffers from selective deafness (i.e. only takes any notice when he wants something). They are selling the “chillow” at the hospital for £20 is this a good price? Already on the alcohol but resisting the sleeping tablets just yet. I do sometimes however, take ibuprofen in the night to help me “relax” and go back to sleep (not the heavy duty stuff with codeine) and this also sometimes helps, but again not always.

Biff - I too take EPO and I think your Doc is very mean, clearly has no problems going to sleep! Re weather, a huge black cloud has just come over, please keep them in Scotland! It is not always good to share!

GIJane - I will post a summary of the books suggestions but it does look like the “usual” advice so far!

CC - I am starting to like the idea of a low dose anti-depressant, I currently take Dixarit, high blood pressure medication that can also help with hot flushes, but I think this might exacerbate the Neuropathy symptoms, so considering asking doc for ADs at review in Sept. I have also been following the Tam threads that suggest that poor sleep/sweats are SEs of certain brands of Tam and may go for a “pincer movement” with the Doc (they hate me) and see what they come up with! (usually the flick!)

DaisyGirl xx

Hello Daisy,
Can I join your gang?I have had 3 out of 8 chemo so far (4xAC,4XTAX)
Am always tired, have no trouble getting to sleep, but wake up most nights between 2.30-4 a.m. hardly ever get back to sleep, brain kicks in, so does fear, sometimes night sweat too. Usually end up coming downstairs and looking on here!
i have some sleeping tablets, but haven’t taken them because don’t want to be drowsy in my best time which is usually morning.
Unfortunately can’t use my usual preferred drug of choice, alcohol, because it makes me feel sick at the moment - bummer!

Hi Daisy

Like you I’m having trouble getting a good night’s sleep. If I stay asleep for three hours at a time I think I’m doing pretty well. If it’s not not a hot flush that wakes me it’s my bladder- we are told to drink plenty so I do. Like you, when I wake I then can’t get back to sleep, sometimes for several hours. Do I get up or stay in bed - that’s the question?

The sleeping pills the hospital gave me didn’t do a thing(Zopiclone) and I’ve tried all the usual - valerian, sleepy time tea, camomile tea, warm milk, glass of wine etc without success. Tried the old, go to bed at the same time each night and get up at the same time each morning, and, avoid the granny nap in the afternoon routine without luck either.

Have decided next GP visit to ask for a low dose antidepresant to see if that helps.

So, you are definitely not alone - I’m taking Letrozole not Tamoxifen though. Keep up the investigations and let us know if you find the magic solution.

Hallo
Can I join in-not that I have any wonderful answers, but good to know there are others awake at the dead of night :frowning: Maybe we could have an insomniacs anonymous thread for the wee small hours :slight_smile:
I had some sleep issues before my DX, but since then (Oct 09) its gone into overdrive. I, like most of you, can get to sleep but at least 6 nights a week, get up again anytime between 2-4 hrs later.

Ive tried many remedies,sleeping tablets,tapes, blackout curtains etc etc and just havnt found an answer, so maybe between us, we can solve this awful conundrum!!!

My latest attempt, following advice of my GP, is to take Venlafaxine 300mg per day, as he says that its my low mood which is the problem-I didnt think I had a low mood, but hey ho!.I take my Tamoxifen in the morning and my GP says insomnia is one of the S.E, but thats also one for Venlafaxine too.

The effect has been to make me sleep just the ssme, but I worry about it less!.

Strangely, I used to sleep a bit better when back at my old family home-probably the ‘womb’ like emotion of being back where I grew up.

Anyway, ladies, hope that you can find some peaceful rest soon.

Best wishes
Cathie x

Hi Daisygirl and other sleep deprived ladies.

I haven’t tried sleeping tablets yet, but for me, Piriton, with or without alcohol does work. With alcohol is particularly effective but probably not recommended… I also find it easier to sleep if I’ve done some exercise, the more energetic the better, but if like me you’re knackered after chemo and rads, that isn’t always easy.

Good luck!

Al x

Hi ladies,

I had no trouble sleeping during my treatment, I was always so tired I could sleep 12hrs a day. Since I went back to work last year though I’ve struggled with sleep and tried just about everything. Night Nurse or Zopiclone are the only things that work for me. Not very healthy I’m afraid so I do try to limit using them until I’m exhausted. Mostly Friday nights when I know I don’t have to get up for work next day.

Jan xx

Hi EB, RM & SB, welcome to the Zzzzzzzzzzzz Gang (although may also double up as the BC branch of AA by the sound of it!)

Anyone who is lying there at 2am automatically qualifies but any application will be considered on its merits (extent of bad temper, bags under eyes, night sweats etc)

On a serious note, this is obviously a BIG problem, so I offer myself up to investigate and experiment this very debilitating SE and report back my findings. Anecdotal tips are welcome, I will conduct my own trials (unless it involves fish or high places, then sorry but you are on your own!)

EB - I think an IA thread is a great idea, how about the 2am Club? If any of you are awake at 2am, post… lets see how many of us there are! Sleep inducing topics only of course!

Night Night

DaisyGirl xx

Hi again DaisyGirl

My oncologist recommended Zopiclone but my GP was not keen, she said it rapidly becomes addictive. So I tried it anyway, and wow my GP was right! I had one night of excellent sleep, thought whoopee a cure at last, then the next night didn’t sleep quite as well and after that was waking at 2am with absolutely no chance of getting back to sleep for hours. Apparently this “rebound insomnia”, as it’s called, is typical of Zopiclone and the related family of “Z” type sleeping pills. Not only that but I then had to wean myself off these pills, and I’d only been on them for 7 days! Even more sleepless nights! Don’t touch this stuff - horrible, classic case of the cure being worse than the original problem.

And by the way, Amitriptyline is excellent for nerve pain. The reason it’s not used for depression these days is that it has a sedative effect and numbs the nerve endings - which makes it perfect for some of us BC sufferers.

Sarah x

can i join your gang?? Im a year post treatment and still struggling with sleep. im back at work and working shifts, which makes it EVEN worse. I have to confess to using night nurse as my sleeping aid although it only works for a couple of nites in a row…when i need a really good sleep i use sleepeze but feel a bit of a zombie in the morning (not good in my line of work!
sleep deprivation is an awful thing to suffer with because it effects every aspect of your life - hopefully between us all we can find a cure!!!

deed
x

I must admit that I’ve occasionally resorted to using some of the Tramadol I’ve got left over after surgery to ensure a good night’s sleep from time to time. Not a great idea but sometimes I’m so desperate for sleep.

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just the 3? x

Another insomniac member of the 2am club here.
Like some others I could sleep for England whilst on chemo etc but since finishing treatment am suffering sweats and sleeplessness and I haven’t even started tamoxifen yet. Had Zoplicone to help me sleep during chemo and it really helped but doc was worried about prescribing it for long. Didn’t have any problem coming off it either just gradually halved and then quartered the tablet over a week or so.
Lovely rad burn also contributing to night discomfort at the mo too.
Will be another willing guinea pig for any sleeping tips.
Nite nite girls.
Polly x

Some say prition they use it in chemo ward but iv very gd my onc sd use it but maybe only once I get cold sweats no hot they r hell

well here I am joining the all night club! not sure what the answers are either. I have been taking zopiclone for 5 years,not originally related to bc ,Personally for me they worked wonderfully for 3/4years.My docs say not addictive as such but like any drug the body does build up a tolerance to them and some find they need 2 to do the job that 1 used to do. In my case when tolerance started to build I changed to another type for month or so then changed back and all worked well,this last month or so tho sleep eludes me like most here 2/3hrs at most then wide awake-not so good huh.But as general thing I found them wonderful -no morning drowsiness just full nights sleep.I know all this stuff is a trade off so its a personal choice which way we go.Trial and error i guess but when they work well they are a godsend. Sweet dreams to us …if poss.