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Sleepless nights

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Re: Sleepless nights

Tank god for this sight!!!!! I didnt know that the sleepless nights were a side effect, i just thought thatit was me! I too have night sweats but they are not what keep me awake all the time!
I infact went to my docs yesterday and asked for sleeping tablets just one i said but he wouold not prescribe me any!
Its vile!!

x

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Re: Sleepless nights

OMG it makes me feel so much better to read the posts talking about sleepness nights on Tamoxifen..
I have been taking Tamoxifen for 6months now and like so many of you I have no problem getting to sleep, quite often really tired but will wake up after a couple of hours finding it hard to get back to sleep again! Often I find myself restless in and out of the covers, hot and cold. Reading that so many of us are having the same symptons surely it must be related to Tamoxifen??
I work full time and find it hard sometimes to keep going with so little sleep, but feel I have put so much into my body over the last year the last thing I want to do is take medicines for it.

Lisa

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Re: Sleepless nights

I have tried everything. I have found what works best for me now is listening to the radio in bed with earphones. I don't listen to music but to a talk channel. Because I am listening to speech I drift off without worrying about whether I can sleep or not because I am thinking about something else. I do not get so anxious about not sleeping. I still wake up in the night, but relisten to the talking and drift off again. I can never remember in the morning anything that I have been listening to and I now wake up in the morning much more refreshed than I did. I hope this works for you.

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Re: Sleepless nights

I'm so glad I've come across this thread. I've only been on Tamoxifen for 3 months & despite being on a night time anti-depressant I'm waking at around 3am & 5am regulary with hot flushes/sweats (these started after 2 cycles of epirubicin & my periods stopped). Then at least twice a week I don't go back to sleep at all even when I've cold off. I had my blood tested lsat week & my GP described me as post-menopausal at age 44. I'm guessing my body is trying to catch up after being catapulted into the menopause 9 months ago. The blood tests also showed my thyroid as slightly underactive so I now have a low dose of thyroxine. Fingers crossed that over the coming months my sleep pattern will settle down & I won't feel like I'm dragging myself through life post treatment. I want to get out there & live again. I'm still waiting for my 3 month catch-up with the oncologist & I'll see what he has to say about things. Mildredx

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Re: Sleepless nights

Sympathies to all suffering sleepless nights. Mine are due to uncomfortable expander implants -I wake 3 or 4 times a night.

Here's something to try that I learned on a course of relaxation classes. The theory is to distract your mind from any emotional turmoil so you can be calm and drift off to sleep.

1) Go through the alphabet thinking of a country (or girls name/ boys name / film star etc etc.) for each letter. If you can't think of one then move on to the next letter.

2) Count backwards from 500 or 1000 subtracting 3 each time.

Sometimes it works..... if all else fails you can be sure you're not the only one lying there wide awake - logon to the forums and see who the other night owls are.

Best Wishes
Misha

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Re: Sleepless nights

Have just found this thread about sleepless nights. I have no trouble going to sleep but like most of you start to wake on and off about 2-3 hours later - hot, cold, duvet on, duvet off. Even when it has been bitterly cold I have the window wide open and a fan going all night, the theory being that at least if it is cold I can stay under the covers and feel comfortable. The ONC did tell me I could go on to Arimidex but if it is the same as Tamoxifen I may as well stay on that. Have been on it since Sept 2008 and always take it first thing in the morning. The problem is that I am tired all day and the ONC did say that Tamoxifen can make you tired because of it being a hormone tablet, but that added to lack of sleep at night makes me like a zombie all day and all I want to do is sit in front of the tv and doze.

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Re: Sleepless nights

I have been on Tamoxifen since May 04,.....hot flushes tend to ease then start again.....night sweats are back at mo' with avengence....have been on zolpidem [ sleeping tablets ] since dx......but when sweats are bad even those don't help me sleep.
Same story..go off to sleep then am awake anything from 1am to 5am....then am ready to go to sleep but its time to get up for work...at the moment I'm completely drained from it.
Have had acupuncture in the past for menopausal symptoms and anxiety and must admit it helped alot.....but due to costs can't afford anymore.
I'm also going to ask my GP for a blood test to check hormones on Friday...didnt have one last yesr but the year before my results came back as being pre-menopausal....although I had a hysterectomy nearly 10 years ago I still have my ovaries....my GP said bout the last results that if I was trying for ababy it would be a good level!!...not exactly what I wanted to hear!!

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Re: Sleepless nights

I've been on Tamoxifen for exactly 1 year now and still can't sleep. I have severe night sweats - in and out of the covers all night. I wake up about 2.30 every morning and then just sleep in fits and starts. Specialist says this is not symptomatic of Tamoxifen but more of chemo induced menopause. I have had a blood test to check menopause status (only one period since chemo finished a year ago) and am on the way but not quite there yet! Am hoping the sweats and sleep disturbances may stop when menopause is complete (am having another blood test in June).

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Re: Sleepless nights

Hi
I have been on tamoxifen arimdex and now aromasin and they all have the same effect. 2 /3 hours sleep and then i wake up. I have tried everything from relaxation classes to acupuncture, staying up late, warm milky drinks, cut out tea and coffee but nothing has worked. To be honest after a while your body just gets use to it. It has been about 4 i/2 years of taken these various tablets but the bottom line is if it stops or slows down the cancer coming back it is a small price to pay. I have had secondary cancer so been through treatment twice. (excuse spelling errors was unable to check as site was playing up)

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Re: Sleepless nights

Hi slimpet

You're right in waiting to check with your BCN before going ahead and taking anything that isn't prescribed.

Take care,
Jo, Facilitator

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Re: Sleepless nights

Hi all, just wondering if anyone knows if it is ok to take Nytol with Arimidex, i am getting off to sleep ok but tend to wake up 2/3 times after a few hours, i admit i have taken half of one cos i was so tired and it seemed to work, but a bit scared in case i`m doing wrong, will ring my BCNon Monday, but would appreciate a bit of advice from anyone,
cheers, Slimpet.

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Re: Sleepless nights

Hi everyone

This could be me too especially Sheanna's duvet on..duvet off description. I am on Aromasin which I take at night and (the now discontinued) Megace so my hot flushes are less but still finding that staying asleep is the biggest problem. My partner says I seem to be asleep for most of the night but then he sleeps very deeply so how would he know! Funnily enough the only really good nights sleep I have had recently were the 2 weeks we spent in Portugal, nice warm weather so hot flushes/general over heating barely noticeable. Um, maybe the extra booze might have had something to do with it too!! Can I get that on prescription then LOL.

Wendy x

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Re: Sleepless nights

Hello,

Have just seen this thread and am glad I am not the only one, although sorry everyone else is suffering.

I started on Tamoxifen on 1 Sept and haven't had a decent nights sleep since. Like the majority of you, I don't really have a problem getting off to sleep, its staying asleep thats the problem - doesn't seem to make any difference what time I go to bed but 2 to 3 hours then wide awake and then repeat throughout the night.

To start off with I was aware of hot flushes waking me up but over the last couple of weeks I just wake up for no apparent reason - its as though body is saying "right thats it, time to wake up!" Last week I tried a relaxation class at the hospital as thought that this may help but, when put into practice I got so hung up over when to breathe and when to hold it that I woke myself up even more! In desperation have got an appointment with GP tomorrow to talk about some sleeping pills - hopefully to break this cycle. Also hoping to go back to work next week so hopefully some physical and mental activity will help.

Saw onc today and he asked when I took my tablet, which I do in the morning, he suggested trying last thing at night as sometimes this can make a difference - worth a try.

Does the timing of it really make a difference as to when you get your hot flushes? - am coping ok with them during the day but things always seem much worse during the middle of the night (add that to the continual tingling feet and sore toe nails left over from the Taxotere).

Well might as well see if I can catch some ZZZZ's

Hugs to all

Spongebob xx

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Re: Sleepless nights

So nice to see similar problems, and know that this is not all in the mind!! I was on arimidex - and was switched - due to really sore muscles. I had a break of about 5 weeks in between Arimidex and Tamox and the difference was incredible. Better sleep, less anxiety, better brain function - almost human in fact. Now settling on the Tamox - about 3 months. much less muscle pain, but the hot flushes come and go at random, anxiety attacks keep the heart pounding on occassion and the lack of sleep is awful. Fine going in the evening, but the lights come on between 0330 and 0430. I watch alot of TV. Really shud get the knitting out!! I too will check to see who is about in the forums at these ungodly hours..

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Re: Sleepless nights

I find the worst thing about these sleepless nights is not having anyone to talk to. Are all you wide awake flushing comrades posting on here in the night? If so I will join you.

Yawn .......... Jilly

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Re: Sleepless nights

Good news - the Nytol worked!!!! Just hope it isn't a one off. I used to take my Tamoxifen at night but now take it in the morning but it's not made any difference to the night sweats. The only plus side is that when I have a hot flush now during the day (didn't get any during day when I took the tab at night) I can at least go and stand outside to cool down!

Good Luck Everyone

Claire

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Re: Sleepless nights

I take my Tamoxifen last thing at night. Reason being cause I didn't fancy being pestered by hot flushes during the day. Last night I only woke up once, at midnight, then slept through 'til nearly 7am!!!! Woohoo!!!!!!!!

Kelly
-x-

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Re: Sleepless nights

I've been suffering with the no sleep, disturbed sleep, can't drift off, hot flush etc, etc for over four years since diagnosis and treatment. Tried everything.... but the only thing which does definitely work is Bach's Rescue Remedy Night (think thats what its called). I don't normally believe in these sort of remedies but have to say, it takes a while to kick in but works every time now. You can buy in Boots - worth a try everyone...!

wisps

PS I'm on Arimidex too.

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Re: Sleepless nights

First thing in the morning....

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Re: Sleepless nights

Does anyone think it might be connected withwhen you take it? I suffer the same pattern as you all and take it last thing at night. What about anyone else?

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Re: Sleepless nights

Hi,

I am the same as you ladies have described................never sleep more than a few hours at a time........often have very weird dreams.............leg out the bed......both legs out the bed......back in under the duvet..........duvet half off.........duvet all off.............fan on.........fan off...........visit the loo........then cold..........electric blanket on........quickly off again.........leg out.......leg in.........and so on and on and..........zzzzzzzzzzzz

Sheana x

PS....I'm on Arimidex.

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Re: Sleepless nights

Hi All

Been trawling through old posts and found this one about sleepless nights whilst on Tamoxifen (though I'm presuming it's Tam as on Zoladex as well). Seen GP today - can't take sleeping tabs due to interaction with other meds I'm on but he suggested Nytol (it's an antihistamine and works in same way as Piriton ie makes you sleepy) so will try it tonight. I take ages to drift off to sleep - as soon as I lie down the hot sweats start so the duvet is on, off, on, off, on, off then when finally fall asleep I wake 2 or 3 hours later bathed in hot and then cold sweat ugh!! Up to now been putting up with it but go back to work next Tues so need to start getting a good night's sleep otherwise will be wandering round like a zombie come Tuesday!

Take care everyone

Claire

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Re: Sleepless nights

Ditto Kelly, I think the last time I had a decent nights sleep was over 4 years ago! But I feel good that I am no way alone. I've just watched a programme about sleep probs with Toyah Wilcox. She says that she has been an insomniac for 36 years! Sleep probs these days are apparently very common, so we are in good company. Like you, most nights I go off ok, but then keep waking up . On a bad night like the last 2, I wake up every hour. The menopause plays a big part, with the night sweats. Even with these cold nights I feel hot and restless all night and can't seem to cool down. I end up dangling my feet out the bed! I have a chillow pillow, that helps a bit. I agree with you it is very frustrating, especially when you have to get up for work feeling c***p!
Lets hope we all manage a few zzzzzzzz tonight
Sweet dreams Smiley Happy (hopefully)

Cynthia
xx

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Re: Sleepless nights

Hi all,

blimey I'm glad (for want of a better word!) to see that I'm not the only one! I too have no trouble whatsoever falling asleep, its just staying asleep that I can't seem to manage!! I frequently wake up several times a night, the first time being usually only aftera couple of hours. Its sooooo frustrating, I honestly can't remember the last time I had a decent nights sleep!

Kelly
-x-

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Re: Sleepless nights

Same here with broken sleep too. I end up watching the Crime and Investigation channel on SKY. Have no trouble falling asleep, but always wake up after 2 or 3 hours.

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Re: Sleepless nights

I'm on Arimidex and I spend at least a couple of hours most nights up watching TV - who knew that Poker on TV could be so interesting! I have tried everything including zopiclone (which made it worse!) Temazipam works for me, but I try not to take it and when I do I only take 3 nights in succession to try and beat the pattern. The other thing that did help when I was up every night was Paul MacKenna's tape. I still do use his technique to try and get to sleep!

What I do now is get up, make a cup of tea and turn the lounge out at least twice a week - polishing, dusting etc but no hoovering! The neighbours must think I'm crackers. At least in the day when I'm tired I haven't got housework hanging over me. I might add my sleep pattern has been like this for many years.

Sharon

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Re: Sleepless nights

Hi Ann,
I am suffering like you with the sleepless nights - I also get to sleep easily and start waking up 2-3 hours later and from then on every hour or so. I'm finding it hard to function normally now during the day as I'm just sooo tired! I saw my doctor today and she said she had not heard of tamoxifen causing sleeplessness but has temporarily reduced my tamoxifen to 10mg a day to see if it makes a difference. I thought the sleeplessness got worse when I went up to full dose a couple of months ago. I've also tried herbal sleep tablets, and zopiclone (a prescribed sleeping pill) - and still I wake up. My doctor is worried that I may have depression due to what's happened to me, which may be causing the insomnia - have you been told this too?
I am relieved to know it's not just me though!

Good luck!

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Re: Sleepless nights

Hi Ann

I am on tamoxifen and zoladex, I'm not sure how you feel about taking none herbal remedies for any length of time.
I had trouble sleeping before dx in December 07 and have really struggled ever since, my GP has put me on a low dose anti anxiety drug which I take about 30 mins before bedtime. As a low dose they dont give me a muzzy head in the morning. He reckons they also take the edge of the obvious other anxiety issues I have at the minute and to be honest I think he's right, so far so good. I too generally get to sleep and then wake up after a couple of hours but after being on the 50mg dusolepin (normal dose 75 to 150 mg a day) for a month I have settled down nicely and not even the odd hot or cold flush wakes me up now.
Good luck Shonagh xx

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Re: Sleepless nights

Have you tried camomile tea? I find it helps me to sleep.

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Re: Sleepless nights

Somehow you need to break your sleep or interrupted sleep pattern. Are you sure it is not the night sweats that wake you up? For me that is the problem. Have you tried staying up really late to see if you can sleep through? Maybe a short course of sleeping pills would get you back into a normal pattern. Good luck.

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Sleepless nights

I could give a never ending list of the side effects I'm suffering since taking
Tamoxifen since last August. Most of them I can live with or finding herbal
remedies. But my one big problem is sleepless nights. Yes I wake up
with the night sweats but that's not what keeps me awake don't know
what it is, i go to sleep without a problem but only sleep roughly 2-3 hours
then wide awake. Most nights I'm lucky if I get 4 hours of broken sleep.
I've tried all the normal remedies Nytol, Valerian , Milky drinks. I was given
a short course of sleeping tablets when dx last year but they are nearly gone.
Any ideas would be really great