I used to sleep like a baby. For all of my 47 years, I’ve always enjoyed easy and good sleep. Heck, even through all my chemo and surgery, the one thing I could always rely on was a good night’s sleep.
Since I began Tamixofen on Jan 2, sleep is a lottery. My bed, once a haven of peace and tranquility, is now a battleground. Last night, for example, I had a hot flush every half hour and four hours of palpitations before I finally fell asleep for a couple of hours. That was the third night in a row like that.
I’m fed up. Please tell me it gets better. Or tell me you’re also lying awake at night for hour after hour, listening to your own heart thumping away, seemingly too loud and too fast. Tell me you try to ignore it like I do and tell yourself it’ll stop soon - except it never does. Tell me you’ve tried deep breathing but it doesn’t work. Tell me you avoid lying on your left side because you can feel your heart thumping against the mattress.
Tonight, for the first time in my life, I’m going to try a sleeping pill to send me to sleep. It better work!
Hi Yvonne,
You poor thing - poor sleep is such a misable thing. Go ahead and take the sleeping pill. You need the tamoxifen to keep your BC at bay, and it’s simply a chemical effect that’s making you sleep poorly. So what’s the harm in using another chemical as the antidote? Don’t beat yourself up about it.
I started tamoxifen on the 3rd! I have mostly slept OK, but have to say i’m particularly exhausted at the moment due to husband and son coughing for 8 weeks, lots of early starts, and returning to work this week. However i have felt very nauseous since I started taking them.
Let’s just hope it’s beginners bad luck and will all settle down in a couple of weeks.
Hope you have a brilliant sleep tonight
Jacquie x
Hi
I put up with this for the last 6 months, it was ok when I wasn’t working and could and sleep from 8 in the morning till midday! However as son as I started back at work I just could not function, I was taut, a friend described me as looking like any tiny thing would make me explode… so went to docs, checked iron, liver etc… nothing how I felt was caused by a total lack of deep sleep.
Now I know that this may be a fluke but I started on vit E and evening primrose last wednesday and I have had a full weeks sleep, I feel human, smiling again, people have stopped tiptoeing around me so much. I have also done at least half an hours exercise each day…fingers crossed, there is nothing worse than sleep deficiency.
hope it gets better, it all never seems to end sometimes…claire
That’s interesting. I’ve been taking sleeping tablets on/off for 18 months - never got tired on chemotherapy or radiotherapy but recently felt tired at last and when I think about it, it has coincided with taking Vit E - maybe it’s just a coincidence.
A neighbour of mine was a chronic insomniac until last summer when she started taking a supplement - it was either zinc or magnesium, I forget which, doh.
Hi Yvonne - I know exactly how you feel and identify 100% with hearing the fast heart beat. I sometimes find myself hyperventilating and then do my yoga breathing which does help. I find a Valium helps a lot if you can get your GP to give you a prescription. They are very reluctant but I made a huge fuss. Do hope you feel better soon - there is nothing worse than sleepless nights. I need 9 hours but can’t remember the last time that happened. Have been on Tamoxifen and now on Arimidex.
Dear Yvonne
Sorry to hear about your side effects. I have been there!!!
Just to let you know I took Tamoxifen for five years and Oh I felt marvellous when I stopped!!!
However this time my tumour was ER and PR neg and HER2 +++ and I am on Herceptin. I think having to take Tamoxifen is preferable!
I know, it is horrible though!!!
Well, I’m happy to say that last night I had a really good sleep and I didn’t even take the sleeping pill! I wish I knew what made the difference, but I can’t think of anything I did differently yesterday to any of my ‘bad night’ days. Fingers crossed for another good night tonight.
Hi Yvonne,
I know just what you are going through. Since I started the menopause about 4 years ago. I haven’t had a decent nights sleep. On a good night, I wake up 4 times. on a bad night its every hour! A couple of nights I couldn’t get to sleep ‘til 5 0’ clock and the dawn chorus had started! When this started I worried about it, as like you I was experiencing a rapid heartbeat. But I think that was anxiety about not sleeping. Anyway the problem got worse. I tried everything, including herbal pillows, relaxing clasical music, herbal sleep remedys, hot milky drinks.everything I could think off, but nothing worked. The problem led to serious anxiety attacks, which then led to severe clinical depression, for which I was prescibed anti depressants. My doctor at the time, said the start of the menopause could have caused the problems!! This all happened before BC. insomnia is a very distressing disorder, and the more you worry about it, the worse it becomes. These days I don’t worry about it and instead of clock watching, I turn the clock away so I can’t see it! Clearing the mind of everything also helps a lot, as a busy mind can hinder sleep. I still wake a lot, due to night sweats or feeling overheated which then makes me restless. But most times I drop off back to sleep in a few minutes. I can function on about 6 hours sleep, even when working.
I hope that you have another good nights kip tonight, and with luck your sleep problem will improve
Back to a crappy-ish night again last night. I have no idea what makes the difference - in fact, I’m beginning to suspect that whatever I do has no effect on the outcome. Why did I get good nights all last week and then suddenly on Sunday everything went pear-shaped? Why did I then get three bad nights followed by a good night on Wednesday and then a crap one again last night? I wish I knew.
I can really sympathise, I also had another crap night. But its due to night sweats and feeling overheated which then makes me restless, so I end up tossing and turning. I have also been suffering tendonitus in the arm for 6 months and the pain from that keeps waking me up!I have felt wrecked today at work.I do find that Valerian helps, but you have to take it for a week or so, before it starts working. I am going to try it again, as I am totally p****d off with having disturbed nights all the time. Especially having to do a physical job. Do you have trouble dropping off? Or do you, like me, go off ok, but just keep waking up through the night. The trouble is, it becomes a habit!
Sounds like you’re suffering more than me - I’m sorry that you’re getting pain as well as night sweats. It’s a miserable combination, and having to go to work after a crappy night or three isn’t much fun, is it? I can totally sympathise.
My worst nights are when I never seem to drop off - like you say, it becomes a vicious circle. The more you’re awake, the more frequent the sweats etc, and the more sweats you get, the harder it becomes to fall asleep.
My less-bad nights are when I keep waking up - I think, because I never get into a deep enough sleep. No idea what the answer is - wish I did, so I could share it with you.
Fingers crossed that we both have an okay night tonight. That said, I’ve got my sleeping pills to hand and, because it’s the weekend tomorrow, I won’t hesitate to take one even if it’s really late into the night. I can afford to be dopey tomorrow morning!
Thanks for the tip re. Valerian. Might give that a go if the sleeping pills don’t work for me.
Hope that you manage to have a decent nights kip, last night. I had a fairly good night for me. Probably slept through sheer tiredness! My arm didn’t play up too much. If the pain is bad, I take a couple of ibupafen, which take the edge off it. Though at 5 0’ clock this morning excruitating cramp in my leg work me up!! I can’t win can I?
Like you I keep waking up a lot in the night, Usually because of night sweats or a feeling of being overheated. I found insomnia a very lonely condition, as you feel that you are the only one awake, which make things worse. And the night seems endless and you are glad when its morning! Do you find that worry or stress at night brings on night sweats? When my arm plays up in the night it brings them on.
Try not to go down the road of sleeping pills. They are good in the short term, but not long term as your body gets used to them and thay won’t be so effective. Ive never taken them, only once, the night before my hysterectomy when I was a bit stressed!!
Do give valerian a go, but take them every night about half an hour before you go to bed. They do take a couple of weeks to get into the system though. But unlike sleeping pills thay are natural so are non addictive. Reading for a bit also helps if you have trouble dropping off, or if you’ve got an ipod, listening to some relaxing music.
I started taking them again last night, as they helped a bit before.
Glad you had a better night, Cynthia, though I’m sorry your nice sleep was broken by cramp - that’s just fair, is it? Mine wasn’t too bad, either - and I didn’t take a sleeping pill. I *am* really reluctant to use them, because, as you say, they’re no good in the long term. I’m much keener to find a natural solution. The theory I dreamt up last night while I was waiting for sleep was that I just have to get used to a different-sounding body - ie, if I can think of a thumping heart as totally normal and not at all distracting, then maybe I can drop off more easily. Trouble is, I’m terrible for sleeping in noisy conditions. Snoring and ticking clocks are guaranteed to keep me awake all night.
Worry or stress at night certainly does makes things worse! I do my best to keep calm and not think about much, but my mind keeps coming back to my body and whether or not my heart is thumping.
Oh, well. Two more nights of this and then I get to whinge at the radiotherapists about it all on Monday - I’ve got my planning appointment then. Think they’ll have the magic answer? Yeah, I know - not very likely. But a girl’s got to have hope…
After reading Cynthia’s comments above regarding Valerian, BCC would advise that you do not take any form of medication without first checking with your medical team.
Oh, Yvonne, it could be me speaking in your message! I was diagnosed ten years ago. Every alternative and complementary therapy invented, every form of relaxation and meditation, I tried it, it was useless. Three things helped me cope: sleeping pills, getting the temperature right and putting it in perspective.
I have to say the sleeping pills were the most effective. You’re right to be wary of them, since the effect can wear off so that you have to take more and more and can’t sleep without them, so what I used to do was allow myself one after three sleepless nights. I’d sleep like a log that night, and it would help me over the next three nights - it was something to look forward to. Mustn’t cheat, though - if you have a good night naturally, you have to start counting again!
Cooling down the room and bed helped. The lightest weight duvet then available (4.5 tog) was much too hot for me so I I had a 2.5 tog duvet specially made at John Lewis at incredible expense - you can get them easily and cheaply now, so we’re obviously not alone. Because my husband likes to be warmer, we went to two single duvets, with his much heavier than mine, instead of one double. And because he’s a saint, he’ll put up with no heating in the room and a portable air conditioner going full blast in summer (sorry, environment).
The perspective thing is interesting. It didn’t help me sleep, but it did stop me being miserable about it. I would ask myself why I was so bothered about not sleeping, and the answer was first that it was boring being awake (and how serious is that?) and second that it was being worried and upset about not being asleep that was the problem, not the being awake itself, if you see what I mean. So I made myself think about things I was going to do the next day, or what to give to people coming round for supper, or anything that would alleviate the boredom and stop me thinking about not being asleep. As I say, it didn’t put me to sleep, but it made being awake matter less.
The good news is that it does get better over time. In my case it was rather a long time and I still get the occasional hot flush at night, but I believe that most people improve rather more quickly. Hope all goes well with you - it WILL improve.
Wow, BixGray - lots of good advice there! Thanks. :)) I’m really pleased to hear that you did the three nights in a row thing with sleeping pills, because that’s *exactly* what I’ve been planning to do myself. So helpful to hear that it’s already worked for someone else. You’re right about the perspective, too - and now that I know I can get a fairly good night now and then (last night was pretty darn good, for example), I’m becoming less bothered about the sleepless ones.
On the plus side, this entire experience seems to have done wonders for my metabolism - ie, I seem to be able to eat a lot more ‘naughty’ things these days and not put on weight. Maybe it’s all the sweating I do!
I don’t think I’ll go to the lengths of having a special duvet made, as when I’m cold, I need all 12 of my togs to keep me warm. I’ll just keep throwing it off when things get really unpleasant.
Jo, I did ask for my doctor’s opinion on some herbal sleeping pills I bought from Boots. His response was, “Well, frankly, I have no idea. If you’re having that much trouble sleeping, why not try a sleeping pill?” To be honest, though, I did tell him I was a sceptic so far as alternative medicine is concerned, so he already knew I wasn’t keen on them before he gave that response.
Hi Yvonne, yes Jo’s right, do ask your BC team about Valerian. Its a real pain with this b****y disease that you have to be so careful what you eat or drink as it either increases re occurance of the bc or reacts with the meds we have to take!! I will be seeing the onc on the 12th of Feb so I will mention it to him then.
You are so lucky being able to eat what you like. I used to be able to, before all this. Since my hysterectomy last Feb I have put on a stone! I only have to look at a chocolate and I put on weight!! I still have treats though. I have just cut down to smaller portions and cut certain things like biscuits etc out of my diet. I have lost a couple of pounds
By the way I had another fairly good nights kip. Glad you did?
A couple of months ago I spotted a tiny ad in a mag, A clinic in Harley Street were asking people with sleep problems, to take part in a 4 week trial, to try natural reflexology patches, which every night before you went to bed, you stuck on the soles of your feet! I took part in it and it was all done online. They sent the patches and before during and after you filled in a questionaire and emailed it back to them. Half the patches that were sent out were placebos so you didn’t know which ones you were getting. Anyway they did help after I’d been taking part in the trial a couple of weeks. I seemed to be waking up less often. They are going to send me a complementry supply of these patches. I’ll try anything now, as I’m really p***d
off now after 4 years of mostly very disturbed nights, especially having to get up for work everyday. I don’t know when these patches will be on general sale.
Good luck with your appointment with the radiotherapists tomorrow,
Hey, Cynthia! Two goodish nights in a row - congratulations! re. weight loss - yes, smaller portion sizes are a really good way to go, in my experience. That, plus reducing the treats (alcohol and chocolate), helped me lose a stone over roughly a year. Of course, then I had to go and get breast cancer, which kind of made the dieting seem like a waste of effort - ie, life then became a battle to maintain a decent weight despite having all sorts of problems with eating due to chemo.
Those patches sound weird! Can’t see how they could work, but hey, if they make a difference for you, then go for it. Meanwhile, I hope you get a third good night.
BixGray, one thing that’s put me off taking sleeping pills is worrying that I’ll wake up dopey the next day and not be able to go to work. What was your experience with this?
Hi, Yvonne. Glad to hear you had a decent night at last. Hope it’s the first of many! Like you, I was worried about being dopey next day, and I asked my GP to prescribe the pills least likely to do this. She gave me Zopiclone (that’s the generic name, I think there are several different brand names) at a very low dose, 3.75 mg, which I think is half the normal dose as the leaflet talks about 7.5 mg. I’ve found that it works very well and doesn’t leave me at all dopey.
I do envy you the ability to eat wickedly - I PILED the weight on and couldn’t lose it while I was on tamoxifen (is this the most hated medication in the world, I ask?). Managed to lose some of it when I stopped after 4 years, but it was a hard slog.
For pretty sound advice on herbal medicines try mskcc.org/mskcc/html/11570.cfm (Memorial Sloan Kettering Cancer Centre) - it’s an American site that gives a good evidence-based rundown on a huge number of herbs, for professionals and consumers. I always get a bit irritated (sorry, Jo) when we’re advised to ask our doctors about what to take, as most of them know NOTHING about herbs, so the only advice they can give is ‘don’t’ (which admittedly is probably the most sensible). I got interested in this after taking black cohosh for hot flushes and then finding that there’s a big question mark over whether it’s safe if you’ve had oestrogen receptor positive breast cancer. And it didn’t work anyway. Huh.
Fingers crossed for you and Cynthia tonight!
Like you I have been having trouble sleeping since being on tamixofen however had not narrowed it down to what it was, so thanks at least i know now that i am not going mad !! I slept like a baby after my op even though I was in great pain and discomfort. I have never had trouble seeping in the past in fact my husband used to joke that I could fall asleep at a drop of a hat. Now I have many nights tossing and turning, I try not to let it get to me and often get up and have a cup of valerian tea. That would always cure me but now a days it a bit of a lottery. I am concerned though that although I cope with it now it will become a problem when I go back to work. I am currently still off work as in the middle of rads I have a very stressfull job and the thought of managing without many nights sleep is quite scary, I already do most of the suggestions from Bixray ie cool room and try not to get worked up about it but sitll often I am wide awake when my husands alarm goes off, I just hope my employees are sympathetic when I eventually return to work.
I am cocnerned that once back at work everyone will think I am ‘cured’ and will not have an understanding that the side affects of the medication will go on for many years. What is the experience of other BC survivers when they eventually return to work ?
