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I want my sleep back! (or, I hate Tamoxifen!)

36 REPLIES 36
Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Thanks Yvonne. I'm going to ring them tues for results. I know that I'm worrying unnecessarily about lump. But there definately feels like a lump there. I mentioned it to the doc and he felt it and the other arm,but said it could be muscle inflammation. He's probably right. The steriod injections have helped with the pain, but it still gives me gip at night. Hope everything ok with you, and that your still having good nights kips:-) Are you still having palpitations, or have they eased off now? It could have been the worry and stress that caused them,

Cynthia
xx

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Well, I'll keep my fingers crossed for you, Cynthia. In the meantime, try not to fret too much about that lump - it's probably nothing to do with cancer. I mean, it's not really in the right place, is it? If it was a new primary, it would be in your breast or your armpit, and if it was a secondary, it would most likely be somewhere else entirely.

Yvonne

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Yvonne,

Things going fairly well, thanks. Hope that they are with you.Sorry you had a crap night. But glad your having better nights now. I've had fairly good nights, but still being woken in night by either the urge to go for a pee, night sweats or my shoulder giving me gip!!! The Steriod injections helped take the edge off it at first, but the effects seem to be wearing off already! I hav'nt had my X ray results yet. I'm going to ring the docs tuesday as I've got to go back to see him. I expect they may send me for a scan, as its not improving at all. I was worried because I could feel a lump in my upper arm, and as with all us that have suffered bc you get paranoid about every lump and bump!

Cynthia
xx

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hey Cynthia and others - how's it going? I had a crappy night a couple of days ago but otherwise I'm sleeping well. Cynthia, I hope those steroid injections work for you. What news from the hospital appointment?

Milli, I haven't experienced problems with my good boob, so I'm afraid I can't offer any helpful insights.

Yvonne

milli
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Started taking tamoxifen a fortnight ago and no obvious side effects yet but they may take a while but I had been taking a mulit vit/mineral and evening primrose since Christmas so maybe these are helping?
But I have noticed my 'good boob' feels swollen and sore so don't know if this is my hormones on the change? I'm 43. Has anyone else experience this?
Milli

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Yvonne, Congrats on having four good nights in a row! I spoke to soon, had a rough night the other night, but thats mainly due to my arm prob and night sweats! I have had to have another 2 steriod injections in my shoulder to see if it helps, the first one had no affect at all! Got to go to hospital to have another x ray as I have been suffering with it for 7 months now.

Thats good also, that your palpitation attacks are easing up. Do you think it could be worrying about stuff that kept causing them, as it can be a vicious circle. Anyway I hope that things keep improving for you

Cynthia
xx

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

I've now had four good nights in a row! Yippee! And congrats, Cynthia, on your four good nights. Maybe we've both cracked it at last?

I hesitate to say this - I don't want to tempt fate - but I think the palpitations are calming down. Yippee again.

Yvonne

jools
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Have you tried getting a chillow pillow
Its really worked for me. They are about £25 but well worth it. it cools me down whilst in bed. Its a bid of a shock at first but you get used to it. Also have layers of bed clothes which i can take off/put on depending on my temp. Can't sleep on my left side as have bone mets in hip so too painful
I also take sleeping pills but not every night. I have to get my son to school every day so paranoid about sleeping throught the alarm. So normally take them Fri/Sat night when hubby is around to look after son

Jools

techy
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi to all suffering from these wretched sideeffects,
Its 3 and a half weeks since I started taking vitamin e (400 IU) and evening primrose. The effects for me are phenomenal, I am now sleeping through, except for the 3 days preceding a period. But the 6 or 7 flushes that I have had are so much less intense than they used to, I had 6 months of constant flushes and no sleep.
The vitamin / nutrition books I've read have said that as well as being an antioxident, vit e lowers your blood pressure, like clondine that is prescribed for flushes. It has really worked for me, fingers crossed its not a flash in the pan, Life is beginning to feel doable again!
claire

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Yvonne, Hope that you are still sleeping ok!! Ive had 4 fairly good nights in a row now, which is brill. The sleep advice and tips that I said I'd post for you and Jo are to many to list, but if you or Jo are interested in the book its called: Sleep Soundly by Barbara L Heller. You can find it on Amazon- New or used, prices are from £1.14. Its a very informative book, everything you need to know about sleep probs. Advice and tips on how to get a good nights kip. tips from fellow insomniacs, Alternative remedies etc..

Are you still suffering from palpitations? It could be the hormone drugs that you are on. How long have you been suffering from the palpitaions? If you only get them at night, I'd say that its anxiety causing them. Perhaps councelling would help. If you have a lot of things that you have been worrying about, including all what you've been through with the cancer and not sleeping etc.. I think that its important to get to the bottom of whats causing the palpitations. I know how distressing they can be!

The weather at the weekend was ideal for walking. Almost Springlike. We went for a walk and there was lots of daffs etc in flower, birds were singing. Things like that make you appreciate life, don't they?

Take care,

Cynthia
xx

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

LOL, Cynthia! Yes, I had a CT scan but no-one accused me of being pregnant - mind you, maybe they knew about my hysterectomy a few years ago, so knew not to ask.

I've now had three good nights in a row! I'm chuffed. Could it be I'm starting to get this thing under control? Let's see what tonight brings...

I've decided, unless I get any serious scares, to put up with the palpitations until the end of radiotherapy and then, if they're still bothering me a lot, I'll raise it again with the oncologist and/or my GP. As you say, Cynthia, if I'm not getting any symptoms (other than lack of sleep!), then I guess there's not much to worry about. There's also the promise of an ECG from my oncologist if I give her any cause for concern, so that's good to know.

Meanwhile, I went for a 4 mile hike today in the glorious sunshine. I reckon if I can do that without keeling over, then I'm probably not at death's door!

Hope you've had some good nights, Cynthia - and you, too, Jo.

Yvonne

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Yvonne, hows it going? Hope you been managing to sleep ok!! I woke in the night to a horrendous night sweat. I couldn't seem to cool down. Night before, my arm was ok, but about 4ish my back was hurting!! Last night apart from the night sweat from hell I slept quite well.

Concerning your palpitations. The docs wern't probably too worried as you had no symptoms. My doc a few years ago did send me for a ECG which didn't show anything amiss. Have you had an ECG? How long do your palpitation attacks last. The more anxious you are about them the longer they will go on for. Is it just at night you get them. It seems to be either the sleep prob causing them or the palpitations are causing the sleep prob. But I reckon anxiety is at the bottom of it. It's a vicious circle. If you report it again to docs, I think they may suggest putting you on beta blockers! Anyway I hope that you get it sorted.

Glad your radiotherapy appointment went ok. I know what you mean about laying on a table half naked, with four people standing round you, while one of them is drawing all over your boobs!! Did you have to have a ct scan while you were in there? The radiographer came back in and said 'is it possible you may be pregnant??' I looked at her in horror and replied ' I sincerely hope not at my age (54)!!!' She said we have to ask all women under 56 years old!!

When I find my sleep book, I will see if I can find any good sleep tips and post them on here for you and Jo.

Take care,

Cynthia
xx

joanne2
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

great that the sleeping pills work it is something i would never have considered in a million years before tamoxifen but think if this continues once I am back at work I will pay a visit to the doctors. The three night rule seems good.

I know what you mean yvonne about the radiotherapy treatment I have just got back from mine only 6 to go now. when I first went I found it the most uncomfortable thing I have ever done, lying half naked arms above the head ect, at times no one even acknowledges me !! However I am now in the flow of things it amazes me how adaptable us humans are. I have an appointment tomorrow to be re aligned for my booster set. The onc always tries to discuss my treatment with me whilst on the bed. I feel like saying that I would rather have a face to face discussion with him whilst I am dressed, it feels so demoralising. Theres more to this BC than I first thought !

take care

Jo

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hooray for sleeping pills! I took my first ever last night and had a wonderful night - the kind of unbroken sleep I used to enjoy pre-Taxoxifen. I feel so much better today - not just less tired, but also I haven't noticed any weird thumping from my heart all morning. I'm definitely going to adopt the three-night rule on the strength of last night's experiment.

Congrats, Jo and Cynthia, on your good nights. I know what you mean about dreading going to bed, Jo, but hopefully after last night's success, you'll feel less apprehensive tonight.

Cynthia, I've mentioned the palpitations both to my GP and, yesterday, my oncologist. Neither seemed too bothered, though they said if it continues, I should tell them. Continues for how long? It's already been happening since just before Christmas, so how long do I wait before I tell them "it's continuing..."

Oh, and the radiotherapy appointment was fine. Well, fine, if you can call lying half-naked on a table in a freezing room while people in white coats write on you fine! Rads themselves start in two weeks...

Yvonne

joanne2
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

YES i slept too last night Sorry Yvonne although this was after 3 nights of not sleeping. I was dreading going to bed. I got my husband to massage my feet just before going to bed, then my arm and hand (the side of the op) whilst he was watching tv in bed then my back !! ( he has the patients of a saint) I had a doubel valerien tea kicked the cat off the bed ( he was not amused) and slept like a baby, feel so much better today. not sure how long it will last jsut have to take every night as it comes. Would welcome any tips from your book Cynthia.

Jo

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Yvonne,

Sorry to hear you had crap night. I had, for me, a good night again. Hey, thats 3 fairly good nights in a row. It can't last! Perhaps the Valerian tabs are helping! Those reflexology patches felt really strange stuck on my feet all night, as they were quite big!
Have you mentioned to your doc about your palpitations? They shouldn't go on all night like that. Unless you are suffering extreme stress. Which you could be, as you have been through a lot with this awful disease. And not sleeping is also stressful in its self, Its a vicious circle. When I was suffering from anxiety attacks, I'd get very bad palpitations. amongst other unpleasent symtoms. Insomnia is actually a symptom of the menopause. I used to sleep really well before the menopause started. And of course the hormone tablets don't help you younger ladies as they cause menopausal symptoms!
I get so tired sometimes that when I have a bath, I drop off to sleep!!
Have you tried meditation or yoga? They are suppose to be very relaxing. I have a sleep book which I bought when I was really suffering from bad nights, I'll have a browse through it and see if there is any good tips, and I'll post them on here for you,

Hope your appointment went ok today,

I hope you have a much better night, tonight

Cynthia
xx

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Crappy, crappy night last night. I went to bed very happy, yawning my head off, and thus positive I'd sleep well - but no. I got two hours of dozing lightly, followed by about an hour battling with indigestion (why??? I only had some tomato soup and some chocolate ice cream for dinner), by which time my heart was going like the clappers and didn't shut up until the alarm went at 7am. Oh, and I think I counted 8 hot flushes.

Argh!!!!!!!!!!!!

Jo, I totally understand your worries. I think it all depends on how understanding your employers and colleagues are. I'm very lucky in that respect. Just about everyone at work is very supportive, perhaps partly because we had a much-loved colleague who died last year of ovarian cancer - just a few days before I was diagnosed. Really, I think most people are very sympathetic if they know you have or have had cancer.

Yvonne

joanne2
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Yvonne

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 ?

Jo

BixGray
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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 http://www.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!

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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?

Yvonne

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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,

Cynthia
xx

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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.

Yvonne

BixGray
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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.

Jo_BCC
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Yvonne

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.

Kind regards
Jo, Facilitator

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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...

Yvonne

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Yvonne,

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.

Hope you have a good night tonight,

Cynthia xx

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hi Cynthia,

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.

Yvonne

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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!

Cynthia

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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.

Yvonne

Cynthia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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

All the best,

Cynthia
xx

ForumMember
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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.

Thanks for all your sympathy - it really helps. 🙂

Yvonne

Topper
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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!!!!!

olivia07
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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.

Dahlia
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

Hm

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.

Anyone out there with knowledge on such matters?

techy
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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

Jacksy
Member

Re: I want my sleep back! (or, I hate Tamoxifen!)

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

ForumMember
Member

I want my sleep back! (or, I hate Tamoxifen!)

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!