I have just started Tamoxifen and am only 2 weeks into it but already am waking in the night and am feeling fatigued today. I suppose I havent been on it long enough to judge but I will keep you posted. I have known people on it and they havent mentioned this. Perhaps we can blame any ache, pain, insomnia on it but without it we may have been feeling the same anyway. Who knows? Ann xx
I’m like you and also on tamoxifen. I am 1 year and 1 month past active treatment - so very similar. I haven’t slept properly for ages but it’s got far worse the past few months.
I also worry about driving and frequently don’t. I have difficulty in concentrating and feel tired all the time. I do have hot flushes but usually only during the night. I also get headaches, thankfully brain CT was normal so I think it’s possibly linked to menopause (I’m 46) or tamoxifen.
I was self employed before my diagnosis but haven’t been able to return to it as I’m not up to the job. I would say that before all this I was pretty much a workaholic and had a demanding job.
I am sure it is the tamoxifen but I have no evidence of it.
Although I wouldn’t wish this on anyone, it is a relief to know someone else feels the same. I keep feeling as though I am somehow being weak but I’ve never been like this in my life.
Hi All I just wanted to say I was so relieved when I read this as I too am taking tamoixfen and having monthly zoladex injections and I have real trouble sleeping, sometimes I only get 2 or 3 hours a night which really isnt enough as I have 4 children aged 8 and under and I need all the energy I can gather to get through my very hectic day. I have also recently been having itching fits from my hands to my feet and now my ears and neck??? I havent changed anything eg diet washing powder etc so I was wondering if my meds had anything to do with it.
Hallo fellow insomniacs,
Im the same as you ladies-Ive had several years of poor sleeping and am a light sleeper when I do. But I def agree that the Tamoxifen has had a major impact on my sleep since starting a year ago. As Julie says, average of 3 hrs a night is just too hard to manage on.
I asked GP in desperation for something to help and got an anti-anxiety tablet called trazadone and worked up to 150 mg, one at night.
This still hasnt really helped, I just feel so foggy and days when I start work early are just awful(and I worry about driving)
So went back to GP yesterday determined to get this sorted, only to come away with a 300mg dose per day!!
He says that my situation-can get to sleep but wake and cant get back- is symptomatic of low mood.
My sis is a psychiatric nurse in a ward for older people and was totally shocked this was recommended as she uses it for very agitated dementia patients and says she would be even more worried about me driving while on it. Doc says to take at teatime and I feel that my quality of life would be worse with the regime.
So Im afraid Ive got no answer either but intend to chat with my surgeon next week for a poss alternative to Tamox.
Take care all,
Love Cathie x
Yep, here’s another one!
I usually get to sleep OK initially but then wake up 2 or 3 times later on, and sometimes can’t get back to sleep for hours. It didn’t matter so much whilst I was still off sick, but now I’m back at work it’s becoming a problem. I’m seeing my GP next week and intend to ask if she can offer any help.
I was experiencing very similar problems when I started heading for the natural menopause, which is why I started on HRT, but of course as soon as I was diagnosed with an ER+ BC, that had to stop. Now I’m on Tamoxifen and Zoldadex, so I presume it’s the loss of oestrogen that causes the disturbed sleep patterns.
Can anybody out there tell us if it improves with time or do we have to start working our way through the pharmacy to find something that deals with it?
Sarah x
I have just been to my GP this morning about this. I came away with a 2 week supply of zoplicone (not sure of spelling). Don’t think this will help long term but will help me short term in that I won’t be walking around in that exhausted fog. I have just gone back to work and find it hard to get up in the morning after being awake since 3/4am.
My sleep has been bad since diagnosis and wasn’t especially great before. I don’t blame the tamoxifen though, I think it is anxiety and doc agreed. I have been diagnosed with BRCA 2 and I’m having my ovaries removed on the 28th and will have another mx this year. I’m hoping that after these ops I might get a reduction in my anxiety levels. Who knows. I am so looking forward to getting a solid 6/7 hours sleep.
Same problem here, very empathetic GP prescribed Amitriptyline 10mg at teatime. Only got it this week and will try at weekend to see how it works. This waking at 3am is driving me mad! X
I had 3 months of bad sleeping and a constant feeling of low-level anxiety when I first started tamoxifen. The lack of sleep was hideous to the point I wanted to give up tamox.
However, after 3 or so months I began sleeping again. It may have been a coincidence, but I started doing very relaxing, spiritual yoga and also power walking and my sleep improved overnight (poor joke, I know). Also, now if I do wake up I am pretty good at doing breathing relaxations to help me back to sleep.
Lack of sleep is debilitating. Julie, I don’t know how you do it with 4 young children to contend with!
I’m already on 20mg Amitriptyline (at bedtime, not teatime) to deal with hot flushes and night sweats and when I tried to manage without it they got worse, so it must be helping, but not enough. My GP offered me Citalopram but when I read the list of possible SEs I said no thanks, particularly since I’m not depressive, in fact generally quite cheerful despite the lack of sleep!
Sarah x
Problem is i have a 3 and 2 yr old and this continual waking and continual tiredness is doing my head in! Doubt in this state i would be able to work but i really really miss it.
I do feel like i am moaning but psychologically i think ive done quite well coping with cancer and it irritates me ALOT that ive survived it to now live like a tired, grumpy, fog headed, clumsy idiot! my memory is rubbish!
Balooby 10- one brand of tamoxifen made me itch all over for the month i took it- Generic i think it was. Stopped when i changed brand.
Hello ladies
Good to know I am not alone but would not wish this on anyone. I went onto Tamoxifen about 11 months ago. I too have not had a full nights sleep. My job is very demanding and to be honest I am struggling like mad to cope.
I take Amytripteline about 2 hours before bed. It’s ok and I do get to sleep but still wake several times a night. Hot flushes and general restlessness. Always feels worse in the middle of the night which perhaps explains why my GP thinks I am doing really well - I see him during the day!!!
Love to all
Cory
I have been taking Tamoxifen since Sept and have a similar experience. The hot flushes at night are decreasing in frequency and intensity but are still there. When I was first diagnosed one doctor suggested melatonin to help me sleep. Take an hour before you go to bed. I stopped taking it but have recently started again and it seems to help. While I still wake up because I am hot I am not awake for hours - I can back to sleep. It might be worth trying.
I have been on tamoxifen since June last year. I have nightly hot flushes (drenchings would be more precise!). This occurs 3 or 4 times a night. I read in an article the time you take the medication could be a factor - so I have recently started taking at night rather than morning - but can’t as yet see a difference. I went back to work this week following my WLE and rads last year but am worried about my energy levels due to interruptions to sleep.
Have you heard of the “Lady Care Magnet”. These can be bought over the counter in Boots etc. and are designed for menapause - however there is a mention of tamoxifen in the literature which accompanies it - so I am trying that too.
reading everyones comments i am relieved to find that i am not alone. Been on tamoxifen since aug and still having herceptin every three weeks. I was told tiredness etc would ease off after six months, but i think it is getting worse. I havent had a full nights sleep in twelve months, sweats and anxiety every night, but worst of all are the aching joints and headaches. I take paracetamol and ibuprofen every day and in the last few weeks, every four hours in the day. I thought when i returned to work everything would be back to ‘normal’ but i find it harder to cope each day. I have just also nursed my sister in law in her final days with lung cancer aged 51. She passed away on 20th Dec and i was with her. I think this is now telling on me and my restlessness is down to that. Does anyone else have the aching joints or should i see my doctor.
I have the aching joints, but not to the point of needing painkillers. I just find I stiffen up if I sit still for too long, but am ok if I keep moving about.
And, as you can see from the timing of this post, not sleeping. I used to be a great sleeper, even in very stressful times, but lately cannot get to sleep at all. Often, it is caused by the all over itching, mostly legs, often arms too. Tonight I have been itching for a good two hours, which is the worst it’s ever been.
I think it’s just about stopped now…
I get hot flushes, usually kicked off by coming into contact with something hot, but it doesn’t usually wake me.
Right. Must try to sleep now. Have to be up for work in 4 hours time…
You might find some help with a low dose of amytriptylin (sp?) which is an anti-depressant that has the side-effect of reducing the severity of hot flushes. I was prescribed it a few years ago to help me sleep as well. Worth a try if the lack of sleep is causing you ongoing distress.