Sleep - I miss it so much!

[Traveller66]

Happy Easter- hope everyone is coping with this prolonged isolation- I feel pretty low at present even though I know I should be very grateful that my breast cancer was caught early and that after a lumpectomy with clear margins in October I didn’t need chemotherapy. The treatment I was prescribed is tamoxifen which I have been taking for 4 months-lots of hot flashes but the worst side effect has been insomnia as I have been dealing with persistent lack of sleep for many months and it really is hard to feel optimistic in the midst of a pandemic lockdown with very little sleep- I have tried melatonin, valerian and l- theanine in varying combinations with little help plus have tried prescription sleep meds which do work but leave me pretty drowsy the next day and I have been warned are habit forming. Feeling desperate tiredness is my new normal presently. I wonder if anyone else has experienced this and has suggestions on how to cope? I feel pretty bad complaining on this forum as I know there are many who are dealing with chemotherapy challenges in the midst of a pandemic- but I feel so anxious it is a comfort just putting it out there. Stay safe everyone!

[Happyrosie]

I have such sympathy for you! Whilst I’ve never been on your particular drug I certainly have insomnia. And night sweats which don’t help!

Three things I find helpful

- exercising more. There’s quite a few videos around which you may find of use. As I’m 73 with arthritis the majority of these are far too strenuous or long for me. There are probably Pilates and yoga videos on UTube. A source of help for exercise might be the NHS website.

- When I can’t sleep, after an hour I get up and read for an hour, then back to bed.

- think of three things that have gone well the previous day, or week.

I wish you well

[Traveller66 in reply to Happyrosie]

Thanks for your insights- Nice to know I’m not the only one!

[1964-karina]

Hi, like you I was very lucky clear margins and tamoxifen, I have been on tamoxifen for about 9 months now and I think the symptoms are lessening slightly. I have less hot flushes than I used to and some better nights sleep. Which tamoxifen brand are you taking? Some people have found different brands to be better for them. Take care am always here if you need to chat x

[Winnie13 in reply to 1964-karina]

Hi Karina, how are you? Are you still on the Tilomed? I moved to Wockhardt which has massively improved my symptoms. Xxxxx

[1964-karina in reply to Winnie13]

Yep still on the tilomed, still a few hot flushes but nothing as bad as it was! How are you keeping? Xxx

[Winnie13 in reply to 1964-karina]

I don’t have any night sweats now and I’m sleeping like a baby. It is incredible how different the brands can make you feel. My pharmacy can’t get hold of Tilomed now so I’m now on Wockhardt. I’ve got a bit of joint pain but it doesn’t affect my sleep. I’m chuffed. Xxxx

[1964-karina in reply to Winnie13]

Am so happy for you! Take care of yourself, lovely to speak to you xxx

[Ourmeg]

Hi there,

I'm so sorry that you are not sleeping well. I echo what Happyrosie said. I never look at the clock if I wake up as psychologically it doesn't help to know the hour or how long you have been awake. I take letrozole and have had my ovaries removed. I was pre-menopausale before bc diagnosis so has all been a shock to the system to say the least. Through Breast Cancer Haven, I was lucky enough to have an appointment with a medical herbalist. I listed my symptoms including reflux, hot flushes, joint and bone pain. Oh hot flushes are easy, was her reply! I was sceptical but I cannot tell you how much difference this has made. I'm down from about 15 - 20 flushes a day to maybe one or two. No reflux at all and the pain is no longer bad enough to wake me. I am on a very low benefits income but I prioritise this treatment alongside good nutrition and exercise as it makes it all bearable.

Do not despair. There are solutions and help out there x

[Ellymay46]

Hello.

I have now been on Tamoxifen for nearly 5 years. I had a mastectomy with immediate implant reconstruction. No chemo or radio. I have struggled with the side effects most of the time. They come and go and the hot flushes range from slight heat to unbearable. I find they go in phases you get months they are not too bad then months like now when they are horrible.

My sleep has been interrupted by being either freezing cold and shivering to boiling hot. I can flick from one to the other by just turning over in bed. I don’t have any real answers for you I’m afraid. Try to keep the same schedule for your sleep everyday. Don’t vary it at the weekend. Do as much exercise as you are able to. Easier said than done but try not to worry about it as that will keep you awake. My other half does shifts and when he has to get up very early he can never sleep the night before, it’s all in his mind.

I am really struggling with the isolation as well. I have anxiety and this is not helping one little bit!

I have tried splitting the dose. 10 mg morning and night. Unfortunately this has had no impact on my symptoms at all. I know some people have found this has helped. I take wockhadt and have done the whole way through.

There have been times when I wavered about taking this but the thought of the benefits kept me going. Also it stopped my periods and as they were really bad then that was also a reason to keep going. Not sure how long will be taking this for but am worried what will happen when I stop. I’m 47 now so not sure if will be post menopausal when finish...

Ourmeg I would be interested in how you have managed to reduce your hot flushes to the levels you have.

Take care everyone we will get through this.

[Ourmeg in reply to Ellymay46]

It's purely the herbal meds! I promise you I'm not on commission but the mix she made for me has done wonders.

[Bethjones]

Hi, I first started tamoxifen about 5 years ago. And like you struggled with the side effects especially the insomnia and the flushes. My solution to the insomnia was to take the tamoxifen in the morning as soon as you get up., this lessened the insomnia and I continue to benefit and sleep a good 6 to 7 hours.

Also I have noticed that exercise helps, it doesn’t have to be for hours., a 20 min walk even helps.

Hope you are feeling ok and good luck xxx

[Tennis66]

Hi,

Like you I was lucky that they caught my cancer early. I had a mastectomy and didn't need to have chemotherapy and radiotherapy. I have been taking tamoxifen for 18 months now and can really relate to what you are going through.

The early days was very difficult to adjust but it does get better with time.

I would recommend the below:

Learn to relax - Have a good bedtime routine. No caffeine, sugar or heavy meals too late in the evening. Relax with a warm bath or shower and read a book before bedtime. Avoid using your phone or tablets as the blue light affects levels of your sleep at twice the levels of warm light.

Exercise more and keep busy. Try yoga for relaxation and exercise for well being. I know it's difficult at the moment but try the on-line classes as well as walking daily.

Sleep - get it when you can. I tried in the early days to sleep as my previous pattern. I found I had very little sleep (2 - 3 hours a night). I am so tired now by 9.30pm that I doze off for at least an hour. I know that I don't sleep through the night but sleeping when I can calculate that I get about 6 -7 broken hours of sleep!

Try and keep to one brand of tamoxifen. I have asked my local chemist to try and get me Wockhardt. It works for me and I have been lucky to get this every time so far.

Take care of yourself and I am here if you need anything. xx

[Traveller66]

Thanks for yr suggestions- we don’t get a choice of Tamoxifen here in Canada/ shortages at the moment- my oncologist recommended Nolvadex and aside from that brand there is generic Tamoxifen citrate- no specific brand just loose pills in a bottle not enclosed in push through foil like the Nolvadex- I am pretty sure the lack of estrogen is the cause of my lack of decent sleep but not much I can do about that- in starving the potential cancer cells of fuel the rest of the body suffers deprivation too.

I have had a few fantastic nights of great sleep with Zopiclone- sleeping pills but this is not a permanent solution - I was just so exhausted I had to contact my family doctor for some respite/ I dread the nights.

Getting lots of walking exercise in- but despite being tired in body my brain seems to have lost the capacity to signal sleepiness and allow me to lose consciousness. I do have some night sweats but don’t think they are the major problem for sleep.

Really appreciate yr suggestions- hope you are keeping positive in the midst of our new pandemic version of normal

[Kthespeechy]

drnerinamuses.com I can't recommend Dr Nerina's advice highly enough. I met her at a BCH sleep workshop. I have her book, she has numerous videos and is doing webinars, the first one was free. I'll PM you about that.

silentnight.co.uk/sleep-mat... and lots in you tube.

Bless you! Don't lose Hope x

[Kthespeechy]

youtu.be/QBiYgA9N_jU(Not working as expected?) discovered webinar is on you tube, so don't need to PM you.

Do email her , she's very helpful and approachable x