Hi all, Does anyone suffer really bad insomnia? If so what do you take for it and do you recommend? At first i was given zopiclone ( via cancer clinic and prescribed by local doctor) which worked well if i only took it at weekends as with continued use the efficiency wears off. However, my doctor stopped it he said I should not be on it even though it was suggested by my oncology nurse and put me on mirtazapine. I tried it for 6 months but it was of very little help. I was then given promethazine which is useless.
It takes me ages to fall asleep and even then i dont stay asleep. I am still working so i am constantly tired from lack of decent sleep though i love working. Im lucky its office work and i am Self employed
I have tried the magnesium spray and butter. I am seeing my doctor again this week for a review.
To be honest im cheesed off that they stopped the original meds because at least then i could get at least one or two good nights but the doctor’s seem loathe to prescribe it.
Hello,
I struggle a lot too- hence being here at 2 30am! Why did they stop the zopiclone?
I have tried promethazine too but it quickly wore off. Post surgery I’ve been rolling with the codeine but know this isn’t long term.
Nytol from behind the counter has helped me in the past but not sure it would hit the spot now & appreciate how desperate it can get & how hard it is to get meds from the gp.
Fingers crossed you get some rest soon. Xx
Hiya
Thankyou for your reply.
Nytol has no effect either. The doctor who stopped the Zopiclone mumbled about it being for old people. He said my symptoms were psychosomatic !! He put me on mirtazapine which was useless really.
I have tried yoga and sleep apps. I am quite active too. I am really getting desperate. 
I understand- me too.
Hopefully someone will come back soon with some suggestions. 
Dear @jackbaz, I developed chronic insomnia on Letrozole. Research showed me that the best treatment is CBTi which stands for cognitive behaviour therapy for insomnia. You can access this immediately and free of charge via the app Onboarding Sleep Test - Sleepio. I followed the programme for many months whilst waiting for my GP referral to the NHS sleep clinic at the Royal London Hospital for Integrated Medicine. The sleep clinic was a weekly group programme run by a doctor who stayed behind after each session to answer any questions on a one to one basis. She also prescribed medications where appropriate for immediate collection at the on site pharmacy. Individuals who could not get to sleep in the first place were usually prescribed Melatonin. My issue was not dropping off but waking every two hours and then waking much too early. I was offered a different new medication, Daridorexant, designed for people who can drop off but keep waking up. I chose not to take it because I have type I diabetes and need to hear my glucose alarm if it goes off in the night. The CBTI programme is tough. You start by keeping a sleep diary to see how much sleep you are getting in a night averaged over a week ( I started at 4 and a half hours in December 2024). You then set a wake up time and only go to bed at a time to match your average sleep time but with a minimum time of 5 hours. You follow this strict regime until you achieve a sleep efficiency of 90% or greater at which point you can extend your sleep time by 15mins. The programme teaches techniques to help sleep and also how to stay awake! There are rules to follow. It is tough and can take months to fix although one of my classmates, who couldnt get to sleep saw amazing improvements after just 2 weeks of sleep restriction. In my case it has taken me 9 months to improve from 4 and a half hours to 7 hours a night. I can now sleep for longer, 4 and a half hours, instead of 2 hours, before waking up and still wake about 5am. The important thing is consistency. I am a morning person so my current schedule is 10.15pm to 6.15am but natural night owls would likely choose a later bedtime and rising time. Sleep is so important in our recovery so is definately a priority for fixing. Love Tulip x
Hi @jackbaz
I had really bad insomnia so when I saw the menopause specialist they prescribed me daridorexant. It has been a life saver for me. They started me on the 50mg but that wiped me out and I felt like a zombie so they reduced it to 25mg. I sleep very well most nights now. Have the occasional bad one but not very often at all. I like that they are not addictive as well were as I think the zopiclone might be. Might be worth asking if they can prescribe it. I know not all areas of the country do but you would have to ask for your area. The area I live in doesn’t but the nhs menopause clinic I go to does.
Hope you can get something to help you soon as I know how horrible it is not being able to sleep 
Hi @jackbaz
There’s a book called Hack Your Hormones by Davinia Taylor. I bought it curious how it could help me, following a friend telling me how interesting it was and me being a bit of mess still with menopause symptoms. It is really informative and it does discuss food, timings and routines and how it affects sleep and energy, brain fog etc. it would definitely be worth you reading it to see what you maybe able to do naturally that will help you.
Best ÂŁ8 I have spent.
Take care xx
I was given zopiclone for a short time too as it is habit forming. I then started using an antihistamine med which causes drowsiness available off prescription chlorphenamine I think it’s called.
I started doing mindfulness which helped a lot to calm me. Then also go to bed tired so do a lot of exercise, gardening, walking, carrying compost bags around so you are ready to sleep. Have blackout curtains and do nothing else in your bedroom except sleep. You may end up having sex from chandeliers in the living room but nowhere in the bedroom.
Seagulls
Never been great at going to sleep. Always took me an hour or 2. What I was good at was staying asleep once I got there. Not anymore, however, I do have strategy for going to sleep. Worked out music is bad - too onto it, and take too much notice to sleep. Background chatter though, works for me, especially if it is of interest to start with, as it stops me thinking about my own stuff. So I go to bed listening to podcasts at night, every night, without fail- its become habit. Tbh, its a comfort as my main issue the last couple of years has been leg pains at night on top - not agony, and sometimes just awareness of legs ( well mainly left leg tbf, but before that it was the right, like they have taken turns at tormenting me at night). I suspect its since I started running, but I’m not giving that up. Then is the nighttime back ache. Bit of a rock and a hard place as legs feel good lying on my back, but back gets bad laying on it. Its all a tricky one, its a nightly dilemma to find a position to sleep in. During the day, mutch better. Next up is to try a new mattress as drugs would be a last resort - though have tried ibuprofen, its hit & miss. Yea, it could be spinal mets, but no numbness or tingling, and pre-dates the cancer. Getting older combined with exercising more = pain at night it seems.
Anyway, science and history podcasts, with some humour, but not too laugh out loud, as then I’d stay awake to listen. Maybe something that stretches intellectually, because as your mind gets tired, it switches off - and you learn stuff meantime ( till you doze off).
I have just downloaded Sleepio - got the app via the Macmillan site. Plan to start this weekend.
I have been tracking my sleep for last 18 months on and off. Lately has got worse due to back pain and frozen shoulder (from radiotherapy). Has always been bad but worsened a month after starting Letrozole.
My issue is staying awake. “Treat” myself to one zopliclone per week for a 5 hour straight through. Otherwise I wake constantly.
Will report back on Sleepio
Hiya
I am pretty active and still working 4 days a week. I cant lift much as i have arthritis in my shoulder and knee. I have tried antihistamine based drugs and they don’t do much. I have been given 14 days of zopiclone now. I can take up to 4 hours to fall asleep even if i exhaust myself. I have tried apps. I kerp the room cool and dark.
I have resigned myself to the fact that this is my new life now.
I understand, I feel like this a lot too. Are you able to swim at all? Sorry if this sounds like a silly question but it used to be the one activity that would knock me out.
I didn’t sleep well last night & had night terrors. Dreamt i was stuck in a hospital ward and that i had new breast.
Swimming would be tough as i have limited movement in my arm. I am waiting for physiotherapy to see if that helps. At the moment I struggle to wash and do my hair, i can’t even reach enough to put it in a ponytail. Very frustrating. I do get a lot of other exercise though.
I sufferes with insomnia. Best thing i got was a bluetooth hairband for bed. It has speakers in ans so comfy to sleep in. I listen to pod casts and it really helps to distract from all the thoughts that race through my mind. I very rarely listen to a whole pod cast as i fall asleep so much easier.
I have had the same problem since starting endocrine therapy. I’m on exemestane and immediately only slept/ hours in 24. I’ve been desperate. I’ve been taking night nurse t get a solid 10 hours. Not a long term solution but hopefully it gets me into a routine. Also doing Sleepio App CBT that’s free through Macmillan
Amatripline i take and they work a treat đź©·đź©·đź©·
I use Go Stress Remedy from Chemist Warehouse. Its natural and can be taken any time day or night without after effects. It relaxes and helps with sleep.
Hi jackbaz,
I take Zopiclone and it’s the only drug that seems to work to help my insomnia.
I’ve been taking it for three years now (since diagnosis ) 4/5 days a week.
On the days I don’t take it I barely sleep. Like you I find it hard to function because I’m so tired. I finished treatment nearly two years ago now, but have been left with CFS which is of course made worse by insomnia. I have started taking magnesium and zinc supplements and st Johns wort but it is a little early on to say whether this is helpful.
I would say to the GP that the only thing that works is the zopiclone and you really need a few nights of decent sleep. They can prescribe you a smaller amount. It is addictive but then what are the consequences of no sleep! I wish you all the best. Liz
Hi thank you for your reply. I too have tried antihistamine based drugs and i have magnesium too. Basically I have tried everything and Zopiclone works for me as long as i only use it at weekends as my body gets used to it. My GP really is against giving me Zopiclone because of the addiction issues. I had it for about 3 months last year but was taken off it mores the pity. I went back to gp last week and was given a week or 2 weeks supply if i take half a dose. You are right tho the effects of lack of sleep has its own consequences. I cant believe you have had it for that long. I will speak to my oncology team at next appointment and see if they can help with a prescription.
Letrozole causes arthralgia in most of the people who take it. This is arthritic joint pains. I have had this now for three years. I am on this stuff for 5 years. To deal with the pain I take paracetamol, cocodamol and ibuprofen but only if I experience stabbing pains in my ankles or legs. I do find exercise reduces the pain and takes my mind off it.
The oncologists think that letrozole is “well tolerated” whatever that means
Seagulls