How to deal with insomnia during chemo

[Weirdconditionaltense]

Can you say how you dealt with insomnia during chemotherapy?

Fortunately, I suppose, I've had insomnia for quite a while before my cancer diagnosis and to be honest, it doesn't get me down too much. I do wonder what more sensible things I could do besides scrolling of course.

I've read that some people take melatonin and am thinking of asking my oncologist about whether I could take it around the steroid days..(have only had one of the 6 cycles so far)

So 2 questions please - have you or do you take melatonin?

Either way, how do you kill time in the early hours?

Horrible, isn’t it? I think at my low point I didn’t sleep for 3 days straight. Yet I was so drugged and exhausted I’d just sit on the couch with my mouth hanging open, drooling, 😖

I luckily had a dear friend on an overseas trip who was up and about during the night hours who would message me and send me jokes and photos. I’ll never forget his kindness.

One thing I always recommend to everyone is to change how you think about sleep. We aren’t supposed to sleep through the night. Waking up and being awake for an hour or so during the night is biologically normal. Roll with it.

I read. I get up, make a cup of herbal tea, I’ll hang the washing up. Do something for 20-30 minutes, go back to bed with a cup of tea, read and eventually go back to sleep.

Do you already take magnesium? If okay with your oncologist, I’d try this first. I’ve tried melatonin (well before I had cancer) and it made me very groggy the next day.

I hope your chemo is going well OP, apart from the insomnia of course.

When I was going through it, I kind of resigned myself to just living it, watching box sets or scrolling or listening to the radio. I didn't worry about the lack of sleep because I didn't have to get up and go to a job in the morning. I could always have a nap at home to catch up on lost sleep.

Do you have to take the steroids? I found out that I was only taking them for anti-sickness, but after the first round of chemo where I was horrendously sick, they also gave me a really strong anti-sickness drug (Aprepitant), so I asked if there was any reason I needed to take the steroids and they said no, they were only for anti-sickness. Once I stopped taking them, I slept much better.

Oh that's interesting. Thanks Orange I'm going to slip this into the conversation when I see the oncologist. Cheers and all the best :) x

I’ve restored to Zopiclone , lowest dose but is helping

Thanks Coastal.do you only need it when you're also taking steroids? Or do you take it more often than that? And do you completely zonk out once it kicks in?

I also ended up with Zopiclone, and it did help. I was worried about addiction but got off them fine once I stopped treatment.

I also got into audiobooks, and here I am 7 years later and still put an audiobook on if I wake in the night.

I used/use a musicoszy sleep headband and listen to podcasts. Some good sleep inducing ones or boring history for sleep etc. never really slept but certainly helped to rest my brain especially whilst in hospital

Have a look at the lululight app - life changing for me and hopefully could help you too! Good luck!

I used melatonin and it was somewhat successful. Definitely worth a try

Melatonin didn’t work at all for me, tried all doses

Hi Dietcoke, can I ask you some more about zopiclone please? How did it make you feel the next day? Also did it make you conk out really fast- I'm a bit scared of any medicine that would take effect really suddenly. And lastly can you take it as and when you know you're going to have a bad night- thinking of the 3 or so days when I'll be on steroids for the infusion. Many thanks for any details about zopiclone. x

Heyy yes happy to help although it was 7 years ago now so apologies if it's a bit vague.

I definitely had a few rounds of chemo before side effects started kicking in and then I was prescribed the zopiclone. I remember before I started taking it that nights were difficult more because of the hot flushes (I had breast cancer at 30 and so was given zoladex to protect my reproductive system, which put me into a fake menopause) rather than from the steroids, although I don't think those helped.

I started on one but moved up to 2 as I was still waking in the early hours. I don't remember it being particularly fast-acting, or making me feel really sleepy or dopey before I went to bed. I do think though once I was asleep it kept me asleep, and I stopped having so many night wakes. In terms of next day effects, I'll be honest I felt pretty rough through most of my 4 months of chemo, so who knows if it was the zopiclone or all the other stuff I was on. I had what felt like a pretty intense regime of meds each chemo cycle (nothing to compare it to though so maybe I got off lightly). So I was feeling shit in the day anyway, and the zopiclone just meant I wasn't awake and sweating all night too.

In terms of taking them ahead of a bad night, I was sleeping so badly all the time because of the hormonal impacts that I think I took them pretty consistently once I was on them. But I stopped pretty easily about a month after I finished chemo.

I hope your chemo goes well, it was a very grim time in my life but I'm still here 7 years on, and the fake menopause was worth it as I've gone on to have 2 kids. Wishing you all the best and happy to answer any more questions you might have.

@INeedaDietcoke thanks for those notes. Really helpful. Good to know you came off the zopiclone without diffiiculty.

Lovely to know you've had kiddies now :). You've been through a lot so lovely to hear it didn't affect your fertility

Zopiclone. It will restore some sanity. I took it all the way through my chemo. Steroids are fucking hideous. You need to get some sleep my love. I hope you get through this and back to fine health soon.

It takes me about 45 minutes to go to sleep after taking Zopiclone. I do feel a bit zoned out the next day but better than if I haven’t slept.

Hi again, can I ask you what dose of zopiclone you were on ? Seems like it comes in either 3.75 or 7mg. I've had 6 days on the lower dose but I still wake at silly hours of the night. Just curious which dosw workws for you.

Hi again, can I ask you what dose zopiclone you take ? I'm taking the 3.75mg but not sure if it's doing enough. Still awake at weird times.

Insomniac here - earpods have been a life changer for me - plus BBC sounds. So I choose gentle programmes - Desert Island Discs is great. It's interesting enough to listen to, but gentle enough to snooze off to and doesn't wake you up. There are plenty of episodes of Mark Steele's in Town, More or Less, It's a Fair Cop, Just a Minute etc too (Handy hint. Only use one ear pod, if you like sleeping on your side. You can easily move it to the other ear, upside down, if you want to roll over. It also means that if it falls out in the night, you can use the other one, and don't have to go hunting for it! )

Hope that helps.

I just didn't chase sleep. On some nights after high doses of dexamethasone I would sleep very little but I wasn't working so just tried not to worry about not sleeping. There was always someone on th MN cancer thread at any hour as well!

I'm an insomniac who takes zoplicone. 7.5mg dose. The lower dose is for the 'elderly' and I'll be honest it doesn't work for me.

I can feel a bit groggy the next day, but it's better than not sleeping at all.

Thanks for your post. Yes I'm enjoying BBC sounds in the wee small hours too. hadn't thought of Desert Island Discs but I really like those, used to catch them all the time, so I'm going to look for those. Mark Steel I can also try . Given I don't have to get up for work I know I shouldn't get too down about all this..Just gets to me sometimes..Ah well. Thanks again 😆😄

Thanks Hatty,..Can I ask how long you've been taking it ? Have spoken to my GP just a little while ago..Agreed I could alternate between trying the antihistamine and then the zopiclone..Going to do that for a few days.

@Weirdconditionaltense I've taken it on and off for about 25 years to be honest. I can go months and not need it, and then have a real bout of being unable to sleep and can take it every single night for weeks.

Nowadays the practice nurses make disapproving noises at me, and keep saying 'It's addictive' but actually it has a 12 hour life (so it's out of your system by then) and whilst it might be addictive in that the insomnia may well return it is not addictive in that you keep needing more and more of it to be effective.

I'm an educated adult who has weighed up the options and decided this is what works for me. I've always struggled with insomnia and just couldn't cope when I had a full time job and kids. Now I'm in my 60s, if I have to be up early/at a certain time then I will take a tablet to get me off (and it keeps me asleep) IF I haven't fallen asleep by about midnight. I'm in bed roughly 10ish. I'll give myself a couple of hours and then decide I'm not prepared to stay awake the entire night and feel shit.

If I don't have to be up or doing anything much the next day I often don't bother because it doesn't matter if I finally fall asleep at 6am, say, if I can sleep in.