I have often suffered with insomnia and taken nytol. Having spoken to the nurse at hospital she told me not to take it now as it may interfere with my medication. I am on imatinib 400 and now in remission. Anyone any ideas to help me sleep.
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Hi @pammy
There is a Cognitive Behaviour Therapy called CBT-I for insomnia. I understand it has very good success rates. Think you need referral via GP
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Hello @pammy
Thank you for posting your question on our forum.
I’m sorry to learn about you experience with insomnia, I imagine its quite frustrating.
Personally speaking, after my diagnosis of Chronic lymphocytic leukaemia (CLL) in April this year, I decided to re engage with my local gym, and asked my GP for a gym referral. I felt that the health benefits this offers was a good idea but I’ve also found that it does promote a healthier sleep pattern for me as I attend the gym three times a week (Monday, Wednesday and Friday mornings) and this, whilst taxing, is rewarding from a health and wellbeing perspective, as well as a social perspective as I often enjoy a coffee and a chat after each session with some of the other gym members and / or staff. Sometimes I use my Alexa device to play soothing music for 20 or 30 minutes that helps me drift off.
Let me be clear, I’m not suggesting that this is the solution to your situation, far from it, but if I may be so bold its something to consider if you feel it may be of help. That said, always refer to your medical experts in the first instance.
Of course there a numerous other ways to promote better sleep, for example mindfulness and using devices to play relaxing music etc, but again do speak with your GP / medical specialist re this as everyone is different.
There is a forum thread Books to read during treatment or when having problems sleeping - General chat - Blood Cancer UK Online Community Forum - that, if you are a reader, you may want to visit.
Take good care of yourself
Mike.
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Hello there @pammy, welcome back to the forum fellow insomnia sufferer—although it’s certainly no joke, is it?!
I’ve lived with insomnia since childhood and in 2023 was diagnosed with Polycythaemia vera (Polycythaemia vera (PV)). My second haematologist told me that some of us with blood cancers can develop sleep apnoea due to decreased oxygen in our blood caused by our blood disorders. I did an apnoea test which found I don’t have it, and so was prescribed melatonin and encouraged to develop a sleep and wake routine.
Incredibly, and I hope this is motivating for you, my insomnia is no more! It’s been a revelation sleeping through the night, being able to nod off in the first place, and being able to get back to sleep when I wake in the night.
I also got an Oura smart ring which helps me know my sleep patterns, how much sleep I need, even my chronotype—apparently I’m an early bird, which is news to my former owl-like self!
Getting early morning light into our eyes can also help regulate when our personal circadian rhythm kicks in at night, and thus makes us sleepy.
Anyway, that’s just my anecdotal experiences, maybe they could help you too.
Do please let us know how you get on @pammy, I feel for you.
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Good afternoon @pammy
Thank you for your post.
We’re so sorry to hear that you having problems with your sleep.
We can imagine this is very frustrating for you.
I’m glad to see that others have replied with their experiences and very helpful suggestions.
Could we ask if your haematology team are aware? We would advise letting them know as they may be able to provide further suggestions/ referrals or an alternative medication. Your GP may also be able to assist with this.
Just in case it is useful, we have a page on Sleep problems and blood cancer | Blood Cancer UK it can help you understand why this may be happening and includes different ideas that may help you sleep.
It can be frustrating not sleeping/ having broken sleep, and sleeping badly can feed into feeling more fatigued or run down so we can understand your concern. Although it’s important to get enough sleep, also try to not put too much pressure on yourself if you can’t get to sleep. Often people try to have a ‘set bed-time and wake-up time’ in which they aim to stick to the same time of going to bed and waking up at the same time each day to see if this can help put them ‘in a routine’, but we understand this is not always possible.
Do take care and let us know how you get on.
Warm wishes,
Emma (Support services nurse)
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