There are many different side effects that can arise during and after chemotherapy, and due to cancer treatment generally of course.
I remember being presented with a list of potential side effects and being pretty terrified.
Oddly for someone so interested in sleep, I don’t remember insomnia being on the list, and yet it ended up being quite an issue for me. I imagine it just didn’t deserve a place among the big-hitting possible side-effects.
Waking in the night
Throughout my life I’ve experienced insomnia to varying degrees. Usually though it takes the very common form of taking a long time to fall asleep.
But during chemotherapy I started to experience sleep maintenance insomnia. This meant I regularly woke up in the middle of the night for a period of time before falling asleep again.
In my case I would fall asleep around 11pm usually, but then wake up between 2am and 3am on many nights. And I would be very, very awake; as if I’d had a full night’s sleep, or it was suddenly the middle of the day.
I didn’t feel sleepy, tired or blurry. I’d be awake for at least a couple of hours, sometimes up to four, before managing to fall asleep again.
Some of the other side effects I experienced were admittedly more worrying, so I didn’t really seek much advice from the medical staff about the insomnia.
Whilst reflecting back on that period of time, I came to realise there were probably several reasons I was having such marked sleeping problems.
When I raised it with my oncologist, he suggested it was probably due to the standard dose of steroids they were giving me to help prevent sickness. However, I think the full list below needs to be considered to really understand what was going on for me.
Possible reasons for insomnia during chemotherapy
As the medical staff suggested, I think the main contributor was not so much the Chemo drugs (Bleomycin, Etoposide and Cisplatin – otherwise known as BEP), but the steroid Dexamethasone.
Dexamethasone does have insomnia listed in medical sources as a potential side effect. A 2006 study of 60 patients found that 45% reported experiencing severe insomnia.
Furthermore, when my dose of Dexamethasone was halved to see if my sleep would improve, it did have an immediate positive effect.
I’m pretty sure there was no placebo at work either, as they didn’t actually tell me it was going to be halved, and only did so after I mentioned that I was sleeping a little better. Hardly conclusive proof, but it makes sense to me.
The second most important factor I believe was the level of anxiety, worry and fear that comes with having cancer. Once awake in the night, difficult thoughts would quickly come to mind and were at times overwhelming. Worry, stress and anxiety are well known to be factors contributing to insomnia.
I developed tinnitus as a result of the Chemotherapy, which was at its worst on the days I was receiving treatment. I found this constant buzzing sound annoying, and it would keep me awake at times when it was particularly loud.
4) Disruption to sleep patterns
My normal routines and patterns were disrupted as I needed to go to bed and wake up at different times to take various tablets. Keeping a stable sleep schedule is an important part of good sleep hygiene, so this disruption made it hard to sleep well.
5) Change to diet
It’s well known that chemotherapy can change your appetite and diet. Dexamethasone can also affect appetite – usually increasing it. In my case I found myself having cravings for carbohydrates.
I’m sure my partner at the time must have wondered if I would ever stop asking for spaghetti for dinner! In a previous article I discussed the impact that diet can have on sleep, mentioning a study which had found that increased carbohydrate intake is associated with less sleep.
6) Generally feeling bad
I just felt rubbish a lot of the time. I don’t want to sound like I’m moaning, but chemotherapy does just make many people feel uncomfortable most of the time. I believe that this contributed to the sleep problems as I would wake up feeling rough, and then find it difficult to distract myself from the sensation of all-round discomfort I felt in my own skin.
Coping with the insomnia
Even when the dose of Dexamethasone was reduced, I still had sleep problems and so I just had to cope as best I could really. I tried to follow my own advice about not getting stressed out about the fact I was having trouble sleeping.
I tried to eat food which is good for sleep and wherever possible get out of the house for fresh air and daylight, even if it was just for a short walk in the park. Essentially I just tried to manage the insomnia the same way I would do if I wasn’t undergoing chemotherapy.
Looking back, I don’t think there’s a lot more I could have done to improve my sleep other than taking me off the Dexamethasone altogether. The effects of the steroid are strong indeed, and I’m not sure that much would have been able to counteract such a powerful drug.
I didn’t take any sleeping tablets as I already felt up to the hilt in medication, and am not a big believer in taking sleeping pills anyway. So largely I just put up with the insomnia and tried to remember that I was going through all this to try to cure me of cancer. And fortunately I’m now in remission 4 years later.
Is Dexamethasone really necessary?
Interestingly, I’ve found some studies that were conducted with the idea in mind that Dexamethasone during chemotherapy can reduce general quality of life. They even suggest not using it to combat sickness unless the other anti-emetics aren’t working well.
My advice to anyone experiencing similar issues with insomnia during chemotherapy would then be to have a talk with the medical staff about what could be causing the insomnia.
If you’re on Dexamethasone and experiencing side-effects like insomnia (or some of the other side effects it can cause), then you might want to ask if there are alternatives. Following that, you may just have to think about it the same way anyone else would do.
Follow good sleep hygiene anyway as best as you can because every little bit does help. And work on the anxiety side of things using your support network and any other options available to you.
Have you been through, or are currently going through chemotherapy? Have you had problems with sleeping and if so do you know what might have caused it?
I’d be delighted to hear your story and your thoughts, so please feel free to share them in the comments below.