Insomnia During Chemotherapy – Is Dexamethasone To Blame?

chemotherapy drugs in a dripIn 2011 I underwent 2 months of intensive chemotherapy for cancer treatment. As is the way with chemotherapy I experienced a range of side effects, one of which was severe insomnia.

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

1) Dexamethasone

dexamethasone packet and pills

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.

 

2) Anxiety

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.

 

3) Tinnitus

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.

 

Your views

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.

14 CommentsLeave a comment

  • My sister had hogkins lymphoma…the curable one. She had 8 rounds of chemo ABVD. She was to take dexamtethazone after each chemo for 3 days, It has also been shown to prevent bleomycin toxicity. Sadly, they never checked her lungs and she died fr bleo lung toxicity. Please take all meds despite their side effects. They do so much greater good overall .

    • Hi Karen
      Thank you for your comment, and I’m so sorry to hear about your sister. I remember being told about the possibility of lung problems due to Bleomycin, but I don’t remember them telling me the dexo was to help with that. Or maybe I just forgot considering all the information I had to take in at that time. You’re right in that the meds are usually important for many reasons, which is why I suggest talking over any problems with the oncologists before taking any decisions yourself.
      Once again, I’m sorry for your loss.
      Regards
      Ethan

  • I just had my first chemo today. Breast right removed and #1 lymph node. Im on this med. I always had problems sleeping since i was in the crib. My concern light headed dizzy feels like my head to explode. I go back tomorrow for booster shot. For white blood cell. Also receiving it due to I have Lupus Hep B dormant and Hep C active plus DDD. Doc will be informed about my head

    • Hi Sherry
      Thanks for your comment and for sharing your story. I think the best thing is to keep talking to the doctors about everything you experience. It’s no easy ride chemo, so you’re bound to have side effects. It’s a case of managing them as best as possible. I wish you all the best with your treatment.
      Stay strong and positive.
      Regards
      Ethan

  • My wife is going through chemo after having a hemi-glossectomy (removal of half the tongue after SCC was discovered). She not only is experiencing the insomnia, but also heightened levels of dilerium bordering on psychosis. We thought at first it was the benedryl in the chemo regime, but last week I actually watched the dilerium begin and no benedryl was given. the doctor has decided to forgo the steroid part of the drugs so we don’t create this problem again. The episode was very acute. Do you have any tips for how to “get ahead” of the nausea that is sure to be worse now absent the steroids being infused? She takes fenegren 3 times a day and I give her plenty of fluids through her peg tube, but any other thoughts would be welcomed. Hope you are progressing well in your recovery. Ed

    • Hi Ed

      Thanks for your comment. And thanks for your positive wishes. I’m happy to report that I’m now 4 years out and so far so good. I hope your wife also has the same success in her treatment.
      Unfortunately I’m no expert in dealing with the sickness from chemo. I think to a large extent I just rode it out, trying my best to cope with it as and when it got particularly bad. Fortunately the anti-sickness meds I took did a pretty good job, and although I often felt nauseous, was never actually sick. I think the main thing it just to keep talking to the oncologists as much as necessary about how she feels. In my experience they are very open to trying new medication to try and get side effects under control.
      I wish I could help more, but unfortunately all I can offer is positive wishes.
      All the best
      Ethan

  • For 2nd cycle they reduced dexamethasone from 8mg to 2mg in my drip and i didnt take any orally. I didn’t get insomnia at night time but still felt very restless in the daytime and just felt weird.

    • Hi Leopoldo
      It’s good that the insomnia stopped. I think chemo is such an intense thing to go through, feeling restless is quite normal at times. There are so many factors at play, it’s not easy to keep a stable energy throughout. Just keep talking to the oncologists about what you’re going through and hopefully they can help make it as smooth as is possible.
      All the best
      Ethan

  • This was like reading my diary!! I wake up everyday at 230 and cannot fall asleep until 430. On Dexamethasone which i take before chemo. Trying self hypnosis now.. It worked before i did chemo so i hope it works this time..

  • Wow this is so me.
    I had chemo on Monday and up until last night I had 5 hrs sleep the whole time.
    I actually took a sleeping pill last night as on Monday when I took one it didn’t work. I was desperate as was getting so weak but also buzzing at the same time

    • Hi Mandy

      Thanks for your comment. Maybe if you think it’s affecting your sleep you could ask the oncologist what they think? You need your sleep to help you get through the chemo:-)
      I wish you all the best and lots of strength. I’m 3 years out now and still going strong. It can be done:-)
      All the best
      Ethan

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