Insomnia During Chemotherapy – Is Dexamethasone To Blame?

photo of an iv drip used in chemotherapyBack in 2011, I underwent 2 months of intensive chemotherapy for cancer treatment.

As is usually 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 reading a long list of potential side effects and being fairly terrified. I don’t remember insomnia being on the list, but it ended up being a major problem for me.

Either it was on the list and ‘chemo brain’ has since erased my memory of it. Or perhaps it just didn’t warrant a place among the more serious side effects.

Waking in the night

Throughout my life, I’ve experienced insomnia to varying degrees. I usually have what’s sometimes called sleep onset insomnia – when it takes 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.

Awake but not tired

I would typically fall asleep around 11 pm but then wake up between 2 am and 3 am on many nights. And I would be completely 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 seek much advice from the medical staff about my insomnia.

On reflection, I’ve come to realize there were probably several reasons I experienced insomnia during the treatment.

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

box of 2 mg dexamethasone tabletsAs the medical staff suggested, I think the main contributor wasn’t so much the chemo drugs (Bleomycin, Etoposide, and Cisplatin – otherwise known as BEP), but the steroid Dexamethasone.

Insomnia is a well known potential side effect of Dexamethasone. A 2006 study of 60 patients found that 45% reported experiencing severe insomnia.

The website chemocare.org lists insomnia as a side effect. And cancerresearchuk.org have the following advice:

Talk to your doctor or nurse if you’re having problems sleeping. It can help to change a few things about when and where you sleep.

Interestingly, when my dose of Dexamethasone was halved to see if my sleep would improve, it definitely helped.

I don’t think it was a placebo effect, as they didn’t actually tell me about the change in dosage for a couple of days. Hardly conclusive proof, but it makes sense to me.

2. Anxiety

Another key factor 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. Anxiety and stress are known to cause or exacerbate sleep problems.

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 the constant buzzing sound annoying, and it would keep me awake at times when it was particularly loud.

4. Disruption of 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 had 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. There’s an interesting study which showed that increased carbohydrate intake is associated with less sleep.

6. Generally feeling bad

As anyone who goes through chemotherapy will know, you tend to feel unwell and/or not quite yourself a lot of the time.

I believe this contributed to the sleep problems, as I would often wake up feeling unwell. And then find it difficult to distract myself from the sensation of 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 just tried to cope as best I could.

I tried to stay calm, and not allow myself to start stressing when I woke in the night or had difficulty falling asleep. I did simple breathing exercises to take my mind off any discomfort and help me relax.

I tried to eat healthy food, avoid stimulants and heavy food in the evening. And I went out every day for some fresh air and daylight, even if it was just for a short walk in the park.

Essentially, I just tried to manage my insomnia the same way I would do if I wasn’t having 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; 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. 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 still all-clear 7 years later!

Is Dexamethasone really necessary?

A study in 2005 was conducted with the idea in mind that Dexamethasone during chemotherapy can reduce general quality of life.

The study authors suggested not using it to combat sickness unless the other anti-emetics aren’t working well.

My advice to anyone experiencing sleep problems during chemotherapy is to talk with the medical staff about it.

If you’re on Dexamethasone and experiencing side effects like insomnia (or some of the other side effects it can cause), ask if there are alternatives.

I also recommend practicing good sleep hygiene 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 do you know what might have caused it?

Please share your story and thoughts in the comments below.

31 CommentsLeave a comment

  • Been on dexamethasone since being treated for chemo. Just don’t sleep and kicks off my sinuses and headache for about week.
    In for my 4th chemo today and had about 2 hours sleep….got to take another 8 tablets for another 2 days then another 2 for 3 days. Going to be a long day. I thought with chemo I would be asleep all day!!!!!

    • Hi Debbie
      Thanks for your comment. Talk to your oncologist about the lack of sleep and ask if they think it’s the dexamethasone. I know what you mean about thinking you’d be sleeping, not suffering from insomnia! But you might find that changes as time goes on. It did for me, as I slept more later on in the chemo.
      All the best with your treatment.
      Regards
      Ethan

  • First chemo yesterday with 12 mg Dex via IV. Was up at 5:00 a.m., chemo started at 9, and was unable to sleep till nearly 1:00 a.m. the next day. Restless legs, occasional fast heartbeat, and felt anxious for unknown reason. My daughter suggested maybe Dex and I feel she was right. Saw this website and realized I wasn’t alone. Normally an energetic person, I get up 5-5:30. Today I awoke at 5:15 so I got a start by walking the dog and got my day plan in order, with great flexibility. I had expected to be tired. This is one of the few websites that mentions the Dex sleepless night issue. Glad you’re there.

    • Hi Beth
      Thanks for your comment and for sharing your story. I’m glad you found the article useful! I imagine that being the start of your chemo, there may have been some anxiety at play there too. Hopefully in time you might start sleeping better again. But at least you have an idea of what else it could be that’s causing the sleep problems. Mention it to your oncologist and see what the say about the Dex.
      All the best with your chemo. Stay strong and you’ll get through it.
      Regards
      Ethan

  • I’m on Dex whilst receiving radiotherapy on my brain. Insomnia is the issue. I’m also on anti convulsions, but it’s the Dex causing the issue. I was on it 2 years ago when transitioning to new NSC Lung cancer medication. I have not received chemo yet so I know that it’s the Dex.
    I started on 12 mg two weeks ago & down to 4mg during breakfast. Just started taking sleeping meds to knock me out, usually only get 3 hours sleep. Trying to up the excercise, improve diet to combat the insomnia.
    Yesterday, after 10th day of 3 hours sleep, I stretched for 40 min, walked for 40. Made wife coffee at 6am, basically stayed active cleaning the house until 2pm. Could not switch off or relax. Forced myself to sit at the PC & analysed bridge notes for another 2 hours. Finally started feeling exhausted at 8pm. Took the sleeping meds at 9. Woke up at 11pm!!
    Seeing Onc on In 3 days to find an alternative sleep option.

    • Hi Scott
      Thanks for your comment, and sorry to hear you’re in the middle of such a tough time. It’s interesting that you’re able to pinpoint the Dex as the cause of your sleep problems, though I suspect there are other factors contributing. Hopefully your oncologist can work with you to help you sleep better.
      All the best.
      Regards
      Ethan

  • I had my first chemo treatment on Tuesday for breast cancer and have been given dexamethasone for 3 days the first night I had 4 hours sleep last night I was awake all night till just after 7am got fed up of lying there so tried reading for a couple of hrs dozed off just after 7 and woke up at 820. Feel so tired this morning hope it improves

    • Hi Sue
      Thanks for your comment. I would definitely mention this to your oncologist, and see if they think it could be the cause and if there’s anything that can be done about it. Unfortunately though, sleep does get affected by cancer treatment, and can be an up and down situation.
      Stay strong and I wish you well with the treatment.
      Regards
      Ethan

    • Hello Sue, I mentioned these sleep problems to my Oncologist yesterday. I just don’t feel tired and sleep for only a couple of hours. My body and my eyes then give up.
      The Dexamethasone contains a steroid( I didn’t know) try not to find out too much. He suggested taking the second pill of the day earlier. Today I plan to remember! to take it after my bit of lunch.
      I’m being treated, since February , for Secondary breast cancer and just take the anti sickness tablets for three days after each treatment.
      Good luck and I hope my chatter may be useful to you.

  • It has been weeks and two chemo treatments and I have not slept a wink!!! Getting very week. I have tried everthing from otc to prescription. Double some up and still no sleep, I am very miserable!!!

    LJ

    • Hi there
      Thanks for your comment. Sorry to hear you’re struggling with the sleep. Have you mentioned it to your oncologist? Are you taking Dexamethasone? It might be good to talk to them about how its affecting you and see if they can help.
      Stay strong!
      Regards
      Ethan

    • Thanks for your blog, I am awake right now from dexamethasone – For the past 3 mornings, I have gotten up at 5 am; latest 6 am amazingly wide awake — were you on it continuously between treatments? —

      I have been on 4 (4 mg) (ro maybe higher in hospital not sure) tablets since 11/14 but starting the taper down today. My last tablet is Friday Nov 25th and then I have 12 days before my next in-patient chemo (I have NHL)– and will of course discuss whether they can lower the dosage. By then hopefully my new growth that was being treated and my leg swelling will be down as well.

      Fortunately I have been totally asymptomatic during my whole “illness” and am usually quite the sleeper so do hope this is just in response to the steroids. Any other tips welcome but of course trying to get exercise and eat well –

      • Hi Kathy
        Thanks for your comment. To be honest, it’s such a long time ago now, I can’t quite remember if I had it every day for the 2 months! I have a suspicion it was only on chemo days which would have been around half the 2 months. Very good question! I guess my brain is slowly trying to forget all the details.
        I imagine in your case it could well be playing a part, but so could worry etc. Maybe you could mention it to your oncologist and see what they say. And as you say, keep up the healthy lifestyle as much as possible.
        I wish you all the best in your treatment.
        Stay strong
        Ethan

  • Hello. Thank you for the post. My mother is suffering from cancer and is undergoing chemo. She was diagnosed with breast cancer in 2009 and then 4th stage liver in 2014 . Then she was perfectly fine due to a miracle. Now again it has come back in liver and pancreas. She is under chemo and is unable to sleep and unable to eat. She doesn’t like to eat at all, finds everything tasteless. Doc said the chemo is without side effect and there won’t be any hair loss. Can all this be a side effect of chemo and will she be alright once done? Or it’s a part of the disease? Looking for your valuable input. Thank you.

    • Hi D
      Thanks for your comment, and sorry to hear your mother is going through this. I really couldn’t say whether the appetite and sleep changes are due to the chemo or disease. I find it odd that the doctor said there would be no side effects from the chemo. I think most people have some effects, even if mild. I’d ask them again if I were you. Equally though, the appetite loss and sleep problems could be due to stress or anxiety because of the illness and treatment.
      I wish you all the best
      Ethan

  • Hi there, I’m experiencing the same thing with chemotherapy. At the beginning I thought the insomnia I have every night was natural of the change of routine or the stress involved in the general situation. But now I got interested in your comment about this drug Dexamethasone I’m taking.
    I had talked with my boyfriend about this, I told him I didn’t want to take different kind of drugs to prevent the same thing (sickness) but he thought I should take everything the doctors prescribe to me! And I kept on this, I guess in the next visit to the doctor I will ask to reduce the doses of this! Thank you for the information you are sharing, much better than the comment of my giant!
    Kind regards!!

    • Hi Loris
      Thank you for your comment. Sorry to hear you’re going through chemo right now – I do hope you’re getting on ok with it and that’s it’s not too much of a struggle. I can understand your reluctance to take more medication – it seems enough just to take the chemo, I know. And I can also understand your boyfriend thinking you should take all the medication your doctor prescribes you. Both points of view are I think totally understandable and valid. However, if the drug is causing you other side effects which are impacting on your quality of life and health, then perhaps talking to your doctor about it is a good course of action. You can work with them to decide what the best combination of medication and dosage is to prevent the side effects of the chemo but also prevent side effects of those drugs.
      All the best with your treatment and stay strong!
      Regards
      Ethan

  • 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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