504158EF91EAA8A27A35DB2FC810D5BC

Insomnia won’t kill me, but it’s not making me stronger either

Let’s talk about insomnia. For the past several weeks, I’ve been coping (with varying degrees of success) with insomnia. This is not uncommon in cancer patients and seems to be linked to cancer-related fatigue, as well. I hate taking any kind of drug that fuddles my mind, so I avoid my sleeping pills as much as I can. I decided to go to PubMed (1) to see if I could find a magic wand.

Yes; I want a magic wand. I deserve a magic wand! Give me my magic wand!

The first thing I discovered is that I am not alone. I had that sense from the people in my support groups and the wonderful on-line breast cancer community, but having a scientific bent, I mistrust purely anecdotal evidence. One abstract I read is written in straightforward language and reinforced my sense that this is a common issue for us:

 “Insomnia affects up to 50% of patients with cancer, but has received little attention from the oncology community compared with other symptoms such as pain and fatigue. Insomnia and subsequent sleep disturbances can lead to fatigue, mood disturbances, and contribute to immunosuppression, which can have a profound impact on quality of life and perhaps affect the course of disease. Insomnia in cancer patients must be distinguished from cancer-related fatigue. Although they are 2 distinct conditions, insomnia and fatigue are interrelated. Insomnia often leads to daytime fatigue that interferes with normal functioning. Conversely, daytime fatigue can lead to behaviors such as napping, which result in insomnia.” (2)

A slightly more technical article is directed specifically at physicians who treat insomnia in cancer patients. It also discusses the interrelatedness of cancer-related fatigue and insomnia, and the fact that insomnia is undertreated by oncologists. The author writes, “Evidence suggests that management of insomnia through a combination of pharmacologic and nonpharmacologic means can have a positive impact not only on insomnia but also on related symptoms and, consequently, on overall health and quality of life,” and suggests that “[p]hysicians should use hypnotic agents appropriately and be aware of the reduced potential for producing tolerance and dependence with the nonbenzodiazepine hypnotic agents. The management of insomnia in cancer patients should include a global treatment plan designed to address not only the underlying sleep disturbance but also the related symptoms that may contribute to insomnia or occur as a result of it.” (3)

So the first thing I learned is that it’s not all in my head; it’s a real issue. This is important because whenever I have a symptom of any kind my first reaction is that I’m imagining it or exaggerating it or acting like a drama queen. (I won’t subject you to the roots of my psychological problems. Nothing to see here. Let’s move on.)

Finding that there is actually medical literature on the subject and that I am in very good company, with up to half of all cancer patients experiencing insomnia, was not only affirming, but also helped to reduce the anxiety that is related to the insomnia.

I recently noticed that the longer I have been suffering from insomnia, the greater my anxiety just before going to bed. This is independent of any other anxiety I may be experiencing, like that related to the cancer itself or to work or family matters. Getting ready for bed is no longer a time of progressively “powering down” from the day, slowing down, divesting myself of the cares of the day, relaxing, settling. It has become a tense, anxious time. “Will I get any sleep? Should I take something? I don’t want to become dependent. What if I’m up all night though? Do I have morning commitments?  Why is this so hard?” If I’m not careful, I can escalate and end up becoming quite anxious indeed.

I need to calm myself. I reassure myself with the same things I used to tell my patients. Insomnia is self-limiting. It won’t kill you. You will eventually sleep. And I make the same snarky replies to myself that some of my patients made to me. Okay, we tried that. Next?

I listen to a pleasant book or quiet music for eight to fifteen minutes and then put on some ambient sounds like ocean waves or birds in the forest or rainfall. I adjust my breathing, gently slowing it down, and then I begin progressive relaxation. I may take myself on a guided meditation.

On occasion, this works. More and more these days, it does not. I should probably stop trying to juggle the meds I have and instead talk frankly with my physican about the problem. The thing is, I feel like a wimp if I bring it up, which brings us full circle back to my psychological issues. I guess I’m going to have to get over myself, though, and just do it.

Before I take the radical step of actually consulting with my doctor, I think I’ll try one more remedy: synthetic melatonin. Many people I know who travel quite a bit use it to combat jet lag. Melatonin is a hormone produced by the pineal gland, and its production is related to the daylight we are exposed to. I don’t get outside every day and there is little natural light in my house. (My Vitamin D level is very, very low as a consequence.) I will try being more conscious about being outside in the sunshine for a while each day, and I will also get hold of some melatonin and see if it helps me sleep.

No magic wand to be found, so I’ll just keep trudging along until I find something acceptable that works.

Note:

Since this is such a common issue for people who have cancer, I thought I’d finish off with a link to Living Beyond Breast Cancer’s informative page on sleeping problems (insomnia and fatigue).

References:

1. PubMed is a free online resource that provides access to professional medical literature. From the homepage: “PubMed comprises more than 23 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.”

2. JF O’Donnel, Insomnia in cancer patients. Clin Cornerstone. 2004; 6 Suppl 1D:S6-14.

3. DE Theobald, Cancer pain, fatigue, distress, and insomnia in cancer patients. Clin Cornerstone. 2004; 6 Suppl 1D:S15-21.

 

 

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23 Responses

  1. cherrypipes says:

    (((((((((((((((((((Knots))))))))))))))) i have been taking sleep meds for going on 17 yrs now and still some nites i am awake way longer then i am supposed to be. i have gone thru all the easy meds, and am now on those “approved” narcotics………

    roll over ….then look at the clock ………..damn only 1/2 hour since last time, roll back over, listen to the nite sounds, breathe, don’t think (particularly hard for a type A personality engineer btw)

    ever try to NOT think at nite or turn off the “Committee” as i call it?? even saying a prayer . HP can i sleep now?

    now in last few years there have been nites when nothing works and i leave a message on my door for wifey to see……

    went back to bed at 3 am took another pill (8 hours of 1st one not working seems enough to me)

    most times i know she peeks in at 8 a.m. or so when she gets up , closes back the door

    cause something finally worked……

    i had to give up being a) in charge of this problem and b) doing what doctor said? yeppers

  2. As always, well written, succinct, rational, and real.
    Enjoyed reading, and certainly hope you sleep tonight.

  3. We need to talk! I should have said something earlier but I thought you were having sleep issues due only to pain issues. Melatonin can be very helpful, by the way and there are also some additional behavioral techniques that might help. Let me know if you want to discuss them.

    • Knot Telling says:

      Not only pain issues, no. Yes, we’ll have to juggle the time-space continuum and have a chat about this!

  4. Paula says:

    Hope you find some things that help Knot. I turn on my electric fan at night (just for the noise) and it puts me right to sleep. Good luck!

  5. JSM says:

    Going through chemo, I was given atavan (lorazepam) and it helped me sleep. I took it a while afterwards as well. That “afterward” has lasted more than 8 years, and I finally sleep better than I have my whole life. Some of my co-cancer-participants call it “Vitamin A.”
    I combine it with an antidepressant (for anxiety and other reasons, all post-BC treatment) and that works for me.
    BUT – I was a poor sleeper my whole life, and the main point for me, here, is, I *finally* allowed myself to use pharmaceuticals, which I resisted for many many years. It has been worth it. Getting enough sleep, and having it be *predictable* has made a huge difference in my quality of life.
    So, my suggestion is to get your doc or a psychopharm doc, to look at the whole picture with you. Post-chemo, mets, post-menopause, age, anxiety…..and who knows what old issues reside in here – so many reasons why sleep is elusive. You deserve to sleep well!
    JSM

    • Knot Telling says:

      Thank you very much, JSM. I do have lorazepam at my disposal and also zopiclone. I’m just really stubborn about taking them. Sigh.

  6. Gail says:

    We are in same 50%! I take meds for sleep which work well most of the time. Getting a wave of fatigue during the day is confusing but if I need to I lie down for an hour. It’s all about tuning in and really listening to my body. I sleep in. Probably the sleep clinic I went to is correct… Sleep apnea caused by pain meds… CPAP machine won’t fix it. They suggest another med to fix it… I haven’t investigated. For now, hey everyone I sleep in, get over your judgements about that, it is what it is! If you can’t deal with it I can’t help you! I’m doing the best I can. Sleep well!

    • Knot Telling says:

      Hi Gail!

      Now that is interesting. I hadn’t considered the possible issue of sleep apnea caused by the pain meds. That is an interesting route to explore. Thank you.

      I like your attitude!

  7. You are not alone! I have had dreadful insomnia for the past few years, even though I am finished with treatment, the trauma around the death of my mother two years ago triggered it again, and I haven’t been able to sleep properly since. It is some consolation to know that while I lie awake at night, others are struggling with the same sleeplessness, but it is not nice for any of us to have to deal with it. I wish I could wave a magic wand for you. My way of coping is to write on my blog late into the early hours – not a solution for insomnia, but one that saves my sanity many nights.

    • Knot Telling says:

      Thank you, Marie. I’m so sorry that on top of the grief of losing your mother the insomnia returned. That is insult to injury.

      Big hugs.

  8. Catherine says:

    I was just about to suggest melatonin. It is something I take. Some types seem to “hit” me more than others. But in any case I hope you are able to find some relief asap.

  9. Susan Zager says:

    You are not alone and not a wimp. Lying awake with your thoughts and not being able to sleep is just awful. There are some great meds that are for depression that help with sleep and it’s worth getting the right ones. Melatonin works for a lot of people. I hope you get some relief soon and find what works best for you with happy pleasant dreams. Having real quality sleep is so important. Extra hugs and love to you KT.

  10. Maxine D says:

    Oh KT – I cannot say I have truly suffered insomnia, but I do know how distressing even one night not sleeping well can be, so be assured of my
    Hugs and Prayers
    Maxine

  11. You’re definitely not alone. I’ve been dealing with insomnia to varying degrees ever since cancer, even though it wasn’t an issue before cancer. I long for the days (nights?) when I regularly slept 7-8 hours straight through.

    • Knot Telling says:

      Oh my, yes! I can barely remember it now…

      Thanks so much for reading and commenting, Eileen. It’s also good to know I’m not alone.

  1. 23 February, 2014

    […] post by Knot Telling on insomnia, something I know many of us deal with and which can wear us […]

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