Brookside Dreams of Sleep

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Day two post chemo.  The side effects are full on wretched – again.  No amount of drugs, acupuncture, herbs, or meditation seems to mediate, alleviate, annihilate, or eradicate or them.  (Though these words mean the same thing, I seem to have a thesaurus in my head…thinking that if I say “get rid of” differently, the side effects will magically disappear!)

Last week, my Oncologist told me that if he could get rid of one side effect that I have, it would be the insomnia.  He told me that this cumulative fatigue is exacerbating all of my other symptoms.  Greaaaaat!

Sleep. Sleep. Sleep.Sleep.If I say it enough, do you think I’ll be able to get some?Ahhhhh, wishful thinking I’m afraid.

How many sheep can a girl count?

A dear friend suggested that in an attempt to mitigate (thesaurus continues…) the insomnia, I consult with her friend, Dr. Sarah Zallek, a Neurologist who runs the Illinois Neurological Institute Sleep Center.How’s that for a Silver Lining?The lining became even more silver when Dr. Zellek responded lickety-split with a list of questions, followed by a list of recommendations!

Dr. Zallek’s list of questions and my answers:

  1. What’s your typical attempted bedtime9 pm – 10 pm (at the latest!)
  2. Are you having trouble getting to sleep, staying asleep (aside from the hot flashes – grrrr), or both? It is easy getting to sleep, but I wake up 4 – 5 hours after going to sleep.  Then, I can’t get back to sleep. This has been going on since chemo started on the 27th of December.  The hot flashes are just added entertainment to my mid-night waking.
  3. Are you taking/drinking anything with caffeine in it at all at any time of the day?  If so, what and when, on a typical day? No caffeine at all, unfortunately.
  4. What medications have you tried for sleep in particular so far? Ativan, Ambien (makes me feel rotten), Melatonin, Benadryl, Chinese Herbs.
  5. When you can’t sleep, do you stay in bed or get up? I stay in bed (& flop around like a gefilte fish) for about 30-60 minutes and then just get up.
  6. When you can’t sleep, do you tend to ruminate about worrisome things, worry about sleep itself and how you will feel if you don’t get some, or just have uneventful thoughts that are not specifically bothersome? Despite having PLENTY to worry about, I’m not a big worrier. Worrying is a waste of time, in my opinion, because nothing actually comes from worrying.  Sometimes, when I am laying awake in bed, blog ideas come to me, so at least I’m a tad bit inspired.  :) Usually, though, I’m just wide awake with no possibility of going back to sleep.
  7. Are you napping during the day? I haven’t been (because I didn’t want to confuse my day-night schedules), but I could. At this point, I’m thinking that ANY sleep is good sleep!

Below are Dr. Zallek’s responses to my answers to her questions.

First you are doing some very good things:

  • Keeping a regular-ish bedtime will allow your circadian rhythm to work to your advantage.  If you allow yourself to vary your bedtime a lot it’s like giving yourself jet lag all the time.  A regular wake time is also really helpful.
  • Fortunately you can fall asleep, which helps me rule out a component of psychophysiological (conditioned) insomnia.
  • Your avoidance of caffeine is good. Even a little early in the day can get in the way.  The Chinese herb, however, could have stimulant in it, so caveat emptor.  They are not required to label their ingredients, and most contain a broad combination of things.  Consider holding off if possible for other hypnotic options if you’re open to them first.
  • Getting up when you can’t sleep is good. Lying in bed for long can condition you and lead you to develop psychophysiological insomnia.  The natural thing is to look at the clock, which is how you know you lie there for 30-60 minutes.
    • One valuable trick is to cover the clock when you go to bed and set the alarm (as if… I know, I know) for your intended wake time (which should be able the same time every day) so you know when the day is meant to start.  Then, don’t look at the clock (or your phone, computer, DVR, or anything else that tells time) until your alarm goes off.
    • When you wake up and can’t get back to sleep, don’t stay in bed for longer than what feels like about 20 minutes.  You’re not looking at the clock, so you have to guess on how long that is.  But, when you can’t sleep, the more you know what time it is, the more likely that will play a part in not falling back to sleep.  After about 20 minutes, get up and read or do something that does not give you the time or engage you too much.  Then go back to bed when you feel sleepy if your alarm hasn’t gone off.  If it has, try to stay up for the day.
    • To be sure, you are not having insomnia because you know what time it is.  You are likely having a biological interruption of your sleep from all you are going through.  But, if you can avoid anything else that can contribute, that’s a good thing.
  • Not worrying is very healthy! Keep that up.  It gets in the way of life and sleep.
    • Thinking, however, can busy your mind enough that it might be hard to get back to sleep during the optimal window of nighttime.  So, do your best to distract your awake brain with things that won’t keep your mind running (even if it’s a good thought process) because that will steal time away from your circadian sleep period.  Reading, Sudoku or crosswords, or other quiet activities can do the job.  If you do start thinking of good blog ideas, make some notes if it helps put those thoughts to use and not lose them, but avoid using the computer itself because it tells you the time.
  • Avoiding naps is generally a good thing. They can steal away from nighttime sleep.  However, if you can’t avoid it, take a nap in bed and try to keep it to 30 minutes or less.  Longer can get into deeper sleep, which is more likely to interfere with nighttime sleep.
    • Napping (or sleeping at any time) in any location other than your regular bed can condition you to sleep better elsewhere, so if you do nap, do so in bed.

So in sum, you probably have insomnia triggered by chemo or some indirect domino effect of it.  You don’t have a bunch of bad habits or worries getting in your way (a very good thing).  But, that means that good habits are only so helpful.  They are probably most important to avoid getting worse, but they might help specifically, too. You would probably do well with medication as an adjunct to your good sleep habits.

Some options, in order of my preference for you:

  • Eszopiclone (Lunesta) 2 mg at bedtime.  If that is not helpful, try 3 mg.  Lunesta has a 6-hour half-life and a very low risk of hangover.  In some people (including me when I tried it while travelling in India) it can create a metallic taste the next day, but it’s mild if it happens at all.  Few people stop it because of that.  Good sleep is worth it if it does happen.
  • Rozerem 8 mg. This acts on the melatonin receptors but is not melatonin.  Melatonin has not been shown to be a very good hypnotic (but can help in changing the circadian rhythm, such as for jet lag).  Rozerem is a good hypnotic and has a very low likelihood of side effects.
  • Temazepam (Restoril): it’s the most physiologic of the benzodiazepines for sleep.  Ativan has a shorter half-life, while Temazepam’s half life is 8 hours, so it is more likely to help for the night.
  • Another option is to take something to keep you alert during the day. There are stimulants (methylphenidate [Ritalin] and amphetamines, but they stimulate the whole Central Nervous System and can get in the way of sleep).  My favorite drugs for this are wakefulness promotors, Provigil and Nuvigil.They act on the wakefulness pathways rather than the whole cortex, so they don’t “stimulate” you, they just keep you awake.  They are each once a day.  Provigil came out first, and then when its patent was close to running out, the company formulated Nuvigil, which is very similar but has a slightly longer half life.  Either is fine.
    • Provigil comes in 200 and 400 mg and Nuvigil comes in 150 and 250 mg.  You can start with the lower dose of either.  You can also use them with a sleep aid.  So, if you try one of the sleep aids above and get some benefit but are still tired in the day, stay on it, but you can add Provigil or Nuvigil in the day.  It can make a huge difference.

Sleep, while not exactly lethal to malignant cells, can help everything in the light of day go better, which in turn can help the chemo do its job.

Thank you, thank you, thank you, Dr. Zallek!

After receiving her recommendations, I connected with both my Oncologist and Internist to discuss these options.  I hope that it goes without saying that any and all medical recommendations should be discussed with your physician(s).  I am going to start on the Lunesta and hope for some Zzzzzzzz’s!

In the meantime, Buzz is snoring soundly next to me.  What a heavenly sound…

Wishing you all a night filled with Silver Lining’s!

A good laugh and a long sleep are the best cures in the doctor’s book.

~Irish Proverb

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Comments

  1. Nan and Hilary Jacob says

    Wow..thanks SO much for this info! This is exactly the sleep patterns I've been going through with peri-menopause. Used to sleep like a baby until turning 50! Tried a couple of the above, but not all…will discuss with doc. Forwarding to my Mom…ditto for her.
    Thanks again, and I'm hoping for a restful slumber for you from now on! :-)
    Take good care…N

  2. Cameron says

    Dearest Hollye,

    Sweet Lunesta dreams and try ear plugs and an eye mask, too.
    Hope you get a good night sleep!
    xx
    cameron

  3. Caron says

    Holly, I am so shocked to find out that you haven't been well! I wish you loving care and a speedy recovery. Sending powerful, healing and all good energy your way — Caron

  4. D. J. Lane says

    My tips, for what they're worth:

    Usually I wind down at night by reading in bed for a while before turning off the light. When I am ready to go to sleep, I put in some soft ear plugs, put on some eyeshades, and get into a comfortable position; then I think about something very relaxing. It's almost like doing a meditation.

    For example, I imagine I'm lying in the shade on a tropical beach, hearing the waves breaking and the water flowing in and out. I focus on trying to make it seem real, imagining that my bed is the sand.

    Another favorite is to imagine I'm sleeping on a sailboat at anchor, which is rocking gently in a sheltered lagoon. I imagine that that there is moonlight reflecting off the water and a gentle breeze wafting through my cabin. Again, I focus on imagining I am really there, but I avoid thinking – I'm just experiencing what it would be like to drift off to sleep from within my lovely fantasy.

    Usually, I wake up the next morning. When all else fails (which sometimes happens when the source of my insomnia is my husband snoring or some other external disturbance), I will retreat to our living room and try to sleep on the couch. Sometimes, I will even turn on the TV to a movie I've seen before or to some other not-very-interesting show. I keep the sound fairly low, and I will sometimes fall asleep that way.

    As much as I'm tempted to read when I'm having trouble getting back to sleep, I do not recommend turning on the light during the night. I believe that doing so makes it harder for most people to get back onto a regular sleep cycle. And when I have tried it, I haven't found it helpful – even though that is part of my evening sleep ritual.

    Exhaustion is no picnic. I wish you the best of luck.

  5. Helen Melchior says

    Dear Hollye,
    You are one amazing lady! I'm so truly sorry you are going through this painful journey, but so happy I've gotten to know you better!
    Warmly,
    Helen

  6. katherine says

    Great recommendations for any of us with persistent sleep issues. Thanks for this. I'm forwarding to a few people I know…
    Here's wishing you REM cycles aplenty.

    Love K