Insomnia with tamoxifen?

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Linda37
Linda37 Member Posts: 42

Hi....I started taking tamoxifen 2 weeks ago and have noticed a serious disturbance in my sleep.  I wake up most nights in the middle of the night, wide awake, and can't get back to sleep for hours.  When I do sleep, I have really vivid dreams.

It seems that part of my issue when sleeping is temperature....I can't seem to get comfortable.  I haven't had any night sweats or hot flashes, but if I put the covers over me I get too warm, if I take them off I get too cold.  I can't seem to win.  I didn't have chemo and this wasn't happening before taking tamoxifen.  I've tried taking Melatonin before bed but that doesn't seem to be doing much good.

Any advice is appreciated.  I need my sleep! Undecided

Linda

Comments

  • Kleenex
    Kleenex Member Posts: 764
    edited August 2009

    The sleep disturbance is one of the biggest pains in the butt with Tamoxifen...The Melatonin, while sometimes helpful as a sleep aid, also sometimes gives me vivid dreams, and a nurse friend of mine said that it does that to her, too (no cancer or Tamoxifen). She suggested "mixing it up": don't automatically take the Melatonin every single night. I was horrified that Benadryl clashes with Tamoxifen, because it was my magic sleep aid. Xanax helps me sleep great, but then I end up in a fog the next day and it can also make me a little constipated. I do the best if I manage to get some good exercise during the day and avoid eating heavy foods within about three hours of bedtime. Fatty things especially can really make it difficult for my body temperature to stabilize itself.

    I really was becoming acclimated before the heat of summer hit, and even then I did okay until it got really humid. You may find that you will eventually adjust to a new normal. I have to wear the lightest-weight pj's I can find and crank the ceiling fan up to high, but this heat is still difficult. I'm thinking that I will do better again when we're deep into fall and I can get the bedroom back down to 60 - 68 degrees.

  • lexislove
    lexislove Member Posts: 2,645
    edited August 2009

    I do not sleep. I tried everything. Nothing helps for me.

    I'm lucky if I get 6 hours at most.

  • Linda37
    Linda37 Member Posts: 42
    edited August 2009

    Kleenex.....I spoke with my doc today and he wants me to try taking the tamoxifen earlier in the day.  In the meantime, he told me to use bendadryl as a sleep aid. ???  I've seen a lot of people on this board mention that they were told not to take benadryl while on tamoxifen so I'm not sure what to think.  I've used benadryl in the past and my only problem is that it makes me fall asleep but it doesn't necessarily help me stay asleep.  I have no trouble falling asleep, it's staying asleep that is the issue for me.

    Based on what I've read I don't know if I should take Benadryl.  My doc also said that I can continue to take Wellbutrin while on tamoxifen, but I read all over this board that other doctors are telling their patients not to take it.  So confusing.......

  • Kleenex
    Kleenex Member Posts: 764
    edited August 2009

    My oncologist said at my follow-up appointment back in March that it was okay to take Benadryl, but since then, I've seen several mentions that it is a "CYP2D6" inhibitor that works on the same pathways as Tamoxifen does. The information below is from THIS site, breastcancer.org, from earlier this year, I think, and there's another part of this same link that suggests that you mention it if you've taken any of these inhibitors while on Tamoxifen, as you may have undermined its effectiveness and therefore might need to take more or other meds. There are varied opinions as to whether this CYP2D6 think is truly meaningful or not - but I figure if I'm going to take Tamoxifen, I'm going to make sure I let it do the good along with the bad.

    I have some information like this to bring to the oncologist's office for my follow-up later this month, because it bothers me that she said it was no problem to take Benadryl and yet it appears that it IS a problem. I didn't believe it was a problem when others on this site said it was until I actually started to come upon documentation...

    Wellbutrin is also contraindicated, below:

    http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp

    Medicines to avoid while taking tamoxifen

    In the list below, the medications under the headings “Strong Inhibitors” and “Moderate Inhibitors” can inhibit CYP2D6 and interfere with the effectiveness of tamoxifen. The medications under the heading “Not Inhibitors” do not block the CYP2D6 enzyme and will not interfere with tamoxifen treatment.

    This list is incomplete and subject to change over time. Use it as a starting place and ask your doctor if any medications you are taking or that are recommended to you are compatible with tamoxifen.

    Strong Inhibitors
    Generic NamesBrand Names
    BupropionWellbutrin
    FluoxetineProzac
    ParoxetinePaxil
    QuinidineCardioquin
    Moderate Inhibitors
    Generic NamesBrand Names
    DuloxetineCymbalta
    SertralineZoloft
    DiphenhydramineBenadryl
    ThioridazineMellaril
    AmiodaroneCordarone
    TrazodoneDesyrel
    CimetidineTagamet
    SSRIs and SNRIs That Are Not Inhibitors
    Generic NamesBrand Names
    VenlavaxineEffexor
    CitalopramCelexa
    EscitalopramLexapro

    Source: Flockhart DA. ©2008. Consortium on Breast Cancer Pharmacogenomics. Indiana University School of Medicine.

  • Kleenex
    Kleenex Member Posts: 764
    edited August 2009

    Ew - the formatting fell apart - follow the link to the part of this site that talks about Tamoxifen to see a nice, easy-to read chart. Sorry!

    Coleen

  • ibeejojo
    ibeejojo Member Posts: 45
    edited August 2009
    I had the same problem and was given Ambien.  It helped but I felt sluggish in the morning on just a half of pill.  Then the stuff came out about the weird side effects some people were having.  I asked for something that has been around for awhile and got a script for Trazadone.  I take half of the lowest dose and it works for me.  No groggy effect in the morning.  At this point I only take it if I'm waiting for test results etc.  It's good to know I have it if I need it.  Take care....Jo
  • adenacb
    adenacb Member Posts: 89
    edited August 2009

    yes, yes, and yes. I've been on tamoxifen for a little over a month, switched my anti-depressant from Zoloft to Celexa (which doesn't interfere with the tamox) and I'm having the exact same thing: waking in the middle of the night, can't get back to sleep, hot, cold, etc. My doc prescribed some Ambien but even 1/2 pill makes me groggy all day. At least we are in good company!

  • lbrewer
    lbrewer Member Posts: 766
    edited August 2009

    I felt sluggish with the Ambien Extended but not just the 10mg regular version.  It only lasts about 4-6 hrs but its really enough to get me thru the night.  The generic is zolpidem so its a lot cheaper than the prescription Ambien too!

  • dash
    dash Member Posts: 766
    edited August 2009

    I can sympathize as I was sleepless in the first few months on tamoxifen, too. When I did fall asleep, the super hot flashes would wake me up. I felt miserable, cranky, on edge, and tired like the walking dead. I did try melatonin, ambien, nothing really worked. I was taking tamoxifen with dinner because I was on another med that needed to be taken early in the day and not with tamox. I have since gone off the other med and now take tamox in the am. I also keep my bedroom very cool-- lots of fans--my kids call it a wind tunnel--lol! I am loving sleep again anyway. I hope you do too, soon!

  • texas94
    texas94 Member Posts: 204
    edited August 2009

    Melatonin has been my saving grace. I get the "Source Naturals" brand (white bottle, blue/black label) at Whole Foods, 2.5mg, mint flavored. Put one under your tongue and let it dissolve. Some people only need 1/2 pill, some need up to 2. Anything else makes me groggy the next day, while Melatonin makes me refreshed! I hope you find something that works!

  • juneping
    juneping Member Posts: 1,594
    edited February 2014

    i started taking tamxo since early february and now the SE kicked in. when i do fall asleep, i woke up in the middle of the night feeling hot and my back was quite moist. and when i fall back to sleep i have this very vivid dreams...i just don't feel rested well.

  • juneping
    juneping Member Posts: 1,594
    edited February 2014

    my insurance lady was calling me today and i told her i had insomnia and she told me her grandma had BC and was on some kind of hormonal therapy and she took valerian root tea which helped her. i will probably get some and report back.

  • honeybunny96
    honeybunny96 Member Posts: 120
    edited March 2014

    oh my, I'm so having a hard time sleeping.   I started Tamoxifen in mid January and for about 3 weeks now, I am having a hard time finding sleep.  I get 3-4 hours and that's total, not at a time.  I have also become sick due to lack of sleep and am experiencing muscle weakness.  I'm calling my onco today to find out.  A body can't heal when it's not sleeping. 

  • fd1
    fd1 Member Posts: 239
    edited March 2014

    For the first couple of months on Tamoxifen I had terrible insomnia.  Once my body got used to it, I started sleeping again.  I noticed the same pattern when I went off Tamoxifen to have my exchange surgery.  There is hope!!

  • honeybunny96
    honeybunny96 Member Posts: 120
    edited March 2014

    Thanks.  I'm just so sick right now and sleep would be soo beneficial.   Doc says there is no correlation to lack of sleep and tamoxifen.   Gosh, have you taken it doc?  So tired.

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    honeyb - wow you doc....i am speechless. so many of us who are taking it here complaining and he/she is saying it's not related.

  • Annie88
    Annie88 Member Posts: 196
    edited April 2015

    Hello ladies. I am so glad that I have found this board. Like you, I too am having difficulty sleeping or even staying asleep. My first month on Tamoxifen I slept great, but now the pharmacy switched brands on me to Mylen and I am exhausted. Last RX was the brand Watson, my sleep was very restful. Today I took the pill in the morning to see if that might help. I will try some of the suggestions made on here. It is really disappointing to hear that some Drs are in disbelief that insomnia is not a side effect. I have never had trouble sleeping until now. Hoping we all get rest some rest soon

  • Walkinginfaith
    Walkinginfaith Member Posts: 46
    edited April 2015

    Regarding brand names - I read on here that some ladies have issues with some brands. When i got teva brand my side effects were so much worse. i asked my pharm to go back to wstson and they did gladly. They didnt even make me finish the month.

  • Annie88
    Annie88 Member Posts: 196
    edited April 2015

    Good news, I got another RX today for the previous brand, Watson. Tomorrow will be my night to sleep. The pharmacy was able to not process itthrough my insurance, $22. It is worth every cent! My Dr said that they can make notations about the manufacturer, but not in the prescription itself. I am fine w/ that, whatever it takes!

    Walkinginfaith-,it is good that you were able to get a refund. I will skip Teva, as I don't want any more SEs

  • JJOntario
    JJOntario Member Posts: 356
    edited April 2015

    I can fall asleep but once my eyes open...I'm up, whether its 3 am or 6 am. I think it's making me cranky....like I have PMS...from lack of sleep or maybe that's a whole other SE???

  • Annie88
    Annie88 Member Posts: 196
    edited April 2015

    JJOntario- I can totally relate to your sleep issues, like you I feel very short tempered and tired. What is the manufacturer of your Tamoxifen? Whenever I have been sleeping, I am in a very light form of sleep. It is making me feel as if I have not rested for sure

  • JJOntario
    JJOntario Member Posts: 356
    edited April 2015

    Annie88 - I'm not sure of the brand name...but I think it's Tamox Citra. I can't believe I will be taking this 5 plus years....I'm really hoping things settle down so I can be "me" again :-)

  • snorkeler
    snorkeler Member Posts: 145
    edited April 2015

    At my last follow-up, the breast surgeon said that other patients have reported that taking a magnesium supplement at night helped with their sleep.

  • Annie88
    Annie88 Member Posts: 196
    edited April 2015

    Snorkeler- I have been hearing about magnesium helping with joint pain also. Maybe I will pick some up next time I am out.

  • snorkeler
    snorkeler Member Posts: 145
    edited April 2015

    I take magnesium oxide, which seems to be the most common kind, although I think magnesium citrate is supposed to be more easily absorbed.

  • Annie88
    Annie88 Member Posts: 196
    edited April 2015

    Is the magnesium in pill or liquid form?

  • snorkeler
    snorkeler Member Posts: 145
    edited April 2015

    It's Nature Made brand 400mg in giant brown capsules ("liquid softgels"). When I first opened the bottle, I was disappointed at how large they are, but I find them very easy to swallow.

  • Annie88
    Annie88 Member Posts: 196
    edited April 2015

    I am happy to report that once I switched back to Watson my insomnia has subsided. Sometimes I do wake due to being hot, but am able to get back to sleep quickly.

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