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Topic: Insomnia with tamoxifen?

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Aug 6, 2009 12:57AM

Linda37 wrote:

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

Dx 3/19/2009, IDC, 1cm, Stage II, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Aug 6, 2009 10:47AM Kleenex wrote:

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.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 6, 2009 10:54AM lexislove wrote:

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

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

Dx:2007, 2B, Triple+, June 2008:Lupron,Zometa,Tamox.Jan 2010:Poor metabolizer of Tamox switch to Femara.Feb 2010: cyp2d6 test reliable? Back to Tamox. Ooph soon.
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Aug 6, 2009 10:59AM Linda37 wrote:

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.......

Dx 3/19/2009, IDC, 1cm, Stage II, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Aug 6, 2009 12:51PM Kleenex wrote:

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:

www.breastcancer.org/treatment...

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 InhibitorsGeneric NamesBrand NamesBupropionWellbutrinFluoxetineProzacParoxetinePaxilQuinidineCardioquinModerate InhibitorsGeneric NamesBrand NamesDuloxetineCymbaltaSertralineZoloftDiphenhydramineBenadrylThioridazineMellarilAmiodaroneCordaroneTrazodoneDesyrelCimetidineTagametSSRIs and SNRIs That Are Not InhibitorsGeneric NamesBrand NamesVenlavaxineEffexorCitalopramCelexaEscitalopramLexapro

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

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 6, 2009 12:52PM Kleenex wrote:

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

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 7, 2009 10:34PM ibeejojo wrote:

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
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Aug 8, 2009 12:10PM adenacb wrote:

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!

Oncotype 15 (10%), BRCA1/BRCA2 neg., lumpectomy, RADS, Tamoxifen Dx 1/9/2009, IDC, Right, 3cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Aug 8, 2009 01:21PM lbrewer wrote:

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!

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Aug 10, 2009 10:02PM dash wrote:

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!

Lots of people talk to animals...Not very many listen, though...That's the problem. ~The Tao of Pooh
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Aug 26, 2009 11:31AM texas94 wrote:

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!

ILC 10/2007 age 36 (BMX, 410 gummies, 3 ½yrs Tamox, Oncotype 19). ILC recurrence 6/2014 age 43 (6mos Taxol & FAC chemo, ALND, LUMP, biopatch left sac to keep implant in place, 33 Rads, Oophorectomy & 10yrs Femara). I also had Thyroid Cancer in 2004! Dx 10/19/2007, ILC, 1cm, Stage IB, 0/1 nodes, ER+/PR+, HER2- Dx 6/19/2014, ILC, 1cm, Stage IIIC, 11/19 nodes, ER+/PR+, HER2-
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Feb 26, 2014 01:33PM juneping wrote:

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. Sick

juneping.wordpress.com/ Dx 11/15/2013, DCIS Dx 11/15/2013, IDC, 6cm+, Stage IIIA, Grade 2, 2/35 nodes, ER+/PR+, HER2-
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Feb 26, 2014 08:38PM juneping wrote:

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.

juneping.wordpress.com/ Dx 11/15/2013, DCIS Dx 11/15/2013, IDC, 6cm+, Stage IIIA, Grade 2, 2/35 nodes, ER+/PR+, HER2-
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Mar 7, 2014 08:48AM honeybunny96 wrote:

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. 

~Melissa - I have HEALTHY, I am HAPPY, I am WHOLE! Visit my journey: www.caringbridge.org/visit/mdavis Dx 5/15/2013, IDC, 1cm, Stage IB, Grade 3, 1/2 nodes, ER-/PR+, HER2- Surgery 5/29/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Chemotherapy 7/12/2013 AC + T (Taxol) Radiation Therapy 12/23/2013 Breast, Lymph nodes Hormonal Therapy
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Mar 7, 2014 09:09AM fd1 wrote:

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!!

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Mar 7, 2014 10:33AM honeybunny96 wrote:

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.

~Melissa - I have HEALTHY, I am HAPPY, I am WHOLE! Visit my journey: www.caringbridge.org/visit/mdavis Dx 5/15/2013, IDC, 1cm, Stage IB, Grade 3, 1/2 nodes, ER-/PR+, HER2- Surgery 5/29/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Chemotherapy 7/12/2013 AC + T (Taxol) Radiation Therapy 12/23/2013 Breast, Lymph nodes Hormonal Therapy
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Mar 7, 2014 10:40AM juneping wrote:

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.

juneping.wordpress.com/ Dx 11/15/2013, DCIS Dx 11/15/2013, IDC, 6cm+, Stage IIIA, Grade 2, 2/35 nodes, ER+/PR+, HER2-
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Apr 5, 2015 12:10PM Annie88 wrote:

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

Dx 10/8/2014, IDC, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 10/8/2014, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/10/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/18/2015 Breast Hormonal Therapy 2/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx
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Apr 6, 2015 07:09PM Walkinginfaith wrote:

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.

Dx 2/14/2013, IDC, 4cm, Grade 2, 0/7 nodes, ER+/PR+, HER2+ Targeted Therapy 3/6/2013 Herceptin (trastuzumab) Chemotherapy 3/6/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/16/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx IDC, Grade 2, ER+/PR+, HER2+
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Apr 6, 2015 07:39PM - edited Apr 6, 2015 09:03PM by Annie88

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

Dx 10/8/2014, IDC, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 10/8/2014, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/10/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/18/2015 Breast Hormonal Therapy 2/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx
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Apr 6, 2015 08:15PM JJOntario wrote:

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???

47yrs old. Oncotype Score 16. 43 at dx - existing implants. Basal cell carcinoma-2019 Dx 12/1/2014, IDC, 1cm, Stage IA, 0/13 nodes, ER+/PR+, HER2- Surgery 12/1/2014 Lymph node removal: Right, Sentinel Surgery 12/7/2014 Lumpectomy: Right Hormonal Therapy 1/29/2015 Radiation Therapy 3/29/2015
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Apr 6, 2015 08:34PM Annie88 wrote:

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

Dx 10/8/2014, IDC, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 10/8/2014, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/10/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/18/2015 Breast Hormonal Therapy 2/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx
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Apr 6, 2015 08:50PM JJOntario wrote:

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 :-)

47yrs old. Oncotype Score 16. 43 at dx - existing implants. Basal cell carcinoma-2019 Dx 12/1/2014, IDC, 1cm, Stage IA, 0/13 nodes, ER+/PR+, HER2- Surgery 12/1/2014 Lymph node removal: Right, Sentinel Surgery 12/7/2014 Lumpectomy: Right Hormonal Therapy 1/29/2015 Radiation Therapy 3/29/2015
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Apr 7, 2015 09:50AM snorkeler wrote:

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.

Dx 1/2012, IDC, <1cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast
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Apr 7, 2015 05:22PM Annie88 wrote:

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

Dx 10/8/2014, IDC, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 10/8/2014, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/10/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/18/2015 Breast Hormonal Therapy 2/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx
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Apr 8, 2015 04:02PM snorkeler wrote:

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

Dx 1/2012, IDC, <1cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast
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Apr 10, 2015 09:16PM Annie88 wrote:

Is the magnesium in pill or liquid form?

Dx 10/8/2014, IDC, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 10/8/2014, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/10/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/18/2015 Breast Hormonal Therapy 2/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx
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Apr 11, 2015 05:57AM snorkeler wrote:

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.

Dx 1/2012, IDC, <1cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast
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Apr 11, 2015 09:28AM Annie88 wrote:

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.

Dx 10/8/2014, IDC, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 10/8/2014, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/10/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/18/2015 Breast Hormonal Therapy 2/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx

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