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Topic: Arimidex and Insomnia Anyone?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Oct 22, 2010 08:51AM

SherryBW wrote:

Hi:

I've been on Arimidex since July and the only side effect I can tell is that I totally cannot fall asleep at night.  My Dr. prescribed prescription sleep aids (whch work fine), but I worry about becoming addicted.  Anyone else have this problem and how do you handle it?

And, please don't tell me to play quiet music and take warm baths before going to bed!!!

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Oct 23, 2010 12:40PM rreynolds1 wrote:

When do you take it?  I would try moving the time of day you take it and see if that helps.  I haven't had that problem and take it at night.  Some have found they have better results taking it in the morning.  We are all different but we all need a good night's sleep.

Roseann

Roseann Dx 2/2/2009, ILC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Oct 23, 2010 12:47PM TNgolfer wrote:

Sherry,

OMG....insomnia is the worst.  I am having such sleep issues.  I have tried blaming everything else, but I believe Arimidex is it.  Also having mood issues and depression which I am also convinced has to do with Arimidex.  I take my Arimidex in the morning, but lately am becoming non-compliant.  I actually am thinking of not taking it for a while and see if there is a difference in the mood and sleep issues.  I am not convinced this med does what it is supposed to anyway.  Would love to hear from anyone who stopped the Arimidex.  I think there is a lot "they" don't no.  The statistics on recurrence that they quote are for those that took hormone therapy....I don't think anyone follows those who refused it or quit it.

Diag PILC 11/19/09, 2cm Grade 2, Stage II, SNB, AND, 0/4 nodes, ER+/PR+/Her2-, BilatMX 1/28/10, Immed Recon: TE's. Oncotype Dx score 19; no chemo; Arimidex. Exch surgery 5/14/10; Rt Nipple Recon 10//15/10.
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Oct 23, 2010 01:01PM Shrek4 wrote:

I had big issues with insomnia and Arimidex. I found that if I take it right before going to bed, most of the times I can sleep and I don't wake up during the night. I'm planning on getting some melatonin to help when this doesnt' work.

Just out of curiosity, are you taking the brand or the generic? I am taking the generic.

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Oct 26, 2010 02:57PM TNgolfer wrote:

Day,

I was taking the brand, but as soon as the generic became available, the pharmacy switched me over to the generic (ins company rules).  I didn't notice a difference, and talked to the pharmacist at great length....he said most med's are made out of the country and they still have to abide by FDA rules....he wasn't concerned and told me there would be little if any difference at all.

But still can't get to sleep and if I do, I wake at least 4 times a night.  I do take it in the morning (when I take it)....maybe I will try taking it at night.

Thanks

Marianne

Diag PILC 11/19/09, 2cm Grade 2, Stage II, SNB, AND, 0/4 nodes, ER+/PR+/Her2-, BilatMX 1/28/10, Immed Recon: TE's. Oncotype Dx score 19; no chemo; Arimidex. Exch surgery 5/14/10; Rt Nipple Recon 10//15/10.
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Oct 28, 2010 08:33PM deprazy wrote:

I also started Arimidex in July and am suffering from insomnia!  Oncologist gave me an rx for ambien, but am concerned about taking it every night - but on the other hand, if I don't sleep, I can't function!  Only other side effects seem to be fatigue (but is that after effects of chemo and radiation or just menopause?) and constipation.....yikes!  Does this ever end?????

Dx 9/25/2009, ILC, 2cm, Stage IIB, Grade 1, 1/13 nodes, ER+/PR+, HER2-
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Jun 16, 2012 12:32PM GrandmaDee wrote:

OMG, I have been on generic Arimidex since Feb. 2012. No chemo or radiation therapy was needed for my breast cancer. I have been taking the medication in the morning and will definitely try switching to bedtime. Last night, or I should say "morning" I was awake until 4:30 at which time I ate a peanut butter sandwich and the carbs knocked me out. Let's see, I will be depressed, crabby, 400 lbs. but cancer free!!! My sister and I have the same type of cancer, invasive caused by estrogen, and she has been cancer free for 7 years now and did not take this medication. I will choose to keep on taking it because I feel it is important to my future health and will try to resolve this issue of insomnia. Don't much care for the constipation either. I worked in the medical field for 30 years and don't automatically trust doctors or pharmaceutical companies either. Was this stuff made in China perhaps??? God's blessings of good health to all of you.

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Jun 16, 2012 06:12PM wallycat wrote:

I always took my arimidex/generic at 8:45; with it, I took 20 mg. of melatonin.  By 9:30, 10pm, I was yawning and could not wait to get to bed!  Not every day...but most days, the melatonin is a lifesaver.  I started taking it with the tamoxifen.  After reading all the melatonin studies, I still take it.  I will never stop.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jun 20, 2012 08:47AM knittingmama wrote:

I am on a 1 mo vacation from Arimedex (generic form) for severe SE's. My sleep this week is back to almost normal. I only woke up 1X last night (normally 4X or more) and no sleep aids. I take Melatonin before bedtime.

Faith! Not fear! BRCA-2+, Bi-lateral, no recon. Dx 11/16/2010, ILC, Stage IIIB, Grade 2, 6/11 nodes, ER+/PR-, HER2- Surgery 12/6/2010 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 1/23/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 7/5/2011 Breast, Lymph nodes Surgery 11/3/2011 Prophylactic ovary removal Hormonal Therapy 11/15/2011 Hormonal Therapy 4/17/2012 Arimidex (anastrozole)
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Jul 18, 2012 06:24AM 1dancinginthedark wrote:

I have been taking Arimidex for two weeks with sleep aids.  I am writing this at 3:23 a.m..  I sleep about one out of 3 to 4 nights because I am completely sleep deprived.  Melatonin is better than anti-anxiety drugs?

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Aug 1, 2013 04:31AM susanmurray wrote:

I have been taking Anastrozole since September 6, 2013.  For the past few months, I have had insomnia and restless leg syndrome.  I am now at the point in which I don't get to sleep until 4:30 in the a.m.  Sometimes I can sleep until 11:30, sometimes only a couple of hours.  Last night I tried, for the first time, the generic form of Ambien, 5 mg, and it didn't work at all. I use Motrin and Lorazepan, but I still have my days and nights mixed up.  Melatonin doesn't seem to help.  This may sound crazy, but a couple of applications of Mineral Ice relieved the restless legs tonight but, it's 4:30 and I'm still up.  At my next visit with my oncologist, I will ask about getting a vacation from the Anastrozole.  I can't remember the last time I fell asleep at a reasonable hour.  Any ideas?

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Aug 1, 2013 06:37AM Timbuktu wrote:

TN, It's 5;40 here and I've been up most of the night and am depressed.  I've been on "vacation" from arrimidex for 2 weeks.  The Dr told me to take a month off, for joint problems.  But they know that it makes you depressed and when on it i tear up a lot.  I'm not normally a crier but Arrimidex makes me cry.  It's hard to believe.  I was strong throughout treatment.  Then, after 5 months on Arrimidex I broke down crying in the drs office.  The Dr and nurse just shook their heads and said "That's Arrimidex".  When I went off of it the tears shut down like ihad turned a faucet.

Good luck...to all of us!

Dx 7/9/2011, IDC, 2cm, Stage IIA, Grade 2, 1/5 nodes, ER+/PR+, HER2-
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Aug 1, 2013 06:40AM Timbuktu wrote:

Grandma Dee you made me laugh out loud, truly.  I am sitting here with my stomach growling, knowing that if I eat some carbs I have a chance of getting to sleep.  But since diagnosis I have gained 50 pounds and now I have diabetes!  No, it never ends!

Dx 7/9/2011, IDC, 2cm, Stage IIA, Grade 2, 1/5 nodes, ER+/PR+, HER2-
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Oct 9, 2013 01:21PM helenslight wrote:

I've been on the generic of this drug for a short time and I am on my third night of not sleeping. I am lucky, I have an online job that I can get my make up on at anytime during the day or night and work it. I stay up for a while just to see if I get tired. At about 4 am I get ready and go to work. Then after 2 hours I try and sleep. I am almost on my last year. I was on Aromisin for most of these years but suddenly all those side effects got a lot worse and I started getting daily migraines. I went on Tamoxofen and the joint and muscle pain on top of my Fibromyalgia was unbearable. Now the insomnia is triggering the Bipolar 2 mood swings and I could wind up in the hospital because I am getting suicidal.. I am seriously considering giving up all the meds for this last year. To top it all off, when I gained 30 pounds in 2 months when I started the Fermara 4 years ago, I relapsed with an eating disorder I had in my teens and 20s. So I am basically fucked up but, cancer free. I am starving, fat, sleepy, and mood swingy...fun! LOL But I am seriously grateful I am cancer free. I do not want cancer.

I am talking to my therapist tomorrow about going off the meds because of the mood swings. When I go down I am starting to have not so nice thoughts. She has really been encouraging me to stay on the cancer meds. We'll see.

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Oct 19, 2014 04:06AM - edited Oct 19, 2014 04:22AM by mimosasilk

I have been taking  Arimidex for 2 years 

and yes, I have nights where I wake up around 1am and then I can back to sleep unless I take a sleep aid.  I can fall asleep easily without aid but then wake up and can't fall back asleep unless I take something.  And then I can go a month without any aid at all, like my body just snaps out of it but then it's back to sleeplessness again.  I used to feel guilt for taking aid but now understand it's more important to get sleep then take a pill, but I still have anxiety when I still can't seem to sleep so I take an alphazolem for the anxiety and that helps me sleep as well.

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Oct 19, 2014 10:00PM vbishop wrote:

Take a warm bath and play quiet music before going to bed....

Just kidding!  No insomnia for me and I've been on Arimidex  for about one year now.

vjbishop.blogspot.com Surgery 10/8/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 9/2019, ILC, Left, Stage IV, metastasized to liver/other, Grade 2, 0/3 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Chemotherapy Chemotherapy AC + T (Taxol)
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Oct 19, 2014 11:26PM QCA wrote:

I'm also in my last year of arimidex and I frequently have insomnia, and until now I hadn't realized it was a side effect.  So, apparently we need more to deal with besides the thinning hair, the bone and joint pain, inability to walk reasonable distances, and hot flashes?  And crying at the drop of a hat too!  I'm glad I'm almost at the end!

Kathy

Kathy Dx 7/7/2010, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Nov 12, 2014 08:56PM SoutherMother wrote:

When I started on Arimidex, I took it in the morning.  I had horrible bone ache by mid afternoon and felt like I was in my 80's not my 40's.  But I slept well.  I tried taking it at night and couldn't sleep a wink.  Finally tried taking it around Noon to 2:00 pm and I avoided all side effects.  I learned this from someone on the boards back in 2008.  I stayed cancer free for those five years.  It was worth the trial and error.

Dx 9/2007, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/2/2007 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 10/2/2007 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/2/2007 Breast Hormonal Therapy 3/2/2008 Arimidex (anastrozole) Dx 9/2014, ILC, Both breasts, 9/13 nodes, ER-/PR-, HER2- Chemotherapy 10/17/2014 AC Chemotherapy 12/29/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Dx 3/2016, ILC, Stage IV, metastasized to bone, ER-/PR-, HER2- Surgery Mastectomy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 5, 2015 03:41AM Georgiagail wrote:

I'm rounding the corner on two years on Arimidex and have started the insomnia business about a month ago. Writing this at 3:30 in the morning. I take it in the morning. Will try some of the suggestions posted here regarding changing times to take it to see if this helps. Thanks for these! Been through some bone pain issues (already have a right shoulder that's been giving me fits) and the pain medication causes lovely side effects with bowel habits.

The last time I had very bad insomnia (other than the usual "teenage children angst") was following an assault back almost 30 years ago. I went through a six month period where I slept perhaps one or two hours a night. I remember thinking that at some point I should collapse from lack of sleep sometime during the day but never did. It was amazing. This is just plain frustrating because I don't want to give up on the Arimidex but boy, insomnia really isn't fun! Between the insomnia, the bone pain and the constipation I get up wondering which body part I'm going to moan about that day...I'm 63 years old and I keep remember what Betty Davis used to say "Old Age Ain't For Sissies".

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Jun 5, 2015 08:27AM Moderators wrote:

Hi Georgiagail, welcome to Breastcancer.org! We're sorry that you have to be here, but we are glad that you found and joined us and this wonderful group.

About insomnia, besides the helpful advice you'll read from other here, you might be also interested in these articles from our main site.


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Jun 5, 2015 01:25PM grammakathy wrote:

The only times in my life when I have had insomnia was when I was pregnant and when I was on Arimidex.  I stopped it for three months and the insomnia stopped immediately also.  My MO started me on Tamoxifen and I haven't had any issues with that drug.  It seems to be something that hits each of us individually.  Good luck!

Oncotype DX score of 11; 5'10" tall, 155#, Allergan 410 FF425 implants, diagnosed at age 63, 3D tattoos on 23 Jun 2015 Dx 10/2/2013, IDC, Left, 2cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Hormonal Therapy 11/26/2013 Arimidex (anastrozole) Surgery 2/25/2014 Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 9/23/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 12/18/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 11, 2015 04:12AM Sinsin wrote:

Hiya Georgiagail!

I've been on Arimidex since January but just recently stopped taking another drug that had a side effect of fatigue. In fact, that drug can be taken as a sleep aid without worry of addiction or crazy side effects! (Minus the fatigue. LOL) In case you wish to try it, it's Seroquel.

With that being said, I am now Googling Arimidex and insomnia because I have never had an issue with sleeping and here I lie at 1:00am in bed, wide awake for the third night in a row. I can make myself fall asleep, but it's horrible as I wake up continuously. The insomnia started as soon as I stopped taking the other drug. I can't help but think it has to be the Arimidex. If this continues, I am going back on my Seroquel.

I follow the Nemo Mantra, "Just keep swimming." Dx 1/14/2014, IDC, Stage IIB, Grade 2, 3/3 nodes, ER+/PR+, HER2- Surgery 2/11/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 3/16/2014 Cytoxan (cyclophosphamide), Ellence (epirubicin) Chemotherapy 4/27/2014 Taxol (paclitaxel)
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Nov 25, 2015 06:04AM colourpurple333 wrote:

I've been reading comments on arimidex causing insomnia and restless leg syndrome.

I started searching on google to see if I could find any information on this as I have been assessing everything I can think of and the only thing that I could think of that had changed after I had finished 6 months of chemo and before I started 30 rounds of radiation was that I had started taking arimidex (anastrozole ) .

I haven't been able to fall asleep for the whole time that I have been taking the arimidex. I toss and turn and have restless leg syndrome and rarely fall asleep before 3 or 4 o'clock in the morning, and then keep waking every hour or so and watch the clock continuously until daylight..

I seem to be functioning ok during the day but feel so tired when I go to bed just to toss and turn most of the night.

Apart from that I am feeling the best I have felt for the whole year as had my lumpectomy in February, followed by the 6 months of chemo and then 6 weeks of radiation.

I was so pleased to read all the posts about arimidex and insomnia because I thought it was only me and felt very alone.

I have my first follow up appointment next week with my oncologist and will talk to him about it.

So good to be able to talk to women that understand, we can all encourage each other instead of bearing all of our anxieties alone.

Kindest Regards to all,

Loris.


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Nov 25, 2015 08:51AM Moderators wrote:

Dear colourpurple333,

Welcome to our community. We are glad that you found us and hope that you will stay connected here. Keep us posted about your follow up appointment next week. The Mods

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May 17, 2016 05:24AM teege1 wrote:

I too am having terrible in somnia even tho I moved my time of taking it to morning. Ambien has only helped to some degree. Before I quit I am going to request the non-generic form and see if that helps. I cannot believe there are no studies comparing recidivism rates of those taking arimidex vs those who don't. This is a subject for research before stopping the medication for me

Dx 2/2/2016, DCIS/IDC: Mucinous, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- Dx 2/2/2016, IDC: Mucinous, Right, 2cm, Stage IIA, Grade 1, ER+/PR- Surgery 3/10/2016 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 6/10/2016
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May 17, 2016 05:35AM teege1 wrote:

  • Try 250 mg of magnesium at bedtime. Also, take your melatonin about 2 pm as it should start to work 6-8 hours later. Good lick! I too am tired of insomnia and plan on trying the non-generic form of Arimidex before quitting.


Dx 2/2/2016, DCIS/IDC: Mucinous, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- Dx 2/2/2016, IDC: Mucinous, Right, 2cm, Stage IIA, Grade 1, ER+/PR- Surgery 3/10/2016 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 6/10/2016
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May 17, 2016 09:15AM dtad wrote:

Hi everyone. Well its pretty obvious that insomnia is a SE of arimidex! Ive decided not to take an anti hormone and now there is another reason not to! Sleep is so important to your overall health. For those of you that want to continue on it, I would suggest magnesium and melatonin also.

TNgolfer....Sorry you are having so many SE from arimidex. Im one who refused the anti hormones for many reasons. Please feel free to PM if you want to talk more about it. I don't think you will ever see a study on recurrence rates for those who refuse it. Who would fund it? Certainly not the pharmaceutical companies! I respect all the tough choices we have to make. We all have to decide whats best for us individually. Good luck to all......

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 3, 2016 10:29AM - edited Jul 3, 2016 10:38AM by SleeplessinNJ

Ladies, thank you for sharing your Arimedex stories. I have been on Arimedex for 11 months now and am grateful that my joint pain is minimal, but my insomnia and anxiety have been off the charts. Like some of you, I gained weight, 30 pounds from time of diagnosis. I was a happy 125 pounds when diagnosed at age 63. I also have a great deal of fatigue. Diet and exercise were not happening when my sleeplessness and fatigue were out of control. I was also caring for me elderly mother, at the time; thankfully is a late sleeper, too.

I tried an antidepressant on the advice of my onco PA and that just increased my insomnia to the 4 am level many of you describe. I tried Sleepytime Tea, melatonin, whiskey, wine, and NyQuil Sleep Aid; nothing worked. I'd fall asleep around 4 and get up around 11; but sometimes had a hangover from the whiskey usage. I finally asked my GP for Ambien. She also had me tested for a thyroid problem; which I did not have.

I was reluctant to go down the Ambient route, but it was a game changer. My sleep-wake hours are now normal. I started using the Aging Backwards tapes to loosen up some back stiffness, I was experiencing. Also, with a regular schedule, I can manage a walk most days. I have lost 8 pounds in 74 days, 22 more to go. My fatigue is still a problem but it doesn't stop me in my tracks as much. I recently started taking the Arimedix in the evening and have noticed a decline in my overall fatigue. I have not conquered my anxiety and irritability yet, but reading Pema Chodron has put a dent in them.

Good luck to all of us. May we all get through this.

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Jul 3, 2016 07:46PM Moderators wrote:

Hi SleeplessinNJ - Welcome to Breastcancer.org, and thank you for sharing your Arimedex-insomnia story too!

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Jan 20, 2017 04:48PM LittleNell65 wrote:

I'm with you - I started taking in September last year after my mastectomy. Things were ok for the first couple of months post-surgery as I recovered, but the last month or so I have experienced the worst insomnia and restless legs. I'm barely sleeping and it's doing my head in. I've always been a pretty good sleeper so this is awful. I have a very cognitively demanding job, so not sleeping is a major issue. I see the oncologist in a couple of weeks so will ask about possible treatments. Melatonin doesn't seem to work. A shower before bed is the only thing that is vaguely useful, but it doesn't stop me waking again at 3.30 am (and not sleeping again).

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Mar 21, 2017 06:06PM - edited Mar 21, 2017 06:10PM by nervousnelly1958

Thank you all for sharing!! I just had a mastectomy of my right breast and now the doctors want me to take Arimidex. I am so against it as I have bipolar disorder and fear that this drug will mess up my body chemistry. Am also against taking Arimidex as it causes insomnia, which is horrific for a bipolar patient. I had Stage 1A ER/PR+ invasive/no lymph nodes affected. I need to make a decision soon whether or not to take Arimidex. Reading these posts make me want not to take the drug even more. There must be a safer way to slow down the production of estrogen without resorting to Arimidex!

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