Can't sleep-went back on Tamoxifen

Options
disneyfan2008
disneyfan2008 Member Posts: 6,583 Member
in Breast Cancer #1
Anyone else have same issue on MED? I was off it for about 3 mths while prepping for hysterectomy and now back on it! This TIME I am paying more attention to side effects!

Denise

Comments

  • mjjones453
    mjjones453 Member Posts: 155
    #2
    Options
    Tamoxifen
    Hi Denise, I was off of Tamoxifen for one month, and then went back on it. Funny thing is that I had Hotflashes, Bone pain, Ovarian cysts, and other minor side affects. After going back on it, all of the side effects are gone. I can't even say if I am having hot flashes! What is with that? I am not complaining, but wondering if it is working like it should. Hopefully you will be able to tolerate it better this time. Mary
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #3
    Options
    mjjones453 said:

    Tamoxifen
    Hi Denise, I was off of Tamoxifen for one month, and then went back on it. Funny thing is that I had Hotflashes, Bone pain, Ovarian cysts, and other minor side affects. After going back on it, all of the side effects are gone. I can't even say if I am having hot flashes! What is with that? I am not complaining, but wondering if it is working like it should. Hopefully you will be able to tolerate it better this time. Mary

    well I was off it for 3mths
    well I was off it for 3mths to see if helped prior to hysterectomy-now back on it..but I lay for hours...awake...i can fall asleep right away then up and stay up..
  • Punkindo
    Punkindo Member Posts: 113
    #4
    Options
    Me too
    I think part of my problem may be that I take my Tamoxifen in the evening, but honestly it is the only time I can remember to take it. I fall asleep ok, but wake up multiple times and have hot flashes all night. I move arround from my bed, to the couch, to my son's bed, back to my bed,...... When I get hot and wake up and go to a different (cool) bed I can fall asleep for a while till I get hot again. The Dr doesn't want to give me any sleeping medicine and says that I can take a benedryl occasionally to help me sleep. Sometimes it works, sometimes it doesn't. I am too scared not to take it. Even with the side effects I feel like it is keeping the cancer from having a fuel source....

    I put scrabble (words with friends) on my I-phone so when I am up at night I have something to do. If anyone wants to play, look up Punkindo :)
  • camul
    camul Member Posts: 2,537
    #5
    Options
    Same thing for me with Evista
    I was on tamoxifen. Stopped that, then went on Evista. Was off it for a month (was so swollen), now went back on it 5 days ago and can't sleep. Fall asleep, then wake and am up most of the night. Today, I took it about noon, so hoping I can sleep tonight. I have been so wired the last week, but it was also my bi week on the chemo, so don't know if I just feel too good to sleep! Also started last week on Gabepentin so don't know if that is hyping me up! But they told me to take GAb at night as it makes you tired??

    Who knows, but during the day I am not tired at all either!
    ~Carol
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #6
    Options
    camul said:

    Same thing for me with Evista
    I was on tamoxifen. Stopped that, then went on Evista. Was off it for a month (was so swollen), now went back on it 5 days ago and can't sleep. Fall asleep, then wake and am up most of the night. Today, I took it about noon, so hoping I can sleep tonight. I have been so wired the last week, but it was also my bi week on the chemo, so don't know if I just feel too good to sleep! Also started last week on Gabepentin so don't know if that is hyping me up! But they told me to take GAb at night as it makes you tired??

    Who knows, but during the day I am not tired at all either!
    ~Carol

    Carol, started out on 800 mg
    Carol, started out on 800 mg of gabapentin last feb and now the pain dr. has me on 1800 mg/day. I don't know about you, but I can get a very tired, loopy, drugged feeling after doses. But we all know that meds effect us all differently. I told my pain dr. how my neuropathy will wake me up at night, so he prescriped 25 mg of amytriptoline at night. I guess it's an antidepressent. I still have problems actually falling asleep at night, but when I do fall asleep, I am out and that feels good.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #7
    Options
    Punkindo said:

    Me too
    I think part of my problem may be that I take my Tamoxifen in the evening, but honestly it is the only time I can remember to take it. I fall asleep ok, but wake up multiple times and have hot flashes all night. I move arround from my bed, to the couch, to my son's bed, back to my bed,...... When I get hot and wake up and go to a different (cool) bed I can fall asleep for a while till I get hot again. The Dr doesn't want to give me any sleeping medicine and says that I can take a benedryl occasionally to help me sleep. Sometimes it works, sometimes it doesn't. I am too scared not to take it. Even with the side effects I feel like it is keeping the cancer from having a fuel source....

    I put scrabble (words with friends) on my I-phone so when I am up at night I have something to do. If anyone wants to play, look up Punkindo :)

    I take mine first thing in
    I take mine first thing in the am and no difference at all..still wired about 2 am...i move from bed to couch to bed..do laundry (very quiet machine) write bills etc..I have told my gastro, GYNO, onoclogists (2 of them) that I can't sleep and no one has offered any suggestions
  • robang13
    robang13 Member Posts: 333
    #8
    Options
    cinnamonsmile said:

    Carol, started out on 800 mg
    Carol, started out on 800 mg of gabapentin last feb and now the pain dr. has me on 1800 mg/day. I don't know about you, but I can get a very tired, loopy, drugged feeling after doses. But we all know that meds effect us all differently. I told my pain dr. how my neuropathy will wake me up at night, so he prescriped 25 mg of amytriptoline at night. I guess it's an antidepressent. I still have problems actually falling asleep at night, but when I do fall asleep, I am out and that feels good.

    @carol, When I was on
    @carol, When I was on gabapentin for chronic pain I had horrid side effects: leg cramps from hell, breathing problems, and my ability to concentrate was gone. I had to stop after 4 months. I am now on amytriptoline also. It's supposed to help you to sleep. It IS an antidepressant but in way higher doses. At this dose it does nothing for depression. I am supposed to take 2 at night but as soon as I do the legs cramps come back, I can't walk up stairs cause my legs feel like they are 100lbs each, so I stay on one pill.How are your side effects?

    @Denise, is that why I'm having trouble sleeping? I never gave a thought to it being from the tamoxifen! I do have sleeping pills that I take when I toss for hours and they work some. There is a natural pill for sleeping called melatonin. It's what our body produces for us to sleep. I used to take them before all this and it was enough to help me fall asleep. If you don't want to go on sleeping pills, maybe ask your doctor about them? I toss some night for hours then can't get out of bed in the mornings!! Just last night I didn't fall asleep till after 3am! The thought of 5 more years of this is unsettling!!

    Angela
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #9
    Options
    disneyfan2008 said:

    well I was off it for 3mths
    well I was off it for 3mths to see if helped prior to hysterectomy-now back on it..but I lay for hours...awake...i can fall asleep right away then up and stay up..

    Sorry that you can't sleep
    Sorry that you can't sleep now Denise. Hoping you can get something to help you.


    Hugs, Jan
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #10
    Options
    robang13 said:

    @carol, When I was on
    @carol, When I was on gabapentin for chronic pain I had horrid side effects: leg cramps from hell, breathing problems, and my ability to concentrate was gone. I had to stop after 4 months. I am now on amytriptoline also. It's supposed to help you to sleep. It IS an antidepressant but in way higher doses. At this dose it does nothing for depression. I am supposed to take 2 at night but as soon as I do the legs cramps come back, I can't walk up stairs cause my legs feel like they are 100lbs each, so I stay on one pill.How are your side effects?

    @Denise, is that why I'm having trouble sleeping? I never gave a thought to it being from the tamoxifen! I do have sleeping pills that I take when I toss for hours and they work some. There is a natural pill for sleeping called melatonin. It's what our body produces for us to sleep. I used to take them before all this and it was enough to help me fall asleep. If you don't want to go on sleeping pills, maybe ask your doctor about them? I toss some night for hours then can't get out of bed in the mornings!! Just last night I didn't fall asleep till after 3am! The thought of 5 more years of this is unsettling!!

    Angela

    Disney 2008
    I think you just went back to work. How can you do that with not being able to sleep.

    Tamoxifin hasn't bothered me but I only sleep about 5 hours.Sometimes mnore but my average.Then I get up and don't stop.I just wear myself out.As soon as my head hits the pillow I am out.When I wake up 5 hours later I just lay there for awhile.

    Lynn Smith
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #11
    Options
    Lynn Smith said:

    Disney 2008
    I think you just went back to work. How can you do that with not being able to sleep.

    Tamoxifin hasn't bothered me but I only sleep about 5 hours.Sometimes mnore but my average.Then I get up and don't stop.I just wear myself out.As soon as my head hits the pillow I am out.When I wake up 5 hours later I just lay there for awhile.

    Lynn Smith

    I dont' think has to do with
    I dont' think has to do with work...first of all when I went back worked one day..called in to take daughter to ER (admitted) then work 3 days...long weekend for july 4 worked 2 days then vacation for 9 days..so I broke back into work very very easy..hehe...and summer school much less busy then regular school...even on vacation I would lay awake for hours...
  • deeb111
    deeb111 Member Posts: 141 Member
    #12
    Options
    trouble sleeping hot flashes
    Oh yes what a wonderful time in the world of tamoxifen while it helps us it also makes us crazy form side effects so yes I think alot of us here have the same kind of fun
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #13
    Options
    deeb111 said:

    trouble sleeping hot flashes
    Oh yes what a wonderful time in the world of tamoxifen while it helps us it also makes us crazy form side effects so yes I think alot of us here have the same kind of fun

    my big side effect was removed
    so lack of sleep ok...thickening of uterus and bleeding years post meno..so surgerytook care of it..

Discussion Boards