Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Hot Flash Forum!

1383941434456

Comments

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited December 2012

    I started hot flashes and flushes even before I got cancer at the age of 42. It has been a little over a year since I had my ovaries removed. The hot flashes were awful and horrible. Lately I have noticed that they have tamed down. Last winter I had the heat set at 64 and sometimes even 63 degrees. And I live in Wisconsin! This winter, I have had the heat at 64 at night, and 65-67 during the day.

    This winter, I am noticing that the hot flashes are less in quanity and quality. They seem to be the worst after I take a shower and about an hour or two before I start waking up or when I am cooking or doing dishes.

    I just wanted to let the ladies know that had their ovaries removed that there is hope...

    (I am still taking black cohosh and evening primrose oil though. Please consult your doctor if you are estrogen positive because black cohosh can act like estrogen. My docs ok'ed me for it cuz I had DCIS, clean margins and a BMX).

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited December 2012

    Happy New Year Dear Friends, Let us be dry in the new year! Health , Wealth, Contentment,and Happiness to be with you all your days. ((((((((HUGS)))))))) sheila

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited January 2013

    kayb hellooo, would like to cut and paste your research on tamox and CYP to the following thread. Then I would C&P my post after yours. Okay???????? sheila

    http://community.breastcancer.org/forum/73/topic/798301?page=1

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited January 2013

    Cool kayb, talk about fast response whew, lightening. You would have an A+++++rating on ebay if you were abuyer paying through paypal LOL.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited January 2013

    Wow, just sitting here having my second stinking hot flash in an hour, ranting, raving, sweating... and I ran across this forum!!!!!  Why haven't I seen it before, can't wait to start reading it.     CryBoy do I HATE hot flashes@#$#$!#%$#!%#!@!%$^%^%Embarassed

  • LindaKR
    LindaKR Member Posts: 1,304
    edited January 2013

    Ok - I started reading from the beginning and keeping notes - but then some of the things that you guys mentioned in the beginning started reversing themselves and may not actually work, or I shouldn't take them - Is there a synopsis somewhere? and on going list of success and failure?  I've been taking 150 mg of Effexor daily for several months now, it seemed to work at first, then stop, so my PCP kept upping my dose (she also was hoping it would help with the neuropathy pain) but at this point I don't really think it's helping, having lots of Hot Flashes and neuropathy pain has returned, so just contacted my my PCP and toldher I want to wean off of Effexor (I saw SAS's info on how to do that way back).  Then I want to give something more natural a try - took amitryptiline and nortryptiline- helped briefly, then stopped..   Also, any suggestions would be greatly appreciated!!!!!

  • swim_girl
    swim_girl Member Posts: 10
    edited January 2013

    Hi, LindaKR. Sorry you're dealing with hot flashes. They stink. I've been on Tamoxifen for 4 1/2 months and have been going to acupuncture to help with the side effects. It's hard to know for sure how much of a difference it has made since I began before I started taking Tamoxifen. That said, I did notice that the hot flashes picked back up when I missed acupuncture for a few weeks over the holidays. My acupuncturist said that alcohol, caffeine, and sugar have the biggest dietary influence on hot flashes, so I have quit drinking (for the time being--never thought I'd see the day...) and cut back on sugar. I'm still having a hard time giving up my coffee. A girl's got to have at least one vice, no?

    I've also been told that exercise can make a difference. I know that's a tough one when you're dealing with neuropathy and other crummy SEs from treatment, but it has made a difference for me.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited January 2013

    I try to stay away from processed foods (sugar, white flour...) I have noticed that even a small glass of wine can set me off, I do OK if I only drink a little coffee.  But I've been walking eveyday for about a week, today my daughter and I walked about 3 miles, and I haven't had one hot flash since I got home, and that's been about 4 hours - interesting.  Thanks for the tips swim girl.

  • Linda54
    Linda54 Member Posts: 509
    edited January 2013

    LindaKR,

    The only thing that seems to reduce the number and severity of mine are eating a clean diet...like you said you are trying to avoid processed foods, sugar, white stuff etc.   Also seems like the cooler air of winter helps also.  No magic potion for the flashes sorry to say.  I have tried different things but only the clean eating has shown improvement for me.  Over the holidays I messed up and ate sweets and things I should not have and I suffered with flashes...now that I am getting my diet back to clean I am having an easier time.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited January 2013

    LINDa kr, helloooo, what pg was that about effexor weaning, would like to put it in my "to do /remeber box" for future use when someone needs it? Forgot where I posted it.

    Linda54--yup,straying off the clean diet sure makes a change for me too. The holidays, what to do with all the goodies around erghhhh. Craving chocolate since brain surgery in March2012. Was undercontrol until holidays then ......... Now trying to avoid. mostly successful LOL

  • LindaKR
    LindaKR Member Posts: 1,304
    edited January 2013

    SAS - Like I could ever find it again - Surprised, but I was keeping notes to help me remember - and this is what you had written -

    TO ALL--------weaning off any of the SSRI's and SNRI's should be in small increments over several weeks i.e Effexor150mg>>>110 mg>>>75mg>>>37.5 mg at a time 7-10days. Then last 37.5 mg break in half approx 18mg for seven to ten days. I would even take the last 18 mg and halve for 7-10 days. If that's not clear PM me.

    My PCP gave me this weaning schedule - Taper slowly, don't be in a hurry. I'll fill 37.5 mg, go to 75 for a week, then 37.5 for a week, then every other day for a couple weeks, then twice weekly then off.

    I'm worried that hers might be a little too fast, so going to find a balance between the two.  Also, she said these would be withdrawal side effects - Jittery, sweaty, nauseated, stuff like that.

    Wish me luck, I'm going to start this tomorrow. 

    The apple cider vinegar, 2 T.'s a day in a glass of water or juice, seems to be helping with the hot flashes, probably cut them in 1/2 so far, and I've only being doing this for about 4 days this time, a couple of weeks ago, I did it for about a week, and also saw improvement, didn't drink it for a week and they got worse. Cutting most sugar and white flour out of my diet seems to be helping too. 

    I have to take pain meds for the AI side effects, plus have other residual pain issues from treatment, but don't want to take any more drugs than I have to. 

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 12
    edited January 2013

    Bump

  • Zeeba
    Zeeba Member Posts: 13
    edited January 2013

    I'm trying acupuncture next week--anyone have any success w/ it for the flashes?

  • swim_girl
    swim_girl Member Posts: 10
    edited January 2013

    I've been going to acupuncture, and I feel like it has been helpful. I've also made some dietary changes to mitigate hot flashes, so it's hard to know what helps, or if it's a combination. When I did not go to acupuncture for a few weeks over the holidays, the hot flashes picked back up, and then they dropped off again when I went back. My acupuncturist also works with me on nutrition and other lifestyle choices, which is something I don't get from my MO. She just tells me to try to get to a healthy weight and not to drink too much, so it's nice to have a bit more guidance along the way.

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 12
    edited January 2013

    Bump

  • LindaKR
    LindaKR Member Posts: 1,304
    edited January 2013

    I've noticed that mine are much better with dietary changes and more exercise!  And I'm getting off of the effexor, and the hot flashes are actually better - pain is worse, but I guess it's all a trade off!

  • Pegs
    Pegs Member Posts: 32
    edited January 2013

    I weaned off effexor in Nov.  I started in Sept. did it slowly and today i would say my hot flashes are not as bad as when I took effexor.  unless I am just getting used to being hot lol.

  • Deyrl
    Deyrl Member Posts: 5
    edited January 2013

    I'd like to hear more about Effexor and hot flashes. I am on Effexor for depression. After I see my pdoc next week I'm planning to fill my tamoxifen prescription. I am 41. I am wondering what to expect. I actually experienced hot flashes at night the first several weeks on Effexor, and had trouble staying asleep even when I didn't have hot flashes. After about four months on it, all the side effects went away. I wouldn't have stuck with it if it hadn't made such a positive impact on my mood and daily functioning. Maybe I'll get lucky with the hot flashes?

  • Rennasus
    Rennasus Member Posts: 642
    edited February 2013

    Please share any dietary changes you've made to lessen the hot flashes! "Trigger" lists are also helpful. My hot-flash triggers are alcohol and sugar. I've been on Tammi almost 2 years, and the flashes have reduced considerably. Just early mornings and evenings now. (Used to be all day.)

  • Linda54
    Linda54 Member Posts: 509
    edited February 2013

    Rennasus....  if I stay on a "clean" diet my flashes are less frequent and less severe.  I have done really well today staying "clean" and I have had an easy day with the flashes.  high sodium, sugar, processed foods, pre-packaged foods....that's what triggers mine

  • LindaKR
    LindaKR Member Posts: 1,304
    edited February 2013

    I started taking 2T of Braggs Apple cider vinegar in a large glass of cold water every morning for two weeks, I saw a decrease in my hot flashes almost immediately - then decided to quit the effexor, and forgot to take the vinegar, no hot flashes for several days, then had a couple but just had some vinegar, and they'd stop.  I thought coming off of the effexor would make them worse, because that's part of the reason that I started taking it - I'm also eating healthier, staying away from sugar, white flour, drinking less coffee, once in a while a glass of wine or beer (they will tend to trigger a HF pretty consistently).  Anyway, long story, not quite so long - I'm have less than 5 a week now, down from about 15 a day.  Not sure which or if all of these things helped - or if this is just a passing phase, but I'm happy.  Drinking the vinegar water actually makes feel better in more ways than the hot flashes, hard to explain.

    I'm 1 week out past my last effexor - it took 7 weeks to wean off - grrrrrr.  I noticed the head filled with fluff feeling started getting better immediately - the withdrawal sucked, actually it wasn't too bad until I got to the one day off one day on part, then I started getting headaches, nausea, panic attacks, and weird, weird, weird dreams, and insomnia and crying jags - them seemed worse the day I took the effexr than the day I didn't, so just decided to go two days without and see what happens.....now I'm up to 7 days out and the side effects are getting a little less each.  Hmmmmm maybe this wasn't your question about effexor - oops!

  • Zeeba
    Zeeba Member Posts: 13
    edited February 2013

    I just had my second session of acupuncture, and I think the severity of my hot flashes has decreased during the day--still have quite a few at night and first thing in the morning--I have the vinegar but haven't tried it yet--the potion recommended to me was 2 TBs w/ hot water, honey and cayenne pepper. If only I could get the insomnia under control, I'd be happy!! 

    I do get incredibly COLD now after the hot flash passes...if it's not one thing, it's another....

  • Rennasus
    Rennasus Member Posts: 642
    edited February 2013

    Insomnia is a major problem! When I was in the thick of the hot flashes (after I first started Tammi), I couldn't tell if I was waking up b/c I had a hot flash, or if I was waking up and my body reacted by having a hot flash. I've since come to believe it's the hot flash waking me up. Now I just expect 2-3 at night and if I'm lucky I'm able to shut off my mind and fall back to sleep. But too often it is too difficult to cut out the mental chatter!

    I also notice that I get incredibly COLD for 5-10 minutes *before* a flash hits. 

    Never tried the vinegar but may have to try it! Exercise also def. helps. I seldom get a hot flash when I am exercising.

  • ginger48
    ginger48 Member Posts: 1,437
    edited February 2013

    Exercise and accupuncture help. Sugar definitely makes it worse. I agree, Renn, I am usually very cold prior to the flash and they wake me up too. I have been using meditation to shut my mind off and go back to sleep. I just refuse to engage with my thoughts, breathe and relax parts of my body till I doze back off.

  • Zeeba
    Zeeba Member Posts: 13
    edited February 2013

    Had session 3, and the severity of my hot flashes has decreased quite a bit, and I had a pretty decent night's sleep last night--I could live with this!!!

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801
    edited February 2013

    I've had hot flashes when exercising. One time it literally made me nauseous. Generally though the exercise helps.



    Red wine will set me off immediately, so if I drink, I stick to hard stuff. I am a big fan of vodka tonics occasionally. Miss a glass of red wine though.



    The best gift my husband has given me in years was when he cam home with this tall skinny fan that has a remote and oscillates. I use it at night in addition to leaving the window open. It is wonderful!



    I am on the lowest dose of Effexor. Like others, it worked great for awhile, now, not so much. Onc wanted to up the dose, but I didnt want to deal with taking more. I am planning to wean off of it. I take mine at night. I ran out by mistake, so missed a night taking it. By the next night, which was Valentines, I was in a movie feeling kind of sick, jittery and having those brain zaps. Sheesh. That is the lowest dose.



    I weaned off the low dose of Pristiq as it didn't work and it was awful also. I a. Going to try the method listed.





  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited April 2013

    Hi folks haven't been here in quite awhile, but thought this may help ya'll :)

    Good Morning-friends, have been working on an issue with a member. Wanted to share with you all the note below b/c of it's importance. Hope you find it useful Sassy

    (members name deleted) Glad the link helped. If you get the AARP magazine this months issue (probably dated may 2013) , there is a story about the safest hospitals and what safety procedures that are in place that cause them to be safe. The article cites that 180,000 people die a year due to medical/surgical errors AND 400,000 drug errors are made a year. The articles states that these numbers are likely higher b/c these are the ones that are reported. I agree. I know you've seen where I've said on the threads "Sorry etc for too much info, just want too make you(BCO memebers) safer". Guess I should stop apologizing for writing stuff in this regard. These numbers are higher then the last set of numbers that I had known. The problem is either getting worse OR there is better reporting. I'll go with better reporting.

    It cited that one of the safety items was having an ICU Intensivist. It cited that only 35% of hospitals had Intensivist. I was dismayed at this percentage since residencies for Critical Care Medicine have been available since the 1980's. Truly thought by now that the "industry" would have been driven by demand for better care that this statistic would be 70 to 80%. ICU medicine is absolutely in need of a specially trained doc. Just as in all subspecialties of the American Medical Association(AMA), the knowledge and skills of this subspecialty are critical to survival when a patient is at this level of need.

    I'm going to post this on the threads, I'll take off identifiers. My hope is those seeing this will locate a copy of the AARP article. Read it throroughly. Then question there local hospitals on each item. Based on what they elicit re:safety of each facility, they can choose the safest hospital near them for care. It can mean the difference between life and death, and or avoidable complications. Spreading the word to others regarding this may save lives.

    Your description of where your friends daughter is now is typical. So, the care may have been fine or she recovered in spite of them. I'll go with the care b/c of your description of how she appears now. What was truly lacking here was the communication in lay terms to the family of was what was going on with the patient. All the lay person then can do observing is assume, as in this patients case, there appeared to be fractured care delivery and choas. What can the untrained person concluded observing this. As in all care, communication is the center of it all. Very often even the care givers question what the recovery will be. AND then the patient pulls through. Continuing with evaluating the records will lend a lot to the understanding of this event.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited April 2013

    Hi all could someone please remind me where to get one of the cool pillows Thanks sheila

  • Zeeba
    Zeeba Member Posts: 13
    edited April 2013

    I got mine at Costco...best purchase EVER....

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited May 2013

    thanks, Zeeba:) sassy