Hot Flash Forum!
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Hey Girls,
I started acupuncture about 3 weeks ago for the hot flashes. I no longer wake up during the night, and when I do get a flash it's much less intense than they used to be. I'm convinced this is working! I've been going 2x's a week for 6 sessions so far. I'm so pleased with the results. Give it a try. It beat taking lot's of different medicines. Good luck to you all.
Margie
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Sas, I actually just started an SNRI for my neuropathy, and had wondered if it would also help the hot flashes, but with Dr. Freedman's theory that it is due to HIGH norepinephrine levels, and the SNRI actually INCREASES norepi, something just doesn't sound right. I hope I am confused about the mechanism of action here, because I would really like it if one medicine could help 2 problems! (well, I can dare to dream, can't I?)
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n3pb----i didn't mention I'm only on Savella 25 mg bid that is less than the lowest recommended dose of 50 mg bid. The dose I guess can go as high as 200mg. My dose is really small, but it works for me. I would like to try a higher dose, but messing with brain chemistry to much worries me. The concept behind the ssnri' and ssri's isn't that we aren't producing enough. They allow the neurotransmitter that is released from the neuron to remain in the synaptic space longer, rather than being taken back into neuron. Therefore, the response of the nerve transmission is longer. Hence ----re-uptake inhibitor. It's not that we are producing more, it's staying in the space longer to do it's magic. Now once you get into the higher dose levels haven't got a clue, it'd be a whole different study. BTW Savella is not a new drug. It's been used in Europe for 10 years for fibromyalgia with a good track record. Our FDA in it's infinite wisdom gave it's producers proprietary rights as IF it were a new drug---------_$$$$$$$$$$------If it were a brand new drug I wouldn't take it. Learned my lesson with Celebrex. The other reason I won't move to a higher dose level is I like a few drinks a week. Alcohol and these drugs are contraindicated together------meaning a big no no. So, I trade off some pain control. How would Edith Ann say it "AND thats the truth pwttt". Pain though is a good motivator-----if i move to a level of life choice, meaning something must change or else, I'll make a change.
What ever the AI's do to mess up the works. The Savella saved me. For some reason Arimidex and Aromasin sledgehammer starts to comedown about the 5 month. Then whammo. Now , Femara on the other hand hit within days. No explanation. I cried the whole day of my first dose of Aromasin, knowing what I had experienced with the other two. The swimming has greatly improved things too. I didn't want to increase the savella , but had to do something to stop the increase in pain do to lack of muscle use.
If it isn't one thing it's another. When I get my tush to the healthfood store the next addition is melatonin and I need to study menopret.
Ren---figures, I just hear what you are saying about Coreg after getting a new 6 month supply. Definitely will consider a trial the next order. Thanks
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sas - Thanks for the info. Very interesting. I think there may be another trigger as well though because I have hot flashes regularly regardless or what I am doing. Like clockwork. In other words I can be cold and have them and I can be hot and have them. Doesn't matter. Going to try the paced breathing!0
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What an interesting topic . Began hot flashes at age 40 when a hysterectomy at 37 put me into menoppause . HRT , my saviour for 18 years then BC ,IDC , so that was out , and immediately the hot flushes began . Started on Letrozole ( generic name for Femara ) and they went out of control , like some of you , every hour , on the hour day and night , not justa flush , a full blown drenching sweat! I took everything I could get my hands on . Black coash . evening primrose , sage , vit D , absolutely everything that anybody told me their auntie Ethel´s daugters cat took and found good , I took , and I toook for 9 moonths before ditching them all as of no use to me . Phoned up the Breast cancer nurses at one of the charity´s in the UK and was advised to ty Gabapentina . This i have been on for nearly a year . It has helped enormously , I now take 1200 a day . It´s halved the hot flushes , so I get them every two hours instread of every one .( I´m so very thankful for small mercies !) Like others , I get that "feeling " before one comes , also get the urge to wee , which can be such a nuisance if you cannot get to a toilet .The best thing anyone can do for recovering breast cancer patients is to be able , by some means , to eliminate the despair and dread of hot flushes . Would I take HRT , knowing what I know now ? Yes , If , after taking letrozole for the next few years the hot flushes do not go away when I finish , would I consider HRT again ? Definately yes . Quality of life is so important .
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OMAZ do not want to assume what you are saying"I think there may be another trigger as well" What are you referring to?
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JWS Thanks for adding to the discussion. Again hearing some commonalities---"something -Aura", Gabapentin which is neuronton which multiple people have mentioned, several have mentioned the urge to pee. Hopefully we get to the questionnaire that lines up all our symptoms lineally and treatments orthodox and alternative/ complimentary.
n3pb and Omaz and all keep thinking of questions for the survey---------Jot them down and then when we get it figured out how we want to do this in this place, we can put it together. I see lots of positives coming out of what is being said here.
n3pb since you have experience in the real world guidelines of setting up a study, if it wouldn't be too much trouble to post them, perhaps if we follow them----we may have something that goes further than BCO.
To all-----has anyone done an extensive literature research in orthodox, alternative, complimentary and kept the resources literature?
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SAS-I get somewhat confused by all the abbreviations and references to drugs. What is a SNRI? Also when you name a drug can you put in parentheses what it is for? I am trying to follow but since there are so many ladies taking different regimens I have to back many posts to remember what these drugs or supplements are treating. Thanks! I feel like I am learning alot.
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Hi AGD, welcome. There are multiple neurotransmitters in the brain. Serotonin, norepnephrine, dopamine, these are the major players. Will do a quick search after I post this and add if there are more that I either didn't know about or have forgotten. I will also try to find a complete list of drugs in each group versus just naming a few and add them.
SSRI-selective serotonin reuptake inhibitor
citalopram (Celexa, Cipramil, Emocal, Sepram, Seropram)
escitalopram oxalate (Lexapro, Cipralex, Esertia)
fluoxetine (Prozac, Fontex, Seromex, Seronil, Sarafem, Fluctin (EUR))
fluvoxamine maleate (Luvox, Faverin)
paroxetine (Paxil, Seroxat, Aropax, Deroxat, Paroxat)
sertraline (Zoloft, Lustral, Serlain)
dapoxetine (no known trade nameSSNRI or SNRI--selective serotonin norepinephrine reuptake inhibitor
Venlafaxine (Effexor XR, Effexor)
Desvenlafaxine (Pristiq)
Duloxetine(Cymbalta)milnacipran(Savella)
TCA-----tricyclic antidepressants---older class of drugs, not much used anymore b/c of to widespread side effects And the advent of first the SSRI's then the SNRI's
DRI's --dopaminergic reuptake inhibitors-------wikepedia lists a huge amount of drugs in this class. The most well known one for general population use is Wellbutrin.
bupropion(Wellbutrin, Zyban)----I would have sworn on a bible it was a SSRI
I said I'd do a complete list. So, here it is. I'm so glad my mind does not need to learn this stuff again. I started learning them in the days of MAOI's --the 70's. Poor young ones of today
.MAOIS--monamineoxidase inhibitors-------way old class of drugs, lots of bad side effects essentialy, use stopped with advent of TCA's. TCA's essentialy stopped withadvent of SSRI's (prozac was the first). There has been a new Maoi approved within the last year , but forget it's name. All I remember thinking about the drug was OH MY why would the FDA allow it , they were that much trouble.
Depending on my degree of laziness, I may add more--sounds stupid, but sometimes I am lazy. This will be much edited, but I will fill in the gaps versus saying where it's edited.
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sas - From my best understanding of the article it seemed to me like he was saying that small changes in temperature could cause the hot flash or chills. Did I get that right? Well for me I get them just regularly - for example I can go out for a walk in 100 degree weather and get very hot but if it isn't 'time' for the hot flash I don't get one. so my temp is definitely elevated but doesn't trigger a flash. LIkewise I can be sitting in my office with super cool air and bam, be drenched, if it's 'time'.
On page 3 here we talked here about the 'Low levels of the hormone estrogen cause the brain to release a hormone--GNRH in surges. The sudden releases cause the hot flash. The periodic release of GNRH is generally worse at night.' Maybe there are different triggers. That's what I was thinking.
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OMAZ----thanks I knew I had no clue what you were thinking. Yes, I agree with you about triggers. But I don't think the article is disagreeing with you at all. Freedman has studied it for 25 years in the clinical setting with lots of gadgets and freely admits, they still have no clear identification/clue of what triggers them. They think norepinephrine has an affect, he did not say it was definitive. His example of clonidine, I took it to mean they have some results suggesting it helps. But it's just like what we are finding out amongst us, that one drug works for me and not for you, and same with dosages. It's all over the map.
The timing thing where you and others here are saying that they have them at the same time everyday. That I haven't seen yet in any reading, but i'm only just getting into the research on it. If you recall, I said there were two things in reading most all posts were the "something-Aura" and the timing that I found very intriguing. Translation ---Just as above -------no clue and hadn't seen it in print. This is part and parcel of why I think our group discussion has importance. Have these two items been missed in all the research up till now, or is it particular or more pronounced in the Tamox /AI group. Freedman's explanation of thermoneutral explains some, but how do people like you describe yourself, fit into that explanation. If anyone has an explanation please post it. AND if you don't fit into that thermo explanation why not?
Haven't studied GNRH yet. GNRH may have not even been identified yet. The Harvard newsletter is from 2005. With your background, I know you know, that is already old science to a point. For those, that science is not something that trips your trigger(old 60's saying meaning interest), by the time a breakthrough scientific finding makes it into print the concept is several years old already. So, now we try to find and talk about things like GNRH.
I love this thread b/c everyone is bringing up info that they have found. We are learning. For me, that's huge. Not to cry poor me, but along with BC, I had a closed brain injury in a fall which has affected it in strange ways--strange enough I lost my livelihood that I adored, and they found a brain tumor which I was told about the same day over the phone by a nurse one hour before breast biopsy that we knew was going to be positive. Then my DH of 38 years was dx'd 3 months after me with Lymphoma and Leukemia-he passed in Aug 2010. From Sept 08 till now has sucked. This group b/c of willingness to discuss from orthodox to alternative and seeking information without any hint that I can read of someone demanding that only their way is right, is Nirvana to me.
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Faithroad i had a all my stuff removed too dock said it would be best gave me a 50 50 been 8 months the hot flashies are affel they make me sick sometimes and my face gets bright red my body tingels from hed to toe everyone knows when im haveing one by my red face i take tamoxifin too it seams to make them worse . then i get cold chills too hot then cold i guess case i get so hot and wet with sweet then i get cold . i have not found much that helps cant wate for winter so i can just walk out side in the cold at work i go to the cooler lol . a fan helpsi keep one going and jump infrount of it when i fel the tingling .
just thank God im still here with my family and im not sick and my heair is back!
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man sas, that was a lot of stuff to happen in a short time!! (((Hugs!)))
Just to say nothing much changed for me hot-flash wise when I started the tamoxifen. And, when I go to gyn appt next month I am going to ask for clonidine. I took it for blood pressure a few years ago and am familiar with it. Maybe that would help. I have been on the menopret for about 5 days now but haven't noticed anything. I am giving it two weeks.
Did we find a brand and amount for the acai drink (was it a drink?)?
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To ALL-----sent the post to mods to ask about doing a study
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Omaz Thanks for the hug appreciated and returned
Acai I haven't a clue about, It seems to me there was a bulletin on the main BCO about Acai, but that could be a faulty memory. But my date with my DS got canceled so, I will do a search on clonidine and see whats out there, if the creek doesn't rise and my legs don't start to swell b/c of sitting so long.
. I as well took it at one point. There is another drug that is centrally acting like clonidine called apesoline. Very old drug rarely used orally anymore, but is still available. I have a friend that swears her fibro went away when she was put on the drug. Wouldn't that be a nice two for one. Same with clonidine if it had any effect on fibro symptoms as well as hotflashes. Must be responsible and go for my swim, body is starting to scream at me LOL
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SAS. I too am sorry to hear that you have been through so much in such a short period of time. So very very sorry about your DH.
I find that my flashes come on in the way that Omaz describes. No rhyme or reason, and when it makes no sense (ie: at work and it's freezing). I started Clonidine almost 2 weeks ago. So far, I haven't noticed much difference, I am hoping that it takes longer than 2 weeks to kick in. However, it seems to me that it's mechanism of action should make it work fairly quickly. Does anyone know if that is a correct assumption?0 -
wenweb - for blood pressure clonidine works pretty quickly but I don't know about for hot flashes!0
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Decided to swim and take night off- from serious thinking
Wenweb---Thanks for your kind thoughts. The wonderful thing about the short term memory problems created by the injury and all the meds and stress, is it's helping to blur allot. Actually hoping it continues. As I once said some time ago " seriously seeking normal"
-I agree with Omaz. When I took it- clonidine-- I had to stop b/c I developed problems with my hands. Though call as to whether it was neuropathy or a Raynauds like response, but it happened in < 2 weeks. Enough years ago forget exact length of time. Mine was a rare s.e . Now that I write that, seems to me after I researched my response to the drug, it was recommened to not be taken by anyone with raynauds. It would seem vasodilation would be the expected mechanism, can't remember or surmise why. Well maybe itll pop up in the new review of the drug.
Try Epocrates.com --it is more sophisticated in it's responses than most others. Keep us up to date on your response to the med etc.
Have a good SUN all
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In searching for one thing, we very often find something else. There is a site, 34 symptoms of menopause. www.34-menopause-symptoms.com/treatment.htm. Could not get it to hyperlink.First and foremost, this is a very well written advertisement, presenting itself as primarily educational. Each section ends with a link to Macafem which is a non FDA approved supplement. Also, it is written for women going through regular menopause. Minimal to no reference is made to breast cancer.
All that being said it is worth a read b/c, it covers many things,.ie..34 symptoms of menopause that we may be affected by. The presentation of each symptom follows the same format. That format includes the following 1.Definition of symptom and why symptom is occurring. 2 Lifestyle changes that may improve the symptom. 3 alternative medicines. The alternative medicines are broken down to two sections
First section, is phytoestrogenic which means the taking in of plant based food that has estrogenic properties. In each case Black Cohosh is mentioned. Secondly, nonestrogenic herbs this is described as herbs that promote the pituitary in particular to naturally produces hormones to increase estrogen and progesterone. It then hyperlinks to Macafem. Macfem then describes how it supports the pituitary as above and all the other endocrine glands. Other areas, for example, insomnia mention diphenhydramine giving it a name Somilex. WE know it as Benadryl.
My editorial: the teaching sections are excellent. A major thing for me, is I learned why I'm developing so many allergies. No where else have I seen this mentioned. I read all the topics of particular interest to me and learned something on each. It's 3 am so you can understand why , I didn't read them all, but perhap1/3 of symptoms presented.
How does it hurt us as BC patients. We need to avoid things that increase estrogen whether plant based or those that encourage the pituitary and other endocrine glands from producing them. WE are trying to reduce circulating estrogen rather than enhancing them. Tamox and AI's whole point is to block estrogen
GNRH was part of my original search, I diverged and that is how I found the above..
GNRH while not mentioned in this article is a hormone that when it falls low the hypothalamus signals the pituitary to produce hormones that stimulate other areas particularly the ovaries to produce eggs. GNRH receptors have been found in breast cancers. GNRH info is hard to come by, wikipedia has some information about it. GNRH is used in infertility work to promote hormone production to stimulate the ovaries to work(Medscape). Not something we are interested in. But how it has become to be mentioned as a source for relief for us with hot flashes, I don't know? So, I suggest we keep searching. It is true hot flashes will occur when it is low and by increasing it , the thought was to reduce hot flashes perhaps. But we don't want to encourage the pituitary to produce hormones, that will increase, Estrogen production. Anyone finding articles countering this, please bring them forward, so, we can study them. Thanks sas
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WenWeb: I agree with Omaz, Clonidine is a BP med and thus works quickly. It's also a twice a day drug, yes? If you've been on it 2 weeks already without a reduction in hot flashes, it may not provide that kind of relief for you.
I want to reiterate that when I switched to a 24-hour release BP med, THAT is when I also found relief from my hot flashes. The constant, even flow of meds in my bloodstream is what disables my flashes. YAY!! I still feel slight chills a couple times a day, still sometimes feel slight a flush on the back of my neck, but then it STOPS. I never get hot enough to even have to take off my shirt! I still put up my hair on occasion. But my life is vastly, VASTLY improved because of my long-acting BP med.
SAS Girl you have been through so much! Thank you for taking the time to do so much research. A great many women will benefit from your posts here!
Regarding Acai Berry... someone posted about it on this thread. Maybe they will chime in again and let us know how it is (or isn't) working!
Meanwhile, how are our menopret ladies doing?
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Hot flashes stink. I'm taking Femara for another 3 years (heaven help me) and it is making me crazy especially these terrible hot flashes and night sweats. My onc assures me that they will dissipate over time but it's just not happening. Plus, I live in TX where it is hot 11 months out of the year. Thanks for starting this forum. I might also ask - is anyone losing their hearing? My onc said it is a rare but documented side effect of aromatase inhibitors. I'm only 42. Too young for a hearing aid.
Diane at www.pink-pockets.com
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All this is so interesting! My Mom never had hot flashes nor my older sister, however my other sister and I both have them. I also have MS so my tolerance for heat is very low. One of the reasons they think I have had MS since I was a young teenager is my heat intolerance. But then I always had difficulity with any temperature change. I'd be either really freezing cold when others were cool or burning up when others where slightly warm. So I learned early on never to trust that what I felt the temp was probably wasn't what others felt.
I went through menopause naturally young at 37 then was put on HRT as my symptoms with young children and MS were difficult to actually function. Now after BC back into menopaus symptoms and hot flashes. Mine are worse at night. But one thing I've had connected with menopause which most Dr.'s look like me like I'm nuts is that if I turn on my right side then I'm always really hot but if I turn over then I'm cold. I can do this at any time. Wondering if anyone else has something so strange. But when I have hot flashes of course there is no way to get cold. I just wish it didn't wake me up! But that is facinating about the very small non-existant variance in temp changes..... Thanks.
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as- Oh I'm so sorry to hear all you have been through, what a strong brave woman you are, even though you'd probably rather not be. I'm glad this research is helping you as it certainly will help and benefit many of us.
One thing I've been curious about is why the flashed for most people start mid-section and go up? Why is that? I have that but sometimes it also encompasses my entire body not sure if that happen to others a well. But isn't it the thyroid that controls a lot of temperature? At least that is what one Doc told me. I am hypo-thyroid so wondering how much that may affect things.
Also very interesting about the GNRH as because I was going through pre-menopause while trying to get pregnant I did take all those scary drugs and lots of hormones and have always thought all that had to have an impact on getting BC.
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Stanzie, my flashes were hottest from the knees up. My entire thighs and upper legs would get incredibly hot, as did my core, my arms, my neck and head. Thank God that has abated!
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I have finished 7 days of menopret and so far, so sad to say, no changes in the hot flash arena.
For the time release blood pressure med - is it clonidine patch?
What about magnesium, anyone have luck with that?
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My time-release BP med is Coreg CR (20 mg).
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Rennasus, I have to say that I agree with you. I think the Clonidine should have had a more immediate effect. Since it's not giving me any bad SE's, I am willing (and hoping) that it might have some benefit at some point...wishfull thinking at it's best!!0
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Omaz - that stinks ! I am lovin it. Just have a few warm waves here and there. It really was week two that it seemed to kick in...
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I'll keep at it Shannon - still hopeful!!0
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Omaz: What does magnesium do? I take it regularly.
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