Hot Flash Forum!
Comments
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Sorry was only using D as an example for watching effects of new drugs and higher doses than usual. Didn't mean to bring that discussion here about flashing.
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Thanks Sas!
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Has anyone tried Maca for their hot flashes?
It has helped me and also a friend.
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I'm just now seeing this forum. I am a 7-year survivor & just found out the breast cancer came back in situ in the same breast so will have a mastectomy in 2 weeks. I had horrible hot flashes while I was taking tamoxifen which sent me into menopause. My oncologist prescribed an antidepressent which I didn't like & then Neurotin. I took it at night & it really helped. I agree with others - either having to pee or having a hot flash woke me up 3-4 times a night. At work, I seemed to always have the flashes when a certain boss walked into my office! I too keep a fan at my feet at work & wear layers. It's so good to know none of us are alone in our battle of the dreadful b-c!
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I have had terrible hot flashes since my dx in 2003, as many as 4 an hour. I had to stop estrogen-replacement suddenly, of course. Then used tamoxifen and aromatase inhibitors for 5 years. Still the flashes came.
Exercise helped me, as did celexa, an SSRI. Recently I have started using 250 mg of magnesium twice a day--saw it inline somewhere. It is VERY helpful for the flashes and reduces the sweating too.
I also use melatonin for sleep and find it effective.
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I too sleep under several fans, including a bedfan. Check it out at bedfan.com. It's amazing.
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I read most of the post on how women are dealing with hot flash and saw that many of you are resorting to Xantax and similar drugs to get sleep. I have hot flashes since 2007 when surgery for BC carried me into early menopause. I purpose in my mind that I wil never take any meds for my hot flashes (I'm on Tamoxifen) and so far I have not. I exercise 3-4 times per week, drink lots of cold water and try to away from stress- which is a major trigger. Hvae to go will continue tomorrow.
keela
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I started on tamoxifen Jan/09. It is my best friend and worst enemy. My hot flashes were quite debilitating initially. I would have them every day and frequent night sweats. I have less flashes now and they don't last as long, however they are not nice. I take effexor and clonidine as well. I exercise a lot and drink lots of water. I think everybody is different. I also notice an increase in flashes if I drink red wine or take narcotics for pain. My empathy is with you. CathyA
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Note sure where this will appear on the forum but for those who asked about the timing of the hot flashes-I have them at the same time every night! They wake me up just before they happen. I also have the slightly nauseated feeling and a wave of tiredness. Then comes the flash. Glad to hear it happens to others.
Taking Effexor 75 mg and it seems to help. If I stop they are worse and I think it does calm me down. (Not that I felt stressed) Was wondering if anyone takes a bigger dose? I am a person who always needs a strong dose of pain meds, etc. don't want my Onc to think I am a druggie. She was the one who said it was worth a try. She said in her mind sleep interference was the BEST reason to try it. She has a PHD in pharmacology so I guess she won't lead me wrong.
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Hello...I was dx 4 years ago, had lumpectomy, A/C T, and radiation. A few months later I started Tamoxifen, so I've been on it for 3 years.Chemo put me in instant meno..The first summer on Tamox I became very heat intolerant. I started getting low-grade fevers and flu-y feelings from the heat.--almost every day until weather cooled. A lot of times the fevers start in the late afternoon or evening. This is my 3rd summer of the fevers. I've been tested for Lyme, etc--no medical explanation. Has anyone else experienced low-grade fevers and malaise due to the heat/sun while on Tamoxifen? It seems like being in the sunlight, especially shining through my car window, makes me feel sick too --even if it's not that hot out. I can actually feel the fever coming on. Thank you for any feedback about this...
IDC, 3.5 cm, lymphatic invasion, ErPr+, Her-,chemo, rad, tamoxifen .
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Hi everyone! Just came across this forum and there are some interesting ideas presented here. I've been having hot flashes since 1998; at first they were mild but quickly became monsters. By 2003 they were almost non-stop-very difficult to work. So after much research, in 2004 I went on bio-identical hormones. Then, in 2009 was diagnosed with Stage 1 breast cancer. Off hormones, and the chemo made them come back.
Following the end of treatment in August of 2010, they were somewhat milder. Until a month ago when I had to undergo a total hysterectomy due to huge fibroids. OMG, they are back with a vengeance now and the night sweats just drenching! I might try some of the remedies mentioned here. Already on Arimidex since I'm 57 and post menopausal and been taking Effexor for years. Needless to say, I'm pretty tired of all of this after 13 years now!0 -
Look up "Cool Pad" too. You lie down on it and it keeps you cool all night. This has been a lifesaver for me.
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AGeorgiaDeb, You asked if anyone takes a bigger dose of Effexor....well I do. I take 150 mg which slightly reduced my hot flashes but didn't help my night sweats. Finally, taking that along with 1200 mg of Neurontin has kept me night-sweat free. Yippee! My hot flashes have been reduced to "warming" moments throughout the day. My Onc was also very concerned about with interrupted sleep, and like you, I don't want to take meds unless I have no other choice (don't want to be thought of as a "druggie", as you said
). Each one of us is so unique, and we do what we have to do to help us get thru this time. Blessings and wishes for restful sleep! Cathy0 -
To all, Druggie is usually attached to those people on lots of narcotics or benzo's. Not that it's fair or correct. With that description, that's where I would fall b/c of all the s.e.'s. caused by Aromasin, but I have made the choice to take the Aromasin. The other drugs I take as minimaly as possible. It makes the difference between moving and not moving. There's other stuff like daily exercise that I do to make sure I don't further deteriorate. The irony is that's what's causing the pain. So, for me it was a trade off. Someone will come back and say, I could be doing it a different way. There are thousands of details and thoughts left unwritten.
I may only take Valium once or twice a month b/c there is a particular set of symptoms that it controls, but it's on my med list. But some medical professional only sees the list and says whatever--- you are taking allot of drugs. Their not interested in the how and when, all they see is what. I'm beyond caring what they think. Cluck'em
There are so many good suggestions here. Shared without judgement. The women here are so supportive of each others accomplishments in trying to control the s.e of hotflashes inparticular, but other good thoughts come through too.
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Changing oars, has anyone studied the sequence of a hotflash. I see many common descriptions. The"something" that happens before a flash. I find that intriguing. It seems so common to us all. AND the timing, that many experience them at the same time everyday, also intriguing. If anyone else has picked up on commonalities, please, point it out.
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I definitely feel something just before the flash. After beginning to recover from the chemo and radiation tiredness, I would be out doing something "normal" and i would have this bad feeling. in the beginning i thought I had simply done too much. Then i would have the hot flash! And then i would feel ' normal" again. When the hot flashes first started, they were chemo induced. big time sweats!! Had to change clothes. now they wake me up before they start and then i am awake until I feel cold. They are much worse in the 90 plus temps of summer. Takes much longer to get cool. i need to try the ice packs.
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Another thing I struggle with is whether I would feel this way anyway due to my age whether i was taking Tamoxifen or not? Am i being a wimp or do all women go thru this? I am breaking out in a sweat right now!!
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I was having terrible hot flashes--about 30 a day and waking me up all night long. After about a year, I tried Effexor, which cut them in half for several months. They started ratcheting up again and the doctor said that I could double the dose, but I was reluctant. With the summer's heat, the frequency was too much and I doubled the dose about two weeks ago and have noticed significant improvement. I don't see any other effect from the Effexor, although I might be less irritable that usual (you'd have to ask my family about that!).
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Well bummer long post in the netherworld
The analogy I can make if that Funny feeling before the flash is analogous to the AURAs that seizure victims have. Their's can be visual, smell, hearing. a pervasive feeling.
So until we find if science has given it a name for us --------we will call it an aura-------
Then the other common thing in the reading is people have learned to do so things very rapidly to counter the severity. We can put them together in a group,
The drugs that are consistent throughout EFFexor, Savells, Celaxa, These are SSRI's and SSNRI's to tired to retype. .When someone starts questioning you about depression----you can say it's being used off label for hotflashes--------read below
neurontin/gabepentin are anticonvulsants--------if questioned about seizures say the same thing that it is being used off label for hotflashes.
The reason is, I have seen many nurses put neurontion -epilepsy--------well that gets a wrong dx again put in your medical record. so ask to see how they have entered it. Not done right, make it be fixed. Could have preexisting implications., that could cause be trouble later. I have had this done twice , that took months to get corrected.
Maybe the mods will let us make up a questionairer and we can make a separate section. Science -- yes!
Post here questions you would suggest or just PM them to me . I will contact the mods and see if they will let us do it. I won't get to it until next week. And then it will take 1-2 weeks to put together.
I'll see if there are any evidence based articles or if someone has them already if they would share.--------------------could be eyeopening. Any body up for it?
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sas, great idea! I don't know if you are in any kind of academic setting, but usually doing survey "research" requires an IRB (Institutional Review Board) for protecting human subjects (their personal data in this case). However, in this informal setting, with lots of discussions and the purpose being to share information with each other, that would be different and not need any "official" approval. I would love to see a real study on this done because I also have a definite "something" that is a warning prior to hot flash, but can't even put words to describe it, just know that in the next few seconds or minute I will be sweating. I also note that I am cold most of the time, and when I finally warm up, I tend to "overshoot" and that is when some of my hot flashes occur. I keep thinking I should check my body temp, but just haven't yet like some of you have.
I have also had major errors in my medical record, so have become a bit of a pain in the a** about them because it takes FOREVER to get them corrected, with the electronic health records they use now (and one MAJOR error is still not resolved to my satisfaction over 15 months ago).
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sas - Let me know if I can help with data analysis. I do that for my job. If you do a questionnaire I can help with that to as I work with a lot of questionnaire data.0
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I went to my onc appointment yesterday and get this: she NEVER heard of using neurotin for hot flashes...mind you, I had a GP subscribe it to me 8 years ago when I went thru mentalpause the first time - now I'm having night sweats from being on Arimidex for 1 1/2 years...
The only thing she would subscribe is effexor...75 mg and she said that I should cut it in half... At the end of the appointment she told me I should call her staff if I get any of the "bad" side effects they will show up right away and it will take a "few weeks" before the hot flashes will subside...wtf? I went home and looked up effexor side effects and there are many... Anyone on this thread had adverse se's from effexor? And really? Never heard of using neuronton?
This is the same onc that couldn't believe that going gluten free could be a remedy to stop the joint pain caused by this AI as well...
I'm also trying someone elses post about taking acai berry once a day...she said it would take about 2 weeks before it would kick in but I swear I had only one night sweat last night (that woke me up). Been taking that for about a week now...
Also, would be glad to participate in a survey...0 -
found some info from the Harvard news letter.It basically confirms what we already know. But two things are of interest. One, no "Aura" is mentioned. Two, it describes how our temperature tolerance is abnormal ,but it is unknown why. It is copyright protected , I have made initial contacts re: the diagram Hopefully DR Freedman will allow us to use it, otherwise I will delete it.. . AS I said it confirms much of what we know.Some here have a science background others don't. In science it is important to understand collectively what we know so, that we have a common language and understanding. Then collectively, we then move to what we don't know by gathering data and evaluating the data.
OMAZ and ny3pb Thanks for the offer of assistance. I recently figured out how to send the same info on a PM to two or more people. You copy info in PM just before sending, then paste into the 2nd PM. I'm going to post this now, so, it doesn't go to the netherworld.
Ritaz--since our little study is ours and as ny3pb points out it's not going to follow rules that normally would be followed in an approved study. At the end we should have a picture of how they occur and what tx's we are using. It doesn't surprise me your doc didn't know about Neuronton. It's an off use label of the drug, as likely the ssri /ssnri's are. Many docs avoid using a drug off label b/c it hasn't been approved for such (in our case hotflashes)by the FDA. If something goes wrong when a drug is being used off label, then it can be a problem for the doc. Particularly, if it is serious side effect. They could be investigated by their medical boards, censure, license problems , malpractice claims. So, your doc is being protective of you and herself. That is a good thing.
Remember this phrase-----others may have used it, but I had never seen it in print when I thought I made it up in 2001. This was after Celebrex caused diverticulitis in me, and I ended up with a colon resection. Four specialist approved me using this drug. Only later did I find out it had a Black box warning and I should have never been on the drug.
All DRUGS HAVE CONSEQUENCES- we must be pro-active and self-protective
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Harvard Health Publications newsletter August 2005 Perimenopause: Rocky road to menopause Harvard publications said the article could be paraphrased , I will paraphrase each paragraph as identified with quotation marks and a hyperlink to the full article is below.
http://www.health.harvard.edu/newsweek/Perimenopause_Rocky_road_to_menopause.htm
" Hot flashes - sometimes called hot flushes and given the scientific name of vasomotor symptoms - are the most commonly reported symptom of perimenopause. They're also a regular feature of sudden menopause due to surgery or treatment with certain medications, such as chemotherapy drugs. "
"Hot flashes tend to come on rapidly and can last from one to five minutes. They range in severity from a fleeting sense of warmth to a feeling of being consumed by fire "from the inside out." A major hot flash can induce facial and upper-body flushing, sweating, chills, and sometimes confusion."
"Most American women have hot flashes around the time of menopause, but studies of other cultures suggest that far fewer Japanese, Korean, and Southeast Asian women report having hot flashes. In Mexico's Yucatan peninsula, women appear not to have any at all."
"Although the physiology of hot flashes has been studied for more than 30 years, no one is certain why or how they occur."
Permission granted to use the following section by Dr Robert R. Freedman/Vicki Terry on July 22nd 2011 by phone with sas-schatzi-------- Each word of his information was too important for our understanding of what is happening to us, to leave out. He was very kind to let us use it. Thank you Dr Freedman.
One line of inquiry has focused on why some women have hot flashes and others don't. An intriguing explanation has emerged, thanks largely to research led by Wayne State University School of Medicine scientist Robert R. Freedman, who has studied hot flashes for 25 years. He and his colleagues have measured skin temperature, blood flow, and skin conductance (an electrical measure of sweating) in menopausal women before, during, and after hot flashes. They've asked subjects to wear monitors to collect hot flash data, swallow radiotelemetry pills to measure core body temperatures, and spend nights in a sleep laboratory to have their hot flashes tracked.
Freedman has found that women who have hot flashes have a lower tolerance for small increases in the body's core (innermost) temperature than women who don't have hot flashes. The body tries to maintain its core temperature within a comfortable "thermoneutral zone." When our core temperature rises above the zone's upper threshold, we sweat; when it drops below the lower threshold, we shiver. Women who don't have hot flashes have a thermoneutral zone of several tenths of a degree centigrade. But in women with hot flashes, this thermoneutral zone is so narrow, it's "virtually nonexistent," says Freedman (see illustration). As a result, small variations in core body temperature - by as little as one-tenth of a degree centigrade - that don't trouble some women trigger hot flashes (and chills) in others.
Source: Adapted from Freedman, RR. Seminars in Reproductive Medicine 2005; 23 (2): 117-125.
What causes the thermoneutral zone to narrow? One idea is that elevated levels of the brain chemical norepinephrine are involved. Norepinephrine has been shown to reduce the thermoneutral zone in animals. Conversely, the drug clonidine, which lowers norepinephrine, widens the zone in women with hot flashes. So do estrogen and certain antidepressants, though scientists still don't understand all the mechanisms.
Because hot flashes are triggered by elevations in core body temperature, the first-line strategy for avoiding them is keeping cool: Drink cold beverages and avoid hot ones, use fans and air conditioners, and dress in layers. Another nondrug technique is paced respiration. In controlled studies, Dr. Freedman has shown that paced respiration can reduce hot flash frequency by about 50%. Women in these studies were trained to take slow, deep, full breaths - expanding and contracting the abdomen gently while inhaling and exhaling - at a rate of about six to eight breaths per minute. One of the best ways to learn paced respiration is by taking a yoga class, then practicing this technique twice a day for 15 minutes. You can also use paced respiration whenever you feel a hot flash coming on."
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I don't know if anyone else is psyched, but I am. Freedman knows his stuff and is very well published. They were very kind. In return I shared with them our observation about the"something-Aura' That we all feel right before a flash occurs. MS Terry who types all his papers. Says she has never heard him discuss this and hasn't seen it in any of his writings. So, we may have identified something. Wouldn't that be cool
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SAS thanks for your efforts in getting the above posted! It is uber interesting!!
I am happy to report my hot flashes are reduced by 90%!! And in a weird way I have Tamox to thank for all of it. Allow me to recap:
I started Tamox in late March, had horrible hot flashes, all day and all night. Then found out two of the other meds I was taking interacted with Tammy. I got off the one with the biggest interaction first (Wellbutrin, which I took for anxiety). I tapered off Wellbutrin, then replaced it with an SSRI, Effexor 75 mg.
I was hopeful about Effexor because it also can reduce hot flashes but worried because SSRIs don't work for me (my seratonin is fine). But I tried Effexor anyway; 75 mg. once a day (eventually supposed to work up to 2x daily). I had terrible insomnia, and felt jittery and it did nothing for my anxiety and in fact, for me, made it worse. My hot flashes persisted. It's possible taking Effexor twice a day would have eventually helped me, but I took it for a month and decided that was enough. I have never had success with regard to my anxiety on an SSRI. So I taped off Effexor completely and now just use Xanax for anxiety when I need it. (Exercise also helps!)
Next up, my BP med. I had been taking Diltiazem HR CD 120 mg (a calcium channel blocker) for the past 5 years, but it interferes with Tammy too (tho not as severely as Wellbutrin). My primary doc switched me to a beta blocker, Carvedilol 6.25 mg, twice daily. It also had the potential to help reduce my flashes. But it did not.
My DH (a pharmacist) suggested the long-acting version. So at my next doctor's visit, my doc switched me over to Coreg CR (20mg) and I started it about 3 weeks ago. My body likes the continuous release of the drug . But I noticed it also GREATLY reduces my hot flashes! OMG the difference is remarkable. Beta blockers are serious drugs (I have hypertension and arrhythmia) but wanted to share how they helped me.
Still interested in hearing how the acia berry and menopret is working!
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Menopret is working well still !
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I always would get an "aura" before a hot flash. It was like a tensing up of something internally mostly in my torso and head, probably caused by the blood vessels opening up
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REN-----I two had a drug interaction with a slow channel calcium blocker--norvasc/amildopimine. CA channel blockers can enhance the effect of Aromasin by 75-150%, Arimidex& Femara by 50-75%. I completely failed on the second two. Why I can even come close to tolerating aromasin, I didn't know, but as of today, I think it's the Savella. I found Genelex A very sophisticated drug checker in 2nd week of Feb 2010, it was my third week on femara. Couldn't go off the CA blocker so quit Femara. ALso, found out through that drug checker that this family of drugs interacts with cytoxan. One chemo almost killed me. Since no one was willing to try to figure out why, I said no to any other chemo.
My flashing pre Savella was so bad I got a serious ---worse than MRSA skin infection b/c I was constantly wet. Flashing now since I started ARO in Nov2010 hasn't been so bad, again as of today I know why.
I'm on Savella for the fibromyalgia induced by AROMASIN. It is a SSNRI. I so would like to have DR. Freedmans opinion of which SSNRI or SSRI would be best. His comments about why clonidine works in relationship to norephinepherine, makes me wonder if the SSNRI would work better for hotflashes b/c It affects norepi as well as serotonin.
Plus I feel like a kid in a candy shop. If we have uncovered the "something" pre flash. There may be some serious research in it. Anyways I said he could name it. LOL
Shannon---------- Yeah menopret------I have yet to study the drug, but I'll get there.
Rose and all I'm hoping they get back to us. Vicki took notes on everything. She had to call him at home. To get his permission to use the material. She called back in less than an hour, I was impressed. Thats when I decided to call back and tell her about our"aura's".
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A yoga teacher that I go to has what she calls "cooling breath". When you breath in, roll your tongue. This causes the inhaled air to become cooler. I haven't really experimented with it, but it sounds like it could be considered similar to what SAS mentioned about paced breathing. It's just taking it a step further.
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