Hot Flash Forum!
Comments
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Thank you elimar. I am only on 37.5 mg dose but will speak to my doctor about doubling it.
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I have been noticing a very strange sensatation just prior to a HF coming on. It's rather new and also difficult to describe. It happens just as I am about to fall asleep. I'm almost alseep and then I feel very unsettled, as if something isn't right. There is no other way for me to describe it. It feels like it eminates from from brain, but before I know it, the almost sleep is gone and I'm having a HF. Luckily (thanks to Ativan) I am usually able to fall asleep without much difficulty after that. Other than that, my flashes seem to have ebbed due to the cooler weather.
Somthing I haven't mentioned...I went off of Tamoxifen for one month (due to weight loss issues), and since I have been back on it, the SE's I had seem less. I am hoping it is only the cooler weather and not that it is not being ineffective.
This seems like kind of a rant...sorry Happy Thanksgiving everyone!!
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wenweb, I tend to get the sensation of my brain being squeezed so tight, so I get an almost-headache, and with that squeezing (or even as a result of it) comes the heat. Maybe you're getting a similar headachy feeling, and that's what's waking you up from that almost-sleep. It's disturbing and disorienting, so yeah, I get what you mean about "something isn't right".0
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orangemat Thanks for your response, it's nice to know that I am not alone in the stranger effects of HF's.
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Linda-N3ypb: Sorry to hear about BMX complications. Been down that road. Do you have TE's? Glad you are feeling better! Rant away, that's what we're here for!
Orangemat: Edamame is OK b/c it is a whole food. Not everyday of course, but on occasion. At least that is what my docs told me and I'm hormone positive too. Processed soy (like soy milk and protein powder and bars, etc) is definitely *not*.
Racy: Some docs write for Effexor at 37.5 to start then double up after a few weeks. A lof of ladies have success with that drug. Did not work for me.
Wenweb and orangemat: I have that same "weird" feeling when I'm trying to fall asleep. My brain seems to always combine the thought with an urge to pee, so I always get up and go to the bathroom and the flash hits. The flash brings on a little anxiety, that is the best way I can describe it. You're not alone!
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Maybe the sensation that you are having is the 'aura' described as accompanying flashes.
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Thanks for your reply Rennasus.
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wenweb, I have had a change in hot flashes after being off tamoxifen for a while, then starting again. The first time they were horrible with near-fainting spells and flushing, but I re-started by taking half a dose for about a week, then going to full dose, and now I just get drenching sweats without warning and without the flushing or fainting feeling. I also had severe pain in my bones and joints the first time, but that is also less now, very tolerable. And my mood swings have been negligble compared to feeling like I was going crazy when I first started it. I have no idea why the fewer SEs, but it almost makes me a little worried that it isn't working. I will check with my MO in a few weeks when I see her.
Orangemat, I attended a talk by a physician who does research at Vanderbilt University on dietary soy compared to soy supplements, and she says whole foods with soy are fine, such as edamame, but to avoid soy supplemements. She was OK with processed soy such as tofu. She actually found lower BC rates in Chinese women who ate a lot of soy in their diets compared to those who did not. However, she also said she was not sure the same applied to other populations as there may be other genetic and/or environmental factors involved as well. It is very difficult to tease out this information, but her message was that if you use soy in moderation, it's OK, just not supplements.
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Linda I will be interested to hear what your MO has to say about the Tamoxifen SE. Please report in after your visit. Originally, I started on Arimidex, and after a one month break from it, the SE's came back with a wallop.
Re: the soy. I have also been told that whole food soy is OK, but to avoid it in the form of processed protein. At least there is some consistancy-2 others who have been told the same thing-wow! It is a conundrum why Chinese women have lower BC rates.
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Whew! Thanks so much about the info re soy, edamame and all. Being a vegetarian, it's rather difficult to find decent protein sources that aren't high in fat. I'll eat edamame once, maybe twice a week, and now I'm happy to know I can do that again. And good to know about tofu as well! I don't take any supplements, aside from those nasty chocolate calcium chews (which I hardly remember to have anyway). I stopped the soymilk as my post-run recovery beverage and replaced it with coconut water this summer, and I'm happy about that. Good to know!
I guess I haven't done all that much reading about HF... aura? Yeah, I guess that's how it might be described... but for me, it's more like my head is trying to make a diamond out of coal!
This is a great thread. Thank you all!
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orangemat I still use soy milk in my cereal. I've never heard of anyone using it as a post-run recovery drink (although I do add it to a post-run smoothy). I recently started drinking coconut water as a pre and post run drink. I was a big Gatorade drinker, but decided to cut back on the sugars in my diet. The coconut water is expensive, and I am not a fan of most of the flavors, but feel that it is a healther choice.0
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I switched to organic almond milk, and prefer it in cereal and in baking.
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I love almond milk, but it doesn't compare protein wise with soy or regular milk. This makes it difficult for me to justify. I guess that I impose this upon myself
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I guess I should've been more clear: I used to drink chocolate soymilk after my runs, since chocolate milk is known as a good recovery beverage. Can't stand Gatorade. Coconut water is an acquired taste, for sure.
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Hi again...just trying to read a bit and see if anyone solved the HF problems with a miracle food or pill yet..(wishful thinking!!) I had my follow up with my BS and since I am ER+/PR+ she said "limited" soy products are "ok" but try to limit them. I think I heard no more than 25 gms of soy a day?? I dunno...I will just avoid anything that I need to for the cancer to stay gone for good.
I did read that meat, especially beef and pork are big contributors of estrogen. So I have officially given up that for ever. The whole reason we are having hot flashes is because our bodies aren't making estrogen, right?? I mean, I am really not sure what causes them or why...If I started eating products that had estrogen in it, then wouldn't it just make me have more hot flashes when I quit ingesting it?? I eat limited quantities of chicken/turkey and make sure that it isn't injected with that 15% salt water crap they put in it (why do the companies put that in there??) I feel like my hot flashes have really improved over the last week AND I have had a low grade fever. I have been eating lots more fruits and vegetables versus meat as the main focus of meal time. I don't miss it either!!
It is all just so confusing...do this, don't do that...
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Cindy, after I had my oophorectomy and then immediately started Femara a year ago, I had at least one flash per hour, I think more than that in the evenings. They were baaaad. Roasting-sweaty-drippy bad. I also had those horrible hard chills immediately afterward. They were still really bad over the summer, but different -- fewer per day, but WAY more intense (and obviously no chills afterward in that wretched heat wave we had). Some of those summer flashes made me feel like I was having a mild seizure in a way -- like I sort of spaced out and couldn't think clearly or talk through them, and I was totally wiped out for at least half an hour afterward. But this fall, as the weather has cooled, they've shifted again. I hardly ever have a "seizure flash" anymore, and none of them last as long as they did in other seasons. I just have waves of being uncomfortably hot and stuffy where I absolutely HAVE to peel off a layer... but then it's over pretty quickly.
Last Thanksgiving I cooked in a tank top with the kitchen windows cracked to let some cold air in, and I learned later that everyone in the house was wearing two layers and about to freeze. I realized yesterday that I didn't need to do that this year.
Maybe that will give you a little hope that it might get better?
(And now that I've written all that, here comes a flash... wouldn't you know it?) :-)
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Having gone south of where I live for Thanksgiving, as well as staying in a home that is kept warmer than my home, my HF's returned with a vengence
Glad to be back home!0 -
hillck - During the day I have about 1 flash every 45 minutes to an hour. At night I take melatonin and chlortrimeton and manage to go 2-3 hours between flashes. So I think my flashes are a little less frequent but still similar to yours. Every now and then I realize I have gone about 1.5 hours during the day - especially when it's cool out and I am surprised. I hope that means they will get better in the future.0
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I'm going to the onc on Tuesday for 3 months checkup and will find out. I think my onc favors femara.
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Does anyone elses feet or hands tingle during a hot flash?
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mammalou - my hands do. When I was on the Tamoxifen they actually would tingle just before the hot flash hit. On the Arimidex not so much. But I get the itchy pricklies all over with the Arimidex.
Hot Purrs,
Jenn
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Thanks. That makes me feel better. I couldn't figure out how I could get neuropathy 7 months after chemo.
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What I HATE about hot flashes at night, and I may have posted this already - chemo brain! - is when they hit, and you HAVE to throw off the covers (especially off my lower back for some reason) because you really are convinced there is going to be this 'whoosh!' sound and it's YOU going up in flames. You FINALLY stop sweating, cool off, and then the freezing chills set in.
I'm NOT a fan of these!
Sweaty & Cold Purrs,
Jenn
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hillck, Yes, I felt like I was getting them a couple times an hour while awake, and either less at night or I was sleeping thru someof them. I could not stand that many and they were bad too. For me, my head felt like it was trapped in a dry sauna. I could feel perspiration forming on my face, but it never got drippy and luckily was never enough to soak sheets. Nov.-Mar. mine settle down a bit. I still had to have the kitchen window open all those hours the turkey was cooking. (My diet includes sugar, red meat, caffeine in the form of tea and chocolate, no wine. I am slim; walk & bike. The only time food alters my hot flashes is if I eat a large meal, or a very rich, caloric one, that makes my body do more work to digest it.)
robo47, I wrote about Effexor on page 30. It helps me. Also, Google "brain shivers" as I think some get these when coming off Effexor, so consider that.
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I was on hormone therapy after a hysterectomy 20 yrs ago. When I was diagnosed with DCIS in Sept. I was told to stop taken Estrogen. That is when the hot flashes and night sweats started. My doctor proscribed Efexir 37.5 for the Hot Flashes. It has been a God send. It has cured me about 85% of the Hot Flashes.
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I read the SE of Effexor and said NO WAY. I will deal with hot flashes versus putting another drug that you have to wean off of, IF it doesn't work for your symptoms. That is just me. I can't take a another risk factor in my life so will try to control the flashes via diet and exercise.
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Yes, Effexor (although it works for some) is no picnic. I don't really recommend it just for Hot Flashes (and mine is more for fibromyalgia, at the slightly higher dose.) Checking into natural/alternative remedies might be easier on the body/brain. Some have used accupuncture too. If you need chemical assistance, I'd give Neutontin (gabapentin) a whirl before the Effexor. It didn't do what I needed (for pain) but it also helps some with HF, and the S/E's aren't as evil.0
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hillck, I can 100% assure you that Cheetos will not make you go flash happy. Unless you scarf down a whole bag. Please, no inquiries on how I know this.
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I have tried several drugs for neuropathy, including gabapentin (Neurontin), duloxetine (can't remember the brand name), venlafaxine (Effexor), as well as NSAIDs, tramadol, topical cream, meditation, etc. Neurontin left me with a mushy brain, unable to carry on a conversation, couldn't find words, etc. Not good as my work involves a lot of talking. Duloxetine made me just plain crazy. Effexor is the last one... I have survived the initial SEs, it MAY have helped the neuropathy, but I can't tell that it has done a thing for the HFs. And it is probably the culprit for cold hands from peripheral vasospasm. My PCP increased the dose last week, but I have to say I am very uncomfortable with the idea of taking it for a year and then trying to get off of it. Not many good options, and today I am a bit negative about it all.
And then I think of what a wonderful musical service I was able to participate in today - we sang several pieces from Handel's Messiah, so there were certainly "moments of grace" between the drenching sweats and chills to the bone.
Robo, accupuncture may help. Also meditation may help a little.
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LINDA- how wonderful about singing from Handel's Messiah. I have such great memories of seeing my Mom sing in a Christmas performance when I was 4 months pregnant with my first daughter. It was also the first time I felt her kick!! My Mom has passed on last year (damn cancer!)-- but I will always remember how proud she was to stand up and sing with that beautiful choir, 30 years ago!!
Sue
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