has anyone managed to glean the science behind why tomazefin causes hot flushes in some people??
I’ve done my best but could still only cobble a theory together. So here is another of grannydrums crackpot theories waiting to be shot down in flames by someone who knows better.
I did read that there is a bit of your brain that controls your body temperature. If you are too hot then it causes you to sweat. but it does not react until your body temperature raises by say 2 degrees. But if you have low levels of oestrogen or testostorone in your blood then the switch turns on and off at a lower difference in temperature, say 1 degree. so a normal person can get hotter or colder by 2 degrees and not sweat, but someone else only needs to increase by 1 degree to flick the switch.
Now it seems to me that tamoxifen works by turning eostrogen receptors in breast cancer off, but we know it turns some body cell eostrogen receptors on (like uterine cancer and bone growth receptors) so perhaps the tomaxefen plays around with the hormone receptor in that bit of the brain, and that is why some people get such bad night sweats.
But what about the lucky ones that dont get this SE. Well some peoples temperature control switch works different to others which is why not everybody gets the same menopause symptoms so perhaps that is why not everbody gets tomaxefen flushes.I was interested to read that mild anti-depressives stop the switch turning on so quickly. so perhaps that why those tablets work for some people. And isnt EPO a type of eostrogen, perhaps that is why that works for some and not for others.
anyway there was one list of thing you can try for night sweats. Might help somebody.
-Avoid any foods, alcohol or caffeine within 3 hours of going to bed
-Avoid exercise, hot liquids or smoking within 3 hours of going to bed
-Drop the evening thermostat by about two or three degrees without adding more covers
-Wear light bed clothing
-If you feel stressed out from daily work or family events, take at least an hour before bedtime for some relaxation activity ( if you cannot “afford” an hour before bedtime to do this, there’s your answer)
-Use fans during the day.
-Wear clothing made of natural (i.e., cotton) materials.
-Practice deep, slow abdominal breathing, taking six to eight breaths per minute: Practice 15 minutes in the morning and evening, and use this technique in conjunction with “premonitions” of hot flashes. This can produce a 50% decrease in hot flash frequency.
-Exercise or walk, swim, dance or bicycle every day for 30+ minutes but not within 3 hours of bedtime
Very interesting reading, and your suggestions re food alcohol and caffine prior to bedtime actually mirror discoveries I made by trial and error. I also find that for some reason chocolate in excess any time adds to my hot flushes. My tipping point is 3 cholocates. More and I get hot flushes, stick to 3 or below and I am OK.
thats interesting about chocolate–is that anytime during the day or near bedtime??
i am realy hoping that because i did not get any hot flushes at all during menopause then mine is one of the brains that does not get triggered easily.
Cutting out alcohol 3 hours before bed might be a problem for me,
Hi O&L
Your post has got me thinking !! I have had no bad flushes/drownings all week in fact the total opposite I have been really cold and couldn’t seem to heat up. I have also managed a good sleep for this period. I had hoped that it was se’s from tam settling down (wishful thinking!!) Then last night I had very disturbed night back to the way I had been. Oh well I thought I must have just had a good week but then I read your post and I had some alcohol and a packet of crisps just before I went to bed, and thinking back that has happened quite a few times.
I will now monitor my nights when I have eaten after the 3 hour window to see if it makes a difference
thanks for info
Lizz xx
choccie muffin if you wake up just before a hot flush perhaps the deep breathing everytime you wake up-- dont know if it will help. I wake up just before a bad night cramp and can mostly relax my leg before it starts. Seems odd to suggest that deep breathing can help with sweats but who knows
Although I absolutely love chocolate my personal observations really only cover chocolate of an evening, anytime after dinner really. If I gave in to chocolate during the day I would be dealing with a whole other problem of being the size of a small house!
Although my hot flushes at night are now mainly under control I also wake up just before one hits.Next time I will try and remember the deep breathing and see if it helps.
I wake up just before a hot flush as well. I get them at any time of the day or night and they’re fairly frequent.
I don’t actually sweat with mine - I just turn into a human radiator for a few minutes.
One peculiar thing that I haven’t heard anyone else mention so maybe it’s just me - just before and during a flush I can smell a sort of disinfectant/metallic smell. Does anyone else get this?
Interesting post OAL. I admit to being flummoxed over the hot flushes, and often wonder why the researchers haven’t come up with more information on WHY. When we were young before all the hormones starting kicking in we didn’t have this problem. I have looked at the research and there is very little optimism that there’s anything that really works.
CM - I also find the waking up about a minute before the fkg thing kicks in and found this weird too. Its like ‘wake up, ohoh, here it comes…’ Gives me a minute to get my fan remote control out for a blast.
I haven’t reached the tamoxifen stage yet…on 2nd FEC chemo. My lumps were oestrogen pos and I’m getting hot flushes…3 times in bed this morning feeling like burning up from the inside. I went thru’ the change a few years ago so thought this would be out of my system but I guess there is a little bit left? Haven’t had hot flushees for quite a while. Is this normal can anyone tell me please?
I also wake up before a flush …why is that? Why don’t we just sleep right through the blasted thing … I’m not even on Tamoxifen yet so I really hope it doesn’t get any worse than this …
I didn’t get hot flushes on FEC but I had my first one the evening after my first Tax. I panicked at the sudden heat and took my temp - couldn’t believe it was normal!
They got a lot more frequent when I started Tamoxifen at the end of May and don’t seem to have changed much since then.
I’m 45 by the way and was not menopausal before all this - the usual age in my family seems to be about 50. I had my last period at about the time of FEC1 in late January and nothing since then, so FEC definitely affected my hormones but just didn’t cause any flushes.
I’m another one who wakes up just before a hot flush. My GP reckons it’s the hot flush that wakes me up, but I definitely feel normal temperature when I first wake up, then wham, my thermostat goes haywire! There must be some sort of early warning sign that the body detects, before you actually start to over heat, and that’s what causes you to wake.
As ChoccieMuffin said, the hypothalamus is the control centre in the brain for temperature. But it also regulates sleep, so it’s all connected in some way. The loss of oestrogen affects the hypothalamus functions - lucky us!
Really interesting thread. I started hot flushes during FEC continued during Tax and now with Tam O’Xifen, the Irish leprechaun of a drug. I too wake up just before a boil/drown though less wide awake since I got a chillow pillow it has to be said. I have tried the list of things OAL mentioned to no avail - and last week on hols drank thrice as much tea and ate ten times as much chocolate as suual - and no change in flushes. As I am reluctant to take more drugs and as a brand switch seems to have made minmal difference looks like I’ve another 4.5 years of boil ‘n’ drown to go… woo hoo!
Fascinating thread - my onc did not believe me when I asked her if this was normal! But am so glad to read it is not just me. 20 years ago when I was on Tamoxifen it happened and now am on Arimidex for a recurrence and it is happening again. I wake several times every night just before a flush.
Interesting thread. I haven’t had any hot flushes (been on tamoxifen since 1 June), but I feel generally ‘warmer’ all the time but not uncomfortable. I’m also taking citroplam for anxiety - wonder if this is helping with the non-existent hot flushes??
Thanks O&L, a year into my tamoxifen I can now sense the very very beginings of a flush (when awake!!) so take off cardigans, socks etc and they are much less severe then they were originally- work colleagues now quite used to it, this periodical dressing and undressing I do when I don’t yet even look hot!!
But your post got me thinking about whether this happens at night too cos i often wake up chilly, ie have removed duvet from self ( and burried the OH in the process!!) so perhaps I’m doing it cos I feel a flush coming …either way I still wake up !
Only 3 years 11 months to go for me - and if I still have menopausal symptoms when I come off Tamox I will cry!
best Nicola