Hi everyone.
I started having hot flushes last year during my chemotherapy, and they have continued ever since. ive been on Tamoxifen for almost a year now and the flushes show no sign of easing off! I tried acupuncture over Chrtistmas/January but it did nothing to help. In bed at night, I feel like I am going to ignite!!!
I finally relented yesterday and went to my GP, after speaking to my BCN. She has started me on Clonidine 50mg twice a day for 2 weeks. After the 2 weeks she wants me to phone her to let her know Ive got on. If theres an improvement she’ll put me on a repeat prescription. If theres not she’ll increase the dose to 75mg twice a day. And if Ive had and unpleasant side effects she’ll change me to Venlafaxine.
I took 50mg last night, and 50mg this morning and, dare I say it, Ive been a bit better today!!! (Fingers crossed). She said I should see any benefit quite quickly. The proof will be when I go to bed tonight!!
Has anyone else tried Clonidine and had positive results?
Thanks
Mandy x
Hi Mangochutney
This reply is just to bring your post to the top. I hope you get some replies soon
Very best wishes
Janet
BCC Moderator
Hiya,
I haven’t tried clonidine - but proved to myself recently that if I stay off alcohol and coffee I have very few sweats…hmmmm. Mine are much worse in the summer months and also periodic, so i can go a few weeks without and then get a batch…also they do seem to have improved over time - I am now exactly two years and a week into my tamox. Hope it works for you,
n
I haven’t tried clonidine but I was on venlafaxine for a couple of months whilst I was having Herceptin as the hot flushes were horrendous. I took 37.5mg daily and it worked marvelously on the flushes. Unfortunately after a couple of months I started having weird dreams and couldn’t sleep and I also suffered nausea with them, so I weaned myself off them. Within a couple of months of finishing Herceptin my flushes stopped so I haven’t needed anything else since.
I think Clonidine works for a lot of people.
I have been recommended sage tablets so am going to give them a try - starting tonight so will see how I get on. Anyone else tried them?
Hi
I have had clonodine for about 6 months fine at first stopped all but a few flushes but stopped taking them 2 weeks ago as was having headaches alot! and couldnt figure out why they have completely stopped since stopped taking the clonodine not on any hormone tablets as TN so I can anly assume it was the clonodine. Am going back to GP to see if she can give me something else as hot flushes back with a vengeance!
Jill x
Ladies
I take AIs (letrozole, then changed to anastrozole) and had dreadful hot flushes.
Several things helped -
Junking the memory foam mattress, they reflect heat back up the body
Sleeping under 2 thin duvets/thin duvet and blanket so top layer can be thrown off
Chillows, I keep one under my pillow for night sweats and a small one under the sofa cushions for downstairs (google Chillow)
Changed to anastrozole, hardly any hot flushes more a sort of glow now and again - these drugs affect us differently apparently.
Hope this helps a bit
grumpy
PS tried venlafaxine - nightmares!!!
Sage - check with your clinic that it doesn’t contain phyto-oestrogens which are not good…
Thanks for everyones input.
Ive been on the Clonidine for 3 days now, and I think the flushes are a lot better. MUCH less frequent, and when I DO have them, they dont seem as hot. Although last night I woke in the night having a hot moment!!! (They are usually at their worst in the evenings and overnight.)
Grumpy, I have wondered about my mattress. Its a sprung one with a layer of memory foam on it. BUT it is soooooooooooo comfy.
I already have a Chillow, that I keep under my pillow and drag it out in the night when needed!! Although my face ends up sweating on it due to the plastic!!! Does anyone use a Chillow with a pillowcase on? And is it as effective?
Thanks everyone
Mandy xx
The best thing Iv found that worked is having your bedroom at a stable temperature, for me around 19c seems toworking for me. Openning all the windows before bed and closing them if needbe. Also I can’t sleep in the same bed as my husband as he triggers them from body heat. I don’t think theirs anything that willhet rid of them you just need to learn to life with them.
I used a chillow, worked for a bit but it warms up. Acupuncture did help.
Good luck everyone
Just to add to my above comment, when I go away for the night it upsets my routine and hard it hard to sleep as the rooms either too hot or too cold
Yes I use a pillowcase on my Chillows, and I take the little one with me on hols, which causes much hilarity with children - ‘Why has Aunty Marj got a special pillow?’ These are the same children who think my tattoo dots for r/t are in the wrong places because they don’t make a proper picture when joined up! Bless…
My mattress had a memory foam layer over springs. I asked friends to sleep on it one night and tell me what it was like for them. Neither of them got a wink of sleep due to being sooo hot, so that was it, into the back of the van and off to the tip staightaway! I had to sleep in the spare room til the new mattress was delivered and it has been bliss.
The best help has been changing from letrozole to anastrozole. I do get a bit of joint stiffness so I take a joint supplement and it seems to have done the job.
all the best
grumpy
Ha Ha Like your username, Danica! I take it you’re a Big Brother fan? 
Hi just a thought, have you tried tacking the tamoxifen at different times in the day to see if that helps? I take mine last thing at night to try to sleep through the effect! Might be psychological but seems to work for me x
This is interesting - I too started clonidine on Wednesday but 50 microgrammes at night, as it’s primarily for nightsweats. I was merrily putting up with the flushes but at my 6m breast clinic check they were actively offering it. So far I’m not entirely convinced it’s working for me - possibly less flushes but no less intense when they come and may be within my cyclic variation anyway (as I type I feel the temperature rising!!).
I use a chillow and love it - am on my third having worn out the first and liking to have two to swap over when they heat up. I love my chillow and have been known to put one under my feet or on my forehead too!! Yup, mad as a hatter.
I tried taking the Tamoxifen at different times and even in two 10mg doses - for me it made no difference, but some people certainly say it works for them. Likewise some people seem to have more/less effects with different brands.
I will watch with interest how the clonidine works for MangoChutney and keep you posted on my own experiences of it.
Hi, I will also be following this with interest, as hot flushes are nearly driving me to drink!!.. My chillow certainly helps, and really wanted to avoid medication but am getting a bit desperate, they make me so ratty and miserable… Are these tablets anti depressants as that is all I was offered when I went to the doctor about them. XX
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Hi Jay,
Clonidine is a beta-blocker not an antidepressant. I would not have asked for any drugs to address the flushes but there was a poster up at the clinic saying ‘if you have night flushes speak to the doctor or nurse today!’ so I did. So far I have no clonidine side effects 
and they would be obvious and immediate I think.
Hi girls.
RevCat, interesting that you started on Clonidine the day after me!!! I certainly think they have helped. (Maybe a placebo effect?!) Much more bearable, much less frequent, much less intense when they DO come.
However, as I said in my previous post, Ive still not conquered the Night time flushes. Ive got to phone my GP back on Monday to tell her how Ive gone on, and she will either put them on a repeat prescription, increase the dose if not working or change me to Venlafaxine.
To date Ive not had any side effects, and they are helping. But what I want to ask her is if maybe I could increase the dose to 75mcg in the evening, to try and suppress the overnight flushes more.
I’ll keep you all posted!!! RevCat, keep me in the loop with you!!!
Mandy xx
I was on tomoxifen for five years I too had very bad hot flushes and in the beginning night sweats as well. I could not resolve the former but my gp recommended trying to cut out caffeine I went on decaf tea and if it was co- incidence or not I do not know but after a couple of weeks the night sweats stopped and I have never seen them since. Today I am on femara I still incur the hot flushes so maybe I am just prone to them as a lot of ladies find they do decrease after taking the tomoxifen for a while. Good luck to all.
Clonidine update!
OK now a full week in to taking my 50 micropgramme at night.
GOOD - no side effects whatsoever
LESS GOOD - still flushing and night sweating almost as much if not as much
Will complete course and speak to GP about increasing the dose to 75 microgrammes and/or twice daily. Not about to expend too much energy juggling drugs though.
Mangochutney hope it’s working for you.
JL good to know the decaff worked for you, it’s a really good route if it works (as is avoiding spicy food) alas not for me, that was the first thing I tried. Guess I’m just hot stuff!!!
As my lovely BCN says ‘winter is coming’!!!
When I was a young thing and going through the menopause I used Clonidine and it helped slightly. I wore lots of natural fabrics and a fan was always in my bag. The problem with Tamoxifen is it can cause the menopausal symptoms to be more severe, although I am told that it does get better after a few years!!! The good thing is some might say it shows the Tamoxifen is working well !!! There are however some antidepressants which do help, so do go and ask for your GP 's opinion …you will not become “addicted” and they will be much more effective than Black Cohash etc I think BCC has a booklet on the subject. You can probably download it, but if you ring the Helpline they might give some additional useful advice to you. (They can also send out the factsheet.)
Rev Cat just think of the warmth you give out with each flush! So useful in cold old Glasgow churches !!
I so hope you all get some relief- it is no fun while it is happening.