I’m just wondering if anyone has had a similar experience to me.
I have been on Tamoxifen since December 2007. Shortly after starting it I developed Tinnitus. I didn’t associate it with the Tamox, it isn’t listed as a side effect and so I assumed that it was my ageing ears!!! I was 60 when the Tinnitus started.
Early this year I had a break from medication for 3 weeks and during the 3rd week my Tinnitus practically disappeared… oh joy!! It was wonderful.
Yesterday I went for my check up at the hospital and mentioned this to the consultant. He checked in his book and said that Tinnitus is not listed as a side effect of Tamoxifen.
I’m sure however, that I’ve read other posts on this forum from people who have developed Tinnitus after starting Tamox.
The consultant said that if it is the case that people are being affected in this way by Tamox then it should be reported to the manufacturers.
Please could you let me know if you have had a similar experience and your age.
This is very timely. I have a ringing / buzzing in my left ear which started a couple of weeks ago and is still there. I’ve been on Tamoxifen since November or December (can’t remember exactly when). My head feels a bit heavy and fuzzy too though, and it has all started to worry me a bit (as every little thing that could be interpreted as a possible symptom of something nasty returning tends to do). However I hadn’t considered Tamoxifen as a possible culprit. I’ll follow this thread with interest.
scottiedog x
I’ll follow this thread too, as I developed tinnitus about 25yrs ago due to stress, which was treated with a course of stemitil and has been fine since - I just have a very faint whistle esp. in left ear which gets slightly louder when I’m stressed. Needless to say, with all the cancer sh*t going on, it’s a bit louder now, so god knows what it’ll be like when I start on tamoxifen later in the year.
Thanks for your replies. Just to say that it may not be the Tamox but it just seems strange that my Tinnitus disappeared when I stopped taking it and has come back now I’m taking it again.
Initially it didn’t occur to me that it was the Tamox either. I asked my GP about it and he said it was my age!!!
It could be stress causing it as is Steph10’s experience. None of us are having a stress free time at present. I just wondered what other people’s experience is.
I have had a weird sensation in my right ear only for the past couple of months - as if something is fluttering in my ear- the whole ear area feels strange -very difficult to describe. Sometimes it’s as if the ear canal is contracting ! It happens every day,sometimes I don’t notice it. When I am very quiet and still I can hear my blood pulsing -very curious ! My gp thought I might have an ear infection and gave me drops but they made no difference. He seems to have given up as there’s nothing he can think of to do !
Have been on tamoxifen since September09
I have the butterfly ear thing too but I had it for years. Drives me mad sometimes. Haven’t got a clue what it is but it’s nice to know someone else has it. Everyone I’ve told about it looks at me as if I’m in loopy land. Well I think I might be actually but not because of my butterfly ear!!
Hollymeg
Has your tinnitus come on since you started taking tamox?
I was really pleased to find this post on Tamoxifen and tinnitus as I developed it a while back but like others did not associate it with the Tax. Its really starting to distress me now as I am noticing it all the time. Of course bad at night. I am seeing my GP tomorrow to try to get investigations as to what is causing it.]
I am 58. I feel very depressed that I might be looking at the rest of my life with this awful ringing.
Has anyone found anything that helps apart from stopping the Tamoxifen???
Hi Everyone, Glad to see this thread. I’m not on tamoxifen although I was many years ago after inital dx. However, I’m now on Arimidex for secondaries and I’ve noticed an odd sort of pulsing/throbbing sound in my ears. It comes on mainly at night or if I’m sitting in a very quiet room (no tv etc). I did wonder if it was the Arimidex as I’ve never had anything like it before, so although I’m very sorry that there are lots of other ladies suffering, at least I know I’m not alone.
So sorry you are feeling depressed about it Grace, I try to ignore it and hope it’ll go away, I didn’t consider seeing a doctor about it, so I’ll be very interested to see how you get on if you would be kind enough to post and let us know.
Otherwise, hope you are all having a good (and relatively quiet day) Sending lots of love and hugs, Dianne x x x
I had problems for the first year after finishing taxotare and was told that it was one of the long term side effects for that… it seems to have gradually gotten better but I was warned it could be lifelong…
I’m so sorry that you have this side effect from tamox. It seems that there are quite a few of us who have the same thing.
I find that if I get stressed it gets worse until sometimes it’s almost like a screaming in my ears. I try to keep myself calm and have some chilling quiet time and I find that helps.
I went to my GP who offered me a hearing test. At the time I seemed to be at the hospital every 5 minutes and so I said I’d leave it but over the past few weeks I’ve been thinking that I might go back and ask him to send me for a test.
I should be interested to know what your GP says. Tinnitus is not listed as a side effect of tamox and I wonder if we should report it.
I’m having a break from tamox for a few weeks. Mainly because my Nolvedex D supply as ended, the generic tamox was horrendous for me. I have an appointment with the onc at the beginning of September so I’ll see what he says about changing my medication.
I’ll let you know if my tinnitus goes away like it did last year when I had 3 weeks break from tamox.
Hi everyone sorry this is a late post but have only just seen it . I could not believe what I read when I saw tinnitus and Tamoxofen.
I have been on Tamoxifen for nearly four years and for th elast couple have been suffering from tinnitus. I am 54 and thought it was because my ears were getting old!!
So glad I read your comments.
I dont know if this is relevant but I got slight tinnitus (at noght when I put my head on the pillow) with my menopause. I started HRT and it stopped. I wish I had never taken HRT now that I have had BC but at the time it was a relief! GP said the noise in my ears was hormone related - so its not surprising if Tamoxifen could also do this.
hi there…i was suffering with tinnitus…which changed to a pulsing…went to docs and i had raised blood pressure…after monitoring i am now on blood pressure tabs and the ringing and pulsing has now gone…just another avenue to consider girls…i think my raised BP is down to the tamox …luv to u all pauline xxx
interesting, I had mild tinititus before BC but it does seem much worse (louder and more shrill) now particularly in the evenings and when I go to bed. I am on tamoxifen and did have taxotere as one of my chemo treatments so I am wondering if it is worse because of that or if it is just age.
Just found this thread. I am on Letrozole and I have developed tinnitus, a whistling noise. Most annoying. I came to the conclusion that it must be a side effect of low oestrogen or poor sleep.
I know from previous research that avoiding dairy makes a difference. Maybe this is not suitable for chemo, I don’t know. But there are lots of useful self help books out there.