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Anyone on Tamoxifen developed Tinnitus?

59 REPLIES 59
noo
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Fran,

How’s very lovely! Thanks so much for your encouraging message! 😇 I shall keep being very positive on this 😁

All the very best

Noo

frances57
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Noo,

Your correct exemestane is for ladies post menopause.  l can’t believe how well l now feel in general but l know it’s early days and everything could change again. I do hope if you decide to try melatonin it helps.
I am sure you are aware of all the tinnitus aids there are to help manage it. The two l have found to be best for me are the Relief Resound app which is really helpful during spikes and a sound machine that l keep on my desk when working to avoid silence.
l have talked to 7 people who have had tinnitus with various causes, for 5 of them it went away completely the quickest was 3 weeks the longest was 2 years. The 2 others who have both had it in excess of 3 years said their tinnitus had habituated and was at such a low level they were really only occasionally aware of it at night. 
This is such a horrible distressing side effect and to get it at a time when we are feeling at our lowest feels so unfair but try to stay positive it does improve.

Best wishes

Fran 

noo
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Frances57, 

Many thanks for your reply. That is very encouraging! Also, it looks like changing the medication to Exemestane is working well for you too re: tinnitus and blood pressure and joint issues. I don’t know much about Exemestane but I think it is for ladies who have already had mono pause before starting the medication so I probably would have to stick to Tamoxifen as it believe it is only option for the hormone therapy drug for pre-monopaused ladies.

All in all, this is very helpful, thank you!
All very best.  

frances57
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Noo

Yes it helped me, l took it for a month. Volume definitely went down especially during the day and l was able to sleep at night for 6 - 7 hours without the tinnitus waking me. 
l  took it for a month as it can only be used for a total of 3 months, l wanted to keep it in  reserve in case l got a bad spike again.

I still have tinnitus and have had a few bad days and nights since but l find it more manageable knowing l have something that will help if l get desperate.

l stopped Letrozole 4 weeks ago as l had developed high blood pressure amongst other things. One week ago l started Exemestane, its early days but l am having periods now were l can hardly hear the tinnitus, my blood pressure is back to normal and joint pain etc improving.

l hope this helps

noo
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi frances57,

So, does the daily melatonin 3mg work? 


Thanks. 

frances57
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Thank you for your reply and l am sorry you are experiencing tinnitus as well and not had any improvement .This really is an awful side effect as if it wasn't bad enough dealing with breast cancer.

I am now convinced it's the medication causing the tinnitus, l have spent a lot of time looking at causes and treatment and believe it's due to the blocking of oestrogen by Letrozole. There is published research from other countries showing a hormone connection to tinnitus. The research looks at a connection between tinnitus and menopause/HRT as well as tinnitus and menstrual cycle and tinnitus and pregnancy. It's not unreasonable to think it could be caused by letrozole or tamoxifen 

l decided to go back on letrozole and give it another try as it's the best medication for me. I have been back on it now for 10 days and over the last few days the pitch and volume has got even louder. l also have hyperacuisis that started at the same time as the tinnitus and that's also worsened over the last few days but l am just hoping in time these side effects settle. I have been referred to ENT so l will at least try to stay on Letrozole until then. 

l have started this week taking Melatonin 3mgs at night. There is some good evidence from a Ohio university trial showing improvement for 50% of participants after 30 days, it was also double blind trial, so I am hoping the Melatonin works for me, it might be worth asking your GP about it. I hope you get some improvement soon.

Trace12
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi there,

I have been on Tamoxifen for two and a half years so far. One and a half years in, I started experiencing Tinnitus. It has not stopped yet. I looked up possible causes and none of them could account for as to why I had it. I asked my oncologist and of course I got it was not the tamoxifen. I had many other side effects that he said were not from tamoxifen as well. I went off it for a month and many effects left, to which he had to admit he was wrong. Unfortunately tinnitus did not go away, and it was not from menopause as I was not in menopause at the time. A year later I just saw an ENT specialist. He could not find a reason as to why I have tinnitus, and actually said that even though data does not support that tamoxifen causes tinnitus, he will not rule it out because it was the only thing in my life that had changed. So I wholeheartedly feel this is because of tamoxifen. I have read other blogs that people have stated they believe it too. I know that does not help you, but I just wanted you to know you are not alone in struggling with this and feeling medication was the reason.

frances57
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi,  has anyone stopped their tamoxifen or Letrozole and their tinnitus has gone away?

I developed tinnitus after one week on Letrozole, l had been on HRT for 6 years before BC , stopped HRT 5 weeks before surgery and started Letrozole 2 weeks after surgery. Oncologist, GP, ENT have said it's not a side effect of Letrozole  and more likely to have been caused by the ibuprofen l had been taking. I stopped Letrozole for 4 weeks and tinnitus no better, it's 24 hours a day really loud and l am struggling to sleep more than an hour at a time, can't concentrate and nothing really masks it or helps . I have to decide weather to go back on to Letrozole or change to tamoxifen, l would appreciate any advice.

Deekoh1
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Yes i have tinnitus really bad and it is getting me down. I have gone through all kinds of hearing tests and pressure tests and no one has ever suggested it might be the tamoxifen. 

cbuob
Member

Re: Anyone on Tamoxifen developed Tinnitus?

It' keeps me up and is really driving me crazy!

cbuob
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Yes it seems to get worse daily. Has anyone gone off tamoxifen for a week or two to see if the symptom goes away?

oscar12
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Jan
Yes ive had this since taking Tamoxifen and it's driving me crazy ! I'm glad to see others have had it while on Tamoxifen as I was beginning to think there was something far wrong with my ears if head !! I'm 56 and just getting over the shock of Bc surgery and radiotherapy then this happens !! Hugs to you xx
oscar12
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi everyone ! I finished radiotherapy in June this year and started taking Tamoxifen . Now I have the horrible tinnitus that's driving me crazy ! Thinking of going to a Chinese herbalist for acupuncture to see if this would help as it is so depressing and really brings me down !! 😩😩 I did develop tinnitus after my diagnosis in March but it did go away after op ! So I don't know if it's stress related or the Tamoxifen !! !!! ?? 😡😡😡
Laineybo
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Daisyboo

 

Mild tinnitus is quite common but tends to be more common in the first few weeks.Mine started after month one and lasted a couple of weeks.

I think also that your body becomes accustomed to it and the brain tunes it out

 

Best wishes to you

 

 

 

Daisyboo
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Oh my god someone please help me, ive been on tamoxifen for 1 month and for the last 2 nights have woken up (due to numerous hot flushes) to a very low frequency humming noise in my ears.

it sounds like a lorry is sat lidling somewhere and kind of vibrating in my ears and head

 

never thought it would be to do with tamoxifen until my husband mentioned it.

 

does anyone else hear this as a low frequency at night times. im so tired i cant sleep when it wakes me up. ended up sleeping in the spare room from 5am last night as couldnt bear to hear my husband and dog both snooring in our bed!!

 

ive not had chemo only radiotherapy

 

thank you x

Jacqui47
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi, I have suffered from tinnitus in the past due to stress I think or possibille a long antibiotic course I was taking. It comes and goes but I’ve had it for over two years. I just finished 15 rounds of radiotherapy and it has developed again, much worse that ever. It’s very depressing. I’ve just started tamoxifen but the ringing was there before so I’m thinking it could be connected to the radiotherapy??

It’s trying me mad and if so many of you are connecting it to tamoxifen then I’m not going to continue it. The side effect is too debilitating. I know tamoxifen gives me a extra 6% in the battle of cancer not returning but I just can’t bare this noise...I’d end up jumping anyway!

So holding off the tamoxifen and hoping the tinnitus goes as I heal from my radiotherapy.

Interested to hear how everyone is getting on
Xx
Lizielou
Member

Re: Anyone on Tamoxifen developed Tinnitus?

I developed tinnitus shortly after starting tamoxifen. No one seemed the slightest bit interested however after about 18 months, the ear developed an infection and the tinnitus disappeared. I was referred to ENT for the infection and one consultant said that the tinnitus was related to radiotherapy on that side rather than tamoxifen. I had not considered this however it seems likely as it was all around the same time.

 

Hope this helps xx

ladybowler
Community Champion

Re: Anyone on Tamoxifen developed Tinnitus?

JOanna

 

Just realised that you are already on the thread that I was going to look for.

 

helena

ladybowler
Community Champion

Re: Anyone on Tamoxifen developed Tinnitus?

JoannaB

 

Hello and welcome

 

I do have a ringin in my ear but I have had it since before I started Tamoxifen, but I seem to remember that someone else was asking about this on the forum, I will try and find the post and let you know.

 

Helena xx

JoannaB
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Ladies I don't know whether this thread is still active but I started tamoxifen in June and after a few days I developed tinnitus. I am worried that this drug is going to damage my hearing. My oncologist said in 15 years of practice no one has ever reported tinnitus before! There are so many people on this forum.. surely they can't all be wrong. I'm 48 years old and facing 10 years with this buzzing in my ears! Very depressing to say the least. Best wishes to everyone xxx
Grammy
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Has anyone had their tinnitus go away after stopping Tamoxifen? In April 2018 I will have been on Tamoxifen for 5 years. Since I tolerate it very well I will need to decide whether not to stay on it another five years. However in the last six months I developed tinnitus. Sometimes it's so loud I feel like it competes with the TV.
Glo462
Member

Re: Anyone on Tamoxifen developed Tinnitus?

This is all good to know.  Thought it was just me.  Was on tamoxifen for 5 years and just weaned myself off been off for a week now.  I developed the ringing in my ears earlier this year and it comes and goes.  My hair texture changed didn't fall out but got thinner and my nails ...I had a hell of a time ...this is so helpful you think you are nuts and I came across this site and other people have the same problems....wow..like cancer is not bad enough ...Thank God to be alive but these medications are not good for everything obviously ....Is there anything I can take for this.  Bought something over the counter at the drugstore..but didn't help.  For the leg cramps and stiffness I take Glucosamine with Chondroitin and it helps. About two years ago he had me on Letrozole for 6 months OMG I was Ike 90 years old every time I wanted to get up so he put me back on tamoxifen .  Just wish all this would go away.

Alieck
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Lkeriegirl,  a lot of people on Tamoxifen complain of tinnitus and some studies show that taking the drug can cause hearing loss which in turn can lead to Tinnitus.  You can look on the British Tinnitus Association website as they have different coping strategies or it might be worth you having your hearing checked to see if there is the problem.   Regards.  Alison xx

Lkeriegirl
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Also new past few months is leg/feet cramps terrible.
Lkeriegirl
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Omg I'm feeling same. I started taking Tamoxifen over year ago. Loud ringing in my ears for past almost six months or so. Horrible sleeping also nightly.
isaurayolandacruz
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Everyone,

 

I just found you guys and I am relieve to read that I am not alone with this ringing in my ears...I had been on tamoxifen since november 2015 and this ringing is becoming worse and worse... and reading all your messages is clear that Tamoxifen can be causing it.

Someone mention that it maybe good to report this because in the sides effects the ringing is not mention, and I am more than sure that the medicine is causing it...

 

Hug & kisses

 

Isaura

poppyj
Member

Re: Anyone on Tamoxifen developed Tinnitus?

I've been on Letrozole (Femara) for just over 2 years and had most of the known side effects, including flushes/joint pains/brittle nails.  During the past 2 weeks I've had "fuzzy" hearing (Tinnitus?) and a headache which I put down to stress and/or a "tightness" across my shoulders. I hadn't associated it with the Letrozole but reading your posts has made me wonder whether there is a link.

Hazel Mary
Member

Re: Anyone on Tamoxifen developed Tinnitus?

 

 Finished Letrozole about 2 years ago, still have tinnitus so think it could be lack of oestrogen and menopause causing mine.

jill stafford
Member

Re: Anyone on Tamoxifen developed Tinnitus?

I have been on Tamoxi for 8 years and have just taken 6 months break from it - to get better sleep, better concentration and to allow my hair to stop falling out.  I have been back on it for a few days now and the tinnitus I had when on chemo has already started again.  A definite link for me I think.

Peartree
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Ditto! I've been on zoladex/ tamoxifen (no chemo). I've found stress a huge trigger, and also think jaw clenching from stress in my case worsens it. Meditation helps accept it but it's still Damon annoying..
ChristineR
Member

Re: Anyone on Tamoxifen developed Tinnitus?

I have had tinnitus for many years but it got a lot worse after chemo and it affected my hearing a lot. I was referred to ENT and now have hearing aids but sometimes it is so loud that I still can't hear when in crowds. I am also on Arimidex and hav been for almost four years so maybe this is making my tinnitus worse. It looks like these drugs have more side effects than we are told about.
hazelmary
Member

Re: Anyone on Tamoxifen developed Tinnitus?

googled tinnitus and menopause, could be a sympton.

hazelmary
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Just like to add I have had tinnitus since starting Letrozole, didn't have it whilst on Tamoxifen (5 years) so could be due to lack of Oestrogen and not the drug, just one thought

Scottygal
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Thank you for the web site. Yet another strong indication of tinnitus being a side effect from either the chemo or the Tamoxifen. No doubt in my mind the culprit is one or the other.
Scottygal
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Yes. In my fourth year of Tamoxifen and the tinnitus started like someone flipped a light switch. One minute it wasn't there and then it was. It hasn't gotten better and hasn't gone away and I am struggling with the decision to stop Tamoxifen to get some relief.. Very curious if it stops like it started.
Scottygal
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Ditto ditto ditto. I am the same age took the same treatment and I too have tinnitus. I only have another year of Tamoxifen but I think I am going to stop and take a break and see if this horrible noise stops in my ears.
jbug
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Yes I get it every now and then, quite annoying, especially when you are trying to fall asleep! Grrrrr!

Paula x

ragamuffin
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Bumping this thread for Fluffie

Guest user
Not applicable

Re: Anyone on Tamoxifen developed Tinnitus?

Hi everyone

Just to let you know that I've been off tamox now for just over 4 weeks and my tinnitus is exactly the same. Looks like it's a permanent feature.

But ............... I've lost weight!!! Every clous has a silver lining.

Hope you are all keeping well

J xx

hollymeg
Member

Re: Anyone on Tamoxifen developed Tinnitus?

i had overies out, was put into menopause by chemo and on tamoxifen.....hense no estrogen.....beginning to see a pattern her x

Guest user
Not applicable

Re: Anyone on Tamoxifen developed Tinnitus?

I didn't have chemo and I have tinnitus. As I say, I think mine is to do with either low oestrogen (Letrozole) or poor sleep.

Ann x

Rustyharas
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Also this one

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinatio...

The side effect is the same, in the "less common side effects" section

Rustyharas
Member

Re: Anyone on Tamoxifen developed Tinnitus?

Hope you don't mind me commenting here, but the title caught my eye as it runs in my family and I remember reading that a possible side effect of chemo was tinnitus. It's here: http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinatio...

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.

Hope his helps
X
Rusty

Guest user
Not applicable

Re: Anyone on Tamoxifen developed Tinnitus?

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.

Ann x

Guest user
Not applicable

Re: Anyone on Tamoxifen developed Tinnitus?

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.

hollymeg
Member

Re: Anyone on Tamoxifen developed Tinnitus?

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

Guest user
Not applicable

Re: Anyone on Tamoxifen developed Tinnitus?

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.

Guest user
Not applicable

Re: Anyone on Tamoxifen developed Tinnitus?

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.

x

Guest user
Not applicable

Re: Anyone on Tamoxifen developed Tinnitus?

Hi Grace

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.

Love and hugs

J xxx

Guest user
Not applicable

Re: Anyone on Tamoxifen developed Tinnitus?

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...

Theresa x