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Did anybody get tinnitus from taking Tamoxifen?

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hlya
hlya Member Posts: 29

I have been on Tamoxifen for 1 month and start to get tinnitus which occurs all the time (not occasionally),  when it's night it's worse 'cause it's much more quiet; and at day time when it's not very noisy I can feel it as well.

Tinnitus is not mentioned on the material about SEs from Tamoxifen I got from the clinic....but want to know anybody got the similar situation and will it dissapear someday?

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  • Katiejane
    Katiejane Member Posts: 188
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    I have been on Arimidex for 2 years and have also developed tinnitus.  It didn't start until 3 months ago but is with me all the time. I have no idea if it is a SE of any of these meds. I did see an Audiologist and he said that I do have slight hearing loss.  Wonder if it's a side effect of chemo.? It is very irritating to say the least!   

  • hlya
    hlya Member Posts: 29
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    Hi, Katiejane,

     I guess it's from Tamoxifen.  I heard menopausal women could get tinnitus,  may I know how old you are?  I am pre-menopausal and got ILC as well...:(

  • mcgaffey
    mcgaffey Member Posts: 45
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    I developed tinnitus after being on Arimidex for one year. I am at 2 1/2 years now and It comes and goes but was awful to start with because I wasn't used to it. Now I am used to it and can "mask" it out so to speak. I am 62, with ILC. I had no hearing loss at my last check up. I had MRI to check that it wasn't a tumor etc. etc. and so forth. I have learned to live with it.UGH.

  • hlya
    hlya Member Posts: 29
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    mcgaffey:  Thanks.  should I requst for MRI as well?  But I am not sure whether they would order for me or not as it's expensive.

  • mcgaffey
    mcgaffey Member Posts: 45
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    hyla, My ENT ordered it to rule out the causes after I experienced vertigo and then developed tinnitus afterwards. The vertigo cleared up over time which I am so thankful for but the tinnitus is with me and sometimes is worse than others and sometimes is gone altogether?? I would talk with an ENT about your particular case. Best Wishes!

  • Katiejane
    Katiejane Member Posts: 188
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    HYLA,  I'm 53 and was pre- menopausal  when diagnosed(51).  They can't seem to tell me why this is happening!     Katiejane

  • hlya
    hlya Member Posts: 29
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    Thank you ladies!

  • Everett78
    Everett78 Member Posts: 45
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    After just a few days on tamoxifen I started with tinnitus and a difference in hearing.  It could be a hearing difference, but it is just weird in my left ear.

    How long does it last?  Does it go away?  I have an appt with my onco in a few days and I'd like to know if this is what I will have as long as I'm on tamoxifien.  thanks!

  • goodtogo
    goodtogo Member Posts: 1
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    Yes! I started to take Tamoxifen in February and noticed the tinnitus starting. It seems to be getting worse. I didn't see this side effect in any written material I was given, and the doctor didn't bring it up. I will pursue this question with my doctor. I am almost 55 and not menopausal. I wonder if it will go away when the medication is no longer a factor.

  • elfaco60
    elfaco60 Member Posts: 1
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    I have been on Tamoxifen for 9 months.  For the last 2 -3 months I have had chronic tinnitus.  I know other cancer treating drugs have been linked to this condition but have not heard about a possible connection to Tamoxifen.  

  • Kodapants
    Kodapants Member Posts: 18
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    I have chronic ringing in the ears.  I think mine is from chemo and it's likely permanent for me. It only bothers me in the evenings. I have never been on Tamoxifen.  I do know some antibiotics can effect hearing like Adrenamycyin.

    Hugs Koda

  • cincilady
    cincilady Member Posts: 1
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    I got tinnitus about 3 years ago.  Nothing out of the ordinary went on during that time in my life.  One day I could hear fine and the next day ringing in both ears all day every day.  I guess it's one side effect I won't have to worry about once I start taking Tamoxifen in about a month.

  • mugawump
    mugawump Member Posts: 1
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    Didn't see it in the lit either.  Driving me crazy!  Did Aromasin for almost 3 years but the joint pain, especially in the legs, was too much.  About ready to quit all of it!

  • whatnow
    whatnow Member Posts: 20
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    Bumping to see if any of you still have this, or if it is gone-same-better-worse. I was dx in 2005, Aromasin for 3 years (tinnitus), then Aromasin for 2 years. Today, I have diagnosed vestibular nerve damage (I have found online that these drugs are both ototoxic, but of course that may or may not be true). I have tinnitus 24/7 in both years (I think...it is hard to tell), I have diagnosed hearing loss in one ear (high pitched, doesn't seem to interfere with my daily life), but ALSO have a HORRIBLE intolerance to certain sounds (I had to hang onto the table to complete the hearing studies, dishes, gosh SO MANY things bother me. You could never prove by me that I have hearing LOSS...I think I have HYPER hearing. And while I am lucky it does not cause pain...it is more than just an annoyance, it can be debillitating at times. I also now have severe migraines - and I do not mean "headache". I do usually have some form of headache, and they vary in frequency, intensity, etc. But mine are migraine with aura. I read that once can have "vestibular migraines," so of course I don't know if that is what is causing mine...and if the tamoxifen was the culprit. But it sure looks like it.

    MY migraines involve transient visual loss (pretty common, and something I've learned to live with) but also cognitive loss (I cannot read, understand, speak...it is like I am having a stroke...I do not know my own daughter's name). I have seen MANY neurologists, none of whom have a magic pill. I've had MRIs to check for brain mets-all negative, done physical therapy to retrain the vestibular nerve, no change, and tried 4-5 medicines.

    I am closing my business because I cannot do the work...and petrified about the future...who will hire a 55 year old who can barely get through the day? I hate to see anyone else get this bad, so I'm just posting so y'all can know, think, talk, ask questions of your doctor, etc.

  • Chevyboy
    Chevyboy Member Posts: 10,258
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    I don't know HOW I found this thread, but glad I did! I started taking Tamoxifen in 2009..... Took it for 14 months, and lost my hearing. I just woke up one morning and could NOT hear out of my left ear! About a week later, my right ear did the same. After about a month, I went to my Doc.


    My Primary care Doc, thought my ears plugging up, was just maybe "allergies" or some sinus problem. I did the nasal rinses, took Claritin, etc. Nothing helped! I did this for another month!


    My Husband kept saying it HAS to be something you are taking.... And all I was taking was Tamoxifen! No chemo....


    Finally had my ears tested by the ENT my Doc sent me to.... 100% word recognition hearing loss in my left, but only 50% loss in my right. I got hearing aids over 2 years ago, and they are doing fine. My only problem now is I get such a build-up of wax, mostly because of the aids, that I have to use ear-candles almost twice a week, just to keep those pathways open in my ears, so it doesn't affect my hearing even WITH my aids!


    When this first started, none of my Doctor's would believe it was the Tamoxifen. I stopped it anyway. I didn't have to listen to them tell me, they didn't "think" that's what it was!


    Whatnow...... I read an earlier more extensive post of yours, basically talking about the same thing.... And I'm so sorry you weren't getting any help! I wrote letters, to the drug company, the FDA, and everyone I could think of.... but NOTHING, from them, ever came back. I even sent a few pills to the drug company.


    All I know is I had a TIA . A small infarct stroke of the area where the 8th cranial nerve is in the head... That is called the vestivulo-cochlear nerve, commonly called the auditory nerve...... Also I have the constant Tinnitis.


    I even started a thread, "Deafness from Tamoxifen" on here.... and there are a lot of other women who have PM'd me, who have also lost their hearing.


    The bottom line is..... On the label for Tamoxifen, it does say one of the SE's could be "stroke".... But I never paid attention to the SE's.... And a stroke is what happened in the brain stem.


    I used to post on the "Bottle O' Tamoxifen" thread.... but after losing my hearing, I sort of quit, thinking I would scare those gals half to death! I was told by one of them, that hearing loss was probably rare, and that most gals could take it, no problem.


    If I can help any of you gals..... just PM me.... I'm just sorry that there is nothing we can do, to make us any better! Hearing aids are all I can suggest. I got mine from Costco.... They do help the Tinnitis a little. But I usually have a regular "orchestra" going on in my head!


    Take good care, gals! ((((hugs))))

  • CynthiaB
    CynthiaB Member Posts: 1
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    I just joined and ran across this post. I hope some of you are still sharing on this subject. I started tamoxifen one month ago and noticed the ringing in my ears almost immediately. I thought I might just have a cold but it has persisted. I was diagnosed with LCIS and opted for the Tamoxifen. I have no family history of breast cancer but many of the other risk factors unfortunately. I'm now also having pelvic and ovarian pain and just called my doctors today. I'm really concerned about this ringing, the possible side effects of this drug and whether this is the best course of action. I'm interested in sharing with those of you who may have used waiting and testing before jumping into drugs and surgery? I'm not willing to risk my life and would consider a double mastectomy, but that wasn't the recommendation. My LCIS was small, I'm post menopausal and the other side effects have been minimal..........but uterine cancer and going deaf, not great options. If anyone is out there who might be able to share on this topic, I'd really appreciate your feedback and support. I'm feeling really stressed and uncomfortable with this drug. This option of sharing with other women is the best thing I've found so far in this mess......thanks all of you for being there and sharing.

  • aussieched
    aussieched Member Posts: 87
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    I wasn't taking Tamoxifen, but was on the Aromatase Inhibitor, Femara and got tinnitus very bad, had it for 9 months, and had to go off Femara for 2-3 periods before it cleared.


    Ched

  • Chevyboy
    Chevyboy Member Posts: 10,258
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    I just feel so bad for you gals, taking any of these drugs... We all WANT to take them, because we are told this will prevent any cancer from either coming back, or even developing a new one...


    But I quit, just beCAUSE of the hearing loss! This was over two years ago... I do have to wear the hearing aids, but still have that tinnitis in my ears.... all the time!


    Cynthia, go to the thread "Bottle O Tamoxifen".... Jo-5 knows all about that trouble you are speaking of!... I'll try and post that link!

  • Chevyboy
    Chevyboy Member Posts: 10,258
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    Okay gals.... They talk about Tamoxifen and the SE's here...


    http://community.breastcancer.org/forum/78/topic/696015?page=724#idx_21703

  • bren58
    bren58 Member Posts: 688
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    Yep add me to the list of those with tinnitus. I started Arimidex in September and the ringing stated about a month later. It took me a while to think of the connection to the drug, but I am not sure what else it could be.

  • damselflyz
    damselflyz Member Posts: 1
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    Tinnitus, high pitch incessant ringing in the ears, is effecting my abilities as a musician to teach, evaluate, and perform music. Old age hearing did not create this. It occurred with the start of tamoxifen. I have had 6 months off of tamoxifen, the ringing did not go away, and severity has increased since returning to tamoxifen. The good news: I'm in remission still. The bad news: the ringing is not expected to go away. Hang in there survivors! It's worth it!

  • moderators
    moderators Posts: 8,176
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    Hello Damselfyz,

    Sorry to hear that you have been experiencing some harsh side affects from Tamoxifen.

    This thread has unfortunetly been inactive for some time now so you might not receive responses

    You might find posting in the Bottle o' Tamoxifen thread helpful though as there is a long and active discussion going on about Tamoxifen, it's side affects and how to cope.

    Best of luck and let us know if you have any questions by sending us a private message.

    The moderators.

  • Georgia1
    Georgia1 Member Posts: 188
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    Hi all. I'm bumping up this thread since I just developed tinnitus after being on Tamoxifen for three months. I already had mild hearing loss and am post-menopausal, which are causes of tinnitus independently, but I did some research on Tamoxifen on an NIH website. Well, if you think Tamoxifen and ringing in the ears are related issues, turns out you are right. Here's a study where doctors were expecting Tamoxifen to make tinnitus better but it actually made it worse! I'm off to see an ENT on Wednesday and will post anything I find out. Ugh.


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3230769/

  • Georgia1
    Georgia1 Member Posts: 188
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    Hi all. Just reporting in that my ENT and my MO think it's unlikely the Tamoxifen is causing the tinnitus, but they support my going off Tamoxifen for a few weeks to see if it improves. So I will report back. :)

  • klvans
    klvans Member Posts: 199
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    Tinnitus can also be affected by the thyroid. Getting your thyroid checked regularly is important.

  • Georgia1
    Georgia1 Member Posts: 188
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    Thanks Kivans. I have thyroid cysts so get blood tests regularly and all is well with the thyroid function, but that's a good reminder.

    And after doing some research I found a Mayo Clinic study that suggests taking Magnesium can help, so I'm going to try that.

  • lexie2002
    lexie2002 Member Posts: 59
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    Hello Everyone. I've been dealing with on and off tinnitus for the last couple months. I am on 2 drugs and have been for awhile for heart failure that was caused by my chemo. They are Lisinopril and carvedilol which can cause tinnitus I was just told.

    My right ear clogged one day in late January. Every since then I've been on a terrible journey trying to have someone help me figure out why. 2 ENT'S, Primary care doc, PT, Dentist (2), Tmj specialist, blair upper cervical adjustments, etc. The ent's say ears are find and all the tests check out fine. SO WHY ARE MY EARS CLOGGED! I am being driven crazy by the clogging, pain, and then tinnitus on top of it.

    I've been on Arimidex I'm sure for over 6 years. (I can't remember exactly) I am desperate for answers. At the same time as my clogged ear (now both!) I started having reflux and allergy symptoms. I've been on everything and none of the meds have made any difference. I think somehow everything is related.

    Does this sound familiar to any of you ladies?

    HEALING HUGS

  • lexie2002
    lexie2002 Member Posts: 59
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    Hi Georgia

    Did going off the medication tell you anything??

    Thanks

    lexie2002

  • laurencl
    laurencl Member Posts: 203
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    Lexe2002

    I fell in September of 2020 in a stupid house accident and my ear felt immediately clogged . My hearing was effected, I was scared and went to the ER. My ear felt full and clogged and had tinnitus. Diagnosed with a head injury and followed up with ENT. ENT could find nothing (ear canal looked fine). After my third visit (when I started crying because he could not figure it out), he referred me to another ENT at the University of Pennsylvania. After a CT scan, I was diagnosed with SCDS (sub cranial dehiscence syndrome). You can google it. There is also a FB group that discusses it. My Doctor (the third ENT), diagnosed that I have thin temporal bones, a birth defect that I may never have known about but/for an accident. From what I read, many Doctors don’t know about it and many people suffer for years misdiagnosed. I have the clogged feeling that you described along with autophony (my own voice sounding loud in one ear) and the lovely pulsatile tinnitus. Having a diagnosis actually made me feel better (like I was not going crazy).I have been on anastrozole for about a year and a half. My ENT does not believe that prior chemo in 2019 or the drug are the cause. Just some food for thought.

    Lauren

  • lexie2002
    lexie2002 Member Posts: 59
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    Hi, I haven't gone off the medications. I am on 6th month with this and NO ONE can tell me what's going on. They make me feel like it's just stress and said sometimes we JUST DON'T KMOW WHAT'S WRONG. I am about to lose my mind. The chemo was easier to take then what I'm going thru right now. Thanks