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Topic: Tamoxifen and hearing loss with tinnitus.

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer —

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Posted on: May 19, 2013 10:14PM

1-vangogh-1 wrote:

I had a sudden sensori-neural hearing loss on 2/6/13, and it has gotten worse with time instead of better.  My neuro-ent told me if it did not come back in 4 months, it won't come back.  I have had CONSTANT tinnitus since the hearing loss and I have lost at least 50% of my hearing in the left ear only.  HAS ANYONE ELSE HAD THIS PROBLEM WHILE BEING ON TAMOXIFEN??  I was only on it for 6 months, 20 mg. daily.  (Thank you, Brendatrue for your encouraging messages).  I welcome and thank you for any encouraging news.

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Sep 29, 2013 06:47PM wicasa wrote:

Hi. I am new to this forum so I hope i am doing this right. I was searching the web and came upon this post. I too have recently been diagnosed  with sensori-neural hearing loss. It was recommended that I would benefit from hearing aids. My tinnitus started about a year and a half ago and has progressively gotten worse. I am 4 years 8 months into the Tamoxifen 20 MG QD but it is not listed as a side effect. Did not connect the possibility that it could be Tamoxifen related until we started to rule out possible causes. I have tolerated all the other side effects,early menopause, hot flashes , weight gain, leg cramps (OMG the leg cramps) joint pain , insomnia..ect... I have tolerated all this in silence but now I am miffed! Insurance will not pay for hearing aids unless It can be proven it was an Oto toxic drug that caused the hearing loss.Was Soooo glad to see this post and relieved to see I am not crazy with the notion that the Tamoxifen could be and probably is the culprit. Has any one else had their hearing return after stopping the med and will this ringing ever stop? I am so close to completing my 5 years. Well if nothing else thanks for listening; if you can hear me above the constant ringing....

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Sep 29, 2013 07:20PM shoppygirl wrote:

About a week after I started Tamoxafin I developed tinnitus. It was really bad at first but seems to slowly be getting less frequent. I thought it was a late side effect of the chemo. I don't believe that I have had any hearing loss yet, just this very annoying ringing!

Less than 2mm of cancer in the sentinel lymph node. Dx 1/27/2013, IDC, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+, HER2- Surgery 2/28/2013 Mastectomy: Left, Right Chemotherapy 4/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 8/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 8/20/2013 Breast, Lymph nodes Surgery 1/30/2014 Prophylactic ovary removal Surgery 9/26/2015 Reconstruction (left): Saline implant, Tissue expander placement; Reconstruction (right): Saline implant, Tissue expander placement Hormonal Therapy 10/16/2015 Femara (letrozole)
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Oct 10, 2013 05:21AM whatnow wrote:

VESTIBULAR NERVE DAMAGE. This is a long story (and I hope it is far from over because I am worse every day), but I want to put this information out wherever I can because I DO believe these meds are damaging patients in ways that has not been acknowledged and we should have the right to know this can happen before we decide to be treated.

I took 3 years of Tamoxifen (2006-2009) then 2 years of Aromasin. The Tamoxifen caused a lot of side effects, and I was SO happy to see it end. I am worried that the thing that looked like a lifesaver might have become an anchor instead. I have developed a LOT of problems of the 5 years of treatment (I think both are ototoxic). I doubt I could ever prove what did what. But my symptoms are becoming so severe that I am closing my business as I simply cannot function at this level anymore. Here is my recap:

DX age 46 (now 54) 1 chemo treatment (I won't go into the details as to all the reasons why).

I now have vestibular nerve damage on both sides (confirmed dx by a neuologist). They say I have hearing LOSS, but you couldn't prove that by me...I am actually UBER sensitive to sounds. I jump out of my chair at certain sounds now; I am as jumpy as a cat. My problems started with tinnitus. I've known it was in both ears but I am now pretty sure it is both. It is 24/7 and like "cicadas." THAT I could handle. But, at the same time I started getting what I am assuming is "hyperacusis" (if I'm spelling that correctly), I also began to have episodes (events, spells, seizures) that I/we are calling migraines WITH AURA. Bear with me, this all ties back in. I have been to 5 neurologists including opthomologist and migraine specialists (both were neurologist). I am just on a merry go round. No one knows what to do and passes me off. Three of the 5 have said "I don't know what else you want me to do for you," and prescribed anti depressants! I was a good patient, I tried everything, but nothing has worked and I am CONSIDERABLY worse off than 2 years ago when I first went to my GP.

These "migraines" are not what most people think when they hear the word. I mention them because there is supposedly such a thing as a "vestibular migraine." In other words, it seems plausible that ALL my symptoms are being caused by the nerve damage (I have damage on the upper nerve on ene side and lower on the other).

Now let me explain what has come SINCE the tinnitus. I'd be SO HAPPY if that was my only symptom these days. I am symptomatic all my waking hours, with extreme fluctuation in the severity/intensity and frequency of the spikes. The very worst symptom is a loss of cognition during what I assume are migraine auras. I cannot read/write, do not recognize my daughters name. These used to happen very infreuently; I am now at SOME level of confusion most of the time, with moderate spikes a few times a day. I also have visual disturbances...another normal "aura" symptom. They vary a LOT from just little sparks many times per day, up to typical migraine auras where part of my field of vision turns into a picasso painting, or I see shimmering silver/prism areas, etc. Things DISAPPEAR before my eyes (I can hold my hand in certain positions and it just brain is writing over it). What I am calling "hypercusis" (sp?) is only from my being Dr Google. I had a HORRIBLE time taking the hearing test. I had to hang onto the table like I was being murdered. It does not is just completely intolerable. When I hear dishes or pans I want to SCREAM. So so so many sounds are a problem. I have two people at my office (I'm closing my business this week) who like to "say hi" by snapping their fingers as they walk by, or hitting their ring on my doorjamb. I nearly hit the ceiling. This happens about 30-40 times per day. I initially went to my GP saying "I don't know what is wrong, I'm as nervous as can be and I don't know why! I feel like adrenalin is shooting into me for no reason. Like ALL the doctors I've been to...we've gotten nowhere (except for getting a diagnosis; that's good, but nothing has helped). My migraine espisodes are always different. They can involve the traditional headache or not, they often involve a numb mouth/tongue. But most days I have SOME level of symptoms. I know when I get up how the day is going because my vision is worse in one eye. So many things go on at once, it is just hard to describe. I have tried vestibular rehabilitive physical therapy, a horrible Alzheimer's medication that made me think I was dying (no joke), two different high blood pressure meds, and 2-3 anti depressants, plus a diet. I tried each thing for 1-3 months...nothing made any change whatsoever. This began with ONE attack, and it took 6 months before the next one hit. They increased until I am now having about 5 spikes per day. The headaches are currently quite tolerable (they didn't used to be)..but the cognitive loss stops my life. It is like I am having a stroke, sometimes I cannot even speak properly. The problem with sounds CAN also be debillitating because I cannot focus, function, think, etc.

But...right now, I don't even have an appointment with a doctor. No one seems to know what to do next? How can one get treatment if there is none? I am beside myself, wondering how I will support myself in future. I don't know who will hire me. We REALLY need to get this Tamoxifen message out there so it can be stopped and/or more studies can be done.
Age 46 at dx. Initial finding 1.8 cm. MRI found a 2nd, smaller primary tumor in same breast the day before mastectomy ("close to, but not touching chest wall"). Stopped chemo after 1 treatment due to unease with risk:benefit ratio. Dx 4/1/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 4/30/2005 Mastectomy: Right Chemotherapy 6/30/2005 AC + T (Taxol) Hormonal Therapy 12/31/2005 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 12/31/2007 Aromasin (exemestane)
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Dec 4, 2013 08:27PM CentralCoast wrote:

Ask about connective tissue-no estrogen no connective tissue "grease" It affects knees hips etc.   Connective tissue is in our bodies everywhere and estrogen is our wd40....without it   ????Possibilities  I am so sorry

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Jun 19, 2014 06:03PM Sue2009 wrote:

"what now" I read your entire post. I started experiencing tinnitus in my right ear only last year. My doctor tried to blame it on chemo, but I don't buy it, I had chemo 4 yrs ago. They offered to send me to ENT, but I have no faith in them being able to help. At first it was making me nutty, but now I have gotten used to it. I took arimidex , so I can't blame it on tamoxifen. I know I have diminished hearing, but I get jumping w/ loud noises also, esp when some one comes in my room w/out knocking, I just about jump out of my bed.

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Apr 6, 2015 09:27PM 1-vangogh-1 wrote:

I haven't posted for a long time, but have read all of these posts. Thank you, everyone for keeping the dialogue going.  My original episode of the sudden sensori-neural hearing loss and severe tinnitus was 2/6/13.  It is now 4/6/15, my hearing loss has stabilized (at least, a 70% loss, left ear only) and the tinnitus has never stopped.  It is 24/7 and wanes and waxes in volume.  I compare it to the noise that one might hear if listening to a flourescent light that has a loud hum.  I also get what is labeled "typewriter tinnitus" daily for about 5 seconds.  I went off the tamoxifen on 2/13/13, and am taking my chances.  I wish there was more hard data on this horrible med and proof that it can cause oto-toxicity.  I have not found any studies regarding this.  The 8th cranial nerve damage is permanent (Vestibular-cochlear nerve), and I have a mild balance disorder from it with nystagmus( mild) as well.  I'm very interested to hear from anyone who has had a similar problem and if hearing aids have helped to mask the "ringing" (tinnitus), and have helped the hearing in group conversations.  A friend uses a Widex sp? brand.  Does anyone have an aid that they really like.  The new digital hearing aids are suppose to be so much more improved.  Thanks for posting everyone.

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Apr 6, 2015 09:35PM Meow13 wrote:

I got tinnitus about 1 year on anastrozole it hasn't changed since taking exemestane.

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Jul 8, 2015 08:11AM - edited Jul 8, 2015 08:32AM by whatnow

Vangogh: I also have the balance disorder, vestibular nerve damage (both sides), and nystagmus. I'm desperate for a doctor that might know how to help--don't suppose you're in the Midwest? I do have hearing loss, but it is mild and above the pitch of human speech so it is not a bother. I also experience "hyperacussis," which Sue mentioned. I am particularly susceptible to a certain pitch of sound. When someone sneezes I about jump out of my seat. The sound of pots and pans, or dishes sends me into a tizzy. I can't stand to put away my dishes. The dizziness can be pretty debilitating. Moving my head and/or eyes has gotten worse and worse over the years. I acclimated to it and can drive better now, but I can't bed over or lift things without extreme problems--daily life is difficult. But all these things are only minor nuisances when compared to the daily PAIN that has made me feel completely debilitated. It is constant and extreme and I have not found anyone who can help with that.

So I thought I'd update my current status. I developed tinnitus during Tamoxifen or Aromasin treatment (so it could have been either, or the chemo --see below), and I am now 10 years post cancer diagnosis and about 5 years after having ANY kind of treatment. I still have 24/7 tinnitus-high pitched cicada type sound. I was only stage 1, so I quit chemo after one treatment (at the time, and with the oncologist I was assigned, I wasn't given a choice whether or not I had to take it) because I did not like the risk:benefit (for ME). I switched oncologists and she told me the anti-hormonal meds were far more important for someone with my diagnosis, so I blindly jumped into the treatment. I wish I had spent more time thinking about long term effects. I do not hesitate to say that I am SO much worse today, on a daily basis, than I feel I would have been if I had opted for surgery alone. Quality of life is horrid. I have been unable to work, and had to close a successful business I had for 20 years. I discovered a very low vitamin D level and began taking supplements. This oddly seemed to nearly eliminate my migraine "aura" (visual disturbances). My thought is that our body uses D like a hormone, and it must help settle my odd hormone status (taking the pills, then going through menopause, etc), and mitigate some of the migraine symptoms. I have a LONG story as to why I know migraines must be hormone related--I'll spare you. But taking those anti-hormone meds FRIED my system. But, even though I now have very few severe "auras," (I had them to the point I could not understand written words, didn't recognize my daughter's name, etc.), I do sill have multiple (or one constant) debilitating headaches each and every day, no medicines help them (I've been to SO many doctors and tried SO many things), and they are EVERY SINGLE DAY.

I have taken some college courses to try and retrain myself so I can get a job, now that my business is gone. I can take the courses because they are distance-education, so I can work when I AM ABLE to work. But I hold little hope for that. I've tried a few temporary, daily type jobs, but I fail miserably and am in pain all the time. I have no job, am running out of savings, in extreme pain every day, and don't know what to do at this point. I've now done the VRT therapy twice (to try and help the dizziness). The second therapist said the first didn't know what they were doing (typical answer). I've even gone to a chiropractor, an ortho, multiple neurologists (some of whom specialize in balance and migraines), my GP of course - and no one knows what to do. I have two MRIs about three years ago, both were negative. But my head is about to explode every day and I'm at my wits end. I tried several migraine meds--no help. One thing that does help if I only take it once in awhile is DECONGESTANTS!!! This makes NO sense to me, but I do know they constrict blood vessels. Perhaps they just target the ones that are involved in my pain. If I take one of these, and about 4 extra-strength Tylenol, I can work for a few hours. But surely there is some way to find out why all my cranial nerves seem to be causing me so much pain/problem. I know I have vestibular nerve problems, and my migraine "auras" can involve a numb tongue, and my pain is in the occipital nerve area of the top/back of my head, and I get nauseated (vagus). It's like there is a swelling affecting several of the nerves. I assume that is the vasodilation.

I am mean and grumpy all the time, and no one wants to be around me because I am always in pain and grumbling or sleeping with ice packs. But I don't know how to fix it. I never used to be this way and it's ruining my life. Surely someone knows that these meds caused this damage because it couldn't be anything else. Is there no one who knows if anything can be done to return to a life without constant pain? Honestly, it was NOT worth it.

From : Anthracycline chemotherapy medicines such as Adriamycin (chemical name: doxorubicin) can damage the part of the inner ear (vestibular system) that helps you maintain balance (this damage is called vestibular ototoxicity).

Age 46 at dx. Initial finding 1.8 cm. MRI found a 2nd, smaller primary tumor in same breast the day before mastectomy ("close to, but not touching chest wall"). Stopped chemo after 1 treatment due to unease with risk:benefit ratio. Dx 4/1/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 4/30/2005 Mastectomy: Right Chemotherapy 6/30/2005 AC + T (Taxol) Hormonal Therapy 12/31/2005 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 12/31/2007 Aromasin (exemestane)
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Oct 9, 2015 06:11PM Orlandoan wrote:

I have been taking Tamoxifen for the past year and have noticed ringing in my ears for the past two months. I don't know for certain why it started all at once but it's been pretty steady since it began.

Dx 10/6/2013, Right, Stage IV, Grade 3, 2/2 nodes, ER+
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Oct 9, 2015 06:58PM tangandchris wrote:

I had ear ringing too and I know it was tamoxifen. Just one of the reasons I stopped taking it.

My reconstruction with TE's failed...had them removed because of infection. I am still unsure of if or when I will try again. Dx 10/24/2013, IDC, 2cm, Stage IIIA, Grade 2, 6/25 nodes, ER+/PR+, HER2- Surgery 11/22/2013 Lymph node removal: Left; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 2/12/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 10/2020, Stage IV, metastasized to bone/other, ER+/PR-, HER2-
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Dec 1, 2015 09:29AM alogsdon wrote:

I too have hearing loss and tinnitus and believe it is caused by Tamoxifen. Please report your issues to, or by calling 1-800-FDA-1088.

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