Anastrazole & muscular tinnitus

Options
Toad
Toad Member Posts: 54

I've been on Anastrazole since around August (about 7 months).

Side effectis I could tolerate started immediately (restless leg, calf muscle cramps (occasionally a 10 on a scale of 1-10, but if I am attentive they are brief and I can stop them at a 6 or so), bursitis, and hot flashes).

Now I've developed a new one that is driving me nuts. Just curious to know if anyone else has experienced the same thing.

About 3 weeks ago I developed a muscle spasm in my ear. It goes by the informal name of muscular tinnitus - a repetitive fluttering of muscles in my left ear that have both a sensation and a low-volume muffled sound (most descriptions I've seen use the word "clicking," but mine is too muffled to be described as clicking). I've been checked by an ENT - so far no hearing loss - but they ran me in immediately for a hearing test because Anastrazole is an ototoxin.

The fluttering happens all day long - the day I tracked it over about a 12 hours period, it happened on average every 11 minutes (lasting from 5-20 seconds each time).

Any one else have this symptom - or collection of symptoms? If so - did you outlast it or have to switch meds?

I'm not noticing the fluttring as much - but of all of the side effects so far, it is the one most likely to prompt a switch in meds.

Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2017

    Yes I have ringing in my ear and some arthritis in my neck and my eye became very dry all on the right side.

    The dry eye is much better, still have the ear ringing and neck issues. I have been off anastrozole and exemestane. I know the anastrozole caused my ear ringing.

  • Toad
    Toad Member Posts: 54
    edited March 2017

    Thanks - but that's a different issue than I'm asking about (which is why I started a new thread, rather than diving into the regular tinnitus threads).

    I've had regular old tinnitus for as long as I can remember. It's a bit worse. Before anastrazole it was limited to my right ear - now it is in my left as well part of the time - but it is connectd to hearing loss in the frequency range of the tinnitus so since the left ear has now caught up to the right ear as to hearing loss, it may beunconnected to the anastrazole.

    This is completely different - it is much more sensation than sound (although there is a bit of sound with it). If you ever get a muscle twitch - that's what this is like insice the ear, but pretty rapid, all day long, about every 11-12 minutes.

    Apparently it is a rare form of tinnitus - and side from sharing the same label (tinnitus) - it doesn't have much in common with the ringing-in-the-ears tinnitus.

    I've searched (discussion board, google, pub med, side effects database), and I haven't found anyone else who has it in connection with anastrozole. The CNP who evaluated me at the ENT doc did not seem surprised at all, though, and it makes perfect sence since (generally) anastrazole is doing a number on my nerves/muscles. So I'm surprised I haven't run across fellow sufferers.


  • Madicyn
    Madicyn Member Posts: 20
    edited March 2017

    I have been on Anastrozole for 6 years. I few years ago, I developed what you describe. However, for me it is, thankfully, more positional. I get it in my right ear when I'm lying down on my right side. I have never heard of muscular tinnitus before--even mentioned it to an ENT and got no hint (or concern) about what it might be. It is indeed a very annoying sound/sensation. And yes, my regular tinnitus seems to be worse since starting anastrozole, but maybe that's due to aging. Guess I'll never know.

  • Toad
    Toad Member Posts: 54
    edited March 2017

    I went in with a self-diagnosis - and I have enough of a history of being pretty accurate that they take me seriously when I walk in and describe what's going on - with or without a suggestion of what I think it is. They were concerned about potential hearing loss (because anastrazole is an ototoxin) - but no signs yet.

    The ENT put me no magnesium and, if it isn't gone in 3 weeks, they want to add calcium channel blockers. Both address muscle spasms.

    I've been experimenting with position, to see if it makes a difference in triggering it or relieving it. So far, no luck. Tensing up (to move, for example) and spontaneous yawns seem to trigger it. But it also starts randomly (since it's happening every 11-12 minutes, that's not too surprising).

    Is yours still going on?

  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2017

    Toad, mine is a vibration don't know if it is similar but I do know it was from medication.

  • doxie
    doxie Member Posts: 1,455
    edited March 2017

    Good they suggested magnesium. At the least it should help your muscle cramps. The small increase of magnesium that came with a change in a calcium supplement eliminated my leg cramps completely and I'd had them off and on for years. Worse on AIs though. Maybe it will help your muscle tinnitus.

  • Toad
    Toad Member Posts: 54
    edited March 2017

    @Meow13 There is a physical sensation to it? (I have classic tinnitus - whicn is generally described by ringing - and I describe mine that way - and it is unrelated to the muscular tinnitus).

    It would not have occurred to me to refer to the muscle spasm that anastrazole has caused as "ringing," - that's why I assumed you were talking about classic tinnitus when you said ringing.

  • Toad
    Toad Member Posts: 54
    edited March 2017

    I haven't had muscle cramps before - they are new. But I've had restless leg for years - it had a characteristic time (ending ~2 AM), and was mostly gone the last few years. It started instantaneously when I started anastrazole - at a different (more intolerable) time (starting ~5:30 AM)

  • Bagsharon
    Bagsharon Member Posts: 200
    edited March 2017

    I've been experiencing a weird sensation in my right ear since I started Anastrazole three months ago. It feels like tickling sensation, like a bug is crawling around in my ear. I thought maybe it was the hair growing back after chemo but now you have me thinking it is something else.

  • katcar0001
    katcar0001 Member Posts: 621
    edited March 2017

    Toad - I have fluttering or twitching in my ear (might be TTTS?), and I have eustachian tube dysfunction. I don't have the fluttering every day, but I do get it several times a week, and it can last for hours. It's really annoying. I also have tinnitus. The fluttering has gotten much worse since the tinnitus started in Oct. I have been taking magnesium and steroid nasal inhalers... nothing I have taken so far has worked. It could have started as a result of Tamoxifen (there are some reports of it being ototoxic), menopause iteself, or a combination of menopause + hormonal therapy drugs (huge drop in estrogen).

    Edited to add that I have never heard of muscular tinnitus, and I am going to look that up!

  • katcar0001
    katcar0001 Member Posts: 621
    edited March 2017

    This article describes TTTS (Tensor Tympani Syndrome) and MEM (Middle Ear Myoclonus) along with some treatment options. I do find that Valium affects my tinnitus and fluttering--if I take a bigger dose, I get total silence for a day or two. But I don't view it as a long term solution due to addiction concerns.

    https://www.tinnitusformula.com/library/understanding-how-middle-ear-myoclonus-causes-tinnitus/

  • Toad
    Toad Member Posts: 54
    edited March 2017

    katcar0001 I got to muscular tinnitus by looking up ear fluttering - not really expecting to find anything, but what popped up was muscular tinnitus. The ENT didn't pin down whether it was the tensor tympani muscle or the stapedius muscle that is spasming (they tried to catch it - but the device they used changed the pressure in the ear canal and calmed it down during the test). I've seen both of the options you've named connected to what I'm experiencing

    We'll see how I get along with the magnesium. It isn't annoying enough (yet) to want to try valium - and if it gets that annoying, I'll try a different AI before I try valium. I need my brain to be sharp.

    Bagsharon - I don't think I'd describe it as tickling, but there are two muscles that can be involved. Different muscles might feel different.

    I'm just excited to know I'm not the only one experiencing this - since couldn't find any reports in the side effects databases.

Categories