Really odd question about possible Arimidex SE

AmyIsStrong

Well, ladies - if you are willing to read my crazy tale, I thank you in advance.

So for about 25 years, I have had a problem wherein if I were in a noisy, crowded, loud place, and trying to have a conversation (imagine a cocktail party where you are conversing with someone), after a while (60 min or so?) I would experience a very strange sensation (like a roller coaster drop in my stomach) and end up getting a very motion-sickness like reaction with nausea and vomiting. VERY unpleasant.

I managed by avoiding those situations as much as possible, and in recent years, have found that dramamine taken ahead of time eliminates the problem.

I saw a doc years ago (neurologist) who said it was a weird kind of migraine. I wasn't sure, but...whatever. I just lived with it.

So all good - right? Well....I had bc 5 years ago, was on tamox 3 years, had spotting, and ended up with a hysterectomy and now on Arimidex for a year.

Over the past year or so, I have noticed the problem getting worse. I started having it happen when driving in the car talking on the speaker phone. Or other situations that I could not pre-medicate with dramamine for. So I finally went back to the neurologist and had a lot more info to give him (having observed this problem for a lot longer now). He thought it was a weird thing (very rare) where the temporal bone in your ear is thinning and the sounds go into your brain improperly and your brain interprets sound as motion (the best way I can explain it). And that causes the motion sickness reaction. I also have noticed that I get it when I talk to my dad who is hard of hearing, so I have to strain to speak louder (Same as on the speaker phone in the car)
I started to realize that it was MY OWN VOICE that was making me sick, not necessarily the outside noise alone. The neurologist supported this (it is called autophony, fyi).

So I had a CT scan and sure enough, there is thinning of the temporal bones which is causing the problem. Now OBVIOUSLY this was here long before arimidex - it has been easily 20-25 years. But it has suddenly gotten MUCH worse.
And so...my question is - could the arimidex be responsible for accelerated bone thinning in my ear? I never thought of it before, but it recently occurred to me when I was trying to figure out 'why now?'

I am seeing a neuro-ENT guy in a few weeks to see what can be done - there is apparently surgery but I am not sure I am a candidate, and not sure I would do it anyway. Drilling into my HEAD? Um........ I don't know.

But do you think there could be a link to arimidex? Do I remember right that it can cause bone thinning (as in osteoporosis)? My bone density is fine, but could this be a factor in my HEAD?

THANK YOU for reading this. As you can imagine, this is not a fun problem to have.

Any feedback is greatly appreciated.

Amy

Lily55

Yes all the anti oestrogen or oestrogen blocking medications can do this, but there are apparently medications you can take to help slow or prevent bone thinning..........I would go back to Oncologist and ask for these in the meantime

SpecialK

amy - Arimidex can certainly cause bone thinning.  I had a hyst/ooph nine years prior to being diagnosed with BC.  I am slight build, Caucasian - so already had risk factors for the development of osteoporosis.  After the hyst/ooph I developed osteopenia, but it was stable for the nine years, until chemo and six months of Femara.  I slipped right to the brink of osteoporosis in that short time period - less than a year - so it was quite accelerated.  I do receive Prolia injections twice a year and my bone density has reversed back to a normal reading.  It would stand to reason that the AI could have worsened your existing issue - as it did mine - but if your other bones are unaffected I wonder if there is a propensity with this issue specifically.  Or is this a coincidence?  Since bone strengthening drugs have side effects I would wait until after your consult with the neuro-ENT.  Osteonecrosis of the jaw is one of the most dangerous side effects of bone strengthening drugs and the jaw and the ear are pretty darn close to each other, so I would want the opinion of the specialist first.