- Apr 28, 2019
- 5,452
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- Multi-factorial
Hi y'all. I spend entirely too much time on this forum, but it troubles me that, in all my reading, i have yet to find someone with my flavor of hearing issues.
Background:
I had sudden bilateral and symmetrical hearing loss about 10 months ago due to high dose (and prolonged) Azithromycin for suspected inner ear infection after a series of vertigo events (turns out that was the wrong diagnosis as was a Meniere's diagnosis later). I had very mild tinnitus for about a month leading up to it but was told that noise was real and "in the house" by my ex husband who lied about it because he didn't want to deal with bringing me back to the doctor (I was mostly bedridden with severe vertigo at the time).
As an aside, the vertigo turned out to be likely very severe vestibular migraines secondary to hormonal shifts from fertility drugs so it is unrelated to my hearing issues which started with the antibiotic.
Anyway, for the first few weeks to few months after the sudden hearing loss I had moderately severe hyperacusis, loud tinnitus (7-8/10 very often) and moderately severe reactive tinnitus to certain stimuli. The hyperacusis is 90% plus gone and the reactive tinnitus is mostly gone (it was totally gone at one point but restarted after I tried Tinnitus Mix). My tinnitus is currently a 4/10 mostly now with some louder spikes here and there. I have little to no trouble with conversation (if the person is facing me, especially) but I need captions for tv or I miss many words.
My audiogram is normal to 8000 Hz but I have a 55-60 dB loss at around 12000 Hz (bilaterally). Somehow I also completely passed the audiologist' speech in noise test but I feel like I don't hear well in noise at all.
BUT the thing that bothers me the most of all is that music is gone for me. When i say "gone" i mean completely--it's unlistenable. I don't hear my tinnitus when music is playing so I don't feel that's the problem for me.
Songs are missing entire instruments (like "Another One Bites the Dust" might be missing the baseline but if the instrument is isolated, I hear it okay. Also what I do hear sounds tinny and like garbage. I have tried 1000s if not 10s of 1000s of songs. The only thing that sounds normal is 8 bit video game music. This has ruined music, tv, movies for me. It's *miserable* and i have yet to talk to anyone who has similar hearing. It's an absolutely devastating loss to me.
I'm trying to localize the lesion(s) to figure out which experimental drug to hope for. FX-322? PIPE-505? Yet to be discovered KV 3.1 channel opener?
Is this cochlea? Brainstem? Both. Apparently aminoglycosides can be ototoxic to inner ear *and* brainstem. I have read that macrolides can too in high doses (my doctor put me on an irresponsible dose).
Even if no one has the same issue, I would appreciate any help trying to figure this out. Doctors are stumped and I'm just trying to hold onto hope.
Background:
I had sudden bilateral and symmetrical hearing loss about 10 months ago due to high dose (and prolonged) Azithromycin for suspected inner ear infection after a series of vertigo events (turns out that was the wrong diagnosis as was a Meniere's diagnosis later). I had very mild tinnitus for about a month leading up to it but was told that noise was real and "in the house" by my ex husband who lied about it because he didn't want to deal with bringing me back to the doctor (I was mostly bedridden with severe vertigo at the time).
As an aside, the vertigo turned out to be likely very severe vestibular migraines secondary to hormonal shifts from fertility drugs so it is unrelated to my hearing issues which started with the antibiotic.
Anyway, for the first few weeks to few months after the sudden hearing loss I had moderately severe hyperacusis, loud tinnitus (7-8/10 very often) and moderately severe reactive tinnitus to certain stimuli. The hyperacusis is 90% plus gone and the reactive tinnitus is mostly gone (it was totally gone at one point but restarted after I tried Tinnitus Mix). My tinnitus is currently a 4/10 mostly now with some louder spikes here and there. I have little to no trouble with conversation (if the person is facing me, especially) but I need captions for tv or I miss many words.
My audiogram is normal to 8000 Hz but I have a 55-60 dB loss at around 12000 Hz (bilaterally). Somehow I also completely passed the audiologist' speech in noise test but I feel like I don't hear well in noise at all.
BUT the thing that bothers me the most of all is that music is gone for me. When i say "gone" i mean completely--it's unlistenable. I don't hear my tinnitus when music is playing so I don't feel that's the problem for me.
Songs are missing entire instruments (like "Another One Bites the Dust" might be missing the baseline but if the instrument is isolated, I hear it okay. Also what I do hear sounds tinny and like garbage. I have tried 1000s if not 10s of 1000s of songs. The only thing that sounds normal is 8 bit video game music. This has ruined music, tv, movies for me. It's *miserable* and i have yet to talk to anyone who has similar hearing. It's an absolutely devastating loss to me.
I'm trying to localize the lesion(s) to figure out which experimental drug to hope for. FX-322? PIPE-505? Yet to be discovered KV 3.1 channel opener?
Is this cochlea? Brainstem? Both. Apparently aminoglycosides can be ototoxic to inner ear *and* brainstem. I have read that macrolides can too in high doses (my doctor put me on an irresponsible dose).
Even if no one has the same issue, I would appreciate any help trying to figure this out. Doctors are stumped and I'm just trying to hold onto hope.