Hey all,
In addition to my chronic head hissing, I've developed intermittent fullness, blockage, or muffled hearing on my left side. It's accompanied by a metallic-sounding echo when I speak, especially with frequencies near my hearing loss range.
Could this be autophony? I've also noticed that the tinnitus is louder on that side.
How are you, Deb? I really feel for you.
I have similar symptoms—now 24/7 middle ear myoclonus spasms that ring with a metallic sound, especially when I talk or eat. It also pulsates with my heartbeat, but sometimes it goes off like a machine gun. The beat can even follow my thoughts and speech. I'm very distressed.
A neurologist previously prescribed Carbamazepine. I had a slight reduction in symptoms about five months ago, but the nausea was severe. My symptoms are much worse now, and both ears feel like clashing cymbals in a band.
There was no noise trauma. I just had eight years of hissing in my left ear before everything started progressing about seventeen months ago. The first neurologist suspected typewriter tinnitus, as I had the following MRI report:
Conclusion
There is right-sided neurovascular conflict seen at the trigeminal root entry zone by the ipsilateral superior cerebellar artery.
However, the neurologist felt the finding was inconclusive and said they see that kind of thing often. My hyperacusis is now becoming extreme, and I'm pretty much housebound.
I'm going to try Carbamazepine again, and if that does not help, possibly Cyclobenzaprine. If all else fails, I'll consider Botox injections—if the Sydney ENT, Sean Flannagan, agrees. He was pretty dismissive and said he thought I was just hearing my nervous system… well, yeah!
One ENT couldn't see my eardrum moving during a spasm, so they ruled out tensor tympani involvement. However, I can clearly feel something spasming, so I assume it's the stapedius muscle.
Have you had an MRI? Did anything significant show up?
xx
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