I bet they'd find a link between low frequency tinnitus and a form of hyperacusis, if they tried a little hard. On tinnitustalk it's come up quite often, and astrid mentioned it back in the day over at chat-h. Unfortunately we have real pests that have infiltrated the system and project their shitty personal experiences of spontaneous recovery like Rob the admin of chat-h, together with the defeat from the beginning when T and H became property of audiologists just because otologists only happened to deal with ears that had hearing loss. This means that vultures like Jastreboff, Baguley and Hashir Aazh publish away to their heart's content. People like Rob probably run their own practice too, Bungler certainly does.
I think you will find this info helpful and perhaps you may have some guidance for me as well.
I have several different sounds and as well as different symptoms but in regards to TTTS, I have hyperacusis and a couple of sounds which I know for sure are related which I would like to point out.
I have an on an off low pitched "eeerrrr... errr.....errrr" sound in my left ear similar to a vibrating vent on a fridge. It's more apparent in the morning after I sleep with that ear facing down. It usually shuts off an hour or so after waking or it is significantly lower. Recently, I noticed yawning sets it off or makes it louder. This sound/symptom is certainly not ear cell or brain related but very physical and coming from the middle ear. The other sound is a higher pitched tone in my right ear set off by yawning and burping. I also occasionally
feel a light vibrating in both ears (sometimes set off a little more when talking). I have ALSO had alarming thumping in both ears usually while lying down (not frequent, perhaps a couple times a month) and get a single "click" sound in my right ear a few seconds after swallowing - this is also occasional and more so in the evening after dinner. Now, the symptoms I described above are not too bothersome (except for the hyperacusis) in comparison to erratic and violent (at times) tinnitus I have.
Other symptoms I have that I can't directly attribute TTTS (although I can't rule out either) are: constant static white noise tinnitus (bilateral), a few different pure tones also bilateral, loud tea kettle tinnitus in the middle of my head, a bouncing around electrical noise/hissing also at the top and sides of my head. Patterned fluctuating tinnitus - which makes no sense as I get a fairly comfortable day every 3 days (goes from 9 to about a 4) and reactive tinnitus which is definitely linked to the hyperacusis. I also have the following but were worse with onset and have calmed down slightly since: a pushing pulling sensation in the middle ears, moments where my hearing gets very muffled in one ear or the other and the tinnitus actually gets lower for a second. And finally, fleeting tinnitus (which used to be much worse with the onset).
Overall, the symptoms that I am very confident about the cause being TTTS are not the most bothersome, the fact that I know I must have it makes me think the other more bothersome symptoms may be related as well. What are the odds that I came down with TTTS, hyperacusis and "regular" tinnitus all at the same time. Makes me think my situation is mainly middle ear related and the muscles are spasming and pulling causing disrupted signaling hence tinnitus and even "brain" tinnitus.
Maybe.
Currently, I have not found a doctor to perform a proper evaluation for myoclonus but I have considered surgery. Drawbacks would of course be the undesired side effects you were also concerned about. The biggest concern for me would be an increase of tinnitus (I have read that happening with stapedectomy to some people on this forum, but I'm not sure if it is less likely to happen just by cutting the tenor tympani).
@japongus Curious to hear your comments about this as I think this is the type of info you were looking for in terms of detailed symptom descriptions.
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