Would It Be Helpful to Have a More Detailed Description of the Ringing in the Ears?

I am always surprised how little precise the description of tinnitus sounds is.

Could it not be helpful to refine the description of the sounds?

What do you think?

 

One way would be to have digital duplication of sounds and sound classes banked as part of a central reference library, and assign a specific terminology set to each class of sound. The thing you probably can't capture though is the creeping sensation of tinnitus that accompanies the sound.

 

Obiously not an interesting idea...

 

I think the description is not very precise because there are so many personal ways and various adjectives to describe tinnitus.

What one person describes as cicadas another person may describe as TV static. And I am not entirely sure how similar descriptions would help advance any future treatment options.

 

Cicadas are a good example.
While everyone can imagine something under a sine tone, or hissing, - what are cicadas? I, for example, have rhythmic (pulse-synchronous?) electric discharges, which are rather gentle but annoying in quiet surroundings. -> Cicadas??

 

Right. Cicadas — or locust — is one of the best descriptions for mine. They make a very high pitch sound, or at least the variety in North America do.

Hissing is not very descriptive to me, since different animals and devices can make different types of hisses. For example, the hiss of a cat is very different from the hiss of an old radiator.

 

We talked about this on another of Tinniger's threads. A standardized descriptive language would be helpful, I think, but finding that language without introducing biases would be a very complex process.

 

With hissing, I think of the sound that snakes make.....

 

Nobody seems to be interested in a differentiated observation of tinnitus.
How can you ever get therapy if you're not interested in a diagnosis?
Of course, pulsatile tinnitus, for example, often has completely different causes and treatment options than blast trauma. Tinnitus after a noisy trauma and after a whiplash injury may also differ.
...

 

People with far greater resources available to them than we have aren't even interested.

 

I'm really shocked at how low the diagnostic interest in tinnitus is. Therapies are tried out without diagnosing exactly.
If this were the case with headaches, it would be a catastrophe...
Therapeutic nihilism ("You have to live with it") also seems to have spread to diagnostic nihilism...

 

A lot of medicine is based on the "what the hell. it works...I think" principle.

 

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.

 

I think the problem boils down to how can we measure tinnitus and how can we measure it in a standard way?

Physical entities such as blood pressure, urine flow, blood cell count, electrical brain waves are easy to measure (directly) and have standard descriptors. Tinnitus is so, very subjective and (at present) is measured by QoL or severity indices and pitch matching (which has limitations in itself)

It may be possible to come up with a standard grading (of severity) scale such as with pain, levels of paralyses etc but maybe one day, it may happen (if the medical community show a common interest)

 

Anybody who haven't seen this should check it out: https://www.tinnitustalk.com/threads/tinnitus-sound-survey-idea.26758/

The lack of proper sound banks is due to...well...lack of tinnitus treatments in general. We still have to do everything by ourselves. I'd love to do it myself, but ironically due to tinnitus, some days I have less energy than others.

 

ONE TREATMENT FITS ALL

 

@Cal18

The colourful variety of your symptoms reveals the whole tragedy of our disease, which often leads to acoustic self-observation.

Ultimately, we need a complex of symptoms that can be traced back to one cause.

For example, I am not really sure whether my "somatic" symptoms, i.e. the fact that it also beeps when the jaw is pushed forward, were not always there and only became apparent with the tinnitus observation.

 

In regards to inner ear issues (myoclonus/TTTS) this paper was interesting in terms of diagnostics. https://www.ncbi.nlm.nih.gov/pubmed/24232057

@Tinniger We do have to do everything ourselves including seeking out the right kind of help. The only urgency that exists for this condition is our own. I would love to find someone to do the same evaluation as described in the paper above (unfortunately, I think they are in Japan). I have however contacted researchers and guess what, a lot of them respond - more than you would think... Figuring out the right questions to ask is the hard part.

 

Yes I'm also stunned by the lax attitudes about tinnitus causes, as all of it seems to go into one bag that fits all.

For example the tinnitus that is caused by poor circulation needs different approach as different things will work...Ginkgo for example has potential to help the poor circulation induced tinnitus, but will do nothing for someone who's circulation is normal.

I'm pretty sure there are more examples of this put there but I feel that we very much need to differentiate and try to group the T's that are induced by a specific cause into their own groups, as there is a good chance those within that specific group will respond to any potential treatment in a similar way, since they share the same cause for their T...

 

Sounds can be very physical and yet not come from the middle ear. I want to make it very clear that I don't mean that all physical feelings are by definition from the middle ear. It's just a theory, which was debated about in chat-h and the myoclonus proboards a decade or more ago. For some tenotomy went well, joeM and lib and others, and for others it went badly, astrid. There could be different types of thumps, and some thumps could be coming from deeper inside the audiological system, or it could be involving more parts of the middle ear apart from merely two muscles. Or a type of synaesthesia could be happening, like in this gif btw the thump many of you feel with that jumping electrical post is pretty similar to what I have to put up with all the time with every single sound.

I think different types of tinnitus could point to different types of hyperacusis and to different types of TTTS, if better research was done, and more precise questions were asked from patients. My tinnitus is fixed for decades like everything else, high and low pitched, and resonates or moves or thumps with every new sound, making it also a type of mainly but not exclusively, startle hyperacusis and possibly a form of TTTS or eustachian tube disorder.