Tinnitus Hub / Talk Survey Results

According to current standards, who knows what kind of damage they're not detecting with their tests.

Just to make it clear that I made this observation from my personal experience with the audiologist,
they would've settled with the results from the test up to 8 kHz and I had to make a separate request
to test for the higher frequencies which shows me having trouble hearing beyond 14 kHz.

So is their testing methodology even valid? That is my overall feelings towards the existing literature.
Well you can put it the other side, I know several people with severe hearing loss and absolutely no tinnitus, so there must be something else that is the reason why some people develop it and other not, I think that this survey is great and answers some of the questions I had.
 
I found that pretty interesting too, it is self reported so I'm not sure how aware people are of having any hearing loss - especially if it creeps up on you.

In hindsight it would have been a good idea to ask how many had their hearing checked. This wouldn't pick up the hearing loss above 8 kHz for the majority though due to the test limitations.

Hi Steve, thanks for the hard work on this!

Some seem to think that tinnitus is always because of some sort of hearing loss, and that hidden hearing loss can't be detected in hearing tests, what's your opinion on this? Seems that it's very hard to say where tinnitus comes from.

Yesterday I met a guy who had tinnitus from a heart attack, which was a traumatic event for him, he has some kind of hearing loss, but he never had tinnitus before, it's so extremely complex.
 
Some seem to think that tinnitus is always because of some sort of hearing loss, and that hidden hearing loss can't be detected in hearing tests, what's your opinion on this? Seems that it's very hard to say where tinnitus comes from.
It's easy to argue that. After all we begin to lose hearing very early in life.

I'm not 100% convinced. I have a physical connection to my noise that could very easily be a tinnitus alone and not connected to hearing loss at all. Although you could argue that the jaw / neck issue is related to the ear and hearing in a way.
 
It's easy to argue that. After all we begin to lose hearing very early in life.

I'm not 100% convinced. I have a physical connection to my noise that could very easily be a tinnitus alone and not connected to hearing loss at all. Although you could argue that the jaw / neck issue is related to the ear and hearing in a way.

I completely agree with you, and the results from your poll are very clear to me that something else is going on as well.
 
Only about a quarter of tinnitus is noise induced!

That is the data:

28.70% - Don't know the cause
13.73% - Noise-induced hearing loss (continued noise exposure, occupational noise)
9.59% - Acoustic trauma (explosion, exposure to gunfire or extremely loud, sudden noise)
8.33% - Other (please specify)
7.65% - Virus (ear infection, flu, cold)
6.42% - Spontaneous onset (no apparent cause)
4.84% - Psychological (stress, anxiety, depression)
4.56% - Ototoxic (from drugs or medication)
2.87% - Age-related hearing loss
2.79% - Head or neck injury
2.39% - Sudden hearing loss
2.31% - Meniere's
1.47% - TMJ (issues with the jaw)
1.00% - Ear wax procedure (syringing, candling or other related procedure)
0.68% - Dental treatment
0.66% - Barotrauma (due to change in barometric or water pressure)
0.62% - Ear wax build up
0.60% - Otosclerosis
0.40% - Allergy
0.38% - Metabolic (diabetes, thyroid, B12, hyperlipidaemia etc.)
 
On the other hand, nearly 2/3 of respondents indicate having some hearing loss, so that might play a role in many cases, even when people have identified something else as the primary cause of their tinnitus.
 
Where do you see 66% respondents who indicate hearing loss??
tinnitus-hub-talk-survey-hearing-loss-2016.png
 
Only about a quarter of tinnitus is noise induced!

That is the data:

28.70% - Don't know the cause
13.73% - Noise-induced hearing loss (continued noise exposure, occupational noise)
9.59% - Acoustic trauma (explosion, exposure to gunfire or extremely loud, sudden noise)
8.33% - Other (please specify)
7.65% - Virus (ear infection, flu, cold)
6.42% - Spontaneous onset (no apparent cause)
4.84% - Psychological (stress, anxiety, depression)
4.56% - Ototoxic (from drugs or medication)
2.87% - Age-related hearing loss
2.79% - Head or neck injury
2.39% - Sudden hearing loss
2.31% - Meniere's
1.47% - TMJ (issues with the jaw)
1.00% - Ear wax procedure (syringing, candling or other related procedure)
0.68% - Dental treatment
0.66% - Barotrauma (due to change in barometric or water pressure)
0.62% - Ear wax build up
0.60% - Otosclerosis
0.40% - Allergy
0.38% - Metabolic (diabetes, thyroid, B12, hyperlipidaemia etc.)
How many people was this out of?
 
I'm not sure anymore, but it's weird to hear people like the daughter of a friend who had maxillary surgery and got rid her loud tinnitus, she didn't had hearing loss.

I have moderate hearing loss, but just went through a very difficult and stressful period and guess what? Just got a new tinnitus sound in left ear, but am almost rid of my low buzz in left ear, so if that's possible then other forces are at play here too not just hearing loss :)
 
This is brilliant. Thank you!

Is there anyway to get more of a breakdown regarding the 20.28% whom saw a BIG improvement from "Other (Please Specify). Is there any similar trends in that qualitative data?

That is a rather large portion of the community who are getting success from something!
 
It would be very interesting to correlate the causes with that data!:

Where do you perceive your tinnitus?
One ear 24.70% (1,239)
Both ears 38.57% (1,935)
More in the brain 6.58% (330)
In the ear/s and the brain 28.60% (1,435)
Not sure 1.55% (78)

btw: in my opinion the percentage of both ears is rather high...
 
Nobody seems to be interested...

Whether one ear or both ears, it's just tinnitus. :cool:
With such an attitude towards diagnostics, there is no need to worry about therapy... :banghead:
 
Nobody seems to be interested...

Whether one ear or both ears, it's just tinnitus. :cool:
With such an attitude towards diagnostics, there is no need to worry about therapy... :banghead:
Actually we talked about it yesterday. Sometimes these things are not fast, we're not data analysts and you must appreciate that we do this in our spare time. @Hazel has been doing some analysis, she may be able to post a chart.
 
Head and neck injury, TMJ and other issues and dental treatment added together total 4.97 percent. That figure may be 20.00 percent if neck issues were added as most professional say. Otosclerosis as a factor is much higher for those over 40.

Even with what I said above there are so many things to consider. It's not that simple. Some say that most with tinnitus have at least a little hearing loss. With that a noise exposure can be the straw that broke the camel's back, but the camel's back may also include TMJ and/or neck concerns and/or physical age, etc. It's often just noise for the young, but for those in middle age there's more to consider within the clinical causes per the pathology of tinnitus.

Spontaneous onset and don't know the cause can relate to the paragraph above or something else, maybe a combination of causes on the list. So because of that I do applaud the survey and all the effort involved.
 
Thanks @Steve

@Tinniger , as Steve pointed out, we're doing this next to our full time jobs. I've been spending 20+ hours or so over the past two weeks doing data analysis on the 2016 survey, mostly in Excel. There's such a wealth of information there that the possible number of correlations, comparisons, trends, etc. that can be analysed is huge. The analysis itself is not that straightforward though, because some of the data needs cleaning up. Furthermore, we have to assess whether some results are even reliable enough to post (e.g. due to survey design issues, sample sizes, lack of representativeness of certain brackets, etc.). And finally, it still has to be made to look presentable before we can post/publish.

I did do some more analysis on the somatic versus non-somatic group, as you suggested above. But they're just unformatted pivot tables now and would look totally unreadable if I post them in here as is. Now that the Easter weekend is here I could polish them up, but to be honest right now I just want to catch up on my sleep/rest :)

So be patient, there's more to come...
 
Is there anyway to get more of a breakdown regarding the 20.28% whom saw a BIG improvement from "Other (Please Specify). Is there any similar trends in that qualitative data?

That is a rather large portion of the community who are getting success from something!

Thanks for this suggestion! It triggered me to review the "other" category more closely, since there's an open text field attached to it. Going through the 600+ answers, it became clear that many of them actually fit under one the existing categories, and thus should not be "other" at all. So now I'm going through one by one and recategorising them where appropriate. After this is done, we can see what's still left in the "other" category and whether it still shows a high treatment success rate.
 
This is amazing. Have you had a chance to do any multivariate regression analysis? And rule out the usual violations such as omitted variable bias, irrelevant variable, heteroskedasticity etc in the data set?
 
This is amazing. Have you had a chance to do any multivariate regression analysis? And rule out the usual violations such as omitted variable bias, irrelevant variable, heteroskedasticity etc in the data set?
There has been some analysis. One of the students in the ESIT program has analysed the data and will be doing more work on it. I'm not 100% on what he has used but in the next post I will attach his posters from the recent TRI conference.

We're unfortunately not geared up internally to do full-on statistical analysis, although Hazel has done a pretty sweet job with Excel so far.
 
Very cool! But why Bayesian?
Jorge, the person doing the analysis for the poster, said:

"The idea was to use treatment outcomes to update our expectations towards other treatment outcomes, and for that we thought that Naive Bayes was a good approach"
 
Diagnostic findings can also be gained from the survey.

Even the simple question of whether one or both ears are affected is not uninteresting in connection with the presumed cause.
 
For statistic treatment of this survey that would be interesting to dissociate all those results per group of "cause of tinnitus". For example, it doesn't seem so relevant to me to compare treatment efficiency for 2 persons that don't have the same cause of tinnitus. In others words: focusing the outcomes per cause, not only on one symptom (= tinnitus).
 
So Retigabine without the side effects would be a nice medicine...
And luckily Xenon Pharma is working on that (XEN-1101), the thread can be found here. They already passed phase 1a and are planning to release the complete phase 1 results, including the phase 1b data, in the second half of 2018 and to initiate a phase 2 trial by year end. An update on the positive results of phase 1a can be found here. Sorry if you already knew this, I'm just too excited thinking that this medication might be available at some point. :D
 
Thanks for posting the results of the survey. It was helpful to see the different modes of therapy that people are seeking. However, I didn't see how effective any of the treatments were to the sufferers. That information would be helpful in that perhaps we could try a combination of treatments. Also, it would be great to match up the initial causes of tinnitus with some of the treatments, so like sufferers could isolate said treatments. I suppose that is pretty complicated but would be a useful tool.
 

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