Tinnitus Hub / Talk Survey Results

[Steve]

Hi everyone,

Below you can find the results from our survey and the article that was published in the ATA Tinnitus Today magazine.

It is an amazing feat; we received 5,017 responses — this makes it the largest ever survey on tinnitus patients.

The survey results are a print straight from the survey software, not the best quality but would take a long time to reproduce in a nicer format (if there are any volunteers who want to do that of course we're happy to let you ).

If you have any questions, want to know how a certain group compares against another or to compare one question against another just comment and I'll post the answer.

We were also featured in the American Tinnitus Association's Tinnitus Today magazine (spring 2016 issue).

​

 

[valeri]

Interesting to see that the majority has minor or no hearing loss at all!

Hmmmmm...

 

[Steve]

Interesting to see that the majority has minor or no hearing loss at all!

Hmmmmm...

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.

 

[bill 112]

I've had my hearing checked multiple times, all the way up to 16000 Hz I believe it was? Anyway they always came back with perfect results! I have horrible hyperacusis and crazy reactive tinnitus. I'm going for another full hearing test tomorrow including OAE and DPOAEs so it'll be interesting to see what the results are. My tinnitus started mysteriously.

 

[Sound Wave]

Somatic tinnitus seems to be very common. Stress, anxiety and depression also seem to be very common pre-conditions to tinnitus.

@Steve, what was the reaction from the research community to this? Did you talk about 'fringe questions' and the need for those? If I were a tinnitus researcher, I would love to tap into this community for all sorts of questionnaires and I bet this community would love to help!?

 

[slazien]

This is a very interesting dataset Steve. Would you mind sharing it with me? I'm doing lots of data analysis and machine learning with Python and R and would love to look at this data (given that I also have tinnitus).

 

[Steve]

Somatic tinnitus seems to be very common. Stress, anxiety and depression also seem to be very common pre-conditions to tinnitus.

@Steve, what was the reaction from the research community to this? Did you talk about 'fringe questions' and the need for those? If I were a tinnitus researcher, I would love to tap into this community for all sorts of questionnaires and I bet this community would love to help!?

The people I spoke to were impressed by the size of the data set. I do believe we have the largest ever collected so it's no surprise.

One good thing was that a lot of the data we have here correlates with figures that were used in presentations. Hyperacusis is higher in our survey, physical links are about the same. The anxiety relationship I feel may be something that isn't measured as every presentation that I saw mention it just related that the two were related. We have some very reliable figures now to show the prevalence.

No matter what is found with our data it will show one of two things - that crowd-sensing on a large scale, from patient opinion, can be equally as reliable as information gained from a clinical setting - or - that there is a slight deviation when self-reporting that we can adjust for when carrying out large scale surveys like this.

The opportunity to contribute to research by large scale surveys like this one is pretty exciting to me. As patients we are limited in what we can do to push things forward, things like this we can do cheaply and quickly and we can make a difference.

This is a very interesting dataset Steve. Would you mind sharing it with me? I'm doing lots of data analysis and machine learning with Python and R and would love to look at this data (given that I also have tinnitus).

Yes, of course, just message me and I'll share the files.

 

[Sound Wave]

I wonder, should we investigate using the Apple ResearchKit for starting to really collect clinical grade data about tinnitus...?

 

[Mic]

Thanks for organizing, processing en sharing this interesting survey with us @Steve .

If you have any questions, want to know how a certain group compares against another or to compare one question against another just comment and I'll post the answer.

Hoping that the data of this survey is available in a flexible (read: editable) format for segregating different analysis I have two elaborations for you regarding the effectiveness of Retigabine in the form of different hypotheses:

Regarding the relation between effectiveness of Retigabine as a treatment and the duration of tinnitus:

• H0: The perceived effectiveness of Retigabine does not correlate with the total duration of tinnitus.
• H1-3: The perceived effectiveness of Retigabine is higher with shorter duration of tinnitus (iow: difference between 1-3 months, 3-6 months and > 6 months).

Regarding the relation between effectiveness of Retigabine as a treatment and the frequency of the perceived tinnitus.

• H0: The perceived effectiveness of Retigabine does not correlate with the perceived frequency of tinnitus.
• H1-4: The perceived effectiveness of Retigabine is higher with low freq. (0-3 kHz) / middle freq. (3-6 kHz) / high freq. (6-9 kHz) / very high freq. (> 9kHz).

Hope that @Steve or other TinnitusTalk members with the necessary knowledge, skills and resources can do a first attempt to falsify these hypotheses.

Thanks in advance,
MIC

 

[Zug]

Hi Everyone,

These are the results from our survey. It's a print straight from the survey software, not the best quality but would take a long time to reproduce in a nicer format (if there are any volunteers who want to do that of course we're happy to let you ).

Very interesting about the food part. The idea that caffeine makes tinnitus worse seems very widespread, and most people here don't feel problems with any food (I'm included). One doctor told me to cut caffeine because it was bad for tinnitus. That's the kind of information that could be useful to practitioners.

 

[Aussie Lea]

Very interesting about the food part. The idea that caffeine makes tinnitus worse seems very widespread, and most people here don't feel problems with any food (I'm included). One doctor told me to cut caffeine because it was bad for tinnitus. That's the kind of information that could be useful to practitioners.

http://psychcentral.com/lib/experts-challenge-caffeine-tinnitus-link/

 

[Zug]

The people I spoke to were impressed by the size of the data set. I do believe we have the largest ever collected so it's no surprise.

One good thing was that a lot of the data we have here correlates with figures that were used in presentations. Hyperacusis is higher in our survey, physical links are about the same. The anxiety relationship I feel may be something that isn't measured as every presentation that I saw mention it just related that the two were related. We have some very reliable figures now to show the prevalence.

No matter what is found with our data it will show one of two things - that crowd-sensing on a large scale, from patient opinion, can be equally as reliable as information gained from a clinical setting - or - that there is a slight deviation when self-reporting that we can adjust for when carrying out large scale surveys like this.

The opportunity to contribute to research by large scale surveys like this one is pretty exciting to me. As patients we are limited in what we can do to push things forward, things like this we can do cheaply and quickly and we can make a difference.


Yes, of course, just message me and I'll share the files.

@Steve I was just thinking about it. The way I would do it would be to reach to an active researcher and ask if he/she didn't have some master/PhD candidates willing to score some publications. Give them the data and ask them to acknowledge TinnitusTalk on any published results. Did you made any contact at TRI that could be interested? I could search for someone in Brazil, but in this case I think proximity is a plus and I would choose someone based in the U.K.

I'm sure the people on TinnitusTalk could do a good job analyzing the data by ourselves, but this way would legitimate the results in a way we can't do alone.

Anyway, just my 2 cents. If you want to talk, you know where to find me

 

[Alue]

If you have any questions, want to know how a certain group compares against another or to compare one question against another just comment and I'll post the answer.

Thanks for all your work on this!

Is there any way to correlate where people perceive their tinnitus (eg. ear(s) / brain) and how long they have tinnitus for?

 

[Mario martz]

Somatic tinnitus seems to be very common. Stress, anxiety and depression also seem to be very common pre-conditions to tinnitus.

@Steve, what was the reaction from the research community to this? Did you talk about 'fringe questions' and the need for those? If I were a tinnitus researcher, I would love to tap into this community for all sorts of questionnaires and I bet this community would love to help!?

This is really interesting.

 

[slazien]

I'm really eager to analyse the data, I'm currently waiting for @Steve to share the raw data with me.

 

[slazien]

Thanks for all your work on this!

Is there any way to correlate where people perceive their tinnitus (eg. ear(s) / brain) and how long they have tinnitus for?

You could make barplots to visualize that (2 categories - "brain" and "ears"), check whether the data meets certain assumptions (such as roughly normal distribution etc.) and do a t-test, that could shed some light as to whether there is a statistically significant difference (hate using that phrase, it's so overused today) between time since onset and "place" of perception.

 

[Steve]

Regarding the relation between effectiveness of Retigabine as a treatment and the duration of tinnitus:

• H0: The perceived effectiveness of Retigabine does not correlate with the total duration of tinnitus.
• H1-3: The perceived effectiveness of Retigabine is higher with shorter duration of tinnitus (iow: difference between 1-3 months, 3-6 months and > 6 months).

There possibly aren't enough people in the Retigabine group to get reliable stats on the duration, I've run a comparison and there's no statistical significance between the groups (software gives 95% confidence of significant differences between groups). See the chart below.

Regarding the relation between effectiveness of Retigabine as a treatment and the frequency of the perceived tinnitus.

• H0: The perceived effectiveness of Retigabine does not correlate with the perceived frequency of tinnitus.
  
• H1-4: The perceived effectiveness of Retigabine is higher with low freq. (0-3 kHz) / middle freq. (3-6 kHz) / high freq. (6-9 kHz) / very high freq. (> 9kHz).

We don't have data on the perceived tinnitus frequency unfortunately.

 

[Steve]

Very interesting about the food part. The idea that caffeine makes tinnitus worse seems very widespread, and most people here don't feel problems with any food (I'm included). One doctor told me to cut caffeine because it was bad for tinnitus. That's the kind of information that could be useful to practitioners.

5,017 people is a pretty large sample set so it's safe to assume that we have accurate data, give or take a little. We are all pretty expert in our own tinnitus and are all too aware when things make it worse.

@Steve I was just thinking about it. The way I would do it would be to reach to an active researcher and ask if he/she didn't have some master/PhD candidates willing to score some publications.

In progress - hope to update on that soon.

Is there any way to correlate where people perceive their tinnitus (eg. ear(s) / brain) and how long they have tinnitus for?

There is and there are patterns too. Where the box is shaded there are significant differences between the groups listed (either higher or lower, it only shows which when you hover within the software, so you'll have to do a little reading of the table)

Seems we are more likely to develop it in both ears the longer we have had it. Mine started in one ear and I felt kind of imbalanced, I often wondered if tinnitus progressing to both ears was my brain restoring some kind of equilibrium.

 

[Alue]

There is and there are patterns too. Where the box is shaded there are significant differences between the groups listed (either higher or lower, it only shows which when you hover within the software, so you'll have to do a little reading of the table)

Seems we are more likely to develop it in both ears the longer we have had it. Mine started in one ear and I felt kind of imbalanced, I often wondered if tinnitus progressing to both ears was my brain restoring some kind of equilibrium.

View attachment 9838

Interesting. Thanks.

I had wondered if tinnitus moves toward the brain as it moves from the "acute" to "sub-acute" or "chronic" phase.

 

[AlexSongitus]

Interesting. Thanks.

I had wondered if tinnitus moves toward the brain as it moves from the "acute" to "sub-acute" or "chronic" phase.

That is interesting because that data set seems inconclusive to me as far as tinnitus centralizing in the brain as time passes by. It's all over the place. It seems like an insignificant rise from the acute to post acute, and then after that it just fluctuates from time frame to time frame.

Or rather better said, that date set actually makes a strong case against the theory of tinnitus shifting from ears to brain over time. Seems to me it's about the same. The only significant change is from one ear to two years over time. I guess if most people experience trauma in both ears, it's very well possible one ear may be closer to the damage threshold at the time of the trauma while the other is healthier, so some people only develop tinnitus in one ear initially, and after awhile, the other just follows along.

Of course, to play a bit of devil's advocate, this has more to do with the perception of tinnitus, rather than where it's truly located. Just because we perceive it in the same place, ears, it doesn't necessarily mean it didn't shift to the brain. So the data doesn't support that theory, but it also can't disprove it.

 

[Alue]

That is interesting because that data set seems inconclusive to me as far as tinnitus centralizing in the brain as time passes by. It's all over the place. It seems like an insignificant rise from the acute to post acute, and then after that it just fluctuates from time frame to time frame.

Or rather better said, that date set actually makes a strong case against the theory of tinnitus shifting from ears to brain over time. Seems to me it's about the same. The only significant change is from one ear to two years over time. I guess if most people experience trauma in both ears, it's very well possible one ear may be closer to the damage threshold at the time of the trauma while the other is healthier, so some people only develop tinnitus in one ear initially, and after awhile, the other just follows along.

Of course, to play a bit of devil's advocate, this has more to do with the perception of tinnitus, rather than where it's truly located. Just because we perceive it in the same place, ears, it doesn't necessarily mean it didn't shift to the brain. So the data doesn't support that theory, but it also can't disprove it.

Yes, the data doesn't seem to support that theory. But that's good to know. The shift to both ears is an interesting finding.

Nobody knows what time frame represents acute and sub-acute. It could happen much faster than the general 3-6 months previously thought.

 

[Cheza]

We don't have data on the perceived tinnitus frequency unfortunately.

I wish we could narrow it down and correlate the effectiveness of retigabine with cause of tinnitus. Also correlation with severity would be interesting.

It's encouraging to see the 25% improvement, since I'm almost at the 2-year anniversary, although I certainly lost a significant edge by not obtaining it after the first year. I would have to go out of country to get it, as the doctors in this area are painfully conservative with dispensing off-label meds.

This is all extremely valuable info. Thank you so much for your time and effort to do this on behalf of all of us who struggle with tinnitus every day.

 

[OnkelFritz]

The survey is really interesting, would be great to see it pinned somewhere or make it as headline on the site so everybody can see it. At the moment it´s a bit hidden.

 

[Mic]

I've run a comparison and there's no statistical significance between the groups

That's a pity... maybe these hypotheses could be the subject of a probable survey in the future to get more insight in acute vs. chronic tinnitus and frequency dependence of potent medication for tinnitus.

All in all thanks for your effort and time @Steve and @Markku!

 

[glynis]

Thank you for putting the results of the survey up and was nice to look through the results and like others quite shocked to notice not many reported hearing loss... lots of love glynis

 

[Steve]

Thank you for putting the results of the survey up and was nice to look through the results and like others quite shocked to notice not many reported hearing loss... lots of love glynis

Me too. There will be a number who don't realise they have any hearing loss as they haven't been tested. Even accounting for that it seems a high number.

That's a pity... maybe these hypotheses could be the subject of a probable survey in the future to get more insight in acute vs. chronic tinnitus and frequency dependence of potent medication for tinnitus.

All in all thanks for your effort and time @Steve and @Markku!

There is a lot more to explore from this data. Where there are a few patterns we should be able to dig deeper; my main focus in the design was to get information on sub-types. It needs a statistician now, one who can compare multiple variables from the primary secondly and tertiary causes given and find the patterns with other variables alongside which treatment helped the most.

 

[Alue]

There is a lot more to explore from this data. Where there are a few patterns we should be able to dig deeper; my main focus in the design was to get information on sub-types. It needs a statistician now, one who can compare multiple variables from the primary secondly and tertiary causes given and find the patterns with other variables alongside which treatment helped the most.

Did you find someone willing to help with this?

 

[Shafii sigera]

I have always thought and known that hearing loss is a myth and I think that's where they're missing the point.

I think they're confusing hearing and understanding. I mean if you're able to match your tinnitus frequeny does that mean you can hear those frequencies.

They're saying you're losing higher frequencies at first. I have done a higher frequency test several times, and I can still hear.

There are people who can not hear but have tinnitus.

I think until they figure this out we are not any closer to cure. Just imagine two speakers playing at different volumes, one low and the other high.

It's logical that you will only hear the louder one, not the low one. But this does not mean you're not able to hear the lower sound. I just think they're moving in a wrong direction...

 

[Steve]

I have always thought and known that hearing loss is a myth and I think that's where they're missing the point.

I think they're confusing hearing and understanding. I mean if you're able to match your tinnitus frequeny does that mean you can hear those frequencies.

They're saying you're losing higher frequencies at first. I have done a higher frequency test several times, and I can still hear.

There are people who can not hear but have tinnitus.

I think until they figure this out we are not any closer to cure. Just imagine two speakers playing at different volumes, one low and the other high.

It's logical that you will only hear the louder one, not the low one. But this does not mean you're not able to hear the lower sound. I just think they're moving in a wrong direction...

I do agree with you, I've often felt that the hearing loss link is overplayed. Although one thing to remember here is that this is self reported, many people could have a reasonable hearing loss and still feel like they have none. This still doesn't account (in my eyes) for the high numbers in the survey though.

When I first got diagnosed they blamed a slight hearing loss. I would argue now that I struggle to hear quite so well around my tinnitus because when in a soundproof room it jumps right up and confuses my perception of sound around the tinnitus tones.

 

[erik]

I don't think many people get regular hearing tests before they develop tinnitus so most don't really know for sure if they have experienced hearing loss or not. When I first got tinnitus, I had an audiogram and high frequency audiogram. It did show a little loss in the higher frequencies but since I hadn't had a hearing test in 20 years I had no baseline to compare it to.