Tinnitus Hub / Talk Survey Results

Discussion in 'Research News' started by Steve H, Mar 22, 2016.

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    1. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Hi Everyone,

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

      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).

      american-tinnitus-association-ata-can-patients-help-steer-research.png

      tinnitus-hub-survey-results.png
       

      Attached Files:

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    2. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Interesting to see that majority has minor or no hearing loss at all!
      Hmmmmm.......
       
    3. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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 8kHz for the majority though due to the test limitations.
       
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    4. bill 112
      Studious

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      I've had my hearing checked multiple times,all the way upto 16000hz I believe it was?Anyway they always came back with perfect results!I have horrible H and crazy reactive T.Im going for another full hearing test tomorrow including OAE and DPOAEs so it'll be interesting to see what the results are.My T started mysteriously but my T increases and H were caused by noise exposures.
       
    5. Sound Wave
      Curious

      Sound Wave Member Benefactor Team Tech

      Location:
      Finland
      Tinnitus Since:
      12/2013
      Cause of Tinnitus:
      Probably headphones
      Somatic T seems to be very common. Stress, anxiety and depression also seem to be very common pre-conditions to T.

      @Steve H, 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 T researcher, I would love to tap into this community for all sorts of questionnaires and I bet this community would love to help!?
       
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    6. slazien
      Studious

      slazien Member

      Tinnitus Since:
      03/2015
      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).
       
    7. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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.
       
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    8. Sound Wave
      Curious

      Sound Wave Member Benefactor Team Tech

      Location:
      Finland
      Tinnitus Since:
      12/2013
      Cause of Tinnitus:
      Probably headphones
      I wonder, should we investigate using the Apple ReseachKit for starting to really collect clinical grade data about T...?
       
    9. Mic
      Buzzed

      Mic Member

      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Otitis media / Ear infection
      Thanks for organizing, processing en sharing this interesting survey with us @Steve H .

      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 T:
      • H0: The perceived effectiveness of Retigabine does not correlate with the total duration of T.
      • H1-3: The perceived effectiveness of Retigabine is higher with shorter duration of T (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 T.
      • H0: The perceived effectiveness of Retigabine does not correlate with the perceived frequency of T.
      • 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 H or other TT members with the necessary knowledge, skills and recourses can do a first attempt to falsify these hypotheses.

      Thanks in advance,
      MIC
       
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    10. Zug

      Zug Member Benefactor

      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 T. That's the kind of information that could be useful to practitioners.
       
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    11. Aussie Lea
      Dramaqueen

      Aussie Lea Member

      Location:
      Melbourne Yarra Valley
      Tinnitus Since:
      01/09/2013
      http://psychcentral.com/lib/experts-challenge-caffeine-tinnitus-link/
       
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    12. Zug

      Zug Member Benefactor

      @Steve H 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 TT 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 base in the U.K.

      I'm sure the people on TT 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 ;)
       
    13. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      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?
       
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    14. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      This is really interesting
       
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    15. slazien
      Studious

      slazien Member

      Tinnitus Since:
      03/2015
      I'm really eager to analyse the data, I'm currently waiting for @Steve H to share the raw data with me.
       
    16. slazien
      Studious

      slazien Member

      Tinnitus Since:
      03/2015
      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.
       
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    17. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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.
      We don't have data on the perceived tinnitus frequency unfortunately.
      Screen Shot 2016-03-30 at 05.15.32.png
       
    18. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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.

      In progress :) - hope to update on that soon.

      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.
      Screen Shot 2016-03-30 at 05.32.49.png
       
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    19. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Interesting. Thanks.

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

      AlexSongitus Member Benefactor

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Noise induced
      That is interesting because that data set seems inconclusive to me as far as T 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 T 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 T 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 T, 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.
       
    21. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      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.
       
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    22. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      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.
       
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    23. OnkelFritz

      OnkelFritz Member Benefactor

      Tinnitus Since:
      2005
      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.
       
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    24. Mic
      Buzzed

      Mic Member

      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Otitis media / Ear infection
      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 T and frequency dependence of potent medication for T.

      All in all thanks for your effort and time @Steve H !
       
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    25. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Thank you for putting the results of the servey up and was nice look through the results and like others quite shocked to notice not many with hearing loss reported.......lots of love glynis
       
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    26. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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.

      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.
       
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    27. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Did you find someone willing to help with this?
       
    28. Shafii sigera

      Shafii sigera Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Unknown
      I have always thought and know that heating loss is myth and i think its where their missing the point,. I think their confusing abt hearing and understanding i mean if your able to match your frequency of T does that mean you can hear those frequencies,. Their saying your loosing higher frequency at first i have done a higher frequency test several time, and i can still hear,. Their people who can not hear but have T,.i think until their figure this out we are not close to cure,. Just imagine two speaker are playing at different volume one low and the other at high,. Its logical that you will only hear the louder one not the one in low volume, but this does not mean your not able to the other lower voice,. I just think their moving in a wrong direction..
       
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    29. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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.
       
    30. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      I don't think many people get regular hearing tests before they develop T so most don't really know for sure if they have experienced hearing loss or not. When I first got T, 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.
       
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