Tinnitus Perception vs. Actual Volume

Discussion in 'Support' started by TheDanishGirl, Aug 24, 2017.

    1. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Beside this wonderful forum I am on a Danish page for people with tinnitus and by now I have heard from several of the members there, that they think tinnitus volume is all perception and that tinnitus is only one level.

      I mean... They are of the opinion that they is no such thing as mild and severe tinnitus but that it is only our perception and attitude towards it which makes us perceive it as loud, mild or moderate.

      I think this is so wrong, what do you guys think??

      Just read further on the same page that a Danish chief therapist who has worked with tinnitus patients since 1993 is of the same opinion!
       
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    2. Paulmanlike

      Paulmanlike Member Benefactor Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      Same could be said about penis size, little willy big willy it's all about perception
       
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    3. Sam Bridge

      Sam Bridge Member Benefactor

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
      You like a status about willies I see lol.
       
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    4. flobo

      flobo Member

      Location:
      Calais, France
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      25-30 minutes of first ever concert
      The psychiatrist and ENT that follows me at the hospital think the same thing.

      I tried to explain that mine react to sounds and well, i can go in a day from something i can barely hear to something as loud as people voice but still, they believe it's my "perception".

      They are wrong, if i take a shower it's louder, every single time.
      My perception doesn't change because i take a shower.
      If i go into silence, it goes down slowly, everytime as well.
       
    5. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Sounds like he has a problem Sam. Why some people choose to divulge such things is beyond me. There is a time and place for everything and that kind of talk is not needed here...
       
    6. Paulmanlike

      Paulmanlike Member Benefactor Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      I made a fair point.
       
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    7. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      The people on the other tinnitus forum may have a point but I try not to delve too deeply into such things, as one can start to pay too much attention to monitoring the tinnitus and it can become more intrusive. I have always tried to take my focus away from the tinnitus. It is not usual for people in the early stages of this condition to react in this way but with time it will cease to be of importance as habituation will occur.

      Michael
       
    8. walkthroughwalls

      walkthroughwalls Member

      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Unknown
      I can agree with this in the sense that tinnitus is a symptom which has an underlying cause. Different people do report different volumes of tinnitus in relation to environmental sounds they hear. But the suffering we experience is purely based on how much our tinnitus bothers us. Someone with loud tinnitus who can ignore most of it suffers just as much as someone with quiet tinnitus who can't take their mind off of it.

      But then again, a similar case could be made about someone without legs who leads a fulfilling life compared to someone with only one leg who is greatly held back by it. That doesn't mean that there are different states of disability.

      Or other words, I think that there are good reasons to assume that loud/quiet tinnitus does exist, and it does influence how much we suffer. However, because tinnitus is all perception and human beings can generally adapt, we can try to perceive our tinnitus as less intrusive/bothersome and therefore suffer less.


      If tinnitus is purely generated in the brain, then we'll have to wait for advances in cognitive science before we can know the answer. If tinnitus is generated in or near the ear, then it may be possible to measure the impulses in the nerves going to the brain and possibly distinguish between loud and quiet tinnitus.

      Right now, we can only guess, and I don't think it has any implications either way. I might as well think about about a beautiful sunset over a lake, with the red-orangy sun reflecting in the water, the odd duck quack in the distance and feelings of romanticism and transience flowing through me. It doesn't solve anything either, but at least it makes me feel good :)
       
    9. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Indeed you did and it shows a lot about the kind of person that you are.
      Michael
       
    10. Foncky
      Tired

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      March 2004
      Cause of Tinnitus:
      Music. Balloon. Genes.
      I had a mild T before that I didn't care about. I now have a loud T and haven't found a way to habituate yet.

      My perception didn't change, I'm still the same person, it just went very bad after another trauma. So I think this is really, really wrong.
       
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    11. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      There doesn't need to be a gray area here. We have tools to measure perceived loudness of Tinnitus, and it is routinely done during clinical trials and studies (as loudness is often one of the main outcomes measured).
      So it is (relatively) easy to measure the perceived T level of a patient, just like it's easy to measure the perceived level of a pure tone for a non-T person (as a reference to another pure tone).
      You get a measurement that determines the loudness perceived by the person. When it comes to sound, perception is reality (there is no "objective measurement" we can do with a probe and tell you "aha! look this is a 10 dB stimulus that you are reporting as 50 dB!"). By definition, when one goes through a volume matching process, that's the perceived level and when the audiologist looks at his/her instruments/tools, s/he will read what the dB level was, subtract any hearing loss at that frequency, and the result is what the patient perceives in loudness (dB SL as in Sensory Level).

      The results available (and published) show a variety of volumes perceived. Most of them are in the low 5-10 dBs (I provided references to this in one of my recent posts), but we know of people who have it much louder than that (they have provided their measurements on this very forum).

      Intuitively, we can also infer that there is a quite large spectrum of volumes of T from people in here reporting mild symptoms that "disappear" when a fan is turned on in the room, or on the other end of the spectrum, sounds that can be heard while taking a shower. Clearly these aren't equivalent, and I bet nobody will argue about which one we'd rather have.
       
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    12. Paulmanlike

      Paulmanlike Member Benefactor Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      What kind of person is that?
       
    13. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      That is total nonsense. The level of tinnitus is different for all people, some have low, some mild, some severe (mine).
       
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    14. Paulmanlike

      Paulmanlike Member Benefactor Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      I wonder Sandra if you ask him about single or multi tone tinnitus? Is that again just about perception? Mmmm
       
    15. CrazyT
      Benevolent

      CrazyT Member

      Location:
      Denmark
      Tinnitus Since:
      08-2017
      Cause of Tinnitus:
      Doxycycline and Quinine HCL
      Could be taken out of context. To me it sounds like complacent circle-jerking, or that blue pill you can take in the Matrix. Maybe the delusion is the remedy.
       
    16. AUTHOR
      AUTHOR
      TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      No, I haven't but I bet he would just say that it is my imagination or something :(
       
    17. AUTHOR
      AUTHOR
      TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      It really saddens me to learn that people are still so ignorant when it comes to tinnitus:( Of course their are different levels of tinnitus! lots of members here are proof of that.

      But yeah, put it down to perception :meh:just another way of saying you are imagining things (you are crazy) and make people feel like it is their own fault that they have severe tinnitus:( They could just learn to perceive it differently, jeez!!
       
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    18. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      @TheDanishGirl

      Try not to concern yourself with what other people think about tinnitus. The tinnitus that you are experiencing is unique to you and that is all that matters and how you are able to cope with it. No-one knows what you are going through and how it affects you emotionally. Just take one day at a time and try not to stress yourself out.

      Michael
       
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    19. UpDownAround
      Spaced

      UpDownAround Member

      Tinnitus Since:
      1985
      Cause of Tinnitus:
      unknown
      We crazy people prefer the term "sanity challenged". I have occasional delusions as part of my bipolar disorder so I guess I am habituated to people questioning the reality of what I perceive. I think the idea of volume is purely perception. Volume is measured in decibels of audible vibrations. There are no audible vibrations.
       
    20. Alue
      No Mood

      Alue Member Hall of Fame

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I had my tinnitus level measured numerous times during the AM101 trials and it was consistently between 28 and 30 dbsl. The audiologist commented on how consistent my results were. I'm a little surprised most people fall between 5-10db. Wouldn't 30db be four times the volume assuming 10db is average? Is this including people with mild tinnitus that doesn't bother them at all, or would those people likely not even participate in those studies?
       
      • Good Question Good Question x 1
    21. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I got that data from the book about Tinnitus (Aran, Tonndorf, Feldmann, Vernon), and if I recall it correctly, it was a general statement from the authors about the typical severity of T (it was in the intro chapter). They were making a point that for most people, T is a mild stimulus (in the 5-10 dB), but that it can sometimes still be very distressing, even at this mild levels.

      My reading of it is that they stated this based on their experience in various fields, as researchers, clinicians, etc... it wasn't one specific study or source.
      I tend to think that it makes sense, as the sense I get from the "big guys" (professionals/doctors, ATA, BTA, etc) is that it is generally mild and can be managed with a few simple tricks (fans, white noise machines, etc).

      We in here are, in many cases, a few sigmas off of the center of the bell curve (if it were a bell curve - there is no reason it should be, it's just a figure of speech). It's no surprise that we are skeptical when everyone around us talks about T as if it wasn't a big deal. But according to pretty much everything I read, for a majority of T people, it isn't a big deal. But for us it is, and many of us in here are off the charts in terms of loudness. Perhaps that's why we end up here and represent a very biased sample of the T population.
       
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    22. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      We live in an ignorant world and that will not be changing anytime soon. It is about standing your ground (I made a post about this) and taking care of YOU! Don't be discouraged at all, keep up the good job and keep moving forward.

      Who cares what clueless people say or think. They are not in your shoes and don't live the life you live. You are doing wonderful and that's all that matters :)
       
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    23. Shera
      Bookworm

      Shera Member

      Location:
      USA
      Tinnitus Since:
      12/9/2016
      Cause of Tinnitus:
      head trama caused TMJ/neck problems/ETD
      I don't buy it at all. Some can stay the same tone and range for ever. Never changing. Mine was like that before it got worse and now it's louder and ever changing.

      There's groups for each and not believing each other is the problem. Just like with medication side affects may vary.
       
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    24. Kolisar
      No Mood

      Kolisar Member Benefactor

      Tinnitus Since:
      birth?
      Cause of Tinnitus:
      unknown
      Technically, everything we experience is "perception". So, the Danish forum members are, technically, correct.

      That being said, I disagree. I know that my tinnitus volume increased dramatically. I also know that I cannot drown it out with music, certainly not with a volume that is less than would cause other hearing damage.

      But, even if it is just perception, what does that matter? What is important is how it is affecting the person suffering from tinnitus. As @GregCA said, even a "low" volume can be very distressing. While it would be interesting to get a objective measure of tinnitus volume, I do not believe that is relevant information (with the possible exception if that information can be used to predict habituation or masking success).

      Your tinnitus is as "minor", 'moderate", or "severe" as you feel it is. It is as "minor", 'moderate", or "severe" as its effect on you. It could be 5dB and driving you to suicide, or 50dB and you are fully habituated. I would consider the first a more "severe" case than the second solely because of the effect. It is the same as a headache, again something that we cannot measure, but if you say you have a "really bad" headache, people do not question if you exaggerating or if all headaches are really the same level of pain and you are just "weaker" on this day and "just can't handle it".

      I agree with both @TheDanishGirl and @fishbone, there is a lot of ignorance in the world about tinnitus.
       
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    25. brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      Trying to add some optimism here. I have what I consider to be very severe T (I can nearly always hear it in the shower) but I am beginning to get good glimpses of habituation to perception. When this is happening for me the T is essentially gone no matter what the volume. I think I would have reached this point a lot sooner though if my T wasn't such a nightmare.
       
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    26. Makrohn
      Supportive

      Makrohn Member Benefactor Advocate

      Location:
      Norway
      Tinnitus Since:
      1996
      Cause of Tinnitus:
      Hearing loss - Explosion - Stress
      Great question either way about the volume of T, and researchers should listen to us on this one.

      If we agree that perception and attitude is a big part in how volume is experienced in each individual, what other factors decide the volume? I have a fluctuating T with 3 sounds, 2 are stable 1 comes and goes.
      I am 100% sure the volume of my different T varies since I can separate them. It can change in hours (mostly) days or weeks. And the 3 tones dont all go up at the same time.

      What makes some frequencies go up and others dont? What decides the volume... the brain, right? So, is there a link between how severe your i.e. cochlea is damaged and how loud the brain interpret the T?

      I think this question is of relevance and importance in finding a cure or way of relief.
       
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    27. VincentWinters
      Dreaming

      VincentWinters Member

      Location:
      Essex, UK
      Tinnitus Since:
      Aug 2017
      Cause of Tinnitus:
      unknown
      I'm thinking some peoples T is more "intrusive" than others. I know that if I focus on it I can hear it through anything. Most of the time I just mentally shut it out, which is easier with sound and much easier during the day. Still not figured out sleep yet.
       
    28. Applejuice

      Applejuice Member

      Tinnitus Since:
      20-3-2017
      Cause of Tinnitus:
      Unknown
      Perception making it less worse is saying like you can still stand on a broken leg because your leg is still attached to your body. It's nonsense, I'm sitting here now and I'm trying to make my T go away but it won't. It'll keep coming back, well let me rephrase that: it never goes away. My attitude towards T does change the experience though. Sometimes I just can't take it anymore and then I distract myself so much until I feel better. The loudness however never changes.

      Thoughts like perception are the things that keep T research back and people with T are treated like we should man up. We man up otherwise we wouldn't be breathing and reading on this forum.

      "It's just a sound" is like saying to someone to step into a lava pit claiming "it is only warm".
       
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    29. william adams
      Wishful

      william adams Member Benefactor

      Location:
      S Jersey
      Tinnitus Since:
      December 2015
      Cause of Tinnitus:
      one week after leg surgery plus hearing loss in higher freq.
      personally I think the pitch is as important in perception as the volume.
       
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    30. Makrohn
      Supportive

      Makrohn Member Benefactor Advocate

      Location:
      Norway
      Tinnitus Since:
      1996
      Cause of Tinnitus:
      Hearing loss - Explosion - Stress
      And then the question about perception arises. If someone else had your specific T, would that person experience the volume in the same way. If we think about it, most people experience sound differently... what some people find loud, others find acceptable and the other way around.

      @Applejuice

      Yeah, I really follow you on that one, and to some point I agree with you. Trying to get your T to go away really comes down to that it has to be in your brain. If the damage is in the ears, as we all know the ears do not heal themselves, the T would not go away before the damage is fixed. If however the T is in the brain, and the brain only, then one would think that there should be some way to "manipulate" the brain with either hypnosis, yoga, deep meditation or some sort of meds.

      Pitch and volume is absolutely in the same street of importance. What I find difficult to understand is what exactly decides the pitch and the volume? I have a hearing loss from birth, and I hear both a hiss, high pitch and a low tone..
      It seems legit that the parts of the cells in the ears being damaged are responsible for the pitch, but what decides the volume then..Really a interesting field to dig in to
       
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