Need for an Objective Measure of Tinnitus

Discussion in 'Support' started by Steve, Jul 31, 2017.

    1. Steve
      Creative

      Steve Member Benefactor Hall of Fame

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      A conversation I had recently with someone in Pharma really hit home for me the importance of having an objective measure for tinnitus.

      For any company looking at the problem of tinnitus the only way of measuring improvement right now is to ask a series of questions. There is MRI and the like but who can say the part of the brain we should be measuring change within?

      Because the perception of tinnitus is subjective you are entirely at the mercy of the individual. So many things could affect us that it's a little bit of a lottery whether you will see improvement or not. If we had a real "cure" drug it would be obvious. But in reality a treatment is going to have a certain effect that has to be measured by relying on the patient supplying a set of answers to a set of questionnaires.

      It's pretty unreliable. As a Pharma I would be nervous about doing tinnitus research until there was a real objective measurement that I could rely on.

      This leads me to think that development of an objective measurement for tinnitus is one of the most important things we need right now, to attract more interest and funding into research.
       
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    2. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      I can! :eek: How about all of it?

      I think the root of all evil is somewhere in the brainstem, not in the neocortex. We can start at the medulla and work our way up. But to guide us in the right direction we can aggregate all medical records of all tinnitus patients in the world, as well as people without tinnitus. Collect everything! Google would be more than happy to help us with that. Let the inevitable happen already.

      As an investigator you can then pick and chose from maybe 4 billion medical records. Finding the right candidates for clinical trials would be a breeze.
       
    3. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      As for MRI costs, they need to be be made cheaper and accessible to more investigators. Cheaper! Less bulky! Preferably handheld!

      So we can tell if the lifeform of interest has tinnitus!

      a6eb_star_trek_tricorder_inuse2.jpg
       
    4. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      Except for privacy laws (at least in the U.S.) restricting access to patient medical records. Even accessing my own patient records requires signing a few legal documents.

      Oh that dude definetly has tinnitus. All that time spent on race karts . . . :LOL:
       
    5. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      Oh I know! :eek: What kind of planet is this! The nurses here in Sweden know more about me than I do!

      It's not unusual to read in the news about leaked medical records here. By who else than those with access! Not exactly the patient himself/herself. I can imagine these so called "professionals" take a coffee break and look people up just out of curiosity. Just as if you would google someone. It's so convenient for them now, just a few key strokes and a mouse click. No sweat! No running up and down the stairs to grab hold of physical records. Everything is electronic and digital, and it's in front of their noses. It must be so difficult being a medical worker these days! :eek: So difficult to restrain yourself from looking. Then they go back home or to friends blabbing about who has what disease or whatever.

      Even if they don't blab, they have no business in there, unless you have told them explicitly that they should have a look. For example when you are having an appointment. But technically, it's all in the open for them, access is not technically disabled without your permission.

      There have been a number of such data breaches here in the past couple of years. There are probably more than what's accounted for. Thankfully it's all logged. But most people don't know how to check the log, or they don't care enough to look this over. They simply expect the professionals to have their best interest in mind. Personally, I would like to take care of my own best interests myself. I don't trust the "professionals". I have met too far many professionals in my life. So I would like our system to revolve around the patient, not the medical worker. The patient should be the only one with full access to these records, and give out permissions on a case to case and need to know basis. Not too unlike the way Facebook works actually.

      I don't need that in Sweden. I can visit a dedicated website, sign in securely. Then I can browse the doctor's annotations, diagnoses, look at blood work reports, and if you have kids you can look at how fast they are growing, in either a list or a graph. There is a lot of funny new features coming that way.

      We have a brand new agency whose sole purpose is digitizing the healthcare system. But here is the funny part! When you want to seek medical help in another county, and you need to be hospitalized, or you move to that county, they can't transfer your records. This still needs to be done like in 1976 by good old paper work. Pathetic! Who knows where we would be today without all the bureaucracy and gray old professors who sit on deciding chairs and hinder progress, and who are way past their retirement but won't go and make way for new generation to take over.
       
    6. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Snafu with Google's Deepmind and NHS.
       
    7. slipware
      Bookworm

      slipware Member

      Tinnitus Since:
      2012
      I had a TIA, the MRI shows damage in my brainstem, you hit the nail in the head. I say my ears are shrieking for England, but it's the brain going berserk, not the ears.
      Today I'm having a dreadful spike, self inflicted by a theatre visit, even though I fully protected my earswith plugs. Hate it, but I'm hopeful it will fade to its normal loud (as opposed to super loud), tones soon....
       
    8. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      I can access my medical records (and my children's records) via a portal as well. Even have an app on my phone for one medical facility that enables me to review my MRI scans, all bloodwork, doctor notes, email my medical team, etc.

      But, I had a recent surgery and for access to those files I had to go to the hospital, show proof of ID, and sign paperwork. My follow up visit with the surgeon logged much of it through the portal, but I had to work through the hospital to get specific details regarding medications I received and the anesthesiologist's notes.
       
    9. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
    10. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      This is similar in some respect in how it is here. You kind of have it all digital and accessible, until you don't.

      "Sweden Sinks Into Political Chaos After Classified Data Breach"

      "The agency ignored warnings from the Swedish Security Service, and sidestepped rules on outsourcing. Romania and the Czech Republic were among countries handling the contract, with foreign personnel who didn’t have Swedish security clearance gaining access to classified information. This included data on military vehicles, protected identities and Sweden’s register of drivers’ licenses."

      https://www.bloomberg.com/news/arti...nt-faces-no-confidence-votes-after-it-scandal

      As I said, it is pretty much inevitable these days. Even if it oftentimes can be avoided it will likely not be. Those that sit and decide don't understand technology well enough, and what's even worse is they don't have common sense and they don't take no for an answer.
       
    11. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      Jeremy Turner, a surgeon from the US had an idea a few years ago on how to measure tinnitus objectively.

      https://www.newscientist.com/blog/invention/2008/01/startling-tinnitus-test.html

      What a genius! Another noise blast is just what I need!
       
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    12. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      Jeremy Turner clearly just wants to get his revenge on those that claim disability benefits. Most of whom are US veterans who served their country so that people like him can continue to enjoy their freedom and have a career. I hope he gets tinnitus himself! Then we can take turns and blast him with noises, all 20,000 of us. No worries, it will be matched to his tinnitus pitch, so it will be safe and scientific... People like him is what's wrong with the world!

      How about some support, and some real research? With funding from the Pentagon? If they want to get these people off of benefits, they should do more to develop real, objective measurement techniques, and strive to develop a cure. Not just sweep them under the carpet as unworthy expendables.

      And what about those of us who get scammed by clowns that offer miracle treatments for tinnitus? Who should we complain to? What is Mr. Turner going to do about that?...
       
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    13. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      You may know more about his secret agenda than me, but the text you quoted simply states that he said "This test is open to abuse by those wishing to fraudulently claim disability benefit", which seems to indicate he is targeting abuse.
      Remember that abuse contributes to making us legitimate sufferers not receive the appropriate care. It's because of abuse that we are looked at with suspicion when we come in saying "I can't work! This noise is killing me! I can't concentrate!". Cutting down on abuse doesn't seem like a bad idea.
       
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    14. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      Yes, but who is to say who is abusing the system and who is not?

      If given a choice between disability benefits and a cure, I like to think that everyone would chose the latter.

      This concern definitely raises the need for an objective way of measuring tinnitus.
       
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    15. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Well that is exactly what this guy is trying to figure out isn't it? It seems reasonable to explore ideas that help weed out the abusers from real sufferers. You could clearly argue about his implementation (i.e. startling people with loud sounds), but the high level goal seems reasonable to me.

      It's not mutually exclusive with researching a cure: the efforts to find a cure aren't halted because some guys work on ways to detect abuse. I'd also prefer a cure, but in the absence of it, I'd like it if legit sufferers could get help to go through life with such condition.
       
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    16. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I don't think an objective measure could achieve anything more than say "yes that part of the brain lights up when the dye passes through (or whatever)" but then you move on to measuring the extent of disability from individual to individual. We all know our own perception of it, but how many of us have experienced not being taken very seriously by Care-givers? Then add in a bureaucratic disincentive to recognizing the problem exists in different degrees for different people (he can work, why can't you? Your objective results are the same). Its akin to scoring chronic pain syndromes. Some will always cope differently to others, whether it be from psychological mechanisms, or subtle tinnitus sound perceptual differences. I may manifest the same brain changes as Greg, but he may perceive it as a screeeech to my simple screech. Objective measures of perception won't be coming anytime soon and yet that is precisely what we need (Questionnaires aren't really objective).

      An efficient and cost-effective model of objective baseline proof for the existence of tinnitus would be a good starting point though. A brain change that isn't detected in non-sufferers for example. @GregCA is the link-master. You seen anything like this?
       
    17. Dr. Jay Hobbs
      Studious

      Dr. Jay Hobbs Member Benefactor

      Location:
      central valley California
      Tinnitus Since:
      Blessed to not have...often
      Cause of Tinnitus:
      NA
      This is actually how they "measure" tinnitus in animal models. It is know as "
      Gap-Prepulse Inhibition of the Acoustic Startle Reflex." I am suspicious that they are even making the correct conclusion from this response. Apparently I am not the only one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4411996/

      My focus is getting folks better, but I think you are on to something:
      On the other hand, EEG, especially QUANTITATIVE EEG (qEEG) does seem to be effective at showing objective signs of tinnitus and its distress.
      Can EEG Measure Tinnitus? [CR Neuromodulation]...


      Here are the notes from the video:
      So what can we USE, NOW, from this study?
      If you need to have HARD data that demonstrates you truly have severe, disabling tinnitus, qEEG with LORETA analysis may be able to do this for you. If you want further info. On referral to a qEEG provider, check with brainsinternational.com
      Future Applications:
      What if we could use the consumer-friendly and AFFORDABLE EEG units to help Diagnose helpful specifics of YOUR INDIVIDUAL Tinnitus? What if this could help you determine, WITH CLARITY, how well you would respond to a PARTICULAR tinnitus treatment.
      What if TREATMENTS, or self-help therapies, could automatically change, or RECOMMEND changes, to your therapy for maximum tinnitus reduction, BASED ON real-time measurements in your brain activity?

      Research and Reference:
      “Functional Brain Imaging for Tinnitus”: https://www.youtube.com/watch?v=eLfJg...
      Fundamentals of EEG Measurement, 2002: http://www.measurement.sk/2002/S2/Tep...
      Number of neurons in human brain, 2009. https://www.ncbi.nlm.nih.gov/pubmed/1...
      For referral to a qEEG provider: http://www.brainsinternational.com
      Emotiv EPOCH - consumer-friendly EEG headset: https://www.emotiv.com/epoc/
      Cognionics - Easy-to-use accurately EEG headset: http://www.cognionics.com/images/docs...
       
      • Informative Informative x 4
    18. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I have but I can't find the link anymore (looks like I will be demoted from my link-master status!) - it was a youtube video that showed exactly what you describe: through fMRI you could tell T patients apart from non T patients. It was the first time that we could fairly reliably tell them apart without actually requiring any information from the patient at all.

      But that was the extent of it: I don't recall it being granular enough to detect intensity, let alone frequencies.

      The other thing I recall is that it wasn't "bleeding edge technology": that video was made around 2012 IIRC.
       
    19. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      End results don't necessarily justify the means. But yes, it would be good to have a method for weeding out the abusers.

      Agreed!

      Is GPIAS the new normative method for detecting tinnitus in animals?

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4411996/#S7title

      So in regular gap detection they play two bands of background noise, one at 500 Hz and another at 4 kHz. They play it at 65 dB SPL. How broad are these bands? Within this background noise, there are 50 ms gaps of silence? How many do they embed in a second? Then they play a broadband 20 to 20 kHz noise at 105 dB for 50 ms. The expectation is that a tinnitus patient will not get startled by this? Or it has nothing to do with startle reflex?

      In prepulse gap detection they don't play any background noise? What does the startle sound consist of? Tinnitus matched sound wave? How intense or loud is it?

      I don't know if you are the right person to ask this, I'm just trying to understand this protocol.

      From one of the referenced articles:
      https://www.ncbi.nlm.nih.gov/pubmed/25822647/

      Yes, EEG is an interesting technology that we should explore. The fact that there are now consumer grade EEG wearable devices available is very promising development. This could help provide the "objective baseline proof for the existence of tinnitus" that @PaulBe called for.

      There are a number of problems in tinnitus research that need to be overcome. One of them is the comparability between different studies. From the linked articles above, one can read following.

      1. There is lack of common standard to induce tinnitus in animals.
      2. There is lack of common standard to objectively measure tinnitus in animals.

      They need to have a common standard for this. It would make comparisons of studies much easier.

      I am pretty sure that my particular tinnitus was caused by a sudden, very loud, pure tone quality noise presented in both ears but the more damaged ear had longer exposure time. I would still call it unilateral exposure. They are onto something here.
       
    20. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      Could it be the video version of this image?

      image003.gif

      https://www.masseyeandear.org/research/otolaryngology/investigators/laboratories/tinnitus
       
    21. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
    22. attheedgeofscience
      No Mood

      attheedgeofscience Member Podcast Patron Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      Unknown (medication, head injury)
      Regarding objective measurements of tinnitus, a number of articles from the Frontiers Research Topic actually address the issue both directly and indirectly:
      I have personally ensured the distribution of two of the articles ("metabolic changes" and "alterations in brain structures") for that same reason.
       
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    23. Dr. Jay Hobbs
      Studious

      Dr. Jay Hobbs Member Benefactor

      Location:
      central valley California
      Tinnitus Since:
      Blessed to not have...often
      Cause of Tinnitus:
      NA
      Good analysis @Samir .
      The startle sound is matched to the tinnitus. With the "prepulse gap detection," they are presented with a constant tinnitus-matched tone, which is removed briefly. If your tinnitus persists, you don't notice the matched tone being absent. A variation of this is where they have a constant sound, then a gap (no sound) just before the startle sound. The expectation is that those WITHOUT tinnitus will have LESS response startle. The idea, I believe, is that the break in sound is a more subtle warning, so the startle sound is less shocking.
      You ask many carefully-considered questions. Unfortunately, I don't know many of the answers with this research.
      The protocols are a bit difficult to understand. I became a bit disillusioned when my understanding seemed to reveal some likely gaps in their ability to determine the difference between a lack of response due to tinnitus vs.a lack of response due to hearing loss.
      This is VERY hard research to do. I applaud them for their efforts.
       
    24. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
    25. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      I also found this interesting news piece the other day.

      How one Parkinson’s patient drove a groundbreaking research effort

      https://www.ibm.com/thought-leadership/passion-projects/parkinsons-watson-drug-discovery/

      Once we have a an objective measurements for tinnitus, and enough data, we might be able to do the same for tinnitus.

      On objective and remote monitoring of Parkinson's:

      Objective and quantitative assessment of motor function in Parkinson’s disease—from the perspective of practical applications

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4791329/

      I wish something like this was possible for tinnitus patients.
       
    26. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      "Connectivity of precuneus to the default mode and dorsal attention networks: A possible invariant marker of long-term tinnitus"

      http://www.sciencedirect.com/science/article/pii/S2213158217301808?via=ihub

      Forum thread about it:
      https://www.tinnitustalk.com/thread...-at-attention-less-at-rest-study-finds.23537/

      There you go! One possible marker for measuring tinnitus? I would not exclude Caudate nucleus or the Putamen either. These are all good targets for measuring changes in the brain that relate to tinnitus.

      A patient named Louis Lowry was cured of tinnitus after having a stroke that damaged his Caudate nucleus and Putamen.

      https://instituteforhearingperformance.com/tinnitus-as-a-problem-of-the-brain/
       
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    27. Samir
      Obedient

      Samir Manager Staff Benefactor

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      Understanding tinnitus using Google DeepMind and Big Data?

      This is just a little something I found on the website of Plextek, the company that made those headphones that continuously monitor your ABR levels.

      ...
      ...
      http://www.plextek.com/blog/protecting-against-tinnitus-with-big-data/
       
    28. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
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    29. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
    30. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Uncertain, now very somatic, started with noise?
      I am very sceptical that there will be objective ways to quantify tinnitus. I am actually sceptical when I read the term tinnitus and have in mind how many different manifestations there are. I recently spoke to a man about somatic tinnitus who said that if he does not move, he does not have tinnitus, but even chewing, swallowing, frowning, speaking etc. is accompanied by a hissing in his ear. Tinnitus is often not this beeping in the ear with e.g. 11380Hz as many people imagine it. Furthermore: Many tinnitus sufferers have strong fluctuations in the severity of their symptoms.
      I think a quantification of measured brain activity is a completely wrong approach.
       
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