Help Needed for Tinnitus Guide Project

Discussion in 'Awareness & Fundraising' started by Markku, May 4, 2018.

    1. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      tinnitus-guide.png

      We are looking for volunteers to help out with a key Tinnitus Talk project. The aim of the project is to produce a high quality, evidence-based Tinnitus Guide, which would serve as a source of support and information for people seeking help. Through the guide we hope to counter any online misinformation and provide reliable, factual and comprehensive advice and guidance.

      Of particular use for this project are research and writing skills. Any relevant academic background, such as medicine, biochemistry, neurology, psychology, etc. would also be very welcome.

      The project is expected to run for another 2-3 months, so we ask that any contributors remain involved for at least that period of time. You should be able to spend about 4 hours per week at minimum.

      If you are interested, please leave a message below or contact us directly.

      Please find below the chapter list to get a sense of the envisaged content for the guide.
       

      Attached Files:

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    2. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Markku I would like to be involved with the somatosensory and physical aspects of tinnitus. Under the thread 'Somatic Tinnitus, an Independent Form of Tinnitus - or Not?' I mentioned that percentages of cause may be helpful to include in this study.

      A condition like with the sternocleidomastoid muscle: can create headaches, pain to the head along the occiput, facial pain which can imitate trigeminal neuralgia, jaw pain and tension, dizziness, brain fog, blurry vision, eye pain feeling like sinusitis, reddening of the eye, sore throat at the back of the tongue, and even hearing loss. This muscle can also create cracking sounds, but this is usually associated with the masseter muscle that can imitate an ear ache or itch in the external ear canal. Since all this can also relate to other conditions, I think that cause percentages would be helpful to use.
       
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    3. AUTHOR
      AUTHOR
      Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Thank you. Sending you a message now.
       
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    4. David077
      Creative

      David077 Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      stress, benzo/clonozepam + clonidine, maybe infection
      @Markku, although my academic background is in software, I have a middle knowledge in DNA genealogy, with this knowledge I believe that I can research common genetic mutation(s) between people with tinnitus (of course if they do exist and detectable) , then determine what mechanisms in the body is affected by these genes and TRY to understand what was the trigger that caused malfunction on these mechanisms.

      I have no any basic knowledge in the main professions (medicine, biochemistry, neurology, psychology), but with logical thinking and reconciling things I believe that I can bring a tiny help in your project.

      Good luck!
       
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    5. dingaling
      Relaxed

      dingaling Member

      Location:
      London UK
      Tinnitus Since:
      2016
      Cause of Tinnitus:
      unknown, probably loud music
      I am interested in the hyperacusis topic and treat children including use of fear hierarchy charts. What would I need to do?
       
    6. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      To the team;

      My tinnitus is severe, but my progressive whiplash medical conditions are of major concern. I'm starting to get increased painful facial paralysis. I guess I'm fooling myself to think that I can help. My writing skills are becoming limited. If you wish, you can delete my posts under this thread. I think that many others could write a "Physical Links" chapter. I'm so sorry.
       
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    7. Liam_Cairns

      Liam_Cairns Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Originally loud Music and was worsened by Micro-suction
      I could provide info relating to pharmacological treatment options, I know a fair bit about everything from antidepressants and antipsychotics to benzos and even stimulants, however my knowledge on antiepileptics is limited. My backround is that I have done several psychology units relating to psychopharmacology and I aim to work in drug development if being a clinical psych doesn't work out. Lemme know if this is enough of a background.
       
    8. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Greg Sacramento,
      Hey no worries, your health comes first and hope you feel better soon.
      Love glynis x
       
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    9. krispin
      Woot

      krispin Member Benefactor

      Location:
      Vancouver
      Tinnitus Since:
      forever
      Cause of Tinnitus:
      wayward youth
      Good afternoon good people of the ring, or should I say Fellowship of the Ring(ing). :D

      Would be interested in helping out. I love writing, but am not a medical professional. Have had tinnitus for longer than I can remember, so lets say I am experienced. I have research skills, AND I think I still have access to research journals (as long as my "associate" status at UVic is still in place)

      Cheers,
      Krispin
       
      • Agree Agree x 1
    10. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      I feel sorry to be useless because I have none of the skills mentioned above. But I was thinking about @Michael Leigh and @Bill Bauer. They kindly reply to every newbee in this forum and give their advices (see their respective links). I must admit I have not read all their posts but I guess we can pick (with their permission) some parts of their texts to write this guide.
       
    11. PaulaO

      PaulaO Member

      Location:
      western NC
      Tinnitus Since:
      1983
      Cause of Tinnitus:
      unknown
      I am a writer. I focus now on fiction but have written non-fiction in the past. I can at the least assist with editing.
       
      • Helpful Helpful x 1
    12. gillme
      Dancing

      gillme Member Podcast Patron Benefactor

      Location:
      Berlin
      Tinnitus Since:
      01/2009
      Cause of Tinnitus:
      Unknown
      Hi there!

      I would be happy to help contribute with research/editing/writing for 17/18/19. Unfortunately I do not have the required academic background however I have had tinnitus 8+ years and have benefited from CBT treatment and just recently finished partaking in a survey to measure the outcomes of psychology based treatments. To add, I'm currently undergoing a Masters, and have an English degree so I am well capable of formulating some academic research!

      Please feel free to let me know if I can help in any way at all!
       
    13. Cheryl K

      Cheryl K Member

      Tinnitus Since:
      1/4/16
      Cause of Tinnitus:
      Unknown. They tell me hearing loss
      Hi,

      I would like to be involved in this research. I am a psychotherapist who specializes in CBT (Cognitive Behavior Therapy) and Mindfulness. I also have tinnitus and have seen a huge decrease in the sound of my tinnitus as I have utilized these strategies over the past 2 years since being diagnosed.
       
      • Like Like x 1
    14. SugarMagnolia
      Jaded

      SugarMagnolia Member Benefactor

      Location:
      USA
      Tinnitus Since:
      02/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I look forward to a Tinnitus Guide because I often find it frustrating that I find only anecdotal answers, not medical/scientific ones.

      In particular, I hope the guide will answer these questions:

      Are ears that have been damaged by an acoustic trauma more susceptible to further damage than ears not damaged by an acoustic trauma?

      If yes, what is the decibel level that is safe for ears damaged by an acoustic trauma?
       
      • Good Question Good Question x 3
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    15. AUTHOR
      AUTHOR
      Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Hi there, thank you very much for offering your skills! It cannot be stated enough how difficult it is to find volunteers, so we really appreciate the help.

      @Hazel, our wonderful project manager and editor, will be in touch soon.

      And everyone else reading this, if you think you fit the bill and can dedicate the time outlined in the first post, we encourage you to participate in this project. You will probably learn new things yourself, and make some friends in the process.

      Thanks!
       
    16. Jen Mylo

      Jen Mylo Member

      Location:
      Portland, OR
      Tinnitus Since:
      06/1980
      Cause of Tinnitus:
      Unknown
      I'd be willing to help. I have a master's in acupuncture, which seems unrelated, but we had to do a lot of western biomed classes to graduate and pass the board exams. I've had tinnitus and hyperacusis since I was a kid.

      Reactive tinnitus that would go away for the first 38 years, then chronic constant tinnitus that hasn't stopped since 2010 (audiologists/ENTs unclear on why the sudden change since I don't have hearing loss, but the timing was coincidentally at the same time I had antibiotics for two successive ear infections, so that's my guess).

      I'm good with research, though I don't currently have an academic subscription to the usual databases, so I'd be limited to publicly available resources unless someone would be willing to pull up and share articles housed in proprietary dbs if needed.

      Happy to research/write/edit on any of the topics in the table of contents.
       
    17. ChrisD

      ChrisD Member

      Tinnitus Since:
      06/2013
      Well I've done my best to use the 'contact us directly' link but either it's duff, or I am.

      I'm interested in helping with work on this guide. First degree was BSc psychology, PhD in psychopharmacology, so might be of some use.
       
    18. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      @SugarMagnolia

      Tinnitus is a complex condition that affects each person differently. Therefore, if you are seeking medical and scientific based answers to your questions like the above, I believe you will not find them. Most of the answers to your questions on tinnitus, will be found in this forum and by asking people that have lived with the condition for some period of time. Typically veterans such as @fishbone. Whose knowledge and expertise on tinnitus, I believe will blow any medical and scientific data out of the water. In my opinion, the majority of the medical and scientific material on tinnitus is compiled by people that have never experienced it and thus, have no idea what it's like to live with.

      The answer to your questions above you will find in some of my posts on my "Started Threads". Acoustic trauma will affect each person differently as some people will also experience hyperacusis and some won't. Generally, most people can make a full recovery although some may need specialist treatment with a Hearing Therapist or Audiologist, that practices the treatment and management of tinnitus and hyperacusis. Habituation can take up to 18 months. The auditory system is usually more sensitive to sound but that doesn't mean one should become reliant on using hearing protection as some people do. Overuse can easily cause more harm than good. My advice is not to use headphones if one has "Acoustic trauma" and be careful of loud sounds at clubs and the cinema by using noise reducing earplugs.

      My tinnitus was caused by acoustic trauma and I had severe hyperacusis. The hyperacusis has been completely cured for 20 years. Normal everyday sounds do not affect me in the slightest and I only use hearing protection when using: power tools, petrol lawn mower etc . Please seek the help of Newbies, veterans and those seasoned to tinnitus for answers to your questions as I believe you'll be much better served.

      All the best
      Michael
       
      Last edited: May 14, 2018
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    19. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      My apologies, but I am still struggling with ill health.
       
      • Hug Hug x 1
    20. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      Sorry to hear that you are not feeling well @DebInAustralia and hope you start to feel better soon.
      All the best
      Michael
       
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    21. Eileen Fehily

      Eileen Fehily Member

      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      sudden single sided hearing loss
      I have experienced tinnitus since suddenly losing the hearing in my left ear about 16 months ago.

      I've worked in business communications for 30+ years so can present written material clearly.

      A couple of years ago I completed an Open University degree is Psychology so I'm familiar with academic research practice and output.

      I'd be happy to help.
       
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    22. Mike Gaddis

      Mike Gaddis Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      antibiotics
      My tinnitus started around 2000 after having had a severe ear infection and getting strong antibiotic injection to cure it. I have tried a couple of market treatments from my audiologist. I have a MA in education and have done educational grant writing, so I think I could help in the development of the guide. I am willing to help in any way possible since I believe there are many misconceptions about tinnitus.
       
    23. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Hi Markku,

      How do we define "evidence-based"? So many studies seem to have conflicting end results. ATEOS seems to have the best evidence sources from my limited reading since participating here. But my therapy is all do it yourself and adjusted to my own situation with dealing with tinnitus. And so many (not here) have tried to discredit things that worked for me - in particular - specific hypnosis to deal with the noise in my brain. But there isn't any evidence to back this up for your project.

      My only asset (I have my college degrees in law) is experience with tinnitus in many different situations and with different people in different walks of life.

      How do we reach tinnitus sufferers before they reach that "point" of desperation?

      I would be glad to add to anyone's work with this if it can be of help.
       
      • Good Question Good Question x 2
    24. Robert W

      Robert W Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown
      I am a retired Assistant Research Professor from the field of neuroscience and would be willing to assist in areas like “How to Spot Pseudoscience" and strength of evidence for claimed cures.
       
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    25. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Good question. I put together the attached document outlining general principles for the guide, which should answer your question. If you feel there are still some ambiguities though, do let me know! I'm happy to give this more thought and adapt the principles further if needed.

      I agree, it's very tricky to present the facts accurately and clearly, and often there are no clear answers. This just goes to show that it's a complex endeavour we're trying to accomplish here. It will take A LOT of background research, review, rewriting, etc. before we get it right (and even then we may never get it completely right, but we'll do our best).
       

      Attached Files:

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    26. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Thank you Hazel. I am reading the Guiding Principles and taking a few notes for further discussion. Seems like you have covered a lot of the problems and how to respond/debate than let the reader formulate their own feelings.

      I am excited to see this being taken to the next level here! I think of one poster on support @quietatnight (louie) and the horrible difficulty he is facing with his hyperacusis and tinnitus after an MRI. What is the answer or right approach for him to take? What type of specialist could he be referred to?

      People are so understandably despondent. This is a very difficult project that in the end will certainly help.

      Anyways, great start and thanks again for the guide line link.
       
      • Like Like x 1
    27. Nantie

      Nantie Member

      Tinnitus Since:
      2010
      Cause of Tinnitus:
      Unknown
      Hi there. I'm a demographer (ex professor of) with lots of research and writing experience - and Tinnitus. I'd be particularly interested in doing some demographic analysis - it might come under point 5 'Tinnitus in numbers'?
       
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    28. Robert W

      Robert W Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown
      The term is self-defining. Conflicting results commonly reflect differences in the way studies are conducted. These differences often result in differences in study structure, but sometimes may not necessarily reflect differences in the validity of each study, where all valid studies yield evidence.

      The evidence-based conclusion in this regard is contradictory, warranting further, synchronized research.

      The project's goal appears to remove misinformation, which is a reached problematic proportions in all aspects of life - none more exemplary than that on climate change.
       
      • Like Like x 1
    29. Lachlan O

      Lachlan O Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Loud music
      Hi Markku,

      Couldn't seem to send you a message, I don't use this platform often. I'd be interested in getting involved - I have a background in Psychology and Statistics, so have some relevant academic knowledge and research skills. I'd like some more information before committing, but I love the idea of the project and think it's a great cause which could be very useful and enlightening to a lot of people.

      Hope to be in touch.
       
      • Like Like x 1
    30. coldroses
      Sleepy

      coldroses Member

      Tinnitus Since:
      February 2015
      Cause of Tinnitus:
      Neck injury from pedestrian accident with car
      Hi, I just got the email about this. I am a lawyer who is also currently finishing a biomedical science degree and have had moderate to severe tinnitus for four years now. I would really like to be involved in this project as I potentially have a lot to offer, both regarding the subjective experience of tinnitus/coping strategies and also possibly the chapter on head/neck-related tinnitus - I have learned a tremendous amount about tinnitus of this type through my own experience. I can confidently interpret and explain scientific publications as well, which is always helpful!

      I am, however, about to embark on end-of-semester exams so would be unable to participate until mid-June. If this is okay, please feel free to get in touch.
       
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