Act Now What Do Doctors Need to Understand About Tinnitus?

Discussion in 'Support' started by Hazel, Sep 25, 2020.

    1. 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)
      Hi there!

      We've all been there. You develop tinnitus and it turns your world upside down. Surely, your doctor should be able to help? Apparently not... How about a specialist then, like an ENT or audiologist? Unfortunately, even those often turn out to know next to nothing about tinnitus.

      Therefore, we want to create some resources to educate healthcare professionals about tinnitus. We'll start by creating a special Tinnitus Talk Podcast episode; an episode that you can send to your doctor for them to learn more about the condition.

      To create the best possible educational resource, we need your input! So please answer this question for us:

      What’s the number one thing you wished your doctor/ENT/audiologist had understood about tinnitus when you asked for their help?

      Let your voices be heard! :)
       
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    2. GBB

      GBB Member

      Location:
      NYC
      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Microsuction / Additional Acoustic Trauma in Close Proximity
      1) It is not just a gentle ringing - it can be a suicide inducing cacophony that makes every minute a struggle.

      2) Because of the reality of 1 - I would rather they prescribe me oral steroids / injections or anything else that can help me escape while the therapeutic window is still open. Sometimes putting that cognitive behavioral therapy pamphlet in someone's hand who is asking for prednisone, is a death sentence.
       
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    3. Diesel

      Diesel Member Benefactor

      Location:
      Ohio
      Tinnitus Since:
      1-2019
      Cause of Tinnitus:
      20+ Years of Live Music, Motorcycles, and Power Tools
      1. Pain happens with hyperacusis.
      2. Hyperacusis doesnt just "go away"
      3. You can't really just go on and "live your life, just wear earplugs."
       
      • Agree Agree x 17
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    4. frpp

      frpp Member

      Tinnitus Since:
      2010
      Cause of Tinnitus:
      Tmj, Nihl, ototoxic drugs, nerve/ vascular issues
      If you don't know what pulsatile tinnitus or hyperacusis is, please take a second to think who might and refer me out, don't just tell me to "buy a fan".
       
      • Agree Agree x 4
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    5. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      1. I wish they knew more about hyperacusis/noxacusis and kept up with the research about it instead of being stuck in the Jastreboff microcosmos from the 90's.
      2. I wish they knew more about tinnitus and kept up with the research about it instead of being stuck in the Jastreboff microcosmos from the 90's.
       
      • Agree Agree x 12
    6. Emgee

      Emgee Member Podcast Patron Benefactor

      Location:
      United States
      Tinnitus Since:
      03/2020
      Cause of Tinnitus:
      Modern Society = Too Loud
      1. All audiograms should be extended versions.
      2. Hearing tests such as tympanometry, acoustic reflex, ABR, LDL, OAE, etc. are probably not a good idea for people who just endured an acoustic trauma.
      3. Stop pushing the narrative that’s it all psychological. It’s not just a feedback loop. Tinnitus can be absolutely debilitating.
       
      • Agree Agree x 12
      • Like Like x 7
    7. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      1) Extended audiograms should be routine.
      They can help diagnose if tinnitus is cochlear in origin vs somatic causes. They will also be crucial when regenerative drugs come out.

      2) Behavior therapy / ACT / CBT is not a treatment.
      You wouldn't send someone with Multiple Sclerosis to a psychiatrist as a "treatment" and it's insulting to tinnitus patients because it implies their plight is primarily psychological rather than a normal human reaction to sound torture.

      3) Please take the time to get educated about new research / treatments in clinical trials.
      Because your patients want to know about what the future holds for them.
       
      • Agree Agree x 26
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    8. Brians81
      Gloomy

      Brians81 Member

      Location:
      Indiana
      Tinnitus Since:
      April 23 2020
      Cause of Tinnitus:
      Noise induce trauma
      I don't even know what to say to an ENT about tinnitus.

      Maybe I would be asking for better treatments?

      I guess all I want to see is a way to reduce the sound that I'm hearing and make it bearable so I can live a normal life --- with or without hearing aids :cool:
       
      • Like Like x 2
    9. Zugzug

      Zugzug Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Likely Autoimmune Inner Ear Disease; Sjogren's Syndrome
      1. The difference between noise sensitivity and true hyperacusis:
      The latter is rare, serious, and merits throwing every supplement and drug on Earth at in an effort to stop it. The former may fade with time and habituation.

      2. Treatment for the condition is treatment for the depression:
      You cannot have LDLs in the <30 dB range and be happy. You only become happy when the LDLs go up. Try medications, steroids, anything at all to get there.

      3. Patients often avoid loud tests for rational reasons:
      Sometimes ENTs recommend MRIs just to pin it on the patient, as if the patient isn't trying their hardest and the ball is in their court. Meanwhile, the patient with hyperacusis is intentionally avoiding the MRI if their condition doesn't present in a way that imaging is likely to help. This is really important, especially when you consider disability approval, where someone may not understand that "laziness" or having a condition "too mild to care" is not the reason why the person is avoiding the test. Of course, no one wants to secretly have an acoustic neuroma. At the same rate, no one wants to permanently worsen their condition (with high probability) if their medical presentation does not warrant the concern. Most ENTs don't think about the risks involve with these tests.

      4. Rational versus irrational phonophobia:
      I see a lot of "patients need reassurance." Patients are not stupid. If we go outside and a 50 dB noise gives us excruciating symptoms for the next month, the problem wasn't that we "didn't understand" that the noise couldn't harm us. The problem was that hyperacusis is so rare that sweeping generalizations like "noises under 80 dB can't harm you" are incorrect. Instead, ENTs should recommend people constantly test low level noises to see what makes them worse. Then recommend low level noises in safe environments.

      5. Prednisone is nothing compared to hyperacusis:
      Yes, prednisone is a serious drug, and a very serious drug long-term. It is not serious as a few week trial. No one who experiences anything that can resemble a trauma should struggle to get steroids.
       
      • Agree Agree x 8
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    10. Pitseleh

      Pitseleh Member

      Location:
      France
      Tinnitus Since:
      2007
      Cause of Tinnitus:
      Unknown
      1) Try things, don't let your patients walk away without offering them something practical to try.

      2) Stay updated with research.

      3) Tinnitus can be loud. Really loud.

      4) It's not a question of "not paying attention to the noise", research knows now all this is happening at an unconscious level. Ignoring the sound is not physically possible with tinnitus, it's the brain doing its thing.
       
      • Agree Agree x 7
      • Helpful Helpful x 2
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    11. aot
      Bookworm

      aot Member Benefactor Hall of Fame

      Location:
      USA
      Tinnitus Since:
      2016. Worsened 11/2019.
      Cause of Tinnitus:
      Probably sound induced, worsened due to noise expouse + flu.
      That it can get worse.
       
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    12. Kendra

      Kendra Member

      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      SSNHL/ Acoustic Trauma
      Sudden hearing loss 10 dB and up, even though it’s not the clinical 30 dB, should still be given a round of prednisone before the window is closed for regaining that lost hearing.
       
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    13. Thuan

      Thuan Member

      Location:
      California
      Tinnitus Since:
      05/2018
      Cause of Tinnitus:
      Ear infection
      @Hazel I've been busy lately and haven't been checking on many posts.

      My primary concern for ENTs is:

      1) Ear symptoms are not just an "annoyance" but much more serious. It drives me nuts how ignorant they are to our symptom's severity. At the least, it is extremely disruptive to our everyday life including our workplace productivity. At the worst, it drives us to the looney bin. It is debilitating to our employment and sanity. This is way beyond the level of "annoyance" that can be shrugged off.

      My secondary concern for ENTs is:

      2) I wish they understood that our ears are no longer healthy even if the audiogram and tympanogram tests show otherwise. The very fact that we have tinnitus, hyperacusis and other symptoms means our ears are NOT healthy. PLEASE stop saying our ears are healthy when we are suffering so much from ear symptoms.

      I also agree with @FGG's points.
       
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    14. serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      This is more oriented towards hyperacusis/noxacusis:

      Please refrain from giving utterly meaningless advice such as 'well, just make sure to avoid loud places' - the whole point is that it's everyday noises that are giving me grief - do you think I'm just going to happily waltz into a concert when a coffee shop is pushing my noise tolerance lmao?

      I wish more clinicians would keep up with basic research or undertake some form of CPD - there's been increasing research on noxacusis indicating that it has a very real underlying biological mechanism. Please recognise that it's not solely psychological.
       
      • Agree Agree x 4
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    15. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      A few months after my tinnitus started I was in a highly renowned tinnitus clinic in Germany. All the experts there did not know that somatic tinnitus existed, and all my explanations were smiled at and not taken seriously. I am sure that my tinnitus is only a subset of the sound I can produce somatically. By moving the scalp, by applying pressure to the head areas supplied by the temporal nerve, etc.

      My wish would be that much more space would be given to the topic of somatic influence.
       
      • Agree Agree x 2
    16. jay777

      jay777 Member

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      benzo/ headphones
      IT KILLS.
       
      • Agree Agree x 13
    17. Ginagg738
      Hurting

      Ginagg738 Member

      Tinnitus Since:
      January 9, 2010
      Cause of Tinnitus:
      Side affects from inner ear surgery
      To just FREAKING LISTEN TO THEIR PATIENT!!! This crap is real. It ain't no joke and it is freaking destroying good people's lives and the doctors, medical boards, attorneys, etc, JUST DON'T CARE. PERIOD. That's the reason I will not give up on my fight with these non caring people.
       
      • Agree Agree x 11
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    18. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      Most importantly, being able to offer both hope (through knowledge of current research) and support through highly cultivated counselling skills.
       
      • Agree Agree x 5
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    19. Jrblovsky

      Jrblovsky Member

      Tinnitus Since:
      Christmas 2019
      Cause of Tinnitus:
      Gunfire (Maybe) & Menieres
      I wish doctors would understand how truly debilitating this shit is. I have had to give up my career due to it. I have no quiet or relaxation time ever. I also have to sleep with a super loud box fan a foot from my head to get to sleep. The noise is ruining my life one day at a time and I'm so sad that it may take suicide to get relief. I don't want to go and leave my family but I am tortured 24/7 with screaming loud noise. Please, please find a cure for this shit.
       
      • Hug Hug x 8
      • Agree Agree x 5
    20. lis

      lis Member

      Tinnitus Since:
      severe 2020
      Cause of Tinnitus:
      acoustic trauma
      1) Do not miss the window of opportunity for steroids post acoustic trauma! It is your responsibility to offer your patient the chance to not live with deathly ringing/distortions/pain for life.

      2) Educate yourself about clinical trials and regenerative medicine. Otherwise you'll be misinforming your patient that there's really no hope and nothing else available but CBT.

      3) When tinnitus is severe, it is not ignorable. It kills. Take it seriously and if you don't understand the mechanisms of auditory trauma - refer out to an otoneurologist that does.

      4) Chiropractors and TMJ specialists can cure some patients with a somatic component.
       
      • Agree Agree x 10
    21. Michael01
      Frustrated

      Michael01 Member

      Location:
      Grafton,NSW,Australia.
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown
      Listen to the damn patient. Sending them away with nowhere to go is unforgivable, as my last ENT did to me.
       
      • Agree Agree x 13
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      • Hug Hug x 1
    22. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Number 2 especially.
       

      Attached Files:

      • Agree Agree x 5
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    23. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      What can they do? There is no cure or treatment. You just have to get used to it or try a hearing aid.
       
    24. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      I couldn't get prednisone at all. From Doctors or ENTs.

      I think ENTs should be forced to take a workshop or courses that consist of the information here.

      Maybe I am being unrealistic but I think it's pretty pathetic that many people here have some grasp of tinnitus even if it is not always scientifically validated or universally accepted. But, there's enough knowledge that ENTs don't seem to know or acknowledge to patients.

      I think they should at least have as much info from here addressed to them. Some minimum. It is, after all, body parts and related conditions in their specific health field and anatomy.

      Or am I expecting too much?
       
      • Agree Agree x 5
    25. 100Hz

      100Hz Member Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Noise exposure
      I know doctors can't do much, but I think there's definitely some things they should stop doing / recommending.

      Stop assuming that it's depression that's causing tinnitus and noxacusis. I was happy up to the second I got my noxacusis and tinnitus. It's only after the sensitivity and pain begins plus more importantly the slow realization of what has actually happened to your life that the secondary effects begin. (Isolation, fear, loneliness, depression, anxiety etc).

      Learn to understand just how sensitive and easily triggered the condition is. I've been to doctors in excruciating pain only for them to want to 'quickly microsuction my ear' to check the eardrum. Some of the hearing tests, especially LDL can be disastrous for new sufferers who are scared out of their mind and don't know any better yet. This test does nothing of any value, it's the equivalent of hitting your femur with a hammer until it breaks to find out how much it can take. Not to mention MRIs. Try and make the above common knowledge among the medical profession so that the same mistakes are not being repeated over and over by every doctor.

      Try and read some research, don't be dismissive of it when patients talk about it. Also read some patient stories to understand the similarities within the individual cases of the grave situations we are in.

      Prescribe prednisone asap after tinnitus begins, after acoustic shocks, and after sudden hearing loss etc.
       
      • Agree Agree x 7
    26. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      This article contain some of what ER and general practice doctors should know about tinnitus, so a medical team can be established. The article does not contain enough about the jaw/teeth, TMJ, whiplash, hypertension and most of all drugs that should not be used with tinnitus and how long a taper should be.

      If your doctor does not take the time to check if a drug can cause tinnitus, then find a new doctor. If possible, write everything down that you know about your pre tinnitus history - just like we do here - and give this to your GP. Never mention that you read this or that on the internet, unless it's about drugs that are not friendly to tinnitus.

      MRI examination can be a problem for some and CTs have radiation - more concern is having multiple CTs. With some medical concerns, ultrasounds may be helpful, but do your research on this.

      Depending on what is expected as cause, if possible it may be better to rest your ears from multiple hearing exams other than an audiogram. Ears should be cleaned manually or bulb syringe after using drops several days before.

      If you smoke, and admit to being a heavy smoker, many doctors will get turned off.

      https://cdn.intechopen.com/pdfs/25108/InTech-Evaluation_of_tinnitus_in_the_emergency_department.pdf
       
      • Like Like x 1
    27. Jack23

      Jack23 Member

      Tinnitus Since:
      1 month
      Cause of Tinnitus:
      Noise, medication
      I wish they knew more about the drugs they prescribe in unnecessary cases. My ENT doctor gave me my tinnitus from ototoxic antibiotic. I didn't even had infection, also he directed me to use in wrong way which is through nose. Later I find out it's only for outer ear appliance.
       
      • Agree Agree x 4
      • Hug Hug x 1
    28. Michael01
      Frustrated

      Michael01 Member

      Location:
      Grafton,NSW,Australia.
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown
      And that is exactly where they can help. Be up-to date on the latest hearing aids that mask tinnitus. Stay current on the research and at least try to advise on what's best and what is not, in terms of relief.

      In my case I had to run around Northern NSW looking for something that worked, and I only found the hearing aids by accident, even if they only worked for a short time.

      There's some very nasty scam devices floating around, if you aren't careful.
       
    29. MBH

      MBH Member

      Location:
      Upstate NY
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Overloaded stress
      Doctors should not make light of tinnitus. They should wipe that look off their face. Give better information about medications. Act serious about it.

      And tell us it can last... like forever.
       
      • Agree Agree x 3
      • Like Like x 2
      • Good Question Good Question x 1
    30. Billy_Shears

      Billy_Shears Member Benefactor

      Location:
      Knoxville, Tennessee
      Tinnitus Since:
      2010
      Cause of Tinnitus:
      Pink Floyd
      That my Tinnitus was most likely the cause of sensorineural hearing loss and that in order to defeat Tinnitus, we need to return those X's and O's on my audiogram to within normal range. The truth about ongoing development in this area that could make it happen - in the meantime, find ways to adjust.
       
      • Hug Hug x 1

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