Act Now What Do Doctors Need to Understand About Tinnitus?

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

    1. JohnFox

      JohnFox Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      Unknown. Sudden loss of 100% hearing R ear with Tinnitus
      I'm not surprised. I just wish I was there, waiting for that moment when they just couldn't endure it any more, and then look at them in the face as they're pulling off the headphones, and say to them... "Now, imagine facing the rest of your life with that racket surging through your head day and night, and having your doctor tell you to get used to it, or buy a fan."
       
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    2. bobvann
      Cheeky

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Loud shit
      My ENT was honest and told me not to really expect anything from TRT. That if one has hyperacusis, it gradually gets better and tolerance lessens. GPs need to simply stop blaming everything on anxiety and do their job. Most audiology clinics are incompetent and offer a bastardized version of TRT just to sell overpriced hearing aids.
       
    3. donotringatme

      donotringatme Member Benefactor

      Tinnitus Since:
      09/2020
      Cause of Tinnitus:
      ETD, TMD, CI
      Don’t. Tell me. It’s. From. Stress.

      Just say: “I have no idea what’s going on, I don’t give a damn either, that would be 50€”
       
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    4. Quiet please
      Balanced

      Quiet please Member Benefactor

      Location:
      Westchester County, NY
      Tinnitus Since:
      May 2008
      Cause of Tinnitus:
      Only a guess, but probably hearing loss.
      They should all be taught NOT to say to a patient in extreme torment “It’s tinnitus. Learn to live with it”.

      I was told this exact same sentence by a handful of ENTs. Not ONE of them exhibited any emotion or empathy. I’m not ashamed to admit that on more than one occasion I wished they were afflicted like me for a week or so. Just so they could experience it like me. Severe 24/7 torture. They need to be taught tinnitus is not mild for everyone. That not everyone can just habituate like it’s nothing. They need to be taught that for some (pay attention to what your patient is telling you!) it’s very debilitating.
       
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    5. Michael01
      Frustrated

      Michael01 Member

      Location:
      Grafton,NSW,Australia.
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown
      Another thing I'd like to address is how hard it is sometimes to get referrals.

      Lately I've been suspecting something is going on in my head which may affect my tinnitus so I've been trying to get a referral to have it looked at. Seeing me away with fatigue and nausea tablets is not what I'd call a satisfactory solution, but luckily I had the books open at another GP in my area, so I've made a appointment with them to see if I can get what I need from them.

      If nothing else, it'd take a load off my mind to have this looked at.
       
    6. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      Doctors and ENTs are worthless, imho and yes, since they probably know more about the ear than the average patient, they are content to do nothing and even admit that to the patient.

      I think researchers should inform both doctors and patients.

      Who are knowledgeable authorities on tinnitus? There's a lot of theories and assertions here but also a lot of vague information.
       
    7. Joe C
      Stressed

      Joe C Member

      Location:
      Massachusetts
      Tinnitus Since:
      December 2019/ improved/ back past month
      Cause of Tinnitus:
      Noise exposure, Think flare up is due to sinus/eust problems
      That tinnitus makes you have to make alterations on the simplest of tasks sometimes. It makes normal things stressful. So when you have a lot to deal with already and on top of that a tinnitus spike, etc. It can be extremely overwhelming. It's not as simple as just trying to decrease stress and relax. It means anything you have to deal with already has an extra weight on top of it. It's kind of a dark cloud. Even when you don't hear it and you are happy, you know that is just the moment.
       
      • Agree Agree x 4
    8. Walker123

      Walker123 Member

      Location:
      The Netherlands
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Unknown
      I wish she (the ENT) had warned me about protecting my ears and avoiding loud music, fireworks.
      This because the first time my tinnitus got better after 3 months, but after that it got worse because of loud noises. Noises that aren't damaging for people without tinnitus , but did cause my tinnitus to come back.
       
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    9. Bill Arsenault

      Bill Arsenault Member

      Location:
      Boston.
      Tinnitus Since:
      Permanent and intrusive since 2017.
      Cause of Tinnitus:
      Medication / Noise Over Exposure
      Oh Man.

      Don’t get me started-
      I got things to do today.

      I’ll get into more detail later-
      Because I have A LOT to say.

      But ya know-
      It would have been helpful to say the least if he would have asked if I was taking any meds and at least mentioned the word
      “OTOTOXICITY”

      Instead I had to learn about it from this forum months later and by then the damage was already severe and I still had to find a way off the Ototoxic soup of addictive medications I was taking-
      Which took another few months.

      And this was at the illustrious
      MASS GENERAL EYE AND EAR.
       
      • Like Like x 1
    10. brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      :popcorndrink:
       
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    11. Watasha
      No Mood

      Watasha Member Benefactor Advocate

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      My ENT was practical but I wish there was a deeper drive for treatment driven by doctors and a recognition that this is a vastly underfunded/underappreciated condition. I felt alone even after talking to the doctor, particularly because he too had tinnitus but it didn't bother him at all, so it made me feel isolated/alone in my experience.

      I received more of a shoulder shrug and a "here's what you can do." We need doctors also driving a need for change and research.
       
    12. ACG
      Depressed

      ACG Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Not Sure
      I appreciate a doctor who stays on top of current research and is familiar with signal timing, neurotransmitter and potassium channel trials, new drugs on the horizon etc, maybe the results of these other trials with ketamine, lidocaine, TMS, etc. As a tinnitus patient, it's nice to have a little hope to hang on to.

      Team Approach. Ear doctors should have a list of colleagues who have experience working with tinnitus patients. While I am pretty sure anxiety alone doesn't cause tinnitus, tinnitus can 100% cause anxiety, so doctors need to have a roster of psychiatrists, psychologists, maybe biofeedback specialists etc. who they can send their patient to should the patient wish to try a drug or some form of talk therapy to help them deal. Patients shouldn't have to cold call 100 psychiatrists to ask if they've treated tinnitus patients (and then have to have the psychiatrist ask "Have you seen an ear doctor?" SO FRUSTRATING. Same thing for TMD related T. A decent ear doctor should be able to determine if perhaps the tinnitus is related to something with the facial muscles and should have the name of a good neuromuscular dentist.
       
      • Agree Agree x 2
    13. Watasha
      No Mood

      Watasha Member Benefactor Advocate

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      Also, just to reinforce what others have said, I would have appreciated a course of prednisone in those early days just in case.
       
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    14. Eric N

      Eric N Member Benefactor

      Location:
      Montreal QC Canada
      Tinnitus Since:
      10/2012, 03/2016, 05/2017, 05/2018
      Cause of Tinnitus:
      noise + 3 major increases via (shouting / MRI/ flu+Tylenol)
      I've been to a couple of ENTs. Some were extremely impatient and some were patient and explained things but ultimately it made no difference because there's nothing they can do beyond the basic examinations.
       
    15. CricketEars

      CricketEars Member Benefactor

      Tinnitus Since:
      10/2003
      You don’t just cope with it. Not having sympathy and acting like suddenly losing hearing and developing T isn’t a big deal just because the audiogram wasn’t that severe
       
    16. GBB

      GBB Member

      Location:
      NYC
      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Microsuction / Additional Acoustic Trauma in Close Proximity
      Another one - don't perform micro-suction on a patient that has ever complained of noise-induced tinnitus in the past...
       
      • Agree Agree x 5
    17. Rb86

      Rb86 Member

      Tinnitus Since:
      5/31/19
      Cause of Tinnitus:
      Noise
      My doctor told me anything after 6 months is permanent. It's just not true. There are people on here who had theirs fade away 2 years+ later.

      Also important, improvement is possible. I've improved a fair amount since the 6th month period.
       
    18. JT2020

      JT2020 Member Benefactor

      Location:
      Los Angeles
      Tinnitus Since:
      5/2020
      Cause of Tinnitus:
      Acoustic Trauma, Ear Wax, Congestion
      I think doctors need to know about this website and read as much of it as they can. They have to understand this is a debilitating disease that causes horrible physical, mental torture. Yes, loud piercing sounds both high and low frequency non-stop is TORTURE. They should be educated on all the possible treatments available that can help and be available to educate their patients with compassion and point them to where they/how they can obtain these treatments.
       
    19. robinbird
      Fine

      robinbird Member Benefactor

      Location:
      New Hampshire
      Tinnitus Since:
      02/2015
      Cause of Tinnitus:
      Diagnosed with high pitch hearing loss, both ears, right is worse
      Stop dismissing Tinnitus as if it’s irrelevant. Maybe the insurance companies are controlling the outcome for each of us.
       
      • Agree Agree x 1
    20. Harley

      Harley Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      unknown
      I have just copied one of my older posts on this topic, since I'm unable to maintain focus on tying my shoes anymore:

      Here is what I would like to hear from a GP or an ENT upon being diagnosed with tinnitus, after they take you to a private room, along with your family if possible:

      "I'm very sorry, but you have an incurable condition for which there is no treatment currently available.
      It is called tinnitus.

      Tinnitus can get better, stay the same or get worse for reasons which we still don't fully understand.
      While this will be without question the most challenging and darkest period of your life, there might be some good news on the horizon within the next 5 to 10 years as far as some medical treatments possibly becoming available.

      In the meantime you could try some counselling based therapies such as the CBT, however those types of therapies only focus on the mental fallout and not the actual cause.
      The success rate of those therapies currently remains unclear and subject to interpretation.

      On behalf of the medical profession, I would like to offer my deepest condolences along with a sincere apology for being unable to help you at the present time.

      I would advise you to try and wait until a treatment aimed at reducing (or eliminating) tinnitus becomes available, however If you chose to end your life, it is completely understandable, given your predicament.
      This is why we offer an assisted end of life option regardless of the current laws, as your condition is subject to a worldwide exemption based on humanitarian grounds about unnecessary torture.

      This option is of course free of charge, along with a letter of apology and a refund of all of your tax contributions, which you have paid towards health care up till now, which will go to your family".


      To me, the above sounds so much better than some lame joke about "at least having legs" or a casual advice of "learn to live with it".

      A tinnitus diagnosis should be delivered with the same sensitivity and respect as the diagnoses of a terminal illness, considering it can literally wipe out someone's life in a couple of weeks.
       
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    21. DaveFromChicago

      DaveFromChicago Member Podcast Patron Benefactor

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      During my last ENT Doctor visit, I asked if there could be any promising treatments from recent research, and he replied, "Maybe in one hundred years." I thought that this was appallingly insensitive and indicative of an inexcusable lack of awareness and interest, even in regard to what I as a layperson can find on the Internet.

      I am also not going to go through that tortuous hearing test where those rubber stoppers are jammed into your ears in that narrow soundproof box. What exactly is all of this rudely delivered rigamarole for (at a total cost of $300.00)?

      I was told that increased hearing loss would prompt them to recommend another hearing aid (at a cost of $4,500.00), but sometimes the tinnitus will just be aggravated by the increased volume.

      I mentioned to the audiologist the shocking number of suicides reported on the Internet from this condition, and she just lackadaisically replied' "Oh, I know."
       
      • Agree Agree x 1
    22. Jack V

      Jack V Member Benefactor

      Tinnitus Since:
      1/2020
      Cause of Tinnitus:
      please stop editing my posts - thanks
      Great question! A couple thoughts:

      First, I've encountered a belief that tinnitus volume is a constant, and what changes is one's emotional response to it, "if it sounds louder one day to the next, that's because you're experiencing more stress that day." My experience is not that at all, and that tinnitus has a volume rollercoaster independent of emotion. One day it's louder, one day it's softer, irregardless of emotional state. Otherwise, it's easier for a doctor to blame the patient, and based on a fallacy.

      Second, there should be a more universal understanding - and an urgency - about potentially helpful time sensitive interventions following noise induced tinnitus, just as there is for sudden hearing loss. I was lucky that my ENT wasn't dismissive as others have described theirs, but the salient point isn't just a better bedside manner, but more aggressive and comprehensive treatments in the precious early days of onset.
       
    23. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      I want to add that severe tinnitus leads to being physically crippled. Whether it's not working, avoiding nose, receiving pain from noise, psychologically and physically disabled from LOUD, INTRUSIVE AND DEBILITATING TINNITUS (tones), doctors of all levels and fields (from general physicians, ENTs, psychiatrists etc. to whatever Ear expert you wish to name) don't realize/understand it or maybe they don't care. I don't know which it is but it needs to change.

      The disability insurance/coverage/assistance (meaning payment) is woefully inadequate and unsupportive, both financially and personally. The health community for this condition is unsympathetic and practically non existent. Maybe in your country, you get help but in Canada, nothing is done (or you wait forever in limbo).

      The money only helps in that you get to physically and psychologically suffer with a bit more money than you had before. You need doctors to support you or the government ignores/denies you completely.

      So, what do doctors need to understand?!?

      ANYTHING/EVERYTHING THAT RESULTS IN THIS SITUATION BEING CHANGED.

      It's not a cure but it would be *something*. :(
       
    24. Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      In addition to everything people have mentioned (all awesome points).

      1.) If someone comes in with tinnitus following a loud event/acoustic trauma, DO NOT send them off for microsuction, which can peak at 120 dB within the ear. If there is a suspected wax issue, manual cleaning should be done. A patient should also not be prescribed antibiotics if there is no ear infection present just to “try it out”.

      2.) A brain MRI is very unlikely to find anything if the tinnitus is bilateral and there are no other symptoms. A brain MRI is the loudest scan a person can get. A patient with an acoustic trauma should not be sent off to “rule stuff out” just because you (ENT) don’t have an answer. There are loads of research papers that show that an MRI can cause a temporary (sometimes permanent) shift in hearing thresholds even with ear protection.

      3.) Recognize that tinnitus can change tones and loudness due to noise exposure. It’s not an emotional response, reactive tinnitus or whatever we want to call it is absolutely real.

      4.) ENTs need to be more up to date on hyperacusis, especially that which is often seen with an acoustic trauma and comes on with the onset of tinnitus. ENTs need to recognize that acoustic trauma can bring about other issues such as TTTS, ear burning and other neuralgia type symptoms. This isn’t really a “tinnitus” issue but it’s certainly an important part of a noise related injury.

      As most have said, tinnitus varies VASTLY from person to person. Mild, single tonal tinnitus that can only be heard in a quiet room is not the same thing as loud, screeching, shrill electrical zapping noises, buzzing, dentist drill tinnitus that can be heard in the shower or on the freeway. It’s time to recognize this and stop gaslighting patients and telling them it’s all about controlling their emotional response.
       
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    25. ChristopherPage

      ChristopherPage Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Unknown, perhaps noise exposure
      Mostly, that the tinnitus was causing a level of distress that had me debating killing myself. Even though folks experiencing the worst kind of chronic, intrusive tinnitus seem to be relatively rare in the overall population of folks who have tinnitus, I'd want my ENT to understand that this population exists, and to be able to offer some compassion to them.
       
      • Agree Agree x 2
    26. mikki_

      mikki_ Member

      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Stress / High frequency hearing loss
      I second that.

      Encouragement but not being dismissive. It is amazing what can one get used to. I think one of the tinnitus researchers said to Hazel that he has tinnitus “sometimes it is louder than your voice”. That line has really resonated with me.
       
    27. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Healthcare professionals need to understand that the quality of life of a person with tinnitus is compromised. And, while someone with tinnitus may eventually habituate and live their life, it will be a life of compromises and one prone to isolation if care is not taken. Depending on how severe the tinnitus is, habituation my happen sooner for some than others. And for some, it may never occur, but that's not for lack of trying.

      I wish that a physician would have explained to my husband early on that there are no effective medical treatments or cures, although one is sorely needed, and to expect our life together would now be different. My husband didn't believe me and deemed the audiologist to be someone who just fit hearing aids. And the whole idea of using sound was ridiculous, we were quiet people so the idea of always playing some kind of noise was absurd.

      I also wish that someone, either a physician or audiologist, would have been up front about the state of tinnitus research. I wish the audiologist would not have told me that there is a lot of misinformation online and the only place I was to look was on the ATA's website. When I looked there it sounded like tinnitus research was advanced and well organized. ATA said they supported 'cutting edge' research. Nothing could be further from the truth.
       
      • Like Like x 1
    28. Harley

      Harley Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      unknown
      As someone once pointed out, ATA and BTA are the only organizations in the world, that actually downplay the very condition they are supposed to represent.
      One quick visit to either of their websites and you will learn that:

      1) Tinnitus is really no big deal.
      2) All you need to do is to pick one of the many treatments, that is right for you.

      At least that was the impression I got, last time I checked them.
       
      • Agree Agree x 4
    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.
      My ENT sent me for an MRI to check for a tumor and when that came back negative he said you have some high frequency hearing loss and you have tinnitus and there is nothing we can do. You just have to learn to live with it. At that point I felt so alone and a feeling of abandonment and afraid. I did not no where to turn or what to do and became very nervous, depressed and lost 30 lbs and wasn't a heavy individual. My primary Dr. put me on Xanax for he was concerned with my overall health. I found this site which was very helpful and Julian Cowan Hill and a couple other folks that were helpful calming me down and understanding how to deal with this condition. So ENT doctors are not really helpful or trained to recommend how to deal with this constant ringing that could drive someone insane or even worse suicidal. Doctors need to recommend people or sites like this one for help with this horrid condition. You are just cast out to sea and left to figure how to handle this on your own. Fortunately I have been able to habituate but at times it still can be very annoying...
       
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    30. David Ashley

      David Ashley Member

      Location:
      Los Angeles, CA
      Tinnitus Since:
      August 2018
      Cause of Tinnitus:
      Unknown. Def as least related to depression/stress.
      It’s frustrating because I go in there and explain that I am in an incredible amount of pain, spiritually, and they just don’t act like they want to try and solve the problem. All I ever wanted was to find out the root cause of this, it was never quite determined. Whether it was job-related were stress related or earplug related or something else. I don’t have very expensive health insurance, and I’ve only ever worked with people who do the required bare minimum. A tremendously dispiriting experience. At this point I’ve largely given up hope that anybody can offer me any help. Only wealthy people have options.
       
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