Act Now What Do Doctors Need to Understand About Tinnitus?

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

    1. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Kirsty, I hope you are doing well. 'Empathy' is hard for people that do not have tinnitus. I give you all the hugs of a not so understanding world. I pray for better treatments or cure. G-d bless, hope you are doing well.
       
      • Hug Hug x 1
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    2. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      All doctors should be made to listen to the The Twilight Zone episode "Sounds and Silences" from 1964. It's literally about tinnitus and hyperacusis and the damage caused by noise.

      @aot mentioned in a post, and it should be mentioned here.

      Here's a radio version of it:

      Twilight Zone Radio - Sounds And Silences


      EDIT: Actually, I take it back, doctors shouldn't be told to watch or listen to that episode. I posted before I got to the end of it... he goes to a shrink and finds out it's all in his head :p

      Not what we need... :(
       
      • Hug Hug x 1
    3. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      I wished my doctor knew just how intrusive and scary it was and how badly it affects our health. It has affected my nervous system; the first 2-3 doctors I've seen all said they have it too, and you just have to try to ignore it. Well, they obviously didn't have it the way I did, so they dismiss it as no big deal because you can't see it, it's just annoying. Mine was more than annoying. It was extremely intrusive and I had to quit my job.
       
      • Hug Hug x 5
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    4. Michael01
      Frustrated

      Michael01 Member

      Location:
      Grafton,NSW,Australia.
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Unknown
      What I've been wishing for is something like "tinnitus house" where we could go, and have access to all the treatment and support we need without having to shop around ENT's to find a good one. Because if I could have accessed a good ENT from the start, I suspect that I'd be a lot better off right now.
       
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      • Hug Hug x 1
    5. tpj
      Depressed

      tpj Member

      Tinnitus Since:
      08/2008
      Cause of Tinnitus:
      probably noise
      This has already been mentioned but I think it's very important. I want doctors to know how debilitating tinnitus is. That it drives many people to think about or commit suicide.
       
      • Agree Agree x 3
    6. Hotspur2931

      Hotspur2931 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Cold/flu
      1. Saying "it probably won't go away" is a knife to the heart of your patient and can send them into a panic that makes it louder and more permanent. The best thing to say to a new sufferer is that it can recede into the background if you take serious action to take your mind off it RIGHT NOW. All the things I learned about tinnitus came to me months and months in. If I'd known these things at the beginning I think I would have had a much easier ride.

      2. Related to the above, EVERYONE who presents with tinnitus should be put into intensive counselling - with a specialist in hearing therapy - IMMEDIATELY. People spiral into depression and it can kill, not to mention being unnecessary. At the very least, do NOT let the patient walk out the door without giving them a toolkit of things to try and some clear direction. Very few people can navigate this all on their own.

      3. Take it seriously and stop saying "there's nothing I can do" or "just get used to it". You're the doctor, there is ALWAYS something you can do. Even if it's just antidepressants. A person's experience of tinnitus can be GREATLY improved with good management and coping techniques. It is cruel and evil to tell someone to just live with it.

      4. Be prepared to do further investigation. Some tinnitus can be fixed, if you can get to the root cause.
       
      • Agree Agree x 3
    7. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Most doctors lack empathy. They would say that is terrible and turn it off. It would be nice if they took the time to explain noise exposure and tinnitus, plus give you a set of earplugs. It would be nice if the doctor emphasized the importance of keeping away from loud noises.
       
      • Agree Agree x 1
      • Creative Creative x 1
    8. Isabella 123
      Curious

      Isabella 123 Member

      Location:
      Chapel Hill NC
      Tinnitus Since:
      12/2013
      Cause of Tinnitus:
      Probably traumatic noise event
      I wish the ENT I went to had been even remotely informed of anything about tinnitus and had at least one empathetic cell in his body. He was callous, condescending, rude and offered no help other than to keep my TV on all the time to drown out my tinnitus. I went out and sat in my car and cried so much I couldn’t drive home for a long time.
       
      • Hug Hug x 2
    9. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Did the ENT at least explain the causes of tinnitus? Did the ENT say anything about avoiding exposure to loud noises?
       
    10. DaveFromChicago

      DaveFromChicago Member Podcast Patron Benefactor

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      To Isabella123:

      Whenever I have visited my ENT Doctor, all that happened was that the hearing test severely aggravated my tinnitus and I subsequently received the Doctor's flat out denial of any method of remediation.

      When I got back to my car, my panic level was such that I had to swallow for a few minutes to counteract the serious urge to vomit. In order to drive home I had to turn up the volume of an unoccupied white noise band on FM that would mask the aggravated tinnitus.
       
    11. Isabella 123
      Curious

      Isabella 123 Member

      Location:
      Chapel Hill NC
      Tinnitus Since:
      12/2013
      Cause of Tinnitus:
      Probably traumatic noise event
      Not a word of information or encouragement. Just sat across the room messing with his laptop. “Wellllll. You have tinnitus. Nothing can be done about it. You just have to learn to live with it.” He had looked into my ears and pronounced them fine. Then he said that thing about keeping the TV up loud and walked out.
       
    12. seekingpeace

      seekingpeace Member

      Location:
      Minnesota, US
      Tinnitus Since:
      11/14/2019
      Cause of Tinnitus:
      Acoustic trauma - chiseling concrete 1 day. oops.
      This is my first post and I want to give a little background before offering my two cents. My ears went berserk about 10 months ago after an acoustic trauma. This has made me as miserable as anything I've ever experienced, and I'd say it ruined my life for a while. The tinnitus continues to impact my life every hour of every day, though thankfully the worst of the hyperacusis has subsided and I am no longer panicking all the time. But what a misery. I've tried just about everything and seen every specialist possible. I have seen two ENTs, three audiologists, four psychotherapists, studied & practiced mindfulness meditation, had two audiograms, an EEG, taken anti-anxiety meds and a smattering of supplements, bought extra audio equipment to maintain a sound-enriched environment, plus a bunch of hearing protection to stay safe(r). I finally landed on a local tinnitus & hyperacusis clinic that finally gave an extended audiogram and diagnosed me with tinnitus, hyperacusis, tonic tensor tympani syndrome and misophonia, all triggered from that single event. I'm now starting my fourth month of TRT. I've spent upwards of US$6,000 out of pocket, so I have thought about what could have been done better.

      Here's what I wish my doctor would have done:

      1) Recognize that severe tinnitus/hyperacusis/etc. requires a multi-disciplinary treatment strategy, and help me organize it. It would have been tremendously helpful to have a designated medical person to coordinate my care, someone like the hospitalist who helps coordinate treatments when someone is in the hospital or has a serious illness. While some people may be minimally affected, those of us with serious problems like mine have REALLY serious problems, which requires a variety of specialists and information. I had to piecemeal my own approach based on the recommendations of the latest doctor I saw. Some freaked me out with their hopelessness, some gave me hope but couldn't deliver any treatment, and left me floundering. Most knew a little something, most cared, but all were isolated in their specialist world without an understanding of the bigger picture of what I needed, how to help, or what others could provide. And I needed a lot: mental health support, information on evidence-based treatment strategies and the normal course of recovery/rehabilitation, an extended audiogram, plus practical advice on how to protect your ears, and advice on how to avoid OVER-protecting your ears. Also knowledge of common treatments and quackery.

      2) This is in the realm of fantasy: Provide insurance coverage for beneficial treatments like TRT. It's not a silver bullet, but it helps and gives me hope. It's just painfully expensive.

      Aside from my tinnitus & hyperacusis clinic, this forum has given me the most help and hope. Ideally I'd like my doctors to be able to help steer my recovery and rehabilitation, but I am deeply grateful to all of the people who have shared their insights in this forum and filled in the knowledge that I can't get from my doctors.
       
      • Agree Agree x 4
    13. Zugzug

      Zugzug Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Likely Autoimmune Inner Ear Disease; Sjogren's Syndrome
      I agree with this. This thread is loaded with valuable advice; every tinnitus and hyperacusis patient probably reads these comments and nods. But the core issue is that we are viewed as a bunch of crazies, despite being the people with the actual condition and totally in agreement. It's wild.
       
    14. BobDigi
      Kick ass

      BobDigi Member

      Location:
      UK
      Tinnitus Since:
      5.6.14
      Cause of Tinnitus:
      Loud noise
      Or try Prednisone.
       
    15. BobDigi
      Kick ass

      BobDigi Member

      Location:
      UK
      Tinnitus Since:
      5.6.14
      Cause of Tinnitus:
      Loud noise
      For God's sake allow people to try Prednisone early. After all you don't face the prospect of intrusive ringing in your ear for the rest of your life.

      So stop being as useful as a google search, allow people to try something that might help.
      You know no more than i do do let me try something!

      That is what I'd like to say to a doctor!
       
      • Like Like x 1
    16. etn_hopes

      etn_hopes Member Benefactor

      Location:
      Berlin, Germany
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      SSHL
      1. Just how deeply depressing, threatening and life destroying this condition is when you have elevated tinnitus loudness level.

      2. Intratympanic steroid injections should be the first line treatment.
       
    17. serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      Another life taken too soon by this horrific affliction:

      Tinnitus from pub gig made life unbearable for retired fireman who committed suicide

      This article is from a few weeks ago (TW, suicide) - it's heartbreaking that nobody takes this seriously - in this case, it's clear that the doctors didn't treat him with any sense of urgency and apathy. This stuff can break someone - we need more empathy from the medical profession.

      "She took him to the GP’s surgery and demanded an emergency appointment. ‘We wanted to see an audiologist but the GP said Glen would have to take a hearing test first – another two weeks away! He was just broken.’"

      'He was given ear devices that generate white noise to trick the brain to focus on something else and was told to give them time to take effect.’ Glen went back to work, but if there was a loud noise he’d have to go home. He stayed in and got anxious and depressed.

      The tinnitus got worse and developed into hyperacusis, oversensitivity to everyday sounds. Linda desperately encouraged him to follow a normal life, like the doctors advised, but it felt like she was constantly bullying him.

      Poor Glen’s medication was changed in June and the new drug only made his tinnitus and anxiety worse. He had a referral to the mental health crisis team but everything was taking so long.

      ‘At an appointment in July 2011, the GP said he just had to wait. I saw the light going out in Glen’s eyes. I wanted to scream, “Can’t you see he’s suicidal?” But I couldn’t bring myself to say the words out loud.


      His widow is now trying to raise awareness of the condition amongst doctors and get them to take it more seriously.
       
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