Six Months of Tinnitus — Three ENTs and Three "Learn to Live with It" Later...

Discussion in 'Support' started by Gooch47, May 29, 2021.

    1. Gooch47

      Gooch47 Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      unknown
      I've had tinnitus for six months now. I've seen three ENTs and had an MRI. All three said "learn to live with it," "Get CBT therapy." None of them seemed interested in trying to help.

      First one prescribed 2 months of Nasacort, MRI showed nothing abnormal.

      Second one asked to come back in 3 months and we will see if it is worse.

      Third one poked a hole in my eardrum to see if it was inner ear pressure. It wasn't.

      I just feel ignored.

      Instead of getting used to it, my anxiety level seems to increase daily. I can't get my head around having this for the rest of my life. Thank heavens I'm 73 with not too many years left.
       
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    2. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      This is it... You eventually get used to it if you’re lucky lol. Some people do heal though. Positive mindset helps.
       
    3. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Same mindset here but tinnitus for 10 months, and am 28 years old.
       
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    4. Zugzug

      Zugzug Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      The concept of habituation, through meds and CBT (not TRT), is a real thing. The problem is that the medical community think it's enough -- like the difference between someone not bothered and someone bothered is all in CBT technique, which is not true at all.

      It's still true that antidepressants can make the tinnitus a little less annoying. Ultimately though, everyone has a ceiling of how happy they can be with these conditions. For some, the ceiling is that they basically forgot they had it. For others, the ceiling is 5-10% QoL improvement with meds and CBT. It's still a reasonable thing to try, with the understanding that we also deeply need research advancements for inner ear pathologies.
       
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    5. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      @Gooch47, I'm 72 and have had tinnitus for 30 years.

      Now that the ENTs eliminated any medical reasons for your tinnitus, that is good. At this point an ENT is worthless.

      30 years and many spikes later I can say it is not easy but I have habituated to every spike. I too am 6-7 months into a spike. Let us ride this out together. The Ttinnitusnever goes away but it becomes a background noise which is called habituation.

      Please keep us updated. I hope you turn the corner soon.
       
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    6. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      Spikes lasting 6 months? How long do you stay at baseline lol.
       
    7. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      Is TRT helpful?
       
    8. AUTHOR
      AUTHOR
      Gooch47

      Gooch47 Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      unknown
      I think I could deal with a solid tone much better than this pulsatile. I have an irregular heartbeat. Listening to each "missed" beat is scary sometimes even though they tell me they are harmless.
       
    9. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Hi Gooch47,

      Since you have seen three ENTs and been told to learn to live with it, that means they are unable to find any underlying medical problem that is causing the tinnitus. I understand that you feel ignored but you have been given good advice when it was suggested to get CBT therapy. ENT doctors treat underlying medical problems within the auditory system that cause tinnitus and there are many, but they don't treat tinnitus.
      Hearing an irregular heartbeat could be an indication of pulsatile tinnitus. Its presence can be felt in the blood vessels near the eardrum and the neck. A doctor can hear this rhythmic sound by placing a stethoscope on the neck. Pulsatile tinnitus can be as annoying as regular tinnitus.

      Try to see an Audiologist that specialises in CBT therapy for tinnitus. This can help to remove and demystify the negative thinking that is often associated with the condition. Over time the tinnitus is pushed further into the background making its perception less noticeable and is known as habituation. In addition to counselling, sound therapy and medication can be used. Please click on the links below and read my posts.

      All the best,
      Michael

      New to Tinnitus, What to Do? | Tinnitus Talk Support Forum
      Can Tinnitus Counselling Help? | Tinnitus Talk Support Forum
       
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    10. jastelze

      jastelze Member

      Tinnitus Since:
      2021
      Cause of Tinnitus:
      Pfizer Vaccine
      I saw several of your posts and want you to know I have the exact same sound / cause of this condition. Hang in there, as it will get better, even if simply due to getting used to the sound.

      For me, significant triggers are red wine (and any alcohol), vitamin D3 and Niacin. I am deficient in vitamin D (found out through recent tests), and when I took the 1000 IU pill for vitamin D, my ears rang like never before. Red wine and alcohol are things I have enjoyed in the past, but I notice a significant increase in the dog whistle ringing when I drink, so I have backed off considerably. Now, things that help. Advil. I take two every morning and notice a considerable decrease after about an hour.

      McKenzie Method neck exercise. YouTube it and do it. I have no idea why this works, but I do it five to ten times a day and have found relief. YouTube search “Vikas Agarwal tinnitus” and try it out for a few days. Don’t give up on the first try!

      Rain water sound. For whatever reason, the traditional sound machine white noise makes my tinnitus much worse, whereas the rain sound eliminates it completely. Must have something to do with the high frequency hearing loss, which three ENTs confirmed I now have in my right ear.

      Now for the tough one, getting used to it. The high pitched sound is likely caused by the vaccine, which caused a neuroinflammatory response. I’ll spare the details, but I’ve read for hours and hours on the cause of vaccine induced tinnitus, specifically related to COVID-19 and COVID-19 vaccines. Basically, the reaction of our body’s to the vaccine was an excessive inflammation that actually damaged the hair follicles in your cochlea (inner ear). The brain then turns up the volume to try and hear high frequency, thus creating the feedback noise we hear. Much like hearing an AM radio station that doesn’t come in well, so you turn up the volume to hear the words, but also hear that feedback increase as well.

      The bottom line and reason for this post is that you can beat this and get back to a more normal life. I was very down in the early weeks (understatement), but have noticed the more I focus on what is working, the less I focus on having to deal with this long term. For sleep at night, which is the first thing you need to figure out, try the rain noise. I have increased the amount of water I drink each day by making sure I get 12-15 cups every day, which seems to also help. Try a few of these things out and let me know if you find anything improvement. Most of all, know that people like me are working through this with you, and stay strong!
       
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    11. AUTHOR
      AUTHOR
      Gooch47

      Gooch47 Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      unknown
      Doesn't there have to be a physical problem with my neck or head?

      I bent down to pick something up off the floor and my tinnitus stopped temporarily.

      The sound level varies depending on which side I sleep.

      One ENT guy had me turn my head a certain way and my tinnitus stopped when he pressed on my neck. Moving my jaw to one side transfers the loudest sound to that ear. But the last two doctors said nothing could be done probably because the MRI was normal.
       
    12. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      I appreciate the response! I actually had a decent ninth last night just by telling myself I’ll get through this. Therapy acceptance whatever. Slept 4 hours straight... I’ll have a bad night again but I still appreciate it.

      Do you think it’s possible this heals for us or that we just habituate?
       
    13. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Your doctors are skilled physicians. If there was a physical problem causing the tinnitus this would have shown up during your tests at ENT. Turning of the head, twisting of the neck and moving the jaw can change the intensity of tinnitus. This isn't unusual because the auditory nerve, known as the 8th cranial nerve, is situated at the base of the brain and neck. I advise you not to experiment in changing the sound of your tinnitus using the methods above, as you could make it worse.

      Make an appointment to see an Audiologist that specialises in tinnitus management.

      Michael
       
    14. Zugzug

      Zugzug Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      Yes, as a matter of fact, it is. It's really good at preventing whiny, lazy, unambitious, attention-seeking little bitches like myself from turning the United States of America into a socialist state by being rewarded $900 per month in order to live below the poverty line. Thank God for it. If I were to just do it correctly, my immune system would stop wreaking havoc in my inner ear. Excuse me, I'm just bitter because I'm not very good at it. The people who are good at it are the ones that get better.
       
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    15. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      Geez man, my bad lol. I was genuinely curious.
       
    16. Zugzug

      Zugzug Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      Oh, haha. Sorry, my satirical rant was not directed at you at all, which I can see I was unclear about. There are some members on here that will beat your head with a hammer if you failed TRT...
       
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    17. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      Lol no worries. I know what you meant...

      Do you have an autoimmune condition?
       
    18. Eleanor89
      Approved

      Eleanor89 Member

      Location:
      Barrow in Furness
      Tinnitus Since:
      1995
      Cause of Tinnitus:
      Unknown
      Hello,

      I’ve had tinnitus for 26 years and it was so difficult at first to habituate, but I did.
      Unfortunately my tinnitus spiked in my right ear two weeks ago, it woke me up and I panicked.

      However this happened four weeks after I had total hysterectomy. I also thought it was my daughter's dog that barked near my ear. The doctor seems to think it’s the stress of being in pain for over a year and the operation which was extremely complicated...

      I’m trying to ignore it and staying positive, I wear my plugs just to help in busy environments....

      I have also been put on HRT two days ago as I have also been up and down since my operation.
       
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    19. AUTHOR
      AUTHOR
      Gooch47

      Gooch47 Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      unknown
      I'm in the middle of an anxiety attack. I have just taken 1 mg of Ativan. I pray it works.

      I keep thinking I need to go to the ER but am terrified they would keep me.
       
    20. AUTHOR
      AUTHOR
      Gooch47

      Gooch47 Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      unknown
      Excuse my ignorance but what is TRT?
       
    21. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      I'm going to try Prednisone tomorrow to see if it helps any.
       
    22. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      Tinnitus Retraining Therapy.
       
    23. Forever hopeful
      Disappointed

      Forever hopeful Member

      Location:
      USA
      Tinnitus Since:
      2015 resolved, 4/20 L ear, increase 2/21
      Cause of Tinnitus:
      2015,noise,2020-21 SNHL
      I am so sorry you are experiencing this. It’s very frustrating to have ENTs tell you to learn to live with it. I had both my otologist and my ENT tell me the same thing, although they were very nice when they said it. They were more concerned with how I was going to manage my anxiety since they know there is nothing they could really do for me after they ruled out all things treatable.

      Part of the problem is that it’s the neurons in your brain creating the sound, not your ears, and they just don’t know how to deal with the nerves in your brain, which is why we have no cure or treatment. Very, very frustrating.

      Just wondering, did you have a hearing test? Do you have hearing loss? I have hearing loss and that’s what caused most of my tinnitus. That and probably some TMJ and allergy issues.

      Also you wrote you have pulsatile tinnitus. Perhaps you need a cardiac and neurological work-up.

      Hang in there.
       
    24. AUTHOR
      AUTHOR
      Gooch47

      Gooch47 Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      unknown
      I have mild hearing loss in high frequencies.

      I had a cardiac workup. Just heart I think. I don't remember if they did my neck. No neurological checkup though.
       
    25. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      I feel for you. My spike is going on 7 months. Trying to keep it together. God bless and many prayers.
       
    26. AUTHOR
      AUTHOR
      Gooch47

      Gooch47 Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      unknown
      My next question is, what next?

      I'm considering a chiropractor since head position when lying down was a factor. That has diminished a little.

      Still waiting for a therapist. I'm not interested in telehealth visits and that is a roadblock.

      Should I try hearing aids?

      Another question: Two days ago I was exposed to a lady with a bad head cold. If I caught it, how bad would that be?
       
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    27. AliasM
      Depressed

      AliasM Member

      Location:
      Australia
      Tinnitus Since:
      09/2020
      Cause of Tinnitus:
      Botched lumbar puncture, CSF leak
      TRT for me began with an explanation of how hearing and sound works including an anatomy and physiology lesson on the ear and auditory pathway. I was also gently reassured that the sound was not harmful and wouldn't kill me, and that once 80% of patients learn this information, they are no longer bothered by their tinnitus. It felt incredibly patronising. That took what seemed like forever. I wondered when we were going to get to the point, but that was the point.

      She then asked me how I felt after learning that information. It was expected that I would feel better after what felt like being treated like a school age child. I told her that I understood the anatomy and physiology before our appointment, and I knew that it wasn't going to kill me. I never assumed it would! My distress was due to the fact that it was mentally torturous and debilitating and that my severe tinnitus and hyperacusis had destroyed my quality of life.

      She then went on to tell me that the problem with tinnitus was not the sound, but my response to it... and that hyperacusis is an anxiety disorder, not an auditory issue. She also informed me that there is no such thing as mild and severe tinnitus, just our perception of it. They will also tell you that the distress of tinnitus is purely psychological and is not associated with loudness, pitch or intrusiveness. Again, it's all just our reactions and perceptions.

      This is TRT in a nutshell.

      I had 2 sessions and paid several hundred dollars. Save your money. If you want TRT, you can do it for free on YouTube. They basically drag all of the above out over as long as they can or as many sessions as they can to suck as much money out of you as possible.
       
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    28. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      Holy hell, that sounds like garbage lol.
       
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    29. Stanlex
      Wtf

      Stanlex Member

      Location:
      A world where everything sounds funny
      Tinnitus Since:
      2019 - mild, 03/2021 - the real shit
      Cause of Tinnitus:
      Something that cannot be identified by 21st century tech
      This is just morbid.

      They really think we are that stupid? That we suffer from tinnitus just because we think it is going to kill us? LOL.

      Of course it is not going to kill me (if it won't make me starve to death if I won't graduate due to tinnitus and won't get a job lol). But I say and what? There are hundreds of chronic diseases that are never going to kill anybody but their presence still destroys people's lives.

      Don't get me wrong. I know from my experience that it is entirely possible to live 100% quality life with mild tinnitus. But when it gets so bad that you start getting headaches from it, start having troubles concentrating, sleeping and relaxing then it is a problem that is not mental and it is not for psychologists to solve. I also understand there are people with super mild tinnitus and some OCD that makes them so obsessed with the tinnitus they don't do anything because depression but it is a minority and treating us same like them is offensive. And it is also bullshit that it doesn't matter how loud the tinnitus is or how bad the pitch is. Like wtf? I don't want to be vile but people like this deserve to have severe tinnitus for at least a week to make them rethink their stupid opinion.

      They should really stop doing this, it is so pathetic. It is like blaming a person without legs that he can't walk because he has mental block to do so.
       
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    30. Exit

      Exit Member Benefactor Hall of Fame

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      Noise
      Oh, it’s not going to kill me?

      Whew, what a relief, I’m going to go straight back to living my life and perhaps have a big rave party this weekend :)

      Ooh! And some fireworks just to celebrate properly!
       
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