Prevalence of Idiopathic Tinnitus — How Often Is the Underlying Condition Really Found?

Discussion in 'Support' started by Stanlex, Jun 4, 2021.

    1. 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
      When I read local health portals in my country, almost every portal/blog says that tinnitus is sometimes treated by finding the underlying medical condition, however, in majority of cases the underlying condition is never found, therefore the tinnitus is considered idiopathic and it is never treated, or doctors try to treat it in a generic way by assuming it is due to inner ear not having enough blood flow and they give patients some Ginkgo biloba tier drug, albeit mostly without effect.

      However, almost everyone here has some cause written on their profile. It is really rare to spot someone here with idiopathic tinnitus.

      Now, the question is why is it like that? Is it because doctors are incompetent/lazy to find the diagnosis, or is it because patients with not so severe tinnitus don't make enough effort finding the correct cause of their tinnitus, and they just stop searching for it when their GP says to deal with it? Or is it just because people here are just guessing their cause?

      Why I ask? Because I want to know if someone went to see enough doctors and be patient enough, would they have a very high chance of eventually finding the cause of their tinnitus, and possibly then treat it?
       
    2. Kriszti

      Kriszti Member Benefactor Hall of Fame

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      I don't think it's a patience issue or an effort issue.

      I went to 7 ENTs, one GP, one neurologist, dentist, Doppler US, neck RTG, MRI/MRA, got lab tests done, went through 3 hearing tests and I'm not one bit closer to the cause of my tinnitus.

      Given my history of headphone use and because it is reactive to sounds I guess it is noise induced. I also have an intermittent tone which behaves very strangely and differently than my bilateral tinnitus, but can't find a doctor who is interested in it at all. Tinnitus, deal with it.

      I think most people here, who cannot pinpoint a special event or medication, use guesswork as well.

      Diagnostics are not well developed enough just yet to provide meaningful information about the inner ear regarding tinnitus for example. The sad reality is that tinnitus is a mystery and finding the correct underlying cause right now is rarely possible, let alone treat it. I would recommend anybody to get the basic tests done (be cautious about tests that are loud, ENTs and audiologists sadly are not), but be prepared that the cause probably won't be found.
       
      • Agree Agree x 4
      • Helpful Helpful x 1
    3. Stacken77
      Wishful

      Stacken77 Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2020
      Cause of Tinnitus:
      Noise (likely headphones & cars), Acoustic trauma did me in
      I think most of us guess, as it seems impossible to be completely certain beyond a shadow of a doubt. In my case though, my first persistent tinnitus tone came to be the day after a lot of loud sounds (i.e. acoustic traumas). I felt that my hearing was a bit sensitive that evening. As I've also played a lot of loud music before and run 4-stroke engines without hearing protection; I conclude, and are rather certain, that it is induced by noise and associated hearing damage.
       
      • Agree Agree x 1
    4. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Although tinnitus can start for no reason, in the majority of cases something usually causes it. They fall into three, possibly four categories.

      Exposure to loud noise. Typically, it is listening to audio through headphones, earbuds or headsets at too high a volume. Many people in this forum have noise induced tinnitus caused by using the devices mentioned or other forms of loud noise exposure.

      An underlying medical condition. This can be within the auditory system or elsewhere in the body such as TMJ, which relates to the jaw joint.

      Pulsatile tinnitus, caused by a change in blood flow in the vessels near the ear or the neck.

      Tinnitus can be brought on by medication.

      It can also be brought on by stress and anxiety.

      Michael
       
      • Informative Informative x 1
    5. AUTHOR
      AUTHOR
      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
      Woah. I have been to like 3 ENTs and the third one, when I mentioned she is not the only one whom I consulted, literally almost yelled at me: How could I? Like it was something bad that I moved on because she didn't help me at all, only scammed me by providing me a therapy that didn't work at all, but still asked me for the money.
       
      • Hug Hug x 2
    6. Chinmoku

      Chinmoku Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Started with a cold, possibly worsened by medication/noise
      Yeah, some doctors accuse you of "doctor shopping ". As if that were fun. What should one do if a doctor doesn't help? Give up immediately?
       
      • Agree Agree x 4
    7. AUTHOR
      AUTHOR
      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
      Doctors love to treat patients like they are subject of their business but hate it when patients do the same.
       
      • Agree Agree x 2
    8. roy1159
      Suicidal

      roy1159 Member

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      NIHL from working in a noisy cafe' for 2 years
      You probably have some damage to your auditory system and, if you will have the full battery of tests, the damage will be detected. Otherwise don't bother if you are sure it's not somatic, you probably don't have TMJ like many people here think they have.

      You seem to be obsessed with finding the cause so I'm sorry if I offended you, but it's better to accept that there is auditory system damage and move on as you probably will get better like most of the sufferers.

      Also, some people here are in denial regarding what caused their tinnitus, they state unknown reason even though they have damage detected by current tests, in the majority of cases the cause is audiologic.
       
      • Agree Agree x 1
    9. Chinmoku

      Chinmoku Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Started with a cold, possibly worsened by medication/noise
      There's that, but there is also hubris. How dare you go and see someone else? I'm not good enough for you? A few are like that. Given the ton of conditions they cannot help, a little humility would help.
       
    10. AUTHOR
      AUTHOR
      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
      I understand but there is no reason why the hell my ears would have gotten damaged.

      Firstly, I am just 19. I have never been to concerts etc. Minimal to no use of headphones. I think that for such brutal tinnitus there must also be massive damage that I simply don't see where it would come from. I can't believe that ears are so fragile that normal everyday noises would cause such brutal tinnitus, especially when I am so young, so there was not much time to pass to cause so much cumulative damage.

      But on the other hand, I am still in disbelief regarding other possible causes. For this loud cervical spine induced tinnitus, the C spine must have had been damaged so much that I couldn't walk. Plus, my jaw doesn't look that destroyed. I also don't take 10 pills of Aspirin everyday to have such loud tinnitus. I don't take Aspirin at all.

      Simply there is no reason I should have such loud tinnitus. The only thing at the moment I consider is potential TMD, hidden COVID-19 and giant cyst in my sinuses.
       
    11. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      The distress that tinnitus can cause is certainly no fun Chinmoku. There is really no need for person to go doctor shopping, if that doctor is worth their salt. However, a second opinion will probably give a peace of mind that a correct diagnosis has been made.

      Most of us are aware of the tests that are carried out when a person is seen at ENT complaining of tinnitus. It is the doctor's job to detect whether there is an underlying medical problem within the auditory system that is causing the tinnitus. If one cannot be found, there is no point seeking three or more opinions for the same condition as nothing new is likely to be found.

      ENT doctors do not treat tinnitus. Therefore, when there is no underlying medical problem causing it, the patient should be advised to see an Audiologist or Hearing Therapist, that specialises in tinnitus and hyperacusis management. This is particularly necessary when the tinnitus is noise induced. CBT, TRT, counselling, sound therapy using white noise generators, hearing aids, medication. One or combination of these treatments can help a person to manage tinnitus better and hopefully habituate in time.

      Michael.
       
    12. roy1159
      Suicidal

      roy1159 Member

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      NIHL from working in a noisy cafe' for 2 years
      Are you sure you never exposed yourself to excess noise? No headphones at all? No noise from a job you held?

      You should have full audiology evaluation including OAE to objectively detect subclinical damage, I'm more than certain you have some.

      Cumulative damage can show up in teens as well, it's not unheard of. It can take as long as a year for permanent threshold shift to take place, and hearing loss is insidious. Many people think that their hearing is normal when there is substantial damage in place.
       
    13. AUTHOR
      AUTHOR
      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
      No. As I said, no concerts and minimal use of headphones. I am a student. I work in silent environments only. Absolutely no idea how I could get ears damaged. I would understand if I had eyes damaged from reading all the time, but ears?

      I am puzzled. It feels like a person whose liver is destroyed even when they had never drunk alcohol and never takes medication, or like a person who has severely destroyed lungs even when they don't vape or smoke.
       
    14. Sironketchup

      Sironketchup Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      SSHL / Stress / Covid?
      I think tinnitus is in 99% of the cases due to damage in the hearing system. But often the doctors do not detect that damage.

      I think the most common causes are:

      1) cochlear damage (noise damage, sudden hearing loss, virus)

      2) brain damage to the dorsal cochlear nucleus or inferior colliculus (due to neurotransmitter imbalance)
       
    15. roy1159
      Suicidal

      roy1159 Member

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      NIHL from working in a noisy cafe' for 2 years
      Well, instead of speculating to no end you should undergo a battery of audiological tests to prove/disprove cochlear damage and find the cause.

      I can bet the reason is audiological. You might have not assessed your past exposure correctly, or you are denying it.

      Good luck.
       
      • Winner Winner x 1
    16. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      I agree with everything you have said. You have a lot of knowledge and insight into tinnitus. Hope you don't mind me saying so, it's nice to see and well done.
       
    17. Chinmoku

      Chinmoku Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Started with a cold, possibly worsened by medication/noise
      The problem, Michael, is that tinnitus is at the crossroad of otology, audiology, neurology, possibly rheumatology, orthopedic practice, psychiatry etc. In looking for a cause/treatment it is inevitable to go through many specialists. Even if the cause is hearing loss people may react very differently, so there is a neurological component.

      Having said that, I agree seeing too many ENTs at some point leads to diminishing returns and is probably psychologically overwhelming. Second or third opinions might be important, though.
       
    18. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      You have raised some interesting points Chinmoku. One can see all the specialists that you mention for a particular ailment. However, these specialists deal with the medical condition; they don't treat tinnitus. If they have carried out tests and done all that they can in treating the conditions you mention, and a person is still having difficulty coping with tinnitus, they should be referred to an Audiologist that specialises in tinnitus management.
       
    19. DaveFromChicago

      DaveFromChicago Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      An ENT Doctor's Personal Best (or Worst) regarding insufferably obnoxious behavior:

      When I saw him in January 2019, and asked when there might be an effective treatment, he shouted "in about 100 years" and left the examination room.
       
    20. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      The doctor should have shown a better bedside manner towards you. Unfortunately his comments were brought on by pure frustration, because you pinned him into a corner and he lost control. ENT doctors are highly trained physicians. They treat underlying medical problems that cause tinnitus but they don't treat the condition.

      Someone contacted me a while back that said something similar to her ENT doctor. His reply was: "I am not God, what do you expect me to do?". She burst into tears.

      Effective treatment for tinnitus can be: CBT, TRT, Counselling, Mindfulness, Sound therapy, Medication, Relaxation techniques. These are treatments, not cures.

      Michael
       
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