Anecdotal Evidence of Tinnitus Wiring in the Brain?

Discussion in 'Support' started by kingsfan, Feb 6, 2022.

    1. kingsfan
      Haunting

      kingsfan Member Benefactor Hall of Fame

      Location:
      A town near you
      Tinnitus Since:
      9-17-2020
      Cause of Tinnitus:
      turning everything up to 11
      Alright party people. I've noticed, over time, some odd behavior in my tinnitus I incurred from a crappy acoustic reflex test back in 2020 that I think backs up the theory of tinnitus starting in the ears and eventual plasticizing in the brain.

      I do have tinnitus in both ears, though it was originally only hissing and static sounds which was worse in my right ear. After the acoustic trauma from the audiologist, a pure tone ring began in my left which eventually morphed into 2 and then 3 different pure tones. Now my left is the worse ear, though my right ear is beginning to compete for equality these days.

      The first couple of months, when lying in bed, I could put either ear to my pillow and the masking sounds I used would mask the pure tones in my left ear. Even if I placed my left ear to the pillow, as long as my right ear could clearly hear the masking sounds from my stereo, my left ear would be masked.

      After those first initial months this all changed. Now I can only mask my left ear if it, alone, hears the masking sounds. So I can never put my left ear on the pillow anymore. Strangely, if I put my right ear on the pillow.. even though my left ear is masked, I then start to hear the tones from my left ear IN my right ear. This only happens if my left ear is being masked by sound and then plugging my right ear. If I plug my right ear, then turn off the masking, the tinnitus immediately switches back to the left ear.
       
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    2. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      @kingsfan, this is exactly what I’ve been looking for, so you believe that your tinitus is becoming centralized? I’ve read a few older posts and it seems there’s much debate about how once tinnitus is centralized that it’s “harder to treat” or falls under the Schulman protocol at that point. I’d love to know what some of the senior members think about this.

      I do think outside of noise trauma tinnitus is a “brain problem” for the rest of us. Mine started as centralized and each day that passes I wonder how I’m going to survive this. Hope others can chime in.
       
    3. AUTHOR
      AUTHOR
      kingsfan
      Haunting

      kingsfan Member Benefactor Hall of Fame

      Location:
      A town near you
      Tinnitus Since:
      9-17-2020
      Cause of Tinnitus:
      turning everything up to 11
      I believe it became centralized somewhere around months 2 and 3. I had the acoustic trauma near the end of October (20-22) and by the time I moved into a new apartment around December 25 of that same year I remember noticing I could no longer mask it in bed the same way I had been before. From then on I had to sleep without turning either ear against the pillow or the ringing would appear in which ever ear was against it.

      I have a lot of different sounds in each ear and some that feel like they come from the middle of my brain, but these particular tones in my left ear are really what have been disabling me for the past ~17 months now.
       
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    4. makeyourownluck
      Magical

      makeyourownluck Member Podcast Patron Benefactor Hall of Fame

      Location:
      Scotland
      Tinnitus Since:
      07/2021
      Cause of Tinnitus:
      Unknown
      @kingsfan, @IntotheBlue03, I have seen many people mention that their tinnitus became centralised over time. It’s odd because my tinnitus has not shifted, and after 7 months it still feels like someone is blowing a dog whistle right into my ear. Does this mean that my brain has not learned the sound yet? Do either of you have hearing loss?
       
    5. AUTHOR
      AUTHOR
      kingsfan
      Haunting

      kingsfan Member Benefactor Hall of Fame

      Location:
      A town near you
      Tinnitus Since:
      9-17-2020
      Cause of Tinnitus:
      turning everything up to 11
      I was referring to centralized as in, tinnitus setting in permanently rather than it just being hyperactive neurons in the auditory cortex. I still hear different sounds separately in each ear, but their behavior is different than it was in the first couple of months.
       
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    6. 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 not sure I understand what you mean by permanently vs hyperactive neurons?

      I thought it was the neurons making the noise.

      I had tinnitus for well over 2 years after a loud ACDC concert and it eventually went away.
       
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    7. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Hi @Forever hopeful, was your tinnitus ever centralized or in the middle of your head as opposed to your ears during that time?
       
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    8. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      @makeyourownluck, I’m not sure as I haven’t really found any hard and fast data to prove anything regarding centralized tinnitus being permanent “brain” tinnitus. I only have ultra high frequency hearing loss (16 kHz) which is fairly normal at 36 and for normal aging. Other than that no.
       
    9. 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
      Sometimes. It is a different sound. Like a rumble. Only in absolute dead silence now and then. Not always.
       
    10. AUTHOR
      AUTHOR
      kingsfan
      Haunting

      kingsfan Member Benefactor Hall of Fame

      Location:
      A town near you
      Tinnitus Since:
      9-17-2020
      Cause of Tinnitus:
      turning everything up to 11
      I think the term "central" is being used differently amongst us in this thread. The following is what I am referring to:

      “Central tinnitus” refers to the auditory perception that is generated in auditory brain centers by the aberrant neural activity and is sustained by that aberrant neural activity.

      “Peripheral tinnitus” refers to the auditory perception that results from aberrant neural activity at the cochlear level and transmitted through the auditory pathways​

       
    11. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      My friend had head tinnitus. LDN eliminated it so I don't believe that it is stuck in the brain.
       
    12. 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
      Thanks. At the cochlear level, meaning in the ear? Very interesting. I thought all tinnitus came from the brain.
       
    13. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      That’s interesting. I read in some of your prior posts you had a high frequency/high pitched tone that was very distressing, sorry to hear that as I can relate. Has that improved for you, I hope?
       
    14. star-affinity
      Wishful

      star-affinity Member Podcast Patron Benefactor

      Tinnitus Since:
      1993, increase in 2020, then new in 2021
      Cause of Tinnitus:
      Unsure about the first. Too many beers? Music during sleep.
      Wait a minute – when you say centralized do you mean the sound is perceived more as coming from the head rather than the ears? I always thought what was meant by centralized is that it is the brain that maintains the sound and not the inner ear, despite damage to the inner ear being the culprit of the tinnitus.

      At the same time it is always the brain that creates the perception of sound based on input from the inner ear, so it sure can be a bit confusing. :)

      The intrusive high pitch tinnitus I have since about 10 months now is behaving more or less the same – still feels very much like the sound is coming from my left inner ear. Maybe my tinnitus is still centralized? I don't know...
       
    15. makeyourownluck
      Magical

      makeyourownluck Member Podcast Patron Benefactor Hall of Fame

      Location:
      Scotland
      Tinnitus Since:
      07/2021
      Cause of Tinnitus:
      Unknown
      I thought this too, but I think what @kingsfan is saying (please correct me if I’m wrong), is that tones can still be perceived in the ears even with central tinnitus. Central tinnitus just means that the neural activity in the brain is generating the sound, not a lack of auditory input cause by damage to the inner ear.
       
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    16. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Yes, I meant it’s perceived from your head instead of your ears. My tinnitus which is also high frequency and reactive has always been in my head since onset. I’ve seen anecdotal claims on here of folks’ tinnitus transitioning from their ears to their head after a period of time and then once it’s there claims that it’s permanent and won’t resolve even if the cause is addressed but I haven’t found any data or research to back this up. I believe this ties into the Schulman Protocol that I don’t know much about and have to look into.
       
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    17. AUTHOR
      AUTHOR
      kingsfan
      Haunting

      kingsfan Member Benefactor Hall of Fame

      Location:
      A town near you
      Tinnitus Since:
      9-17-2020
      Cause of Tinnitus:
      turning everything up to 11
      @star-affinity, @makeyourownluck, @IntotheBlue03:

      “Central tinnitus” refers to the auditory perception that is generated in auditory brain centers by the aberrant neural activity and is sustained by that aberrant neural activity.

      “Peripheral tinnitus” refers to the auditory perception that results from aberrant neural activity at the cochlear level and transmitted through the auditory pathways
      In my opinion, it doesn't refer to where you are hearing the tinnitus - whether it's in an ear or in the center of your head. This is why I noted changes to how my tinnitus could be masked over time even though the actual location of the sounds have never changed, leading me to believe I experienced it changing from "Peripheral" to "Central."
       
    18. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Hi @kingsfan, thanks for the clarification, that definitely helps.

      By auditory brain centers for central tinnitus, do you mean, for example, the DCN/brain stem, etc?

      Just trying to differentiate between the cochlear level and the brain level. I’m assuming cochlear level refers to the cochlea/inner ear itself. Forgive this oversimplification.
       
    19. makeyourownluck
      Magical

      makeyourownluck Member Podcast Patron Benefactor Hall of Fame

      Location:
      Scotland
      Tinnitus Since:
      07/2021
      Cause of Tinnitus:
      Unknown
      I’ve been thinking about this. I have 2 different tones, one in each ear, but when I put either ear on the pillow I will hear both tones. I always though that this was because I had both tones in both ears, but during my brain only perceives a tone in the loudest. Almost like the louder ear masks the other. Maybe you have these tones in your right ear but they are just very quiet?
       
    20. AUTHOR
      AUTHOR
      kingsfan
      Haunting

      kingsfan Member Benefactor Hall of Fame

      Location:
      A town near you
      Tinnitus Since:
      9-17-2020
      Cause of Tinnitus:
      turning everything up to 11
      Yes, I think auditory brain centers = DCN.

      So Central tinnitus would be in the DNC, peripheral would be in the cochlea.

      Noise trauma, ototoxicity, or infection causes damage to hair cells or synapses > which causes excitotoxicity > affected neurons fire uncontrollably until they die > becomes centralized in the DCN and is no longer being triggered by the axons in the cochlea.

      Something like that.

      Wish I would have known about NAC when my tinnitus first spiked.
       
    21. AUTHOR
      AUTHOR
      kingsfan
      Haunting

      kingsfan Member Benefactor Hall of Fame

      Location:
      A town near you
      Tinnitus Since:
      9-17-2020
      Cause of Tinnitus:
      turning everything up to 11
      I have thought about that, but I'm not entirely convinced.
       
    22. 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
      Thank you. My high frequency tinnitus varies in pitch and loudness. Sometimes it gets bad and then it will be pretty good and manageable for stretches of time.
       
    23. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Oh I’m so happy to hear. That must be hard to habituate to though. Was it always variable from the beginning?
       
    24. 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
      When I first got tinnitus after the AC/DC concert in 2015, it didn’t fluctuate and it never changed. It as just the same noise all the time. Both ears. Then It went away after about two years. Then I got it back in my left ear in early 2020 because I had a dip in my hearing. It sounded like an echo. It never changed and never fluctuated and that tone remained for 11 months. Then I had another dip in hearing in that same ear and it changed to a pure tone ring that lasted about 3 to 4 months. My hearing recovered and it went away.

      My current bilateral high-pitched tinnitus came on around the spring of 2020. It was very quiet at first and it was just sort of a subtle static noise. It’s starting to fluctuate to hiss and some days it got really loud and it would go on for a couple of months and then it would resolve for several months. It’s changed over the past year and has become more high-pitched. I experience it more in my right ear than my left. It is very hard to habituate to because some days it’s barely noticeable and other days it’s awful. I can hear it over everything.
       
    25. CC_16

      CC_16 Member

      Tinnitus Since:
      03/2022
      Cause of Tinnitus:
      Upper respiratory infection
      Did you ever encounter spikes during those 2 years before it eventually went away?

      If yes, how long did the spikes last?
       
    26. 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
      No spikes.
       
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