- Dec 7, 2020
- 261
- Tinnitus Since
- 2003
- Cause of Tinnitus
- chemo/barotrauma/noise/autoimmune disorder
Hi, I figured I should do a proper introduction post here.
I have struggled with hearing loss all my life. When I was a baby I was diagnosed with stage 4 neuroblastoma, which has been cured but the chemo left me with sensorineural hearing loss. This has never really depressed me.
Fast forward to March 2019. I had been using headphones a lot the past 5 years leading up to it. I also am a musician and I played at considerable volumes. I developed tinnitus, just a normal ringing of the ears. I habituated within like 2 weeks, it became a non issue.
November 2020: I have a new tinnitus sound solely in my left ear. A low frequency hissing with a dentist drill wavering tone. Same deal as the last one, I panic for a few days but then deal with it. I started taking more care of my ears though.
On Thanksgiving 2020 I developed "head tinnitus" and pretty much identical hissing/oscillating tones in the right ear. Again I'm like "whatever", but I started to become more wary of noise at this point. I also developed reactive tinnitus which lasted a few days.
December 2: I experience diplacusis for the first time. The diplacusis was only in the right ear, the musical note A#5 would produce a double tone about a quarter step sharp on top of the original sound. This was NOT reactive tinnitus, it was rather an actual distortion of how I perceived the sound. The distortion came from the source of the sound.
This disappeared the next day.
But on December 6 the diplacusis returned and it was much worse and at many frequencies. I started to develop "noxacusis" and sounds were becoming extremely, extremely distorted and unintelligible. Life was hell. I simply could not function, my tolerance was maybe 40 decibels. Then while stretching I felt a wave of pressure explode in my right ear and I had lost almost all my hearing. I was not really concerned since this was a very familiar feeling. So I was prescribed Prednisone and Methylprednisolone...
A few days later my sound tolerance went back up and I was no longer getting severely debilitating stabbing pains. My hearing that I lost was restored. Some of the tinnitus tones I developed in November went away and have stayed away. That progress I am proud of at least. But the hearing distortions or "loudness hyperacusis" / "dysacusis" whatever semantic school you belong to has gotten worse. My diplacusis is far less than what it was in early December but there are remnants of it still there. Music and most artificial audio has been ruined for me. Cooking, using silverware, TV, computer usage, etc is very difficult. My tinnitus is basically a non-issue, it's like 3/10 and I would say I have habituated to it. In fact I don't really care about the tinnitus. What i care about is the distortions of sound. They have ruined music for me 100%. Music does not remotely sound like music to me. It's just a giant mess of clipping and high frequencies mashed together and squealing mic feedback, Morse code, diplacusis, Tibetan bowl whistling, etc. These distortions are in any kind of white/pink noise too. I cannot even drive anymore because it's so debilitating. I have been protecting my ears with earplugs and muffs and trying to desensitize myself to very, very quiet sounds but I feel i am making no progress at all. Or, if I am making progress, it's at the most glacial pace.
I really fear though these distortions might be permanent. Since cochlear synaptopathy etc. usually results in this frequency specific distortion. I'm also randomly sensitive to random frequencies akin to what some would describe as "recruitment" but I don't necessarily agree it's the same thing.
I have struggled with hearing loss all my life. When I was a baby I was diagnosed with stage 4 neuroblastoma, which has been cured but the chemo left me with sensorineural hearing loss. This has never really depressed me.
Fast forward to March 2019. I had been using headphones a lot the past 5 years leading up to it. I also am a musician and I played at considerable volumes. I developed tinnitus, just a normal ringing of the ears. I habituated within like 2 weeks, it became a non issue.
November 2020: I have a new tinnitus sound solely in my left ear. A low frequency hissing with a dentist drill wavering tone. Same deal as the last one, I panic for a few days but then deal with it. I started taking more care of my ears though.
On Thanksgiving 2020 I developed "head tinnitus" and pretty much identical hissing/oscillating tones in the right ear. Again I'm like "whatever", but I started to become more wary of noise at this point. I also developed reactive tinnitus which lasted a few days.
December 2: I experience diplacusis for the first time. The diplacusis was only in the right ear, the musical note A#5 would produce a double tone about a quarter step sharp on top of the original sound. This was NOT reactive tinnitus, it was rather an actual distortion of how I perceived the sound. The distortion came from the source of the sound.
This disappeared the next day.
But on December 6 the diplacusis returned and it was much worse and at many frequencies. I started to develop "noxacusis" and sounds were becoming extremely, extremely distorted and unintelligible. Life was hell. I simply could not function, my tolerance was maybe 40 decibels. Then while stretching I felt a wave of pressure explode in my right ear and I had lost almost all my hearing. I was not really concerned since this was a very familiar feeling. So I was prescribed Prednisone and Methylprednisolone...
A few days later my sound tolerance went back up and I was no longer getting severely debilitating stabbing pains. My hearing that I lost was restored. Some of the tinnitus tones I developed in November went away and have stayed away. That progress I am proud of at least. But the hearing distortions or "loudness hyperacusis" / "dysacusis" whatever semantic school you belong to has gotten worse. My diplacusis is far less than what it was in early December but there are remnants of it still there. Music and most artificial audio has been ruined for me. Cooking, using silverware, TV, computer usage, etc is very difficult. My tinnitus is basically a non-issue, it's like 3/10 and I would say I have habituated to it. In fact I don't really care about the tinnitus. What i care about is the distortions of sound. They have ruined music for me 100%. Music does not remotely sound like music to me. It's just a giant mess of clipping and high frequencies mashed together and squealing mic feedback, Morse code, diplacusis, Tibetan bowl whistling, etc. These distortions are in any kind of white/pink noise too. I cannot even drive anymore because it's so debilitating. I have been protecting my ears with earplugs and muffs and trying to desensitize myself to very, very quiet sounds but I feel i am making no progress at all. Or, if I am making progress, it's at the most glacial pace.
I really fear though these distortions might be permanent. Since cochlear synaptopathy etc. usually results in this frequency specific distortion. I'm also randomly sensitive to random frequencies akin to what some would describe as "recruitment" but I don't necessarily agree it's the same thing.
