Clarity on "No Cure" for "Permanent" Hearing Loss Induced Tinnitus?

[gwux]

These are obviously quite sweeping superlatives and not comforting at all for many to read. The general sentiment seems to be that tinnitus from any degree of hearing loss is capital P, Permanent. While that is demonstrably the reality for many of people on forums reporting 10, 20, 40+ years, and my sincere condolences to you, are they an extreme group?

Just because there's no magic bullet or lever to pull for a lot of people, is it really outside of the realm of possibility to hope that tinnitus doesn't get somewhat better for people with hearing loss, and forums make up a vocal (but quite large) minority? Does that really mean it won't naturally fade away as our brain plasticity realised it's not a productive signal or whatever, even to much milder levels? Are our damaged hearing cells really doomed to perpetually transmit a shrill, phantom sound until our last breath? Plenty of people with hearing loss don't have tinnitus, so we know the brain is capable of one without the other.

I'm sorry if this comes off as insensitive or dismissive to the debilitating cases or anyone whose been in the trenches of this for a while -- if it helps, I'm going on 8 years now with Visual Snow Syndrome -- I guess I'm reaching out for support or insight and venting.

Can we draw anecdotally from people outside of the forum bubble, family, friends, doctors, audiologists etc.?

My story, It appears as if COVID-19 took out some of the higher frequencies from my right ear, and I have mild to moderate tinnitus for the past 3 or so months -- slow onset until I realised "Hmmm I can hear this over my Podcast now, wait now my fan can't mask anything and I'm panicking... Wait I hate sitting in this internal meeting room at work". I don't think there's any noise trauma and it's unilateral, I can't really detect the actual loss day to day. Knock on wood. 24M.

My Audiologist - not sure if he was trying to be comforting - did say he's seen people with my level of hearing loss, not prompted by industrial or military noise, have their tinnitus subside. I know It's not productive to measure success by how much you can technically hear it at any one time but more regulating your reaction to it, but in a blue sky clinging to hope kind of way, It's sure nice to daydream about isn't it?

Relevant backstory: I've had Visual Snow since 2014 and know that you can habituate to annoying sensory neurological medical mysteries that essentially no-one in your life can relate to, as dreadful and isolating as the thought seems in the initial months. Don't get me wrong, I still wish it wasn't my reality most days. I'm in that early stage again - never thought I would be again - and haaaating it.

(I already had super mild, low tinnitus from visual snow that could be masked by pretty much any external sound, I just slept with a fan on. I don't expect that to go, the sounds have stacked -- presumably with a different genesis each. This hiss/ring is a different beast.)

 

[mknature]

Thanks for sharing your story. I, too, am in the "hearing loss plus tinnitus" group. I used to scour the Success Stories to try to find someone who still had hearing loss but their tinnitus went away, not just habituated. I don't think I ever found one, unfortunately. I'd love to hear one, just for the happiness it would bring me. I look forward to hearing more about cochlear hair cell regeneration therapies, and Lenire's potential to help folks in the hearing loss category. I'll let you know if I encounter it! Please do the same for me...

 

[Stacken77]

Just because there's no magic bullet or lever to pull for a lot of people, is it really outside of the realm of possibility to hope that tinnitus doesn't get somewhat better for people with hearing loss, and forums make up a vocal (but quite large) minority?

I think most of us agree that improvements are very possible in the majority of cases, complete remission however may be very unlikely. My impression is that complete remission is much more probable in the days immediately after an acoustic event, but chances decrease rapidly as days passes. There are of course outliers, but I agree with the sentiment that the absolute majority of noise induced cases are permanent.

Plenty of people with hearing loss don't have tinnitus, so we know the brain is capable of one without the other.

That's very likely due to predisposition in genetics. The brains of some people are simply wired to generate the phantom sound, while others are not (and can hence shoot guns and blow out their hearing without the slightest tinnitus).

 

[gwux]

Thanks for sharing your story. I, too, am in the "hearing loss plus tinnitus" group. I used to scour the Success Stories to try to find someone who still had hearing loss but their tinnitus went away, not just habituated. I don't think I ever found one, unfortunately. I'd love to hear one, just for the happiness it would bring me. I look forward to hearing more about cochlear hair cell regeneration therapies, and Lenire's potential to help folks in the hearing loss category. I'll let you know if I encounter it! Please do the same for me...

I read once on here of a guy who said that he'd lost some high frequency hearing alongside with acquiring tinnitus, and woke up one day (after a couple of years) to the tinnitus being gone. It would have to be some kind of major anomaly - thinking back now - as I believe he said those frequencies returned as well.

My audiologist was telling me not to put too much weight on waiting for a "cure" as any developments on the hearing loss front would also be good news for the blind and paraplegics. Kind of almost a freeing thought I feel like, not to get hung up on it, but keep fingers crossed that some kind of lateral thinking research can at least tone down the phantom sound perception from the neurological side of things.

In the meantime, positive changes can only mean good things and I guess I'm on the habituation journey again.

 

[gwux]

I think most of us agree that improvements are very possible in the majority of cases, complete remission however may be very unlikely. My impression is that complete remission is much more probable in the days immediately after an acoustic event, but chances decrease rapidly as days passes. There are of course outliers, but I agree with the sentiment that the absolute majority of noise induced cases are permanent.

That's very likely due to predisposition in genetics. The brains of some people are simply wired to generate the phantom sound, while others are not (and can hence shoot guns and blow out their hearing without the slightest tinnitus).

I'll note that there's no acoustic event in my case, but I guess the outcome is the same right... I have hearing loss, an irreversible affliction, of which tinnitus is a symptom — and symptoms can only subside if you address the underlying cause. Far out man. Our bodies and minds are beautiful complex things, it's a shame we've all won the lottery (with much better odds in this case sadly) for one of its more vexing idiosyncrasies.

I guess I'm just grieving that, I've really come to appreciate 'the little things' this past year and a half, they're kind of what life's all about. Small joys. It feels like tinnitus pollutes them. I could be much worse off but this is current mountain ahead of me. You don't realise what you took for granted before.

 

[arctic_penguin]

It is possible in my opinion. I've had it for over 10 years and have woken up to 2 connecting wires and the sound of silence. It only lasted a few seconds, but it is possible.

 

[GuitarMan]

It is possible in my opinion. I've had it for over 10 years and have woken up to 2 connecting wires and the sound of silence. It only lasted a few seconds, but it is possible.

What do you mean by two connecting wires? Is this some device that temporarily silences the tinnitus tone? I can do that by playing a tone at the same frequency as my tinnitus tone for 30 seconds or so, then when I stop playing the tone I don't hear the tinnitus for anywhere between 20 and 45 seconds but if I can grab two wires and silence it that way, I'd love to try it.

 

[GeorgeLG]

I have severe hearing loss above 2 kHz on my audiogram. My ENT looked at my graph and said, there is your tinnitus. I am a little over a year in with loud, variable and very reactive tinnitus and I don't care about it anymore. It bothered me at first but now It does not affect my life. I am not sure if the sounds technically go away, I ignore them or peacefully coexist with them or all of the above. I am aware of the sounds at many times throughout the day but then go back to whatever I am doing. About twice a month it's so loud after the shower that it takes an extra hour to fall asleep. Other than that, it's unimportant to me now. I protect when I should and get on with it. Everybody has a different experience but it's possible for hearing loss and tinnitus to coexist without issue, at least for me.

George

 

[arctic_penguin]

What do you mean by two connecting wires? Is this some device that temporarily silences the tinnitus tone? I can do that by playing a tone at the same frequency as my tinnitus tone for 30 seconds or so, then when I stop playing the tone I don't hear the tinnitus for anywhere between 20 and 45 seconds but if I can grab two wires and silence it that way, I'd love to try it.

The tinnitus tone made a sound that sounded like two connecting wires zapping together. It was from some eardrops I made. The left ear was actually clogged with the drops and the right wasn't. If they were both clogged I may have been cured.

I tried doing that, but it got worse. I don't believe you can cure tinnitus using sounds.

 

[GuitarMan]

The tinnitus tone made a sound that sounded like two connecting wires zapping together. It was from some eardrops I made. The left ear was actually clogged with the drops and the right wasn't. If they were both clogged I may have been cured.

I tried doing that, but it got worse. I don't believe you can cure tinnitus using sounds.

I don't think it can be "cured" with anything unless there is a physical cause and that cause is found and corrected but there does seem to be some evidence that shows some types of sound therapy like notch therapy can greatly reduce the severity of it depending on the kind of tinnitus.

What I described is residual inhibition which I learned about here. It doesn't lead to a cure but it's definitely a curiosity since it seems that there is something that will reduce or eliminate it for very brief periods of time. I've done it a few times when I feel like I absolutely need silence even if it's just for 45 seconds. I'm sure the mechanism behind it has been studied in a search for a cure but I guess it's not something that is useful or would lead to anything other than the 30 or 45 second respite from the screeching.

 

[arctic_penguin]

I don't think it can be "cured" with anything unless there is a physical cause and that cause is found and corrected but there does seem to be some evidence that shows some types of sound therapy like notch therapy can greatly reduce the severity of it depending on the kind of tinnitus.

What I described is residual inhibition which I learned about here. It doesn't lead to a cure but it's definitely a curiosity since it seems that there is something that will reduce or eliminate it for very brief periods of time. I've done it a few times when I feel like I absolutely need silence even if it's just for 45 seconds. I'm sure the mechanism behind it has been studied in a search for a cure but I guess it's not something that is useful or would lead to anything other than the 30 or 45 second respite from the screeching.

That may be true, since it can reduce the severity, but the industry doesn't seem to care much. With the drops I made from pine nuts, castor oil, and vinegar I experienced actual silence (not just a reduction). I was close to a cure, but there was one issue. That night the medication was lodged in my left ear, like when you get water clogged. When I woke up I heard the zap noise like connecting 2 wires and the left completely silenced and the right went from a 7/10 to a 0.2/10. But, the 2 hemispheres of the brain relate, and the little but that was left in the right made it slowly come back to about a 2 or 3/10. That's my story and I do hope for a cure since I experienced it and believe it is possible. Perhaps, it may be possible with notch therapy as well, and I shouldn't have been dismissive.

Perhaps Ketamine plus notch therapy.

 

[GeorgeLG]

That may be true, since it can reduce the severity, but the industry doesn't seem to care much. With the drops I made from pine nuts, castor oil, and vinegar I experienced actual silence (not just a reduction). I was close to a cure, but there was one issue. That night the medication was lodged in my left ear, like when you get water clogged. When I woke up I heard the zap noise like connecting 2 wires and the left completely silenced and the right went from a 7/10 to a 0.2/10. But, the 2 hemispheres of the brain relate, and the little but that was left in the right made it slowly come back to about a 2 or 3/10. That's my story and I do hope for a cure since I experienced it and believe it is possible. Perhaps, it may be possible with notch therapy as well, and I shouldn't have been dismissive.

Perhaps Ketamine plus notch therapy.

How did you choose those ear drop ingredients?

George

 

[Jonnie]

That may be true, since it can reduce the severity, but the industry doesn't seem to care much. With the drops I made from pine nuts, castor oil, and vinegar I experienced actual silence (not just a reduction). I was close to a cure, but there was one issue. That night the medication was lodged in my left ear, like when you get water clogged. When I woke up I heard the zap noise like connecting 2 wires and the left completely silenced and the right went from a 7/10 to a 0.2/10. But, the 2 hemispheres of the brain relate, and the little but that was left in the right made it slowly come back to about a 2 or 3/10. That's my story and I do hope for a cure since I experienced it and believe it is possible. Perhaps, it may be possible with notch therapy as well, and I shouldn't have been dismissive.

Perhaps Ketamine plus notch therapy.

I have read some articles that say Ketamine/MDMA/Psilocybin may have some positive effects on tinnitus. Have you tried any of these?

 

[BrysonKingMe]

I have read some articles that say Ketamine/MDMA/Psilocybin may have some positive effects on tinnitus. Have you tried any of these?

I have tried all of these with mild tinnitus and loud tinnitus.

My experience:

Ketamine: temporary spike, enjoyable nonetheless in responsible doses.
MDMA: Completely silences my tinnitus before coming back tenfold, albeit temporary.
Psilocybin: Did this on a good day, no effect on tinnitus. Also enjoyable.

 

[arctic_penguin]

I have read some articles that say Ketamine/MDMA/Psilocybin may have some positive effects on tinnitus. Have you tried any of these?

I've had mushrooms before my tinnitus became severe and I don't think it had any effect. With the current severe reactive form I have now, I get panic attacks on weed, let alone mushshrooms. The others I haven't tried.