Constant Fight to Prevent Worsening of Tinnitus and Hyperacusis Is Worthless

[haha ear go eeee]

@Adaś, how are you doing 3 years later? Worse? Better? Same? I've been asking myself these very same questions.

Of course, I got the same advice... From the ENT and the tinnitus "expert" Dr. Hubbard (what a joke). Like, I tried to find some middle ground, taking it careful, but not going crazy. Basically I use custom molded earplugs with 25 dB filter when driving the car 98% of the time, or when being outside, except for walks in the woods. I am not home, not working currently. I live in a fairly quiet rural area, there is a road nearby and some traffic noise, annoying for sure (like motorbikes), but certainly not loud when inside the house. At home I do not plug up, but I do stay away from vacuums, etc. My hyperacusis and reactive tinnitus means I am bothered by A/C noise, but I deal with it, or just move to quieter parts of the house. I have managed to avoid any louder noises since at least April.

Yet I slowly seem to be worsening. And am increasingly tired and worried where this is going. I am basically trying to give myself 2-3 years to see what really happens in my case (I am 8 months in). If this continues to worsen, or frankly even if this stays the way it is, I don't think I'll want to live like this any more.

Indeed, where are people like us in the real world? Now I have met many people with tinnitus (never before) and they seem to live "normally". Like a friend who apparently had super mild tinnitus before but got a bad case two months after me (and after my warning!). He got bad tinnitus and hyperacusis from hammering some nails. But he flies all over the world, goes windsurfing, racing his car on track, drives to work, etc. He uses earplugs in his louder car, but that's it. He says it's "annoying" but it is not going to stop him.

WTF is wrong with us indeed? I just do not understand it. Is it in our heads, because we keep reading about it here and keep ruminating?

Something must be going on with us that's different than the majority of the population that do have tinnitus.

I'm guessing if you have reactive tinnitus, it means that you're susceptible to getting hyperacusis/noxacusis later down the line because both conditions involve the type II afferents I believe. That's probably why we get it more severely and typical treatments don't work for us usually.

 

[gameover]

Something must be going on with us that's different than the majority of the population that do have tinnitus.

I'm guessing if you have reactive tinnitus, it means that you're susceptible to getting hyperacusis/noxacusis later down the line because both conditions involve the type II afferents I believe. That's probably why we get it more severely and typical treatments don't work for us usually.

Yeah, my tinnitus was reactive almost from day one. No pain, but mild burning/warmth sensation started to show very occasionally a few months after the onset. Still rare, but there. Like yesterday after meeting someone and talking for an extended amount of time, I had a spike and burning sensation in the evening.

I suppose what makes us different is the extent of the damage AND our brain's inability to cope. For those folks that went straight to pain hyperacusis (noxacusis), it could be just the former, i.e. maybe your brain would cope alright even with loud tinnitus, but nobody's brain can deal with noxacusis.

 

[MindOverMatter]

I'm guessing if you have reactive tinnitus, it means that you're susceptible to getting hyperacusis/noxacusis later down the line

Well, I can't really relate to your guessing at all. To me, hyperacusis and reactive tinnitus is synergistic - and to my knowledge (and personal experience) they often occur and "work" together.

To me, reactive tinnitus is a subset of sound sensitivity.

Once my sound sensitivity got better, my reactive tinnitus also got better.

 

[RunningMan]

Who knows how "bad" his bad tinnitus is. This is all so subjective.

Exactly. That's just like my doctor who said he has it and just ignores it, like I should be able to do the same thing. Except, most people have mild tinnitus that they don't hear over outdoor traffic, over the crickets, over the TV, etc. So, it's not the same thing. I had that for many years, and that was not an issue. It's the sudden change I experienced in February 2022 that took me over the threshold and caused a lot of distress.

 

[gameover]

What do mean @gameover? In our heads because we're always thinking about it?

Who knows how "bad" his bad tinnitus is. This is all so subjective.

Yeah, being obsessed and always thinking about it. Like I know my tinnitus changes regardless of my thoughts; it is bad in the morning when I don't feel like living, then it gets better later, and I resume my limited life, etc. I know it is not because of what I think or feel. People say tinnitus is stress dependent. For me - BS. I am not seeing that, at least it is not a significant factor. But the constant thinking reinforces it over long term - maybe? My wife is telling me that now after months of thinking about ear issues, she feels her ear is off (feeling kinda full), and it wasn't before...

How bad my friend's tinnitus is, indeed impossible to know. He says he hears it always.

 

[tpj]

Yeah, being obsessed and always thinking about it. Like I know my tinnitus changes regardless of my thoughts; it is bad in the morning when I don't feel like living, then it gets better later, and I resume my limited life, etc. I know it is not because of what I think or feel. People say tinnitus is stress dependent. For me - BS. I am not seeing that, at least it is not a significant factor. But the constant thinking reinforces it over long term - maybe? My wife is telling me that now after months of thinking about ear issues, she feels her ear is off (feeling kinda full), and it wasn't before...

How bad my friend's tinnitus is, indeed impossible to know. He says he hears it always.

I don't believe in the psychological aspect of tinnitus. My tinnitus is piercing and intrusive. I don't need to think or obsess about it. It's just there, constant, regardless of what I think or how I feel.

 

[Loui]

@Adaś, how are you doing 3 years later? Worse? Better? Same? I've been asking myself these very same questions.

Of course, I got the same advice... From the ENT and the tinnitus "expert" Dr. Hubbard (what a joke). Like, I tried to find some middle ground, taking it careful, but not going crazy. Basically I use custom molded earplugs with 25 dB filter when driving the car 98% of the time, or when being outside, except for walks in the woods. I am not home, not working currently. I live in a fairly quiet rural area, there is a road nearby and some traffic noise, annoying for sure (like motorbikes), but certainly not loud when inside the house. At home I do not plug up, but I do stay away from vacuums, etc. My hyperacusis and reactive tinnitus means I am bothered by A/C noise, but I deal with it, or just move to quieter parts of the house. I have managed to avoid any louder noises since at least April.

Yet I slowly seem to be worsening. And am increasingly tired and worried where this is going. I am basically trying to give myself 2-3 years to see what really happens in my case (I am 8 months in). If this continues to worsen, or frankly even if this stays the way it is, I don't think I'll want to live like this any more.

Indeed, where are people like us in the real world? Now I have met many people with tinnitus (never before) and they seem to live "normally". Like a friend who apparently had super mild tinnitus before but got a bad case two months after me (and after my warning!). He got bad tinnitus and hyperacusis from hammering some nails. But he flies all over the world, goes windsurfing, racing his car on track, drives to work, etc. He uses earplugs in his louder car, but that's it. He says it's "annoying" but it is not going to stop him.

WTF is wrong with us indeed? I just do not understand it. Is it in our heads, because we keep reading about it here and keep ruminating.

I think a lot of people suffer from tinnitus and hyperacusis in silence (no pun intended). Most people can't afford not to work and just have to find a way to pass through life. I'm bothered by my tinnitus every day and would say I have mild hyperacusis. I'm 34 years old. I have no choice but to try to live my life to the best of my ability. I think it's the same for most people.

There are other chronic illnesses in this world. People suffer every day. That's the reality.

 

[ZFire]

Well, I can't really relate to your guessing at all. To me, hyperacusis and reactive tinnitus is synergistic - and to my knowledge (and personal experience) they often occur and "work" together.

To me, reactive tinnitus is a subset of sound sensitivity.

Once my sound sensitivity got better, my reactive tinnitus also got better.

The same case for me as well. Reactive tinnitus and hyperacusis (heightened sensitivity to sound) both emerged shortly after my tinnitus worsened.

I've been dealing with two distinct forms of reactive tinnitus for over 2 years now. Similar to your experience, the first form of reactive tinnitus known as the spiking variation got better once the sound sensitivity improved. There was a noticeable connection between sound sensitivity and the likelihood of experiencing frequent tinnitus spikes. I know plenty of others here, such as yourself, share the same sentiment.

I'm still left with the other form of reactive tinnitus, where specific continuous external noise will trigger my tinnitus instantly, but the reactivity ceases once the sound source is gone. To be honest, I'm not sure if this variation is related to hyperacusis at all. It's not bothersome whatsoever, particularly in relation to sound sensitivity or discomfort. It's just there, does what it wants. It's simply a matter of perception. I'm thinking it's more of an electrical signaling problem in the brain. Definitely shares no connection to noxacusis.

The claims that reactive tinnitus serves as a precursor to noxacusis/pain hyperacusis make absolutely no sense to me. My tinnitus is always instantly reacting everyday (even through hearing protection) to certain sounds. It's not something I can avoid, but not once have I ever experienced or developed any kind of prolonged burning or stabbing pain sensations.

 

[gameover]

I don't believe in the psychological aspect of tinnitus. My tinnitus is piercing and intrusive. I don't need to think or obsess about it. It's just there, constant, regardless of what I think or how I feel.

So I don't, either, but I begin to again doubt myself. Obviously this starts as a physical damage to the ear, there is no question about it (at least for noise induced cases). Then the brain maladaptation occurs. How much the maladaptation is from the emotional and/or cognitive state? The damn brain is one damn cluster of crap nobody truly understands. The reports on pain being made worse by central sensitizations are intriguing. There are reports on this forum (e.g., @Marin) and elsewhere indicating so.

I think a lot of people suffer from tinnitus and hyperacusis in silence (no pun intended). Most people can't afford not to work and just have to find a way to pass through life. I'm bothered by my tinnitus every day and would say I have mild hyperacusis. I'm 34 years old. I have no choice but to try to live my life to the best of my ability. I think it's the same for most people.

There are other chronic illnesses in this world. People suffer every day. That's the reality.

I guess it is the reality. I wasn't implying everyone on this forum sits at home and is stuck online complaining (like me). I guess we truly can't know the severity of another's situation. Whether they talk about or indeed suffer "in silence" is maybe another matter. It really seems that not talking about it is part of the strategy of coping, conscious or not. Is it personality dependent? Like some people find relief in talking? But even they would find relief in burying the issue (at least after the initial period of talking about it)? I really have no idea anymore. Just rambling, I guess.

 

[Loui]

So I don't, either, but I begin to again doubt myself. Obviously this starts as a physical damage to the ear, there is no question about it (at least for noise induced cases). Then the brain maladaptation occurs. How much the maladaptation is from the emotional and/or cognitive state? The damn brain is one damn cluster of crap nobody truly understands. The reports on pain being made worse by central sensitizations are intriguing. There are reports on this forum (e.g., @Marin) and elsewhere indicating so.

I guess it is the reality. I wasn't implying everyone on this forum sits at home and is stuck online complaining (like me). I guess we truly can't know the severity of another's situation. Whether they talk about or indeed suffer "in silence" is maybe another matter. It really seems that not talking about it is part of the strategy of coping, conscious or not. Is it personality dependent? Like some people find relief in talking? But even they would find relief in burying the issue (at least after the initial period of talking about it)? I really have no idea anymore. Just rambling, I guess.

I've spoken a lot about my hearing issues but in the end, people who don't suffer from these afflictions don't really get it. I just try to live my life, suffering through every day and hoping for treatments in the future. We only have one life. My advice would be to try to go on with life. The tinnitus might stay the same, get better or worse. We should live for today because our days are numbered, with or without disease.

Maybe you should take a break for this forum? I for sure will for an unforeseeable amount of time.

 

[MindOverMatter]

I've spoken a lot about my hearing issues but in the end, people who don't suffer from these afflictions don't really get it. I just try to live my life, suffering through every day and hoping for treatments in the future. We only have one life. My advice would be to try to go on with life. The tinnitus might stay the same, get better or worse. We should live for today because our days are numbered, with or without disease.

Maybe you should take a break for this forum? I for sure will for an unforeseeable amount of time.

Yes @Loui, our days our numbered with or without any sort of affliction.

Today is what we got, tomorrow is unknown. No one knows what the future holds.

Personally I try to hold focus on what is good in my life, and what gives me joy. I try not to dwell too much about what was, and what if, but sometimes it is unavoidable.

I rather focus on the now, on today, on what I can do to get that feeling that it was a good day. No matter the state I am in.

Some days are less good than others, but this is part of life. No matter the affliction.

 

[Strawberryblonde]

My advice would be to try to go on with life. The tinnitus might stay the same, get better or worse.

I completely agree. I lived my life like normal till my increase in tinnitus volume. I should think the same as I did last time and carry on with life (tinnitus only got better, not worse). Come what may. Of course this time with earplugs tagging along in my daily life

 

[Watasha]

@Adaś, how are you doing 3 years later? Worse? Better? Same? I've been asking myself these very same questions.

Of course, I got the same advice... From the ENT and the tinnitus "expert" Dr. Hubbard (what a joke).

Bad experience with Dr. Hubbard?

 

[gameover]

Bad experience with Dr. Hubbard?

Yeah, search my posts for more details. His advice is useless and potentially harmful. Quote "it is just a fucking noise". You're supposed to just go live "normally". You don't need hearing protection unless "you need to shout to talk". Or just "take an antidepressant, nobody's tinnitus ever got worse from antidepressant".

This is pretty complete summary what you will get for $250/h from Dr. Bruce Hubbard, plus some boring lecture with questionable statistics about tinnitus (and of course how great and proven CBT is).

Seriously, one will be better off spending money on some placebo supplements.

 

[crescentsky]

Of course, I got the same advice... From the ENT and the tinnitus "expert" Dr. Hubbard (what a joke).

Bad experience with Dr. Hubbard?

I'm glad I'm not the only one that feels this way. I had a couple of sessions with him and I found him very insensitive. He even told me that I should be glad at at 33 (at the time), tinnitus was my problem and not other issues like cancer or car accident. He made me fill out a questionnaire/paperwork, but didn't even bother reading it and he never seemed to be able to remember my name/called me the wrong name during my sessions. Ha.