Why It's Not Helpful to Tell People "You're Lucky Your Tinnitus/Hyperacusis Isn't Worse."

[jasonbourne]

Except that i do get it, and I wrote that balance is good, there are enough misery here to spread around...introducing a bit of positivity is not bad. You can still be positive while responsibly protecting your ears, and continue with your life.

ok good, keep the balance up.

 

[Red]

You just dont get it do you. Positivity is fine. Reckless positivity isnt. If youre morbidly fat and you go to the doctors they will tell you to lose weight, I will tell you to lose weight and give them tips and stories etc. You? You would go on about health at every size and if they get a heart attack you wont even care. You will think you did a good thing.

It's taken a lot of posts to find out you agree with Coffee Girl and me.

How much more helpful can I be? You havnt asked for anything yet im trying.

To stop dominating this thread. You've made your case.

 

[jasonbourne]

It's taken a lot of posts to find out you agree with Coffee Girl and me.



To stop dominating this thread. You've made your case.

Cool maybe I misunderstood. Good luck.

 

[Lane]

Plus I still have some intermittent ear pain, but that's becoming less frequent as time goes by.

Hi @Emperor-Drax

A few days ago, I got an upper cervical adjustment to my C1 vertebra (called AtlasProfilax). It's led to a significant lessening of my own intermittent ear pain. It's also positively impacted my Eustacian Tube dysfunction.

I recently got a home mHBOT unit, and my ears were having significant problems adjusting to the changing pressures. Those problems went away after my neck adjustment. I don't think the AtlasProfilax is the only technique that might help. I'm guessing other upper cervical adjustments could likely help as well. Although I am partial to the AP. -- Best!

 

[Layla23]

I strongly feel like the advice on these forums ruined my life.

I was always a passive person so when I read veterans posting things like "it gets better and don't over protect" I listened because I didn't have the guts to listen to my own intuition. That's what a passive person does....they don't have enough confidence in themselves to trust themselves. They seek external advice/opinions for everything. My tinnitus was no exception. I trusted the opinions of others more than my own.

My mild T turned into reactive tinnitus from hell, H, visual snow, and palipnosia. All from acoustic traumas. I don't have Lyme, I don't have MS, and I don't have cancer.

I'm only 23.

I agree it's crucical to not over protect your ears but I feel like that information was irresponsibly misconstrued on these sites. If your ears are damaged you should not follow the normal noise guidelines people with healthy ears follow. Genetically speaking as well, your ears are probably also not as strong as others and should have followed a lower decibel guideline to begin with.


I don't advocate living like a hermit either. Or living in fear. But it's irresponsible the way some of you claim "X noise levels can't hurt you". Everyone is different.


BALANCE is key. LISTEN to your body.


P.S. I will add that you can always improve too. But not becoming complacent to noise is key (in my opinion).

 

[Red]

I strongly feel like the advice on these forums ruined my life.

I was always a passive person so when I read veterans posting things like "it gets better and don't over protect" I listened because I didn't have the guts to listen to my own intuition. That's what a passive person does....they don't have enough confidence in themselves to trust themselves. They seek external advice/opinions for everything. My tinnitus was no exception. I trusted the opinions of others more than my own.

My mild T turned into reactive tinnitus from hell, H, visual snow, and palipnosia. All from acoustic traumas. I don't have Lyme, I don't have MS, and I don't have cancer.

I'm only 23.

I agree it's crucical to not over protect your ears but I feel like that information was irresponsibly misconstrued on these sites. If your ears are damaged you should not follow the normal noise guidelines people with healthy ears follow. Genetically speaking as well, your ears are probably also not as strong as others and should have followed a lower decibel guideline to begin with.


I don't advocate living like a hermit either. Or living in fear. But it's irresponsible the way some of you claim "X noise levels can't hurt you". Everyone is different.


BALANCE is key. LISTEN to your body.


P.S. I will add that you can always improve too. But not becoming complacent to noise is key (in my opinion).

What did you do that made your tinnitus worse?

 

[Telis]

I think you can improve, I had major improvements after 4.5 years, I thought I was done here at TT forever until a recent noise trauma. Now I'm back unfortunately. I have to believe I will get better, if I thought it would stay at this level forever, I would off myself right now, there is no getting used to this. I'm not except from noise torture, I'm only human. People get better all the time, not habituate, but see improvements, its very common. Your tinnitus should get to a manageable level over time, mine was still very annoying after the reduction, still loud by most people's standards I'm sure, could easily hear it all the time but I could get through the day alright, hoping and believing this will happen again.

 

[Layla23]

@Red

Long long long story.


And you can get better. Not even just habituation but actually get better.

But if you're not careful and become complacent you can also get so much worse.

That's the point I want to get across. And that for me personally I don't expose myself to constant sounds louder than 70 decibels except when I'm in the shower.

 

[Lane]

I feel like that information was irresponsibly misconstrued on these sites.

Thanks @Layla23 for stating that so explicitly--something that I feel should be stated more consistently on this forum. I've felt the same as you about this, but don't believe I've ever spoken out against it against those that argue so vociferously against "over protection", and "living in fear".

@Bill Bauer mentions this often, but is usually shot down for his overly "pessimistic" and/or "paranoid" viewpoints. I've always felt very similarly to him, and believe that in the first few months after initial onset, on through the first 1-2 years, errors in protection should always be on the cautious and protective side. And of course, vigilance will be required for the rest of our lives.

 

[Red]

@Red

Long long long story.


And you can get better. Not even just habituation but actually get better.

But if you're not careful and become complacent you can also get so much worse.

That's the point I want to get across. And that for me personally I don't expose myself to constant sounds louder than 70 decibels except when I'm in the shower.

Would you be willing to share your story in a PM or do you have one in posted thread?
I'd really like to learn from your experience as I am more frightened of bad H than bad T.

 

[coffee_girl]

There should be a giant banner on this forum that tells people that all information on this site are opinions and not medical advice.

 

[Lane]

There should be a giant banner on this forum that tells people that all information on this site are opinions and not medical advice.

And that sometimes the more certainty with which a person states their opinion, the more likely it is they're probably wrong. Not too many certainties when it comes to tinnitus/hyperacusis--except perhaps that you're almost guaranteed to experience the uncertainty and unpredictability of it all. I think about the best we can do is consistently try to tilt the odds in our favor as best we can.

 

[Layla23]

@Red

That's one aspect I do agree with TRT therapy (among a few other things). You have to let go of that fear as much as you can. I protect myself from loud sounds (lower than what TRT recommends but I don't care since it has helped me) but I don't fear my H.

 

[Layla23]

Whoops I accidentally deleted my post @Red

I won't repeat it but ultimately please listen to your body. Your symptoms and triggers will be different than mine. So no matter what advice I give, it might not help you.

Shoot it might even hurt you. So listen to your own body.

 

[kmohoruk]

It's definitely a tough balance. Since I had my initial trauma 4 years ago, I was managing my T and H pretty well. But I definitely agree with @Layla23 regarding it tough being a more passive person (which I am) - especially in work place/social environment sometimes.

The toughest part I find is dealing with the sudden sounds. Auto lock car horns, dropped plates, fire alarms - it can definitely be tough. The acoustic trauma (small boat horn) that caused a flare in my T and H was a straight fluke as it was from a docked dinghy.

I really like your advice there Layla - "listen to your body" and "balance is key". It's straight forward, simple and very true.

Sometimes we just have to keep the hope going that things will get better like what @Telis said. Time can do wonders as well as the plasticity of the brain. That's where I put a lot of my stock anyways.

 

[coffee_girl]

And that sometimes the more certainty with which a person states their opinion, the more likely it is that they're probably wrong. Not too many certainties when it comes to tinnitus/hyperacusis, except perhaps that you're almost guaranteed to experience the uncertainty and unpredictability of it all.

I agree, that's why I kept pointing out that T is different for everyone...nobody's T is exactly alike. If I wrote that slamming doors doesn't excite my T...it just means that it only applies to myself, and no one else. OVerall I take every comment with a grain of salt, never assume anyone on the net knows what theyre talking about

 

[Layla23]

****correction**** I try my best to not fear my H/ other symptoms

There are days where they completely break me down. Where I feel completely lost and desperate.

Wanted to make that clear. I definitely don't blame you a single bit for feeling intense fear. I'm right there with you. I'm just saying there are neuro-biological reasons behind fear making H worse (that we should try to avoid). Not fearing H can't cure us but it definitely helps.

@Red

 

[PDodge]

****correction**** I try my best to not fear my H/ other symptoms

There are days where they completely break me down. Where I feel completely lost and desperate.

Wanted to make that clear. I definitely don't blame you a single bit for feeling intense fear. I'm right there with you. I'm just saying there are neuro-biological reasons behind fear making H worse (that we should try to avoid). Not fearing H can't cure us but it definitely helps.

@Red

I don't mean to go off topic, but where did you decide for stem cell treatment? You could message me if you'd like

 

[Gman]

We know our tinnitus and/or hyperacusis could be worse! We know there is a difference between tinnitus and TINNITUS. I hear "You are lucky it isn't worse" all the time here, most often from long term members. This phrase is starting to become grating.

For me, this is very demoralizing to constantly read on the forums. I have been trying to cope with chronic conditions for 3 years now. I know that instead of getting better, I've gotten worse. I am extremely familiar. All the same, I've set aside my passions, my dreams, my career opportunities to prevent myself from worsening. I live in constant terror that things beyond my control will make me worse when I have so little left to give up (because I suffer from chronic pain as well). I try to get through every day with not making myself worse to the point where I feel like I'm a shred away from a mental breakdown. If I only had tinnitus it would be okay.

I could be a happy, functional person...but because I also have hyperacusis and chronic pain, the combination of multiple problems, regardless of their severity, makes it difficult for me to get through the day. Sadly, compared to the beasts of chronic pain and hyperacusis, tinnitus is my least bothersome condition. If it were to get worse I think I would seriously consider ending everything. When you say "You're lucky your tinnitus isn't worse" this is what I hear:

1. You can't get better, only worse. There is no reason to hope.
2. You will never have any semblance of a normal life.
3. You will get worse.

Everytime, everytime I read that statement I sincerely feel like I'm doomed. It's meant as a cautionary statement but it also comes off as very discouraging and self-destructive.

I hate when people say that if your T changes a lot in terms of intensity and frequency/frequencies then it's a positive sign and there's a good chance it could go away, compared to if it was more constant. Well, what it actually means to me is it is unhinged and unpredictable. It is incredibly hard to habituate to, never knowing what it is going to do when I wake up in the morning.

 

[PDodge]

I hate when people say that if your T changes a lot in terms of intensity and frequency/frequencies then it's a positive sign and there's a good chance it could go away, compared to if it was more constant. Well, what it actually means to me is it is unhinged and unpredictable. It is incredibly hard to habituate to, never knowing what it is going to do when I wake up in the morning.

Unfortunately this is true. I still hope one day it will settle.

 

[PDodge]

I hate when people say that if your T changes a lot in terms of intensity and frequency/frequencies then it's a positive sign and there's a good chance it could go away, compared to if it was more constant. Well, what it actually means to me is it is unhinged and unpredictable. It is incredibly hard to habituate to, never knowing what it is going to do when I wake up in the morning.

Don't laugh...Mr.Freeman...

 

[PDodge]

Aside from disagreeing with you, the smiley was because you wrote "unfortunately". Surely it would be a good thing?

Anyway, what are you basing it on?

My response to you was based on a game character called the "Gman" who has inter-dimensional powers and saves "Doctor Freeman" from catastrophe. It was only in jest. I hope for the best and your status applies to me as well

 

[Emperor-Drax]

My response to you was based on a game character called the "Gman" who has inter-dimensional powers and saves "Doctor Freeman" from catastrophe. It was only in jest. I hope for the best and your status applies to me as well

Gordon... you're alive! Thank god for that Hazard suit!

 

[PDodge]

Gordon... you're alive! Thank god for that Hazard suit!

DR. MOSSMAN!?!?!

 

[Emperor-Drax]

DR. MOSSMAN!?!?!

Hey did you ever play Half-Life 2? I remember it had a nice touch where if Gordon is anywhere near an explosion, his ears ring for a few seconds. Great realism!

 

[PDodge]

Hey did you ever play Half-Life 2? I remember it had a nice touch where if Gordon is anywhere near an explosion, his ears ring for a few seconds. Great realism!

I've played that games annually since it's release. It always makes me feel good!

 

[Bill Bauer]

I hate when people say that if your T changes a lot in terms of intensity and frequency/frequencies then it's a positive sign and there's a good chance it could go away, compared to if it was more constant. Well, what it actually means to me is it is unhinged and unpredictable.

I've never heard of anyone whose T was relentlessly at the same level, who got better. I had heard of people whose T was all over the place, who eventually got better...

 

[Gman]

I've never heard of anyone whose T was relentlessly at the same level, who got better. I had heard of people whose T was all over the place, who eventually got better...

Interesting, but it could get a hell of a lot worse and often does. It's like being on a roller coaster. In over 2.5 years it hasn't improved but has become unhinged and unpredictable with many additional issues such as H and TTTS.

Doesn't help when surrounded by brain dead morons who are so unaware of the impacts of sound. I can't wait to leave and be somewhere peaceful. Its happening soon.

 

[Jack Straw]

I strongly feel like the advice on these forums ruined my life.

I was always a passive person so when I read veterans posting things like "it gets better and don't over protect" I listened because I didn't have the guts to listen to my own intuition. That's what a passive person does....they don't have enough confidence in themselves to trust themselves. They seek external advice/opinions for everything. My tinnitus was no exception. I trusted the opinions of others more than my own.

My mild T turned into reactive tinnitus from hell, H, visual snow, and palipnosia. All from acoustic traumas. I don't have Lyme, I don't have MS, and I don't have cancer.

I'm only 23.

I agree it's crucical to not over protect your ears but I feel like that information was irresponsibly misconstrued on these sites. If your ears are damaged you should not follow the normal noise guidelines people with healthy ears follow. Genetically speaking as well, your ears are probably also not as strong as others and should have followed a lower decibel guideline to begin with.


I don't advocate living like a hermit either. Or living in fear. But it's irresponsible the way some of you claim "X noise levels can't hurt you". Everyone is different.


BALANCE is key. LISTEN to your body.


P.S. I will add that you can always improve too. But not becoming complacent to noise is key (in my opinion).

I'm sorry that your T and H have gotten worse due to noise exposure. How loud were the things you were exposing yourself to?

When people say "dont over protect" they are referring the low to moderate noise levels like things below 75-80 Db max. Once you go above that it is necessary to protect your ears if your in that environment for extended periods of time.

 

[Red]

I can't wait to leave and be somewhere peaceful. Its happening soon.

Hey, don't say that! Surely there's more things that could be tried?