Those Who Have Had Tinnitus for at Least 1 Year: Does It Get Better at What % Rate?

[uncle vikin]

I would like to see the % rate of people's improvement after (1) year with tinnitus, based on their feelings. Improvement only. Not % change for worse.

 

[I who love music]

My T has become probably 50% worse since 1974. But my ability to deal with it has improved by 50%. Hmmm. Yes, it's kind of like being back where I started.
Good question.

 

[Sound Wave]

My one year T anniversary is today. It has gone up and down during the year.

 

[meeruf]

Mine is much better. I can't really say in a number, but its better. Tinnitus volume is lower and even tho I can hear it almost all the time, I don't care so much anymore. I don't hate the sound anymore, I have no feelings towards my tinnitus anymore, most of the time.

 

[Kopesy]

Yeah my T has got much better than it was but my hearing has gotten worse. I don't know how to feel about that

 

[eldudebro]

I'm not near a year yet, coming up on 5 months.
Not sure if my T has got any better or not, however my reaction to it has.

It's either quieter or my brain is just zoning it out. Have mostly managed to rid myself of the anxiety associated with it, so I am hopeful that on the year mark i'll be even further on in recovery. Unless of course the tinnitus worsens, which is the big fear....

 

[Kathi]

My tinnitus is the same--it still cycles with loud days and quieter days and is totally unpredictable. What has changed is my reaction to it. I'm also having times when I forget about it. I've just gone through preparing a Christmas Dinner for my daughter, her husband, and her in-laws-- and all the work that goes beforehand--cleaning, decorating the tree, shopping, wrapping, etc. We had a wonder Christmas. Last year I would not have even tried...I think it was @Neenie who said she is Nina with some tinnitus now, not Tinnitus with a bit of Nina--or something along those lines. I feel the same. I'm a person with Tinnitus but I have a life.

 

[Teri]

I would like to share some good information from one of @Mark McDill 's post:

mild: T not noticeable in ambient noise (30-35 db)
moderate: T noticeable but easily masked by low white noise (fan running, etc)
severe: T noticeable even with medium white noise (but can still be masked)
extreme: T noticeable even with loud white noise (difficult to mask)
profound: T noticeable all the time (cannot be masked)

My T started April 2014 (8 months of T) and has gone from extreme to mild. The volume is MUCH lower. On the onset of T, I never had the extreme 24/7 but it would come on in spurts throughout the course of the day and night....anywhere from as low as 30 minutes to 7 hours at a time. It started in my left ear...but when it was really loud, it moved from my left ear to my head and over to my right ear. I also had a multitude of sounds on the onset (e.g. crickets, rushing, sizzling, ....the worse was the higher tones such as ringing and tone sound). Now I just have the frying/sizzle and crickets at a low volume...more noticeable at night. I do not mask now and really am only bothered more at night. I sleep fairly well.

 

[James7]

My tinnitus has gotten very slowly but consistently worse since onset. At first I could only hear it in silence, now I can hear it over traffic noises.

I have tinnitus as part of a rare neurological disease called "visual snow syndrome." In addition to tinnitus, I also have visual snow, which is basically the optical version of tinnitus, palinopsia, and halos around lights. Here is a simulated video to give you some idea of how people with visual snow syndrome experience the world, the simulation part starts at around 42 seconds in:

 

[Amelia]

I would like to share some good information from one of @Mark McDill 's post:

mild: T not noticeable in ambient noise (30-35 db)
moderate: T noticeable but easily masked by low white noise (fan running, etc)
severe: T noticeable even with medium white noise (but can still be masked)
extreme: T noticeable even with loud white noise (difficult to mask)
profound: T noticeable all the time (cannot be masked)

Seriously? Is this medically documented? Am I really severe?!?!?

 

[Teri]

@Mark McDill

I am tagging Mark on this to be sure, but I believe he indicated his Audiologist gave this information to him.

T is T. No matter how loud or soft...it is more about how one reacts to it. My father has had VERY loud T resulting from his military service for over 55 years and he doesn't even notice it. He doesn't even remember how long it took him to habituate to it as it was so many years ago.

 

[Mark McDill]

@Amelia @Teri
I can't really attest to the medical validity (or origins) of that scale -- other than it seems to work and it makes sense; it's just what my audiologist past on to me and it has been a good guideline. It's how he explained things to me at the beginning; I was in the extreme/profound region where there were many weeks my T could barely (mostly not at all) be masked.

Mark

 

[Neenie]

If your tinnitus does "improve" in 12 months time then you are in the minority. Define "improvement". Most of you here on this forum equate "improvement" with decrease in volume. Don't worry, so did I. Not anymore though. What changes after 12 months is your REACTION to it. And if it hasn't changed then you need to fill your spare time with hobbies, work, sport, friends, entertainment, and absolutely anything you can think of that is not tinnitus. Logically the less time you spend thinking about the tinnitus the less of a role it will play in your everyday life. If you're spending your time obsessing, worrying, analysing and monitoring your tinnitus then you are doing it wrong. Sure, if you want a life of misery, keep complaining to others about your horrible tinnitus. I promise you they wont care after the few hundred times you mention it anyway, so why bother. If the tinnitus bothers you at night (then you are lucky thats the only time it bothers you) then sleep with a rain app sound. Buy a portable speaker and stream it. If tinnitus is always there. Mask it. Why not? Why torture yourself? Some of you know that I have anorexia. I torture myself daily with starvation. Why? I have enough food in the house. Why do I do it? Habit. You worrying about your tinnitus has become habit. BREAK IT. Anyway, thats enough rambling for today. I sound harsh with my words. Yes. But sometimes you dont need someone who will "just listen". You need someone that will tell you what to do. So you can do it without a second thought and not doubt yourself while you're doing it. Good luck and best wishes for the new year

 

[Neenie]

Seriously? Is this medically documented? Am I really severe?!?!?

No Amelia. Tinnitus is tinnitus. It is only classified in reference to the reaction you have towards it. Problematic or non-problematic. Tinnitus loudness is SUBJECTIVE. What you define as loud, someone else defines as quiet. What you define problematic, someone else defines as benign.

 

[Martin Jensen]

I believe mine is extreme to profound. Before my latest increase it was moderate to severe but never cared about it as I did not hear it. when I first developed T I thought everyone could hear theirs over traffic and other noises. But in terms of loudness, I must be in the minority regardless, I hear it all the time, but do not fret so much about it as I did a few weeks ago. I have come to accept that it will be there in my consciousness all the time, but that I have times where it will bother me less. @Neenie, haven't you come a long way? i believe I have seen you elsewhere completely destroyed by your t. Dont take this the wrong way, but loud, severe T is more difficult to cope with, that hearing it if you plug your fingers in your ears. Yes, everybody reacts differently, certainly, but perhaps your "harsh" learn to live with it advice is a little ENT'ish.... Could you live cheerfully with loud incessant T as easily as when you have T barely audible?

 

[Martin69]

If your tinnitus does "improve" in 12 months time then you are in the minority. Define "improvement". Most of you here on this forum equate "improvement" with decrease in volume. Don't worry, so did I. Not anymore though. What changes after 12 months is your REACTION to it. And if it hasn't changed then you need to fill your spare time with hobbies, work, sport, friends, entertainment, and absolutely anything you can think of that is not tinnitus. Logically the less time you spend thinking about the tinnitus the less of a role it will play in your everyday life. If you're spending your time obsessing, worrying, analysing and monitoring your tinnitus then you are doing it wrong. Sure, if you want a life of misery, keep complaining to others about your horrible tinnitus. I promise you they wont care after the few hundred times you mention it anyway, so why bother. If the tinnitus bothers you at night (then you are lucky thats the only time it bothers you) then sleep with a rain app sound. Buy a portable speaker and stream it. If tinnitus is always there. Mask it. Why not? Why torture yourself? Some of you know that I have anorexia. I torture myself daily with starvation. Why? I have enough food in the house. Why do I do it? Habit. You worrying about your tinnitus has become habit. BREAK IT. Anyway, thats enough rambling for today. I sound harsh with my words. Yes. But sometimes you dont need someone who will "just listen". You need someone that will tell you what to do. So you can do it without a second thought and not doubt yourself while you're doing it. Good luck and best wishes for the new year

Hi Neenie,
Good that you are in much better shape than one year ago.
I read many of your posts and saw your desperation. So I am really glad that you made it.
I am not there yet. And you could be totally right with your harsh words.
Whenever someone made it and habituated to T, it was about reaction.
So most here are working on their reaction.
Nevertheless, when you speak about masking, I cannot mask my T (even the shower does sometimes not mask).
So I think, things take a little bit more time for unmaskable, profound T.
Also for you all the best for 2015.

 

[Mark McDill]

@Martin69 habituation is a very individual journey (it doesn't get more personal) and there are multiple environmental factors that play a role. Your pace is your pace; and it's never fast enough (ugh!). I've habituated (largely) but I still find myself paying attention to it at times and noticing subtle changes in pitch, volume, and frequency of loud days -- ugh! But my reaction is far different than it used to be; it's only about 10% of the what the visceral used to be and it's more like a 'nah-nah, you don't bother me anymore'. But it wasn't always like that; it's easy for me to recall those dark days.

Ultimately, it's true that it's about our reaction (subjective) but it should be incredibly obvious we are having that subjective reaction to an objective phenomena (take away that phenomena and we have zero subjective reaction -- nothing to react to). The tricky part, I've found, is that objective phenomena is integrated with our subjective reaction; anxiety goes up, neuronal activity goes up, and since T is likely the result of hyperactive neuronal activity then it follows suit and it goes up. But as much as I'm convinced it is about our subjective reaction, I'm equally convinced there is an objective phenomena that can be defined in great detail (regarding its bio-mechanisms). I don't agree with the 'definition' of T (phantom noise). They call it a 'phantom' sound because only one person hears it and it has no objective referent outside the body; last I 'heard' a sound is a sound if a person hears it regardless of its origins (it does not require multiple people). I hear a real sound.

Until then, and until we find a cure, we learn not to react it -- it's the best we can do, for now.

Mark

 

[Martin69]

@Mark McDill
Hi Mark,
Thanks for your explanation.
The thing is that even if T is maskable and not audible, it is not necessarily an immediate relief. So for example I was out for lunch and for a nice walk with my family in the snow the last three hours. My T was probably the same as always. To not hear and get worried about it, I mixed a little bit of cricket sounds into it. So when I say it is not maskable, this is not 100% correct. Because cricket sounds oftentimes mask it.
But even if T is not heard, it is on my/your mind most of the time. I can distract by throwing snow balls with my kids or whatever. But this T is always on my mind. I think for example:
- How good could live be without this sound?
- How do you live with it on the long run?
- How to work or function?
- How to get old with this?
And of course I know those thought do not help. Those are the ones which addressed in CBT.
I try challenging thise thoughts, but it is so difficult.
Also what Neenie says is difficult: Find new hobbies, visit friends, mask all the time and distract with whatever etc.
This sounds like stress for me, like running away.
I would prefer sitting in the quiet and having made peace with the sound. Showing no more reaction to it, whatever it does. This is for me the ultimate goal, but still a long way to go for me.

 

[Jesse Pinkman]

@Martin69
I bet you already know this, but these are the thoughts that keeps you from habituation. The more you wish for it to go away and the more negative thoughts you have against it, the further you are from habituation. I think habituation is pretty much impossible if you havent reached acceptance. Thats when the journey towards habituation begins. I know its hard, but positive thoughts and acceptance is the way. This is one of those conditions that stops fighting when you do. Let go, and tinnitus will too.

 

[Martin69]

@Jesse Pinkman
Hi Jesse.
Yes, that is correct. I know.
But I haven't found a way yet accepting a dog whistle sound in my head.
Tinnitus clinicians here also told me that I "only" need to accept this. They have no clue.
Luckily Dr. Nagler said that accepting his "jet engine" was and is also not possible.
Positive thoughts are also correct. Without them, I wouldn't have survived 15 months with this sound.
At the end, I really don't know what will help. I hope, someone can get used to this and habituate.

 

[Relic Hunter]

Mild tinnitus started 15 years ago or there about. Severe tinnitus about 5 years ago and it has gotten worse within that time. NO improvement.

 

[Ken219]

I can only give my experience. I've had 'T' for a long time. I also had the onset and three relapses. When my T is really bad I take medication(s). It helps me survive the hard times. I have been fortunate I have always habituated. Usually in 12 to 18 months. I'm in my 8th month of my third relapse. I can tell it is getting better. Better meaning not as bothersome. I'm 66 and still work in the field I love, technology. Time is our allied. I'm not what you would consider a strong person and I am still here. You can do it too.

 

[Mal]

I contracted tinnitus almost 2 years ago. I have the following observations:
- 10% better after 2 months: I began to be able to sleep again, and some of my "bonus tracks" in my brain faded.
- 10% better after 2 years: I am not panicking so much about my T.

So in total a 20% improvement. But I'm sure that it's 20% improved reaction and not 20% improved physical recovery unfortunately.

 

[Telis]

Tinnitus is tinnitus

No that's not how it works. If your tinnitus tripled in volume today I wonder if you would be singing the same tune. I think not.

 

[Lisa88]

@Neenie
Great advice.
I am curious, with your studies in audiology, why 12 months is so significant?
Seems that improvement can also be obtained, and has been obtained, after that marker.
To my knowledge, there is no evidence that this 12 months marks a cut off point in that, and represents just a guess in the ENT/Audiology community.
Anyway, your thoughts on that would be greatly appreciated.
Cheers.

 

[Neenie]

@Neenie
Great advice.
I am curious, with your studies in audiology, why 12 months is so significant?
Seems that improvement can also be obtained, and has been obtained, after that marker.
To my knowledge, there is no evidence that this 12 months marks a cut off point in that, and represents just a guess in the ENT/Audiology community.
Anyway, your thoughts on that would be greatly appreciated.
Cheers.

There is no "golden standard" as to when you learn to cope with your tinnitus better. I write "cope" because the tinnitus is there. It will remain the same. And if there are times in your life that you do not "hear" it, its only because during those times you are not focusing on it. I reiterate: Tinnitus is tinnitus....REGARDLESS of volume. Volume is subjective, much like pain is subjective, yet if one person experiences extreme pain in comparison to another persons equal pain, who are we to say they have the same pain? Example: We went to the beach the other day and I got stung by stingers. My partner also got stung equally as bad by the same stingers. I experienced extreme pain. He experienced slight pain. They were the SAME stingers. I realised what needed to change was my reaction to my pain. I deliberately didnt think about the pain by doing many other things, like beach volleyball and going for a walk and talking about TV shows. At that point my pain sensation reduced. Did the pain ACTUALLY reduce? No. But I wasnt focused on it anymore. This analogy is valid for tinnitus also. Someone earlier on mentioned that if my tinnitus was 3 times louder it would annoy me more. Yes it would, for no more than a week I would predict, until I realised I have to fill my time with other things that arent to do with monitoring my tinnitus. ENTs yes are harsh. But they are surgeons remember. If there is nothing they can do in terms of an operation, then they can not help you. If you are so very bothered by your tinnitus see a psychologist to work on some coping strategies

 

[Lisa88]

There is no "golden standard" as to when you learn to cope with your tinnitus better. I write "cope" because the tinnitus is there. It will remain the same. And if there are times in your life that you do not "hear" it, its only because during those times you are not focusing on it. I reiterate: Tinnitus is tinnitus....REGARDLESS of volume. Volume is subjective, much like pain is subjective, yet if one person experiences extreme pain in comparison to another persons equal pain, who are we to say they have the same pain? Example: We went to the beach the other day and I got stung by stingers. My partner also got stung equally as bad by the same stingers. I experienced extreme pain. He experienced slight pain. They were the SAME stingers. I realised what needed to change was my reaction to my pain. I deliberately didnt think about the pain by doing many other things, like beach volleyball and going for a walk and talking about TV shows. At that point my pain sensation reduced. Did the pain ACTUALLY reduce? No. But I wasnt focused on it anymore. This analogy is valid for tinnitus also. Someone earlier on mentioned that if my tinnitus was 3 times louder it would annoy me more. Yes it would, for no more than a week I would predict, until I realised I have to fill my time with other things that arent to do with monitoring my tinnitus. ENTs yes are harsh. But they are surgeons remember. If there is nothing they can do in terms of an operation, then they can not help you. If you are so very bothered by your tinnitus see a psychologist to work on some coping strategies

Thanks for the reply, Neenie. Yes, I don't think they have worked out time factors around tinnitus yet. The one year marker therefore has always baffled me.
I do agree re reaction. Am learning that as time eases my reaction somewhat.
But I don't necessarily agree that tinnitus will always be there. And the volume will stay the same, but just the perception/reaction changes. I think we are all different. No proof of any of this so far one way or the other.
I do know of chronic t sufferers whose t has disappeared - not habituated but disappeared.
Three such t sufferers who each had t for 15-20 years for example, went on a Candida diet, and their t was completely eliminated. Yes, that may just be pointing towards t and Candida, but it does point to a few things - gut and brain chemistry can have a strong connection, and it is possible for t to go, or eventually fade. Whether this is perception or actual plastic changes in brain and brain chemistry, well this is yet to be seen.

 

[Telis]

There is no "golden standard" as to when you learn to cope with your tinnitus better. I write "cope" because the tinnitus is there. It will remain the same. And if there are times in your life that you do not "hear" it, its only because during those times you are not focusing on it. I reiterate: Tinnitus is tinnitus....REGARDLESS of volume. Volume is subjective, much like pain is subjective, yet if one person experiences extreme pain in comparison to another persons equal pain, who are we to say they have the same pain? Example: We went to the beach the other day and I got stung by stingers. My partner also got stung equally as bad by the same stingers. I experienced extreme pain. He experienced slight pain. They were the SAME stingers. I realised what needed to change was my reaction to my pain. I deliberately didnt think about the pain by doing many other things, like beach volleyball and going for a walk and talking about TV shows. At that point my pain sensation reduced. Did the pain ACTUALLY reduce? No. But I wasnt focused on it anymore. This analogy is valid for tinnitus also. Someone earlier on mentioned that if my tinnitus was 3 times louder it would annoy me more. Yes it would, for no more than a week I would predict, until I realised I have to fill my time with other things that arent to do with monitoring my tinnitus. ENTs yes are harsh. But they are surgeons remember. If there is nothing they can do in terms of an operation, then they can not help you. If you are so very bothered by your tinnitus see a psychologist to work on some coping strategies

So all tinnitus is the same? It all just reaction and perception?

 

[Jesse Pinkman]

So all tinnitus is the same? It all just reaction and perception?

Obviously not. If I play a trumpet loudly directly into your ear, and your tinnitus doubles in volume or if you drink 10 redbulls and the same happens, there is obviously a correlation between the increased volume and those 2 events. There has obviously been some physical changes in your ear or brain and its hardly the reaction that has changed. Also fully habituated people with no reaction to their tinnitus gets spikes and has to start all over. Is it their reaction to it that randomly changed?

 

[Lisa88]

Obviously not. If I play a trumpet loudly directly into your ear, and your tinnitus doubles in volume or if you drink 10 redbulls and the same happens, there is obviously a correlation between the increased volume and those 2 events. There has obviously been some physical changes in your ear or brain and its hardly the reaction that has changed. Also fully habituated people with no reaction to their tinnitus gets spikes and has to start all over. Is it their reaction to it that randomly changed?

Yes. I absolutely believe that there are actual physiological factor/brain chemistry changes at play with t spikes. And if those exist for t worsening, then they also exist for t fading.
There are many many chronic t sufferers who have experienced such a fade.
Also just wanted to mention that although t is subjective, t there are parameters in t volume. For example, t appearing as loud as Niagra Falls is going to be louder than another's t etc.