Tinnitus Absolutely Does Get Better — Most People Just Don't Come Back to Tell About It!

[Tom Cnyc]

I'll watch the video and look at your LLLT posts. I recall now seeing your posts from before. I've been overlooking LLLT as an option because I don't think it supplied to me, but your mentioning muscle inflammation has piqued my interest. With one of my ears, I get this squirmy muscle tightness feeling spontaneously in my ear. Feels like a muscle spasm, I think it occurs when I'm subconsciously clenching my jaw muscles.

It's something I'd say was crazy to try if I didn't have tinnitus. Just sharing what I did. Can't say that it works.

 

[Tom Cnyc]

Which model did you use? I'll try anything at this point.

The Combo Mini. It had like 4 colors, some IR.

 

[Stuart-T]

I think it is probably true that most people whose tinnitus gets better do not come back to tell about it.

YES.

But I also believe most people who get worse or don't get better also don't come back to tell about it.

The conclusion:

• Tinnitus can get better
• Tinnitus can get worse
• Tinnitus can stay the same

There may be some statistics to break down the above in % terms etc. I would be interested if anyone knows of such a study.

 

[Markku]

I think it is probably true that most people whose tinnitus gets better do not come back to tell about it.

YES.

But I also believe most people who get worse or don't get better also don't come back to tell about it.

The conclusion:

• Tinnitus can get better
• Tinnitus can get worse
• Tinnitus can stay the same

There may be some statistics to break down the above in % terms etc. I would be interested if anyone knows of such a study.

A couple of years ago we ran a survey targeting people (i.e. we emailed them) who had not visited Tinnitus Talk in two months or more. We received 2814 responses. There were many more questions than this, but the below is the part that might interest you. Of course, even this does not capture it perfectly. Should we have made the duration longer, 6 months, 12 months? And maybe a chunk of those who did feel better, and got better, didn't bother responding, skewing the results further. It's not really a topic many want to spend time on after it no longer rules your life.

 

[UKBloke]

A couple of years ago we ran a survey targeting people (i.e. we emailed them) who had not visited Tinnitus Talk in two months or more. We received 2814 responses. There were many more questions than this, but the below is the part that might interest you. Of course, even this does not capture it perfectly. Should we have made the duration longer, 6 months, 12 months? And maybe a chunk of those who did feel better, and got better, didn't bother responding, skewing the results further. It's not really a topic many want to spend time on after it no longer rules your life.

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I think two months was probably too soon. Two years I think is a good timeline with this. 2814 responses is excellent though.

 

[Stuart-T]

A couple of years ago we ran a survey targeting people (i.e. we emailed them) who had not visited Tinnitus Talk in two months or more. We received 2814 responses. There were many more questions than this, but the below is the part that might interest you. Of course, even this does not capture it perfectly. Should we have made the duration longer, 6 months, 12 months? And maybe a chunk of those who did feel better, and got better, didn't bother responding, skewing the results further. It's not really a topic many want to spend time on after it no longer rules your life.

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As I thought - about 50% no difference.

And about the same who had improvement and who had worsening, but some good evidence of habituation.

I don't see any reason to presume that those who improved were any more less likely to respond than those who got worse. Those who got worse may have been too depressed to respond. If anything, the former - in their positive joy - would want to reply.

Thanks for posting that.

 

[bobvann]

Well, I have a small child these days - so I don't really go to raves at this point. But I absolutely have gone to them, and I frequent concerts - like 15-20 a year. Hell I've done a few 3-day festivals. I wear custom molded earplugs. Usually 25 dB of reduction ones. When I'm in loud small rooms playing guitar in a band setting I use 15 dB of reduction ones because I need maximum clarity to decipher harmony. if I am playing drums I wear over the ears cans.

Honestly, if you don't have hyperacusis - going to a loud show with earplugs in WILL NOT impact your tinnitus. Basically every musician / person working in that field has at least some tinnitus. Most that are smart enough to wear earplugs are doing it because they already had some damage and started to protect their hearing. It absolutely stops the damage from getting worse for literally the dozen or so of people I know that are in this situation.

I remember communicating with you when I tried playing guitar to distract from my drum playing induced tinnitus. I think you said you were doing the opposite.

I tried playing electrical drums again, unfortunately it now messed up my right ear, resulting in ear fullness and crackling which was not there before. This was using custom earplugs and volume controlled speakers. This proves to me that perhaps for some of us it's not just a psychological issue.

I am going to my GP to have my ear checked out since they are physical reactions.

 

[ploughna]

I note that you have had noise-induced tinnitus for 5 years @ploughna. Since I don't have a full history of your tinnitus, my advice is based on my experience with noise-induced tinnitus and people I have corresponded with that have it. If you previously habituated to tinnitus and it has got worse over the years, in most cases (but not all) the reason is further exposure to loud noise or listening to audio through headphones. More about this is explained in my thread: Can I Habituate to Variable Tinnitus?

I believe you are overusing hearing protection which has resulted in lowering the loudness threshold of your auditory system and making it more sensitive to sound. It can cause the auditory system to react in peculiar ways that you have mentioned. I suspect the underlying cause of your oversensitivity to sound is hyperacusis. This can be treated with self-help or being under the care of an audiologist that specialises in tinnitus and hyperacusis management. Please click on the link below and read my post: Hyperacusis, As I See It.

Spikes usually (but not always) affect people that have noise-induced tinnitus. They are an indication that the auditory system is oversensitive and needs to be desensitized, either with self-help or under the care of an audiologist. The treatment can involve counselling and wearing white noise generators. Some people that have recurring spikes, there is a risk of the tinnitus increasing, so please try and get some treatment.

All the best,
Michael

Michael - apologies for not responding sooner. Thanks for your detailed rely - this is helpful.

Paul

 

[Michael Leigh]

Michael - apologies for not responding sooner. Thanks for your detailed rely - this is helpful.

Paul

No problem Paul, take care.

 

[TWK]

Thought I'd check in on Tinnitus Talk today because I've had absolutely no tinnitus today (so far). I first got severe tinnitus almost 5 years ago from a viral infection. It was so bad that it was blasting above the shower. It could not be masked. Also had pretty severe hyperacusis to go with it - silverware clanking in the kitchen was excruciatingly painful, as was certain people's voices. My limbic system was already pretty sensitive prior to tinnitus, but when the tinnitus started, it went into crazy mode - I developed severe sleep maintenance insomnia, I'd have tremors, especially when waking, and a lot of other signs of severe hyper-activation of stress responses. There were times where I had the, familiar to many of you, "I'm pulling the plug if this doesn't go away" thoughts. It was not a good time to put it mildly.

Somehow I got myself through to the other side. The tinnitus intensity went down a fair bit in the first year (maybe 50%), but then stayed the same - still very noticeable. It also took about 1.5-2 years for the hyperacusis to subside, although I still get a mild bout of it now and then. I eventually largely habituated to the point where I'd go a whole day without noticing the tinnitus - that took about 3.5-4 years. Some days were worse than others - I'd have unexplained spikes, but they'd always eventually subside. This last year has been pretty good - my sleep is finally almost fully back on track (I get 6.5-7 straight hours a night), I'm very productive at work, I'm not stressed with my family members because of the sound or lack of sleep, and physically I feel much better. Recently, I started having whole days without much tinnitus present at all - I actually notice those days more than the days with tinnitus! It does always come back, but the temporary 'holidays' from tinnitus are nice.

Things that helped me - I got back into healthy modes, including: better eating, exercise every day (a lot of cycling), a bit of meditation, cut out the drinking, minimal caffeine, regular hours for sleep, strategies to deal with stress, and importantly I, learned how to accept and ignore the tinnitus/and not dwell on it, and I stopped visiting the Tinnitus Talk forums (this helped a lot with learning to not think about tinnitus). I look after my hearing in reasonable ways now too, like no earphones, and likely no more concerts, not that I went to many. I also learned to not over protect my ears - that isn't healthy either.

My tinnitus may not ever fully go away, but I'm in so much of a better place now that it may not matter much. Not everyone will have the same trajectory with tinnitus, but hopefully many of you can get there.

 

[Tom Cnyc]

I remember communicating with you when I tried playing guitar to distract from my drum playing induced tinnitus. I think you said you were doing the opposite.

I tried playing electrical drums again, unfortunately it now messed up my right ear, resulting in ear fullness and crackling which was not there before. This was using custom earplugs and volume controlled speakers. This proves to me that perhaps for some of us it's not just a psychological issue.

I am going to my GP to have my ear checked out since they are physical reactions.

I definitely avoided it for a bit... I'm glad to have started playing again.

I never said it was psychological or that I am anything more than 1 person.

I know my outcome isn't always the case. My point is that people who get better, leave forums, so people shouldn't project their prognosis on who stays.

I feel for everyone stuck in it. It sucks. And it's real.

 

[MadeleineHope]

I'm not a doctor, but my hypothesis is that hyperacusis is the tensor tympani muscle stuck in activation mode - essentially trying to guard your hearing. Think of a clenched fist. Doesn't hurt - but if you held it for a month? A year? Even gently touching it would be agony. It's that, but your ear.

This is one way that I subscribe to sound therapy as a possible solution. As you desensitize, your anxieties drop - and your body naturally starts to lower its defense mechanisms that we can't consciously control. I had some serious trigeminal numbness and electric shocks as well that went with this - as I relaxed, it all started to fade.

For me, I think a lot of the improvement started when I reintroduced my guitar into my life and began to feel like myself again. I started with an unplugged electric as it's pretty low in volume. Then moved into an acoustic wearing earplugs. Eventually got to a point I can plug the thing in and play with no earplugs at a reasonable volume.

The improvements are hard to chronicle, but slowly but surely the numbness in my face and the pain / discomfort (I can't decipher how others would describe the difference as this is entirely subjective) waxed and waned. Oddly, when I do get a tinnitus spike now (ear infection, or something like that) I'll get some mild hyperacusis towards the end every time. Oddly it always fades after that.

I think the important thing to note is that it was not linear healing. For a visual, it'd be almost like a Bitcoin value chart - wild swings but if you really zoom out, it's improving over time.

My memory is a bit fuzzy on all the details. Candidly it's a few years ago, my brain has blocked some of the trauma, and I definitely developed a drinking problem for a while there as well to cope. For me, getting hammered made it much easier to tolerate. I don't recommend people take that angle for treatment, of course.

The other thing I did was start going for medical massages. Not like Massage Envy, like from a physical therapist. It was a bit expensive but it helped me fix some postural issues/neck issues that likely were complicating the scenario. Cheaper than a shrink too.

I developed tinnitus May of 2016. Meaningful recovery took 18 months, but I was still suffering at that point. I started to see a little improvement around 14 months in. To get to where I am now took 4-5 years or so.

Hey @Tom Cnyc,

Thanks so much for sharing your recovery story here! It's been a real source of hope for me, & I've returned to re-read your posts many times!

I'm about 7.5 months into my hyperacusis & tinnitus journey, & recently I've developed a new, frightening symptom - facial numbness. I haven't lost all feeling, but there is still some numbness there & my face feels really tight. Can you share more about your experience with this symptom? Did you ever experience it for a prolonged period of time, or was it an on-and-off again thing for you, closely tied to sound exposure? And how long did it take for this to resolve for you?

Thanks!
Maddy

P.S. How are you doing these days?

 

[Óscar PP]

Yeah, this is true for most. Mine didn't really get better, I just adapted to it with time (6-8 months).

 

[Juliane]

Yeah, this is true for most. Mine didn't really get better, I just adapted to it with time (6-8 months).

I am in the same boat. No improvement, no habituation. Only despair.

 

[momus]

My point is that people who get better, leave forums, so people shouldn't project their prognosis on who stays.

That may be true (or not), but there is no way to know because the people who have left the forum are not here to respond as to why they have left. Only they can answer it, and they ain't here.

My tinnitus is what it is. It has gone down and up over the course of 2+ decades, so I don't mention it because it fluctuates. Plus, we all know that talking about it only draws attention to it, which only makes the perception of it worse. I went to a couple of in-person support groups in Portland when I first got tinnitus... never again! That was not helpful at all.

 

[Tom Cnyc]

That may be true (or not), but there is no way to know because the people who have left the forum are not here to respond as to why they have left. Only they can answer it, and they ain't here.

My tinnitus is what it is. It has gone down and up over the course of 2+ decades, so I don't mention it because it fluctuates. Plus, we all know that talking about it only draws attention to it, which only makes the perception of it worse. I went to a couple of in-person support groups in Portland when I first got tinnitus... never again! That was not helpful at all.

I know many people who had dramatic improvements and I am one. Not everyone who leaves gets better, but most who get better leave.

 

[ZFire]

I know many people who had dramatic improvements and I am one. Not everyone who leaves gets better, but most who get better leave.

Hey @Tom Cnyc, I was wondering if you're still living in NYC? Do you find the city obnoxiously loud too? I'm a New Yorker too.

 

[Tom Cnyc]

Hey @Tom Cnyc, I was wondering if you're still living in NYC? Do you find the city obnoxiously loud too? I'm a New Yorker too.

I moved to Essex county. I still have to commute 2x a week to the city. Yes, I hate how loud the city is. I'm pretty open with friends and coworkers about what I went through years ago (they see me wear musician's earplugs in loud bars and on the train etc) and I've had many ask me where I got them because even without having tinnitus, they're bothered by the noise also.

Ever been on the 6 line at Union Square where the metal railing expands to fill the platform void? Years of commuting in that station with that screech - I'm convinced caused more damage than my concert habits. Everyone should wear earplugs there.

Before moving to NJ, I lived in Queens (Long Island City). It's not quite as loud as Manhattan, but it is dramatically easier on the ears in the suburbs, and it's a better and less expensive life out here if you're considering moving. Do it for more reasons than tinnitus.

 

[ZFire]

I moved to Essex county. I still have to commute 2x a week to the city. Yes, I hate how loud the city is. I'm pretty open with friends and coworkers about what I went through years ago (they see me wear musician's earplugs in loud bars and on the train etc) and I've had many ask me where I got them because even without having tinnitus, they're bothered by the noise also.

Ever been on the 6 line at Union Square where the metal railing expands to fill the platform void? Years of commuting in that station with that screech - I'm convinced caused more damage than my concert habits. Everyone should wear earplugs there.

Before moving to NJ, I lived in Queens (Long Island City). It's not quite as loud as Manhattan, but it is dramatically easier on the ears in the suburbs, and it's a better and less expensive life out here if you're considering moving. Do it for more reasons than tinnitus.

Thanks for sharing. I'm planning on moving to New Jersey sometime in the future as well, once I have money to do so. My goal is to find some co-op or condo apartment either in Fort Lee, Edgewater, Fairview, or Cliffside. I enjoy those areas a lot. I have lived in Manhattan, NY since birth. I want out now. Too much noise and the city is sinking with this mayor.

Stay safe out there.

 

[Tom Cnyc]

Thanks for sharing. I'm planning on moving to New Jersey sometime in the future as well, once I have money to do so. My goal is to find some co-op or condo apartment either in Fort Lee, Edgewater, Fairview, or Cliffside. I enjoy those areas a lot. I have lived in Manhattan, NY since birth. I want out now. Too much noise and the city is sinking with this mayor.

Stay safe out there.

You're staying pretty urban in those areas, but you'll def be happier. I planned to move to Weehawken before exploring further out... Honestly, take a look, you may be surprised how much more you get for your money just adding 15 minutes to a commute. Just watch out for plane lines because Teterboro creates some noise pollution.

 

[Mattv]

My tinnitus was far from mild. It's still there but I've learned ways to cope with it and my life is back to what it was before.

Don't worry about comments like this. This is why I rarely come to Tinnitus Talk. A lot of people want to diminish your perception or difficulties with tinnitus because theirs is far worse.

I too have had very loud, intrusive tinnitus since 2016. At first it was horrible, but over time, I just don't care about it. I still hear it as loud every day. For me (and I suspect many others) my tinnitus is very much related to anxiety and stress. If I go to my off grid cabin for a few days and mediate, it sometimes gets much better. Because I can have rare days of almost silence, I have hope it might subside.

Many of the people I know who suffer from clinical depression and anxiety (I do not) also have tinnitus. People with mental health issues seem to have the hardest time with getting used to tinnitus.

 

[Binnen-dahlia]

It's nice to hear good stories. It does scare me to hear that tinnitus can become louder over the years. I mean it's already so loud.

Does anyone have some tips on how to habituate?

 

[RunningMan]

For me (and I suspect many others) my tinnitus is very much related to anxiety and stress.

I've read that from various people. It's interesting because I have had extreme anxiety at times and very low other times, and my tinnitus intensity has no correlation to that. Same thing with lack of sleep or differences in diet - the tinnitus just does what it does.

If I go to my off grid cabin for a few days and mediate, it sometimes gets much better. Because I can have rare days of almost silence, I have hope it might subside.

Wow, I can't imagine having "almost silence" in quite a while, but especially these last 18 months. I can hear my tinnitus over pretty much everything all the time except the shower. I would love to experience something close to silence once in a while.

Many of the people I know who suffer from clinical depression and anxiety (I do not) also have tinnitus. People with mental health issues seem to have the hardest time with getting used to tinnitus.

I've seen quite a bit of feedback from people who never had the slightest depression until after getting bad tinnitus. It's turned their lives upside down. Mild tinnitus would probably not have been an issue for most of them since that can be more easily habituated to, which is pretty much impossible with loud variable multiple tone/sound tinnitus.

Anyway, as far as the thread and tinnitus absolutely getting better, in over 20 years, my tinnitus has only gotten considerably worse, and in that time, I can add additional hearing loss, ETD spontaneous clicking, TTTS/MEM, hyperacusis, and insomnia to the mix.

 

[Mattv]

Anyway, as far as the thread and tinnitus absolutely getting better, in over 20 years, my tinnitus has only gotten considerably worse, and in that time, I can add additional hearing loss, ETD spontaneous clicking, TTTS/MEM, hyperacusis, and insomnia to the mix.

I'm so sorry you are suffering. I totally understand. My tinnitus came on during a period of intense work anxiety. I have worked very hard to reduce my stress. Even if it's not helping my tinnitus, it helps me deal with it better..

 

[gameover]

I've seen quite a bit of feedback from people who never had the slightest depression until after getting bad tinnitus. It's turned their lives upside down. Mild tinnitus would probably not have been an issue for most of them since that can be more easily habituated to, which is pretty much impossible with loud variable multiple tone/sound tinnitus.

Can confirm. No depression ever. Maybe handful of times in life when I'd be down for a few days, but I am literally talking days. Life was too exciting to stay down and I always found something to look towards. And things always turned out good. This time I just cannot get up. I had a slight improvement for a couple of weeks recently, but am down again.

 

[SilverFox]

I've seen quite a bit of feedback from people who never had the slightest depression until after getting bad tinnitus. It's turned their lives upside down. Mild tinnitus would probably not have been an issue for most of them since that can be more easily habituated to, which is pretty much impossible with loud variable multiple tone/sound tinnitus.

I, too, am this case. Never had anything even remotely close to depression or anxiety. I could imagine getting used to constant quiet tinnitus. This stuff? It kills you from the inside.

 

[BobDigi]

Some people do get better and some people don't.

Everyone can cope with tinnitus better over time, but like everything in life, it depends on how strong your mindset is and how much you're willing to try.

 

[gameover]

Everyone can cope with tinnitus better over time, but like everything in life, it depends on how strong your mindset is and how much you're willing to try.

Correction: "...it depends on how strong your mindset and how bad your condition is."

There are levels of tinnitus and especially hyperacusis where no mind can match them.

 

[Utdmad89]

Correction: "...it depends on how strong your mindset and how bad your condition is."

There are levels of tinnitus and especially hyperacusis where no mind can match them.

There are lots of people with loud tinnitus that learn to cope. Maybe not with bad hyperacusis.

 

[gameover]

There are lots of people with loud tinnitus that learn to cope. Maybe not with bad hyperacusis.

I can agree. I am increasingly better at coping with my loud/severe tinnitus, but I am unable to overcome my hyperacusis, which perhaps is still moderate (mostly loudness only).