Tinnitus vs. Tinnitus + Hyperacusis: Some Basic Differences

[Zimichael]

This post is coming out of a reply I wrote in another thread, about what defines "severe tinnitus". You can find that here: https://www.tinnitustalk.com/threads/define-severe-tinnitus.5081/ It got me mulling the differences between straight up tinnitus, and tinnitus with hyperacusis hitch-hiking along with it. Tenna, who started that thread, kind of gave me the shove to finally address this more fully. In addition I perused more of the threads in the Hyperacusis & Ear Pain Forum here on TinnitusTalk . [For those who have hyperacusis, go there and look, lots of good discussion!]

Why then bring it up again? What more can be added to what has already been said?...The answer to the latter is: "Not much!" But I see no harm in repetition on this topic, as new people are joining this site every day and the "Hyperacusis" part of the equation is very easy to get confused about.

Hell, I had tinnitus for 50 years before I knew what hyperacusis was, even though I realize now I had experienced in 1980. It took a major T (tinnitus) and H (hyperacusis) combo in 2006 to introduce me to what it really meant…And, to add insult to ignorance, no-one ever told me about the potential for increasing H, (or at least slowing down habituation/healing) by 'over protection', until I joined this TT Forum six months ago.

Pretty stunning huh! If I can be that ignorant after decades of this affliction and lots and lots of research, questions, docs, audiologists, practitioners of all stripes, etc. it makes me wonder. Which = kudos big time to TT Forum and those who brought this site to life - Thank you!

OK, that's the intro. and as usual I doubt this is going to be a short post (not my style – sorry). What I want to add to the discussion is that I have some differences of opinion on the conventional approach regarding how to deal with T + H…Though I fully agree that there is so much individuality and difference in how people present and experience their tinnitus, or T + H, that indeed it is not something I am going to go to the wall about.

The main point that I want to emphasize, is that if you have tinnitus and hyperacusis, be careful not to get too caught up in expectations and approaches that may not be realistic for you. This, especially if you are new to T and may not even realize that you have hyperacusis along with it.

I say this because in retrospect, I initially thought that hyperacusis was automatically a part tinnitus. It is not. It might be, but it doesn't have to be. Also it may be very, very temporary and dissipate far more rapidly so that in a way it's hard to know you even had it. The plain ol' T however, tends to stick around and thus appears to be the only thing that 'happened'. Fortunately, I think this is more the norm – thank goodness!

In addition, I have had many conversations, phone-calls, discussions, etc. over the years with people about/with tinnitus which I am drawing on, as well as way too much personal experience with it's vagaries. By that I mean four permanent increases in T 'volume' over my lifetime which gives me a somewhat unique perspective perhaps. These increases were caused by sound exposure and ototoxicity from meds, so I have experience for both and the uniqueness of both.

To be clear…I am not writing this as some sort of addition to the "horrible scary stories" that frighten newbies to death and are no doubt somewhere on YouTube or the internet. I have never bothered to find any. (Ha, ha…I have my own horror story to live with! OK, OK, just half kidding I suppose). In fact the fact that I 'got my life back' three times so far just goes to prove that even with the most horrible levels of T and H it is possible…but takes time. [Obviously I could write a book about all that so if anyone is really keen on seeing more, just go to my profile, past posts, and you can see some of that 'history' there].

So T with H…To me, the hyperacusis is the biggest "bad boy on the block". It really wrecks the habituation process as it continually spikes the tinnitus, causes a legitimate fear and avoidance of sounds, and can very easily stimulate the over use of hearing protection. That last point is addressed throughout this site in various places and a typical thread is this one: https://www.tinnitustalk.com/threads/overuse-of-hearing-protection-what-do-professionals-say.4905/ It's also one I have some contrary opinions about.

In general with T therapy there is a lot of emphasis put on exposure to sound to combat adopting a fear of sound and shortening habituation times, etc. Warnings of over-protection prolonging or even causing hyperacusis are part of that package too. In general I think it is correct, but if you have hyperacusis already – watch out! I would far prefer a prolonging of hyperacusis than a whole new jump up in permanent volume of tinnitus!!! I think there is a real danger of this happening . Case in point…my damage in 2012 was precisely that. To add to the cruelty of it (can't think of another word), it was truly a "stealth" attack and really rocked me hard. It is perhaps the hardest to adjust to and I am still struggling with it. After coming so far over 6 years to just get trashed again…Well, I have a 'grudge list' for the hereafter and me and the Big Guy (or Gal) in the sky are going to have a helluva fight about this. Tinnitus has to GO! Suffering has to GO! I mean, let's get some DESIGN CHANGES on the cosmic ballot…Ummmm, sorry I digress.

This 'don't over-protect' thing I think is over-done.

Look, way back I bought the line that it took a lot to cause a permanent increase in T volume. This was borne out by the fact that I lived a darn normal life and got exposed to plenty of loud sounds (even a Rolling Stones concert inside for Pete's sake) without my T increasing for more than a short time or until a night's sleep calmed it back down to baseline. Why would I worry too much about it if it did that? I didn't. My T was just a thing I had that really didn't affect the quality of my life that much (the 'golden standard'). It bothered me if I tried to meditate…Hah! Big bleedin' deal. Seems quant now in my new 'sound reality'.

People with this 'normal/single' (what the blazes to call it???) kind of tinnitus I think have a hard time really grasping what it's like to have hyperacusis along with it. I sure didn't! And I should have, as by 1980 was at stage II volume level and had even had hyperacusis for a year or so. I just didn't realize it and thought it was part and parcel of the 'louder tinnitus' caused by excessive sound exposure. Seeing as in a couple of years I adapted to this new tinnitus level and if it ever got zinged it went back to the new baseline overnight, I sailed on in the seas of life pretty much as before. I did protect when driving heavy equipment, but that was more because OSHA had done a good job and it became natural to see people wearing ear-muff hearing protectors using leaf blowers, chainsaws, tractors, etc. I primarily figured it would preserve me from old age deafness. My tinnitus sure did not stop me from parties, exuberant conversational group dinners, crowded places, movies, etc., etc. "Full habituation" as the professionals like to call it.

Then came the real Hyperacusis – in 2006. All those old rules got chucked out the window. In fact the windows in my car had to stay closed, as couldn't handle road noise, even with full earplugs in! Yes, a very different universe. One where "over-protection" was an absolute necessity not an option. One where any type of masker, sound generator, notched hearing aid, white noise, pink noise, 'noise noise', was traumatic. The slightest noise over much than a whisper almost sent my new level III ringing/tinnitus through the roof. Needless to say, it was severely debilitating and traumatic.

And I know some of you on this board are in that condition (as you have written to me)! As you know, my hard earned advice is: DON'T FRET TOO MUCH ABOUT NOT GETTING ENOUGH SOUND EXPOSURE…JUST SURVIVE! If you can do that, you are doing well. Don't become another suicide statistic (yeah I'm talking to myself here too some days) as IT DOES GET BETTER!!! Take your time. Protect the hell out of your hearing if you have to but always aim at reducing that at your own pace.

If you are getting professional help, ditch them if they are not 'grokking' (getting it) regarding your reality. This very much includes TRT, or 'purported' TRT (a touchy subject, as even Dr. Nagler has come out and said that there is hardly anyone he considers qualified to do the stuff right – but indeed, TRT proponents are generally 'not that much in agreement' shall we say, with what I am writing here). Instead, initially try and find emotional support rather than "hearing support" if you are in the severe hyperacusis/tinnitus zone and trying to force yourself to "deal with it". Just let some TIME go by…and yes, unfortunately, that may mean a few years. Yeah, I know that's hard for younger people to go with I know, but we are talking the rest of your LIFE here. Do not end up like me having to repeat this whole game successive times, as it does not get easier with 'practice'.

This site offers incredible resources and information on all this. For T & H you don't really need any other. If a "true cure" happens, it will be posted here in nano-seconds. If you need specific info do a search – you will be swamped with high quality, up to date material. If you need support, there are numerous avenues and wonderful people willing to help. It's a resource I sure wish I had in 2006.

So, to end off (yeah, finally!), to those of you with Hyperacusis along with your Tinnitus…Glean, learn, reach out, try things. But be prepared to have setbacks. Be prepared to invest more time in recovery than you may desire or expect of yourself. Don't judge yourself against those with 'plain tinnitus only' who may have rapidity of progress you follow with envy. Take your time and err on the side of caution rather than haste. Be real with your hyperacusis as it will tend to govern what happens to your tinnitus and your perception of it – not the other way around!

Take care and I hope this long treatise helps even one person. If so it's worth it!

Best, Zimichael

 

[billie48]

Very informative and encouraging write up about tinnitus and hyperacusis. Thanks for sharing your experience, Zimichael. T is scarying, but H is simply very limiting besides scarying.

I developed severe hyperacusis soon after tinnitus. I had heard of ringing ears. Just not ready for the ringing to be ultra high pitched and loud and non-stop. But I never heard of hyperacusis and the severe limitation it put on the sufferers. Thus added the extra element of fear for what was going on and what to become. Every normal sound turned glassy and piercingly hurtful to the senses, as if the ears got drilled or somebody scratching glass with metal near the ears all day. It was quite unbearable sensation of course. Never experienced anything like it and never knew whether it would be a life time problem. So the anxiety and panic attacks were relentless, being that I had decades of anxiety and panic disorders before T & H. When I wore earplugs for H, T became unbearably dominant when all outside sounds were blocked. So I had to choose the lesser of two evils but there was no lesser choice. Really tough period of my life. Luckily, H just slowly faded away with the passage of time.

 

[Zimichael]

Billie... Yeah, the lack of 'realization' about hyperacusis riding along with tinnitus (especially at the beginning of T onset) is one I see being missed just about every day in new posts here. UNDERSTANDABLY!!! Like I said, it was only when I got to volume level III in 2006 that I realized what hyperacusis was or that it even existed., and I had had tinnitus for 50 years by then!
But like you, it sure added a lot to the anxiety and suffering as my ignorance of it did not help at all. No TT Forum back then to enlighten me!

Anyhow, for general reference, as this was not in this post, I'd like to clarify a point... My hyperacusis seemed to go down/calm down/ease off, about 10% per year. In retrospect it was pretty darn steady and stable in that rate. This was true irrespective of some inevitable 'spikes' and situations that amped up my tinnitus volume temporarily along the way.

My tinnitus volume however, at any of the "levels" (now at stage IV), has never gone down...Once a baseline is established, it stays there. For me! There is a very high likelihood that this will be different for others.

So this is good news and bad news in a way. Good news in that the hyperacusis seems to be sort of independent from the T and just does it's own easing off thing. Which is great, as for sure it is the tougher of the two to deal with in terms of trying to live a more normal life....That "quality of life" aspect.
The bad news (in my case) is that the T volume has remained at the new higher baselines each time...BUT, and this is a somewhat qualified "but"...The good news is that plain T can eventually become the equivalent of one's own "silence". Which in essence can mean it does not really bother you. It is just "there". Classical habituation. Yeah, even with insanely loud levels internally.
If I stop and actually listen to my tinnitus, I just am in awe of how darn loud it is. My comment to myself is always: "This is just INSANE, who could put up with this?!" (See "Eyes Like Saucers" post if you want an idea of loud baseline volume is). Yet somehow my brain sort of, kind of, maybe most of the time, after a while (years), adapts to it enough that I am not thinking about going into a gun store to end it all.

So back to the Hyperacusis + T, and super common posts that refer to habituation...Getting to where the T does not rule your life any more. Being able to go out and do stuff again. Realizing that the T level/volume comes down after a spike. Maybe changing jobs to a quieter profession but now all is good and don't notice the T hardly at all. And so on.

All these are great! It's the goal. The: "Don't react to the T instead work on your reaction to your T"...100% valid. Totally relevant. Totally true. But at the risk of sounding like a stuck record...For those with hyperacusis along with their tinnitus, in a way you are dealing with two conditions. Definitely intertwined. Definitely subject to similar 'laws' (for want of a better word). However, if you realize you have two conditions not just one, my strong belief (and experience) is that it will make the road ahead a lot easier to navigate, reduce the inevitable anxiety and setbacks that accompany that, and increase the ability to believe in regaining a "quality of life" that feels totally elusive at the onset of this darn condition.
Educate yourself about hyperacusis if your tinnitus seems to be overly "reactive". All the info you need is on this site. You can debate with yourself and your own experience as to whether you go with the "over protection" route (rest the ears) v. the "stimulate with sound" route. You sure as hell will find out soon enough which one you can tolerate in the early stages. Then take it from there.

Hope this helps. Best... Zimichael

 

[Ken219]

I've had T for 24 years. A few relapses. Why? I do not know. But how do people determine the volume of their T. I have had the last ten years habituated to 'T'. Now it is back, into one month. I can't say this time is worse than last time? Every time it erupts it appears the same, bad! I habituated 3 times and I will do it again.

 

[Mpt]

ken.. when you habituated, how often would you hear or notice your t, i guess what im asking is would you have to "look" for it in order to hear it, or was it something that you heard quite a bit, or all the time but just no longer cared about?

 

[Ken219]

@Mpt It was basically there. I had quiet time where I didn't pay attention to it. Then there were times I heard and said to myself hi T. When I used ear plugs it was there. It just did't bother me anymore. When I first heard my T 1990 I was in bad shape. I managed to habituate within a year. 1995 I had a relapse this time I was hospitalized and put on medication(s). 2002 I had another relapse. I was hospitalized and put on medication(s). This relapse started last month(5/2014). I kind of know what the drill is. This time I also have vertigo so I am on steroids too. Take it day to day. I know it will take time. Believe me I'm hurting now. Got to believe that I will habituate again.

 

[Mpt]

Hi Ken,

Could you fall to sleep with no masking noise since onset or before your recent worsening, also what level of ambient noise was necessary to competely mask it?

Thanks,
Matt

 

[Ken219]

Hi Matt, @Mpt
Before habituation I'd take 10mg ambien and .5mg xanax to sleep. After I fully habituated, no medications, no need for ambient sound. It was great. I see you have T since 1/2014. How are you doing?

 

[Zimichael]

Ken... In relation to your question about volume, these two threads may help shed some light on that:

https://www.tinnitustalk.com/threads/how-loud-is-your-tinnitus.2080/

https://www.tinnitustalk.com/threads/define-severe-tinnitus.5081/#post-50903

This thread I was hoping to mainly keep the focus on Hyperacusis + T, as that brings specific challenges.

Not that "recurrence" of T after habituation is not challenging! It definitely adds to the "Oh shit not this again!" quotient. But having the addition of hyperacusis, makes it even more of a 'psychological nuke'.

Hope your situation improves. Sounds to me like there is some other "stuff" going on ref auditory areas with the vertigo involved and all. Snoop around the site and I'm sure you will find some potentially helpful info. There is so much here and I see you just joined in early June. I've been aboard for 6 months and often feel like I've hardly scratched the surface!

Take care, Zimichael

 

[Tenna]

Thank you so much for this post Zimichael! It's great to see how the forum helped you in understanding t+h, and ultimately how you collected this incredibly useful package for all of us Important and great.
Perhaps you could post this in h and earpain section if it isn't already - imo this should be the first thing people should meet there as it's informative, empathic, proactive and provides a hope.

 

[Zimichael]

Ummmmmmmmmmm.......Moderators???!!! Regarding Tenna's suggestion/request? Should the thread perhaps be moved to the Hyperacusis and Ear Pain section, or just a repeat post there with my "conclusions"?

My reason for NOT putting it in there initially is that it took me a while to actually go to/find that section (got too absorbed in the rest of the smorgasboard) and indeed I think the "problem" I am addressing is mainly to the folks with Tinnitus that sort of don't realize they have hyperacusis...like I didn't! Anyone going to the H and Ear Pain section, I suspect has already figured out they do have H, or maybe suspect they do, so they are checking it out.
Once there, my particular experience/review may be useful, but the emphasis here was to get them to that section or thinking that way in the first place.

What do you suggest?

And Tenna, thanks much for the thanks. I'm very glad that it helped and was useful to you. (So my "hope this helps even one person" goal was for sure met. Thank YOU!).

Best, Zimichael

 

[Tenna]

Valid points. It would just be great if people were met with a useful introduction to it, as you provided
And yes the point was to bring people there, the thread despite relevance will just slowly become obsolete here in support section, while it's much needed in earpain+h section in my opinion.
@Markku could we perhaps have this thread moved to earpain+h section, maybe make it sticky too there?

 

[Sen]

Thanks for the post, Zimichael.

I too suffer from hyperacusis and have found treatment to be less than useful. Although I have not given up, and I continue to work with sound enrichment and misophonia protocols, I have seen no progress in nearly two years.

I have grown somewhat tolerant to the pain and other symptoms, so I am less frightened by noise and more willing to expose myself, but the symptoms themselves have only stayed the same, some even becoming worse over time, especially compared to the beginning.

 

[Snake Plissken]

Genuine question: through what mechanism can sounds that would in no circumstances damage hearing (<85DbA) cause a permanent increase in tinnitus volume? To me it seems clear that it could only affect perception.

 

[mmacabre]

tinnitus IS a perception. you don't need to have damaged hearing to have tinnitus because tinnitus is a central nervous system disorder. actually yeah don't ask me why that is, all i know is that it's happened to me several times

 

[Sen]

Professionals frequently refer to tinnitus and hyperacusis as non-damage, which is why I find it odd that damaging levels of sound are used by the same professionals as a measure for what can or cannot worsen tinnitus and hyperacusis.

 

[Zimichael]

As mentioned, this is mainly a thread to hopefully get more people realizing that they may have some hyperacusis along with their tinnitus...especially at initial onset, and then act accordingly. If just tinnitus (and yeah that "just" is a loaded word!) there are a whole lot more options for help and amelioration that become 'complicated' if H is jumping out of the box too.
Examples that can work well with 'just' T are the sound exposure modalities, like T spectrum focused hearing aids (or the opposite, where that spectrum is eliminated - 'notched sound' I guess it would be...Yeah, yeah, don't ask, they are diametrically opposite, but both "work" or can work!), sound generators, pink noise, white noise, working on the anxiety to realize sound exposure is 'good' and OK...And so on.
A lot of this stuff goes out the window if a good dose of H is involved...IMHO, of course. That's where the usefulness of realizing it comes in and the approach differences thereupon. Then checking out the Hyperacusis info. Etc., etc.

As to this: "Tinnitus is only Perception" that comes up endlessly. Well, I'm hopefully not going to get too going on that here, as I could spend hours on this one! But ultimately EVERYTHING is only perception! Trouble is that "perception" can be real enough to be as solid as anything like a rock in my hand, or getting kicked in the kidneys, or...pain. Hell talk about something subject to "perceptional variability" pain is sure a hot ticket item for that! In short, all of life is perceptional.

To me the argument/proposition is mostly academic and of interest to researchers and people trying to figure out a cure. It's also useful as a concept to work with for Tinnitus and those who have it. But in no way do I accept that tinnitus is only a "perceptual" condition!!! No, nada, nyet, nein, non, whatever language you want...Not to me. In fact I find it almost insulting. *[Not being personal to you here mmacabre - don't take this as being directed at you. I know where you are coming from with that statement above].
I darn well have enough time, experience, levels of change, knowledge of what happens with my T conceptually and 'real-ly' to absolutely rule that out. "Perceptual" adjustment changes how you "experience" and react to your tinnitus...T is ALSO a physical condition, a damage condition, and subject to very physical things like sound exposure levels and their consequences....and, thereafter to the organism having these "perceptions = ME or YOU!

Yes the "perception" part is there and changes over time. But I darn well know, very well indeed, that basic volume for instance does not change over decades. That is objective fact...to me, to my experience. It is (also) what I call "real". Not perceptual. Just like the scars on my arm and leg from falling off my bike as a kid are still there. The pain perception of that went away a few weeks after the event, but the physical evidence is still there....Same with tinnitus!

For me.

No doubt, this will not go down well with some folks, but there it is. "Perceptual" tinnitus is all well and good for a lot of people where (what is it? 80% or more) it doesn't increase in volume, it fades over time or sits there and becomes a non issue after 6 months, a year, 2 years. The brain tunes it out...Cool, great, wonderful! That's because it is not getting re-triggered the whole darn time!!! If it was, then the "perception" would not fade it out quite so easily and the attitude that "it's just perception" would be somewhat tempered I believe.

Thus back to this thread. If you have hyperacusis, I think you are going to have some issues with "it's just perception"...at least while the reactivity is there. That's my point.

Yeah, I finally got a bit hot under the collar about this. But there comes a time....

Take care, Zimichael

 

[mmacabre]

I feel that perceptions are the most real experiences one has. Perceptions are more tangible and overwhelming than sheer logic when it comes to me at least. I actually agree with you in sentiment 100%, i just think perception of tinnitus, while in a literal sense is just a perception, is an incredibly overwhelming experience in terms of its severity and its constancy. The word perception has this connotation of being contrived, exaggerated, and "in ones head", but that's just because many don't understand or care to empathize.


F**k em, i say!

 

[Zimichael]

Geez, I still don't get where this magic button/method is that puts @mmacbre in here automatically! Oh well...

Anyway, m I likewise agree with your sentiments above. This T thing (and H) has to be about one of the most frustrating conditions to describe in terms of "reality" as all sorts of variations on the theme occur. And the brain scans back that up. Is a hybrid tear-your-hair-out animal in full mating mode, with every dance and diddle going on. I mean look at the "notched" v. "un-notched" sound/frequencies thing. BOTH work for people, some people??????????!!!!!!!!!! What the F is going on then "objectively"??? [Note that "objective" is a counterverse word to "subjective", which often gets readily attached to that magic word "perception"...as in your perception...as in thus not universally real...as in, blah, blah, blah.]

Anyhow, I think this has been beaten to death enough for one thread.

Like your summary. Like your attitude. Like your cognizance of empathy being a pretty useful thing for human interaction.

Best to you...(and I need to get breakfast!) Michael
P.S. Your 'Profile' gives me a no one-stop-shop idea as to: where you are; how you got your T; etc.

 

[Street Spirit]

Professionals frequently refer to tinnitus and hyperacusis as non-damage, which is why I find it odd that damaging levels of sound are used by the same professionals as a measure for what can or cannot worsen tinnitus and hyperacusis.

wow really good point Matt..lol

 

[Cor]

@Zimichael I think i totally fit your explanation. I have tinnitus in one ear (although the other seems to be lonely and wants to join in now), and I also have a really annoying 'reactive tinnitus'. My normal tinnitus is a hiss/ringing, which is fine. I see myself being able to get used to that in the future, and I have had times where I already ignored it for hours on end.

But not so much when my reactive tinnitus comes to play. It is a much higher pitched, dentist drill like sound that responds to white noise type sounds. Things like the shower, crumbling up a bag, etc, have an immediate response with this sound, and it goes away when the sound stops...most of the time. Not always. Sometimes this high pitched noise stays with me for the whole day. Those are the really bad days.

My gut feeling is that exposure to this 'reactive tinnitus' is making my underlying 'normal' tinnitus worse and worse over time.

 

[jazz]

The main point that I want to emphasize, is that if you have tinnitus and hyperacusis, be careful not to get too caught up in expectations and approaches that may not be realistic for you. This, especially if you are new to T and may not even realize that you have hyperacusis along with it.

@Zimichael Lots of excellent "life" advice in your posts. Thank you!

 

[DutchGuy]

I 'got my life back' three times so far just goes to prove that even with the most horrible levels of T and H it is possible…but takes time.

Thank you so much.

 

[Mark McDill]

This post is coming out of a reply I wrote in another thread, about what defines "severe tinnitus". You can find that here: https://www.tinnitustalk.com/threads/define-severe-tinnitus.5081/ It got me mulling the differences between straight up tinnitus, and tinnitus with hyperacusis hitch-hiking along with it. Tenna, who started that thread, kind of gave me the shove to finally address this more fully. In addition I perused more of the threads in the Hyperacusis & Ear Pain Forum here on TinnitusTalk . [For those who have hyperacusis, go there and look, lots of good discussion!]

Why then bring it up again? What more can be added to what has already been said?...The answer to the latter is: "Not much!" But I see no harm in repetition on this topic, as new people are joining this site every day and the "Hyperacusis" part of the equation is very easy to get confused about.

Hell, I had tinnitus for 50 years before I knew what hyperacusis was, even though I realize now I had experienced in 1980. It took a major T (tinnitus) and H (hyperacusis) combo in 2006 to introduce me to what it really meant…And, to add insult to ignorance, no-one ever told me about the potential for increasing H, (or at least slowing down habituation/healing) by 'over protection', until I joined this TT Forum six months ago.

Pretty stunning huh! If I can be that ignorant after decades of this affliction and lots and lots of research, questions, docs, audiologists, practitioners of all stripes, etc. it makes me wonder. Which = kudos big time to TT Forum and those who brought this site to life - Thank you!

OK, that's the intro. and as usual I doubt this is going to be a short post (not my style – sorry). What I want to add to the discussion is that I have some differences of opinion on the conventional approach regarding how to deal with T + H…Though I fully agree that there is so much individuality and difference in how people present and experience their tinnitus, or T + H, that indeed it is not something I am going to go to the wall about.

The main point that I want to emphasize, is that if you have tinnitus and hyperacusis, be careful not to get too caught up in expectations and approaches that may not be realistic for you. This, especially if you are new to T and may not even realize that you have hyperacusis along with it.

I say this because in retrospect, I initially thought that hyperacusis was automatically a part tinnitus. It is not. It might be, but it doesn't have to be. Also it may be very, very temporary and dissipate far more rapidly so that in a way it's hard to know you even had it. The plain ol' T however, tends to stick around and thus appears to be the only thing that 'happened'. Fortunately, I think this is more the norm – thank goodness!

In addition, I have had many conversations, phone-calls, discussions, etc. over the years with people about/with tinnitus which I am drawing on, as well as way too much personal experience with it's vagaries. By that I mean four permanent increases in T 'volume' over my lifetime which gives me a somewhat unique perspective perhaps. These increases were caused by sound exposure and ototoxicity from meds, so I have experience for both and the uniqueness of both.

To be clear…I am not writing this as some sort of addition to the "horrible scary stories" that frighten newbies to death and are no doubt somewhere on YouTube or the internet. I have never bothered to find any. (Ha, ha…I have my own horror story to live with! OK, OK, just half kidding I suppose). In fact the fact that I 'got my life back' three times so far just goes to prove that even with the most horrible levels of T and H it is possible…but takes time. [Obviously I could write a book about all that so if anyone is really keen on seeing more, just go to my profile, past posts, and you can see some of that 'history' there].

So T with H…To me, the hyperacusis is the biggest "bad boy on the block". It really wrecks the habituation process as it continually spikes the tinnitus, causes a legitimate fear and avoidance of sounds, and can very easily stimulate the over use of hearing protection. That last point is addressed throughout this site in various places and a typical thread is this one: https://www.tinnitustalk.com/threads/overuse-of-hearing-protection-what-do-professionals-say.4905/ It's also one I have some contrary opinions about.

In general with T therapy there is a lot of emphasis put on exposure to sound to combat adopting a fear of sound and shortening habituation times, etc. Warnings of over-protection prolonging or even causing hyperacusis are part of that package too. In general I think it is correct, but if you have hyperacusis already – watch out! I would far prefer a prolonging of hyperacusis than a whole new jump up in permanent volume of tinnitus!!! I think there is a real danger of this happening . Case in point…my damage in 2012 was precisely that. To add to the cruelty of it (can't think of another word), it was truly a "stealth" attack and really rocked me hard. It is perhaps the hardest to adjust to and I am still struggling with it. After coming so far over 6 years to just get trashed again…Well, I have a 'grudge list' for the hereafter and me and the Big Guy (or Gal) in the sky are going to have a helluva fight about this. Tinnitus has to GO! Suffering has to GO! I mean, let's get some DESIGN CHANGES on the cosmic ballot…Ummmm, sorry I digress.

This 'don't over-protect' thing I think is over-done.

Look, way back I bought the line that it took a lot to cause a permanent increase in T volume. This was borne out by the fact that I lived a darn normal life and got exposed to plenty of loud sounds (even a Rolling Stones concert inside for Pete's sake) without my T increasing for more than a short time or until a night's sleep calmed it back down to baseline. Why would I worry too much about it if it did that? I didn't. My T was just a thing I had that really didn't affect the quality of my life that much (the 'golden standard'). It bothered me if I tried to meditate…Hah! Big bleedin' deal. Seems quant now in my new 'sound reality'.

People with this 'normal/single' (what the blazes to call it???) kind of tinnitus I think have a hard time really grasping what it's like to have hyperacusis along with it. I sure didn't! And I should have, as by 1980 was at stage II volume level and had even had hyperacusis for a year or so. I just didn't realize it and thought it was part and parcel of the 'louder tinnitus' caused by excessive sound exposure. Seeing as in a couple of years I adapted to this new tinnitus level and if it ever got zinged it went back to the new baseline overnight, I sailed on in the seas of life pretty much as before. I did protect when driving heavy equipment, but that was more because OSHA had done a good job and it became natural to see people wearing ear-muff hearing protectors using leaf blowers, chainsaws, tractors, etc. I primarily figured it would preserve me from old age deafness. My tinnitus sure did not stop me from parties, exuberant conversational group dinners, crowded places, movies, etc., etc. "Full habituation" as the professionals like to call it.

Then came the real Hyperacusis – in 2006. All those old rules got chucked out the window. In fact the windows in my car had to stay closed, as couldn't handle road noise, even with full earplugs in! Yes, a very different universe. One where "over-protection" was an absolute necessity not an option. One where any type of masker, sound generator, notched hearing aid, white noise, pink noise, 'noise noise', was traumatic. The slightest noise over much than a whisper almost sent my new level III ringing/tinnitus through the roof. Needless to say, it was severely debilitating and traumatic.

And I know some of you on this board are in that condition (as you have written to me)! As you know, my hard earned advice is: DON'T FRET TOO MUCH ABOUT NOT GETTING ENOUGH SOUND EXPOSURE…JUST SURVIVE! If you can do that, you are doing well. Don't become another suicide statistic (yeah I'm talking to myself here too some days) as IT DOES GET BETTER!!! Take your time. Protect the hell out of your hearing if you have to but always aim at reducing that at your own pace.

If you are getting professional help, ditch them if they are not 'grokking' (getting it) regarding your reality. This very much includes TRT, or 'purported' TRT (a touchy subject, as even Dr. Nagler has come out and said that there is hardly anyone he considers qualified to do the stuff right – but indeed, TRT proponents are generally 'not that much in agreement' shall we say, with what I am writing here). Instead, initially try and find emotional support rather than "hearing support" if you are in the severe hyperacusis/tinnitus zone and trying to force yourself to "deal with it". Just let some TIME go by…and yes, unfortunately, that may mean a few years. Yeah, I know that's hard for younger people to go with I know, but we are talking the rest of your LIFE here. Do not end up like me having to repeat this whole game successive times, as it does not get easier with 'practice'.

This site offers incredible resources and information on all this. For T & H you don't really need any other. If a "true cure" happens, it will be posted here in nano-seconds. If you need specific info do a search – you will be swamped with high quality, up to date material. If you need support, there are numerous avenues and wonderful people willing to help. It's a resource I sure wish I had in 2006.

So, to end off (yeah, finally!), to those of you with Hyperacusis along with your Tinnitus…Glean, learn, reach out, try things. But be prepared to have setbacks. Be prepared to invest more time in recovery than you may desire or expect of yourself. Don't judge yourself against those with 'plain tinnitus only' who may have rapidity of progress you follow with envy. Take your time and err on the side of caution rather than haste. Be real with your hyperacusis as it will tend to govern what happens to your tinnitus and your perception of it – not the other way around!

Take care and I hope this long treatise helps even one person. If so it's worth it!

Best, Zimichael

Zimichael
Great post! Thanx so much. Now I have a dumb question; what, exactly is Hyperacusis? I always associated it with pain while hearing, not just elevated T while hearing. I don't believe I have H but now I'm not sure (as my T cranks up in loud places).

Mark

 

[kmohoruk]

@Mark McDill

While some of the definitions are debated, Wikipedia has the official definition as:

Hyperacusis is a health condition characterized by an over-sensitivity to certain frequency and volume ranges of sound (a collapsed tolerance to usual environmental sound). A person with severe hyperacusis has difficulty tolerating everyday sounds, some of which may seem unpleasantly or painfully loud to that person but not to others

I have it in more of a mild form and for me beeps from electronics (High frequency) bothers me - as well as car honks from auto locks.

 

[Mark McDill]

@kmohoruk
So it's not just related to pain, that makes sense. I've noticed I have an intolerance to certain sounds/freqs too; but it is likely a very mild case. Guess I never thought about it that much, good to know.

Thanx so much!

 

[Zimichael]

@Mark McDill and @kmohoruk ...

Well, that's the python in the pancake re "what exactly is hyperacusis?"

Indeed there are definitions, and they vary. My long ramblings and questions in the posts above show that I am still "unclear" on the issue, especially when one brings in what I call "reactive-tinnitus" to the mix. And here I do not mean if you get a temporary T spike from eating some hot pepper or whatever. I mean purely "sound" reactive. Some sound input/impact is the trigger that cranks up the T volume. *[That example somewhere of Jay saying he noticed his T shot up for about 15 seconds when he clapped his hands is a fine example]. This can last 15 seconds say, like with Jay, or "forever" like it has with me on two occasions - though I have also had other times where this "reactive T spike" has slowly gone down over periods of weeks.

I can imagine a number of options with trying to get this straight when you mix T and H...it's a potential zoo. And please, my definitions are purely for clarification, not demeaning of the pain or suffering associated with any of them! I also am assuming common sense here re subsequent sound exposure...no standing in front of speakers at "Woodstock" revivals, or working on an aircraft carrier deck without heavy duty hearing protection.

1. "Plain Tinnitus" = Innumerable subjective sound options and inside-head volumes. Once established does not vary or react to external sounds by permanently increasing in volume. Spikes may indeed occur but always return to baseline. This would include spikes from a hot pepper, or Viagra, or whatever. Key point is they are unthreatening because experience shows they go down afterwards. My first two stages of T were like this. I could expose myself to all sorts of goofy loud sound even and the T volume would not be affected or would come down to base real quick.

2. "Plain Hyperacusis" = Ummmmmmmmm...I'm already lost with this one as evidenced in the thread! However, let's just say that this involves @kmohoruk 's definition above, and does not include the presumably "residual physical pain" I think I have seen in some descriptions. Well...problem is, how do you define "pain"??? It's hard to imagine hyperacusis even being an issue if there were no pain involved, otherwise what's the big deal? It's some kind of pain for sure. So assuming discomfort = pain in some form let's accept that this is integral to Hyperacusis, but that it will vary in intensity all over the map. Debilitating for some at a whisper, but only equivalent to others if a car alarm goes off as they are walking right in front of it in a parking lot. Etc. The key here is that it only lasts while the sound stimulus is happening and then dissipates back to baseline afterwards.

3. "Sound Reactive Tinnitus" = Same as number 1. but the T volume itself zings up all the time if exposed to a certain threshold of sound. The easy thing would be to say that it happens only above "x" decibels no matter what the source. But that's not how it is for me (or others I have talked to). An 80 dB waterfall seems to be different to an 80 dB clap of the hands, or bang of a hammer on a piece of metal. Yeah...lots of variations in here! The "hardness" of the sound has a lot to do with it I think.

4. "Reactive Hyperacusis" = Even bigger Ummmmmmmmmmm than number 2. above...As hyperacusis is almost reactive by definition (whatever that definition is). So maybe the best way to describe this version is that exposure to a sound level over and above the trigger level for the baseline hyperacusis pain causes a permanent increase in subsequent hyperacusis threshold. This would actually mean a decrease in threshold level. Lower decibel levels would cause pain/discomfort than before, or that previous tolerable levels become intolerable.

You with me so far???

Then it gets complicated, as you can mix these all up! Plus you can add the word permanent to numbers 1 to 3 that gives them even more confusion! Once you realize that T or H can become louder and/or more reactive and not go down - except over years (or never), it of course has sobering effects on the "fear factor". The ramifications and challenges involved in each category are somewhat different IMHO. The mixtures even more so.

"Plain Tinnitus" for example is frightening when we first get it but the bulk of the knowledge base out there is geared to it and there are plenty of strategies to help. Just plain "time" and common sense in relation to future sound exposure takes care of the vast majority in this category. I do not mean to be trite here, but it is kind of easy to deal with once the panic is over, even if quite loud. The habituation numbers attest to this.
Once we add "Hyperacusis" to the mix and especially the "Reactive" element to either T or H or both in combo......Ahhhhh, then it gets much, much harder. Then throw in solid experience of permanence to any waywardness and - yeah Yuk! Big time.

So, to go back to your question Mark..."It's complicated!"

I know first hand because I lived richly and fully for 24 years without any fuss with number 1. When I got a doubling of that initial T volume and some 3. got added, the latter was pretty mild so the panic died down within a few years and I returned to being a semi idiotic happy carrot. That honeymoon lasted for another 26 years.

Then came the killer H...Hyperacusis as per number 3. that did not go away quickly (as in retrospect I realized I had had hyperacusis for very brief periods at the start of both my previous T onsets). It made 'plain' tinnitus a walk in the park to live with, despite the fact the T volume had once again increased to a new even louder level.
I guess I actually had all four categories above by then (2006) as the reactivity of the hyperacusis took 4 to 5 years to become semi acceptable and I was not reaching for earplugs at every sound threat.
By this stage the tinnitus, reactive tinnitus, hyperacusis and reactive hyperacusis were all so intermixed I'm darned if I know which was what any more. It was too intertwined to sort out.

As a final chapter to this mix, that permanence thing sticks it horrible foot in to give all this a deeper tangle of complexity. I mean all of us know that threats that go away are easier to laugh about and accept afterwards as that is exactly what "thrill rides" sell. It's only problematic if the 'thrill' turns a bit 'too thrilling' and the spinning chair at the carnival goes flying off the chains and you (luckily) crash into a circus tent. Needless to say most of us have a little more fear of fair-grounds "consequences" thereafter.

So, trying to figure out what "Hyperacusis is" gets too jumbled up with all these other aspects and has no straightforward answer...to me, or for me. I also suspect that others have "mixtures of the mix" so to speak, and may be equally perplexed at trying to figure out the best way to deal with things. I for sure am still trying to puzzle it all out.

Hope this helps, but maybe it just confuses you even more?! Sorry...but tinnitus alone has a habit of doing that to explanations. Let alone adding in hyperacusis.

Take care, Zimichael

 

[kmohoruk]

That was an interesting way of summing up a lot of the different variations of T that even myself have read about. Thank you!

I forgot to ask @Zimichael (and I apologize if I missed it) but how did your original H come on in 2006?

 

[Mark McDill]

@Zimichael @kmohoruk
A lot of good info (and clarifications); now I'm pretty sure I have some level of reactive T since certain sounds/freqs can send my T into a whirl. If there is an H component in the mix I wouldn't know. Fortunately, I'm habituated so when it goes up I could care less and it always comes back down pretty quick. I guess I could worry about my future, but frankly I'm just too lazy for that .

Seriously, though, I think it wise to take common sense precautions and apply lessons learned.

Thanx Guys!!

Mark

 

[Zimichael]

Oooops...an add on to my long treatise three posts above, regarding number 3. "Sound Reactive Tinnitus"...

This "reactivity" would include a sort of "3. Part B." which adds tremendously to the difficulty of dealing with it all. That is the: Increase in sound volume of internal tinnitus if put ear protection in.

Now of course fiddling around with earplugs or over-head hearing protectors becomes second nature for a lot of us T folk, but if the internal T volume just keeps getting louder and louder when sticking in earplugs, it makes life even more challenging. For obvious reasons.
Even if this is a purely "subjective perception" it does not mean it is not real enough to drive one to drink quite rapidly, as we all know that low T volumes are much easier to deal with than loud volumes - generally speaking. The natural conclusion if one also has this "reactive effect", is to not want to have earplugs in for very long, if at all! But then that means more potential damage, that has very much proven to be the case for me. "Catch 22!"

From a practical viewpoint, the solution is to avoid dangerous sound situations or use plugs as little as possible...which indeed means...avoiding dangerous sound situations! Which is about darn everywhere that humans gather! Thus my plugs in or semi in, hit-and-run trips to town for food, library, supplies and a life of much more isolation than I could have ever imagined.

Oh, a tip on this particular problem, is that "open ear canal protection" ( = over head earmuffs) seem to slow this "internal reactivity to sound protection" much more so that plugging the ears themselves, even if semi-open type plugs like my Etymotics, or Sonics. 'Full protection' plugs create a much quicker acceleration of internal T volume and I go batty in short order.
So you can see why places like back-packing in the high Sierra's, where I do not have to worry about any hearing protection (except in lightning storms) create such a welcome interlude of relief for me.

One day I will write up a whole lot of tips and tricks on this I guess, but the subject may be so unique to so few T people I'm not sure it will have relevance. What do you think? Waste of time? Too esoteric?

forgot to ask @Zimichael (and I apologize if I missed it) but how did your original H come on in 2006?

Ahhhh... @kmohoruk "Busted!"...You have not been to my oh so convenient TT "Profile" page and clicked on the "Information" tab! There you would find this (very abbreviated version of the events):
That all changed in 2006 when hyperacusis and louder ringing joined the party (sic) thanks to a cocktail of ototoxic meds which made me feel like my head was getting blown off inside. [Neomycin & Amphotericin primarily]. That was a mistake on the part of my docs, but I was really ill and they were doing their best. It was one of those 'irreversible mistakes' unfortunately.
I could hardly handle it for years. Depressed, scared, life turned upside down...a mess. The added reactivity of hyperacusis makes life much more difficult.

Don't worry, you are not the only one ... though I find such information profiles save me a lot of time and answer a number of questions very quickly and easily. They are a great function in TT, but seldom 'active' unfortunately. Indeed yours at least has some info. there - good for you!

Best, Zimichael