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PercyB

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Reply with quote  #1 
Hi,

I have a certain degree of hyperacusis due to an acoustic shock injury many years ago. It has been manageable the last few years. Recently I attended a silent meditation centre as a means of trying to relax and come to terms with anxiety etc. However after two days I had to leave because my anxiety went through the roof. I was being startled all the time in the meditation hall because obviously everything was so quiet which lead to heart racing, not sleeping etc. Now I really think meditation and such techniques are really important in calming the sympathetic nervous system but it is difficult to achieve the benefits if your ears are always on high alert. Would it be better to meditate whilst listening to pink noise? Then the troublesome ears would be occupied and not able to constantly send the messages of 'danger' 'danger' to the brain whenever there is a creek in a floorboard!

How do I know it is even possible to meditate whilst the ears are going over the top? When I am quiet and trying to focus they are clearly doing their best to sabotage everything and just send messages of anxiety. I feel I have jumped a little too high up a tree and can't get down. Just need a mechanism to build a ladder to return to some sort of normal.

Anyway, just wondered if anyone had experienced anything like this or has any suggestions.

Many thanks

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AnthonyO

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Reply with quote  #2 

Percy, I read your post, thought about it intently and have some thoughts regarding your inquiry.

It is very controversial, of how much sound we need in our backgrounds at all times...at some of the times, or none of the times.  I have heard all scopes of opinion about this, over the past 4 years of my living with hyperacusis, due to acoustic shock syndrome.  I have read posts where someone said, that a person with hyperacusis and tinnitus should NEVER be in the dead of quiet, for that will just TURN UP your auditory system even more and make things worse, therefore you should ALWAYS have on some sort of background noise or sound enrichment to encompass your space & world.

Others have said to do what is best for YOU, by figuring out how much sound you can take in and feel comfortable with and work with that.  Yet, others have no other option, than to stay indoors for much of the day, because sound & noise offers nothing but pain, hurt and a whole world of misery.

My heart break and shatters in half, for those who suffer greatly.

You speak of "Meditation" Percy.

Meditation can be, generally, a good thing, IF like you said, you can actually tolerate the dead silence.  What a double-yammy, huh?  During quiet meditation courses, it is required that the rooms or halls be actually that, "QUIET"...but...those of us who have this syndrome should never be in "quiet"...yet, we're supposed to find good, ample & successful ways on how to calm our nervous systems down, right?

This is both a maniacal, diabolical & unnerving conundrum to deal with, to say the very least...!

As for me, I may be much like you?

I have on two fans in my office at work, generating a "static-like" white noise background sound to combat "dead silence".  At my apartment, I have a programmable desktop Sound Spa by my sleeping quarters, that is running 24 hours a day/7 days a week.

However, a friend of mine, who has severe hyperacusis, thinks this is just plum-nuts-loco!!!  And he would go insane with pain, if he was around so much "noise" all the time...even if it was just low-level "static" noise, which it is.

My problem now, after tempering my brain and auditory system to this "static" white-noise all day long for the past 3 or 4 years, is when I come over to his house for a dinner, it is DEAD quiet, I can hear nothing but LOUD tinnitus and a deathly form of "silence" permeating my whole empty & brainless head!  It is very uncomfortable, surreal and almost distressing!  Any little tiny nook or cranny that flings in his very large & spacious house, I practically jump out of drawers & sneakers!!!  However, he doesn't jump at the small noises at all, not one bit...loud noises, YES, but minuscule sounds; no.  It's almost the complete opposite between he & I!!!  Yet, we BOTH have hyperacusis!  The thing is, we have both "tempered" ourselves to our own personal settings of sound & background noise tolerance.  Even the "thought" of him running a 24/7 sound spa of nature sounds in the background, shutters him!  Me NOT having one, shutters me!!!  Insane, but oh so very true.

(BTW, over the past 3 or 4 years, he & I, have practically become BEST friends!  We both fully understand and respect one another's "relationship" to sound, noise, silence...and Hyperacusis.  Imagine that, huh?)


Many doctors, audiologists, oto-neurologists, physiotherapists and neuro-physiologists might "applaud" me 100% (foolishly and prematurely perhaps) for allowing background noise into my life, 24/7.  Maybe so, BUT when I am in silence, dead sound in the background, like in meditation, an empty church hall for prayer or a monastery...one small noise...and my head hits the ceiling, like a horse fly being swatted by the hand of King Kong!!!  That is something, that all these "doctors" can't understand nor measure with their Scopes, Analyzers, Hearing & Listener-Discomfort-Level Tests and Sound Proof Booths.  Impossible.

Thank you Percy, for hearing my somewhat "humorous & slightly demented" take on all this evaluation on "silence" and what it means to me and what it may mean to others.

All I can say my good friend, that in time, you may just have to find the best way, that is best for YOU, to conquer or at least work well, with the issue, of "sound and silence".

It's tough, really tough and there are no simple answers...and there probably never will be, regarding our infirmity, known as Hyperacusis.

AnthonyO

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saab1216

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Reply with quote  #3 
Anthony O....I can relate to the dilemma of pro vs No (sound).
I, for one had the very same issue you describe so articulately and at times plain humorously. I ...to this day often limit my surroundings to complete quiet. I have a small degree of tinnitus and find it a little annoying at times. There was a time however, that being in total silence never appeased my auditory system. Any sudden sound was greeted as an intrusive jolt of electricity to my nerves. I could relate this to the results of dynamic shift or range intolerance due to Hyperacusis. After all, The one and only Dr. Jastreboff who pioneered the famous TRT.progressive treatment, placed much emphasis on the limited auditory receiving end.This in a majority of his hyperacusis patients. When the auditory system is in complete silence....the vigilance of the sufferers become heightened .In response to the heightened lack of sound stimuli, the sudden increase of sound whether loud or soft....pitched high or low...affects the very nervous system through the Hyper auditory system.
It was my personal practice to keep white noise avaliable within the first couple of years to strategie against this and tinnitus. In time, my auditory system became accustomed to the white noise but also demanded a much louder and less subtle means to "distract" me from my surrounding levels of sound. Ironically, my tolerances to loudness succumbed more as my intolerance to sudden shifts of soft sounds increased. Just hearing someone tapping their fingernails would be putting me to the brink of insanity. Yes....misophonia can describe some of what was going on but...the auditory gain was noticeably increased around the more subtle sounds now...not so much the obvious louder type. I can honestly say that any sound therapy you use has to be tailored to fit your needs. Your ears are constantly changing and adapting to surroundings more than any other senses in your human makeup. We are all separated by different geographical boundaries and can not compare what our daily lives hear or how often we hear certain sounds .By definition of one sound therapy that works perfectly..there are none . It's got to be sometimes by trial and error. Use what feels comfortable but not in excess. How can we know when it's excessive? This is what limits many of us by causing fear and apprehension. Fighting the fear becomes the majority of rungs to climb .
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AnthonyO

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Reply with quote  #4 

Thank you Saab1216; your careful, specific & thorough depiction of dynamic shift, range intolerance and heightened response goes to further solidify some of the eluding mechanics of Hyperacusis and what may be done to hamper it; which very may well be, a unique and curtailed approach.

Your thoughts and writings are reminiscence of years past hear on The Network, when commentators, who have now been long gone for some time now, spent hours & hours grappling over, with great diligence and deep thorough analysis, the throws of Reduced Sound Tolerances, and ideas on how to combat it and how to succeed past it.

AnthonyO

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saab1216

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Reply with quote  #5 
Anthony O
It's a two edged sword...the fact that many answers can be found here if one dives deep enough. Unfortunately, there can be a redundancy of dead end roads that have been accidently traveled on.Some have a cliff at the end. I'm here to show that there is always hope and a hopeful road to recovery. It begins with knowing ones proper limitations...Parameters and ability to take risks. Yes...risks. The human spirit is one thing that goes far beyond imagination if we have faith. We can conquer anything.
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PercyB

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Reply with quote  #6 
Anthony,

Thank you so much for your considered and eloquent reply. You are completed right in saying that everyone has to find the answer that fits them best. Which in itself, is daunting because your head is filled with ambiguity and more questions. One has to be brave. Brave against the thoughts of negativity. It was thinking that created hyperacusis. That thinking was given to much credence, pathways were laid down in the brain and aversion was created. Presence is key. To have awareness of the present moment as it unfolds is really important. You are here, you are conscious, you are in the wheel house. Thoughts still come, but there are observed and not enforced. They dissipate.

An attempt has to be made to take some power back from the limbic system and amygdala. I truly believe that can be achieved by paying attention to the present moment. Through meditation etc. I think it is too easy to become absent in your own life, lost in thought, ruminating, analysing the past and agonizing over the future. I know I have indulged in this way of being most of my life.

If your mind and body was a house, you would need to be there sometimes and check in with what is going on, otherwise your dog is going to wreck the sofa or your teenage son is going to have a party and trash the place! You have to show up, you have to be there, you have to be a warden. OTHERWISE.... chaos!

Easier said than done right?! Meditation can be used as a tool to foster presence and take some of the power away from negative thought patterns. But it is a practice, a form of training and it takes time and persistence to master. Just like anything in the world actually worth doing. I think it can really help people. As for the situation of trying to meditate whilst having a hyper-vigilant auditory system, I think steady background noise is good. Anything to keep the idiotic part of the brain occupied so that you can actually make some progress in calming the whole system down. One day you wont even need the background noise because you will have reorganized your brain into a calmer state. The brain is plastic! It is scientifically proven. Things can change, everything is impermanent.

I am always amazed by hearing the factual story of a Buddhist monks unflinching ability. Members of a police dept and a monk were fitted with skin sensors and asked to stand with their backs to a firing range. Guns were fired intermittently without warning. All of the police officers flinched/jumped every time a gun was fired, the monk did not measure movement of a single muscle.

Thanks again Anthony for the reply. I wish you the best and hope you get to where you need to be! Sending vibes.

P


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anniekin

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Reply with quote  #7 
Great nuanced discussion about how differently we all experience H.  Thank you for the quality posts! 

Here is my conundrum. I have been wearing my sound generators for almost 3 years, and recently due to lack of any progress I just got sick of them and stopped wearing them. I haven't worn them for a couple months now, and I can't tell any difference at all in daily life. They also don't really help me tolerate sound around me at the time when I wear them, like they seem to do for other people. Never have. So I am feeling very unmotivated.

I don't know what to make of this. If it was about something less important than my hearing and my whole life, common sense would seem to dictate that I would just say well that was a bust, leave the treatment in the past, and move on. But there are all these people on this forum dedicatedly wearing their sound generators and running fans at night or whatever, so I feel like maybe I should just keep at it.

I know if I talked to my audiologist she would say nobody really knows what works and  "it's up to you". I feel vaguely guilty not wearing them, I don't want to bail our on myself, but I really have no idea whether the small degree of improvement I have after 3 years is due to the passage of time or TRT treatment and I think my audiologist would agree that it is not possible to tell. I have also found that the results of LDL tests do NOT correlate well with actual life. My LDLS can be better on paper, but the change in what I can do in my life has been very minimal so I don't care what the LDL test says anymore. I suspect I would have to have much greater LDL improvement before it began to correlate with reality. I think last time I was tested I had gone from 50 to 60 or something. 

Discouraged, frustrated, giving up?? Not sure what's happening here. It is the 3rd anniversary of the attack that injured my ears. Not an easy time to be hopeful.

Any input would be appreciated. 
Thanks,
Annie kin


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AnthonyO

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Reply with quote  #8 

I can say, that I fully understand your heart Annie.  And I must say, I have felt the same deepest of despair myself, in the failure of my own full recovery.

I wore my audiologist supplied, $3,000 broadband sound generators and went through 2 years of a very rocky TRT program; and paid not just the high monetary price, but cannot say I reaped the full benefit that has been so widely talked about and attributed to Tinnitus Retraining Therapy for Hyperacusis.

Near the end of my therapy, I travelled all the way to Baltimore, MD, from Los Angeles where I reside, to receive advance "directive counseling" from a world renown "Doctor of Neuro-Physiology", but after three day long visits with him, I can verily say, I did not learn anything new and he didn't teach me anything that I already didn't know...and common sense told me too, it was indeed time to move on.

But today, as you made mention in your post Annie, I still keep on my multiple fans...as well as table top sound devices, drive with my windows cracked to let in fast driving wind & sound, walk through gas station parking lots with delivery trucks letting out their dastardly air compression brakes at what seems like to be 150dB loud, attend lunch meetings at work with co-workers laughing, applauding and having a jolly ol' time, while my auditory system gets blow-torched & assaulted with the Ghost Busters Gun!...and at the end of the day, I don't feel like I have made any long lasting, proven progress, but have come to realize that I have done ALL that I can do...and even so much more...and that I just have to accept the way it is now and realize it may very well be like this, for the balance of my life, here on God's green earth.

Oh yes, I too have little faith in the results of the proverbial, much revered LDL tests...little beeps of non-dynamic, benign tones, administered in a very controlled, safe & comfortable, highly secured & VERY predictable sound-proof booth...tones that in my opinion, I don't see how are likened to correlate with real, actual, everyday sounds & the "blasts" of life.  I believe cherry-flavored "Kool-Aid" tastes much more yummy! (...at least it does to my palette!)

But yet...everyday...whether I like the way the sun came up over my head or not...I manage carry on.

Recently, a rancher near where I reside, in rural Ventura County of California, has decided to shoot his rifle throughout the day with what sounds like blasts of Bird Shot, from 7AM to 5PM, multiple rounds...whether it's target practicing or quail hunting, each time, my brain perceives it as a cannon, blasting though my bloody cerebellum...dividing it into two, like Moses parting of the Red Sea!

Sure, I can file a complaint with the County Sheriff's Office, but something else, someone else, somewhere else..."something" will probably just end up taking it's place...and I'll just have to be ready for it, all over again.

The world cannot and will not understand Hyperacusis and other odd and rare forms of "decreased sound tolerances"...and come to really think of it...do we really blame them?

NOW...in lieu of throwing hot-red flaming darts at me...let's take a real good look at that last revelation, can we?

So much of the time, we implore our friends, family, co-workers & loved-ones, to PLEASE put themselves in "our" shoes...and that might very well be a legitimate request.  However, have we ever tried putting "ourselves" into "their" shoes?  I know, that sounds insanely diabolical, to say the very least!!!

But when I really think about it...what was normal life like for "me" before I came down with this evil Hyperacusis?  Would "I" have been quiet, kind and totally 100% mindful of that very suffering person sitting beside me, who was seemingly dying from this evil malady?  Would I???  Would I have really???  Many of us would surely stand proud and say with all our might, YES I WOULD HAVE!!!  But we really have to look deep within our own suffering souls...and come to grips with the hard cold fact...for without any knowledge or experience of living with such an eluding condition, there would be absolutely no way of "Walking-A-Mile-In-Their-Moccasins", unless for just ONE SINGLE DAY, you had to live with it, for yourself.

As 'bananacupcakes' pointed out, Hyperacusis is not terminal, but is invisible...we're not dying, and it is so hard and almost impossible to appeal to people's pity and request validation, when we look, just "perfectly fine".

All of us brothers & sisters on this fine & supportive network...may not all agree on the topics of this past week: "TRT/The One Proven Therapy", "Wearing Headphones All The Time"..."Medical Cannabis" and "Assisted Suicide or The Right To Die".  These are very divisive conversations and they tend to bring out the most controversial of opinions...and flare up the claw-laden fur on the back of our necks!  However still, as a long time member here on The Hyperacusis Network, I feel so very blessed and extremely fortunate that our good & faithful brother, DAN MALCORE has carved out of his life, the daily muster and blood, sweat & tears it takes to keep this much needed haven of rest, place of conservation & channel of support alive...for all of us to partake of.

In love & respect.

Your friend,

AnthonyO

(...and now, back to my refreshing cup of cherry flavored Kool-Aid!)

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anniekin

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Reply with quote  #9 
Anthony O, your replies always touch my heart, and you are funny too. Thank you so much. To hear someone honestly report on their feelings of TRT having failed them is actually very refreshing.

I believe I have been fairly lucky in having friends and family around me who have tried to be quiet even though as you say, they cannot possibly know what I am experiencing. And I agree that we like to think we would be perfectly accommodating if the roles were reversed but we don't really know. It also has become obvious to me that making noise is a form of expression that some people really cherish and it actually IS a big deal for me to ask them to quiet down, and so I don't always do that as much anymore. I am still sad and mad at times about the people I thought would stick by me, and didn't in light of the change in my life, but I know that happens to anyone with any kind of serious medical situation. There is one thing that I do really believe I would have done. I would send a card or email saying I miss seeing you, how are you. It can mean so much to someone who is isolated. Maybe it is only people who have had the experience of being abandoned when they got ill or injured who understand how important that small simple contact can be. I do wish that wasn't so impossible for some people to think of. Awareness of the huge value of simple kindness is in short supply in this world sometimes.

It is more when I am outside the protected realm of people who know me that I am reacting to assaults from loud obnoxious voices and other nasty sounds. I have always been sensitive, I think, in lots of ways. I have to have soft comfy clothes, pleasant not- bright lighting, etc. So it is not a surprise that the sounds that always would have been unpleasant to me are now intolerable intrusions. I get through my life differently from you, I have not been wiling to subject myself to lots of loud noise. I can only stand the noise of my tires on the road up to about 25 mph and then I put on my noise canceling ear buds, unless I am on a short errand, and then I make myself tolerate it. So many variables make a difference. Maybe the pavement where you live is not as gravelly and loud as ours in the Pacific NW. Maybe your car or your tires are a quieter type. I cannot imagine rolling down my windows to get MORE noise from my car. There are so many variables in sound, and in how we ear-damaged people perceive it, it seems really impossible to say what should or shouldn't be too much for any given person to endure. I would think for those of us with hearing loss, what bothers us would be affected by the range in which our hearing loss is worst as well. 

And there is personality-- maybe your personality is more suited to sacrifice. Maybe mine is more suited to rebellion. 

I know at a certain point in subjecting myself to loudness I find I just say, NO,  I am NOT going to put myself through this. If I had actually gotten more progress out of having exposed myself to unwanted sound I am sure I would be much more willing to do it. I feel that the only way I can really have a life in public is to use noise canceling when I am out there still doing the few things that constitute the joy in my life, like going to small acoustic music concerts, or the occasional travel experience, and some small group social experiences. I am willing to wear sound generators and run fans, or at least I WAS willing to--and play music at home or listen to other sound on purpose, and expose myself to the noise of the world when I am up for it in other ways, like a trip to a grocery store without using any earplugs, which is a very tough one. From what people on this forum have said, that may not be enough, I may be holding up my improvement by using ear protection for the things I use it for. But I feel like if I don't use the ear protection I do, I would truly be suffering and stressed out too much. So does this mean I am not willing to suffer enough to get better? That would seem to be the belief of the TRT people, although my audiologist has been pretty gentle in her "rules" compared to most others I hear about on this site. 

I find myself thinking that the people who are willing to put themselves through the daily outside world noises like you mention just MUST be starting out from a place of better sound tolerance than me. I was classified as "severe" by my audiologist, and I don't think I have moved very far out of that category if you go by LDL tests and self-reporting on the TRT "suffering scale". I think to myself, OK, maybe if I had started out with sound tolerance problems that were milder, I would be toughing out more of those noise things that people believe are making them better, and maybe I would be improving. In the back and forth dialog of this forum, I notice nobody is saying, you can probably be doing the following IF you have mild H symptoms, of try doing the following IF you have severe H. It is as though nobody is taking into account that these would be completely different experiences requiring completely different levels of sacrifice and fortitude depending on how severe your H is. This strikes me over and over as a huge, major gap in logic. Experientially, one size cannot fit all in this treatment.

I have thought to myself often in the last 3 years, OK what new sounds can I start making myself tolerate so that this process will start to WORK? But now that I feel I am losing faith in the idea that I am going to be improved by TRT, I am really un-motivated. I really feel at this point to continue living by the TRT gospel would require a much bigger leap of faith. Why would anyone continue if there is no evidence of improvement after the longest period of treatment time my audiologist has mentioned? For the first 2 years I just said to myself, well my audiologist said she has seen this take 2 years, or even 3, so don't even go there with the doubting thoughts. Now I guess it is like the doubting part of me that has been told to keep quiet all this time has come out of the woodwork and is making itself known.

I am sorry to hear about your shooting neighbor. I would have a hard time with that, particularly since I hate guns. And you live in a rural area where I would imagine you might have hoped for more quiet. I would report it, but I think I still have less of a philosophical attitude than you. I am sure it is bothering other people in your area too even those with normal hearing.

Reading these recent posts is very interesting, I appreciate now that I don't have any problem with silence. Of course I hear my tinnitus more, which I wish wasn't there, but otherwise it is OK. It does make sense what you are saying about making yourself dependent on whatever you believe helos you cope, the white noise, the lack of noise. You are very lucky to have a friend who gets it even though you have different experiences!

Thanks again for your thoughts.
Anniekin


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