Why Isn’t TRT the Holy Grail?

[bill 112]

Here is one of our biggest issues. They all tell us this with certainty that normal sound can't hurt us further, and yet all the while, they don't know. They don't even know what the mechanism of damage truly is, and yet they dish out confidant advice based on.....on...rainbows and unicorns. Some of us won't be hurt any further by normal sound exposure, then there's Bill and I'm sure others.

I'm slowly on my way to death I think,everything drags me further and further down and I never know what's too much for me because my pain isn't instant,it comes on after the fact.
So let's say I drive my car down to the store with earplugs and muffs on,things sound quiet and not loud so I'm ok with it.
Then I return home,take off my hearing protection and everything's fine and then the pain sets in and my T gets louder and louder.
Then I watch to on low volume,it's ok not bothering me then I go to bed and the pain starts along with the louder and louder T.
It's like a setback after the sound has long passed and I slowly but surely get worse everytime to wear I literally can't function anymore.
I lay in bed all day and even the sounds in my home are too much,I can't wear earmuffs as my own voice puts way too much strain on my ears so I'm just doomed from every angle.

Also Libermann or whoever it was showed that synaptic degeneration can be exasperated by low levels of noise,it doesn't happen immediately but slowly but surely they continue to degenerate and I fear that's what's happening to me,all these non loud noises are just wearing them away and there's nothing I can do about it.

 

[stophiss]

Here is one of our biggest issues. They all tell us this with certainty that normal sound can't hurt us further, and yet all the while, they don't know. They don't even know what the mechanism of damage truly is, and yet they dish out confidant advice based on.....on...rainbows and unicorns. Some of us won't be hurt any further by normal sound exposure, then there's Bill and I'm sure others.

That's right. One size doesn't fit all and perhaps should be the title of the thread. I feel for Bill. Hell, I believe my case isn't good but the world that Bill lives in frightening and I hope he finds a way to turn the tide back to better health.

On the subject of sound exposure, I will weigh in. I believe its plausible that an injured auditory system of a person with T and H cannot endure the same sound level as a person with normal hearing. A person with their gain turned up...aka H suffers could spiral downward with constant 75dB sound levels whereby a health 20 year old like I was once could go decades without issue like I did with no issue. I use the tennis elbow analogy. I was a competitive tennis player when younger and developed tennis elbow. Its somewhat analogous to injury to hearing...tennis elbow is developed generally through overuse and poor mechanics. Tendons and ligaments break down. If a good player continue to punish balls with tennis elbow...especially one handed back hands, they are setting themselves up for not being able to pick up a glass of water. Don't ask me how I know. If a person has injured hearing through too much sound exposure or bad genetics...then subjecting themselves to a normal range of sound intrusion may damage the hearing apparatus more readily. As with tennis elbow, the way to recover is still activity, but a much lighter regiment. If you cast an arm the muscles will atrophy.

So, its at least plausible that injured hearing cannot endure the same sound level as a normal person. Complete sound isolation with H by contrast may cause one to fall down the back side of the mountain with even greater H sensitivity.
Or...not. A person's nervous system and/or sound apparatus failing inexplicably...which happens for example of neurological diseases....like MS. A small percentage of T with major H sensitivity may be a type even yet defined.

Wishing everybody on the forum a better year in 2017. I contracted T and H in 2016 so I am hoping 2017 isn't at least worse.

 

[stophiss]

I'm slowly on my way to death I think,everything drags me further and further down and I never know what's too much for me because my pain isn't instant,it comes on after the fact.
So let's say I drive my car down to the store with earplugs and muffs on,things sound quiet and not loud so I'm ok with it.
Then I return home,take off my hearing protection and everything's fine and then the pain sets in and my T gets louder and louder.
Then I watch to on low volume,it's ok not bothering me then I go to bed and the pain starts along with the louder and louder T.
It's like a setback after the sound has long passed and I slowly but surely get worse everytime to wear I literally can't function anymore.
I lay in bed all day and even the sounds in my home are too much,I can't wear earmuffs as my own voice puts way too much strain on my ears so I'm just doomed from every angle.

Also Libermann or whoever it was showed that synaptic degeneration can be exasperated by low levels of noise,it doesn't happen immediately but slowly but surely they continue to degenerate and I fear that's what's happening to me,all these non loud noises are just wearing them away and there's nothing I can do about it.

Bill, I read your posts with great empathy. How to proceed? I have no idea what your overall health is and it seems like you are on a downward spiral of despair and isolation. We are all scared of our condition but perhaps you have reason to be. If I was in your shoes of not coping I would try to implement change. That may involve drugs. Hell it may even involve hallucinagins to help neuroplasticity along a bit....I am serious. I am an exercise gunkie. I rode 30 miles on the bike hard today and then swam for 1/2 hour before heading off to a family Christmas gathering. To me you need to find a reason to live and passion for life to pull yourself out. I understand about ear pain but I believe you have it at a greater level than I do. I will say this. There is momentum to this insidious disorder both good and bad. I have been on an uptick lately with reprieve from ear pain. It could come back tomorrow. My T is like a god damn yoyo but my H generally is steady from mild to moderate. Nobody has to cover their ears when the fire truck goes by but me....and probably others here.

I wish you the strength to try everything to turn your health around and get relief brother.

 

[bill 112]

Bill, I read your posts with great empathy. How to proceed? I have no idea what your overall health is and it seems like you are on a downward spiral of despair and isolation. We are all scared of our condition but perhaps you have reason to be. If I was in your shoes of not coping I would try to implement change. That may involve drugs. Hell it may even involve hallucinagins to help neuroplasticity along a bit....I am serious. I am an exercise gunkie. I rode 30 miles on the bike hard today and then swam for 1/2 hour before heading off to a family Christmas gathering. To me you need to find a reason to live and passion for life to pull yourself out. I understand about ear pain but I believe you have it at a greater level than I do. I will say this. There is momentum to this insidious disorder both good and bad. I have been on an uptick lately with reprieve from ear pain. It could come back tomorrow. My T is like a god damn yoyo but my H generally is steady from mild to moderate. Nobody has to cover their ears when the fire truck goes by but me....and probably others here.

I wish you the strength to try everything to turn your health around and get relief brother.

Since the start of the year I've just progressed downward,I was hoping I would improve and at times I did,I would feel better and go for a walk and by the time I got home I was in pain.Then there's all the little tiny noises that you don't think can worsen you but they do!
I haven't pushed myself to stupid places this year at all and anywhere I did gonI wore full Peltor earmuffs and took them off in a quiet places.It just seems no matter what I do I get worse,it was that or sit in my room all day everyday until I died but who the hell can do that?You need to get out and about and do things everyday to gelp you cope but these things are slowly killing me it seems.
I honestly don't know what to do anymore,screwed if you do and screwed if you don't.I'm just sitting here smoking weed everyday something I've never done in my life just to keep me relaxed and somewhat functioning until I either die or they fix this crap.

 

[stophiss]

Since the start of the year I've just progressed downward,I was hoping I would improve and at times I did,I would feel better and go for a walk and by the time I got home I was in pain.Then there's all the little tiny noises that you don't think can worsen you but they do!
I haven't pushed myself to stupid places this year at all and anywhere I did gonI wore full Peltor earmuffs and took them off in a quiet places.It just seems no matter what I do I get worse,it was that or sit in my room all day everyday until I died but who the hell can do that?You need to get out and about and do things everyday to gelp you cope but these things are slowly killing me it seems.
I honestly don't know what to do anymore,screwed if you do and screwed if you don't.I'm just sitting here smoking weed everyday something I've never done in my life just to keep me relaxed and somewhat functioning until I either die or they fix this crap.

I get it. In spite of your pain, you articulate it well. Nobody here has answers. But what I implore you do is somehow turn around your isolation and feeling of hopeless with an activity you enjoy that will distract you from what's going on. I believe anxiety is in the mix of what ails you and all of us. I hope you find strength Bill to try a mix of options and perhaps even map what to try to desensitize you to sound you find so overwhelming.

Hoping you feel better in the new year.

 

[japongus]

Jastrebroffs TRT has somewhat scientific evidence on its side and that's why it's overly accepted as the go to treatment simply because there's no other scientific evidence to oppose it.

That of course was the case until recently,when they discovered synaptopathy and auditory noiception,according to Jastrebroff there's no pain fibres in the ear,how the hell is he going to explain that one when it gets confirmed and thrown right out in front of him?His whole theory will collapse on itself as a result.

But Jastreboff, who I suspect is on the autistic spectrum, also thinks there's nothing in the middle ear. And yet Sismanis went in without objective tests, while Jastrebluff wrote a book talking about objective tests in the middle ear to disprove issues there, while basing himself on the most basic knowledge any ENT has, not on years of controversial research about it. Jastreboff is like a Kardashian, but of otology.

 

[japongus]

Here is one of our biggest issues. They all tell us this with certainty that normal sound can't hurt us further, and yet all the while, they don't know. They don't even know what the mechanism of damage truly is, and yet they dish out confidant advice based on.....on...rainbows and unicorns. Some of us won't be hurt any further by normal sound exposure, then there's Bill and I'm sure others.

Of course they don't know. All we have are a dozen or so papers with hypotheses on the middle ear, on things like tonic contraction and what it can do, or whether movements of muscles in there are actual or perceived. Everywhere you go in otology there's disagreement, I'm convinced sound therapists just took advantage of the power vacuum in hyperacusis to preach their nonsense.

 

[japongus]

Jastreboff trained clinicians would call this either a setback or, if it is unresponsive to TRT or broadband noise therapy, misophonia. Low LDL scores are now considered misophonia if LDLs do not improve with TRT; I'm not joking.

To me it seems like a cop out, especially the latter outcome. A convenient way to avoid having lower success rates. If it isn't hyperacusis causing the problem, it cannot count as a TRT failure, right?

Jastreboff told Jason DiEmilio that his severe ear pain couldn't possibly have been caused by noise. When TRT didn't work for him, they gave him a new condition that cannot be treated with TRT, and success rates remained unaffected.

Later we learned that according to Nagler, Jastreboff was not even aware of DiEmilio's suicide, despite DiEmilio's family contacting him about it.

Pfff... outstanding.

Moving the goal posts, just like Rob the crapmin over at chat-h. ''Oh so it didn't work huh, well it ain't hyperacusis''. ''Oh, so I said it was hyperacusis in another forum, well whatever you need to leave the house''. ''Oh I'm offended you told me I have a sensibility to coffee, not true hyperacusis''. ''Ima so triggered! Ban-hammer it is!''

 

[lymebite]

All we have are a dozen or so papers with hypotheses on the middle ear

Of course nobody has the answers, @japongus has researched this extensively to the ends of the earth and I expect knows more than just about anyone else, though @bill 112 gives him an awfully good run for his money and if Stephen is honest he may disagree with me that @japongus is a bit in the lead.

But be all that as it may, some ENTs have somewhat more interest than others. I noticed that Roya Azadarmaki has opened a new private practice in Virginia, USA. For anyone in the Middle Atlantic, USA region, she has done some research work on myoclonus (link to one paper below). It is not often that clinicians also do research. Dr. Azadarmaki both sees patients and does research.

http://www.journalrepository.org/media/journals/BJMMR_12/2014/Mar/Pollak4172014BJMMR9181_1.pdf

http://www.washingtonearassociates.com/

 

[Amber]

I'm just sitting here smoking weed everyday something I've never done in my life just to keep me relaxed and somewhat functioning until I either die or they fix this crap.

Please be careful... I've read weed can make T + H worse. Maybe you are causing this problem for yourself?

 

[PaulBe]

It is not often that clinicians also do research.

Yes. I find this extraordinary.

 

[glynis]

Hi @bill 112,
I wish you had a tinnitus group to go to for face to face support.
This would help you get out and mix with people and support you emotionally too .
Don't give up as there is a way forwards for you and baby steps and maybe setbacks but slowly making progress.
Your ears sound supper sensitive and it's getting use to everyday sounds and your own voice and more sounds around you and our door sounds.
Try set tittle goals and at your own pace try to achieve them and we can support you too.
Go back to basics and start over with sounds your ok with and build it up and the state your in will start to get easier .... keep posting Bill 12 and let's all get you back to your happy self and you will get their in your own time...lots of love glynis

 

[bill 112]

Hi @bill 112,
I wish you had a tinnitus group to go to for face to face support.
This would help you get out and mix with people and support you emotionally too .
Don't give up as there is a way forwards for you and baby steps and maybe setbacks but slowly making progress.
Your ears sound supper sensitive and it's getting use to everyday sounds and your own voice and more sounds around you and our door sounds.
Try set tittle goals and at your own pace try to achieve them and we can support you too.
Go back to basics and start over with sounds your ok with and build it up and the state your in will start to get easier .... keep posting Bill 12 and let's all get you back to your happy self and you will get their in your own time...lots of love glynis

Thanks Glynis,sadly there are no support groups near me for H and even if there were I don't think my ears could handle the stress of it all.
I tried playing the Xbox again today on super low volume but the change of pitches and such just kill my ears and head,it's very painful to sit there playing a simple game for too long.

I walk up to my grandmothers everyday for tea and then return home and stare at my wall or try to watch some tv,the sad and hardest part I find is convincing my family that what I have is real!!
They all think I'm depressed and that's why I'm like this but the truth is I'm depressed because I'm like this,a simple thing that they just can't understand for some reason.

Like today I was telling my grandmother about certain treatments and my aunty just tells me to ignore all that rubbish and"quackery"as she calls it,makes me laugh how a secondary school teacher has the nerve to call professors at Stanford and Harvord quacks,the ignorance is beyond all belief!
Because she's a teacher everyone listens to her and my voice is ignored,she often convinces my family that I know nothing about this condition when in fact the total opposite is true.
They can't fathom the things I tell them,they can't fathom the truth and they just think it will all get better if I go back to work etc,I tried that and it didn't end too good.

They can't fathom that the patient knows more than the doctor in regards to T and H and think I'm playing the expert,that I should listen to him because he's the expert,the same expert who had to google what H was when I arrived in his office.

Either way I just keep on trucking,I'll find my relief whether it be Round window reinforcement or otherwise,my girlfriend is 100% supportive and the only one who"gets it"if you know what I mean.

Family convince you your just going crazy at times.

 

[glynis]

Great to hear your girlfriend is a great support and I totally understand trying get family and friends to understand.

Point them in the direction of this forum and get them to read the posts...
Go at your own pace and no pressure on yourself and you will get through this over time.
Remember don't stop being around troublesome sounds as become a phobia just build up time around them at your own pace with what you are comfortable with...lots of love glynis

 

[PaulBe]

They all think I'm depressed and that's why I'm like this but the truth is I'm depressed because I'm like this,a simple thing that they just can't understand for some reason.

I'm with you there. You wonder how they get it so arse-about, but they just do.

 

[bill 112]

I'm with you there. You wonder how they get it so arse-about, but they just do.

I think it's a result of simply not comprehending that such a condition can exist,a condition that they can't understand so they try to associate it with something they do which happens to be depression which you just so happen to have as a result of the condition.

They can see your depression and assume the symptoms your experiencing are a result of the depression,but what they just can't grasp is that your depression is a result of your symptoms.Cant understand how they just can't grasp that.

 

[stophiss]

I think it's a result of simply not comprehending that such a condition can exist,a condition that they can't understand so they try to associate it with something they do which happens to be depression which you just so happen to have as a result of the condition.

They can see your depression and assume the symptoms your experiencing are a result of the depression,but what they just can't grasp is that your depression is a result of your symptoms.Cant understand how they just can't grasp that.

Certainly that...and they have nothing to offer in terms of a cure if they accept a given condition outside of what they know....and/or they are just plain stupid as too many people are.

Keep in mind, forgive the pun, there are contrary views of consciousness as well...what is it?, where does it come from?...why do people have an inner voice?...is consciousness shared or uniquely individual. Tinnitus hasn't been solved because brain function is still not understood.

 

[Canador]

They can't fathom the things I tell them,they can't fathom the truth and they just think it will all get better if I go back to work etc,...

Try not to blame them.

If I step back and look objectively at the affliction, I can't fathom it either.

 

[Canador]

Then what about Charles Libermann and his theory of synaptic damage and noiception being the cause to tinnitus and Hyperacusis to which there is currently more evidence for especially when compared to the Jastrebroff model?

Bill,

Liberman's study is one of the most enlightening I've seen, and it deserves full attention. If correct, everyone needs to be much more careful with sound.

However, hyperacusis that gets worse from every little sound may not necessarily be caused *solely* from severely damaged nerves.

Your current situation is similar to some others who eventually recovered from hyperacusis. If their continual worsening (as you are experiencing) was due to a severe and irretrievable downward spiral of permanent nerve damage (which they also thought at the time), then how was it possible for them to improve so greatly?

 

[bill 112]

Bill,

Liberman's study is one of the most enlightening I've seen, and it deserves full attention. If correct, everyone needs to be much more careful with sound.

However, hyperacusis that gets worse from every little sound may not necessarily be caused *solely* from severely damaged nerves.

Your current situation is similar to some others who eventually recovered from hyperacusis. If their continual worsening (as you are experiencing) was due to a severe and irretrievable downward spiral of permanent nerve damage (which they also thought at the time), then how was it possible for them to improve so greatly?

Libermanns theory by far and away makes the most sense to me especially considering my current situation.

I got H in 2014 and recovered about 90%,I started getting around much more noise and slowly it worsened before completely going haywire in January this year along with my T.

I sat there confused as to why I had gotton worse,I was desensitised so noise shouldn't be a problem?So why was I getting worse with more noise?

That's when I came across Libermanns work and how it just made sense in the grand scheme of things,as for this year I feel I'm getting worse from little noises like people laughing too loudly or things dropping on the floor or even just getting out and about!I don't know but I feel that these nerves are just getting more and more damaged from these little sounds,like they all add up and then bang things get worse.How I noticed is that my T got louder and that I began lowering and lowering the volume on my tv as I can't tolerate the volume I could at the beginning of the year.

 

[bill 112]

This is why I would love to take part in the new hidden hearing loss test that they're rolling out,to see what the hell is actually going on in there.

 

[Canador]

How I noticed is that my T got louder and that I began lowering and lowering the volume on my tv as I can't tolerate the volume I could at the beginning of the year.

Are external sounds only getting more irritating and painful? Or is everything sounding continually louder as well?

 

[SilverSpiral]

There is nothing holy about T and related hearing conditions. That is why there is no Holy Grail. Let's find cures not Holy Grails.

 

[bill 112]

Are external sounds only getting more irritating and painful? Or is everything sounding continually louder as well?

Getting more irritating and painful,not sure about louder but just intolerable.

 

[stophiss]

There is nothing holy about T and related hearing conditions. That is why there is no Holy Grail. Let's find cures not Holy Grails.

Ummm...you are being semantical. In other words, you are making a distinction without a difference. Holy Grail is another word for definitive truth. Connotation of the word holy as a spiritual reference misses the point.
A cure can be the holy grail for example. A cure can be the definitive truth. TRT as discussed in this thread isn't a cure and as many attest, isn't a holy grail either and the purpose of the thread is to discuss why TRT both isn't a cure or a holy grail for many which I believe does a good job discussing it.

Of course we need a cure. I am convinced one will come in spite of what I consider rubbish about, a cure can't come because tinnitus can't be defined or T is too heterogeneous etc. To me, this is BS. There will become therapies and likely even smart drugs developed that will improve it. They may even come in the next 5 years. They will be the new holy grail. Then 10-15 years later, another break through will come along. This will be the new holy grail.
If you want a start a thread on why there hasn't been a cure for tinnitus have at it. Right now there is no cure and all we have are a best therapy aka holy grail. Even though some don't believe it here who are ardently against TRT because it didn't work for them or TRT doesn't comport with their belief about what causes tinnitus or H, the reality is, TRT has helped some. This is fact and been reported. It can even be placebo FWIW. Almost doesn't matter if you subscribe to notion that tinnitus is a brain disorder. Believing in something can manifest a change in brain chemistry...just like love or religion can.

 

[SilverSpiral]

Ummm...you are being semantical. In other words, you are making a distinction without a difference. Holy Grail is another word for definitive truth. Connotation of the word holy as a spiritual reference misses the point.
A cure can be the holy grail for example. A cure can be the definitive truth. TRT as discussed in this thread isn't a cure and as many attest, isn't a holy grail either and the purpose of the thread is to discuss why TRT both isn't a cure or a holy grail for many which I believe does a good job discussing it.

Of course we need a cure. I am convinced one will come in spite of what I consider rubbish about, a cure can't come because tinnitus can't be defined or T is too heterogeneous etc. To me, this is BS. There will become therapies and likely even smart drugs developed that will improve it. They may even come in the next 5 years. They will be the new holy grail. Then 10-15 years later, another break through will come along. This will be the new holy grail.
If you want a start a thread on why there hasn't been a cure for tinnitus have at it. Right now there is no cure and all we have are a best therapy aka holy grail. Even though some don't believe it here who are ardently against TRT because it didn't work for them or TRT doesn't comport with their belief about what causes tinnitus or H, the reality is, TRT has helped some. This is fact and been reported. It can even be placebo FWIW. Almost doesn't matter if you subscribe to notion that tinnitus is a brain disorder. Believing in something can manifest a change in brain chemistry...just like love or religion can.

Yeah I was just joking at the usage of the term "holy grail" in the title of the thread. Because the nature of Tinnitus and related hearing issues, and the lack of accurate mainstream diagnosis and treatment for them can both lead people to having existential crisis, and searching for alternative medicine techniques which may be comparable to "searching for the Holy Grail". Surely you've seen threads pop up of people treating their tinnitus through prayer. Or stuff like this http://www.irishtimes.com/news/health/my-life-was-a-war-against-noise-1.517024

 

[SilverSpiral]

TRT has it's place even if it is a largely or completely psychological treatment. However it's cost is a barrier to many, and the fact that it is not covered under public healthcare in many countries would seem to indicate that either it's efficacy has not been widely accepted by the medical field, or that tinnitus sufferers are horrendously mistreated by the healthcare system.

 

[Sen]

However it's cost is a barrier to many, and the fact that it is not covered under public healthcare in many countries would seem to indicate that either it's efficacy has not been widely accepted by the medical field, or that tinnitus sufferers are horrendously mistreated by the healthcare system.

A well revered neurotologist I saw once referred to TRT as "voodoo."

 

[stophiss]

A well revered neurotologist I saw once referred to TRT as "voodoo."

Because one revered neurotologist says so, it much be true. I wonder why voodoo has such a following?
It couldn't be what people believe doesn't matter...lol.

 

[stophiss]

TRT has it's place even if it is a largely or completely psychological treatment.

This^^^ and it doesn't work for everybody as discussed.