Tinnitus and TINNITUS

[Dr. Nagler]

So where does the good doc get off telling me that heretohelp is offering me his expert advice then?
If this is correct then you have been dishonest with me @Dr. Nagler just for the sake of your argument!(oh shit there's that exclamation point again).

Rich, I will stand by my statement regarding @here2help's level of knowledge and expertise.

But here's the thing: Nobody is forcing anything down your throat. There's no gun to your head here. You asked for my opinion regarding your situation. I gave it to you. @here2help offered his thoughts as well.

I wish you well, I really do. But my efforts to address your concerns have accomplished nothing save for making me sad. So I am going to back away here and simply wish you the very best.

Dr. Stephen Nagler

 

[RichL]

Rich, I will stand by my statement regarding @here2help's level of knowledge and expertise.

If here2help is just another Tinnitus sufferer, then his expertise is no greater or lesser than my own.

But here's the thing: Nobody is forcing anything down your throat. There's no gun to your head here. You asked for my opinion regarding your situation. I gave it to you. @here2help offered his thoughts as well.

Thank you your opinion's are noted.

I wish you well, I really do. But my efforts to address your concerns have accomplished nothing save for making me sad. So I am going to back away here and simply wish you the very best.

If by having a discussion and not both of us agreeing makes you sad then that is very sad for you and I wish you all the best.
Your efforts in actually listening to someone leaves me feeling as though I have failed in relaying them to you and that makes me sad!

Rich

 

[Dr. Nagler]

If by having a discussion and not both of us agreeing makes you sad then that is very sad for you and I wish you all the best.

I'm not sad because we disagree.

Dr. Stephen Nagler

 

[Tenna]

I think if you removed everyone off this board that had it "very soft" sounding as you say, like maybe only hearing it in a quiet room, you would have about 90% less people on this webboard.

That statistic though..
Most here will agree with you, because everybody thinks they're a unique snowflake ungoing more suffering than everybody else, in the exact same situation.

...If Dr.Nagler has a medical degree at least, here2help is really just a dude with tinnitus.

Like 99% of us*

 

[Michael2013]

Please stop sucking up to Dr. Nagler already, you've done it here and on Yuku, its really annoying.

lol! Sorry Danno, you must have me confused with someone else because anybody who has followed my posts would find I disagree with him more often than not. My last interaction with him on Yuku was a disagreement.

It just so happens that in this case, he is right. Claiming to be "direct and blunt" has now become a excuse to be rude around here it seems. Sorry, but if you post with many words capitalized and end every sentence with !! Then it reads very differently than without. I was just trying to offer that perspective because I do think rich may not have realized how his posts might have been coming across.

Mike

 

[Michael2013]

I don't know who here2help is but it's easy to see he is actually trying to help. Why all the hostility??

 

[MattK]

@here2help I know you mean well. But I think it's a huge mistake to essentially say all tinnitus is the same. If someone like @Telis only heard his tinnitus in quiet rooms, then he'd be much better off. With that said, I think most of your advice is good. The problem is when you say something that is wrong, it serves as a red-herring and now ni one wants to hear the good you have to say.

@dan you had a DIY TRT thread up which made you appear to be an expert. So what are your medical degrees?

@RichL just because he doesn't have formal medical training doesn't mean he isn't highly knowledgeable. It says quite a bit when someone with legit medical training vouches for him. Also your buddy Dan I'll admit seems to know quite a bit about TRT and even created a thread for DIY TRT. So if he has no medical degree of any kind, wouldn't you say he had no right to do so?

To be fair, degree or not, Dan does seem to know a lot about TRT. More than most people here. So let's not pretend that we're all equally knowledgeable unless we get a degree.

Other than one thing here2help said, he's given you good advice. I've never seen anyone get so angry at someone who is reaching out and trying to help.

 

[Kathi]

@here2help helped me so much when I was a few months in, as did @Dr. Nagler and others on this board. I really can't understand the hostility. They are trying to help-- so if you do not agree just say so and move on. There is no need to belittle them or any poster here. We all have tinnitus. We are all trying our hardest to overcome it and go on with our lives. I do understand that my moderate T may not equal that of a severe T sufferer but anything that benefits someone whose suffering you deem as less than yours, may help you too if you keep an open mind.

 

[dan]

@MattK , I am an amateur at best, I never said I was a trained in tinnitus treatment and no authoritative figure has ever vouched for me.
You will find that I am open to debate. I simply regurgitate what I read from trt/tinnitus literature.
What I post is purely from personal opinion and my own observations. I don't agree with everything I read neither...for example the Heller Bergman studies...
Yeah I can give advice but I don't try to play psychologist/cbt with people.
Now I suggest we all tone it down, we all raised our concerns and stated our points of view, no need for animosity. Lets stick to the facts here.

 

[dan]

and oh yes - my thread was DIY trt - by definition that is non-professional in of itself i.e."do it yourself".
Its like you can build a house DIY, but will it be up to all specifications?
In that thread I also urged people to seek good audiologists because imo it is not possible to do updated trt completely on your own, one still needs some technical support, etc. Those new fancy maskers connect to computer software where the masking level can be precisely set and also one might need hearing aids.
Its pretty complex stuff.

 

[here2help]

@MattK, I appreciate your post in the other thread but you incorrectly inferred that I believe all tinnitus is the same. I haven't said all tinnitus is the same. What I said, and will be glad to say again, is that when people with tinnitus rate their tinnitus as severe, the characteristics of their tinnitus can be loud, soft, continuous, discontinuous, predictable, unpredictable, high-pitched, low-pitched, a single tone, several sounds at once, exacerbated by sound, or not. I'm not disputing that if a person's tinnitus was less loud or the person could only hear tinnitus in a quiet room that person wouldn't be much better off. Of course he would! But how is it helpful to think in those terms, which are the terms a child approaches an adult problem, if the reality is that person hears tinnitus in loud rooms?

When tinnitus patients rate the severity of their own tinnitus, those with very loud tinnitus suffer from it, but those with soft tinnitus suffer from it too. The same is true of tinnitus pitch. When tinnitus patients rate the severity of their tinnitus, people with high-pitched tinnitus suffer from it, but people with lower pitched tinnitus suffer from it too. The same is true for the number of sounds. When tinnitus patients rate the severity of their own tinnitus, people whose tinnitus consists of several sounds suffer from it, but people whose tinnitus consists of one sound suffer from it too. The same is true for whether tinnitus is continuous or discontinuous. When tinnitus patients rate the severity of their tinnitus, those with tinnitus that rings 24/7 suffer from it, but those whose tinnitus comes and goes suffer from it too. When you take a look at what severe tinnitus is, according to the self-report of a thousand tinnitus sufferers, severe tinnitus is all over the place – soft, loud, high, low, you name it.

I think tinnitus is inimitable, but that people suffer from tinnitus regardless of its particular characteristics.

here2help

 

[Zimichael]

Some confusion here may be understandable. A very knowledgeable person on this forum once claimed that Dr. Nagler and here2help are one and the same person posting under different names.
But what do I know?!

 

[MattK]

@dan but people were coming to you, asking you what they should do for DIY trt. That sets you up at the person of knowledge. And, I wouldn't have a problem with that, because from my point of view, you do seem to know quite a bit. My issue wasn't with that at all; my issue is when you start saying someone like @here2help essentially has no business saying what he says because he's not an "expert" due to lack of medical training. Perhaps he is just regurgitating what he read, what qualified experts told him, and drawing from years of experience with his own condition and with the condition of others?

I'll admit that here2help made a huge blunder in making it sound like the volume of tinnitus has no role in our level of suffering. [And I was just informed that he didn't say this, but perhaps what he said could be interpreted that way] That seems to defy common sense. But other than that, I think the rest of his advice was good.

 

[MattK]

@here2help thanks for the clarification. I guess the wording from that post that @Telis keeps quoting was just a little confusing.

But I agree with you as a whole. If we keep thinking our tinnitus is the worst thing imaginable, then of course we can't habituate to that.

 

[Dr. Nagler]

Some confusion here may be understandable. A very knowledgeable person on this forum once claimed that Dr. Nagler and here2help are one and the same person posting under different names.

I heard that too.

@here2help and I are most definitely not the same person. Of course there is no way to prove a negative, but I will swear to it on my daughter's eyes if it will make a difference.

The reason that there is "some confusion here" is because somebody wanted there to be some confusion here.

I am going to back off and post only in response to selected questions that are posed to me directly either on the Support forum or on the Doctors' Corner - but I felt this particular issue deserved some attention.

stephen nagler

 

[dan]

@MattK I agree with that, everybody can give advice and here2help has been around longer than I have. But having said that, if he's really here to help, perhaps he should be less condescending(?) and confrontational when dealing with those who suffer most, for example using phrases like "fetishizing", I mean come on man, the last thing somebody who suffers badly needs to hear is that he is fetishizing the loudness of his tinnitus. Don't you think?
Well I believe that we have explored this issue to its maximum and made our conclusions.

 

[bwspot]

I do not believe that you can train your mind to ignore tinnitus. But you most certainly can train your mind not to react to it.

Dr. Stephen Nagler

Can changing the reaction to t actually turn it off so it's not hearable or it's always there but does not bug the sufferer?

 

[Dr. Nagler]

Can changing the reaction to t actually turn it off so it's not hearable or it's always there but does not bug the sufferer?

If you do not react to your tinnitus, it cannot "bug" you - because bugging you is a reaction. As a natural consequence of not reacting to your tinnitus, you tend to become less and less aware of it unless you purposely seek it. But if you do purposely seek it, your tinnitus will always be there.

stephen nagler

 

[Martin69]

I wanted to post this in the "To RichL" thread. But this seems gone.

Interesting discussion here. IMHO:

The fact is that there is mild tinnitus and damn loud, high-pitched tinnitus, jet engine T, pulsatile T, ear pain, H and so on. And unfortunately the only thing we have is not reacting to it. And not reacting to a mild T (which is covered by environmental sounds) is in my opinion easier than to a buzzing head you can even hear in the shower. And of course there are mild cases where people truely suffer and intrusive cases where people don't care. But I am sure, the mild cases habituate sooner or later. The really bad T cases maybe habituate, maybe not. But it is difficult living a life with loud T and not reacting to it.

So any advice given here is highly appreciated. And people here like @here2help and @Dr. Nagler really try to help. We are all frustrated to some extent since we want to get rid of our intrusive T. But what choice do we have?

 

[Martin69]

If you do not react to your tinnitus, it cannot "bug" you - because bugging you is a reaction. As a natural consequence of not reacting to your tinnitus, you tend to become less and less aware of it unless you purposely seek it. But if you do purposely seek it, your tinnitus will always be there.

stephen nagler

But this takes some time, long time probably, right?

 

[dan]

@Zimichael , they are not the same person.

The fact is that there is mild tinnitus and damn loud, high-pitched tinnitus, jet engine T, pulsatile T, ear pain, H and so on. And unfortunately the only thing we have is not reacting to it. And not reacting to a mild T (which is covered by environmental sounds) is in my opinion easier than to a buzzing head you can even hear in the shower. And of course there are mild cases where people truely suffer and intrusive cases where people don't care. But I am sure, the mild cases habituate sooner or later. The really bad T cases maybe habituate, maybe not. But it is difficult living a life with loud T and not reacting to it.

That's what I've been trying to say for the past 3 years.

 

[Dr. Nagler]

But this takes some time, long time probably, right?

Excellent question. The answer is that it varies. For some it takes a long time; for some it happens rather quickly. Last week I saw a follow-up patient with extremely loud screaming tinnitus due to severe ototoxicity from platinum-based chemotherapy. He no longer reacted to his tinnitus and was now aware of it less than 10% of his waking hours (unless he purposely listened for it). By his own report, his tinnitus had not changed at all. Same high-pitched loud scream he had at the time of his first visit. I discharged him from my care with instructions to call me if he ever had further trouble. The whole thing took four months. So there is, indeed, considerable individual variability.

stephen nagler

 

[Zimichael]

Could @here2help please say where you are from; how long or if you have had tinnitus (it is not in your Profile); and why you are indeed an "expert" and how this expertise was gained. That may help to shed some light on this discussion and the relevance of advice offered.

Thank you... Zimichael

 

[MichaelM]

Last week I saw a follow-up patient with extremely loud screaming tinnitus

May i ask how this T was measured?

 

[Dr. Nagler]

@MichaelM asked:

Good day, may i ask how his T was measured?

.............

Well, we always do a tinnitus pitch and loudness match for counseling purposes - but in reality the only loudness that matters is the loudness rating. And he rated his a 9 out of 10.

stephen nagler

 

[Martin69]

Excellent question. The answer is that it varies. For some it takes a long time; for some it happens rather quickly. Last week I saw a follow-up patient with extremely loud screaming tinnitus due to severe ototoxicity from platinum-based chemotherapy. He no longer reacted to his tinnitus and was now aware of it less than 10% of his waking hours (unless he purposely listened for it). By his own report, his tinnitus had not changed at all. Same high-pitched loud scream he had at the time of his first visit. I discharged him from my care with instructions to call me if he ever had further trouble. The whole thing took four months. So there is, indeed, considerable individual variability.

stephen nagler

Wow. Amazing.

 

[Dr. Nagler]

Could @here2help please say where you are from; how long or if you have had tinnitus (it is not in your Profile); and why you are indeed an "expert" and how this expertise was gained. That may help to shed some light on this discussion and the relevance of advice offered.

@here2help never claimed to be an expert. Indeed, I doubt very much that he views himself in that light. I am the person who referred to him as an expert. And I will stand by that statement.

stephen nagler

 

[Sen]

Well, we always do a tinnitus pitch and loudness match for counseling purposes

And what were the results?

 

[Dr. Nagler]

And what were the results [of the tinnitus loudness match]?

I do not recall offhand. It was four months ago, and the chart is in my office.

But again I really want to stress that the only important loudness measurement is how loud your tinnitus sounds to you. And that is the tinnitus loudness rating (on a 1 to 10 scale), not the tinnitus loudness match.

The loudness match (in dB SL) is used clinically for only two purposes that I can think of. One is in counseling to lend some concreteness (like on a chart) to what would otherwise be a totally amorphous tormenter. And the other is in the courts - where it has been well-established that a malingerer cannot replicate his or her pitch and loudness match in three consecutive attempts spaced 30 minutes apart. So an expert witness can run the studies in his or her office and if needed attest within a reasonable degree of certainty as to whether or not a plaintiff is malingering. I personally do not ever get involved in that sort of thing.

stephen nagler

 

[RichL]

@RichL just because he doesn't have formal medical training doesn't mean he isn't highly knowledgeable.

Doesn't make someone an expert.

It says quite a bit when someone with legit medical training vouches for him.

Depends on the reason why that someone with legit medical training has vouched for him, is it because he is a close friend who just so happens to conform to that said medical experts ideas and beliefs? or..?????

Also your buddy Dan I'll admit seems to know quite a bit about TRT and even created a thread for DIY TRT. So if he has no medical degree of any kind, wouldn't you say he had no right to do so?

My buddy?, that's a little condescending of you!
I don't believe that he ever claimed to be an expert on it or claimed to have a medical degree.

Other than one thing here2help said, he's given you good advice. I've never seen anyone get so angry at someone who is reaching out and trying to help.

The advice he gave for me is no good for my personal position at the moment and I never did ask for his advice in the first place.
Honestly why you think I was angry is beyond me. I am blunt and straight to the point in everything I do, I call a spade a spade and where it has made me allot of close friends it has also made me a few enemy's. Unfortunately it comes with the territory, most people can't handle hearing it the way it is, but that's life and I would rather be loved by real people than pretenders! (sorry for the proper use of the exclamation point, please don't take it the wrong way).

Regards Rich.