so is there an upper limit of loudness to how effective TRT can be? if tinnitus went up a notch in loudness every few years surely at some point it would become intolerable?
How Long Before Habituation of Perception Kicks In?
- Thread starter Lisa123
- Start date
Member
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
can a danik confirm that offer was genuine or he just said it was said and nothing was done, was the offer genuine i wonder
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
really, i did not know that, is there online article that proof one can habituate in 1,5 month?
i am sorry, but and became very untrusty toward any doctor after what they did to me...
what a doctors do is just make new patients, and if you hit a lottery they help you heal
MemberSunday is a working day for me. However, I've got 20 minutes or so to briefly describe my journey to habituation of perception. Please note that this is once again a stand alone post. I also haven't bothered to read through what has been added to this thread since the two contributions I made yesterday. I don't have time. If anything I am about to write encourages anyone, that's great. If people have doubts about anything I've written, that's great too. Intelligent scepticism is something I would want to encourage anyway. It's only having a closed mind, a mind that is therefore full of itself, that I would see as problematic.
You will be able to find more detail on the TSMB regarding my back story.
I first noticed that I had loud, intrusive tinnitus about eight years ago. I can remember exactly what I was doing (listening to an Echo and the Bunnymen song) but not exactly when it was. Anyway, as a result of this, I started reading the tinnitus forums, one of which was the Tinnitus Support Message Board. Typically, the online community back then consisted of members who were tinnitus veterans and well-habituated, and other short and long-term sufferers who were not.
The longest and most ferociously contested threads tended to be those devoted to the discussion of TRT. Disputes tended to focus on the efficacy of this approach, and over the extent to which loudness was a factor in habituation. I decided that - in the absence of a cure - I would go with the members who wrote about habituation. Pragmatically, I saw them as offering hope. But I was scared that I might be someone who would not achieve this state, as I was in a complete mess and suicidal with this malady.
One of the loudest and most optimistic voices back then was Dr Nagler. About six months into tinnitus hell, I actually got to meet him in London. He was on vacation but - from memory - reached out to me. It was definitely on his initiative that we met. Maybe he noticed that I was based in London and sent me a PM.
We met in the reception of his hotel in Maida Vale and had breakfast together. The thing that most sticks in my mind was what I saw when I first encountered him. Unusually for a busy hotel over the Christmas period, the reception area was almost silent. Dr Nagler was sat there absorbed in a book on how violins are made. I was left wondering how the guy could focus on anything with tinnitus that he had previously described as 'thunderous'. Of course, now I know better. Yesterday, I spent a couple of hours finishing Alom Shaha's excellent The Young Atheist's Handbook in the relative silence of my living room. I'm actually an old agnostic, but anyway, Shaha's writing, for my money, is far superior to anything composed by the usual New Atheist suspects (Dawkins, the execrable Sam Harris, Hitchens, Dennett and A.C. Grayling).
However, that's another story. Let's get back to this one. Through my meeting with Dr Nagler, I became even more convinced that the logic of habituation made sense: kill off the emotional reaction to tinnitus and one should become less aware of it. It is also very much worth noting that Dr Nagler gave up his time for free. I haven't spent much time around this forum, but enough to know that those who would seek to impugn his reputation are well wide of the mark.
Round about this time I also did TRT with Jacqui Sheldrake in London. Unfortunately, as I have hearing loss, my experience with her was untypical. I was given bi-lateral hearing aids to wear rather than WNGS. I think the idea was that the increased input from outside sounds would compete more favourably with the tinnitus, and in the end facilitate habituation.
I also acquired Henry and Wilson's book on CBT and tinnitus, which is highly thought of. And read it. And none of it helped. Nothing. I kept quiet about it, as I was also getting valuable counselling from Robx2, another stalwart of the TSMB. But I was certainly bottom of the class when it came to internalizing the message of habituation. About 18 months further down the road and I was still getting derailed by spikes, weird changes in my tinnitus, and so on.
To reiterate, although the logic of habituation made sense, I just wasn't experiencing it in anything other than a temporary, fleeting sense.
Finally, I woke up one day and had what I can only describe as an existential realization: the tinnitus was screeching away as per usual, and I realized that I had a choice: I could invest in the usual psychodrama of despair, or I could choose another path in which tinnitus did not get to dictate the agenda. I chose the latter path. At around that time I had also started to practise Mindfulness Based Cognitive Therapy or MBCT. I think that helped to shave some edges off my profoundly aversive emotional reaction to tinnitus.I still do MBCT every day.
Fast forward to the present and things are much better. I certainly do not have suicidal ideations for a start. And even when tinnitus does, occasionally, bother me, I simply don't rise to the emotional bait.
So that's it. Looking back, I would say that the personal help I received from Dr Nagler, the online counselling I had from Robx2, TRT, CBT and particularly MBCT all contributed to the desired outcome. Even though I was an especially slow student, I got there in the end.
There's one last thing: going back to the cut and thrust of threads like this, a few months ago I was reading Phillip Zimbardo's book The Lucifer Effect. In one brief section of it, Zimbardo cites a couple of studies that indicate that people are far more aggressive to each other under conditions of anonymity. Cultures in which the men wear war paint when going into battle are inclined to be more vicious to their enemies. Children who wore masks at parties would be more physically hostile and truculent to other kids. This is something that I have certainly found myself doing online in my dealings with others. So it's something I think twice about now.
Anyway, I hope this post helps someone. That's my main reason for making it. And for anyone curious about Mindfulness, there are now lots of publications on that topic that can get you started, though my personal favourite is Pema Chodron's How to Meditate.
You will be able to find more detail on the TSMB regarding my back story.
I first noticed that I had loud, intrusive tinnitus about eight years ago. I can remember exactly what I was doing (listening to an Echo and the Bunnymen song) but not exactly when it was. Anyway, as a result of this, I started reading the tinnitus forums, one of which was the Tinnitus Support Message Board. Typically, the online community back then consisted of members who were tinnitus veterans and well-habituated, and other short and long-term sufferers who were not.
The longest and most ferociously contested threads tended to be those devoted to the discussion of TRT. Disputes tended to focus on the efficacy of this approach, and over the extent to which loudness was a factor in habituation. I decided that - in the absence of a cure - I would go with the members who wrote about habituation. Pragmatically, I saw them as offering hope. But I was scared that I might be someone who would not achieve this state, as I was in a complete mess and suicidal with this malady.
One of the loudest and most optimistic voices back then was Dr Nagler. About six months into tinnitus hell, I actually got to meet him in London. He was on vacation but - from memory - reached out to me. It was definitely on his initiative that we met. Maybe he noticed that I was based in London and sent me a PM.
We met in the reception of his hotel in Maida Vale and had breakfast together. The thing that most sticks in my mind was what I saw when I first encountered him. Unusually for a busy hotel over the Christmas period, the reception area was almost silent. Dr Nagler was sat there absorbed in a book on how violins are made. I was left wondering how the guy could focus on anything with tinnitus that he had previously described as 'thunderous'. Of course, now I know better. Yesterday, I spent a couple of hours finishing Alom Shaha's excellent The Young Atheist's Handbook in the relative silence of my living room. I'm actually an old agnostic, but anyway, Shaha's writing, for my money, is far superior to anything composed by the usual New Atheist suspects (Dawkins, the execrable Sam Harris, Hitchens, Dennett and A.C. Grayling).
However, that's another story. Let's get back to this one. Through my meeting with Dr Nagler, I became even more convinced that the logic of habituation made sense: kill off the emotional reaction to tinnitus and one should become less aware of it. It is also very much worth noting that Dr Nagler gave up his time for free. I haven't spent much time around this forum, but enough to know that those who would seek to impugn his reputation are well wide of the mark.
Round about this time I also did TRT with Jacqui Sheldrake in London. Unfortunately, as I have hearing loss, my experience with her was untypical. I was given bi-lateral hearing aids to wear rather than WNGS. I think the idea was that the increased input from outside sounds would compete more favourably with the tinnitus, and in the end facilitate habituation.
I also acquired Henry and Wilson's book on CBT and tinnitus, which is highly thought of. And read it. And none of it helped. Nothing. I kept quiet about it, as I was also getting valuable counselling from Robx2, another stalwart of the TSMB. But I was certainly bottom of the class when it came to internalizing the message of habituation. About 18 months further down the road and I was still getting derailed by spikes, weird changes in my tinnitus, and so on.
To reiterate, although the logic of habituation made sense, I just wasn't experiencing it in anything other than a temporary, fleeting sense.
Finally, I woke up one day and had what I can only describe as an existential realization: the tinnitus was screeching away as per usual, and I realized that I had a choice: I could invest in the usual psychodrama of despair, or I could choose another path in which tinnitus did not get to dictate the agenda. I chose the latter path. At around that time I had also started to practise Mindfulness Based Cognitive Therapy or MBCT. I think that helped to shave some edges off my profoundly aversive emotional reaction to tinnitus.I still do MBCT every day.
Fast forward to the present and things are much better. I certainly do not have suicidal ideations for a start. And even when tinnitus does, occasionally, bother me, I simply don't rise to the emotional bait.
So that's it. Looking back, I would say that the personal help I received from Dr Nagler, the online counselling I had from Robx2, TRT, CBT and particularly MBCT all contributed to the desired outcome. Even though I was an especially slow student, I got there in the end.
There's one last thing: going back to the cut and thrust of threads like this, a few months ago I was reading Phillip Zimbardo's book The Lucifer Effect. In one brief section of it, Zimbardo cites a couple of studies that indicate that people are far more aggressive to each other under conditions of anonymity. Cultures in which the men wear war paint when going into battle are inclined to be more vicious to their enemies. Children who wore masks at parties would be more physically hostile and truculent to other kids. This is something that I have certainly found myself doing online in my dealings with others. So it's something I think twice about now.
Anyway, I hope this post helps someone. That's my main reason for making it. And for anyone curious about Mindfulness, there are now lots of publications on that topic that can get you started, though my personal favourite is Pema Chodron's How to Meditate.
Christian,read Nager's posts carefully.
IF, I were to convince him my T was real.
IF, he were convinced I wasnt a bullshitter.
IF, he was satisfied with our proposed meeting.
ONLY THEN, would he tell him his 'secret intention' of treating me.
Now about his TRT friend in Newmarket.
Let me explain.
During this period, I called Dr.Nagler on the phone.
He answered - Dr.Nagler speaking.....
And so we talked for about half an hour. In the conversation he asked me which TRT clinics I have contacted so far. I said I contacted the one in Newmarket and one in Whitby (towns near Toronto).
I told Dr.Nagler that I have spoken on the phone to his TRT clinician in Newmarket with many years experience, but he told me that he recently retired and will no longer be treating T patients.
Dr.Nagler said he was not aware of that and that it was unfortunate for me.
Then I told him that I spoke with the Whitby clinic and that they were going to set up an appointment for me soon. Dr.Nalger at that point offered to expedite my appointment in case if needed, but they gave me an early appointment and so I did not need any help.
NOT AT ANY POINT DURING OUR PERSONAL CONVERSATION ON THE PHONE, DID DR.NAGLER OFFER ME ANY SORT OF HINT THAT HE MIGHT BE ABLE TO TREAT ME HIMSELF, NOR THAT HE WOULD PULL SOME STRINGS WITH ANY OTHER WELL KNOWN TRT CLINICIAN TO TREAT ME, I AM NOT EVEN TALKING ABOUT ANYTHING FOR FREE!!!!!!!!!!!!!!!!!!
OK PEOPLE???? WHAT I AM TELLING HERE I SWEAR ON MY TINNITUS, IS THE TRUTH.
THIS TELEPHONE CONVERSATION BETWEEN ME AND NAGLER TOOK PLACE BEFORE (or about) HIS OFFER TO MEET ME IN TORONTO for lunch.
I am only posting this because people keep raising questions about my decision, as to why did I so terribly refuse such a generous offer ......
I repeat there was NO offer N O - read NO OFFER....NADA, ZILCH, ZIPPO.
The offer was strictly to have a nice lunch and entertain Nagler's curiosity.
We have thousands of members here on the forum, was anybody here offered FREE TRT by Dr.Nagler?
I am very curious to know.
are you claiming that the good doctor is lying about what he offered you? are you sure there is no misunderstanding?
Look, even if there was no offer of free TRT, what has he done wrong?
Look, even if there was no offer of free TRT, what has he done wrong?
Look man, I hope you are intelligent enough to make your own conclusions Ok? I am not going to be baited into making direct personal attacks on here. I presented the facts as they are, if you need further clarification, I would be glad to help you understand.
Yes I am sure there is not misunderstanding here.
He was the one who brought up this subject on this forum and has manipulated some facts to make him look good and make me look like an ungrateful bastard, so its my duty to clarify and maintain my good image and standing as an honest member of this forum....other than that, nothing wrong.
I offered to fly to Toronto and spend a couple of hours over lunch with dan discussing his tinnitus as well as what he might possibly be able to do about it. I did not offer him free TRT. I did not mention TRT or anything about TRT when I told him I was willing to fly to Toronto to meet with him. And I never stated on this board or on any other board that I offered dan free TRT.
Dan was applying for disability at the time - so I figured he was likely pretty miserable and very desperate. But something did not seem right because of the incredible hostility he openly displayed in his TSMB postings, hostility not only to me but towards anybody who suggested he could get past his tinnitus and in time actually get back to work. I had even spoken with dan over the phone for an hour or so but still couldn't figure out what his deal was.
So before I was willing to commit my time, my resources, and my efforts to helping dan through TRT, I wanted to see him face-to-face and eye-to-eye. Cyberspace is wonderful - but cyberspace has its limits. It is basically a unidimsional representation of a three-dimensional reality. Moreover, as @Sleaford Mod notes the second-to-last paragraph of his post above, the anonymity of cyberspace emboldens people to act in ways they might not otherwise act.
My offer was to meet dan face-to-face to talk about his tinnitus and to answer any questions he might have regarding various treatment options. There was no mention of free TRT when I offered to meet with dan. If the meeting had gone well, my plan was to offer him free TRT at its conclusion. If dan liked the idea, I would have arranged for his testing to be done later that day or the next day by an audiologist familiar with TRT whom I know in the Toronto area (there are some aspects of the TRT audiological evaluation that differ from a routine audiological evaluation), and I would have begun his TRT counseling immediately - before my return to Atlanta. Alternatively, if the meeting with dan had not gone well, my plan was not to offer him anything. But the meeting in Toronto never happened in the first place because dan was not interested in meeting with me to discuss his tinnitus at all.
I can only tell you that back in the mid-1990s when I was suffering so severely, if somebody had offered to come to Atlanta to discuss my situation with me on his own time and at his own expense, TRT or no TRT I'd have jumped at the opportunity.
There are very very few losers on this board. There are winners. And there are those who are on their way to winning. The only losers are the handful of individuals whose eyes are shut tight and who absolutely refuse to open them even the tiniest bit to see what might possibly be out there.
FINALLY....Thank you Dr.Nagler, was that so hard to say without grotesquely spinning the truth???? Sheesh....
I would agree with everything you said in this post, except the hostility on my part....but thats old water under the bridge and open to interpretation - that board was full of hostility.
I would agree with everything you said in this post, except the hostility on my part....but thats old water under the bridge and open to interpretation - that board was full of hostility.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
ok yes re-habituate....
honestly trobalt helps a lot to habituate, it lovers volume, and then if you slowly quit you get to habituate even on loud tinnitus, but you never habituate 100% maybe 30-40%
can you tell me i have hearing aids, when they made them they make me more annoying, they are open one, somethings they are too loud, and there is also echo that i hear thing outside and then machine play it too, and they were not cheap ca 10 000 euro for both, they are newly one made for tinnitus widen i think name is of company.
I am believe you are expert in setting those hearing aids, because you did help hesitate a lot of people with lower tinnitus. How they shout be set, louser or low volume, how to avoid echo... they keep falling out and they irritate me. Nurse offered to give me remote controller for adjusting volume...
We don't have CBT for tinnitus or TRT here no one does it. You get hearing aids and that is it... and if you need to see them you must wait 3-4 months for 20 minutes
@amandine didi you read this, what you think now?
I am very familiar with how to set wearable broadband sound generators, but I do not know enough about hearing aids to answer your question responsibly. For that sort of thing I always defer to an audiologist.
I don't know about TRT in Sweden, but you have absolutely incredible CBT for tinnitus in Linköping - quite possibly the very best in the entire world!
I think you are right @dan --none of us can or should judge anyone's tinnitus. I have moderate tinnitus so I have never walked in your shoes and knock on wood, I never will. I think I understand a bit how you feel because when I hear of someone who sticks their fingers in their ears to hear their tinnitus and then freaks out--well I get angry. I say to myself, 'Well, then don't stick your fingers in your ears!" I hear my tinnitus over most everything--sometimes even in the shower now--which is new. I have mostly habituated my reaction but I still know the difference between high and low days as I hear my tinnitus most of the day. I still want a cure as I doubt I will ever get to the "only hear it if I'm listening for it stage". I am thankful for the scientific people here like @attheedgeofscience and team trobalt because it is in science we will find the real problem and hopefully, a real treatment to turn down the volume or eliminate tinnitus altogether. Personally, I think help will eventually come from Big Pharma or from fixing a problem in the CNS--but I am neither a scholar or particularly savvy in understanding neuroscience. My personal doctor feels that it is a neurological problem and I believe him.
I write because I am disturbed by the direction this thread has taken. I empathize deeply with you. I respect your opinions and advice. At the same time I am also thankful that @Dr. Nagler took a lot of time to answer my questions and help me when I did not believe that habituation was possible. Because of his advice and the other members here I am able to function 80%-90% normally. This thread is about habituation so I know many newbies are reading it looking for some hope. I ask that you and Dr. Nagler take this long standing argument to private conversation. There is an apparent history of animosity between you and Dr. Nagler and it does no one any good to read adversarial posts between you guys.
Actually, I hate adversarial posts between any parties. The enemy here is tinnitus. If folks here feel compelled to toss spears, I wish they'd toss those spears at tinnitus instead of at each other.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Ok, thank you for information, do you know what hospital?
I have widex C4 -fs, are those sound generators, because they have white noise and also correct lower hearing on 7khz on left ear. Can you please google it and say are those good.
Thank you
For CBT for tinnitus I was thinking of Dr. Gerhard Andedrsson at Linköping University. He is about the best there is ... anywhere.
http://gerhardandersson.se/
They are combination units - hearing aids that have a sound generator component.
In all the back-and-forth in this thread I do not recall what it is that you are specifically trying to accompliush - but if you are asking whether or not Widex is a reliable manufacturer, it is.
In answer to the above I just want to add here that last week Dr. Nagler very kindly offered me free TRT treatment at his clinic in Atlanta. This free therapy includes the wearable TRT noise devices plus all the counselling sessions following as well as the two days of personal consultations and testing which I shall undergo with him in Atlanta. There will be no charge to me whatsoever. As funding any of this is an issue for me he is currently working with some people in France to try to arrange for free airfare and hotels etc..for me to get to Atlanta, stay there for two full days at least and then back home again. He is going to follow this up with skype counselling sessions also free of charge plus of course I can be in touch with him to ask and address any concerns I may have throughout my treatment. May I repeat here that this has been offered to me in entirety free of charge.
I have no idea why Dr. Nagler has decided that I am worthy of such free treatment but he has included me in amongst the 18 per cent of people who he treats for free. He is aware that I cannot pay for this treatment and am getting no help here in France and appear to be getting worse without treatment. Therefore I am very happy to say a huge yes and thank you to his offer. I need to get free of this ailment and move on with my life and if Dr. Nagler can help me with this then I am more than happy to say yes please and thank you Dr. Nagler!! Now hopefully all goes well and I can get to Atlanta to receive this therapy. I am now optimistic that there is a future with T....
Sweet amandine, the question is not why I have decided that you are worthy of such treatment. Rather, the question is why a Greater Power has granted me the privilege of being able to offer it to you in the first place. I guess for that we can both be grateful. I am so looking forward to meeting you!
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Thank you, Christian.
I would just like to add one thing here and hopefully put this topic to bed once and for all.
So @amandine responded that she received an offer. You already knew that @svintegrity received an offer, because it was a public one. So that makes two.
I have had some degree of tinnitus since 2004. When I first noticed it, I was really only bothered by it in the quiet. I was able to habituate to it in two months, just by leaving a TV or fan on. I then had a bout with a severe cold, in May 2014, which stuffed my ears up and that made me notice the tinnitus ringing in my ear a lot more. When the ear cleared up, the tinnitus really bothered me and it took about 4 or 5 months to habituate to it again. I now had a severe ear infection and even had a tube put in my ear in September 2015, to relieve the pressure. The ear has since healed but the tinnitus has been bothersome again since October. I know how to habituate it after doing it twice and when it was habituated, it didn't affect me in the least, even though I could notice it at night. Now I can't seem to get it to habituate completely and I feel like I have tried all the things I tried the last two times. I've tried relaxing, melatonin, headset with talk radio, and relaxing nature sounds with headset, and TV with headset, as well as all of these without a headset. It seems to be worse some days than others and maybe I'm just trying to rush it or thinking too much about it. I did have a lot of anxiety with the ear infection and other health problems, but the tinnitus didn't seem to be that hard to deal with the first two times, although it was real bad the second time, before I found out I did not have a medical problem causing it. Seems like I have a lot more anxiety with it this time and really letting it affect my life, when I feel like I've already learned how to live with it before. Any suggestions?
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