its 2014 and this is the widely accepted "gold standard" therapy (at least the "counselling" module of it) for tinnitus, comparisons to trains going by with tinnitus...really, so ridiculous, so funny and yet so sad... I'm going on vacation for the next 3 weeks, I just hope their aren't too many people who buy into this nonsense... question motives and keep your thinking caps on in the midst of your suffering
Well... from his point of view there is a cure....He doesn't have tinnitus after taking retigabine.I totally get what you're saying Mpt. But the way I see it: it's not as if there is a definite cure vs habituation, and people are choosing habituation. It's more like, snake-oils vs habituation.
Believe me, if there was a cure I'd be the first in line so long as it didn't have side effects worse than T, and providing that I could afford it.
But since there isn't a cure, what can we do? The only options I see are to remain miserable or try to live life to the fullest with T.
Hi Dr. Nagler,People live near railroad tracks, but are largely unaware of the trains going by every few minutes, right?
My trains are constant and internal rather than intermittent and external. But a sound is a sound.
Dr. Nagler
Hi Dr. Nagler,
There must be a reason that high frequency sounds are used to put you into a state of alarm/shock: emergency broadcast, smoke detectors, LRAD (used by law enforcement to disperse crowds with painful blasts of high frequency sound). These are all high pitched alarming sounds. If you were to put out a sound blast with the same pressure level (volume) but at a lower frequency (like say that of a train), it just wouldn't have the same unsettling socking effect on us.
You have a point I guess. Maybe we just have a built in dislike/fear for high frequency sounds. But than again, it is just a qualification your brain gives it. It might be more difficult to habituate to high frequency tinnitus, but still possible.
Thanks for the response@Telis -
I think the problem with the train analogy might be summed up in one of your sentences above: "If it were as easy as ..." Nobody said it was supposed to be easy! If it were easy, everybody would quickly habituate. If it were easy, there would be tinnitus, but there would be no suffering.
The fact that any time you want to you can walk away from the train tracks makes all the difference, in my opinion. That, and you can always cover your ears as a train approaches. Those two "escapes" changes the paradigm. With tinnitus, you cannot walk away. With tinnitus, if you cover your ears, it gets louder. These two factors create the potential for much greater limbic (emotional) and autonomic (fight-or-flight) involvement.
But strictly in terms of the neurophysiology of sound - well, the sound of the train starts out as a sound wave that is converted in the cochlea to an electrochemical signal that is conducted via the auditory nerve to the brain, where it is detected, processed, perceived, and evaluated. With tinnitus there is no sound wave; tinnitus starts out as an electrochemical signal. But from that point on there is no difference - it still gets detected, processed, evaluated and perceived by the brain.
That therapist you thought was nuts? Perhaps she understood more than you think but just couldn't convey it to you effectively!
Hope this helps more than confuses.
Dr. Stephen Nagler
Well... from his point of view there is a cure....He doesn't have tinnitus after taking retigabine.
Excellent explanation. The thing is you want to have control.@Telis -
I think the problem with the train analogy might be summed up in one of your sentences above: "If it were as easy as ..." Nobody said it was supposed to be easy! If it were easy, everybody would quickly habituate. If it were easy, there would be tinnitus, but there would be no suffering.
The fact that any time you want to you can walk away from the train tracks makes all the difference, in my opinion. That, and you can always cover your ears as a train approaches. Those two "escapes" changes the paradigm. With tinnitus, you cannot walk away. With tinnitus, if you cover your ears, it gets louder. These two factors create the potential for much greater limbic (emotional) and autonomic (fight-or-flight) involvement.
But strictly in terms of the neurophysiology of sound - well, the sound of the train starts out as a sound wave that is converted in the cochlea to an electrochemical signal that is conducted via the auditory nerve to the brain, where it is detected, processed, perceived, and evaluated. With tinnitus there is no sound wave; tinnitus starts out as an electrochemical signal. But from that point on there is no difference - it still gets detected, processed, evaluated and perceived by the brain.
That therapist you thought was nuts? Perhaps she understood more than you think but just couldn't convey it to you effectively!
Hope this helps more than confuses.
Dr. Stephen Nagler
@Mark McDill I have a question about your hearing/ masking devices- I understand you have hearing devises with built in white noise?
I am trying to decide if the help people to block out the T ? Could you possibly tell me if your are happy you bought them? Here is my story in brief.
My T started this past March 2014 and has been non stop/chronic since then. Mine started with a sinus infection that I just could not seem to shake. I was on several antiobics for manyweeks back to back and steroids, and then BOOM it hit me....the "T" word. I had no idea what it was and assumed I must surely have a brain tumor! I went through all the testing you can possibly have done, I think. After several MRI's several ENT's ( who basically laughed at me) and then finally I found this forum that has basically helped me realize I am not alone.
I noticed in one of your comments you mentioned that you have hearing devices. I have high frequency hearing loss and also hypercosis in both ears.
I was fit for the very sophisticated type hearing devices today that can actually adjust automatically to your environments, have a white sound and also bluetooth capability for your iPhone, etc.
These are by no means inexpensive devices and my insurance pays nothing. Do you feel that that yours have helped you to notice your T less? I would love to hear that they are worth the thousands of dollars they will cost me.
tyty
Yes, after I got T I just happened to stumble across them (in desperation). And, YES, they have been an absolute life-saver for me. I went through basically the same things you mentioned (ENT, MRI, et al) however the origin of my T was not a sinus infection (I think mine is related to upper cervical issues).
I live in Omaha, NE -- home to Nebraska Hearing Instruments. My audiologist, Ed Granger, is a phenomenal individual (to whom I owe a lot). He fitted me with the latest hearing aids that have programmable white noise. In other words, the white noise can be targeted specifically to mask your T. You are involved in the process in that you are the one that adjusts the white noise (pitch, tone, volume) until you find the precise white noise that masks your T and gives you the most relief. Again, they were life-savers for me; they gave me so much relief (especially at night) and I felt like I had a sense of control over my plight. I can't say enough about Ed, he is not only a great audiologist, he's a natural counselor (he was just born with it). He will work with anyone/anywhere; he's just that kind of guy.
I will admit, at first they didn't work too well. I still recall one particularly icy-cold Wednesday evening I stumbled into Ed's office and was just staring straight ahead (catatonic) because my T was blowing away the highest level white noise -- he talked me through it and I'm glad he did. The most white noise they are allowed to pump into your ear (per Fed Reg) is 60 db; my T was so loud at the beginning it was blasting its way right through (not sure the db range of my T but it was obviously much higher than 60 db -- nothing could mask it). The other consideration is the freq range of your T; mine was just under the upper threshold (6.5k) of the white noise generator's 7k range. However, after 3-4 weeks it brought my T down and over the last year it has been taken down to the low 40 db range and is no longer high-pitched scream; now it is a soft hiss (far more livable).
I found the real value in them was being able to sleep at night; all T sufferers know the importance of sleep. Granted, some people don't like the sound of continuous white noise but my T was so bad that I wanted to hear anything else and have some sense of relief -- they worked great.
They also have devices that help H sufferers; I don't know much about them other than they can be set to dynamically inhibit the volume levels allowed into your ear (they actively/instantly plug your ears based on noise levels). You would need to talk to them about that; I'm not too informed.
Give Ed and gang a call and drop my name; they would be more than happy to help you in anyway.
Nebraska Hearing Instruments (NHI)
http://www.nhi-omaha.com/
402-933-1453
Mark
Thanks for the response
I can tell that the answer provided by Dr. Nagler made you upset.
Hi Dr. Nagler,
I don't understand this theory on sound. I have been to see a therapist and she said the same thing. If it were as easy as getting used to these every day sounds, this process would not be hard (for me anyway). The sounds of the city, fans, screaming children, trains etc. I don't see how these relate to tinnitus. These sounds are all easy to habituate to. You pay them no mind after a period of time, easy. I don't have a problem with environmental noise, even loud noise. It's the type of noise that is a problem for me.
I really wish I had the same reaction to a train, traffic noise (or pretty much any other sound that I have ever heard) as I do with my tinnitus. My tinnitus is shrill, painful, and it hurts my head (at least this is the way I perceive it). I have never heard any life noise that I can compare to my T. This is the reason I can not explain to others what it sounds like. The closest thing I can think of is nails on a chalkboard, but even this doesn't really do it justice. So for people to describe tinnitus like moving from the country to the city or like living by a train, just doesn't make any kind of sense to me.
There must be a reason that high frequency sounds are used to put you into a state of alarm/shock: emergency broadcast, smoke detectors, LRAD (used by law enforcement to disperse crowds with painful blasts of high frequency sound). These are all high pitched alarming sounds. If you were to put out a sound blast with the same pressure level (volume) but at a lower frequency (like say that of a train), it just wouldn't have the same unsettling socking effect on us.
There is such a difference in sounds-comparing the sound of train to tinnitus seems like comparing apples to oranges. Not sure I can buy this theory of "a sound is a sound".
When my therapist pitched this theory to me, I actually quit seeing her, thought she was nuts. I thought obviously she doesn't understand a thing about tinnitus (yet she was a tinnitus expert). Now I hear this theory constantly in the tinnitus community.
I don't get it??
Thanks for all your help and support here at TT.
Telis
I'm sorry for everybody that [has tinnitus], because it is a disgusting condition to have - not only because its hard to endure, but also because the world is telling you it can be overcome - at which point it becomes your fault for not overcoming it....see my point here?
I'm saying don't perpetuate around the world like tinnitus is no big f-ing deal!I honestly don't. What are you saying we should do, be miserable and dwell on our misery?
I've said this several times now: it's not a situation of cure vs habituation. At this time in 2014, it's a matter or habituated vs remain miserable. Maybe that scenario will change in the next few years, but at the moment, that's where we are.
Of course, when a real cure is found I'll be shouting for joy. But I have to live my life until then.
I'm saying don't perpetuate around the world like tinnitus is no big f-ing deal!
Edit:and dont say severe tinnitus is like that o'l railroad drivin' bye.
I was not saying that you have to suffer. I was agreeing with Telis that comparing tinnitus to a ticking clock, an airport, or a train station or your pants (the 4 things clinicians try to sell you) , is ridiculous.
I was not saying that you have to suffer. I was agreeing with Telis that comparing tinnitus to a ticking clock, an airport, or a train station or your pants (the 4 things clinicians try to sell you) , is ridiculous.
That would sound like sweet music to the likes of @Mpt (and myself...!)
Unfortunately, most people on this board are part of the remaining 15-20% that you mention in another post further up. Which is why - as you say - the concepts (and therapy) is ridiculous. Like being given paracetamol for a broken knee-cap. But it is what it is...
One way or another, I wish everyone on this board the very best...
Take care.