Medical Forum / Diseases and Disorders / Tinnitus / April 2004
Experience in Treatment 3 Years Later
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fbionyourtail - 17 Apr 2004 15:29 GMT I have been suffering from Tinnitus for at least 5 years that I am aware. Being in the NY-NJ-CT area masks it because it's so noisy that you don't even know that you have the start of something awful. I haven't posted in over 2 years because I left this group looking at many angry, accusatory suffers, those with fake names and those with MD/PhD afterwards sounding like schoolchildren. I only hope that you people may even take a step back and refrain from bashing others because like many I'm sure, I left this group because of the negative energy. I'll explain my latest attempt to get help and you'll see why this group could be so helpful if that negativity was removed.
I've had this high pitch that is louder in my left ear than right, coupled recently with pain or constant pressure the past few weeks -- you know what I mean by being difficult to describe sometimes. It hurts now. I'm also unable to listen to a telephone easily in my left because the sound seems to be so loud to be hurting my ear. When I use headphones for my walkman (low volume) I can turn them around and realize that I have significant loss in frequency hearing in my left ear because the cymbals and high hats are missing much of their sheen and are sometimes somewhat lost altogether. The bass has lost its punch. It's very depressing and even now as I type there is this weird sound imbalance between my left and right ear even in relative quiet. It's tough to find a ringing cell phone left in a cluttered room because I'm having a tough time locating sources of sound.
After my condition worsened these past 2 years I just went to an Otolaryngologist here who was recommended to me by a relative who is a doctor and well respected. This quack gave me a very short time to explain the barest of my affliction while he proceeded to check the physicals, e.g. look in my ears, down my throat, check for congestion. 3-4 in total at best before he sent me for an audio exam. Didn't seem to care what kind of sound, just a tad about pain and that's all. Very impersonal and somewhat smarmy.
I went for the audio exam. Amusing is that the headset I had placed on my head indicated that the guys equipment wasn't grounded properly -- there was that audible buzz that you hear. Pretty loud too in the headphones! Well, I had a hearing test and I realized I was cheating in a number of ways. I couldn't hear a lot of the sounds but you (1) can sense when those tones are sent and (2) while you can't 'hear' the sound you can sort of sense a change in air pressure or some change that enables you to identify a sound is being played but can't tell at all what it is. Much to my shock, I got back a report that my hearing is pretty good and that I'm well within normal range, and my left ear isn't so far off from my right at all. I'm really doing pretty well. Are you joking?
I went back to the quack after the test and told him that i've been having real problems with my left ear. You don't sleep with an FM radio tuned to static because I shouldn't have problem. He said to me that I went to see the "audiologist to the stars" and my report showed what it did. I have decided that for the most part these guys have the greatest racket/scam around because my $50 radio is grounded better than this guys $500K equipment and I can tell easily that my hearing is really going downhill in one of my ears with a simple frequency test. They do that with eyes in comparing one to the other why not ears? I told him that I was suffering from what I think could be "hyperacuisis" and he told me that "Hmm... you suffer from having too perfect hearing?" I told him I thought it meant I perceive sounds louder than the ordinary and he went on for a sentence about perfect hearing and nothing to do with loudness levels at all.
I'll say this much -- unless you are dealing with a doctor who has some idea of what is going on with tinnitus, probably a sufferer him or herself, brace yourself to be treated like an imbecile. Not all doctors have such poor bedside manner but many may not be sensitive to your needs as they should be. I'm not sure what to do but I'm getting ready to tell my cousin that any shmendrick with access to a patient's unlimited insurance funds (which we don't have for this problem) and high priced machines will eventually be able to tell most something (albeit little) about their problems but I'm sure this guy doesn't have a clue regarding Tinnitus. If he does, he's too damn smarmy to appreciate that we may have serious problems he cannot detect.
3 years ago I happened to be on a business trip and met Dr. Stephen Nagler. I found him to be rather gracious. Many of you are accusing not just him but other professionals here as being disingenuous and caring only about money. I couldn't disagree more and would say that for many here, trying to help people cure themselves of their problem is their labor of love and, at the same time, they do have a business to run. I can understand sometimes the dificulty of perception but when looking at what these people share here for free it amazes me that those efforts are lost because you can only focus on the fact that these people have a practice to run. I know from meeting him that Dr. Nagler suffers unfortunately just like me and you and I am very sympathetic to those who understand my plight and who are more likely NOT to profiteer than those quacks like the above who don't have the problem and dismiss us easily provided our insurance pays off. I for one was very happy with the professionals who actively post here. Like anybody else, I don't have to pay a dime to go to their clinic but they helped. I bought Dr. Vernon's Q&A Book on Tinnitus that was so meaningful to me and thank you all of you for your help in the past.
I hope that you guys chill out and just try a cease fire for a while and let everyone live here peacefully with their signatures. No need to defend your positions... start anew as though the past is over and clear. The anger pushes people away, like me, who would have benefitted by staying. I'm guessing it won't last but hoping at least for a short time we'll not need kill filters and help the new people that have come here looking for help, being scared, depressed, and nervous about Tinnitus. They know nothing of the past and can use all the help they can get from experienced sufferers like you and me.
davesnyder - 17 Apr 2004 17:36 GMT I am having some success with a drug called Neurontin. Seems to control symptoms by upwards of 90%. Maybe you should try.
> I have been suffering from Tinnitus for at least 5 years that I am > aware. Being in the NY-NJ-CT area masks it because it's so noisy that [quoted text clipped - 98 lines] > nervous about Tinnitus. They know nothing of the past and can use all > the help they can get from experienced sufferers like you and me. Elly Byrne - 17 Apr 2004 21:01 GMT Hi there,
There is some news on the horizon. A clinic in Sweden has been treating patients with tinnitus, vertigo and pain for over 10 years - very successfully. Have a look at http://www.yts.se/english/index.htm
All your symptoms point to muscular tension of the neck and shoulders. Have a look around my site. Start at http://eebee.net/TinnitusIsaPainintheNeck.shtml
Tinnitus is a pain in the neck Elly's Tinnitus Resources http://eebee.net/ http://meniere.eebee.net/
For email: elly at eebee.cjb.net
>I have been suffering from Tinnitus for at least 5 years that I am >aware. Being in the NY-NJ-CT area masks it because it's so noisy that [quoted text clipped - 98 lines] >nervous about Tinnitus. They know nothing of the past and can use all >the help they can get from experienced sufferers like you and me. fbionyourtail - 18 Apr 2004 07:35 GMT Actually, I don't suffer from any of the symptoms that your site seems to indicate as potential sources and I'm not sure of the connection to your sites.
I don't grind my teeth. I don't have pain in the neck, shoulders or jaw. I have no problem opening my jaws wide or clenching them. My posture and computer chair are great.
>Hi there, > [quoted text clipped - 116 lines] >>nervous about Tinnitus. They know nothing of the past and can use all >>the help they can get from experienced sufferers like you and me. Stephen Nagler - 18 Apr 2004 10:52 GMT >Actually, I don't suffer from any of the symptoms that your site seems >to indicate as potential sources and I'm not sure of the connection to [quoted text clipped - 3 lines] >jaw. I have no problem opening my jaws wide or clenching them. My >posture and computer chair are great. .................
Like I've told Elly on many occasions ...
Tinnitus is a pain in the a.s, but not always a pain in the neck! :-)
Also, thanks much for your kind comments earlier in the thread regarding your trip to Atlanta. I've met many folks with tinnitus (not as patients) who have passed through town for one reason or another. Not exactly sure who you are, but I think so. Did we have lunch at a veggie restaurant, the Sunflower Cafe?
smn
terri231@knowsspam.mam - 18 Apr 2004 13:57 GMT >>Actually, I don't suffer from any of the symptoms that your site seems >>to indicate as potential sources and I'm not sure of the connection to [quoted text clipped - 9 lines] > >Tinnitus is a pain in the a.s, Like you.
<snip self-serving garbage>
>smn Terri http://pub219.ezboard.com/btinnitusactivismandsupport
PaulS - 18 Apr 2004 14:27 GMT On Sun, 18 Apr 2004 09:52:43 GMT, Stephen Nagler <nagler@tinn.com> wrote
> >Tinnitus is a pain in the a.s, > > Like you.
> Terri Once again Terri saved us from a constructive thread of positive posts.
Why, if you restrict your own board to keep out those you personally disdain, do you seek those same people in another venue? Strange behavior for a mentally well-balanced person. But typical behavior for you.
PS
R Benner - 18 Apr 2004 14:35 GMT A simple killfile entry takes care of the emotional vampires of the internet. Now if everyone would just stop responding to these trolls, it would be even better.
> On Sun, 18 Apr 2004 09:52:43 GMT, Stephen Nagler <nagler@tinn.com> > wrote [quoted text clipped - 12 lines] > > PS terri231@knowsspam.mam - 18 Apr 2004 14:48 GMT >On Sun, 18 Apr 2004 09:52:43 GMT, Stephen Nagler <nagler@tinn.com> >wrote [quoted text clipped - 12 lines] > >PS I am of the opinion that the thread went bad when nagler posted, so my post is as "constructive" as yours.
Terri
http://pub219.ezboard.com/btinnitusactivismandsupport
Rolando - 18 Apr 2004 23:35 GMT > >On Sun, 18 Apr 2004 09:52:43 GMT, Stephen Nagler <nagler@tinn.com> > >wrote [quoted text clipped - 17 lines] > > Terri Is stupidity an underlying cause of tinnitus. I think I must be stupid. I read the first posting to a thread. I continue. Then I start to have trouble following the logic of responses. Let's see: Nagler responds positively to the thread's originator mentioning a meeting they had had. Terri responds to Nagler that he is a pain in the a.s. Then, Paul S (I think I like Paul S) responds to her in a bit of a chastising way and Terri responds that the thread whent bad when Nagler posted.
I don't get it.
And I must be stupid cause I took the time to do a Google search on Terri's other postings, trying to get some context. I'm using a friend's computer, and maybe it's broken or something, but she's only archived back to the beginning of April, or something. I found sensible, sensitive posts in other groups but not here and always a dig at Nagler. Which just isn't on topic, is it? Just like this one? Now I'm acting stupid, too.
What I like about this group, though, is that sooner or later someone is going to pray for me.
Jim Chinnis - 19 Apr 2004 00:12 GMT tebusco@aol.com (Rolando) wrote in part:
>What I like about this group, though, is that sooner or later someone >is going to pray for me. Those folks don't actually read this newsgroup. They just crosspost here.
I hope that clarifies everything. :-)
 Signature Jim Chinnis / Warrenton, Virginia, USA Want to discuss Meniere's? See http://groups.yahoo.com/group/MenieresDG
terri231@knowsspam.mam - 19 Apr 2004 01:35 GMT >> >On Sun, 18 Apr 2004 09:52:43 GMT, Stephen Nagler <nagler@tinn.com> >> >wrote [quoted text clipped - 28 lines] > >I don't get it. When you read Nagler's posts you need to realize that when he is being "nice" it is for a self-serving reason. He was recently very nasty to someone and now he is trying to change his image in case people read his nasty words by pretending it was just a "difference of opinion". He is not nice to people that disagree with him, cross him, or make him look bad. Most people that are nice to him are so because they are afraid of what he will do if they aren't -- because they are aware of what he has done to others.
He has been banned or asked to leave other tinnitus forums because his comments and demeanor to others cause a tremendous amount of acrimony -- not one incident, but too many to count. In several cases he did whatever he could to violate forum rules, launch email flame wars, hack into boards when he wasn't welcome, and use multiple names (as he does here) to get around being banned.
My personal opinion is that there are mental health issues that need immediate attention and when people stroke his ego, that just reinforces his skewed self image making it harder for him to seek the help he needs. I have watched this behavior for nearly three years now both here and on other forums and groups and I am convinced that in the absence of professional help, containment is the best approach.
>And I must be stupid cause I took the time to do a Google search on >Terri's other postings, trying to get some context. I'm using a [quoted text clipped - 3 lines] >dig at Nagler. Which just isn't on topic, is it? Just like this one? >Now I'm acting stupid, too. Would you want to be warned of a potential problem if others were aware of it?
>What I like about this group, though, is that sooner or later someone >is going to pray for me. Sci.med.cardiology is better know for their devotion to prayer.
I welcome your interest in the situation and hope you view it with the idea that not everything is exactly as it appears at first glance. I look forward to the day when I no longer feel this sense of obligation.
Terri
http://pub219.ezboard.com/btinnitusactivismandsupport
fbionyourtail - 21 Apr 2004 06:58 GMT >When you read Nagler's posts you need to realize that when he is being >"nice" it is for a self-serving reason. He was recently very nasty to [quoted text clipped - 4 lines] >are afraid of what he will do if they aren't -- because they are >aware of what he has done to others. Perhaps his response to me may have nothing to do with damage control but, perhaps, a polite response? As I said, please leave the past alone and be progressive from here on in!!
While I'm not sure that I agree that the information on your site is relevant to my problem, that's fine and I can politely disagree and talk about our difference of opinion. Perhaps I'm mistaken, but maybe I'm absolutely correct. But there is still no need for antagonism.
I don't think there is any fear factor here -- I have seen this 3 years ago. Let's just have a polite conversation and no strong words.
:) Rolando - 23 Apr 2004 04:23 GMT > >> >On Sun, 18 Apr 2004 09:52:43 GMT, Stephen Nagler <nagler@tinn.com> > >> >wrote [quoted text clipped - 62 lines] > Would you want to be warned of a potential problem if others were > aware of it? Thank you for the explanation. I would want to be informed of your experience. And compare it to mine. And to others. The thread began with a compliment and interspersed with a few other things the compliments and politeness continued.
I know there was recently some acrimony. But the man gave me some good advice. And there it is.
> Terri > > http://pub219.ezboard.com/btinnitusactivismandsupport Croak - 19 Apr 2004 02:09 GMT Rolando wrote devotionally:-
> What I like about this group, though, is that sooner or later someone > is going to pray for me. lol bless you my son
Cheers hic
fbionyourtail - 21 Apr 2004 06:49 GMT >I am of the opinion that the thread went bad when nagler posted, so my >post is as "constructive" as yours. > >Terri > >http://pub219.ezboard.com/btinnitusactivismandsupport Terri -- My whole point of starting this thread was to STOP behavior like this. As I was told when I was a kid, if you have nothing nice or constructive to say then you might be better of not saying anything at all.
It is amazing that I am away on business for 3 days and there is almost nothing constructive posted in response but "since he/she posted then I have to tell them they stink."
I hope that this can stop so that new people coming here can benefit from a dialogue that is productive.
Croak - 18 Apr 2004 23:18 GMT PaulS wrote disdainfully:-
> terri231@knowsspam.mam wrote... > Stephen Nagler wrote
>>> Tinnitus is a pain in the a.s,
>> Like you.
> Once again Terri saved us from a constructive thread of positive posts.
> Why, if you restrict your own board to keep out those you personally > disdain, do you seek those same people in another venue? Strange behavior > for a mentally well-balanced person. But typical behavior for you. da towel isn't a real person she's a thought-form conjured up by someone with a "hobby"
take no notice
Cheers hic
PaulS - 19 Apr 2004 00:43 GMT > da towel isn't a real person > she's a thought-form conjured up by someone with a "hobby" > > take no notice > > Cheers hic LOL - Good point!!
PaulS
terri231@knowsspam.mam - 19 Apr 2004 01:36 GMT >> da towel isn't a real person >> she's a thought-form conjured up by someone with a "hobby" [quoted text clipped - 6 lines] > >PaulS Is there a point?
Terri
http://pub219.ezboard.com/btinnitusactivismandsupport
PaulS - 19 Apr 2004 15:42 GMT > Is there a point? Obviously......
PS
Elly Byrne - 19 Apr 2004 21:34 GMT snip
>Like I've told Elly on many occasions ... > >Tinnitus is a pain in the a.s, but not always a pain in the neck! :-) snip
>smn Unfortunately this particular pain in the *** cannot be cured by rectall surgery. Whereas a 'pain in the nec'k can be treated with a simple non-invasive program.
If only the medicos and researchers would get their heads out of their respective nether regions and lift their eyes higher. Then we might get somewhere.
Tinnitus is a pain in the neck Elly's Tinnitus Resources http://eebee.net/ http://meniere.eebee.net/
For email: elly at eebee.cjb.net
Stephen Nagler - 19 Apr 2004 22:25 GMT >Unfortunately this particular pain in the *** cannot be cured by >rectall surgery. ..............
So true.
Wouldst that it could! :-)
smn
fbionyourtail - 21 Apr 2004 06:45 GMT >>Actually, I don't suffer from any of the symptoms that your site seems >>to indicate as potential sources and I'm not sure of the connection to [quoted text clipped - 15 lines] >another. Not exactly sure who you are, but I think so. Did we have >lunch at a veggie restaurant, the Sunflower Cafe? Yes -- you have an impeccable memory. You and staff were first class all the way and sent a thank you although haven't been in touch for a while. Glad to see you are well.
Elly Byrne - 18 Apr 2004 20:55 GMT >Actually, I don't suffer from any of the symptoms that your site seems >to indicate as potential sources and I'm not sure of the connection to [quoted text clipped - 3 lines] >jaw. I have no problem opening my jaws wide or clenching them. My >posture and computer chair are great. I didn't have those problems either. I did not grind my teeth. I had no pain in my shoulders or face. I had no problem opening my jaw.
But I did have tension in the shoulder muscles. One therapist practically accused me of being a type A personality. Which I'm not.
But even though I did not fell tension or neck pain - the tension was still there. And until that tension was dealt with the T remained.
Tinnitus is a pain in the neck Elly's Tinnitus Resources http://eebee.net/ http://meniere.eebee.net/
For email: elly at eebee.cjb.net
fbionyourtail - 21 Apr 2004 07:04 GMT >>Actually, I don't suffer from any of the symptoms that your site seems >>to indicate as potential sources and I'm not sure of the connection to [quoted text clipped - 12 lines] >But even though I did not fell tension or neck pain - the tension was >still there. And until that tension was dealt with the T remained. I'm definitely type A. :) I do agree that tension does increase T (I've seen this occur) but I'm a little hesitant to spend a lot of money to go to Sweden without more of a potential causal connection to my T. I do other meditative techniques (martial arts) and acupuncture and have considered others. My reduced stress has not seen reduced T to any reliable level.
Elly Byrne - 21 Apr 2004 21:31 GMT snip
>>I didn't have those problems either. I did not grind my teeth. I had >>no pain in my shoulders or face. I had no problem opening my jaw. [quoted text clipped - 11 lines] >and have considered others. My reduced stress has not seen reduced T >to any reliable level. You could find an Alexander Method teacher or class and learn how to hold and relax you body. Or buy a book on the subject. There is a very good one mentioned on http://eebee.net/alex.shtml
Or visit www.balancecenter.com
Then you could do some of the exercises mentioned on http://eebee.net/earpain.shtml
Tinnitus is a pain in the neck Elly's Tinnitus Resources http://eebee.net/ http://meniere.eebee.net/
For email: elly at eebee.cjb.net
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