"Don't listen to people on those forums" - Heard it before?

[Per]

I'm still picking up different books on T trying to learn as much as I can on this mysterious condition. Some literature can be classified as guidance and self help books, other books takes a more medical and scientific approach. I've had some interesting days while reading books on T&H that's supposed to be written for medical personnel like GPs, ENT's etc. Some of these books are not for sale but my local library have them because of the amount of students using the facilities there. Normally the authors of books like that are either psychologists, audiologist or scientist. No wonder we meet ENT's that seems to be responding on autopilot cause I can recognize the common replies and philosophies from those books.

"Don't listen to people on Internet forums" seems to be another mantra that docs are very occupied with. I actually said to one of them that I find forums to be very knowledgeable cause we share first hand experiences, something I can NEVER get at an ENTs office. Also, I've heard so much nonsense from medical personal on T&H that I actually value the right forum higher than many docs on the topic. ALL ENTs and GPs are trash talking Forums so I guess they read the exact same books that advice medical personnel to avoid forums - perhaps they will be shocked to find that their own theories are crap? Maybe they would discover that some T patients have made progress on the basis of their own stubborn treatment concepts.

I'm so sick of calling a large hospital asking if they can offer Hyperbaric medicine and getting "that does not work, so don't waste your time" kinda response. So if I say: "Well, I'm reading a quite promising new test report from China now about Hyperbaric treatments against T" they always dismiss it as dangerous and not proven etc. Many of them haven't even heard about it! And that is disappointing cause they are the ones that really should educate themselves on matters like that. But no, hey just dismiss EVERYTHING they don't know of as snake oil. Even if it actually does provide relief for some T types. They don't seem to be willing to kill some darlings and produce some new alternatives - cause the book doesn't allow it!

Tomorrow Im having my ENT assessment number 2, mainly to be referred to another audiologist that have said she is willing to take my T&H case. I'm going to keep on talking good about forums, perhaps they should register with a profile themselves? For what I know there could be some unfaithful servants of the ENT association that sneaks around here incognito.

 

[object16]

this forum especially, is really good. the members are "on the level", generous, and really trying hard to find the "key" to how to cope. i have discovered that you need to "experiment" with different types of sounds to try to find what works the best for your particular brain setup. i play the CR NM constantly through the day in my office, along with white noise, and am experimenting with different sounds for night time, which is my biggest challenge. each day is one small victory, days turn into weeks, weeks turn into months, and months turn into years. gradually with the correct approach, i believe it can be beaten. i am throwing "everything" at it, at the moment.

 

[yonkapin]

I've been told to avoid forums by an audiologist and an ENT before. They were more specifically advising me to avoid forums because of the typical hysteria and negativity you can come across. And in the beginning I would sort of have to agree, I ended up on a few other forums filled with bad stories, shoddy information, trolls, negative posts, suicidal threats, etc. It's not something you want to read when you've just gotten tinnitus or hyperacusis - it made things seems a lot worse than they were for me.

This place is very unique though, everyone is super supportive of each other, all the information on existing and upcoming treatments is very well organized, people openly share their experiences, there are no trolls or useless arguing between members. It's awesome to have a place like this handy.

I understand the frustration dealing with GPs, audiologists and ENT's who dismiss upcoming treatments and alternative approaches they may not be familiar with. But this is common across all fields of medicine in my experience, doctors aren't into taking risks and don't want to leave themselves liable if anything goes wrong. I've brought up stuff like AM101, Vagus Nerve Stimulation and ACR NM with the leading ENT here and he had absolutely no clue about any of it.

I find it strange that in this day and age, where we can exchange information at such great volume, that we don't have more medical professionals openly interacting with patients online through platforms like this - not only would it benefit sufferers like us but I think it would greatly benefit the medical community as well - they'd learn quite a bit from this forum alone.

 

[christine kauhane]

yonkapin ,I agree with you , this is the best site no matter how i'm feeling theres always someone here with a possitive story to share. i've only came this far because of this forum they were people here for me since day one to help me go though my very first day with T and every day after that. i'm so glad to have a place to come to and people who understand what we go through and they truly understand. none of my family understands this T thing and they look at me like i'm fine but little do they know that i have a screaming whistle in my ear 24/7 and at times i'm not ok! My husband keeps forgetting i have T and some times does or says something that would make me just go off, i feel so bad cause i know it's hard for him too.and when days like that happen i come here and i start to feel better.. My husband came on my page one night cause i did not log out and he was reading some of the stories and he said he did not know how bad it could get at times, maybe all those time when he would say things he thought i was just making it up in my head but saw that there was alot of people going through the same thing i have been telling him about. now he's more understanding to my T... Mahalo...

 

[Per]

I have just returned from my second ENT assessment, for those of you that don't know my story the first ENT visit in regards to T&H was in June this year. I need to do it all again cause the first time around I lived in another country. For medical purposes I need to get my condition assessed domestically. Todays session was followed by another hearing test and a threshold test in regards to my H. An audiologist preformed the latter. Here's a sample from the dialog with the ENT, I guess many of you will recognize this pattern. Wish I had brought my Edirol to record it. Anyhow, here's a fast forward version:

- I've been reading up on this matter and there seems to be very little knowledge on T&H in the medical environment (Jup, I know it's a tad provocative) I have actually found corresponding with other T sufferers online more useful. Seems to me that you need to have T to really understand what it's all about.​

"You shouldn't be reading all that stuff on the Internet. The quality on that kind of info. is low." (What does he know? Is he here? If so, please come trough)

- Well, I believe there's some interesting research material to be found out there but I have no idea why GP's and ENT's are so skeptical, after all new ideas and theories should be investigated thoroughly by everyone that deals with this condition.​

"Hmfr, well... I don't think you should believe in everything you read online. It can increase the T if you keep pushing for information, I really think you should be focusing on NOT thinking about T all the time."

- That's not easy. Unfortunately it has become a large part of my life, anyone that suddenly gets a loud constant hysterical sound in the head would make it important to search for potential solutions, don't you think?​

"Well... could be all sorts of types out there. The cause of your T&H could be numerous. Please lay down on the bench."

Then he removes some air wax with a tiny vacuum cleaner type of pen gadget that sounds like its going to rip my inner ear to pieces, terribly loud sound of high pressure air going directly into my ear is not what I find useful when having H! He then grabs his little metal clip thingy and lifts my one nostril up, then he points his flashlight around and mumbles something about "looks alright." He does the same in my throat. It basically ends there. After that I'm shuffled over to the other end of the hall for my hearing test (my second since June) I have no severe hearing loss and the result is fine. Same as last time. Then I ask if I could have a loss of frequency at a much higher range, like +7000hz or much higher. The audiologist just brushes this off with a cold "humans are not capable of hearing frequencies that high." Then I follow up by asking why there are some tests that can go up to 22.000hz, but all I get is the same ignorant reply.

Oh by the way. The audiologist also told me to stay away from forums. So I really shouldn't be here right now. I feel really naughty.

God save us all.

 

[Hopeful]

I have just returned from my second ENT assessment (....)

I can't believe why ENTs do not take this more seriously. They must have had numerous of people coming through with T. Many of those people must have been very distressed. I just don't get it.

I don't know what they imagine? A soft little pure tone only audible at nighttime? Well, i have that TOO - it doesn't bother me. It's the concept of one of my most important senses being totally fu**ed! Please!

F**k I hate that kind of treatment.

Edit: Excuse my language, moderator. Thank you for editing

 

[Erlend]

The problem with the doctor profession is that it doesn't award curiosity. The most boring people become doctors in many cases. People who just read what they're supposed to, then boom, they're doctors and can work from 9-5 and make money. If you hear something relevant to what your profession is that you don't understand, and you don't care, I do look down at you as a human. You should be eager to find out what this is.

They lack the curiosity scientists have.

 

[Paul D]

This forum works because nobody's trying to sell you on a particular product, treatment, and/or cure. And when an attempt is made to falsely promote some panacea, disguised as a caring, informed response from some quasi-professional, most people here see right through it, disuading people new to the sight or to T iself from following some charlatan's self-promoting, profiteer motives. A certain comeraderie exists here that offers insight into one's own condition through empathic response to like, or similar, condition of another.

 

[mick]

@Per

Your story is such a great example of why doctors are so bad. His response was quite telling as to what evidently is going on in his mind: "You do not have the great wisdom that a doctor like me has. You, you inferior being, are incapable of making any assessments on your own. You are incapable of understanding what you read." That is so insulting! Did he have one positive action to offer that could make your situation better? Did he provide you one bit of information that you did not know? It doesn't sound like he did.

You would think doctors would be eager to work with patients who are willing to research and understand things on their own and make a contribution. How could that not lead to the best possible care? All I can figure is that doctors just don't want to admit that they are not as wise as they think they are. Doctors suffer terribly from the "not-invented-here syndrome". Its clear that they would rather you suffer than be shown up.

It's not just ENTs and tinnitus by the way. The doctors shallowness, and unwillingness to put forth more than half-hearted effort astonishes me. The fact that they have the nerve to tell someone to not research on the internet while at the same time not being able to answer your questions, or offer any positive help is so very disheartening. Hey, how about putting some effort into answering my questions, and actually digging into the problem? If you did that, I would not have to do my own research on the internet.

Sparing a lot of details, recently I discovered I have a rare disorder which explains a lot about my heart problem. The doctor I explained it to said I could not have this particular disorder because the disorder only effected Orientals and they all died in their twenties. Sure enough though tests revealed that I do indeed have the disorder that I brought to his attention. No apologies from him though that he was wrong. This kind of thing has happened repeatedly to me.

Doctors have repeatedly told me "nothing can be done", "we don't know", "its too complicated", "just accept your situation and live with it", every excuse in the world to avoid actually making a substantial effort. I, however, keep trying, and keep making progress. As minuscule as my progress has been, it has been progress, and it is more than what they have done on their own. I often wonder how much progress could be made if I could find a dedicated person with a proper medical education, plus connections to resources and institutions that I don't have access to.

 

[Per]

@mick,

Right on. Most research reports and doctoral essays are now published online, so any doctor that tells their patient to avoid the Internet as a source of information reveals themselves as very obsolete! I wish severe T on them.

 

[Leah]

Hmfr, well... I don't think you should believe in everything you read online. It can increase the T if you keep pushing for information, I really think you should be focusing on NOT thinking about T all the time."
If I hear this one more time.......

 

[Riikka]

Actually that "don't listen to people on those forums" was a good advice for me when I first got T, about six years ago. But at that time forums and stories online were mainly about people not sleeping, having a bad quality of life, thinking about suicide,...because of T.

So when my T got worse a while ago I felt it was a bad idea to again search for articles and forums online. Fortunately I found Tinnitustalk, I think this place actually helps people to deal better with their T. Of course it is good to complain once in a while, but it is good people here focus on being optimistic.

I feel it is necessary to have a place like this. Having T can feel quite lonely, as other people don't really understand what our problem is. So just sharing things with other people with T already helps a lot.

I agree also that doctors don't always seem very interested in T and new treatments. Sometimes they don't understand how desperate we are and that we would gladly spent 100€ on a medicine that just might give some relief. I also feel my GP is just too busy and tinnitus might seem like something unimportant compared to high blood pressure, diabetes or cancer.

 

[LadyDi]

I can't say much more than you all already have. As Christine said, I feel that you all have been here for me from the very first moment I realized I might have to live with his condition -- which at that time was so disabling I could barely leave the house -- for the rest of my life. While my ENT basically said, "Get over it," you all were there for me. You comforted me, cheered me on, instructed me, told me not to give up, helped me make important decisions about my treatment. I can't believe how knowledgeable some of you are. I never will be able to repay you -- except to try to be here for you, too.

To be fair to the docs, though; all forums and Internet sites are not created equal. A lot are put up by people that just want to sell you product. Other forums, as some of you noted, are filled with caustic or panicky people whose opinions are just going to make afraid or feel worse. TinnitusTalk is an exception, and a credit to the people who founded it, staff it and post on it.

 

[Lulubug69]

I'm so grateful for this forum. I was so scared and overwhelmed and was hesitant to even look around. I cruised the internet for answers, and was determined to find the off switch for myself. I didn't, so I went back to TT.
What I found here was a group of people who were here to "support" others with T. Not a "wallow in it" with me kind of forum. We all have those low moments, but here, we are reminded we will be okay and are truly supported by those who live with the beast. There is so much information, REAL documented info. In other words you get honest truthful information. We also share what we have found to be helpful. In a word I found "hope." Thank you all who have already offered your help and a kind word to me. I am so happy to have found TT.

 

[nills]

Desperation turned into motivation can be a very powerful thing ... I see it on this forum every day!

 

[meeruf]

I don't understand the hate towards doctors. It's something I see a lot on these forums. I understand that people are pist-off because of their situation. But come on...! Get real! What do you want them to do? There is no magic pill for this like it is for; lets say clamydia.

I'm quite sure most ENT's don't like to say to people that there is nothing they can do. I think they see a lot of people that are bothered by this. It's not fun for they either. I think most of them feel quite helpless. Just imagine how many times your ENT have said to different people that there is nothing they can do.

I know a lot of ENT's can act like assholes and are not very good to express stuff. But most of them just fix stuff. Like, a broken eardrums or infection. The office to my ENT is filled with knifes and metal-tools. They are not therapists. Give them atleast some credit.

 

[Leah]

I agree, BUT my (previous) ENT truly has a horrible bed side manner.

 

[Per]

@meeruf,

Although your post is a bit off topic for this thread I will answer you. It's kinda ironic cause if you look at what people write on their ENT experiences and at the same time gaze at the informal poll, it should be rather obvious why so many are seeking both help and advice in places like this forum, and why the trust in ENT's are so absent. I really don't think it's accidentally so.

You are right, they are not therapists. Did anyone book an appointment at an ENT's office expecting a psychologist or therapist? I don't think so. When your visiting an ENT with a problem it is normal to expect medical knowledge and know-how, after all they accepted your call to action. In my mind you are actually explaining why ENT's should NOT take T patients as they don't know how to either treat it, suggest treatment, investigate research material or educate themselves on new science. As a result they should be honest enough to acknowledge the total admission of failure and avoid taking T patients at all. That's what I call getting real. It's as easy as that. If they know the outcome and know they can't share any knowledge that would help the patient to progress on some level they should just be honest about it and respond properly.

Here is how they should respond if they KNOW they can't contribute with anything substantial in the world of T&H:

"I'm sorry, we have no knowledge on tinnitus and hyperacusis and are therefore not able to provide you with a proper response or medical assessment. As we are not equipped with up to date knowledge on these matters we are not in a position to receive patients in this field. Thank you."

It would be far easier to identify knowledge if the medical industry were more honest on their own limitations, at the same time an ENT that really DO take an interest in T&H and really DO harvest from new science could inform in the same manner. It's not any different from other commercial industries that wave their specialties, it's no point in having unsatisfied customers, but I guess many of these ENT's think short term financial gain.

If they are so afraid of forums, Internet, treatment concepts they never heard about and science in general they should really just back off and let the world know that they have NO interest in T&H. If they KNOW there's nothing they can do to provide progression for their patient the most honest and helpful thing is to stop taking those assignments. If they proceed with this practice they are admitting fraud, cause that's charging money for nothing. One could at least expect a medical professional to be more up to date on the issues than the patient, and at least be humble enough to accept new input from external sources instead of nursing their own lack of insight and at the same time disrespect the patient by dismissing his/her ability to think for themselves.

The last time I went to an ENT (and probably the very last) I presented him with a clear and concise description of a physical sensation in my ear, he just brushed it off by "hmfr, stuff like that occurs. Can't say what it is" Later the same night I had to dig out the plausible cause myself and that's how I came to learn about tonic tensor tympani syndrome or TTTS. The description exact matched my sensations and in the literature it said it was a well known and COMMON side effect of H. Here's a small sample from the textbook: "In many people with hyperacusis, an increased activity develops in the tensor tympani muscle in the middle ear as part of the startle response to some sounds. This lowered reflex threshold for tensor tympani contraction is activated by the perception/anticipation of loud sound, and is called tonic tensor tympani syndrome (TTTS).

So where were the ENT "expert"?! If I knew what little interest and knowledge ENT's have on T I would have avoided those visits, I would be better off asking my neighbors dog for advice then to end up being met with zero understanding, ability, knowledge and/or interest in the issues at hand. It's about respecting the patient.

 

[meeruf]

@meeruf,

Although your post is a bit off topic for this thread I will answer you. It's kinda ironic cause if you look at what people write on their ENT experiences and at the same time gaze at the informal poll, it should be rather obvious why so many are seeking both help and advice in places like this forum, and why the trust in ENT's are so absent. I really don't think it's accidentally so.

You are right, they are not therapists. Did anyone book an appointment at an ENT's office expecting a psychologist or therapist? I don't think so. When your visiting an ENT with a problem it is normal to expect medical knowledge and know-how, after all they accepted your call to action. In my mind you are actually explaining why ENT's should NOT take T patients as they don't know how to either treat it, suggest treatment, investigate research material or educate themselves on new science. As a result they should be honest enough to acknowledge the total admission of failure and avoid taking T patients at all. That's what I call getting real. It's as easy as that. If they know the outcome and know they can't share any knowledge that would help the patient to progress on some level they should just be honest about it and respond properly.

Here is how they should respond if they KNOW they can't contribute with anything substantial in the world of T&H:

"I'm sorry, we have no knowledge on tinnitus and hyperacusis and are therefore not able to provide you with a proper response or medical assessment. As we are not equipped with up to date knowledge on these matters we are not in a position to receive patients in this field. Thank you."

It would be far easier to identify knowledge if the medical industry were more honest on their own limitations, at the same time an ENT that really DO take an interest in T&H and really DO harvest from new science could inform in the same manner. It's not any different from other commercial industries that wave their specialties, it's no point in having unsatisfied customers, but I guess many of these ENT's think short term financial gain.

If they are so afraid of forums, Internet, treatment concepts they never heard about and science in general they should really just back off and let the world know that they have NO interest in T&H. If they KNOW there's nothing they can do to provide progression for their patient the most honest and helpful thing is to stop taking those assignments. If they proceed with this practice they are admitting fraud, cause that's charging money for nothing. One could at least expect a medical professional to be more up to date on the issues than the patient, and at least be humble enough to accept new input from external sources instead of nursing their own lack of insight and at the same time disrespect the patient by dismissing his/her ability to think for themselves.

The last time I went to an ENT (and probably the very last) I presented him with a clear and concise description of a physical sensation in my ear, he just brushed it off by "hmfr, stuff like that occurs. Can't say what it is" Later the same night I had to dig out the plausible cause myself and that's how I came to learn about tonic tensor tympani syndrome or TTTS. The description exact matched my sensations and in the literature it said it was a well known and COMMON side effect of H. Here's a small sample from the textbook: "In many people with hyperacusis, an increased activity develops in the tensor tympani muscle in the middle ear as part of the startle response to some sounds. This lowered reflex threshold for tensor tympani contraction is activated by the perception/anticipation of loud sound, and is called tonic tensor tympani syndrome (TTTS).

So where were the ENT "expert"?! If I knew what little interest and knowledge ENT's have on T I would have avoided those visits, I would be better off asking my neighbors dog for advice then to end up being met with zero understanding, ability, knowledge and/or interest in the issues at hand. It's about respecting the patient.

People seek advice from these forums because the lack of a cure. If there was a cure, the ENT's would fix it, and these forums would not exist. You can't expect that all ENT's should have all the knowlegde people on these forums have. Internet will always be more powerful. The ENT is just one person.

I still don't understand the lack of trust that you push. The ENT's would actually help you if there was something concrete to do. I was at three diffrents ENT's, all gave different answers. But they also said that their answers was not 100%, since they know very little about the inner ear. Why should they use time on us when there is no concrete thing they can do? There is other people behind you in line that have other condiotions that they can do something about.

And my family doctor. He admits it. He said he have no clue about tinnitus.

Maybe you have just been unlucky with the doctors you have met. But you really can't jugde all medical people because of that.

 

[Per]

@meeruf,

I'm introducing a solution for all those ENT's that doesn't have any knowledge on T&H by urging them to stop taking patients in this specific field. At the same time I'm making it perfectly clear that those who really DO contribute and do take an interest in these issues could flag that as well. This would make it far easier for us to navigate and find the right doctor to manage the T as optimal as possible . Nowhere do I decline the ENTs ability to treat common illnesses related to their medical profession. Nor do I assume that other people in the medical field do fail in their respective major. As I so thoroughly elaborate it would be of great importance for all T&H sufferers if the medical field in general could be so honest as to admit specific lack of knowledge to avoid disappointments and frustration, it should be quite easy to conduct . If an ENT is charging patients whilst not being able to really help cause of lack of knowledge and abilities, that person should be obliged to avoid taking assignments in that field. After all, we are talking about a specialist practice here and not a general practitioner. You get there by referral. To be honest I'm quite amazed that they actually take on patients when they KNOW the outcome will be of no substantial help for the patient at hand. In my line of work that would be defined as unacceptable behavior.

Unfortunately cause of a lifelong situation with muscle and joint pain I've spend more than a fair share of time dealing with hospitals and medical professions, I do respect those who manage their special field with great honesty and integrity. Whenever I undergo surgery I do this knowing that the surgeon is capable of treating my problem, why shouldn't this apply for ENT's? We all know that T is a very challenging area and I don't expect miracles or cures when seeing an ENT, but getting totally dismissed cause of lack of knowledge and interest is just such a great waste.

As far as your family doctor goes he seems like an honest person admitting his medical limits. That actually helps more than any false assessment based on lack of knowledge and interest. All I want is for us to be treated with some earned respect and dignity, when the ENT says "I have no clue what to do here cause T is not my field of interest" I would like to have received that information BEFORE I got there, after all they know in advance what each patient is there for, but I guess that doesn't produce the same financial results for the ENT.

This forum is jam packed with people sharing the same stories and experiences with ENT's and other doctors, this frustration is as I have elaborated on earlier not uncommon to T&H sufferers around the globe. For this to come to an end I believe we need to speak out. Next time you find yourself disrespected and dismissed by a doctor just cause of lack of knowledge then refuse to pay! Ask in advance if they take special interest in T and make sure they commit verbally that they have ideas, treatment knowledge and general interests that will make it worth your visit. Make'em work for they money, don't let them charge you for nothing. In my case I was referred by my general practitioner and next time I visit him I'm gonna make sure he knows that the ENT was incapable. That way he won't earn more undeserved money from unfortunate T patients.

Wish everyone a tranquil week end!

 

[Leah]

I have apt with ENT on Tues.it is through the Tinnitus Mgt Clinic at the Cleveland Clinic waited 6 weeks for this appt.
Because of this board and this thread, I now will using a different approach and will be asking
only the major questions. My last appt., then on to "accepting". I made this apt because no one has even looked in my ears, and just have to cross off the obvious from my list. Thanks for all the good information.

 

[Per]

@Leah,

Good luck on Tuesday Leah. Tell us how it went when time comes.

 

[Leah]

@Leah,

Good luck on Tuesday Leah. Tell us how it went when time comes.

Thanks, I will let you know.