Poll: Was the Advice You Got on Tinnitus Talk More Useful Than Your ENT's Advice?

[Autumnly]

I can show you proof very easily in another thread (I don't wish to stir up anything or throw anyone under the bus so I will refrain from doing so here), where there were several members who went on to tell someone else that their advice or opinion was trash because he/she wasn't a medical professional. So this is highly contradictive to me.

The next point is, what is an over-generalized statement anyway? Is saying that people with T will habituate being categorized as over-generalization? Who decides what is over-generalization?

Yes, saying everyone habituates would be an over-generalization. However, habituation can also mean different things to different people. For some habituation means being rarely aware of the tinnitus which is not possible for millions of people.

 

[Fangen]

Yes, saying everyone habituates would be an over-generalization.

And would one say "Most people habituate over time" be an over-generalization?

 

[Autumnly]

And would one say "Most people habituate over time" be an over-generalization?

You don't want to understand what I was trying to say, I just said that some people seem more inclined to develop permanent spikes compared to other people and that some sounds that are okay for you might not be okay for others. Personally I don't care if most people habituate because that still leaves millions of people worldwide suffering every day. Perhaps it's correct that most people habituate, it seems like it. In the US 50 million people have some form of tinnitus, not sure if that is chronic, 20 million have bothersome tinnitus, 2-5 million have debilitating cases.

 

[Fangen]

You don't want to understand what I was trying to say, I just said that some people seem more inclined to develop permanent spikes compared to other people and that some sounds that are okay for you might not be okay for others.

No, I understand you fully, I am asking since there seems to be some kind of unspoken rule where members are attacked for saying something that is "over-generalization". I am simply trying to understand what that means since I don't understand who is deciding when it is or isn't.

Everyone is different, I think this forum already established it. Just because something doesn't work for you, doesn't mean people here cannot still give advice because there is bound to be someone else that it might work for. Same as people here giving advice on how freaking dangerous headphones are to the point you would for sure have a permanent worsening if you had it on for even a min. But that might be true for some people, so that's why we are all here to give advice to the best of our knowledge. It will never be applicable to EVERYONE, but just because it isn't, it should mean that you cannot give it.

 

[Fangen]

@Autumnly
Let me give you an example, I see people here giving advice all the time about sound machines and masking. When I use white noise (rain, waterfalls, whatever), it triggers my T and gets louder. However, it might be working for a lot of other members to calm or mask their tinnitus. I don't go and tell everyone that claims that masking helps that they are wrong or tell them that they can't give that advice since it isn't working for me. No one here has ever claimed that their advice is some kind of truth that is applicable to everyone.

 

[Autumnly]

No, I understand you fully, I am asking since there seems to be some kind of unspoken rule where members are attacked for saying something that is "over-generalization". I am simply trying to understand what that means since I don't understand who is deciding when it is or isn't.

Everyone is different, I think this forum already established it. Just because something doesn't work for you, doesn't mean people here cannot still give advice because there is bound to be someone else that it might work for. Same as people here giving advice on how freaking dangerous headphones are to the point you would for sure have a permanent worsening if you had it on for even a min. But that might be true for some people, so that's why we are all here to give advice to the best of our knowledge. It will never be applicable to EVERYONE, but just because it isn't, it should mean that you cannot give it.

I'd personally say any statement that is about all tinnitus patients should be taken with a grain of salt, for example "everyone can live a normal life with tinnitus or tune it out". But I completely agree with you that different advice will work for different people. I'd never make statements such as "this will definitely make your tinnitus worse or better" and I agree that people shouldn't make such statements!
Edit: completely agree with you on your last post! The only thing I'm vocal about is that a)some people seem to get permanently worse more easily and b) your safe sound levels might not be safe for other people but that's about it, when it comes to coping techniques that's up to the individual. Some people will, however, say that if you have a spike it's not due to noise but due to fear and they can't say that for sure either.

 

[Bill Bauer]

I find this interesting, so in another thread, there are people arguing that other members' aren't professionals so their advice is garbage, yet it shows clearly here that people think their PROFESSIONAL ENT are garbage and advice here at TT was more useful. I see a big contradiction...

One statement is based on Theory, and the other statement is based on people's experiences. When theory does not agree with observations, one should find a new theory.

What isn't OK though is a person claiming that they are able to diagnose a health condition when they have no medical training.

Yes, like telling a T sufferer that their symptoms Have to be due to stress.

 

[Bill Bauer]

Is saying that people with T will habituate being categorized as over-generalization?

Yes, it is. The correct way of saying it is "Many people with T will Likely eventually end up habituating".

 

[david c]

I read that thread, and no, that person didn't claim to be a professional. You, and some others said that person's advice was garbage because that person isn't a professional (which again, that person never claimed to be, and pointed out several times that they never claimed to be) - yet the poll clearly shows that members here don't find professional ENT trustworthy anyway. I think you simply just want to start drama where it isn't necessary.

Claiming to be able to diagnose health conditions on the basis that you occasionally hang out with some doctors is irresponsible - this is what that person did on that thread and this is what I and others called out - including the person whose health condition was being "diagnosed". From what I read of your own contribution to that thread you seem to be rather keen to start "drama" yourself.

 

[Ed209]

One statement is based on Theory, and the other statement is based on people's experiences. When theory does not agree with observations, one should find a new theory.

This makes no sense. What's based on theory and what's based on people's experiences? Your wires are tangled.

Yes, like telling a T sufferer that their symptoms Have to be due to stress.

I've never seen anyone say it has to be due to stress. That would be a diagnosis.

I agree with what's been said above with Autumnly and Fangen. We can only offer advice through experience and knowledge, and I'd say most of us are acutely aware that we are all very different and unique in how our tinnitus presents itself.

Claiming to be able to diagnose health conditions on the basis that you occasionally hang out with some doctors is irresponsible

This I don't understand. Where have I explicitly diagnosed a health condition? And how have I been irresponsible? We all offer opinions here, that's what a forum is all about. In the meantime, there are people on this forum legitimately telling others what drugs to take, and when, so why aren't you rightly pulling up those individuals for being irresponsible?

Continuing this is pointless. Lighten up a bit, crack a smile, and head over here and do something positive for once:

Vote for University of Michigan (Susan Shore) Tinnitus Research — Winner Gets a Write-Up

 

[Bill Bauer]

What's based on theory and what's based on people's experiences?

We have a poll where people report their experiences, and then we have people telling others that they are not a doctor. The latter is based on an assumption that doctors would know more about the condition than the sufferer. To paraphrase something I think I read on this forum: "Don't compare the 15 minutes you spent listening to a lecture about my condition at your medical school 30 years ago, with my years of living with the condition, years spent reading about all of the aspects of the condition."

Your wires are tangled.

Was it really That hard to understand that the poll was the one based on people's experiences?

 

[Ed209]

We have a poll where people report their experiences, and then we have people telling others that they are not a doctor. The latter is based on an assumption that doctors would know more about the condition than the sufferer. To paraphrase something I think I read on this forum: "Don't compare the 15 minutes you spent listening to a lecture about my condition at your medical school 30 years ago, with my years of living with the condition, years spent reading about all of the aspects of the condition."

You're confusing the hell out of me. What you're saying basically means you agree with me. In other words, we share the things we have learned and experienced, in our own particular cases, because that's all we can do. Sometimes I'll disagree with something I read, but that doesn't automatically make me right. It is just my opinion based on my own experiences and from reading studies about the condition for the last 4 years. I'm just another person with tinnitus, I'm not an expert.

However, my opinion doesn't matter, apparently, because I'm not a Dr. Yet now, like Fangen said, people are saying they don't want to hear what their Dr has to say anyway. It's all a bit confusing. What was the original point?

To me, it becomes irresponsible when people start giving out advice about what drugs to take without having any clue about the persons' medical history. This is potentially dangerous and is why that kind of stuff should be left to the professionals.

 

[GregCA]

No, I understand you fully, I am asking since there seems to be some kind of unspoken rule where members are attacked for saying something that is "over-generalization". I am simply trying to understand what that means since I don't understand who is deciding when it is or isn't.

"over-generalization" is often referred to as "hasty generalization". There is a reasonable definition here: https://en.wikipedia.org/wiki/Faulty_generalization#Hasty_generalization

 

[Bill Bauer]

In other words, we share the things we have learned and experienced, in our own particular cases, because that's all we can do. Sometimes I'll disagree with something I read, but that doesn't automatically make me right. It is just my opinion based on my own experiences and from reading studies about the condition for the last 4 years. I'm just another person with tinnitus, I'm not an expert.

I agree with the above.

To me, it becomes irresponsible when people start giving out advice about what drugs to take without having any clue about the persons' medical history. This is potentially dangerous and is why that kind of stuff should be left to the professionals.

Telling another person about a drug they might want to look into (by searching the net and this forum), and also telling them how they could get their hands on it, should their research convince them that the drug is appropriate for their situation is not equivalent to "giving advice about what drugs to take". The advice is for Them to look into this and to decide what to do. If someone believes that they are not knowledgeable enough to do this research and to make a decision based on that research, than that is great.

If the doctors were to think that T is a serious problem and if they were to know about all of the drugs that could be taken in all sorts of circumstances, one wouldn't have to do the above. Unfortunately, many doctors don't care and don't know. As a result it is up to each one of us to learn about tinnitus, about the published research about the various drugs/treatments, etc. Your doctor is NOT going to use pubmed or Google Scholar to find a medication or a treatment for you.

 

[LunarRXA]

My ENT was frustrated and annoyed. He had apparently seen 3 tinnitus diagnosis' that day back-back-back and wasn't in a particularly great mood. I sympathize to some extent, but telling someone (I'm 29) that their hearing is what they would expect to see in a 40/50 year old ... was rough, and honestly, unnecessary. I wish he had just told me that it wouldn't have any impactful day-day impact on my life and that I would acclimate.

 

[Fangen]

I'd personally say any statement that is about all tinnitus patients should be taken with a grain of salt, for example "everyone can live a normal life with tinnitus or tune it out". But I completely agree with you that different advice will work for different people. I'd never make statements such as "this will definitely make your tinnitus worse or better" and I agree that people shouldn't make such statements!
Edit: completely agree with you on your last post! The only thing I'm vocal about is that a)some people seem to get permanently worse more easily and b) your safe sound levels might not be safe for other people but that's about it, when it comes to coping techniques that's up to the individual. Some people will, however, say that if you have a spike it's not due to noise but due to fear and they can't say that for sure either.

Glad we agree on this!
I hope I don't come across as trying to be argumentative, but I really try to understand what people mean and sometimes I have to ask a lot to see if I understood correctly. I agree that we can't ever say to someone else what their spike might be, and we only base that from our own experience. All my spikes have been temporary and definitely been a lot worse because I was worried and stressing about it being permanent. I can respect that I cannot say that someone else has, but if you asked me in my worried mind with the spike on-going, I'd swear it was permanent. But yes, this is tough.

 

[Fangen]

Claiming to be able to diagnose health conditions on the basis that you occasionally hang out with some doctors is irresponsible - this is what that person did on that thread and this is what I and others called out - including the person whose health condition was being "diagnosed". From what I read of your own contribution to that thread you seem to be rather keen to start "drama" yourself.

The only person who likes to start things is you, to be honest. If you disagree, then you're very welcome to do so.

 

[hans799]

When I was in my panic phase and grasping for straws, the ENT coldly and snidely told me that this condition is untreatable and people have killed themselves because of it, so good luck to me.

Felt just like I had a broken thigh and the doctor "treated" it with a powerful roundhouse kick.

 

[david c]

The only person who likes to start things is you, to be honest. If you disagree, then you're very welcome to do so.

You are entitled to your opinion of course but it isn't one based on actual fact. If you wish to cite some past occasions when I have started an attack on the views or character of @Ed209 - rather than responding to an attack from him - then feel free to cite them - otherwise I'll take it that your opinion is simply based on prejudice rather fact.

 

[Mister Muso]

I haven't yet followed my ENT's advice. He said my tinnitus was caused by bruxism, and if I wore a mouthguard at night it would go away.

He completely ignored the facts I gave him about a lifetime of loud music, and the concerts that led to my tinnitus causing severe temporary deafness. I therefore don't have much confidence in following his advice. He seems incapable of understanding that multiple forms of tinnitus can exist in the same person, with no one single cause.

I guess it's worth a try at some point, but the hearing loss (which again he denied) has become more apparent as my hyperacusis has started easing off.

And to think he charges £250 and says he has a special interest in tinnitus!

 

[Alex Matyjasek]

I was told there was a 95% chance of it going away... Gave me Ginko pills and had to wait. After a couple of months he came to the conclusion that my tinnitus was here to stay. He pointed out that there was an association in Barcelona and that he couldn´t do much more to help me. That was it... Completely useless

 

[Jack V]

@HeavyMantra

Are you saying your tinnitus continued for as long as 5 months and then finally started to go away? I'm new to all this and trying to remain hopeful.

I mentioned something I read on the forum to one of my doctors and he was kind of dismissive of "the internet."

I don't think he realized just how good the information is on this site.

 

[Dhaych]

Have an appointment with my ENT in May... this post has put me off it. Especially knowing the cause... Noise-induced tinnitus.

 

[Jaka]

My ENT checked Ears Nose and Throath. Said that everything is fine, that he also has ringing ears and he does not give a damn. Suggested distractions to not focus on tinnitus.
No further diagnosis necessary.

 

[Mister Muso]

I've seen 2 ENTs, 2 audiologists and 4 family practitioners. Only one of the family practitioners was the slightest help.

 

[Maarryy123]

Same but worse, I travelled to the nearest big city, went to the ENT who completely screwed me, no steroids during that crucial window, the following visit a few weeks later, another ENT asked if I got injections, I said no, he shook his head sadly... gave me a massive bag of Zoloft and told me to sleep with a fan on. This forum is definitely my info source... would love to meet a caring ENT one day.

SAME!! After the onset of mine I quickly went in the morning to emergency care! There she was, that stupid ENT! I said I have tinnitus, maybe I can get some injections, she shook her head! No! Instead Ibuprofen and Sirdalud and that's it! I still hate her because I did what I had to! I at least tried! She didn't care at all!

 

[Kriszti]

Yes. I'm angry, because if I had been told in 2016 with my first bout of my recurring tinnitus that earbuds could cause this much trouble, I may not have ended up with the high frequency hell. I should have known better, I know, but back then it wasn't this bad, I didn't search the internet, and I trusted the ENTs and audiologists that they would provide me with sufficient info, because they are the professional experts after all. Big mistake, paying for it for the rest of my life.

This fall I had the misfortune to visit a very rude audiologist. Her problem was that I started with a private ENT who referred me into the public care for a hearing test with tinnitus and I wasted their time. She only said that my hearing was intact, didn't say a word about the very shallow tympanometry and the irregular reflex test. She managed to be so damn mean that this was the first time I actually considered killing myself. Yes, I was overly sensitive due to not sleeping at all for more than a week, and being in flight or fight mode, but I would expect a tiny bit more empathy from health care providers.

 

[AliasM]

An ENT should be barred (for life) from practising medicine if they perform unnecessary microsuction on a patient who obviously is articulating symptoms consistent with acoustic shock, tonic tensor tympani syndrome and hyperacusis.

Even though part their field of "expertise" is to do with the auditory system, most seem clearly unable to listen and comprehend what patients are telling them. How do they get through medical school without being able to listen?

Same goes for audiologists who conduct sound tolerance and tympanometry tests on said patients.

Old thread but yes... I saw an ENT last week, and explained I had tinnitus and pain hyperacusis. He insisted on microsuction of ear wax. I said no, due to what I had read on this forum. He assured me it was both safe and quiet. I felt a power imbalance and reluctantly agreed. He did my left ear and noise was shocking. I jumped off the table. My pain hyperacusis was only in my right ear and I did not let me near it. It has been 6 days now and I feel like I am developing hyperacusis in the left ear now.

I phoned the next day to inform them of my symptoms (pain, fluttering of the ear) and they assured me there is no way it would be from the microsuction. I said the pain and fluttering started within MINUTES of the procedure. They said not possible, it is a safe procedure and he does hundreds per year. End of conversation.

I am so angry and feel so used and abused. I paid $440 for that consult.

Then there is my GP. She assures me this will go away because she has never heard of it in someone my age with good hearing. She also said that to help me cope I should use headphones with loud music to cover it up.