Don't Read the Internet?

[Dubbyaman]

What do you say to people when they tell you not to read about tinnitus on the internet? My ENT told me that the internet is just a bunch of bull shit and to never listen. Funny thing is, I learned way more on here then what any doctor had to say. That's sad. He told me that the net was nonsense but I found out on here that holding a stethoscope to the neck is part of an examination on a patient with T to make sure that the noise can't be heard by the doctor. Something he didn't do by the way until I asked him to on the next appointment. Hmmmm the net is bull huh? Then hows come its telling me to tell you how to properly do your job??

 

[linearb]

I think it's generally useful to educate oneself up to a point, but it does seem like a lot of people end up ruminating more on their health problems as a result of spending lots of time online, whether those problems are tinnitus, or lyme disease, or benzo withdrawal, or anything else. Because the strength and nature of my own tinnitus are so heavily linked to various conscious and cognitive behaviors, I do believe that it's unwise for me to spend a huge amount of time reading about this -- especially when I come across one negative, catastrophic story after another. On the other hand, I am often inspired and reassured by positive, upbeat reactions to tinnitus.

There is, unquestionably, a lot of unscientific and potentially harmful information on this subject, as well. Most of the stuff in the alternative therapies forum here, and even the stuff in the Trobalt threads, makes me cringe.

 

[PaulBe]

I would suggest to your ENT, Dubbyaman, that he might benefit from a bit of a look on the Internet himself. Doctors hate it when you know more about your condition than they do. It erodes their sense of control (ownership?), and it makes billing you the full fee for them having no idea a little embarrassing for them (although never embarrassing enough for them not to do it).

 

[glynis]

Some internet info is good to search but if it's for medical reasons its ok to back up information you have been told or being diagnosed with.
We hear good things and things we wish we hadn't read .
Some people though should just think twice as don't know the person reading them who hold on to every word they read as gospel......lots of love glynis

 

[meeruf]

I think internet can be a good tool if your bullshit detector is intact.

I remember when I first got bad tinnitus, I surfed the Internet all day long about tinnitus. Looked for cures, answers, anything. I stumbled upon some really bad horror stories that scared the crap out of me, read about people wanting to do suicide, I even found an article about a guy who actually completed suicide. Would I end up like that guy..?

On the other hand, I found this forum who have helped me tremendously. Without this forum I would pretty much be on my own. But even this forum can be misleading, because most people who come here are in bad shape, and when they get better, they vanish and never tell the rest of their story. Making the illusion that tinnitus is a dead end. Which it's not!

So, use the Internet for all its worth. Just remember to be skeptical.

 

[t_burroughs]

Meeruf.. how do you deal with your tinnitus???

 

[Blackbird26]

It can be harmful in the way that it adds focus to your condition. However, sometimes one needs support.

 

[Dutchy]

That usually comes from older people that do not use the internet themselves,they think all
knowledge is only with those that studied the old way,you don't want to know how many times
i have proven people wrong by using OFFICIAL channels about certain data and it being legitimate.

People that actually are supposed to know ( line of work ) didn't even have the information
because their superiors didn't tell them yet.They're not accustomed to the digital information age.

 

[PaulBe]

Like everything else in this modern world, Medicine is being dumbed down to a tick-the-box criteria driven model. Independent, lateral thinking is being eroded under the groaning weight of what is deceptively called "best practice". It's the Medical version of what you in America know as "common core" education.

 

[Telis]

Would doctors not use the Internet for research purposes themselves at times? Seems a little strange to hop in your car and drive across town to go to the library to look something up.

 

[LadyDi]

Have to agree with @meeruf: the Internet can be a scary place if you don't have a spot-on bullshit detector. And even those who have such a detector are likely to find it disabled in the early days of tinnitus. Also, as others have suggested, consulting Dr Google can get you caught up in a loop of catastrophic thinking.

Having said, without the global online universe, I never would have found Tinnitus Talk -- a community for which I will be forever grateful.

But even TT is no substitute for a quality, real live medical professional. The idea that GOOD doctors don't want you to read the Internet because it threatens them is, in my opinion, bunk.

 

[Quentino]

Internet contains all informations and their contraries, so it's important to have a critical point of view and a capacity to evaluate them, especially about medical informations.

And sufferers have often not those abilities in first place! And it cause useless panic.

 

[glynis]

I find information useful on the internet but only from a real proven websites .like the NHS.BTA. Wikipedia etc.....lots of love glynis

 

[eldudebro]

I personally feel the internet can be both extremely helpful and extremely dangerous for a tinnitus sufferer.

Like just about everyone else on here when the T man came to town I quickly went into a meltdown and spent all my time online consuming every nugget of information relating to tinnitus I could find. Of course, a good lot of this contained stories of suicides, life-ruining depressions and never ending tales of things never getting any better. To someone already in a heightened state of alarm, this really doesn't help the situation. It's hard to find any encouragement when your mind is in that state.

As stated above, a good bullshit detector is pretty much required with tinnitus information on the internet. It's a source of a lot of misinformation and argumentative sufferers. I find this forum one of the better ones out there however sometimes there is a bit too much hostility on here.

I agree with the "Stay off the internet" advice to a point. It didn't help me at the beginning. It just exacerbated the situation. However I think to get a true understanding of tinnitus, you need to educate yourself on the condition. You certainly aren't going to that over here in the UK where tinnitus, in my experience, is sort of brushed over by doctors. I don't really blame them either, there's nothing they can do to alleviate the condition, so it's easier for them to push anti-depressants and "learn to live with it" advice onto you. I know that phrase gets a lot of hate around here, but for me that's pretty much what happened.

 

[erik]

Fortunately, everything I know about T, I learned on the internet.

Unfortunately, everything that freaked me out about T, gave me the worst anxiety, stress, sleepless nights and depression, I learned on the internet.

Fortunately, those that helped me the most (especially Tinnitus Talk) I found on the internet!

 

[Gr8fulDude]

What @erik and @linearb said.

 

[PaulBe]

The idea that GOOD doctors don't want you to read the Internet because it threatens them is, in my opinion, bunk.

Key word = Good. A Good Doctor understands how the Internet interacts with modern life and acts as a guide through the maze.

 

[I who love music]

Hmmmm ... I read the internet. More specifically, I read Tinnitus Talk, thank God, and learned how to squash my T.
https://www.tinnitustalk.com/threads/back-to-silence.7172/

 

[japongus]

Put it this way, where you gonna find real info, on pubmed or at your local village's ENT.

I would have though ashley madison had put the pathetic theories on the supremacy of the physical body over the eternal mind of the internet to rest by now, but it just keeps replicating itself Blade Runner style. They're like a bunch of necks at Wimbledon.

If you think TRT theorists online not being capable of agreeing on what misophonia applies to or ''how loud is too loud without incurring further cerebral damage'' is a poor show, try walking into the physical office of your country's translators of TRT to get told that they cure ''people so they can go loud places again without fear''.

 

[Contrast]

What do you say to people when they tell you not to read about tinnitus on the internet? My ENT told me that the internet is just a bunch of bull shit and to never listen. Funny thing is, I learned way more on here then what any doctor had to say. That's sad. He told me that the net was nonsense but I found out on here that holding a stethoscope to the neck is part of an examination on a patient with T to make sure that the noise can't be heard by the doctor. Something he didn't do by the way until I asked him to on the next appointment. Hmmmm the net is bull huh? Then hows come its telling me to tell you how to properly do your job??

My ENT told me cochlear hair cell regeneration is 100 years away

 

[dpdx]

I learned a lot on these forums. This forum is golden in terms of understanding and coping with T, also you know what tests to avoid,etc etc

 

[Snake]

My ENT told me cochlear hair cell regeneration is 100 years away

And another can tell you that it's 1000 years away

As my urologist (respected professor) say, it's medicine and you always can't be 100% sure. No one knows what future brings to medicine, just look at antibiotics. They were discovered by accident.

Maybe we will find out more about Tinnitus that takes place in the brain also by accident, for example by research on other diseases that take place in the brain and nervous system, and then it will speed up Tinnitus treatment research.

It's not mathematics, it's not black and white. You can't be sure that it will don't come tomorrow in some laboratory

And i'm a realist, not optimist. Just take care of yourself as much as you can to have enough strength to endure T and don't make it louder via loud noise / ototoxic meds etc. and maybe someday someone will finally help you, and us. That's my strategy.

 

[monkey legs]

And another can tell you that it's 1000 years away

As my urologist (respected professor) say, it's medicine and you always can't be 100% sure. No one knows what future brings to medicine, just look at antibiotics. They were discovered by accident.

Maybe we will find out more about Tinnitus that takes place in the brain also by accident, for example by research on other diseases that take place in the brain and nervous system, and then it will speed up Tinnitus treatment research.

It's not mathematics, it's not black and white. You can't be sure that it will don't come tomorrow in some laboratory

And i'm a realist, not optimist. Just take care of yourself as much as you can to have enough strength to endure T and don't make it louder via loud noise / ototoxic meds etc. and maybe someday someone will finally help you, and us. That's my strategy.

If i have learned anything recently, its that tommorow is not necessarily a reflection of today. Things can change so quickly in this life for good and bad.

Cheers.

 

[Starthrower]

I learned everything tinnitus via the internet dating back to 2002. First time I ever found or used support boards.

Good part: I learned what to expect and ask my doctors. I made friends.

Bad part: Spent way too much time back then and I somehow found myself drawn into the great tinnitus wars that went on. And on. And on.

Now I only spend an hour or two in the afternoon reading or responding on the board.

I close it all off at about 7:00 pm. No internet or cell phone usage. I relax my brain cells by reading or watching television. Then I find I can sleep much better.

 

[grate_biff]

My ENT told me cochlear hair cell regeneration is 100 years away

I take it he doesn´t have much confidence in the upcoming trials, then?
Why is that?

 

[MBH]

Doc we're no help, so without reading the internet I would not know what is going on with T. And know there are a lot of people with T and the other symptoms that go along with it. You have to read to inform yourself.

 

[jdjd09]

I take it he doesn´t have much confidence in the upcoming trials, then?
Why is that?

From my experience, what ents say about research is meaningless. They don't keep up with it mostly and just keep up with things that work NOW.