I Came from an ENT Doctor — Bad News :(

hey everybody

i was at a ear nose throat doctor today.

she said to me "there is nothing you can do unless retraining therapy"

i asked her about oto-311 and aut00063 and she said to me "trust me, there will never be drugs they can reduce a tinnitus. they bring many drugs on the market only to make money but it cant help"

what do you say to this?

are there official results of oto311 and aut00063?

sorry for bad news

 

Seeing as she knows the future can she give me the lottery numbers please?
Nobody can say anything for sure. The ear is still unconquered territory who knows what drugs will be successful in helping.

 

Hey Hoper,
Firstly, screw your doctor, this is exactly the kind of negative 'advise' they give that can really mess up your recovery & causes no end of anxiety/depression issues (I've been there) It's true that there's no miracle pill out there yet but really, that's stupidly cynical.
Everyone is different & everyone's T can also be different, thus there are many different techniques/remedies that will work for each individual case, problem is finding which one is for you is all ^_^
I've no idea on the official results on either but it's great to see them trying for a way to prevent/cure the T is it not? Until then, hang tight & keep positive <--- can't stress this enough, out with the bad & in with the good right?

 

On the basis of my own experience of ENTs and the experiences reported by other people on this forum, it seems fair to say that most ENTs do not have much interest in tinnitus and do not pay much attention to current developments in tinnitus research. At Medical School, they are taught that the only treatments which can be offered to T sufferers are masking devices and counselling/TRT. This may even be true at the present time but it will not remain true for long. Do not be disheartened by the pessimism of those who are not interested in progress.

 

I choose to believe that doctors say things like this so that people don't pin their hopes on a cure and delay the only possibility of recovery. The only effective thing you can do today is find a way to live with it and not let it bother you. You will have a hell of a time reaching that point if you spend hours upon hours searching for a pill that will make it stop.

 

This is my response to people who give out negative messages about tinnitus!

Tinnitus and the Nocebo Effect

 

ENT that i saw a week ago told me exactly the same thing.
There is no cure, there are no working treatments, no pills, no nothing.

CWI-therapy is the best there is: Cope With It.

 

Where there is research there is hope. The doctors that tell you there is no hope for the future, I call them cook book people. That goes for most professions. Chapter one; check patient, chapter two; diagnostic tests. Chapter three; I do not know what to do. Hang in there. most forget about the chapter on COMPASSION. Life will offer its obstacle. You will and can adjust to the 'T'! Takes time. Hang in there.

 

http://www.tinnitus.org.uk/research

I thus expect that the puzzle of how tinnitus arises will be solved within the next decade, and that this will lead to true targeted tinnitus treatments.

 

Hey Hoper,
You have to try to calm down. I know it is such a hard situation but try to stay positive and not to worry too much. I promise it will get better and easier with time. I think it is rather good that the ENT was pretty honest with you, at the moment there is basically nothing you can do against your tinnitus and I would suggest not to go see doctor after doctor at the moment because they can't really help you but they will rather be a downer for you. Plus it will be a constant reminder of your Tinnutus and you really need to take your mind off it.
When it comes to the future I don't think anyone can predict if it if not there will be a treatment or cure that actually works so we will have to wait and see.

Also versuch am besten ruhig zu bleiben und sich so gut es geht abzulenken. Nachdem du physisch alles abgeklärt hat und du soweit keine Auffälligkeiten hast musst du versuchen den tinnitus zu akzeptieren und in den hintergrund rutschen zu lassen, wie gesagt es wird einfacher mit der Zeit. Wenn es in den nächsten Jahren ein wirksames Medikament o.ä. gibt dann wirst du das mitbekommen und wenn nicht dann hast du dich bis dato ganz sicher an den T gewöhnt sodass er kaum störend ist oder er wird von selbst verschwinden.

 

Doesn't it depend on the cause? If your T is not noise-induced but has a physical cause (infection, fluid in the wrong place, jaw bone misaligned...) then there is something you can do, or at least try. Or am I misinformed?

Saying that "there'll never be a cure and companies are only in it for the money" is just cynical and wrong. There's little hope, but that's still different from 'no hope'. It's a slap in the face of the people who actually are trying to find a cure.

I'm not sure if it happened in this case, but I just hate it when people -not only medical specialists- give you the 'deal with it' treatment. No compassion, understanding, sympathy, information, help or an attempt at any of these. Just an F-U and you're supposed to appreciate it. A couple of kind words can make all the difference, even though the physical world hasn't changed.

 

What crap..nobody can say for sure what's in for us in the future..agreed tinnitus is a weird and mysterious condition but realise that there is research going on for this like never before and all these efforts will atleast develop something to reduce the volume if not cure it. Tinnitus is a hot topic in the military as well these days so I am sure they will do something about it . Don't believe your doctor, 10-15 years from now working treatments will be available that will work differently for everybody but we won't be as helpless as we are now that's for sure. Researchers are working hard to understand this and find a solution do you really think all this curiosity and experiments will bring absolutely nothing ??

 

The ENT really meant, "There is nothing I can do." He didn't want to say that, so pretended he was everybody in the world ever.

 

Maybe, but it's still wrong.

In my experience, people often make up all kinds of stuff rather than saying that they don't know or can't do something. Even when their fabrications are actually more harmful than the truth.

I have a feeling it's because of our educational system that trains us to think that mistakes and not-knowing are bad and stupid. While in reality, if you're going to try something (especially something new), mistakes are part of the learning process, can hardly be avoided and don't always have to be harmful.
When you don't know something, saying so is actually the best thing you can do. If you can, follow up by saying "But I'll look into it and I'll let you know when I've got more information."

 

Bad news... sorry for you, I know what it is...

But at least your END is honest.
Tinnitus is in most cases chronical and will never disapear.

My END gave me false hope, and that was not good, because the hope has exhausted me.

So like me, I think the best thing you can do is read the success stories over here and try to keep faith that there will be a time you can cope with the T.

I am not that far... it's hard, but many people make really quick progress.

Wish you all the best,
Gabrielle

 

If tinnitus will never be curable, then how do we explain retigabine curing Mpt? If tinnitus can be aggravated and get quieter, then there is something that can manipulate it. And if that's possible, then an effective treatment is possible.

 

It's hard to predict what the future will hold. To someone from 500 years ago, microwaves and smart phones would appear to be nothing short of magic.

 

You don't even have to go that far back. A smartphone would be pure science fiction to someone in the 80's

 

I recall the following words of wisdom from one ENT I saw a while back...

"Aim to get through the day, today, do the same tomorrow, and the next 50 years will take care of themselves."

...makes anybody feel so good. Instantly.

It has to be said that in the year 2014, the best way to stay healthy, is to not get sick in the first place. Sure as hell don't count on your doc to help you out with anything more complicated than an ingrown toenail. And that's pushin' it...

 

When I was first diagnosed, my PCP told me "we usually prescribe Xanax and tell people to turn up the radio". Then he laughed.

 

My audiologist told me that he worked at a VA hospital and he knew that some of the patients who had severe T who committed suicide. He demonstrated this by simulating with this fingers shooting himself in in the head with a gun. I am NOT kidding you! This REALLY happened!

This is when I first had loud T and at my wits end.

 

This is largely why I am an advocate of habituation, so that hopefully we can get to a point where it doesn't matter whether there is a cure or not...

That said though, there is no way the ENT could know whether a cure or effective treatment is impossible. For him to know that, he'd have to know everything there is to know about how the brain and ear relate to tinnitus, and know for certain that it wouldn't be possible to cure. It's really unfortunate that he said that.

The fact that some people have gotten relief from certain drugs proves that tinnitus can be treated in some cases and even cured. That right there should put a rest to the "naysayers" of a possible cure. Plus, we're fairly certain in most cases, tinnitus is associated with hearing loss. So unless someone is ready to say hearing loss will never be cured, then he cannot say tinnitus will never be cured. There might not be a universal cure, but to say there will never be cures is ridiculous.

 

Oh, consider yourself lucky you didn't get: I will never go away and as a matter of fact some people with tinnitus commit suicide!!!
....that was my first ENT visit

 

It sort of makes you wonder what exactly goes through their mind or what their motivation is for saying such things. But quite honestly, a common response on this board that I think is just as frustrating and useless is, "Give it time". As if that is supposed to be of any comfort. Time doesn't do jack. It's what we do in that time that make the difference. Otherwise, we could end up like those who've had tinnitus for decades and are still suffering.

 

thankyou Julian for posting that very helpful and positive video. fantastic and very encouraging

 

You expected good news? I think I blanked out when I saw the ENT. She said something about some people living with tinnitus and some not. I was standing and ready to leave before she was finished talking as she had nothing to tell me except that I had tinnitus. Wow..thanks

 

That is kind of creepy what he said. Shocked he would say that. But it is true about the suicide though. That is why your are asked questions like the ones I answered.

 

Every ENT is going to tell you they cant help you. It just depends on their so called bed side manner. Mine told me if he had a cure he would be rich. Also, their are tons of trial drugs that end up going nowhere. Or they can be used to boost stock prices. Or the drug may end up having another use.

 

Yes, I think someone that is not noice induced has a much, much, much better chance. Or if is is from something in your ear that a doctor can acually get to like the outer or middle ear. As I understand it, the inner ear is sealed inside the most dence bone in your body.

 

My doctor was compassionate, patient and always gave me hope. He saved my life. I did TRT noise generators in 2002. Before I started I had no hope. TRT worked for me. Have faith.