A Little Perspective

[Dr. Ancill]

I have had tinnitus for almost 2 years. Mine is likely related to aging and age-related hearing loss and at the moment, I am having a bit of a hard time with it. However, I am also a doctor and treat people with far worse medical conditions and actual physical disabilities who remain cheerful and optimistic, sometimes in the face of a diagnosis of a terminal condition. All I have is tinnitus. I do not want to diminish in any way the suffering of persons with tinnitus but sometimes it helps to put it in perspective..... at least it does for me!

 

[Mad maggot]

That is very true. And we need perspective. If we give in then we have no hope and without hope we have nothing.
But also you must take into account the personality of the patients and certain types don't cope as well with certain problems. There may be all kinds of reasons for that - perhaps they are even coping with other maladies or stress so that the T becomes the straw that broke the camel.
Personally I feel I cope extremely well because if I had T alone I wouldn't probably bother about it as much. But my T (if in fact it can be termed as T) causes my head to vibrate and my vision to shake to the point I cannot walk and fall down. I'm unable to even get to the toilet and I begin vomiting as it escalates into violent vertigo at its worst. Then I can't say I cope so very well!
So obviously there are other things happening in my head other than the T. We cannot tell what is happening inside a person and how their emotions are involved or why they are involved. It might seem to us who are managing bravely that others are being wimpy. But everyone - even perceived wimps need empathy and also to be given the benefit of the doubt as we cannot measure someone else's pain or T

 

[billie48]

Thank you Dr. Ancill for the perspective. A major part of the tinnitus battle is mental. We need to play a smart mental game with T in order to come out on top. One of the things I used to do while still struggling was constantly minimizing T, by comparing it to blindless, to people on wheelchair or being bedridden or stricken with chronic pain, terminal illnesses etc. The more we do this, the more the brain will surely fall in line with our effort to put less attention to T, and with that, we can begin to move on to habituation when the brain begins to not consider T as a threat.

 

[BrStan@]

How about comparing with people around you who are happy and healthy(friends, colleagues and family). This is the hardest part they are talking about going for a holidays, careers development and about enjoying the life. And i am stuck with this noise in my head thinking how i am going to make it today, how todays day is going to pass?

 

[Zechariah]

Wow, well this was kind of typical view of a doctor which most T sufferers have to face in the early stages of T...

There was a time when I'd happily cut of my arm to get rid of my T. There is some people who would do it even after several months. There is is different levels of T as there is different levels of disabilities. Even though T isn't a "actual physical disability" it doesn't mean that it is less painfull than a physical disability.

This reminds me of an old sarcastic quote/slogan "It couldn't hurt if you don't bleed".

EDIT: And btw, when I got my T and I was devastated, I kept the good spirit up at the doctors appoitment with the last drops of my energy pool and pretty much collapsed to tears every time I had left the hospital and gotten inside my car. I kept it all inside - maybe because I'm a stubborn finnish man but the doctors had no clue how hard time I was having if they didn't take my word on it. I'm pretty bad at showing feelings to strangers so I may have looked like a "cheerful" or "optimistic" patient.

 

[Danny Boy]

I have had tinnitus for almost 2 years. Mine is likely related to aging and age-related hearing loss and at the moment, I am having a bit of a hard time with it. However, I am also a doctor and treat people with far worse medical conditions and actual physical disabilities who remain cheerful and optimistic, sometimes in the face of a diagnosis of a terminal condition. All I have is tinnitus. I do not want to diminish in any way the suffering of persons with tinnitus but sometimes it helps to put it in perspective..... at least it does for me!

Well, I'm sorry, but people kill themselves over tinnitus because of how loud it can be. Couple that with hyperacusis, reactive tinnitus and you have a recipe for disaster. I'm glad you don't have it that bad, but you need to understand, some people honestly want to die, they even apply for assisted suicide to be turned down. And to be honest, if I didn't take trobalt or keppra, I personally would've taken a bullet if we had guns in the UK. I would've ended it right there and then. But luckily, I survived because of tinnitus talk. But let me tell you, the months I had those things, it was worth than anything I ever came across there was no escape.

No doctor would treat me, no doctor would help me. I was alone, because there is no licensed treatment for tinnitus, just off label things that you couldn't get...I was lucky in that people on here helped me get what I wanted. It was that kindness that I cherished. The medical world never helped me at all and I won't ever forgive that.

 

[Mad maggot]

How about comparing with people around you who are happy and healthy(friends, colleagues and family). This is the hardest part they are talking about going for a holidays, careers development and about enjoying the life. And i am stuck with this noise in my head thinking how i am going to make it today, how todays day is going to pass?

Instead look at those people and think how happy you are for them that they don't have this. And also look at what you are still accomplishing despite having this and how amazing you are to keep going! If they could live in your shoes for one day they'd all be saying: "this guys a legend!" I think everyone thinks that negative way at first and from time to time still do. But it doesn't help you to keep going. It only drags you down. Don't allow yourself to go there too much as it doesn't benefit you. You need to be kind to yourself and not beat yourself up.

 

[Mad maggot]

Well, I'm sorry, but people kill themselves over tinnitus because of how loud it can be. Couple that with hyperacusis, reactive tinnitus and you have a recipe for disaster. I'm glad you don't have it that bad, but you need to understand, some people honestly want to die, they even apply for assisted suicide to be turned down. And to be honest, if I didn't take trobalt or keppra, I personally would've taken a bullet if we had guns in the UK. I would've ended it right there and then. But luckily, I survived because of tinnitus talk. But let me tell you, the months I had those things, it was worth than anything I ever came across there was no escape.

No doctor would treat me, no doctor would help me. I was alone, because there is no licensed treatment for tinnitus, just off label things that you couldn't get...I was lucky in that people on here helped me get what I wanted. It was that kindness that I cherished. The medical world never helped me at all and I won't ever forgive that.

Sad but true

 

[PaulBe]

And btw, when I got my T and I was devastated, I kept the good spirit up at the doctors appoitment with the last drops of my energy pool and pretty much collapsed to tears every time I had left the hospital and gotten inside my car. I kept it all inside - maybe because I'm a stubborn finnish man but the doctors had no clue how hard time I was having if they didn't take my word on it. I'm pretty bad at showing feelings to strangers so I may have looked like a "cheerful" or "optimistic" patient.

If you don't bleed out or overdose before their eyes or something, they don't take you seriously. If you don't look to be not coping they assume that you are and they lose interest....very fast. If I was starting again I would certainly NEVER say I had tinnitus associated with DST. Tinnitus is a symptom, with many causes but most just want you out as soon as you utter the T word. I would couch my description in any words that avoided saying Tinnitus. If they asked I would lie and say no I don't have it.

 

[Mad maggot]

If you don't bleed out or overdose before their eyes or something, they don't take you seriously. If you don't look to be not coping they assume that you are and they lose interest....very fast. If I was starting again I would certainly NEVER say I had tinnitus associated with DST. Tinnitus is a symptom, with many causes but most just want you out as soon as you utter the T word. I would couch my description in any words that avoided saying Tinnitus. If they asked I would lie and say no I don't have it.

However you cannot win. If you act brave and cheerful they say you have not got a severe problem. But if you show them you are upset and being affected badly they will say you are suffering with stress and it's all in your head. So round and round and round you go and where it will stop nobody knows!

 

[Dr. Ancill]

I did say that I would not diminish the suffering of others but I still stand nu the use of perspective as a helpful technique for some. Those who feel suicidal or desperate need psychiatric intervention bur I understand that can also be difficult.

 

[Zechariah]

I did say that I would not diminish the suffering of others but I still stand nu the use of perspective as a helpful technique for some. Those who feel suicidal or desperate need psychiatric intervention bur I understand that can also be difficult.

Well you didn't give any perspective. You just made the problem with doctors more obvious.

At least if you have some "actual physical disability" there is much greater change that there is an effective treatment or maybe the pain will go away or can be suppressed somehow. That gives people hope and a way to deal with things but if you are T sufferer there is nothing like that. There is no off-switch, it is constantly there every time when you try to sleep etc.

But considering your view, I'd like to congratulate you. Apparently you haven't had severe tinnitus or you have forgotten it since you can say things that you said in original messages (and same goes to ppl who rated your message "agree" etc.)

But please, when you see your next tinnitus patient. Don't tell him/her that "there is people with actual physical disabilities so that should give you some perspective". It will make him/her feel much worse.

 

[Sound Wave]

I agree. There are soooo many worse conditions than T and many people who suffer from them, have still overcome them and enjoy life. Take for example people who are 100% paralyzed or who suffer from chronic constant pain.

 

[Dr. Ancill]

Putting your anger with 'doctors' to one side - when my patients are getting overwhelmed with tinnitus, perspective can be useful in assisting them to cope. Clearly, this is only a small part of the overall 'treatment' package which may include sleep medications, dealing with anxiety and depression and sound retraining. To those who think my tinnitus is trivial - it isn't and shame on those who belittle the suffering of others and believe only they can truly know misery. However, we all have to cope the best we can and this is a support forum - if perspective works for some people, great. If it doesn't, they are no worse off!! Many of the ideas I have seen on this forum range from the helpful to the downright ridiculous (occasionally) - but they are well meant and we should never discourage anyone from trying to help.

 

[Atlantis]

I think perspective is a good thing. @Dr. Ancill provides a good point.

Would anyone really prefer a deteriorative neurological condition such as multiple sclerosis, amyotrophic lateral sclerosis or parkinson's disease over tinnitus?

I'm battling this demonic condition we call tinnitus but I'd still pick it over any of the above.

 

[PaulBe]

Would anyone really prefer a deteriorative neurological condition such as multiple sclerosis, amyotrophic lateral sclerosis or parkinson's disease over tinnitus?

At least you'd get Specialists that take you seriously, and would make some effort at eliminating differential diagnoses.

 

[Xorthian]

I have had tinnitus for almost 2 years. Mine is likely related to aging and age-related hearing loss and at the moment, I am having a bit of a hard time with it. However, I am also a doctor and treat people with far worse medical conditions and actual physical disabilities who remain cheerful and optimistic, sometimes in the face of a diagnosis of a terminal condition. All I have is tinnitus. I do not want to diminish in any way the suffering of persons with tinnitus but sometimes it helps to put it in perspective..... at least it does for me!

Depends on person right?
Some have higher suffering threshold. So even with two theoretical people of similiar noise level and signal reactions will differ.

My method to cope is saying to myself that there are still good moments in my life and that it could be much worse like for some people. Personally i never reacted at all to "there are serious illnesses people deal with better" because frankly i dont care about other people unless i decide to care about them ( i care about tinnitus talk users but i dont give a crap about single person with cancer unless they are my family).

There is going to be some hostility because you have dr title and some people cant think of you as a person they only see what they went through with doctors there is also legend on those forums that if someone can deal with tinnitus fine or mostly fine he have it very mild and probably can only hear it in quiet rooms at night which is baffling to say the least.

I hope you will find forums pleasant and helpful in dealing with your own tinnitus. Maybe you could introduce yourself in introductions forum? Say how loud it is, how it affected your life, how you started to cope. Im interested in that very much

Sorry for broken english today but i baely slept went to ultra quiet house in village where my gf is from so it was hard to sleep with all 3-4 of sounds in my head )))

 

[ruben ruiz]

There is a downplaying of Tinnitus here. I'm not comparing it to cancer or the sort but chronic T can wear out your body to the point of heart problems, liver and kidney problems and major degeneration of the brain. T is not a whimsy problem, it can get more serious as time goes by. 22 suicides per day from serviceman who fought over seas. Most of them have chronic T. This is serious. I get upset when people downplay the T. Like my brother says to me, how can it be so bad, the buzzing hissing sound you just take a pill and your fine. Ya right! The levels of T are varied just as cancer is.

I wish only good things for my friends with T. They are my new family. My old family doesn't understand me. They also don't understand that there is no cure for the buzzing and hissing. That there are times when there is no peace only anxiety and depression. They cant walk in my shoes.
I played guitar since I was a wee lad. Now my greatest asset is gone, the sound hurts too much.

 

[MattK]

Well, I'm sorry, but people kill themselves over tinnitus because of how loud it can be.

People commit suicide for all kinds of reasons, Danny. Some people commit suicide because of loss of relationships. Some people commit suicide because they weren't selected for the job, or didn't get accepted into the University they wanted to study at. And some people commit suicide for apparently no reason at all, or at least none known to anyone but themselves. Basically that people commit suicide over T isn't exactly an indicator for how bad T is, anymore than people commit suicide over a break-up is an indicator for how bad break ups are.

Couple that with hyperacusis...

This is where I am not seeing you eye-to-eye. Hyperacusis isn't T. It's an entirely different beast... from what I read, to me it sounds like a much worse beast than T. H would absolutely drive me insane and I don't think I could habituate to it based on what people describe. But, the point is the OP is talking about T, not T + H or T + anything else.

I almost think there should be a separate section, one for people with T and one for people who have T + other ear disorders. I know in the past I've given reasons why I think people can habituate to T and I ended up with a lot of responses like, "Do you know how it is to have T + H or whatever else" and the answer is, no I don't. But I wasn't talking about T + anything else, I was talking about just T. I don't even pretend to know what it is like to have H or anything other than T.

 

[PaulBe]

This is where I am not seeing you eye-to-eye. Hyperacusis isn't T. It's an entirely different beast... from what I read, to me it sounds like a much worse beast than T. H would absolutely drive me insane and I don't think I could habituate to it based on what people describe. But, the point is the OP is talking about T, not T + H or T + anything else.

Welcome to our world MattK. We are already marginalized by Medicine as it is. Once they hear the word "Tinnitus" they tend to wash their hands of you, regardless of what else you may want to communicate, that's on the rare occasion that they've even heard of hyperacusis, or are even capable (as in empathy) of understanding just what decreased sound tolerances can do to your life. Everyone just talks about T.

 

[snow86]

People commit suicide for all kinds of reasons, Danny. Some people commit suicide because of loss of relationships. Some people commit suicide because they weren't selected for the job, or didn't get accepted into the University they wanted to study at. And some people commit suicide for apparently no reason at all, or at least none known to anyone but themselves. Basically that people commit suicide over T isn't exactly an indicator for how bad T is, anymore than people commit suicide over a break-up is an indicator for how bad break ups are.

Im sorry but I respectfully disagree!
You go around this board and always preachin that T alone ain't bad and that you're some kind of habituation hero. Oh please.
But as someone already said, theres tinnitus and theres TINNITUS.
You are in the milder category. What about some people on this board (like) me who have several monster sounds that are louder than a washing machine?
And you say H sounds like much worse beast than T? Thats because you haven't had a beast T. Good for you, Matt!

"Basically that people commit suicide over T isn't exactly an indicator for how bad T is, anymore than people commit suicide over a break-up is an indicator for how bad break ups are"

You have so no f***** idea how it is to have such extreme T, which makes you think about that every day.
Such statements just piss me off.


I dont know why I always react to such posts. Some people just won't get it.

 

[dan]

Im sorry but I respectfully disagree!
You go around this board and always preachin that T alone ain't bad and that you're some kind of habituation hero. Oh please.
But as someone already said, theres tinnitus and theres TINNITUS.
You are in the milder category. What about some people on this board (like) me who have several monster sounds that are louder than a washing machine?
And you say H sounds like much worse beast than T? Thats because you haven't had a beast T. Good for you, Matt!

"Basically that people commit suicide over T isn't exactly an indicator for how bad T is, anymore than people commit suicide over a break-up is an indicator for how bad break ups are"

You have so no f***** idea how it is to have such extreme T, which makes you think about that every day.
Such statements just piss me off.


I dont know why I always react to such posts. Some people just won't get it.

I totally agree with you Snow.

 

[MattK]

Everyone just talks about T.

Well, it's not that I'm unwilling to talk about H, but I don't have it and don't have first hand experience with it. So I can't really relate with it directly, other than to say, "That sounds like a nightmare".... and I mean, that. It really does.

That's why I was saying that perhaps there should be a section with people who have T + something else. See, it's hard to talk about T when people bring up more than T. It would be like if I said, "Here is how I coped with having cancer" and someone else came up and said, "Well, you don't know what it's like to have cancer PLUS being an amputee" or something. It wouldn't be a fair comparison. Hopefully you see what I'm trying to say.

 

[MattK]

I totally agree with you Snow.

You know Dan, I'm not going to start an argument because I want to honor the boards strict policies as I think they are for the better. So I'm backing off. But I'll just say in one of your posts you made a few weeks back, you pretty much said it all. It really shed light on your situation.

 

[tinnitussufferer]

take trobalt or keppra,

does kapra cure the noise? how long does it last?

 

[Danny Boy]

People commit suicide for all kinds of reasons, Danny. Some people commit suicide because of loss of relationships. Some people commit suicide because they weren't selected for the job, or didn't get accepted into the University they wanted to study at. And some people commit suicide for apparently no reason at all, or at least none known to anyone but themselves. Basically that people commit suicide over T isn't exactly an indicator for how bad T is, anymore than people commit suicide over a break-up is an indicator for how bad break ups are.



This is where I am not seeing you eye-to-eye. Hyperacusis isn't T. It's an entirely different beast... from what I read, to me it sounds like a much worse beast than T. H would absolutely drive me insane and I don't think I could habituate to it based on what people describe. But, the point is the OP is talking about T, not T + H or T + anything else.

I almost think there should be a separate section, one for people with T and one for people who have T + other ear disorders. I know in the past I've given reasons why I think people can habituate to T and I ended up with a lot of responses like, "Do you know how it is to have T + H or whatever else" and the answer is, no I don't. But I wasn't talking about T + anything else, I was talking about just T. I don't even pretend to know what it is like to have H or anything other than T.

I've had them all buddy, so I would know best what's it's like. I went out there and sorted it out myself. Plus, if you had super loud tinnitus you'd understand.

 

[Danny Boy]

does kapra cure the noise? how long does it last?

Keppra is for hyperacusis and trobalt is for tinnitus. Hope that helps.

 

[Gosia]

I often wonder ... how come it's so difficult for people to understand what T is..and as long as I can understand that sb who's not experiencing it may find it difficult , when it's a T sufferer himself doesn't get that it really depends on how intrusive and severe it is..it just p..annoys me. What does it take to explain to everyone that T has its levels ? From the moment I learnt about it it was obvious for me that it can get so damn intense there is just no way of habituating, as simple as that. That it can be so overwhelming it doesn't matter anymore if one doesn't have any terminal disease or more, he wishes he had one just to dissapear , like Gaby ? Yeah, the moment I learnt that I definitely put things into perspective - I'm 'glad' as much as I can still be that my sounds are not THAT intrusive. What bothers me the most in this kind of statement is the underlying suggestion that the one who doesn't deal well with tinnitus can only blame himself. The least the people with extreme T deserve is recognition of their suffering and respect. They're not just gloom and have not chosen to stay in their misery. Just take 50% of their sound level off and watch how fast their perspective changes ! Not to mention this kind of talking stabilises the image of this debilitating misfortune as sth everyone can easily live and work with, because maybe the majority can, and forbids from those few who really can't ( just because their T is SO overwhelming and NOT because they didn't put things into perspective enough ) from having their disability acknowledged and being help by the state when they lose their job because of T.
P.S. I've read many times about people who had different health problems aprat from t, including cancer, and who claimed that T was by far the worst thing they had to deal with. So there's that. I totally agree that doctors often just don't know a crap wbout how their patients really do. I myself am always smiling and cheerful when visiting one, no matter how broken inside I am.

 

[Dr. Ancill]

I completely agree that (most) doctors don't know anything about tinnitus but that is largely because there is no 'cure' so they feel helpless anyway. What they should know however, but also don't, is what everyone on this Board talks about - the depression, the feeling of being overwhelmed, the loss of enjoyment, etc..

As I have clearly said in an earlier reply, perspective is just one element in the overall treatment package and what works for one person may not work for another. Given the current state of knowledge and treatment options, we need to remain optimistic and hopeful that some combination of what is suggested offers some relief, to some people, some of the time.

 

[valeri]

Somebody please name another condition where people are told to go home and live/suffer with it with no help whatsoever???