Drop the Word ‘Negativity’ Once and for All

[Michael Leigh]

listened to doctors and audiologists that have absolutely no clue about tinnitus in a practical sense

It is for this reason I have no interest in tinnitus seminars, conferences or the like, because most of them are hosted by medical professionals that have no experience of tinnitus. I respect their medical qualifications and the fact they are physicians, which enables them to treat underlying medical problems associated with the auditory system. However, unless they have experience of tinnitus and I don't mean "mild" tinnitus; severe and intrusive tinnitus, then they cannot begin to understand the condition and how it can seriously affect a person's mental and emotional wellbeing.

Michael

 

[JohnAdams]

However, unless they have experience of tinnitus and I don't mean "mild" tinnitus; severe and intrusive tinnitus, then they cannot begin to understand the condition and how it can seriously affect a person's mental and emotional wellbeing.

I would say that they could have an informed understanding of our situation if they have had other types of debilitating health issues, not necessarily just tinnitus, but yeah having tinnitus seems to be the gold standard for knowing what it's like to have tinnitus.

 

[Michael Leigh]

I would say that they could have an informed understanding of our situation if they have had other types of debilitating health issues, not necessarily just tinnitus, but yeah having tinnitus seems to be the gold standard for knowing what it's like to have tinnitus.

@JohnAdams

You make a valid and interesting point and I would like to pick up on a comment in your post: "Could" indeed, they could have an informed understanding but this seems too often not to be the case. Just peruse some of the many posts in this forum, where members say: "My ENT doctor doesn't understand what I'm going through". "I was told, nothing can be done learn to live with it". One member told me her ENT doctor said: "What do you expect me to do I am not god". She burst into tears.

At the very least some of these doctors need to improve their bedside manner and show some understanding to what a person is going through when complaining about their tinnitus. Not all doctors behave this way thank goodness.

Michael

 

[eagerUser]

Just to add my 2 cents, @Michael Leigh is absolutely right when he says headphones are dangerous. For example working at a call center talking 8h a day with the phone will definitely have its hazardous effects on your hearing and that's the same as using headphones. I don't understand why one should use headphones.

 

[Michael Leigh]

Just to add my 2 cents, @Michael Leigh is absolutely right when he says headphones are dangerous. For example working at a call center talking 8h a day with the phone will definitely have its hazardous effects on your hearing and that's the same as using headphones. I don't understand why one should use headphones.

@eagerUser

I have been vilified, ridiculed, abused and laughed at by people that don't believe headphone use even at low volume can make tinnitus worse for some people that have "Noise induced" tinnitus. Some of these people have contacted me and apologised for their remarks having followed the advice of their ENT doctor or Audiologist and noticed their tinnitus increased and will not reduce to previous baseline level.

I have had this condition for many years and corresponded and counselled people with NIT. This is how I have gained my experience. I do not know everything about noise induced tinnitus (no-one can) and therefore I am always willing to learn more. Some people with NIT, when told by their: ENT doctor, Audiologist or Hearing Therapist that headphone use is fine as long as the volume is kept low believe it. Why wouldn't they as these people are supposed be medical health professionals and know all about tinnitus? Sadly, this is not the case as I have mentioned in my previous post on this thread. They are medical professionals who know about the anatomy of the Ear but few of them really know about tinnitus and how or what can affect the condition. Just read @HeavyMantra post, and the truth is right there. I have said before and will keep on saying: Science has very little to do with tinnitus.

All the best eagerUser.
Michael

 

[eagerUser]

@eagerUser

I have been vilified, ridiculed, abused and laughed at by people that don't believe headphone use even at low volume can make tinnitus worse for some people that have "Noise induced" tinnitus. Some of these people have contacted me and apologised for their remarks having followed the advice of their ENT doctor or Audiologist and noticed their tinnitus increased and will not reduce to previous baseline level.

I have had this condition for many years and corresponded and counselled people with NIT. This is how I have gained my experience. I do not know everything about noise induced tinnitus (no-one can) and therefore I am always willing to learn more. Some people with NIT, when told by their: ENT doctor, Audiologist or Hearing Therapist that headphone use is fine as long as the volume is kept low believe it. Why wouldn't they as these people are supposed be medical health professionals and know all about tinnitus? Sadly, this is not the case as I have mentioned in my previous post on this thread. They are medical professionals who know about the anatomy of the Ear but few of them really know about tinnitus and how or what can affect the condition. Just read @HeavyMantra post, and the truth is right there. I have said before and will keep on saying: Science has very little to do with tinnitus.

All the best eagerUser.
Michael

We still know nothing about tinnitus @Michael Leigh
So saying headphones cause hearing disorder can't be dismissed because no one can scientifically prove the opposite. So better safe than sorry. Not just tinnitus but they can also cause ASD. Sometimes you won't even understand how loud the noise is.
But those who are ok with headphones I literally hope they don't cause more damage. I may not be correct about headphones but as I said better safe than sorry.

 

[PeteJ]

She's not the worst medic I've encountered on my tinnitus journey. One ENT doc told me my tinnitus couldn't be noise-induced because the only way that can happen is if you are exposed to something like standing next to a landmine when it goes off. And he calls himself a tinnitus specialist!

The audiologist meant well, and she says she has tinnitus too. But when she said she can only hear it in a quiet room, I realised that she had no idea what I go through, or how to help me.

Yep. They get paid a lot of money but don't know anything and don't help people.

 

[JohnAdams]

We still know nothing about tinnitus

We know a little more than nothing.

 

[Michael Leigh]

We still know nothing about tinnitus @Michael Leigh
So saying headphones cause hearing disorder can't be dismissed because no one can scientifically prove the opposite. So better safe than sorry. Not just tinnitus but they can also cause ASD. Sometimes you won't even understand how loud the noise is.
But those who are ok with headphones I literally hope they don't cause more damage. I may not be correct about headphones but as I said better safe than sorry.

I agree with you @eagerUser but again that old adage Scientifically proven, I have my doubts on that one. This is where personal experience of having noise induced tinnitus and corresponding with people with the condition trumps science. I have also said: Not everyone with NIT will be affected by headphone use but many are. It is a risk and as HeavyMantra has said, if he had stopped using headphones his tinnitus would have remained low. Unfortunately he listened to wrong advice given by people that do not know better.

Michael

 

[eagerUser]

We know a little more than nothing.

I know what you mean John. Scientists have turned off tinnitus in some animals, there also is bimodal stimulation. regenerative drugs, but by nothing I mean we don't know for sure what makes tinnitus worse.

 

[eagerUser]

I agree with you @eagerUser but again that old adage Scientifically proven, I have my doubts on that one. This is where personal experience of having noise induced tinnitus and corresponding with people with the condition trumps science. I have also said: Not everyone with NIT will be affected by headphone use but many are. It is a risk and as HeavyMantra has said, if he had stopped using headphones his tinnitus would have remained low. Unfortunately he listened to wrong advice given by people that do not know better.

Michael

I hear you @Michael Leigh
As I said we shouldn't risk it anyway. It's not worth it even if there is a 0.001 % chance of making tinnitus worse.

Personally, I have never been a fan of headphones so for me not using them is not a big deal.

 

[Michael Leigh]

I hear you @Michael Leigh
As I said we shouldn't risk it anyway. It's not worth it even if there is a 0.001 % chance of making tinnitus worse.

Personally, I have never been a fan of headphones so for me not using them is not a big deal.

I understand that it can be difficult for people to with "Noise induced" tinnitus to stop using headphones and will explain. I am an Audiophile and used to listen to music a lot through High-End headphones that eventually gave me tinnitus, because I listened at too high a volume without realizing it. That was 23 years ago and haven't used headphones since.

A member of this forum contacted me shortly before last Christmas. She had noise induced tinnitus and habituated for 6 years, the tinnitus was low. She loved her job going out and life was good. She decided to return to using headphones and kept the volume low. Within one week the tinnitus increased to such a high level that she is unable to return to work.

All the best
Michael

 

[Star64]

Just stop scolding people for expressing their sadness.

I believe this statement to be the most important that I have read on this support forum. However, I do understand maybe some people are sensitive and new members might be scared away from reading that tinnitus can send you to a very dark place. Maybe a section should be made for people on Tinnitus Talk to gain support that have reached total despair that states a trigger warning, noting that in this section some content maybe distressing to read and to avoid reading it if you are sensitive.

@linearb Glad you find Metta meditation practice useful, and you are correct it is a process and it does not happen over night.

"Metta is a Pali word that means goodwill, lovingkindness, friendliness, benevolence, non-hatred, non-anger, and non-resentment. Metta meditation is very helpful in checking the unwholesome tendency to hatred and anger in us and promoting and strengthening the wholesome states of non-hatred, non-anger, non-resentment, patience, tolerance, calmness, coolness, goodwill, lovingkindness, benevolence and friendliness.

If we all practiced a little Metta in our lives maybe we could be more understanding towards the people that really struggle on this site, because they are the people that need the support the most

 

[John Mahan]

And Lane, based upon what you wrote above, that way we are all interconnected is through consciousness. Some scholars are re-examining consciousness which here-to-fore was thought to be ostensibly exclusive to each of us. Each of having a separate brain and consciousness. This theory however is debunked by occurrences like near death experiences, re-incarnation when children recall precisely who they were in previous lives and where they lived and how they died....and great precociousness like Mozart and even savant syndrome. It also explains ESP on some level and even more commonly intuition.

I keep an open mind about this including the notion there isn't a God. People underestimate the vastness of the universe and the infinite permutations of the primordial soup conducive to life...or even modern man evolving from primitive man 200,000 years ago. Many of the greatest minds that ever lived including Hawking who further refined Einstein's theory of relativity which debunked Newton's more linear postulates and even Einstein himself didn't believe in God and of course both men studied the universe and the probabilities for life to exist without God greater than just about anybody else. Speaking of evolution, there is a reason that the cell phone was just invented 20 years ago and not around in the time of Christ.

This may expand your view a bit. A story of a Harvard educated neurosurgeon that used to believe that consciousness was singular and the brain was analogous to a computer CPU and when the switch turned off the brain died and so did the spirit. He believes completely different now. He has spent his life studying the brain and operating on it and knows a little about the subject.

His story:

This is the first time I am quoting my own post. The fact that there is only one like on this post really shows how much humanity has been striped away by tinnitus or perhaps those here...many at least, never had much of any. Don't worry for those who feel indicted, God isn't punishing you for your tinnitus. You were born that way. Disappointing at least. An alternative view from one of the world's leading neurosurgeons on consciousness which explains so many things that don't comport with modern 'religion'. An explanation of what Lane has experienced and so many more...and the true interconnectivity of people...true essence of harmony in the universe and opposite of the thread title...that we are all connected which even includes animals and likely even plants responding to love and music.

Many don't understand the interconnectivity of consciousness and why some are born to great talent and others aren't. The 'nurture' lovers who cling to their bible and try to explain away why they don't have the talent others have and of course they consistently believe that the environment, the same reason they lack talent in different areas, it was their environment that caused their tinnitus when in actual fact it was their genetic predisposition, the very genetic predisposition in fact to listen to music too loud whether they were told not to...or just lacked the innate sense, ergo consciousness to not hurt their body. Dr. Alexander explains it and the fact that is went so underappreciated really speaks to how low the acumen is on this forum...which of course explains the negativity. It all fits in other words for those wondering. What Dr. Alexander writes may in fact be the only possible mechanism aka hope for humankind to survive.

Dog's that know the difference between right and wrong that people do:


Is there any explanation for Emily Bear who could just sit down at a piano never being in front of one before and start playing music at the age of 2? No. She can't explain it in fact. She is Mozart.

 

[Bartoli]

As I said we shouldn't risk it anyway. It's not worth it even if there is a 0.001 % chance of making tinnitus worse.

Personally, I have never been a fan of headphones so for me not using them is not a big deal.

I wouldn't risk it because of the small chance to make mine worse. I have a feeling that low-level listening on headphones would be ok, but I know better than to risk it.
From a logical standpoint, I think proximity of the sound source doesn't make a difference as long as listening levels are safe. In the end, doesn't all sound end up right at your eardrum?

 

[PeteJ]

It is for this reason I have no interest in tinnitus seminars, conferences or the like, because most of them are hosted by medical professionals that have no experience of tinnitus. I respect their medical qualifications and the fact they are physicians, which enables them to treat underlying medical problems associated with the auditory system. However, unless they have experience of tinnitus and I don't mean "mild" tinnitus; severe and intrusive tinnitus, then they cannot begin to understand the condition and how it can seriously affect a person's mental and emotional wellbeing.

Michael

Yes, but then don't go on talking about "other things" going on in people's lives who have tinnitus.

I think the OP was alluding to that with the 'negativty' topic or at least I interpreted that way.

It is sometimes very annoying for me to interact with tinnitus sufferers or read comments from them and I don't mean just here. It is not as bad as people who don't have tinnitus but it is still the same. It's not everyone but it's when you don't know the context. Mild tinnitus can bother some people but it's severe tinnitus and other issues like ear pain that is true suffering. When the volume is higher than other normal sounds and when it's like that most of the time.

Imho, anyone who has SEVERE tinnitus will have a problem with it. It's not normal to have really loud tones 24/7 and people who have it fluctuate seem to cope better, at least it seems to me.

This convinces me it is about volume and the pattern or nature of the tinnitus is influential too. Multiple tones, pitch and volume incapacitates people and makes it hard to function.

Guess what, people who have such tinnitus are probably negative. Gee, really?

 

[Michael Leigh]

Yes, but then don't go on talking about "other things" going on in people's lives who have tinnitus.

@PeteJ

I do not like the manner in which you have addressed me. Furthermore, I was not in correspondence with you. If you wish to engage in a conversation then please address me correctly and with respect.

Good day.
Michael

 

[linearb]

@Michael Leigh

I do not like the manner in which you fail to properly use quote blocks. I do not like the way you constantly copy/paste the same unscientific information into every thread and then call it an "article". I do not like the way you hide behind decorum, as though the fact that someone says "bullshit" when they are dismissing one of your un-truths, changes the basic rationality of their post.

Furthermore, I am never in correspondence with you, but if you don't wish me to engage with you, then please address people with rationality, basic common sense, and a willingness to accept that you might be wrong about some things and have some ability to change your views.

Wishing you a great day,
<3 LinearB

 

[Michael Leigh]

@linearb

You are another person that has no manners or respect and thought with time this would have improved. Alas this is not the case.

Good day to you.
Michael

 

[Elfin]

This thread has really become a readable, microcosmic example of what @Jazzer was trying to rally against.

I know he was more suggesting that people who are expressing reactionary pain and torment induced by tinnitus are not negative but are in fact honest and normal and eloquently expressing their understandable trauma (I am in agreement with him), but the wider negative attitudes and in-fighting across this forum seem to pervade the majority of Support threads.

No need for it; and it makes a ironic mockery of the Support heading.

 

[fishbone]

This thread has really become a readable, microcosmic example of what @Jazzer was trying to rally against.

I know he was more suggesting that people who are expressing reactionary pain and torment induced by tinnitus are not negative but are in fact honest and normal and eloquently expressing their understandable trauma (I am in agreement with him), but the wider negative attitudes and in-fighting across this forum seem to pervade the majority of Support threads.

No need for it; and it makes a ironic mockery of the Support heading.

I am always here to turn negativity into positivity

Btw, nice seeing you again buddy....

 

[Greg Sacramento]

@Elfin - agree
@Jazzer has opinions on a host of things and most do. I have agreement with Jazzar Dave and others such as @PeteJ that tinnitus can be a pain for all, but it certainly can be when it's severe. I don't respond to anyone with criticism unless they mention that all with tinnitus can live a totally normal productive life. I'm not against uplifting and will, but it always carefully worded among health professionals - nurses and there are reasons for that. I have severe pain associated to physical problems and @fishbone understands as he has PM me showing compassion. Many here are very understanding towards me and others.

Jazzer is very compassionate, like most. He mails me most everyday to see how I'm doing.

I have talked to several researchers by email and told them that I post here. Some have said I view TT and I like what you post about physical T and PT and also like what others post. More than one researcher has mentioned @Michael Leigh and @Bill Bauer in regards that loud noise exposure is not a friend when one has tinnitus. They mention that this would include using headphones to listen to music. These researchers had said why take a chance. More than one has mentioned not to use protection when not in the face of loud noise as over protection can lower the auditory threshold.

 

[Harley]

This thread has really become a readable, microcosmic example of what @Jazzer was trying to rally against.

I know he was more suggesting that people who are expressing reactionary pain and torment induced by tinnitus are not negative but are in fact honest and normal and eloquently expressing their understandable trauma (I am in agreement with him), but the wider negative attitudes and in-fighting across this forum seem to pervade the majority of Support threads.

No need for it; and it makes a ironic mockery of the Support heading.

To build up on Jazzer's insightfull post, may I suggest, that we actually replace the word "negativity" with the word "reality".

The feelings of those trapped inside this waking nightmare are as real as they can get.
By dismissing those people as "negative", we are just further alienating those who need support the most.

 

[Fifth Business]

Tinnitus is a complicated symptom that affects millions of people--its my understanding that 1/6th of citizens from most developed countries suffer from it. If there is someone on this forum that is suffering badly who has been "called out" as being "too negative" for expressing their pain... I honestly have not seen it. What I see far more often is highly depressed, wildly idiosyncratic people spewing unsubstantiated shibboleths to a patient community that, again, numbers in the millions. If you think you've discovered the philosophers stone concerning the best course of action for the broad spectrum of people with tinnitus because you've spent 900 hours reading these forums and have corresponded with a number of people, great--but a have touch of self-awareness, please.

From time to time I think about this forum's spiritual liege-lord, DJ Cool_Raver_Guy69 (or whatever) who posted the infamous success story, "I'M aT a RaVe."
https://www.tinnitustalk.com/threads/i'm-at-a-rave.33722/

Its funny. I'm confident that the overwhelming majority of audiologists, particularly AuDs with a background in tinnitus management, would say that for him to continue his vocation (now armed with hearing protection ) is not only reasonable, but is moreover desirable. And you know what? I'd be happy to wager money that this fella, if he follows the basic protection protocol articulated by most audiologists, is going to be just fine and the probability of him developing catastrophic symptoms is quite low. Obviously there's shades of grey but to stridently dictate that Cool_raver_candyKiddd is going to kill himself because he's doing something that hyper-online people on support forum (that compromise, what, .001% of people with tinnitus) would never do?

I'm thinking that's far more negative than suggesting someone posting how they have no friends, are losing control of their life and on the brink of suicide, that maybe, just maybe, there might be issues affecting their well-being outside of ear-ringing and that uh perhaps it might be beneficial to talk to a therapist.

 

[Michael Leigh]

I have talked to several researchers by email and told them that I post here. Some have said I view TT and I like what you post about physical T and PT and also like what others post. More than one researcher has mentioned @Michael Leigh and @Bill Bauer in regards that loud noise exposure is not a friend when one has tinnitus. They mention that this would include using headphones to listen to music. These researchers had said why take a chance. More than one has mentioned not to use protection when not in the face of loud noise as over protection can lower the auditory threshold.

@Greg Sacramento

HI Greg Sacramento

Thank you for taking the time to write and submit your post. It is refreshing to know there are people beyond the realms of this forum, who take the time to peruse it with avid interest. I and other members here, know the dangers of headphone use, particularly for people that have noise induced tinnitus. This, and being able to manage and cope with tinnitus, is all that I have been trying to convey to people that visit this forum asking for help. Sadly, there are a few members here that try their best to thwart what I try to do. It has resulted in me having to place some of them on "ignore" because I have no desire to engage in their silly arguments.

Take care and all the best.
Michael

 

[fishbone]

I have severe pain associated to physical problems and @fishbone understands as he has PM me showing compassion.

I always extend my compassion to all that suffer. Greg I fully get your situation and my doors are always open to you. I just had a conversation with a distant friend that has battled depression at the lowest point. I have been trying to motivate him for the past 2 years to do something about his issue. He was always saying that there is no hope for him. He'll never have a chance in this world. He'd wake up in the morning and just lay in bed all day crying. I worked on him for about 2 years telling him that he can do it. He can live a life, he just needs to take those baby steps.

I get a call from him today (it's been 4 months since he called me). His call was a good one, he has found a new therapist to help him. He is waking up(he would never get out of bed) and going for 30 minutes walks daily (He has not been active in over 2 years). He is motivated to go to the university and learn again (He suffers from social anxiety). I stuck with him and pushed him (by being positive and having full compassion).

He had written himself off and labeled himself "as somebody that will never beat his depression". I still stuck with him and his call today shows that even at our lowest points we still have have that HOPE to eventually turn it around, little by little.

Stay strong GREG, I know you suffer and I have been in your shoes....Just stay strong my dear friend.

 

[Jazzer]

This thread has really become a readable, microcosmic example of what @Jazzer was trying to rally against.

I know he was more suggesting that people who are expressing reactionary pain and torment induced by tinnitus are not negative but are in fact honest and normal and eloquently expressing their understandable trauma (I am in agreement with him), but the wider negative attitudes and in-fighting across this forum seem to pervade the majority of Support threads.

No need for it; and it makes a ironic mockery of the Support heading.

Hi Elfin
Thank goodness for you and for people like you.
I've been on here on and off for about four years.
Every so often I have needed to correct somebody - usually a light sufferer - for criticising those like myself, who have severe tinnitus - for being negative.
Speaking about the reality of this condition takes integrity and considerable courage.
I don't like even admitting to myself what I have.

In certain quarters I have been accused with some regularity of being negative, nasty, arrogant, profane, a trouble maker, of having an agenda? and so on...
It doesn't actually hurt me in any real sense
- I happen to know who I am.
My self respect is not dependent on others.
I believe in kindness.

I will say that I never choose to upset anybody gratuitously, but we are all vulnerable to 'poison darts' and will sometimes be reactive.

I think - of all the stuff I've written on here, this post was the most necessary.

Dave x
Jazzer

 

[Jazzer]

To build up on Jazzer's insightfull post, may I suggest, that we actually replace the word "negativity" with the word "reality".

The feelings of those trapped inside this waking nightmare are as real as they can get.
By dismissing those people as "negative", we are just further alienating those who need support the most.

Harley - my friend - thank you for understanding me so well.
As you say - this condition is essentially a waking nightmare - and I am committed to standing up for the 'under dog,' the ones it hurts most.
Having said that, in fact I wish everybody well.
If there is anybody out there I have really hurt,
I am truly sorry.
Let's start again.
Love
Dave x
Jazzer

 

[Elfin]

What I see far more often is highly depressed, wildly idiosyncratic people spewing unsubstantiated shibboleths to a patient community that, again, numbers in the millions. If you think you've discovered the philosophers stone concerning the best course of action for the broad spectrum of people with tinnitus because you've spent 900 hours reading these forums and have corresponded with a number of people, great--but a have touch of self-awareness, please.

My sentiment is more aligned with the belief that if someone posts an opinion on this forum designed to assist and prevent others making similar mistakes that they themselves have made and have suffered form, surely that is a compassionate and generous thing to do. Whether it is objectively correct or not, or a shared experience, can be debated, but can, in the example of headphone use, be done so with a sentence such as: "I have continued to use headphones and have found no worsening in my symptoms. In my experience they are therefore safe to use, albeit at low volumes," rather than "you are a self-righteous moron who spreads fear and ignorance. Headphone use is fine." The latter statements do not seem to the sharing in the same compassion as the former and also do little to nothing to help anyone who is reading them, vulnerable and puzzled as to what course of action will best benefit them.

We all have this condition to varying degrees and of differing life-altering impact; surely, as a community, it would be better to try and help and assist each other as best and respectfully as we can, rather than just descend into pettiness and infighting. The 'touch of self awareness' clearly needs to be felt by more than those whom it currently is...

 

[PeteJ]

I agree with you, Jazzer.

Some people overreacted to a post of mine. I didn't mean any disrespect as I never do. I just don't like when people with severe tinnitus have reactions like, "you're negative" or "he/she/you probably has/have other things going on and that is why X can't cope. " Also, the idea that one feels worse because of what is read. Well, it is easy to worry about whether a noise or loud sound is harmful. But, no one without tinnitus can relate and I don't know about others but it's difficult to talk about this with those who don't have tinnitus at all.

It's sad that those with tinnitus perceive slight when none was intended. It sucks when your tinnitus is really severe and someone wants to pin a theory that you are negative or have "other things" going on and that is why you "can't cope."

I would rather have no tinnitus and deal with 'other things.' That's how bad my tinnitus is.