Stop Telling Me to Live with It or Habituate

[linearb]

You have some reason, the study is bad, because in fact the ideation of suicide should be higher than 50% in the population that has tinnitus and not only the absurd 19% that the image of the study referred to.

You're sort of funny because first you spent a bunch of time defending your incorrect analysis of what the study was saying -- now you're attacking it for having bad data even though you're the one who posted it. Which is it?

Statistical analysis without an axis showing self-rated distress seems pretty dubious to me; most people I know with tinnitus are not very distressed by it, and the ones who are mostly aren't obsessive and still don't seem to spend a ton of time dwelling on it. It's easy to come to the conclusion that people who don't dwell on it have a less 'severe' condition, and I think that's a reasonable conclusion, but gets into ineffable psychological factors. I know at least one person whose tinnitus seems to be *much* louder than mine who says it just isn't something that is distressing to them and has never spent any significant time or effort trying to treat it.

We know from imaging studies that tinnitus distress and tinnitus volume have neurological correlates in different parts of the brain - meaning someone with worse lesions in one area will have higher subjective volume, and someone with worse lesions in another area will have higher distress ratings.

If someone or another study said that suicidal ideas reach 100% would not be exaggerating.

It wouldn't be exaggerating, it would just be wrong. We've got reasonable data on this, you posted some of it yourself. There is a variance between different studies, but certainly nothing approaching 100%. I don't know how old you are but I'm approaching 40, I've spent a lot of time around firearms users, motorcyclists and rock musicians -- tinnitus to some degree is an incredibly common affliction in these groups; most people do not have it severely, and most do not consider it anything other than an annoyance and a reason to be more vigilant about earplugs.

You're seeing everything through the myopic lens of your own suffering and distress. I totally believe that you feel like you're in hell right now, and that a big part of you doesn't feel strong enough to keep moving forward, and dwells on suicide as a sort of emotional role-playing so that you feel like you have an out and can gain some sense of control over your body. I get it, suicidal ideation is a constant fixture in my life, too -- the thing is that I'm 'fortunate' to have a ~20 year history of intermittently severe anxiety and depression that predates the significant tinnitus, so I can't really say that my own suicidal ideation changed much in response to the tinnitus, it just became another idiotic thing to feel bad about in a long list of idiotic ways my body has failed me. You know what, though? I'm still here, and since the tinnitus really kicked me in the head in 2010 I've sort of made a series of reasonable and intelligent decisions about what to do with my life, which has let me set myself up in a quiet, idyllic rural environment where I basically dictate the hours I work and am surrounded by tranquility externally more or less all the time. I have a family that loves me, supports me and depends on me, and that provides a lot of motivation to just suck it up and push through the really hard days. The good days just sort of fly by; the devil of it for me is that every time I hit a patch where things feel very tolerable for a while straight, I start to think I've turned some new corner and gotten over this nonsense, and then it rears it's nasty piercing intrusive head again for whatever reason.

You've basically got to decide if you want to live, or not. If you truly do, then you'll find a way to do it, because people live with all kinds of horrible things. Beethoven was quite tormented by tinnitus and severely progressive hearing loss; not only did he not off himself, he continued to compose and conduct music well past the point that he was able to hear it at all.

Your constant downplaying of the severity, pain, suffering and basic unfairness of cancer deaths is pretty insulting to those of us who have had to watch loved ones go through that, but I'm not offended, I just feel bad for you.

Constantly quoting the handful of well-documented tinnitus related suicides we have in the press also seems myopic to me, when there is no shortage of stories from people who say "tinnitus sucks but I'm living pretty well in spite of it", or "tinnitus sucks and drives me sort of crazy a lot of the time but it's nothing to lose sleep over".

You probably can't fix your tinnitus, barring some major medical breakthrough. So, what do you want? Constantly spewing toxicity here and basically alienating people who are otherwise prone to empathize with you because of our shared curse seems of dubious value. You're not going to convince anyone that you're "right". Where do you want to go with your life? What brings you joy? Can you envision a world in which you still have tinnitus, but are 5% less distressed by it than you are right now? 10%? 50%?

As to "what do you want", if what you want is to respond to this with vitriol, animus or sarcasm you won't get another reply from me because I have a backlog of programming projects for work and fun that's about two feet thick. This is my best and most honest effort to engage with you; I would like to be your internet friend, but if you're not here to make friends that's also fine, it's a free country* and we've got an ignore function for a reason.

* asterix should be self explanatory

 

[linearb]

@TheDanishGirl I have a couple thoughts for you I don't want to share publicly, but your privacy settings don't let me send you a message. If you're interested, shoot me one and I should be able to reply

@Equalizer I see you've chosen the "sarcasm and vitriol" route; if that's all you've got for people who honestly want to care and help you, I think you're gonna have a pretty rough go of life, but I wish you all the best. That said, in the time I spent trying to reach you I could have closed out a couple tickets for work, so I won't be trying again! Have a nice life.

 

[TheDanishGirl]

@TheDanishGirl I have a couple thoughts for you I don't want to share publicly, but your privacy settings don't let me send you a message. If you're interested, shoot me one and I should be able to reply

@Equalizer I see you've chosen the "sarcasm and vitriol" route; if that's all you've got for people who honestly want to care and help you, I think you're gonna have a pretty rough go of life, but I wish you all the best. That said, in the time I spent trying to reach you I could have closed out a couple tickets for work, so I won't be trying again! Have a nice life.

Hmm, don't know why that is, or how to change it. I tried to send you a message but I get this message: ERROR: This member limits who may view their full profile :/

 

[Tinker Bell]

You're sort of funny because first you spent a bunch of time defending your incorrect analysis of what the study was saying -- now you're attacking it for having bad data even though you're the one who posted it. Which is it?

Statistical analysis without an axis showing self-rated distress seems pretty dubious to me; most people I know with tinnitus are not very distressed by it, and the ones who are mostly aren't obsessive and still don't seem to spend a ton of time dwelling on it. It's easy to come to the conclusion that people who don't dwell on it have a less 'severe' condition, and I think that's a reasonable conclusion, but gets into ineffable psychological factors. I know at least one person whose tinnitus seems to be *much* louder than mine who says it just isn't something that is distressing to them and has never spent any significant time or effort trying to treat it.

We know from imaging studies that tinnitus distress and tinnitus volume have neurological correlates in different parts of the brain - meaning someone with worse lesions in one area will have higher subjective volume, and someone with worse lesions in another area will have higher distress ratings.


It wouldn't be exaggerating, it would just be wrong. We've got reasonable data on this, you posted some of it yourself. There is a variance between different studies, but certainly nothing approaching 100%. I don't know how old you are but I'm approaching 40, I've spent a lot of time around firearms users, motorcyclists and rock musicians -- tinnitus to some degree is an incredibly common affliction in these groups; most people do not have it severely, and most do not consider it anything other than an annoyance and a reason to be more vigilant about earplugs.

You're seeing everything through the myopic lens of your own suffering and distress. I totally believe that you feel like you're in hell right now, and that a big part of you doesn't feel strong enough to keep moving forward, and dwells on suicide as a sort of emotional role-playing so that you feel like you have an out and can gain some sense of control over your body. I get it, suicidal ideation is a constant fixture in my life, too -- the thing is that I'm 'fortunate' to have a ~20 year history of intermittently severe anxiety and depression that predates the significant tinnitus, so I can't really say that my own suicidal ideation changed much in response to the tinnitus, it just became another idiotic thing to feel bad about in a long list of idiotic ways my body has failed me. You know what, though? I'm still here, and since the tinnitus really kicked me in the head in 2010 I've sort of made a series of reasonable and intelligent decisions about what to do with my life, which has let me set myself up in a quiet, idyllic rural environment where I basically dictate the hours I work and am surrounded by tranquility externally more or less all the time. I have a family that loves me, supports me and depends on me, and that provides a lot of motivation to just suck it up and push through the really hard days. The good days just sort of fly by; the devil of it for me is that every time I hit a patch where things feel very tolerable for a while straight, I start to think I've turned some new corner and gotten over this nonsense, and then it rears it's nasty piercing intrusive head again for whatever reason.

You've basically got to decide if you want to live, or not. If you truly do, then you'll find a way to do it, because people live with all kinds of horrible things. Beethoven was quite tormented by tinnitus and severely progressive hearing loss; not only did he not off himself, he continued to compose and conduct music well past the point that he was able to hear it at all.

Your constant downplaying of the severity, pain, suffering and basic unfairness of cancer deaths is pretty insulting to those of us who have had to watch loved ones go through that, but I'm not offended, I just feel bad for you.

Constantly quoting the handful of well-documented tinnitus related suicides we have in the press also seems myopic to me, when there is no shortage of stories from people who say "tinnitus sucks but I'm living pretty well in spite of it", or "tinnitus sucks and drives me sort of crazy a lot of the time but it's nothing to lose sleep over".

You probably can't fix your tinnitus, barring some major medical breakthrough. So, what do you want? Constantly spewing toxicity here and basically alienating people who are otherwise prone to empathize with you because of our shared curse seems of dubious value. You're not going to convince anyone that you're "right". Where do you want to go with your life? What brings you joy? Can you envision a world in which you still have tinnitus, but are 5% less distressed by it than you are right now? 10%? 50%?

As to "what do you want", if what you want is to respond to this with vitriol, animus or sarcasm you won't get another reply from me because I have a backlog of programming projects for work and fun that's about two feet thick. This is my best and most honest effort to engage with you; I would like to be your internet friend, but if you're not here to make friends that's also fine, it's a free country* and we've got an ignore function for a reason.

* asterix should be self explanatory

Very well said. It may not help him, but I think it has merit for others struggling with suicide idealization. It was reassuring and helpful for me, so thank you for taking the time to contribute.

 

[linearb]

Hi @Equalizer

I apologize for the use of "funny"; that was uncalled for and poor judgement on my part.

Other than that -- I deliberately used stronger, more negative phrasing than I am generally prone to so that you wouldn't accuse me of sugarcoating anything.

The fact that your response is to take every negative word I used, out of context, and throw it back it me without in any way responding to the meat of what I said speaks volumes to me. Your negativity and distress is making it impossible for me tocommunicate with you, because we are not really living in the same world.

I live as fully as I can within the constraints that my body and life have placed on me. I'm as concerned with finding "acceptance" as "silence"; this is just a quirk of my personality and way of putting things together. We are all very different.

I do not dispute that there are elements of self-coaching, if not self-deception, in my approach to these problems... but I also know that the last decade of my life has had a ton of joy in it, and moments when I felt truly blessed to be alive, and therefore that is much preferable to me than just walking around with my head in a black hole all the time. I've done it both ways. I'm not interested in giving up. So what does that leave?

I hope that you eventually find some peace and happiness, if that's what you desire. I do not think that anything productive will come from further efforts on behalf of either of us to interact here, because I don't think that anything productive has come from either of our efforts up to this point.

 

[Luman]

I went to a top NYC Hospital today, which has state of the art medical equipment, and a staff of highly esteemed ear doctors and related professionals, some of whom specialize in tinntus. I was told by the doctor I saw, that there is nothing wrong with me that they could do anything about. If I really wanted to get an MRI, Catscan, or other tests, he'd arrange it, but in his opinion it would be a waste of time and money. BTW, the do7ctor has tinnitus in both ears, has practiced his specialties in several states, and works with leading ear specialists. I am no longer looking for a cure, and am going to focus my energies on habituation, and enjoying my life.

 

[threefirefour]

I went to a top NYC Hospital today, which has state of the art medical equipment, and a staff of highly esteemed ear doctors and related professionals, some of whom specialize in tinntus. I was told by the doctor I saw, that there is nothing wrong with me that they could do anything about. If I really wanted to get an MRI, Catscan, or other tests, he'd arrange it, but in his opinion it would be a waste of time and money. BTW, the do7ctor has tinnitus in both ears, has practiced his specialties in several states, and works with leading ear specialists. I am no longer looking for a cure, and am going to focus my energies on habituation, and enjoying my life.

I thought you had ETD. Do you confirmed not have it, or it it Patulous or something?

 

[Luman]

I thought you had ETD. Do you confirmed not have it, or it it Patulous or something?

Sorry for the triple post, I was using my cell phone on the subway and screwed up.

I have no diagnosis for anything other than SNHL. I am going to continue to use the Valsavi Eustachian Tube Exerciser and/or the Valsalva maneuver, because I still think that my tubes are somewhat clogged, but not bad enough to be considered "dysfunctional" by medical standards. My doctor said that this activity would not be harmful and I could feel free to continue, if I wanted to. He did not say that it was a waste of time, or that he wouldn't try it if he were in my position.

All doctors must comply with the standards and regulations set by the medical boards. The doctor could only go by test results, and his observations, which did not show ETD. He couldn't tell me that using the Valsalva maneuver (or a device for that purpose) would help, because he doesn't know, and it would probably be unethical to actually advise me to do this, even if he thought it might help. I am going to continue to do what I've been doing, since there's not many other options available for home use, which are physical in nature, as far as I know, which might help to alleviate this problem.

 

[threefirefour]

Sorry for the triple post, I was using my cell phone on the subway and screwed up.

I have no diagnosis for anything other than SNHL. I am going to continue to use the Valsavi Eustachian Tube Exerciser and/or the Valsalva maneuver, because I still think that my tubes are somewhat clogged, but not bad enough to be considered "dysfunctional" by medical standards. My doctor said that this would not be harmful and I could feel free to do it if I wanted to.

All doctors must comply with the standards and regulations set by the medical boards. The doctor could only go by test results, and his observations, neither of which warranted my using the Valsalva (or a device with a similar purpose), so he couldn't tell me that it would help because he doesn't know, and it would be unethical to advise me to do this even if he thought it might help.

Did they stick the camera up your nose? I wouldn't leave until they do. That's the only surefire way to tell.

 

[Kolisar]

One can have pretty loud T and not be that effected by it emotionally.

Then there is me who has a somewhat mild T and it effects me to the point of wanting to be dead/kill myself

Which is worse?.....

Personally, I believe the later. The volume is irrelevant, what matters is how it affects the person suffering from tinnitus.

 

[Luman]

Did they stick the camera up your nose? I wouldn't leave until they do. That's the only surefire way to tell.

No, no camera. This doctor is very experienced and I'm sure that he would have done it, or recommended it, if it was warranted in my case.

 

[threefirefour]

No, no camera. This doctor is very experienced and I'm sure that he would have done it, or recommended it, if it was warranted in my case.

No often they decide not to do it because they don't feel like it. Basically it doesn't hurt to check. Next time you go be sure to ask. They will often do a tympanometry or something, which only works for serious blockage, or some other test. This is the one test that is completely accurate. Next time you go be sure to push for it.

 

[Luman]

No often they decide not to do it because they don't feel like it. Basically it doesn't hurt to check. Next time you go be sure to ask. They will often do a tympanometry or something, which only works for serious blockage, or some other test. This is the one test that is completely accurate. Next time you go be sure to push for it.

Thanks for the advice, but I doubt I will need to go back, I am certain that I have no serious blockage, in fact I have no scientific evidence that there's any blockage at all. I don't want to put the name of the facility here, as it would sound like an endorsement and I only spent less than a half hour there, but they do not do things by what they feel like doing, they do what is considered to be medically correct. If you'd like online information about the institution, PM me.

 

[Michael Leigh]

acticed his specialties in several states, and works with leading ear specialists. I am no longer looking for a cure, and am going to focus my energies on habituation, and enjoying my life.

Some people have difficulty accepting tinnitus and others don't. We are all different. In some instances medication such as antidepressants and night sedation can help. I don't believe that it's true the medical profession cannot help some people habituate to tinnitus. Although, the ENT doctor that advised you is correct in one way. With respect to him having tinnitus he should have known better and advised: it is the role of the Hearing Therapist and Audiologist that specialises in the treatment and management of tinnitus to help patients come to terms and eventually habituate to the condition. However, these health professionals cannot do it all. If the patient is looking for a cure or persistently has a negative mindset reaching habituation can be difficult.

Michael

 

[Luman]

Some people have difficulty accepting tinnitus and others don't. We are all different. In some instances medication such as antidepressants and night sedation can help. I don't believe that it's true the medical profession cannot help some people habituate to tinnitus. Although, the ENT doctor that advised you is correct in one way. With respect to him having tinnitus he should have known better and advised: it is the role of the Hearing Therapist and Audiologist that specialises in the treatment and management of tinnitus to help patients come to terms and eventually habituate to the condition. However, these health professionals cannot do it all. If the patient is looking for a cure or persistently has a negative mindset reaching habituation can be difficult.

Michael

Thank you, Michael. I did not provide enough details. The hospital where I went has counselors for tinnitus, and he recommended, if needed, CBT or other forms of training. They also have audiologists on staff, and devices for tinnitus treatment. Since I did not present myself as having severe symptoms, which is the truth, the doctor probably didn't feel the need to spend a lot of time going into detail about things that could be easily accessed from a staff member, or their website, if needed. He answered all of my questions very thoroughly.

If you have developed a cautious, or negative, attitude towards the American medical system, I'm in agreement with you one hundred percent, but this hospital is not on this level, people come from very far distances to receive treatment there. Unfortunately, this type of world-class medical expertise is not available to the majority of American citizens. I am very lucky to live in a city where it is.

 

[threefirefour]

Thanks for the advice, but I doubt I will need to go back, I am certain that I have no serious blockage, in fact I have no scientific evidence that there's any blockage at all. I don't want to put the name of the facility here, as it would sound like an endorsement and I only spent less than a half hour there, but they do not do things by what they feel like doing, they do what is considered to be medically correct. If you'd like online information about the institution, PM me.

You can if you want. I wouldn't want to waste money if I think nothings there. IMO the best way to tell if there's any sort of ETD, it's to drive up a small hill. My ears always plug up really badly if i drive up a short 20m incline. Or if your ears always crackle badly.

ETD doesn't always cause tinnitus, it just means ETD.

P.S I would definitely not go for CBT or TRT. Money spent on a scam is always better spent elsewhere.

 

[Michael Leigh]

Thank you, Michael. I did not provide enough details. The hospital where I went has counselors for tinnitus, and he recommended, if needed, CBT. They also have audiologists and devices. Since I did not present myself as having severe symptoms, which is the truth, he probably didn't feel the need to spend a lot of time going into detail about things that could be easily accessed from a staff member, or their website.

No problem @Luman and thank you for the clarification. The medical centre that you describe sounds very equipped and this is precisely what I'm talking about. Counselling, TRT, CBT ,mindfulness, Relaxation therapy, sound therapy devices such as white noise generators and sound machine, can go a long way in helping people habituate to tinnitus.

Some people believe tinnitus means they can never enjoy a fulfilling life and this is completely untrue. The majority of people habituate to the condition and even those that have it severe do. With persistence and hard work. Life is problematic and no one escapes problems. The fact of the matter is: too many people today want everything easy and the first hint of stress or trouble they are ready to press the destruct button. Where has the grit, drive and determination and the will to succeed gone? I spent 4 years habituating to severe tinnitus and I'm nothing special. I am an avid reader and was unable to read a book for 2 years. Did I fold up like a wilting flower and say I can't carry on. No, I dealt with it just as many people in this forum that have difficulty with tinnitus. You fight and if you fall down, get up dust yourself down and keep on trying.

Michael

 

[Luman]

No problem @Luman and thank you for the clarification. The medical centre that you describe sounds very equipped and this is precisely what I'm talking about. Counselling, TRT, CBT ,mindfulness, Relaxation therapy, sound therapy devices such as white noise generators and sound machine, can go a long way in helping people habituate to tinnitus.

Some people believe tinnitus means they can never enjoy a fulfilling life and this is completely untrue. The majority of people habituate to the condition and even those that have it severe do. With persistence and hard work. Life is problematic and no one escapes problems. The fact of the matter is: too many people today want everything easy and the first hint of stress or trouble they are ready to press the destruct button. Where has the grit, drive and determination and the will to succeed gone? I spent 4 years habituating to severe tinnitus and I'm nothing special. I am an avid reader and was unable to read a book for 2 years. Did I fold up like a wilting flower and say I can't carry on. No, I dealt with it just as many people in this forum that have difficulty with tinnitus. You fight and if you fall down, get up dust yourself down and keep on trying.

Michael

My new doctor told me that with tinnitus habituation, "it moves to a different part of the brain". He is a surgeon and despite having tinnitus, is affiliated not only with the hospital that I went to, but multiple others with names that would be instantly recognizable by many. I told him that he is a "role-model" for tinnitus patients.

 

[Michael Leigh]

There is no doubt that tinnitus can be seriously debilitating. The people that I'm describing in my post above are people that do not have tinnitus that is severe all the time or who are able to get treatment for their tinnitus. Medications, counselling and using sound therapy etc. There are some people that have tinnitus that is quite intrusive and for various reasons are unable to get medical help. These are the people that I feel particularly sorry for and they are in an unfortunate situation.

Michael

 

[Tinker Bell]

You can if you want. I wouldn't want to waste money if I think nothings there. IMO the best way to tell if there's any sort of ETD, it's to drive up a small hill. My ears always plug up really badly if i drive up a short 20m incline. Or if your ears always crackle badly.

My ears do that as well, but no ETD. My ENT was fairly confident that I did not have one, but we did the scope test for added confirmation.

 

[threefirefour]

My ears do that as well, but no ETD. My ENT was fairly confident that I did not have one, but we did the scope test for added confirmation.

The crackling or the plugging?

 

[Greg Sacramento]

@Michael Leigh Thank you for saying that tinnitus can be seriously debilitating. When I first got subjective T that had a loud buzz, I was able to go with my life after about 3.5 years. I also had ready bad hyperacusis that went away.

Now I have piecing high pitch electrical tinnitus with hyperacusis. Most of the time I find it unbearable and can't post. I'm having a difficult time posting this now. Doctors have come up with a diagnosis, but then say it's more complicated than that. This has happened several times now.

I went to school in London for a year. I stayed at the St James Hotel. Sometimes I would go to bed early and get back up at 2 am. Another student or two and myself would walk to St Paul's Cathedral. Other times in another direction to Hype Park. It was so quiet and peaceful. My parents owned a home on a quiet fairy large lake in New England. I would get up early and row in silences.

 

[Gl0w0ut]

Apparently my threads have a habit of sticking around past their prime. I feel the grand point of it all has been made. I feel habituation is giving up and not actually looking for ways to solve the problem.

 

[Bobbie7]

Some people believe tinnitus means they can never enjoy a fulfilling life and this is completely untrue. The majority of people habituate to the condition and even those that have it severe do. With persistence and hard work. Life is problematic and no one escapes problems. The fact of the matter is: too many people today want everything easy and the first hint of stress or trouble they are ready to press the destruct button. Where has the grit, drive and determination and the will to succeed gone? I spent 4 years habituating to severe tinnitus and I'm nothing special. I am an avid reader and was unable to read a book for 2 years. Did I fold up like a wilting flower and say I can't carry on. No, I dealt with it just as many people in this forum that have difficulty with tinnitus. You fight and if you fall down, get up dust yourself down and keep on trying.

Michael

**********************************************************************************************

Hey Michael @Michael Leigh - I agree with you totally !

***********************************************************************************************

It is better to light a candle than curse the darkness.
~~ Eleanor Roosevelt ~~

 

[glynis]

My tinnitus is really sever and debilitating and in both ears and impossible to habituate to most of the time due to Menieres .
Having a hard time and last 2 days on the sofa sick and wobbly on my feet.
Menieres is a progressive disease and just hope one day I get a break...
Love glynis

 

[Bobbie7]

y tinnitus is really sever and debilitating and in both ears and impossible to habituate to most of the time due to Menieres .
Having a hard time and last 2 days on the sofa sick and wobbly on my feet.
Menieres is a progressive disease and just hope one day I get a break...
Love glynis

@glynis - You are both a lovely and extremely helpful person - always available and selflessly willing to assist others who are suffering. If anyone deserves a good break, it is most certainly you!

Sending my sincere best wishes and I hope you feel better soon!

Barbara

 

[glynis]

@Bobbie7 ,
Thank you so much,
Its hard with blasting ears and Menieres symptoms to be on here .
Not feeling like a proud Ambassador at the moment every day is to tough xxx
Love glynis

 

[Tinker Bell]

The crackling or the plugging?

Both.

 

[meredsm]

There is no doubt that tinnitus can be seriously debilitating. The people that I'm describing in my post above are people that do not have tinnitus that is severe all the time or who are able to get treatment for their tinnitus. Medications, counselling and using sound therapy etc. There are some people that have tinnitus that is quite intrusive and for various reasons are unable to get medical help. These are the people that I feel particularly sorry for and they are in an unfortunate situation.

Michael

I may have "morse code" tinnitus. Do you know of anyone who has this kind of tinnitus who has habituated?

 

[threefirefour]

Both.

Interesting. How loud is/was your crackling? And do you have a feeling of fluid in your ears? Are you usually stuffed up?