What Would You Like to Ask a Long-Term Sufferer of Severe Tinnitus?

[Lynny]

Hi everyone,

So this week I will be 'interviewing' someone who has suffered from severe tinnitus for quite some time, but has managed to find ways to deal with it. His tinnitus is above 80 dB , so indeed very severe (in my opinion).

I was wondering if (beside the obvious ones) anyone had any questions they'd like for me to ask? I'm thinking of posting a bit of a transcript on here afterwards.

Thanks in advance for suggestions!

 

[annV]

Hi everyone,

So this week I will be 'interviewing' someone who has suffered from severe tinnitus for quite some time, but has managed to find ways to deal with it. His tinnitus is above 80 dB , so indeed very severe (in my opinion).

I was wondering if (beside the obvious ones) anyone had any questions they'd like for me to ask? I'm thinking of posting a bit of a transcript on here afterwards.

Thanks in advance for suggestions!

This forum is full of long-term tinnitus sufferers.

 

[Lynny]

This forum is full of long-term tinnitus sufferers.

I realize that, but the difference to him is that he's actually out in the world and not on any forums because he is living his life regardless of tinnitus...

 

[Lynny]

His tinnitus is comparable in pitch and loudness to that of Gaby Olthuis (whom he personally contacted before her death).

 

[Autumnly]

Just don't turn it into a "See, this person has severe tinnitus/hyperacusis and they're living a normal life, everyone can do it!"-story because if someone has severe tinnitus/pain-hyperacusis their life will be different. If it's severe, it's debilitating, however, everyone has their own limits.

How bad is his hearing loss?
How loud is his tinnitus?
Does his tinnitus spike or is it stable?
Can he tune out his tinnitus?
Has his tinnitus ever gotten permanently worse?
Does he have pain-hyperacusis, loudness- hyperacusis?
How bad is his hyperacusis?

Usually, the "they have severe tinnitus but are living a normal life"-stories have several things in common: stable tinnitus, no or only mild pain-hyperacusis, tinnitus doesn't seem to get worse, they can tune it out. While the tinnitus loudness might be considered severe, they still don't represent the worst cases but are sometimes being used to tell the "extremely severe" cases that they're just not trying hard enough.

Nonetheless, happy to hear he can cope well!

 

[Lynny]

Just don't turn it into a "See, this person has severe tinnitus/hyperacusis and they're living a normal life, everyone can do it!"-story because if someone has severe tinnitus/pain-hyperacusis their life will be different. If it's severe, it's debilitating, however, everyone has their own limits.

How bad is his hearing loss?
How loud is his tinnitus?
Does his tinnitus spike or is it stable?
Can he tune out his tinnitus?
Has his tinnitus ever gotten permanently worse?
Does he have pain-hyperacusis, loudness- hyperacusis?
How bad is his hyperacusis?

Usually, the "they have severe tinnitus but are living a normal life"-stories have several things in common: stable tinnitus, no or only mild pain-hyperacusis, tinnitus doesn't seem to get worse, they can tune it out. While the tinnitus loudness might be considered severe, they still don't represent the worst cases but are sometimes being used to tell the "extremely severe" cases that they're just not trying hard enough.

Nonetheless, happy to hear he can cope well!

Thanks for the heads up, Autumnly. I realize the risks of those stories as being demeaning or offensive to people with similarily debilitating tinnitus/hyperacusis but I still think it's (very!) important to share positive stories of people living in comparable conditions.

It's a two-sided thing, I suppose. What can be perceived as inspirational for one can be demeaning to the other. I will keep that in mind! I hope you do understand my side of it as well and know my intentions are wellmeaning.

 

[winstona]

I think most of us here are tired of hearing the "I have severe tinnitus and I can live with it why can't you" kind of "success story". The reason being that those stories don't give us sufferers any hope of the condition ever improving, which is most of us who come to this forum want to hear in the first place.

No one wants to find out that they have to live with this for the rest of their lives! Although it's true for some people but it's really a tough pill to swallow... especially when you are panicking about tinnitus in your first week!

I think the type of success stories that tell people that tinnitus can fade are the better success stories and they're the only kind of success stories that should be shared. But that's just my opinion...

 

[PeteJ]

What does it mean to say it's over 80 dB?

I think it's common for 'severe' tinnitus to be both loud and extremely high pitched.

Also, any ear pain makes everything worse. Not being able to sleep etc. That's severe.

 

[Ken219]

I think the type of success stories that tell people that tinnitus can fade are the better success stories and they're the only kind of success stories that should be shared. But that's just my opinion...

From my experience of 30 years my tinnitus hasn't gone away but I do habituate to it. Unfortunately I have spikes or relapses, I'm in one now. I am scared and waiting to habituate again. @winstona have you habituated?

 

[winstona]

From my experience of 30 years my tinnitus hasn't gone away but I do habituate to it. Unfortunately I have spikes or relapses, I'm in one now. I am scared and waiting to habituate again. @winstona have you habituated?

No I don't think I have. But mine did fade a little. Although not as much as I would have liked.

 

[Digital Doc]

I think we need to start with a definition of severe T. I dont think it is only based in how loud it is. Also, it severe T the same as intrusive T?

 

[Tex]

His tinnitus is above 80 dB , so indeed very severe (in my opinion).

How does he or anybody else know his Tinnitus is "above 80 dB?" I go to one of the top ENT docs in Dallas annually. He made it clear from the start that it is a subjective condition and one's volume cannot be measured. He said Hyperacusis is the same. If you personally are overly sensitive to loud noise, you have Hyperacusis. At least that is what I was told.

 

[New Guy]

I'm happy to hear anyone share their experience and I can glean whatever bit of wisdom I can from it. I appreciate people who agree to be interviewed, and members of this forum who take the time to share what they've been through and what they've learned even though they don't have to.

 

[Michael B]

I'd like to know how he's managed to deal with it?

 

[GregCA]

I go to one of the top ENT docs in Dallas annually. He made it clear from the start that it is a subjective condition and one's volume cannot be measured.

That doesn't bode well for the other ENTs then... because measuring tinnitus volume is regularly done at many audiologists around the world, and is a key measurement in many clinical trials related to tinnitus.

 

[PureNoise]

That doesn't bode well for the other ENTs then... because measuring tinnitus volume is regularly done at many audiologists around the world, and is a key measurement in many clinical trials related to tinnitus.

Yup! Even Neuromod's questionnaire asks you to put your tinnitus loudness match before booking an appointment. I am actually having my loudness pitch match done tomorrow. It's one of the first things done (usually after having tinnitus for 6 months) by a competent audiologist treating you for tinnitus.

 

[Jazzer]

I personally will always question (doubt) the oft quoted volume level of severe Tinnitus sufferers who say,
"My Tinnitus is screamingly loud, but I just ignore it - and rarely think about it."

('Liar Liar - pants on fire')

 

[Lynny]

I personally will always question (doubt) the oft quoted volume level of severe Tinnitus sufferers who say,
"My Tinnitus is screamingly loud, but I just ignore it - and rarely think about it."

('Liar Liar - pants on fire')

I understand your doubts but I guess you can't (objectively) judge someone else's personal experience? I mean, to call them liars because their experience differs from yours is a pretty harsh claim & somewhat insulting, no?

 

[valeri]

I don't need to ask him anything, I'm living IT!

I only keep asking God... why????

 

[Jazzer]

I understand your doubts but I guess you can't (objectively) judge someone else's personal experience? I mean, to call them liars because their experience differs from yours is a pretty harsh claim & somewhat insulting, no?

I personally do not believe that 'their' severity is such as they claim.

The bit underneath is a school child's expression when he questions another's dodgy claims.
(Fairly obviously said in fun - those pants not being 'on fire' of course.)

 

[linearb]

That doesn't bode well for the other ENTs then... because measuring tinnitus volume is regularly done at many audiologists around the world, and is a key measurement in many clinical trials related to tinnitus.

Well, the volume can be subjectively measured, and you can hazard a guess at an objective measurement by taking the perceived volume and subtracting from it whatever hearing loss is present at that frequency. An obvious problem with this approach is that people with tinnitus tend to have damage in the same frequency range as their tinnitus. (This approach is what the UMich trials did to attempt to map actual volume changes in addition to THI changes).

The reason it's a key measurement in clinical trials is that it provides some kind of measurable outcome besides self-reported THI scores.

An additional issue is that we're pretty sure, from imaging studies, that tinnitus volume and tinnitus distress are modulated by different (though obviously connected) brain regions. We don't have a way to objectively assess distress, and ultimately distress is a better indicator of quality of life, than volume is.

 

[Tom Cnyc]

Well, the volume can be subjectively measured, and you can hazard a guess at an objective measurement by taking the perceived volume and subtracting from it whatever hearing loss is present at that frequency. An obvious problem with this approach is that people with tinnitus tend to have damage in the same frequency range as their tinnitus. (This approach is what the UMich trials did to attempt to map actual volume changes in addition to THI changes).

The reason it's a key measurement in clinical trials is that it provides some kind of measurable outcome besides self-reported THI scores.

An additional issue is that we're pretty sure, from imaging studies, that tinnitus volume and tinnitus distress are modulated by different (though obviously connected) brain regions. We don't have a way to objectively assess distress, and ultimately distress is a better indicator of quality of life, than volume is.

I was going to say something similar. Nobody really has 80 dB tinnitus. I think the studies they did years back showed the most severe tinnitus to be like, 15 dB.

That said - if the person has 65 dB of hearing loss at that frequency - it FEELS like 80 dB, because it can't be masked until that level.

 

[Tex]

Yup! Even Neuromod's questionnaire asks you to put your tinnitus loudness match before booking an appointment.

That is about like the chart for pain level. Hospital rooms have a chart on the wall for you to give your care provider "your perceived" pain level. So in your on mind you can hurt as badly as you want. Because in your mind you may be thinking, "I'm in pain. I'm at that level 10. Give me something to relieve it -- dammit!"

So you are at your ENT. You are suffering with this Hell we live with. So now you give your ENT "your perceived" Tinnitus volume level because in your mind your telling him, "this shit is loud!!! I need some relieve -- dammit!!!"

The actual volume level is presently impossible to measure.

 

[GregCA]

Well, the volume can be subjectively measured, and you can hazard a guess at an objective measurement by taking the perceived volume and subtracting from it whatever hearing loss is present at that frequency. An obvious problem with this approach is that people with tinnitus tend to have damage in the same frequency range as their T. (This approach is what the UMich trials did to attempt to map actual volume changes in addition to THI changes).

That is true, but in practice, we don't need a strict objective measurement: a subjective proxy is perfectly usable, for 2 reasons:

1. the subjective measurement is done "by comparison" to reference levels, and humans are notoriously bad at estimating absolute values, but really good at comparing 2 stimuli, which means the subjective level will be fairly accurate
2. what matters at the end of the day is the perception of the patient: I don't care that a super-accurate objective measurement samples my brain and tells me "it's 10 dB" if I perceive it at the same level as a 90 dB sound by comparison. Perception is reality (cue in some dialog from The Matrix). For a treatment to be successful, I only care about my change in perception: if the doctor tells me it has reduced my objective measurement by half, but I perceive no change in volume, I don't call that a success.

An additional issue is that we're pretty sure, from imaging studies, that tinnitus volume and tinnitus distress are modulated by different (though obviously connected) brain regions. We don't have a way to objectively assess distress, and ultimately distress is a better indicator of quality of life, than volume is.

I don't think one is a better indicator than the other: I have loud T and it impacts my quality of life, however I am no longer distressed by it. Many people with disabilities have obvious degradations to their quality of life, but they aren't necessarily distressed by it: the distress can be managed with the passing of time and mental work (like CBT, for example). It is orthogonal to qualify of life, in my opinion.

 

[COYS]

How do topics like this always end up in a contest of who has got it severe and who hasn't

 

[linearb]

I don't think one is a better indicator than the other: I have loud T and it impacts my quality of life, however I am no longer distressed by it. Many people with disabilities have obvious degradations to their quality of life, but they aren't necessarily distressed by it: the distress can be managed with the passing of time and mental work (like CBT, for example). It is orthogonal to qualify of life, in my opinion.

Well, I will just have to strongly disagree with you on that, speaking only for myself.

Tinnitus is a quality of life hit.

Being in a distress state for any reason is a quality of life hit.

The combination of both of these things, for me, is very much a 1 + 1 = 3 situation. Since I have no real control over the tinnitus but some significant degree of control over the distress, "3 - 1 = 1". That's why I think distress is ultimately a better indicator.

Speaking more generally, I find the idea that being in a distress state or not being "orthogonal" to quality of life is very strange. Like, if someone has a severe anxiety disorder with no comorbid factors, their entire problem is distress. Are you suggesting that such a person has the same quality of life they would if they didn't have a severe anxiety disorder?

 

[Lynny]

I personally do not believe that 'their' severity is such as they claim.

The bit underneath is a school child's expression when he questions another's dodgy claims.
(Fairly obviously said in fun - those pants not being 'on fire' of course.)

Yes, obviously, but it seems your point remains. What makes you so sure they are incorrect about the severity of their t? (I'm not necessarily disagreeing by the way, just wondering)

 

[Lynny]

How do topics like this always end up in a contest of who has got it severe and who hasn't

It really wasn't my intention to start such an argument! I honestly just want to create something that might give people a bit of hope, the way similar success stories gave me hope in the beginning. I owe a lot to those stories!

 

[COYS]

@Lynny completely agree. The initial stages of tinnitus are terrifying I found myself re reading success stories as they have me hope.

 

[Autumnly]

How do topics like this always end up in a contest of who has got it severe and who hasn't

Because many severe sufferers that are limited in their lives by their tinnitus have been told stories of other people who supposedly have severe tinnitus but are living a completely normal life. And I agree with Jazzer that those stories don't represent what severe tinnitus means. For me, severe tinnitus will have a noticeably negative impact on someone's life.

The only people I've heard who claim to have severe, loud tinnitus while being able to live a completely normal life are the ones that say they can tune it out and this is usually not the type of tinnitus long-term severe sufferers are talking about, they can't tune it out for most of the time.

For me as a severe sufferer, being told yet again that others with the "same condition" are coping better isn't inspiring or motivating, and seeing severe sufferers being used as inspiration for people new to tinnitus doesn't feel good either.

It just makes tinnitus look like a non-issue even if it's "severe".