Clinically Relevant Bothersome Tinnitus

[Michael2013]

As you know, the vast majority of folks with EVAS do not have tinnitus.

What makes you say this? The correlation between the two should be no better than with people who have sensorineural hearing loss from other causes, given that we know most tinnitus is caused from hearing damage. Entirely anecdotal, but all the people I have met online through various forums and support groups who have it also have tinnitus to some extent. If anything I would guess that people with EVAS would be more likely to have tinnitus given the repeated damage that occurs over time. But I could be wrong of course.

Indeed, it is likely that a goodly proportion of folks with EVAS are entirely asymptomatic! (In medicine we call such MRI findings "incidentalomas.) What is it that has you so convinced that your tinnitus and EVAS are causally related?

Yes, I agree. This is why we don't even know the true number of people who have it. But we do know that the cause of tinnitus in many cases is damage to the inner ear cochlea hair cells. That is not in dispute is it? As far as why I am convinced my tinnitus is a result of EVAS, well 1. my neurotologist told me this was the likely cause and 2. it started when I had another small step loss in my hearing as a result of EVAS.

-Mike

 

[Dr. Nagler]

@Michael2013, the problem with EVAS - as I see it - is that we do not have a real good handle on the incidence of asymptomatic EVAS. ENTs and neuroradiologists just do not look for that sort of configuration without a reason to do so. I am not picking an argument here. I am as frustrated about the lack of progress in tinnitus research as the next guy (or gal). But I do not know how a neurotologist can say that your EVAS is the likely cause of your tinnitus merely based upon the fact that you have EVAS and tinnitus.

Let me ask you this (unrelated) question. Had your EVAS been diagnosed when you were a child, how would you have conducted your life differently - given that as a child, you didn't know jack spit about tinnitus?

Thank you for your input in this thread. I appreciate it.

Dr. Stephen Nagler

 

[MikeA]

So as I understand it, @Mark McDill feels that clinically relevant bothersome tinnitus is tinnitus that in some way affects a person's quality of life. I actually like that concept very much.

Any other thoughts?

Dr. Stephen Nagler
(with appreciation to all who responded)

I agree that a compromised quality of life might be a good definition for the concept of clinically relevant bothersome tinnitus. Definition might also include notable depression that can be attributed largely to annoyance from tinnitus.

Mike

 

[Michael2013]

@Michael2013, the problem with EVAS - as I see it - is that we do not have a real good handle on the incidence of asymptomatic EVAS. ENTs and neuroradiologists just do not look for that sort of configuration without a reason to do so. I am not picking an argument here. I am as frustrated about the lack of progress in tinnitus research as the next guy (or gal). But I do not know how a neurotologist can say that your EVAS is the likely cause of your tinnitus merely based upon the fact that you have EVAS and tinnitus.

I didn't intend to say that EVAS was the direct cause of tinnitus. If it came across that way, it was bad wording on my part. Given that we know tinnitus is often seen in people with hearing loss, it is likely that my tinnitus is a result of the hearing damage that occurred last Sept 21th, as my tinnitus started the next day and got worse later that month. It is also thought (based on some studies) that those with enlarged vestibular aqueducts are more likely to have additional hearing loss as a result of minor head injuries, jarring movements, or other increases in head pressure. Of the people I know who have this, they all have continually lost a bit more hearing after various incidents.

The reason this particular neurotologist even ordered the cat scan is because we had no known cause on file of my previous hearing loss as a kid, and because I pushed for more answers. The first ENT I went to simply blew me off and because my hearing damage (distortion, hyperacusis, and tinnitus) wasn't showing up on his audiogram very wel, he couldn't understand what I was complaining about.

Let me ask you this (unrelated) question. Had your EVAS been diagnosed when you were a child, how would you have conducted your life differently - given that as a child, you didn't know jack spit about tinnitus?

Given that "large vestibular aqueducts" was first named in 1978, only a year before I was born, there was little known about it at the time, so my life wouldn't have changed. I don't blame the doctors for not finding it back then, but had I known what I do today, there are things I could have done differently. I always had some temporary hearing loss during and after very strenuous workouts (ie long runs training for a marathon) that I assumed was normal. It always returned back to normal once I calmed down after a bit and I just assumed it was this way for everybody. I won't run another marathon. I can't play raquetball as that had also caused some weird hearing issues after a hard playing game. There are no hard rules or proof of what will or will not cause more permanent loss, but I have a much better idea now on the consequences of some things. My mindset has now shifted from believing I was simply born with hearing in one ear to now having progressive hearing loss that I need to take care to preserve.

-Mike

 

[Dr. Nagler]

Thanks for the explanation, @Michael2013. I appreciate it.

Dr. Stephen Nagler

 

[Lisa88]

My "clinically relevant bothersome T began with the onset. The T came on like a hurricane. Multitude of noises, the most debilitating was the loud ringing. . I was miserable for the first month. The ENT and Audiologist offered little or no information. Particularly the audiologist when he told me that I would have to learn to live with it and when he worked in the VA hospital, the patients would just shoot themselves it got too bad. He even used his fingers to simulate a gun to the head. I did not need to hear this at that time and that place. The ENT did not provide any information about therapies and strategies to deal with the T. I gained so much knowledge about T from this forum. Thank goodness! Otherwise I would have been lost.

CRBT
* Difficulty sleeping...fatigue
* Not enjoying activities that were previously enjoyed: restaurants, parties, events....
* Avoidance: Movie theaters, traveling long distances
* Worry, worry, worry if T will get worse
* Anxiety about symptoms related to T: ear pain, fullness
* MOST troubling...moving in a direction of living worries rather than living ones life which results in depression

I now rate my T mild. I have worked hard with CBT. I have a very good therapist who has struggled with T and so he gets it. If ENT/Audiologists would become more informed and helpful in terms of educating patients about what they can do to help with the onset of T, would be quite beneficial and comforting to patients!

Teri, now that you rate your t mild, has the volume appeared to lower also? Also, do you still have multi tone t? Just wondering if the t has changed, or your attitude, or both? Seems a relatively short time since your onset. Cheers.

 

[Teri]

Lisa,

My T volume seems lower to me. I continue to have a multitude of sounds: Sizzling frying pan, crickets, fleeting ringing in both ears. The T is mostly in my left ear but has traveled to my head and right ear when it gets loud. When my hearing dropped down to moderate hearing loss, I could not mask the left ear because of the hearing loss and the spiked loudness of the T.

I have gotten a diagnosis of possibly Meneires Disease, autoimmune disease of the inner ear, and cochlear hydrops (which seems to be the stronger diagnosis at this point because I have not gotten vertigo).

My attitude has changed greatly thanks to the work that I put into CBT. I am also a very prayerful person, so I know that my prayers and God's work also must be credited.

Hugs.

 

[LadyDi]

Yep, agree, @Teri. CBT may not be for everyone. But it was a lifesaver for me.
Glad you don't have the vertigo. Tinnitus is unpleasant enough.

 

[David S]

@Dr. Nagler, believe you would say your T is clinically relevant but not bothersome? Aint this basically two different things? As time, pass no matter what type of T it get less and less bothersome. Would also say that T that you only could hear in a very quite room or if you plug your ear is not so relevant. A lot of my friends and family lives with that without paying any attention to it.

 

[Katkin]

This is how it is for me: Some days my T is high pitched, shrill and continuous and really distressing. It is like this right now and I find it hard to concentrate on anything and it frightens and upsets me. When it is of a lower pitch/tone I am hardly aware of it and can get on with life more easily and almost happily. I really hope I can get to the point where this shrill, sharp T is unnoticeable. I could cry right now!

 

[Blair14]

@Katkin,

Prayers for you. I know how you feel. I am the same way. I had it for 8 years and managed, it was a lower tone, then over the last 4 years it has progressively gotten worse and about a month a go, it took me down. I am off work and a mess. Spent the first week pleading for help and finally after two trips to Emerg I was suicidal. Someone finally listened. Now I am trying to get some strategies in place, but even if it went back to the way it was, I think I could cope better, I did before, its the pitch and intensity. I am crying with you!

Blair

 

[Dr. Nagler]

@Dr. Nagler, believe you would say your T is clinically relevant but not bothersome? Aint this basically two different things? As time, pass no matter what type of T it get less and less bothersome. Would also say that T that you only could hear in a very quite room or if you plug your ear is not so relevant. A lot of my friends and family lives with that without paying any attention to it.

Excellent question, @David S. Gotta put my thinking cap on for this one!

Here's how I see it ...

Clinically relevant bothersome tinnitus is sort of a moving target. My tinnitus really doesn't bother me much at all. It used to - a whole lot - but it doesn't any more. It can, however, occasionally and totally unpredictably distract me for a minute or two. If I were a neurosurgeon, that would be clinically relevant. Indeed, it would prevent me from doing my job! But I'm not a neurosurgeon - so the fact that my tinnitus might occasionally and unpredictably distract me is not particularly clinically relevant. Or maybe the fact that it can distract me makes it bothersome, but not clinically relevant?

I am unaware of any sort formal definition in this regard - but I have heard the term used on occasion. My opinion is that what makes tinnitus "clinically relevant bothersome" tinnitus may have much more to do with how you react to your tinnitus than to any particular psychoacoustical characteristic of your tinnitus (loudness, pitch, timbre, etc.)

Dr. Stephen Nagler

 

[MichaelO]

I hear a constant 11 KHz tone in my right ear brought on by ECT treatments. Mine makes it difficult to get to and stay asleep. It gets louder and competes with my music when I play piano to the point where I have to stop playing. It is at times physically painful in the same way that a loud external tone would be. It is difficult to concentrate at times. I get depressed because of it and very much miss silence.

 

[Jay M]

I hear a constant 11 KHz tone in my right ear brought on by ECT treatments. Mine makes it difficult to get to and stay asleep. It gets louder and competes with my music when I play piano to the point where I have to stop playing. It is at times physically painful in the same way that a loud external tone would be. It is difficult to concentrate at times. I get depressed because of it and very much miss silence.

ECT?
Im not a musician but I just bought musician earplugs.

 

[Kathi]

Clinically Relevant Bothersome Tinnitus?
Any tinnitus that disrupts one's life. I'm in my 11th month and even though I am much better than I was --and I'm not distressed or in that horrific flight or fight mode anymore--tinnitus still causes me worry and concern. My tinnitus has become cyclical --some days low and some days very loud, making it difficult to habituate to. It's still hard to get over the disappointment when it goes from low to high. I still carry on--I have not missed any work and I continue to live my life--but the joy is being sapped from my life. I think that is relevant.

Hi All -

This past weekend my wife and I were in Northern Minnesota spending some time with a couple of friends of ours on the quiet shores of a beautiful lake. We talked about a wide range of things, most having absolutely nothing to do with tinnitus - but since one of them was a tinnitus audiologist (which is how we originally met years ago), the topic did pop up from time to time, particularly with reference to the below ...

There are many ways to classify tinnitus - objective v subjective, loud v soft, high pitched v low pitched, severe v mild, etc. One phrase that came up in our discussion was "clinically relevant bothersome tinnitus." The idea we tossed around was that most people who have tinnitus are not significantly affected by it, but those with clinically relevant bothersome tinnitus are.

So I wonder if any folks on this board would care to offer an opinion on what would constitute clinically relevant bothersome tinnitus.

Thanks -

Dr. Stephen Nagler

 

[Dr. Nagler]

Clinically Relevant Bothersome Tinnitus?
Any tinnitus that disrupts one's life. I'm in my 11th month and even though I am much better than I was --and I'm not distressed or in that horrific flight or fight mode anymore--tinnitus still causes me worry and concern. My tinnitus has become cyclical --some days low and some days very loud, making it difficult to habituate to. It's still hard to get over the disappointment when it goes from low to high. I still carry on--I have not missed any work and I continue to live my life--but the joy is being sapped from my life. I think that is relevant.

I think it's incredibly relevant, @Kathi. Thanks so much for your response.

Dr. Stephen Nagler

 

[Katkin]

@Katkin,

Prayers for you. I know how you feel. I am the same way. I had it for 8 years and managed, it was a lower tone, then over the last 4 years it has progressively gotten worse and about a month a go, it took me down. I am off work and a mess. Spent the first week pleading for help and finally after two trips to Emerg I was suicidal. Someone finally listened. Now I am trying to get some strategies in place, but even if it went back to the way it was, I think I could cope better, I did before, its the pitch and intensity. I am crying with you!

Blair

I hope you are feeling better today Blair, I certainly think stress plays a large part in the worsening of tinnitus and stress can take many forms, and it seems to make our brains seek out and amplify more sounds.
Dr Nagler, I hope I haven't hijacked your thread and that my posts are relevant and helpful. Thank you for your support and expertise.[/QUOTE]

 

[dan]

I have clinically irrelevant bothersome tinnitus...

 

[lapidus]

@Dr. Nagler

Isnt all T, bothersome or not, clinically relevant? T is a symptom that something's not right. Often it's because some kind of damage to our auditory system. Even if one is fully habituated, the damage still exists. And because of that damage, people with T are more prone to further damage i.e louder T, H and TTTS. My T has never been bothersome to me, but it's most likely because of my T that I developed severe H and painful TTTS. See what I mean?

 

[Dr. Nagler]

Isnt all T, bothersome or not, clinically relevant? T is a symptom that something's not right. Often it's because some kind of damage to our auditory system. Even if one is fully habituated, the damage still exists. And because of that damage, people with T are more prone to further damage i.e louder T, H and TTTS. My T has never been bothersome to me, but it's most likely because of my T that I developed severe H and painful TTTS. See what I mean?

Hi @lapidus -

You bring up an interesting point. And I understand exactly where you are coming from. Thank you for your considered input.

Looking at tinnitus as a symptom (as opposed to as a disease), I tend to agree with you. I wasn't looking at it as a symptom or as a disease, but rather just as a sound.

I first encountered the term "clinically relevant bothersome tinnitus" in a presentation given by Dr. Jastreboff a couple of years ago in Bruges, Belgium. He and I are getting together for lunch next month. I think I'll ask him exactly what he meant.

Dr. Stephen Nagler