Clinically Relevant Bothersome Tinnitus

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

 

Clinically Relevant Bothersome Tinnitus?

If it's been at least two to three months and it's psychologically distressing and difficult to mask.

 

Thanks, Jay. Appreciate the response.

Does anybody else have any thoughts on what might constitute clinically relevant bothersome tinnitus?

Dr. Stephen Nagler

 

I think we all know how T makes everyone feel. Now lets get severe Tinnitus to become mild and then mild tinnitus to be GONE. I pray for these potassium channels, if its not a full cure fine but at least help those suffering with Severe T to tone down the noise... Were gettin so close. Trt is a saviour and everyone wants to accept but reality is T is not reality and it can go away so clinically relevant bothersum tinnitus does not have to be with proper funding and money put elsewhere. THEN we can all tell trt to take a hike

 

Hmmm..
I guess i can say i had clincally bothersome tinnitus for first few weeks of my T, Now i just have T.
For first few weeks i was kicking and screaming inside my mind for this f××king t to go away.. mentally distrubed to the point i was even having thoughts of jumping off a building cause my t was bothering me so much..
I would rather define it a distrubed state of mind-the period from start of t to accepting the t.
Between that period hell breaks loss dont it..!?
Even people with most annoying t gets to a point where it doesn't bother them anymore, so they can sleep in night without having to take a pill..

 

Thanks for your considered response, Grace.

The day we can all tell TRT, CBT, NTT, TAT, MBCT, PTM, etc. to "take a hike" will be a fine day indeed. You'll get no argument from me there, Grace.

Dr. Stephen Nagler

 

Good points, NG. Thank you.

Any thoughts on what for you were the mechanisms involved in your clinically bothersome tinnitus's becoming just tinnitus during those first few weeks?

Dr. Stephen Nagler

 

Predisposed to clinical depression and anxiety plays a major role. 50 million Americans ? Where are they ? Not here ? Why ? Because they are going on with their lives not giving shit about T. I hope to be in that category one day. How did William Shatner go from suicide to the face of Priceline corp ? How is Bono with severe T just putting out a a new U2 album ? What gives ? Why do I awake up every morning since May thinking about suicide and how I am gonna pull out of this nightmare ?

 

In my experience audiologist are miles ahead of ENT , Neurosurgeons psychiatrist , psychologist in knowledge and caring and helpful. The audiologist blew away the neurologist in the mechanism of the brain . How is that possible when a neurologist spends 14 years of medical school , internship understanding the brain and disorders and is less knowledgeable ?

 

When it consumes you and every aspect of your life evolves around T like it does with me at the moment.

I know it is just a state of mind, started with TRT and mindfullness to accept this new reality, but I struggle every day.

I dream of a perfect world only to awaken to a nightmare, the world upside down.

 

Hi Dr. Nagler,
Thanks for this interesting thread. And for answering our questions, as always.
I wonder if it could be defined as still interrupting sleep, work and life's daily activities after the first few months.
I know that I am more bothered than some, as I am led by my auditory sense, and have always been. When my vision started to blur with age, I couldn't care less. But as a musician and very tuned into sound, the mildest t could bother me. Although 10 months in, I am thankful for mild t compared to the other that sometimes raises its ugly head.
I think also physical elements of t could contribute to being bothersome for many people, i.e. higher volume, fluctuations, reactivity, interfering with hearing in a very relevant way etc.

 

Well to me i like to fight before i give up. .when doctors didnot offer much help i did my research found out all i can about the T. Tried to get doctors to prescribe steroids .. it did not happen
.. did acupuncture for 14 days.. went on hbot for 21 days .. tried all sorts of suppliments i can get my hands on.. did mri and ct scans.. audiometry tests.. and other inner ear tests.. vestibular tests..
Then ran out of money and treatment opinions. . By this time my knowledge grew better ..was sleeping better cause of melatonin.. i threw away the xanax prescribed to me figured its better to stop taking xanax as soon as possible.. my mind also calmed down saying i did what i can to treat it...
In short doing everything i can possibly do and learning everything i can .. it helped me accept that some cure will be found soon all i need to do is wait..my main question to myself is how long and how much do i need to save if at all a cure comes..

 

I thinks it's like you said in your letter. Some people with tinnitus aren't bothered at all, while others with it are.

I would say if tinnitus bothers someone to the point where they're emotionally distressed about it, they have bothersome tinnitus. And the severity can be from being crippled by it emotionally, or even suicidal. And this can be caused from virtually any type of tinnitus, as it affects all of us differently.

 

I would have said all tinnitus would be clinically relevant (as a symptom of another disease/injury that should be looked at), but since you put "bothersome" in there, that changes the definition. In that case the answer is (for me) simply whenever the patient says it bothers them. You'll never define "clinically relevant bothersome tinnitus" by looking at the ways you mention classifying tinnitus: objective v subjective, loud v soft, high pitched v low pitched, severe v mild, etc. because for every single variation of those you will find some who are bothered by it and others who are not.

-Mike

 

Since tinnitus is a symptom, how come docs rarely look into it further than an audiogram? It seems like they quit far too quickly.

For me, it was more or less looking in my ears and giving me an audiogram. After those were normal, it was essentially the door and I gotta learn to live with it.

 

You have to go to a specialist (Dentist, Neurologist) and get several opinions even from another ENT or GP.

 

That's what my first ENT tried to do when I had some hearing damage. I pestered him enough about it to the point that he sent me to a neurologist and then eventually a neurotologist at a local university.

Edit: In about 1 months time I saw my GP (three times or so), an ENT, a Neurologist, Neurotologist, and 3 audiologists. I had several audiograms done, blood work, high res cat scan, MRI, and MRA. You could say I was clinically bothered. lol

 

Interesting question.

So let us assume that the reason you go to the ENT in the first place is because you want to find a cause for your tinnitus that can be corrected and in-so-doing cure your tinnitus. I mean, that's why most folks with tinnitus go to the ENT.

Turns out that - at least to the best of my knowledge - all of the causes of tinnitus falling into that category can be diagnosed by taking a history, looking into the ears with an otoscope, and doing an audiogram. The history, otoscopic exam, and audiogram might or might not lead the ENT to order other tests like possibly an MRI - but by and large that's it in terms of finding correctable causes.

You say that they quit too quickly, but given the above - what else are they supposed to do in terms of diagnosis?

(By the way, in my opinion they oughta do a lot in terms of helping you understand tinnitus and various treatment strategies or at least point you in the right direction - but as I understood your question, you were asking about diagnosis.)

Hope this helps.

Dr. Stephen Nagler

 

T is so subjective; here's a guess...

Any T causing excessive/debilitating anxiety and stress wherein a clear demarcation exists between a person's stated/perceived quality of life prior to the onset of T as compared to their current (stated/perceived) quality of life.



Of course, this is predicated on the unique and subjective criteria an individual uses to measure their quality of life. For example, one person may say sleep is important and they can no longer sleep; or, they used to be very effective at work and now they can barely finish the day, etc. -- in other words, whatever a person states as important to their quality of life and is either mitigated or adversely affected as a direct result of T.

 

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 chose to not accept the standard response and pushed for more answers. I now know the cause of my hearing loss and tinnitus is enlarged vestibular aqueducts.

 

I think it's great that @Michael2013 chose to pursue a diagnosis, if that was his desire. His doctors have told him that the cause of his tinnitus and hearing loss is enlarged vestibular aqueducts.

Unfortunately in 2014 were are not at the point where we have the ability to do anything in terms of correcting enlarged vestibular aqueducts and thereby improve any resultant hearing loss or tinnitus.

What I said in my post was:

"So let us assume that the reason you go to the ENT in the first place is because you want to find a cause for your tinnitus that can be corrected and in-so-doing cure your tinnitus. I mean, that's why most folks with tinnitus go to the ENT.

Turns out that - at least to the best of my knowledge - all of the causes of tinnitus falling into that category [i.e., that can be corrected and in so doing cure your tinnitus] can be diagnosed by taking a history, looking into the ears with an otoscope, and doing an audiogram. The history, otoscopic exam, and audiogram might or might not lead the ENT to order other tests like possibly an MRI - but by and large that's it in terms of finding correctable causes."​

So getting a diagnosis might be reassuring to Michael (and there may be value to Michael in that reassurance), but it means absolutely nothing in terms of an effective treatment for his hearing loss and tinnitus. I wish for Michael's sake that it did, but unfortunately it does not.

Dr. Stephen Nagler

 

That is true... I guess that's why I want to be habituated, incase my tinnitus isn't curable. I really wish I could be at the point where you're at, where it doesn't bother me except maybe occasionally.

 

Good question, @Dr. Nagler.

My opinion, for whatever its worth: For starters, "clinically relevant bothersome tinnitus" is subjective. I don't think (although there are others here who might disagree) it is tied to loudness, pitch, one ear vs both ears, etc. I think what might be clinically relevant bothersome tinnitus to me might be absolutely nothing to someone else with the exact same loudness/pitch etc. Tinnitus, as we all know, is a symptom, not a disease. It's kind of like pain. And most of us would agree that people have different pain thresholds. One person may be able to walk a mile on a broken foot; another may howl when they get a paper cut.

So among my "diagnosis criteria" for CRBT:
* Causes depression or anxiety on an ongoing basis
* Causes the symptoms that come with the above disorders (loss of appetite, extreme fatigue, etc).
* Interferes with sleep.
* Makes it difficult for a patient to work, do routine chores, enjoy activities that once were a daily part of their life
* Impacts personal relationships
* Causes someone to question the quality of their life, generates feelings of hopelessness
* Causes ongoing and distressing ear pain, dizziness, feelings of ear fullness
* Hearing loss, if that hearing loss impacts quality of life

You probably can think of others.
FYI: I want to be clear: I do not think people with CRBT are weaker, less intelligent or more emotional than others with tinnitus who are not bothered by it. For whatever reason, they just respond differently. Again, just my opinion.

Also: As was discussed above, an ENT indeed can do only so much when it comes to diagnosing tinnitus. Once the testing battery is complete (MRIs, audiograms, etc), they pretty much can only say: Yes, you have tinnitus, we do/or don't know what caused it, and whether you have a cause that is treatable.

What ENT's need to STOP saying is, if you don't have an immediately treatable cause is: Sorry, we can't help you. And ENTs continue to say this, all the time. What they need to say is: There are many others out there who can help you. And then have someone in their office who is qualified to point you to the best resources readily available.

Barotrauma from an airplane flight caused my tinnitus. But as far as I'm concerned, my then-ENT caused the panic attacks that followed after diagnosis.

 

Well said Lady Di ,couldn't have put it any better ,I agree,my thoughts exactly ,well written .

 

Intriguing question, @Dr. Nagler

So emotionally debilitating, that it adversely effects their quality of life. Coupled with a fear of doing things to make it worse, because of the lack of support - "how to manage T" knowledge by medical professionals and access to treatment options.

I can't imagine going to a theatre, not sure if I can ever chance flying again, I can't even mow my lawn because if I
put ear protection in it makes it worse. I managed well for 8 years and then it progressively got worse, still no idea why and then a month ago I emotionally went for the plunge after running out of coping skills.

Blair

 

In my opinion if something bothers you in any way (and there's many ways with t) it's clinically significant.

The reality is that t is not a normal state of being, it affects quality of life in so many ways, therefore I doubt that anyone with it can say they are happy and don't mind having it.

And I'm talking T here!

 

Dr. Nagler is correct that there is no cure for EVAS in 2014, but he is absolutely wrong in downplaying the significance of having a diagnosis, especially in my case. Dr. Nagler is not an ENT so I don't expect him to know much about what it means to have enlarged vestibular aqueducts, so that's ok. Have the reassurance that comes along with just knowing a diagnosis is fine, but it was so much more than that. Now that I know the cause, there are specific things I can do (or rather NOT do) to prevent my hearing from further deteriorating and tinnitus from worsening. Knowing the diagnosis for THAT reason is hugely important.

Either way, this is digressing quite a bit from the topic proposed. Going back to the original question, I would say all tinnitus is clinically relevant. Whether or not it is bothersome, as others have also said, is wholly subjective and essentially determined based on how the patient feels.

EDIT: And now that I think about it, had my childhood ENT been able to diagnose this years ago, I likely wouldn't have tinnitus today.

-Mike

 

@Michael2013, it's true that I am not an ENT - but I am not entirely ignorant. At least I hope I'm not!

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

Dr. Stephen Nagler

 

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!