An ENT Doctor with Tinnitus

[John G]

The friends/acquaintances I meet keep telling me "you look great!" - they have no clue what's going on in my head, and offer no sympathy (because they don't "see it").
They think everything's ok.

My friends,family etc are the opposite. They say to me "you look rough" ..."you look the way I feel" ..."too much to drink last night?". What I am saying, T effects people in different ways. Not being able to get proper sleep, trying hard to concentrate with simple tasks with that noise in the head. It's just more than "just noise". I am babbling again

 

[GregCA]

Hi GregCA. Sorry I don't know all the background to your hearing - have you had a stapedectomy for your otosclerosis? I assume from your post that you have cochlea involvement so your bone conduction thresholds are affected too (i.e you don't only have a conductive hearing loss amenable to surgery)?

Yes, did stapedotomy in April this year. I had mixed losses (conductive + sensorineural), and the stapedotomy "fixed" the conductive part (I didn't expect it to fix the SN part). I'm left with SN losses and really bad T.

 

[Ecip]

@brownbear try some lidocaine intravenously. Not sure of the dose, but it will cut your T.

 

[The Red Viper]

Holy moly an ENT that just developed tinnitus recently. Interesting how things work out...

 

[MikeL1972]

I
On a side note relevant for those with sudden sensorineural loss - I got hold of a paper that suggested the presence of tinnitus is a good prognostic sign for hearing recovery - almost as if it is necessary for recovery. It's not the best piece of research I've read but I like the idea that tinnitus is the sound of repair!

This is very interesting and encouraging news. Thanks for sharing, Doctor.

 

[LadyDi]

Hi, @brownbear, and welcome.

I just wanted to mention that one of the most inspirational people I have met on my tinnitus journey was a well-regarded inner ear surgeon about four hours from my home, whom I saw early on in hopes of his helping me. I didn't realize until halfway through my visit with him that he had tinnitus as well; he wore hearing aids/maskers in both ears. While my T was not fixable, he spent a long time with me on my visit and gave me great comfort, advice and hope. My husband and I held each other and sobbed after we left his office. It was a very moving experience. I am crying as I write this, remembering that day.

You will hear some people say unkind things about doctors on this site. But I will be forever grateful to that man. He saved me. You'll be a doctor like that now, too, perhaps, because of your experience and your empathy. Maybe you can set the example, spread the word and help all of us with tinnitus.

 

[Vinnitus]

@Candy. Yes still doing everything I should. No pattern to it. It just seems to be doing its own thing. I really thought that once my hearing improved (which it did), that the tinnitus would fade. Recently it's worse than ever. Seeing many people with tinnitus at work is not helping.

Doesn't this strike anyone as interesting? I have seen and read about various cases where hearing tresholds improved after acoustic trauma or a SSHL-event or even recovered to former values, yet the Tinnitus stayed at the same level as it was since the trigger.

It might be a sign that recovery of stereocilia (which would normally translate to hearing treshold improvements) doesn't necessarily translate into Tinnitus improvement. This might also mean that inner-ear stereocilia regeneration doesn't necessarily reduce Tinnitus and the Tinnitus is triggered and sustained elsewhere. My thinking is that the "hidden" hearing loss (or "synaptic" hearing loss) might have more to do with Tinnitus than the stereocilia. Perhaps even something with the central nervous system. There is too much ambiguity going on to exclusively maintain the classical story that Tinnitus has to do with (damage to) stereocilia and hearing tresholds. Yet, this is the story I was still told when visiting my ENT.

 

[Vinnitus]

I continue to have good days and bad days. I really feel that this does not relate to how I am feeling about it. It genuinely seems so variable. However I think I have identified what makes the bad days bad - it is not so much the volume but the pitch. When it is very high frequency there is no masking it whatsoever. It cuts through everything (even the sacred shower). I guess we just normally hear nothing at such high frequencies so there is nothing very natural to mask it with. I did read that there is not much in the studies to suggest that the volume of tinnitus corresponds well with the emotional impact - so I wonder if the pitch/nature of the sound/variability is more important.
On a side note relevant for those with sudden sensorineural loss - I got hold of a paper that suggested the presence of tinnitus is a good prognostic sign for hearing recovery - almost as if it is necessary for recovery. It's not the best piece of research I've read but I like the idea that tinnitus is the sound of repair!

Could you possibly provide us with a link to that certain paper? Can it be found online?

Thank you.

 

[Dominic1955]

I have been checking by hearing almost daily on an app called SoundCheck, my hearing fluctuate almost daily and when it's down my T is much louder.
There is a link between hearing loss and T
I am taking about intrusive T unmaskable

 

[Candy]

@Vinnitus Agree, additionally think of all people with T with no detectable hearing loss like myself.

 

[Lorac]

I have been checking by hearing almost daily on an app called SoundCheck, my hearing fluctuate almost daily and when it's down my T is much louder.
There is a link between hearing loss and T
I am taking about intrusive T unmaskable

Does your ability to hear diminish because the T increases or is it the other way around...Does your T increase because you experience dips in hearing?

 

[GregCA]

Doesn't this strike anyone as interesting? I have seen and read about various cases where hearing tresholds improved after acoustic trauma or a SSHL-event or even recovered to former values, yet the Tinnitus stayed at the same level as it was since the trigger.

There are multiple stages of amplification in the brain. This is explained in one of the BTA research videos.
You can have a deficient initial signal (for example due to problems in the cochlea), which gets amplified back to "normal". That means your audiogram is not going to show any loss (even though there is).

It's possible that in an acoustic trauma, both the cochlea and the amplification layer gets damaged. When the amplification layer heals, it feels to you as if your hearing "recovered to former values", when in fact your cochlea is still damaged.

 

[Dominic1955]

@Lorac its definitely the hearing loss causing increased T, try it userself on SoundCheck, I hope that eventually my hearing can get stable so I can habituate to a steady T, I had 2 days where my T was maskable and it was amazing! It was probably level 2 vs my constant 10, I would easily habituate to that kind of T
Dom

 

[Lorac]

@Lorac its definitely the hearing loss causing increased T, try it userself on SoundCheck, I hope that eventually my hearing can get stable so I can habituate to a steady T, I had 2 days where my T was maskable and it was amazing! It was probably level 2 vs my constant 10, I would easily habituate to that kind of T
Dom

I have no hearing in my left ear and great hearing in my right ear. My hearing doesn't really fluctuate but my tinnitus does, so when the T is louder it reduces my ability to hear overall.

 

[MikeP505]

Should I win the lottery jackpot at some time, there will be a place for you to relax and recover

Sign me up!! I'd like the presidential suite please! Hey, I asked first!!!

 

[Dominic1955]

@Lorac it's weird that your T changes so much, do u have good days?

 

[brownbear]

Mine is changing MASSIVELY from day to day. One day almost gone, the next absolutely terrible.

 

[GregCA]

Mine is changing MASSIVELY from day to day. One day almost gone, the next absolutely terrible.

I take that as a reasonably good sign. It means your body is capable of going a day without T (almost).

 

[Vinnitus]

There are multiple stages of amplification in the brain. This is explained in one of the BTA research videos.
You can have a deficient initial signal (for example due to problems in the cochlea), which gets amplified back to "normal". That means your audiogram is not going to show any loss (even though there is).

It's possible that in an acoustic trauma, both the cochlea and the amplification layer gets damaged. When the amplification layer heals, it feels to you as if your hearing "recovered to former values", when in fact your cochlea is still damaged.

Sounds plausible up to a certain point, but only if the Tinnitus is not a direct result of this gain-adjustment in the brain, because else I can see some issues.

If you propose Tinnitus being the result of this brain gain adjustment, it doesn't for example explain the cases where Tinnitus abates after longer periods of time. One would say that once this hearing "recovered to former values" by brain amplification as you proposed (causing Tinnitus as by-product of this gain-adjustment), this would stay the same as hearing is not thought to recover and certainly not after a longer period of time. The amplification level provided by the brain should remain at the same level in order to keep providing us with the same level of hearing compared to the pre-damage situation. Yet, there are stories of people where Tinnitus abates after months, years or decades. Their hearing certainly did not recover, and one would assume the gain level needs to stay the same.

 

[slipware]

@brownbear your story is like mine. SSHL. Mine came from a previously undiagnosed heart condition (AF), a TIA cut the blood supply to my cochlea. The hearing, over the four years since, has come back a bit, but distorted. I have a hearing aid which doesn't help the T, (And now warfarin)! My tinnitus yesterday was managable, but today off the scale, if there is one? And aural fullness is also worse. Why, why are some days better, what is different from one day to the next.... it's not the fact we have noise, aural fullness, numbness etc, it's the challenge of every day being different. I'm not habituated, but not anxious or depressed, just fed up. We will get there, if the T stays, fine, I'd rather not have it obviously, but I cope, just wish it would stabilise. One way or 'tother .

 

[Lorac]

@Lorac it's weird that your T changes so much, do u have good days?

Every day of 2016 has been a good day compared to my days in 2013/14! The graph isn't linear though. The noise fluctuates every day but not by huge amounts. I just know that the hearing ability in my good ear is stable day to day. If I have more trouble hearing things today than I did yesterday, it is because of increased noise in my deaf ear (or decreased ability to ignore the noise) and not because of any dips in hearing in my good ear.

 

[SilverSpiral]

Sounds plausible up to a certain point, but only if the Tinnitus is not a direct result of this gain-adjustment in the brain, because else I can see some issues.

If you propose Tinnitus being the result of this brain gain adjustment, it doesn't for example explain the cases where Tinnitus abates after longer periods of time. One would say that once this hearing "recovered to former values" by brain amplification as you proposed (causing Tinnitus as by-product of this gain-adjustment), this would stay the same as hearing is not thought to recover and certainly not after a longer period of time. The amplification level provided by the brain should remain at the same level in order to keep providing us with the same level of hearing compared to the pre-damage situation. Yet, there are stories of people where Tinnitus abates after months, years or decades. Their hearing certainly did not recover, and one would assume the gain level needs to stay the same.

What about cases of reactice tinnittis, where a loud sound wave is hear overtop/covering other sounds at certain frequencies. Maybe if the brains "gain" is reduced to those affected areas, the hearing would return to normal and the reactive t would stop interferring with what you hear ? I'd like for that to be possible.

 

[brownbear]

I'm not having good days/bad days anymore. In many ways looking at the tinnitus itself things are worse. I have a constant loud hissing in my left ear which is modulated by my pulse. It now never stops. I hear it over everything including the shower. When I lower my head even slightly it gets ten times worse. I am now also getting a low pitch rumbling sound in my left ear. In my good right ear (I had a SSNHL in my left ear) I am now also aware of what I might call a more 'normal' type of quiet constant tone tinnitus which I only hear in quiet rooms at night and doesn't bother me. So in short it seems to be messing with me a lot. The hissing in my left ear makes me sound like a broken machine. It is not a sound I have ever heard or can relate to.

HOWEVER, I am finding with each passing week that I am just tired of it and don't give s$%t. I am surprised that as my symptoms worsen it seems to be very slightly losing its grip on me. I am doing formal mindfulness based CBT and I suppose this might be why. Nothing else I have done previously has helped at all.

I really have had enough of it and at the moment I just want to try to live my life. I can't help but think that if I don't try to enjoy my life right now I will look back on this time in a few years with great regret.

 

[billie48]

Thank you for your update @brownbear. As I have posted earlier, this is your body's signalling that your T reaction is now being handled by the pre-frontal cortex instead of the Amygdala, and even with the T still there or slightly worse, your ability to handle the T stimulus is much more normal now.

Like you, I don't give a dime to my T any more and honestly even on the days it spikes to off the chart pitch and loudness when it can be heard over the jet noise in my flights or over the strong raging water of the rapids in the salmon river where I fished, it doesn't matter to my brain a bit any more. It can''t extract one oz of negative emotion nor worry about what it will do next. The brain has hardened to this meaningless irritable sensation which it doesn't consider a threat any more.

With that it just learns to fade out T from consciousness much like how we can tune out the loud jet noise during watching a movie even when that loud noise is all encompassing around us. It takes time to get there, and you are obviously progressing nicely towards that ultimate habituation. Yes, mindfulness and CBT have done wonder for me too even though mine is basically on self-help basis. When the fear of T is gone, and when the brain is hardened to that intrusive sensation, its tyranny over us is over, and time is on our side.

When we don't supply more fuel for T to generate more stress and anxiety over it, somehow miraculously over time, T will become less and less of an issue for many, and that is why there are many success stories even for those with nightmares of initial suffering at the start. Take care. God bless.

 

[Lorac]

Hello @brownbear and thanks for the update! I'm glad you are feeling somewhat better and I apologize for the many negative comments on this forum directed at ENT doctors. Often, there are just no good options for medically treating our condition and some members are very frustrated by that. Like you, my only real help came from a therapist and I would love to see more referrals from ENT doctors to qualified psychologists, and better insurance coverage for the sessions. In the beginning, T is more than just noise. Many new patients are afraid and depressed and possibly suicidal.
I have had to make adjustments to my lifestyle but I agree that we should push forward with our lives as best we can because we cannot go back and relive missed events, missed relationships, missed time.

 

[Dominic1955]

@brownbear , how are you ?
I may possibly also have cochlear hydrops
Do you have fluctuating hearing loss and how bad?
Do you experience aural fullness?
T is very loud with hypercusis ?
I also a physician, but I can get any straight answers from my associates
Have you tried dyazide?
What is the prognosis? I had for 7 months and had a few days where there is an improvement in hearing and felt well .
D

 

[brownbear]

@Dominic1955 . My sudden hearing loss ranged from 40db in the low frequencies down to about 70db in the high frequencies. This came back to normal after oral and intratympanic steroids. For weeks afterwards I was getting aural fullness and the feeling that my hearing was dropping several times a day, but when it was tested it has remained fairly stable so I decided not to keep having it checked as it was stressing me out!

I don't have hyperacusis I think - but I do find that any attempt to mask the sounds seems to ramp up my tinnitus so I have abandoned masking/blending and I am happier for it as I feel more in control.

I tried betahistine which made no difference. I haven't had a diuretic.

The trouble with prognosis I think is multifaceted. For one thing we don't know for sure if we even have hydrops. Even if we did know for sure, the more I read about tinnitus the more the cause seems irrelevant and it just does its own thing and is different from one person to another. Our cases are a good example - both had SSNHL, my hearing came up, yours sadly didn't, and yet we both seem to be battling very challenging levels of tinnitus. I suppose that is why our colleagues don't really know how to guide us. For this reason I am trying my best not to think about treatment and timelines.

 

[GregCA]

Even if we did know for sure, the more I read about tinnitus the more the cause seems irrelevant and it just does its own thing and is different from one person to another.

I really do mean no offense, but you do need to read more, especially because you are an ENT surgeon, whose specialty is the Ear. It really is your business, and you need to know that the causes for Tinnitus are very relevant. Believing the opposite is what leads to shrugs, throwing the hands up in the air, and telling your patients that they just have to go home and live with it.

To give you an example, if you have otosclerosis as the cause of your T, then you roughly have a 50/50 chance of making T disappear if you undergo a stapedotomy (there is also a minute chance of making T worse). Your odds are higher if your T is in the lower frequencies. Pubmed is an awesome resource (one example here), and I would assume as a surgeon you have access to maybe even more data.

Similarly, if you have cochlear otosclerosis and you undergo a treatment that addresses the bone remodeling process happening in your ear, you can also help your T (it also helps arrest the loss of hearing, but that's another topic). The treatments I have read studies about are Fluoride, Bisphosphonates (especially 3rd generation - there is even a patent about how to administer for best results), and bioflavonoids. All show a fraction of the patients responding well (as in, showing a significant improvement in their T symptoms) to treatment.

Here is a diagnosis flowchart for your perusal. You can use it for your own case as well as your patients'.

It's really important for you and your colleagues to start understanding that this condition does have a root cause (hopefully nobody disputes the existence of cause and effect logic) and that if we can find it, it can sometimes be fixed.

I'm sorry if this sounds harsh, but as a surgeon specialized in ears, you really should know this.

 

[The Red Viper]

@GregCA Agree that as an ear surgeon he should know this. I hate to admit this but I'm kind of feeling schadenfreude at his situation right now.

 

[brownbear]

Hi GregCA. Thanks for your message. I can see how my message seems defeatist. I have already posted before about there being many cases where tinnitus can be effectively reduced or eliminated when the underlying cause is treated. Unfortunately for me I am at the bottom of the flowchart. My underlying sudden hearing loss was reversed but my tinnitus has worsened. In my case, maybe not for others, I think I may be at a therapeutic dead end. I am trying my best to move forward but it's tough.

As a side note I have become rather addicted to following this forum and have been trying to wean myself off. You may have just given me the inspiration I need.