Is It True About Centralization?

I don't know if I'm right about this, but I read that when the tinnitus becomes centralized (meaning you hear it in your head more than directly in your ears) it becomes more difficult to treat?

 

Meaning more difficult to habituate to?

 

No, I mean to get treated better, maybe finding a cause easier. I'm not able to habituate, since my T changes daily, and now it's becoming more in my head. My head and ears also feel hot yet there's no fever.

 

That is what I think I read in a few places too (when I was reading about this stuff a couple of years ago). Although, I believe it is an open question whether the tinnitus would improve if there really was a way to successfully treat hearing loss. I got the impression that the pathological synchronisation of neurons spreads over time to affect other areas of the brain, making it harder to eradicate. I'm not too clever at understanding this stuff, so don't take what I say too seriously unless it chimes with other things you read. I suspect that there is no single unambiguous answer to this question, but that generally speaking you are correct.

 

I never understood this mechanism and wondered about this myself.
It is always in your brain. It is in your brain where the neurons fire franticly because there is no input any more from the ears.
I wonder if people that have different tinnitus frequencies in different ears can ever experience tinnitus inside the brain. So as an example 4 kHz in left ear and 8 kHz in right ear. You will always experience tinnitus coming from the ears in this situation????
I know (this is probably far fetched) when you are using headphones with music in phase you experience the sound in the centre of your head ( inside the brain experience). When the music is out of phase you experience the sound coming from both ears (ears experience). Like I said, perhaps far fetched and not the mechanism that is working with tinnitus.

 

I understand what you're saying. But my sounds aren't necessarily central. The sounds in my right ear are different than the sounds in my left, and both of those are different than the sounds in my head. Basically, I'm bombarded with sound.

 

Sorry to hear that. But I still do wonder if it really is more difficult to get rid of tinnitus if over time it gets central (when tinnitus frequency in both ears is the same) or you experience the tinnitus in your ears.
Actually the way it is now. We can not get rid of tinnitus one way or the other. Only habituate.
Perhaps this AM-101 is the first drug that can do something.

 

I know this is a weird question but is it possible to promote centralization. I currently have ringing in both ears but feel like if the sensation moving into my head even just the left and right portions of my skull it would be easier to habituate. Any thought?

 

I've never had it in my ears... it started and stayed in my head.

 

Not really having it in the head is often worse, because you can feel your whole head vibrating to the sound

 

Just so you know, you have created a false expectation. Finding a cause...which is almost impossible and debated on forums like this is...pretty immaterial for the simple reason, treatment is in absence of a cure. There is no cure for any kind of tinnitus...though anecdotal accounts do occur from a very small percentage where their tinnitus stops.

My advice which you can accept or not is, stop looking for a cure and treatments. If you want improvement in your quality of life, get help with your mental health either in therapy, lifestyle and diet changes and/or medication.
Also your changing tone tinnitus...my tinnitus changes tones once in a while as perhaps most with this do....I have habituated on some level. Each week I probably become more at peace with accepting my tinnitus. So, accept no road blocks on your path to accepting tinnitus as part of you. Perhaps one day there will be viable treatment, better diagnostics of each with different tinnitus types and perhaps ultimately a cure. And of course we all hope for that day soon.

 

That is not true.
Otosclerosis is a disease that often brings tinnitus. That tinnitus is cured in about half the time after a stapedotomy. No habituation here: real cure.
There are other examples.

Here are different options when it comes to etiology of Tinnitus:

1. Unknown etiology: if we don't know what causes it, we don't really have an option to fix the root cause, so no cure
2. Known etiology, but no known fix: this is unfortunately common, especially with noise induced hearing loss, so no cure
3. Known etiology, with known fix: this does have a chance to get cured

If you are in #3, then there is a cure for you. Whether it works or not is another question, since no treatment works 100%.

 

I stand corrected Greg when it comes to Otosclerosis which I believe you were diagnosed with.
Perhaps you could share some probabilities with us. Please quote the probability in the statistical distribution of tinnitus, what percentage are diagnosed with Otosclerosis? Then, please calculate for this percentage whereby Otosclerosis is their diagnosis, subtract how many are not cured by surgery and then post what this overall percent is for those with tinnitus. OP, here's a hint. This is a very small number.

Lastly, please share with the OP how successful your particular stapedotomy was to curing your tinnitus if you care to. The reason why this matters btw, is because it may not even be possible to assign an underlying cause for tinnitus at the present time. You may have multiple etiologies, one of which may be incurable and why performing a stapedotomy did not resolve your tinnitus.

As to no. 1 you quote, what you wrote isn't true either if you prefer to use this vernacular. Just because tinnitus doesn't have a known root cause which probably applies to the vast majority with tinnitus which is generally related to some level of hearing loss, you forget that some undiagnosed people have had their tinnitus go away after having tinnitus for a period of time. So natural cures by change in in a person's body have occurred.

as to no.3, you write of very low probabilities. Aside from Otoscelerosis, a condition I believe you were diagnosed with, surgery was performed and I believe you weren't cured.... perhaps you could elaborate on what types of etiologies once diagnosed, get cured. I am sure the entire forum would love to know.

So OP, to reframe just a bit, if you want the so called truth that Greg speaks of, no.2 he writes about above is the real truth about tinnitus.
Very few are cured with tinnitus, known etiology or not. Therefore to contribute greater truth to no.2 that Greg posits which is really the signature tenant to tinnitus and not the exception, I will take the liberty to revise Greg's no. 2 accordingly:

2. In the vast majority of known etiology which is often misdiagnosed by experts because there can be even more than one etiology which precipitates tinnitus, there is no cure. This is why this forum has such a high population with tinnitus and ENT"s are in general...those that study tinnitus in school...are pretty useless to eliminate tinnitus in spite of copious testing many pursue.

Finding a cure for tinnitus by the scientific community is of course greatly significant for human kind both present and future. But current medical practices are seriously lacking to accurately diagnose the cause of tinnitus and for the vast majority with even an accurate diagnosis if this is even possible, very few get treated successfully.

Instead, as I wrote earlier in this thread, focus on 'your reaction to tinnitus' which in effect becomes part of us and with time and acceptance plays a much smaller role in our lives. A part initially in particular most reject and why they struggle. Its not easy to accept a flaw so many of us want to extinguish. But this is what we are dealt and pretty much all we have. This is only achieved through acceptance and objectivity through good mental health. This is why mental health should be your focus OP independent of your tinnitus. The two can be related however seeking the path to habituation...a word often criticized...the cornerstone being acceptance of tinnitus, this is the closest thing we have to a cure at the present time. Hope that makes sense.

 

Sorry, it doesn't sound like this is heading in a good direction. Sorry that I corrected your statement, although it's still incorrect to say that there is no cure for any kind of Tinnitus. I think you do agree with that, so I'm unsure why the unnecessary poking.

I didn't mean to get into a long winded nit picking about statistics, just trying to be a little more positive and truthful when telling someone that there is no cure for any kind of Tinnitus, which brings down any hope to the sufferer. I won't argue that the amount of "fixable cases" is small, but small chances give more hope than zero chances, in addition to being the truth. It also encourages patients to go and bug their doctors about it, which raises awareness, instead of just staying home frustrated and depressed.

One thing I often point sufferers to is the Diagnosis Flowchart, which I find very helpful to understand the different etiologies and treatments. It's amazing how complex this can be: I feel that blanket statements about Tinnitus (especially those that are not just incorrect, but can be very discouraging), are unhelpful at best, but can also be harmful (I'm not thinking of your statement in particular here).

My take is that they lead to our own medical profession not taking us seriously, and telling us that it's a minor issue that can be willed away and that there is no cure for it anyways, possibly withholding the basic minimal effort required to try and diagnose a root cause.
Instead, I think it behooves us to educate them in the fact that some cures do exist, and that the very least they could do is to try to find a root cause.

Hope this makes sense. Again, I'm sorry if I offended you when I offered my correction.

 

Thank you Greg. No, I am glad you responded because we are here for truth and not wishful thinking. The fact is...what you wrote above...precisely your words....the amount of "fixable cases" is small. I will say further, the only thing worse than not giving somebody hope is giving somebody false hope. That is why an accurate portrayal is important. So OP to revisit, for the vast amount of those with tinnitus, there is no cure. Yes, there can be cure for a very low percentage and each person will have to determine what amount of testing aka time and money to invest to determine if there is any opportunity for a cure for them. A personal decision.

I will say further that I believe it took guts for you Greg to perform your surgery and you have my respect for that. Few have researched tinnitus in greater detail and I believe you do a lot to increase awareness about the tradeoffs of tinnitus on this forum as a service to those desperately seeking answers to a disorder that largely has very few answers. Thanks for that.

 

there are no better or worse outcomes depending on where you perceive your tinnitus. one would argue that some are harder to deal with, but your prognosis for cessation is the same : poor.

 

It seems to me there's quite a few shades of gray between giving no hope and giving false hope.

That's exactly what led me to correct your statement. We're on the same page.

I appreciate the acknowledgement. The surgery was certainly not a fun time, and I'm glad I didn't suffer from bad side effects. It did get me some hearing back and curbed down my hyperacusis, so I think it was positive overall, even though I am obviously disappointed that it didn't resolve my T. Now that I'm more educated on otosclerosis, I do understand better why my chances of resolving tinnitus where actually lower than most people who have otosclerosis. That being said I'm not sure it would have deterred me from the surgery.

 

Why were your chances lower Greg might I ask? At least it toned down your H so that's a bonus.

 

Also your right about T being cured, I know off the top of my head of at least 6 people who cured their T, not habituate but cured like you said.

 

Speaking of hope, false or otherwise, I am reminded of Christian who went in for shock treatment...apparently a trial performed in Sweden. He said two subjects came away with such severe tinnitus that were having a hard time surviving. Clear the efficacy of your surgery had a bit more established track record even though percentage wise many subjected to a stapedotomy...their tinnitus doesn't improve. I believe we live in the times of the stone age of discovery relative to tinnitus and each of us has to be weary of jumping on the bandwagon of any new treatment coming down the road which may have unintended consequences not vetted. People signing up for trials as in Christian's case come to mind.

 

Believe it or not, stapedotomies have been performed for over 60 years now (they were stapendectomies back then), so we do have quite some data to look at for risk vs reward assessment. The technique has evolved considerably in time of course, and so have the statistics associated with it. As expected, they got better/safer. It used to be a stapendectomy which was a bit more invasive, and we now generally use lasers instead of drills, but the principle remains the same.
Still, as of today, it's not a completely safe procedure, but nothing really is. It's always a gamble, but here the stakes are quite high.
In my case, because my disease is of the nasty kind that also attacks the cochlea, I do suffer from sensorineural losses and Tinnitus that is most likely due to that. It affects a minority of otosclerosis patients, but I guess I'm unlucky enough to be part of them.

Certainly.
I suspect the risk we are willing to take is somehow positively correlated with the suffering we experience on a day to day basis. This is why we see people who suffer enormously (you mentioned Christian) willing to take unbelievable gambles on unproven treatments: they feel like they have nothing to lose anymore.
I seems quite logical to me.

 

Because my hearing loss was mixed pre-surgery: that means I had losses both in the middle ear (conductive) and in the inner ear (sensorineural). Most people with otosclerosis only suffer from conductive losses and the tinnitus is often the result of the mechanical pressurization of the perilymph fluid in the inner ear by the stapes. That tinnitus is usually lower frequency. When the mechanical problem gets resolved the tinnitus related to it is often resolved too (in about 50% of the cases).
In my case, the tinnitus was predominantly in the high frequency and I had (and still have) sensorineural losses in the high frequencies, due to the disease attacking the base of the cochlea (where the stapes gets ankylosed too), which is where the high frequency sensory apparatus resides.
So a big chunk of my T was sensorineural, and of course the surgery didn't address that, nor would it be able to, since it only operates in the middle ear.

 

Oh yes, I know a few too (not personally, just from the net). There are a few etiologies for which we have treatments. They may not always work, but there is at least something to try.
What's bothering me about the "go home there's nothing we can do for you" attitude from doctors is that they may be telling this to someone who could potentially benefit from a real treatment and a real cure, if only they bothered doing a deep diagnosis, and go through the - admittedly painful - debugging process.
For this reason I always encourage people to educate themselves on this condition and challenge doctors appropriately. Nobody else will have the same incentive to keep pushing the envelope to find something that, if not cure, may help alleviate the symptoms.

I realize that in many cases T is not fixable, but studies (and tons of anecdotal evidence on the internet) do show that some things do work for some people. 15% success rate here, 20% there, etc - it seems like the patient should be the one deciding whether or not s/he wants to undergo this or that treatment, not the doctor glossing over it as if it didn't exist.

Finally, a 100% cure is not the only positive outcome: I bet many of us here would be happy with some amount of reduction, even if not total.

 

In bold, yes, a correlation between level of suffering and willingness to take a risk on unproven therapies but I believe absent from their calculus is the prospect their tinnitus can actually grow worse as in the case of a couple of the participants in Christian's trial. So the allure of improvement with unvetted therapies intended to bend the arc of neural pathways can actually excite neurons specific to the auditory cortex. With time, location of neurons responsible for tinnitus frequencies will be better identified and hopefully more viable strategies to target these neurons.
To me, the practice used in the Swedish trials was primitive and unfocused.

Greg, you mention your disease. Can you share what it is and is there any way to predict its trajectory moving forward?

 

@stophiss
The trial was in Belgium, not Sweden.

 

Do you have overall results of the trial lapidus?...who was helped and by contrast, what subset of the human trial their tinnitus was made worse?
thanks

 

No, and I'm not sure it was a real "trial" per se either. If I understand correcly, Chrisitan went to get that treatment at the brai2n clinic in Belgium. Do a search for "brai2n" here on TT and see if you can find anything.
It's discussed in several threads but here is the main thread about the clinic and its treatment:
https://www.tinnitustalk.com/threads/brai2n-tinnitus-clinic-in-belgium.7/

 

Thanks lapidus. Troubling that electric therapy caused tinnitus to get worse for 2 patients and made no difference for Christian. No doubt it evolved with some level of improvement at least for some.
Proceed carefully I suppose is the lesson to all when it comes to proposed therapies that 'may' help.
Thanks again.

 

I don't know about others, but I've always considered the "making T worse" factor as part of the risk profile. When I did my stapedotomy, there were stats about % of patients whose T worsened after surgery. I was aware of that risk.

It's listed in my profile, as "Cause of Tinnitus": it's otosclerosis.
Mine has attacked the cochlea (in addition to the middle ear), which means I'm going to lose my hearing progressively with time, with nothing that can be done (it's sensorineural losses). T will probably get worse as well. Most likely the other ear is going to start to show symptoms soon too.
In other words, pretty bad prognosis.

 

I suppose only you know the pace of your disease but as you know the same disease from person to person doesn't have the same pace....whether MS, heart disease, cancer or plethora of others.

So I hope Greg your progression is slow if not goes into some level of remission...that in convergence with a change in emerging treatments which may further arrest or reverse your condition....be it stem cells or another approach.

Wishing you well.