Bilateral Tinnitus May Be Hereditary

[Samir]

Fresh research results from Sweden! Cederroth and his team from Karolinska have found evidence that bilateral tinnitus is hereditary.

Researchers have been able to demonstrate the hereditary nature of certain forms of tinnitus. Bilateral tinnitus - that is, tinnitus in both ears - has been shown to depend on genetic factors, particularly in men. The twin study, which is published in the journal Genetics in Medicine, was conducted by researchers at Karolinska Institutet together with colleagues from the European research network TINNET.

Source: https://www.eurekalert.org/pub_releases/2017-03/ki-bti030917.php

Swedish readers can have a look here: http://news.cision.com/se/karolinska-institutet/r/tinnitus-i-bagge-oronen-arftligt,c2207633

One interesting thing I found when comparing the texts is the use of the words demonstration, proof, and evidence. The Swedish text makes it sound like they have scientifically proven this. This may not be true. But it is an interesting result. (I am TT version of Sheldon Cooper comparing child and adult editions of the same book just to make sure there are no differences.)

Publication: "Genetic susceptibility to bilateral tinnitus in a Swedish twin cohort"
http://dx.doi.org/10.1038/GIM.2017.4

Note! The publication hyperlink ends with a 404 error. If these numbers mean what I think they mean the full text won't be available until April.

 

[Ian Mac]

Just remember if it's bilateral it's in your brain, if it's unilateral you have a physical issue in your ear or blood vessels. Both Ears is permanent and it's also not that bad (compared to fluctuating Menieres type T).

Bilateral? It's in your brain, get on with life. Unilateral? Time to see the Otologist (ear neurologist).

 

[Kekistan]

Just remember if it's bilateral it's in your brain, if it's unilateral you have a physical issue in your ear or blood vessels. Both Ears is permanent and it's also not that bad (compared to fluctuating Menieres type T).

Bilateral? It's in your brain, get on with life. Unilateral? Time to see the Otologist (ear neurologist).

How do you know what kind you have?

 

[Alue]

Wouldn't it be more accurate to say 'bilateral tinnitus can be hereditary'. I can think of ways to give people bilateral tinnitus without it having to be hereditary...

 

[WildMan]

Wouldn't it be more accurate to say 'bilateral tinnitus can be hereditary'. I can think of ways to give people bilateral tinnitus without it having to be hereditary...

Head phones, rock concerts, guns are good ways to destroy both your ears. I have T in both ears and I don't feel as if it's in my head at all. My T is literally in my ears and sometimes I can feel/hear this short circut sound inside my left ear.

 

[Foncky]

Just remember if it's bilateral it's in your brain, if it's unilateral you have a physical issue in your ear or blood vessels. Both Ears is permanent and it's also not that bad (compared to fluctuating Menieres type T).

Bilateral? It's in your brain, get on with life. Unilateral? Time to see the Otologist (ear neurologist).

And you seem to be serious...

 

[CederrothCr]

Hello Samir and Alue,
correct that is should be "bilateral tinnitus can be hereditary" - a problem in the Swedish to English translation. This has been corrected.

http://ki.se/en/news/bilateral-tinnitus-can-be-hereditary

With regards to the availability of the paper, Nature Publishing Group has had several technical issues with their online releases. Should be fixed soon.

 

[Ian Mac]

And you seem to be serious...

I am FUNKY. As you learn more you will understand. Central is brain. Do you hear a noise in one ear but not the other, it's tonal, well that can't be in your brain. That's in your ear.

tinnitustalk.com oh will we ever remove ourselves from ignorance. It's depressing the lack of knowledge on this site.

 

[Ian Mac]

How do you know what kind you have?

If you have to ask then your's is central brain, the common kind, caused by the brain adapting to minor damage from too loud noises. LUCKY YOU! No matter what loud music can only do minor damage, now virus, bacteria fungus, autoimmune attacks, can truly destroy the not only the hair cells but the auditory nerve itself, resulting in truely suicidal tinnitus. Just hope you only have loud music tinnitus because it always minor in comparison to true destruction.

Yours must be central I.E. in your brain because when it's in one ear, and especially tonal, you notice, and cry a lot. Like this "why oh why can't I just go back to having normal tinnitus"??

Basically I'm trying to say it could be soooo much worse, truly unimaginable the sounds your ears can make. Like going to a techno concert - your ears can make sounds you never knew existed.

 

[Foncky]

I am FUNKY. As you learn more you will understand. Central is brain. Do you hear a noise in one ear but not the other, it's tonal, well that can't be in your brain. That's in your ear.

tinnitustalk.com oh will we ever remove ourselves from ignorance. It's depressing the lack of knowledge on this site.

If the place is depressing, Professor, what are you looking for here ?

I have massive damage due to noise exposure and acoustic traumas. At first it was in one ear, now in both. It's tonal. Multiple sounds. Changing every second.

The people who brag about how they have all the knowledge and the others don't have a clue are often not that smart and not that knowledgeable. One thing you should have learned with T : we shouldn't make strong assumptions about it. We are only in 2017 and things are evolving fast.

By the way, it's "Foncky". So many people have it wrong, what's wrong with my nickname ? Again a brain thing I believe !

 

[Ian Mac]

If the place is depressing, Professor, what are you looking for here ?

I have massive damage due to noise exposure and acoustic traumas. At first it was in one ear, now in both. It's tonal. Multiple sounds. Changing every second.

The people who brag about how they have all the knowledge and the others don't have a clue are often not that smart and not that knowledgeable. One thing you should have learned with T : we shouldn't make strong assumptions about it. We are only in 2017 and things are evolving fast.

By the way, it's "Foncky". So many people have it wrong, what's wrong with my nickname ? Again a brain thing I believe !

Sorry Foncky, I just thought funky sounded better. How is it possible that permanent damage creates a changing noise? Perhaps you have cochlear hydrops (no not meneiers). How can hurting your ears in the way they were meant to be used, listening to sounds, be worse than straight bacterial damage to your auditory nerve? It can't, really. Oh how I would love to go back to normal constant loud high pitched old TV tinnitus like I used to have, I had no idea the spectrum, how bad it can get, and I'm barely scratching the surface, god it could be soon bad. it's scary. Tinnitus from loud music? Sorry but it just can be that bad in my estimation, perhaps I don't know, just like nobody knows anything about tinnitus until they hear a certain sound and then assume that everyone has the same tinnitus.

I literally hear a bird in my right ear, just my right ear, he's loud and I don't sleep. My left ear has the finger on a wine glass sounds which is not bad at all, and I have central brain tinnitus from loud music. And it still could be so much worse.

 

[Alue]

If you have to ask then your's is central brain, the common kind, caused by the brain adapting to minor damage from too loud noises. LUCKY YOU! No matter what loud music can only do minor damage, now virus, bacteria fungus, autoimmune attacks, can truly destroy the not only the hair cells but the auditory nerve itself, resulting in truely suicidal tinnitus. Just hope you only have loud music tinnitus because it always minor in comparison to true destruction.

Yours must be central I.E. in your brain because when it's in one ear, and especially tonal, you notice, and cry a lot. Like this "why oh why can't I just go back to having normal tinnitus"??

Basically I'm trying to say it could be soooo much worse, truly unimaginable the sounds your ears can make. Like going to a techno concert - your ears can make sounds you never knew existed.

I'm sorry but you really don't know what you are talking about. I know you suffer from intrusive tinnitus and it sucks, but stop acting like you are the only one suffering and if someone's tinnitus has a different etiology it couldn't possibly be as bad as yours.

 

[Ian Mac]

I'm sorry but you really don't know what you are talking about. I know you suffer from intrusive tinnitus and it sucks, but stop acting like you are the only one suffering and if someone's tinnitus has a different etiology it couldn't possibly be as bad as yours.

Darn. I thought I nailed it! ?

 

[Ian Mac]

I'm sorry but you really don't know what you are talking about. I know you suffer from intrusive tinnitus and it sucks, but stop acting like you are the only one suffering and if someone's tinnitus has a different etiology it couldn't possibly be as bad as yours.

Alue do you also hear vibrating noises from loud music like him? Im just saying if your T is bad, and I believe yours is, and you still haven't habituated, it's probably more than just the whole loud music bit.

 

[Foncky]

How is it possible that permanent damage creates a changing noise? Perhaps you have cochlear hydrops (no not meneiers).

Maybe, who knows ? An ENT doctor told me that I had something like that but it was only because he refused to admit that noise can cause massive and permanent damage.
My ears were never quite normal though. Before my first trauma I had some distortion and saturation around loud noise. But no H, no T and no particular hearing loss before the trauma.

How can hurting your ears in the way they were meant to be used, listening to sounds, be worse than straight bacterial damage to your auditory nerve? It can't, really.

They were not made to handle noises at 140dB or more.
Why would you refuse the idea that a massive noise can start a tsunami inside the cochlea, just like a powerful drug would ?
You have no scientific evidence to say all this, I don't get the point.

Tinnitus from loud music? Sorry but it just can be that bad in my estimation, perhaps I don't know, just like nobody knows anything about tinnitus until they hear a certain sound and then assume that everyone has the same tinnitus.

If you want me to say that your T is worse than mine, fine ! I don't care really. I know how mine was after the first trauma, I know how it is now after the second trauma and I can hear the difference, unfortunately. I describe it as it is and I'm not assuming anything, I'm not a scientist.

 

[Tom Cnyc]

@Ian Mac - we all appreciate the level of intensity you put into this... but JUST MUSIC can cause SEVERE tinnitus. I know you had mild tinnitus from music and then had a viral issue or something to that nature that made it much worse - however your experience is simply ONE anecdotal experience.

I have the same jangling moving sounds as you FROM JUST NOISE. They come and go. Some days I'm fine. Others I'm not. Noise damage does not simply cause one sound. It's not that simple.

I've seen every type of doctor. Neurologist, Otologist, Audiologist, ENT, DPT, Chiro, etc. It's nerve damage. It acts funny.

Head tinnitus is just stereo tinnitus. if its balanced it feels like your whole head - similar to closed headphones. If its more in one ear the panning is more obvious. Think OPEN headphones.

I think because so many here are suffering so much we all start to overthink this. Throw some lack of sleep into the mix and it's easy to go off the rails.

 

[Candy]

Very interesting, at the BTA conference the ENT told us no genetic link had been found, yet a dad and daughter were there and the daughter had t from a young age, no obvious cause.
My brother has t as well...

 

[Foncky]

My sister just got T, right after a sore throat

 

[PatrickG]

Alue do you also hear vibrating noises from loud music like him? Im just saying if your T is bad, and I believe yours is, and you still haven't habituated, it's probably more than just the whole loud music bit.

I thought you got a little bit better after the treatment?

 

[just1morething]

@Ian Mac - we all appreciate the level of intensity you put into this... but JUST MUSIC can cause SEVERE tinnitus. I know you had mild tinnitus from music and then had a viral issue or something to that nature that made it much worse - however your experience is simply ONE anecdotal experience.

I have the same jangling moving sounds as you FROM JUST NOISE. They come and go. Some days I'm fine. Others I'm not. Noise damage does not simply cause one sound. It's not that simple.

I've seen every type of doctor. Neurologist, Otologist, Audiologist, ENT, DPT, Chiro, etc. It's nerve damage. It acts funny.

Head tinnitus is just stereo tinnitus. if its balanced it feels like your whole head - similar to closed headphones. If its more in one ear the panning is more obvious. Think OPEN headphones.

I think because so many here are suffering so much we all start to overthink this. Throw some lack of sleep into the mix and it's easy to go off the rails.

You are probably right. I wonder if we will ever have a fix for this if it's nerve damage? I thought mine could be related to spinal facet joint damage sending signals to my brain, but still unsure. Desperation. It seems Otonomy and Auris Medical are bombing so where's our hope if it's inner ear caused?

 

[Lex]

How can hurting your ears in the way they were meant to be used, listening to sounds, be worse than straight bacterial damage to your auditory nerve? It can't, really.

If you look at the sun for too long, don't you think you'll cause damage to your eyes even when they're meant to be used for looking at stuff? When you drink too much whiskey, don't you think your liver will give out even when it's meant to metabolize alcohol? If you consume too much water, don't you think you'll die from water intoxication even when your body is meant to live on water?

Asking for a friend.

 

[Niklas]

Hello Samir and Alue,
correct that is should be "bilateral tinnitus can be hereditary" - a problem in the Swedish to English translation. This has been corrected.

http://ki.se/en/news/bilateral-tinnitus-can-be-hereditary

With regards to the availability of the paper, Nature Publishing Group has had several technical issues with their online releases. Should be fixed soon.

Welcome to the forum Christopher!

Looking forward to read more about your researches in the future. It would be fun if tinnitustalk could get the opportunity to get a interview with you some day.

 

[Samir]

Hello @CederrothCr ! Welcome to the forum!

I did not know you too had tinnitus. What is your tinnitus like?

The quotes below are taken from the Eurekalert page.

Ringing in the ears, a condition called tinnitus, is experienced by 15 per cent of people in Sweden as well as in Europe.

Same percentage in Sweden as in all of the Europe? I would expect more variation between different countries of Europe. What data are these numbers based on? Also, how do countries record how many of their citizens have tinnitus? I think there is a very good chance that the numbers may be even bigger.

Tinnitus prevalence increases with age and is thought to be related to a number of environmental factors but little research has been done on the subject.

What are these environmental factors?

There are also no effective cures for the condition, due possibly to the heterogeneity of the condition.

To cure a disease, you have to fully understand it. Better understanding is necessary in order devise an effective treatment.

Heterogeneity itself is not the reason why there is no cure and no effective treatment for tinnitus. Our lack of knowledge and understanding is the real reason. Heterogeneity poses a question, not an solution. It's a postulate!

I think it's important to investigate different leads in tinnitus research, including that of genetics. But it seems to me as if this study is minimizing the importance of hearing loss, and more importantly traumatic events that cause hearing loss. It's though as if tinnitus is a natural occurrence without any external triggers. I don't believe that! Similar to how people can carry genes that can cause a disease but don't get the disease unless it's triggered by activating the dormant genes, people prone to tinnitus for a genetic cause will likely not get it unless it's triggered in some way (noise, drugs, antibiotics, trauma, stress, etc.).

We've been able to show that different forms of tinnitus have a significant heritability and thus a dominant genetic influence over environmental factors

Does this mean that if one twin is exposed to noise pollution and one is not they are both likely to develop bilateral tinnitus over time?

Unless the tinnitus is unilateral... then only one or none of them will develop tinnitus. What decides if you get one form or the other? Is that driven by genetics too? Or is that attributed to external events for which no genetic correlations have been found yet?

How can we categorize tinnitus as unilateral and bilateral? What about tinnitus that feels like it's in the middle of the head? Medial tinnitus? What about tinnitus that starts as unilateral, but then turns to contralateral, then bilateral, then medial?

I can't help but feel like this study is trying to make the last fit the shoe, instead of the other way around. Maybe I don't understand it yet. I will have to read the full article when it becomes available.

Tinnitus sufferers need better care and treatment than they're currently getting.

I agree! But I didn't get any at all! Not even counseling. I learned about CBT and TRT on the web. I have still not received any therapy or counseling. I would not know where to turn for help anyway. I have had my round of GP, audiologist, and ENT doctors. None of them offered any help with tinnitus. No medications, no psychiatric evaluation, nothing... just that my hearing is symmetrical, with normal thresholds, and only slight unilateral hearing loss in the high frequency. The ENT told me to just go home and try not to think about it. The best would be to forget about it he said. So I am learning to deal with this on my own now.

 

[EddieMar]

Hello @CederrothCr ! Welcome to the forum!



I agree! But I didn't get any at all! Not even counseling. I learned about CBT and TRT on the web. I have still not received any therapy or counseling. I would not know where to turn for help anyway. I have had my round of GP, audiologist, and ENT doctors. None of them offered any help with tinnitus. No medications, no psychiatric evaluation, nothing... just that my hearing is symmetrical, with normal thresholds, and only slight unilateral hearing loss in the high frequency. The ENT told me to just go home and try not to think about it. The best would be to forget about it he said. So I am learning to deal with this on my own now.

Likewise. I saw my personal doctor, then 3 ENTs, 2 Audiologists, a Stanford Tinnitus 'Expert' and another personal doctor.

The advise I got from my first doctor was, "you'll learn to live with it."

Audiologist #1 said my hearing was within in normal range and that she felt it was just allergies and she gave me 90% odds that it would go away within a few months. It's been 14 months.

ENT#1 said that he had Tinnitus too from working in the ranch as a young kid. He said, "I know it's nothing bad, I know there's nothing I can do about it so I don't worry about it, learn to live with it." - and he just sent me home.

ENT #2 said, "You have very minor hearing loss, very little, that's what's causing it, control your anxiety" and he just left!

Audiologist #2 at Stanford said that my hearing was within normal range and she too thought it would go away, unless I had inner ear damage, which she couldn't tell if I did.

ENT#3 at Stanford said, "I have it too, when it bothers you, go on long walks" - and that was it

The Stanford "Expert" told me they were barely starting their Tinnitus program at Stanford and I was invited to participate in their research. I told him I had read that William Shatner had Tinnitus and he overcame it with CBT and noise generators/TRT and if he could recommend me someone for CBT and that I was interested in Tinnitus Retraining Therapy. He said that their research indicates TRT is just the introduction to sound and that I could do that myself using headphones. He said to listen to music I like, general sounds or music I don't really care for but to just have it in the background - and sent me home.

I tried to look for a therapist to help with CBT but she did't know anything about Tinnitus. She did say she had a patient that was in a car accident and developed Tinnitus due to it and that he had lost his eye sight in one eye and was losing sight on the other eye. So he has T and will be completely blind soon!

 

[Rasmus]

Likewise. I saw my personal doctor, then 3 ENTs, 2 Audiologists, a Stanford Tinnitus 'Expert' and another personal doctor.

The advise I got from my first doctor was, "you'll learn to live with it."

Audiologist #1 said my hearing was within in normal range and that she felt it was just allergies and she gave me 90% odds that it would go away within a few months. It's been 14 months.

ENT#1 said that he had Tinnitus too from working in the ranch as a young kid. He said, "I know it's nothing bad, I know there's nothing I can do about it so I don't worry about it, learn to live with it." - and he just sent me home.

ENT #2 said, "You have very minor hearing loss, very little, that's what's causing it, control your anxiety" and he just left!

Audiologist #2 at Stanford said that my hearing was within normal range and she too thought it would go away, unless I had inner ear damage, which she couldn't tell if I did.

ENT#3 at Stanford said, "I have it too, when it bothers you, go on long walks" - and that was it

The Stanford "Expert" told me they were barely starting their Tinnitus program at Stanford and I was invited to participate in their research. I told him I had read that William Shatner had Tinnitus and he overcame it with CBT and noise generators/TRT and if he could recommend me someone for CBT and that I was interested in Tinnitus Retraining Therapy. He said that their research indicates TRT is just the introduction to sound and that I could do that myself using headphones. He said to listen to music I like, general sounds or music I don't really care for but to just have it in the background - and sent me home.

I tried to look for a therapist to help with CBT but she did't know anything about Tinnitus. She did say she had a patient that was in a car accident and developed Tinnitus due to it and that he had lost his eye sight in one eye and was losing sight on the other eye. So he has T and will be completely blind soon!

That last person, i fell so bad for him ((( i wish i could help a guy like that!

 

[Samir]

Likewise. I saw my personal doctor, then 3 ENTs, 2 Audiologists, a Stanford Tinnitus 'Expert' and another personal doctor.

Seems like you have taken a few steps further than me, and even seen some "experts" in the field.

Did he ask you if it was bilateral? It might be hereditary you know!



What does "barely starting" mean? Why did you not participate in the research? I wish someone showed interest in using me as a study subject. I would gladly participate. The only tinnitus study we have in Sweden right now is the hereditary and heterogeneity study. But I'm not sure what else they could do... Maybe they could focus more on physiological factors like hearing loss, ear and brain injuries/changes. If everyone keeps talking like this is the most common cause of tinnitus, then we need to rule that out or confirm it. That would mean one cause of tinnitus sorted out. Then we can look at other causes.

 

[Niklas]

@Samir did you read the interview with Canlon and Cederroth in the Swedish newspaper today?

 

[EddieMar]

Seems like you have taken a few steps further than me, and even seen some "experts" in the field.

Did he ask you if it was bilateral? It might be hereditary you know!



What does "barely starting" mean? Why did you not participate in the research? I wish someone showed interest in using me as a study subject. I would gladly participate. The only tinnitus study we have in Sweden right now is the hereditary and heterogeneity study. But I'm not sure what else they could do... Maybe they could focus more on physiological factors like hearing loss, ear and brain injuries/changes. If everyone keeps talking like this is the most common cause of tinnitus, then we need to rule that out or confirm it. That would mean one cause of tinnitus sorted out. Then we can look at other causes.

Well, the actual diagnosis was bilateral tinnitus but because I told him that it started just on my left ear and then about two months later I started feeling it on my right, but my right ear Tinnitus only lasted about two weeks and it was a lot lower than my left ear.

My dad has bilateral tinnitus but his is so low it doesn't bother him and his can be attributed to probably all the medication he's taking for cholesterol and blood pressure. His started about 5 years ago.

By "barely starting," - he meant Stanford was working on putting a program together where counselors would see patients and guide them and help them deal with their Tinnitus, like CBT I guess. They were also trying to put together a support group that would meet monthly or at least a few times a year. I'm on the list and I'm supposed to get a call once they get enough people and it's implemented.

The Stanford ENT I saw said he sees 8-10 Tinnitus patients a day so I don't know how they don't have enough patients yet. I do see that everyone I talked to about my Tinnitus at Stanford, they're all on a different note. The Stanford Audiologist said my hearing was normal, no hearing loss and that my T would eventually go away. The Stanford ENT said the I had minor hearing loss, mostly on my right ear and very little ear damage on my left. The Stanford Tinnitus expert said audiology reports to him mean nothing. He doesn't care what they show, if I have T, I have T, no matter the reason and all I should focus on is dealing with it.

(A different ENT told me that Audiology reports to him also aren't the tell all, because everyone has different hearing thresholds. What's normal for one person can be severe hearing loss for another person, idk.)

They have been researching Tinnitus for awhile at Stanford he said. A project he mentioned they were working on was a helmet that could somehow detect your Tinnitus tone and cancel it out. He mentioned a couple of other projects but I can't think of them right now.

 

[Samir]

@Niklas No. What paper is that?

Did he disclose anything new? Like what he means by "environmental factors"? I am still waiting to be able to read the publication. I can't believe that Nature or DOI is to blame for this. Everyone else seems to be able to publish just fine.

 

[EddieMar]

@Samir did you read the interview with Canlon and Cederroth in the Swedish newspaper today?

Hi, I'm sorry, I'm new here so maybe you already answered this question. Can you explain how and why you think stress caused your Tinnitus?