MemberYou can read the article in the Swedish Facebook group HRF: Tinnitus och ljudöverkänslighet.
Bilateral Tinnitus May Be Hereditary
- Thread starter Samir
- Start date
You can read the article in the Swedish Facebook group HRF: Tinnitus och ljudöverkänslighet.
I have had a lot of stress at work and in my private life. and my tinnitus didn't come after concert or something like that. My hearing test was fine.
Manager@Niklas Hörselskadades Riksförbund (Swedish national association for hearing impaired) is not exactly a newspaper. They do have a magazine called Auris. But again... not a newspaper. They have not covered this latest research result in Auris yet. I did check with Aftonbladet and Expressen. Aftonbladet had an article on this but asked me to pay for Plus membership to read it. Expressen had almost nothing on tinnitus, some of their articles on tinnitus are several years old.
@CederrothCr Where is your publication? I am now starting to think that it's not published yet or is not accepted yet. I just checked with DiVa. I found only 2 of your publications there. I checked with SwePub and the latest I found there is from the last year. I also tried searching KI's database but turned up empty.
Could it be that the DOI URL is wrong? Could it be that you are missing two digits in place of XX in "GIM.2017.4XX"?
Could it be that the DOI URL is wrong? Could it be that you are missing two digits in place of XX in "GIM.2017.4XX"?
@Niklas are you talking about the interview in Aftonbladet? have you been able to read it? I haven't been able to check if there hasn't been any exaggerations. Would love to get a copy.
@Samir - Nature journals had problems with the early release of some articles. You can now find it here:
http://rdcu.be/qkr1
Let me know if this works - will try to answer all your questions above as well when time permits
@CederrothCr Thank you! It looks like the original link now works as well. Article received 17 August 2016, accepted 9 January 2017, published on 23 March 2017.
I actually contacted Nature about this. This is the response I received from Andrea Giannini, Publishing Assistant:
Who would have thought that the sea was to blame!
I will read the article now.
I actually contacted Nature about this. This is the response I received from Andrea Giannini, Publishing Assistant:
Who would have thought that the sea was to blame!
I will read the article now.
Of what population? The population of Sweden?
So that's roughly 15% of the twin population included in the study.
What percentage of the population in Sweden has tinnitus? How can we know this? I have tinnitus! But I was not diagnosed as having tinnitus. The ENT doctor I met with, chief physician at the clinic, confirmed my own suspicion that I have tinnitus. But he never set the diagnosis in print, in my medical records. Why do medical doctors in Sweden almost never use ICD codes? Not even the so called specialists doctors?
Isn't that important for statistics and medical research? I know we have ICD codes in Sweden. Specifically, we have our own version of the international ICD-10 codes called ICD-10-SE. Out of maybe 20 of my doctor visits, GP or specialists, I have seen ICD codes used in maybe 2 cases.
Maybe I am the crazy person here, thinking that systematic and hard diagnosis of diseases with proper ICD coding may help researchers identify, quantify and analyze disease in population using medical records. But think about it! If it wasn't for systematic recordings of newborn twins in Sweden, this tinnitus cohort study, and many more like it, would not have been possible.
@CederrothCr Doesn't the last sentence contradict the first one? On one hand, you're saying that if both twins in a pair report having tinnitus regardless of laterality then they are concordant. On the other hand, if one of the twins in a pair reports having bilateral tinnitus and the other twin in the same pair reports having unilateral tinnitus then they are discordant. You're not disregarding laterality then, are you? After all, the whole study is based on laterality. So side does matter.
The word you may be looking for is epsilateral! If both twins in a pair reported epsilateral tinnitus, then they were considered concordant?
@CederrothCr
Previous reports: http://www.sciencedirect.com/science/article/pii/S0378595516300272
From the referenced article:
I'm guessing that 515 patients across 16 countries is a large sample for tinnitus studies?
I can't believe the kind of pain you guys have to go through just to collect some statistical data. Different databases, different countries, different definitions for what tinnitus is, manual searching, manual duplicate removal, manual data extraction... I have no words! Except bravo! I think of myself as persistent with attention to detail. But I am not sure I would be able to keep up with that and not give up.
I guess the only thing that has changed for researchers since the early 20th century is that research papers are more easily accessible thanks to computers, the Internet and the Web. The collection, extraction and analysis of research publications is still a painstaking manual process. I understand that the job of a researcher is not easy, but all these hurdles and obstacles are unnecessary and something we can do without. They hinder research and progress.
What you need to be looking for is not a cure for tinnitus. You need to be looking for a common definition, common standard, common database for recording cases of tinnitus. Not just tinnitus, but other health problems as well. At very least, we should have a common pan-European framework and database for health data aggregation that you can tap into with ease for statistical analysis.
Big data in health care! Let it happen!
No wonder everyone loves the Swedish Twin Registry! It's a standardized, coherent, systematic access to a large data set that researchers can delve into with ease.
Previous reports: http://www.sciencedirect.com/science/article/pii/S0378595516300272
From the referenced article:
I'm guessing that 515 patients across 16 countries is a large sample for tinnitus studies?
I can't believe the kind of pain you guys have to go through just to collect some statistical data. Different databases, different countries, different definitions for what tinnitus is, manual searching, manual duplicate removal, manual data extraction... I have no words! Except bravo! I think of myself as persistent with attention to detail. But I am not sure I would be able to keep up with that and not give up.
I guess the only thing that has changed for researchers since the early 20th century is that research papers are more easily accessible thanks to computers, the Internet and the Web. The collection, extraction and analysis of research publications is still a painstaking manual process. I understand that the job of a researcher is not easy, but all these hurdles and obstacles are unnecessary and something we can do without. They hinder research and progress.
What you need to be looking for is not a cure for tinnitus. You need to be looking for a common definition, common standard, common database for recording cases of tinnitus. Not just tinnitus, but other health problems as well. At very least, we should have a common pan-European framework and database for health data aggregation that you can tap into with ease for statistical analysis.
Big data in health care! Let it happen!
No wonder everyone loves the Swedish Twin Registry! It's a standardized, coherent, systematic access to a large data set that researchers can delve into with ease.
You seem to misunderstand the paper you are quoting. It isn't 515 patients. It's 515 papers. They also didn't gather information on patients, they used statistics reported in the papers they included in the analysis.
FWIW, Christopher R. Cederroth isn't an author of the paper you are quoting.
Not all individuals age at the same rate. For the younger generations, I would say that their ears age much faster than the ears of their parents or grandparents. You don't have to be very old for your hearing loss to dilute the genetic contribution. Ideally, you would want to exclude hearing loss in this study.
How do you explain tinnitus that starts out as unilateral and then fluctuates to become contralateral, and then bilateral? In some cases, tinnitus may have genetic predisposition. I won't say it doesn't. But this study would have been much more interesting if you were able to rule out hearing loss.
It would not have been difficult if you had done hearing assessment of the subjects.
Interesting! That's what I said earlier. So we have no way of knowing for sure how many people have tinnitus in Sweden? What are the best estimates?
I keep saying, data, data, data! But data is lacking on so many levels. Patients are connected to researchers through data collection. I have no problem sharing my medical records with researchers. But the problem is that we don't collect data in a systematic way, so there is not much to share.
We don't even set ICD codes and hard, written diagnoses. Most doctor visits in Sweden start and end with verbal conversations. Very little is written in medical records. I have received the "Z000-Allmän medicinsk undersökning-Huvuddiagnos" as the main diagnosis. Medical examination as main diagnosis? How? What?!
I thought diagnosing was about identifying a problem, not identifying diagnosis itself as the problem. It's weird for sure. For tinnitus, they can use H93.1 instead of Z00.0 which basically says "yeah, we examined the patient".Then there is the problem of patient data protection laws, etc. We want to be leading the e-health and health care informatics in Sweden. We even have a dedicated e-health government agency. But we are at a standstill. Doctors can't easily share patient data between different hospitals. We are still stuck in the 1990s.
But why do we keep up with this? You know that clinical audiometers can go at least up to 16 kHz. Why not put that to use? Who decided that audiometric testing should go as high as 16 kHz? Audiologists or ENT doctors?
I take it the STOP study will include frequency tests above 8 kHz?
Questioned yes, and rightfully so! Especially when considering hidden hearing loss.
Does that mean that there are individuals who will never develop tinnitus thanks to their genetic makeup, regardless of how loud noise you expose them to? They just loose some hearing, but they don't develop tinnitus?
Yes, thank you! I misread that. I didn't read the article in detail to be honest. There are a whole lot more patients. But that makes the task even more difficult.
It says some of the data had to be excluded because some authors did not respond on e-mail to help the researchers breakdown the data collected in previous studies. I can't believe that it would come down to e-mail and possibly spam filtration on the recipient side.
I admire their dedication!
Yes, the referenced article is not by Cederroth. I kind of hinted on that by saying that it's a referenced article.
The number of patients in the original studies is irrelevant to the amount of work in a systematic review.
The authors of the paper did not collect the data, and the folks behind the twins registry are unlikely to administer hearing tests.
I must have missed the reference: what is the STOP study?
@CederrothCr
Yes, Aftonbladet. some one quoted it on FB, so I don't have a copy of the article. but I can post the quote to you in a private message.
I don't know really, it could be some help for you who suffer of Tinnitus. I see this notion of blaming and irritation when people think others or even themselves caused their tinnitus.
I guess you could start blaming your parents instead..
Well there is a study who says genetics is partly the reason.
In my case it is kinda of depressing because my mom has somewhat of a high tinnitus and I myself just have it from time to time due to my worthless sinuses.
But let us not making this to a pity competition.
https://www.sciencedaily.com/releases/2017/03/170309120434.htm
I guess you could start blaming your parents instead..
Well there is a study who says genetics is partly the reason.
In my case it is kinda of depressing because my mom has somewhat of a high tinnitus and I myself just have it from time to time due to my worthless sinuses.
But let us not making this to a pity competition.
https://www.sciencedaily.com/releases/2017/03/170309120434.htm
Sorry, barely saw this. They didn't mention a timeline on curing T.
I saw another ENT from Sutter Gould, super old man, not sure why he's still working, it took him 5 minutes to sit down. Turns out he's one of the founding members of the American Tinnitus Association since before it was called that, or before it had a name, something like that. He said they are close to introducing a new drug approved by the FDA within 3-4 years but he had no information on it, or how it would work.
He said he sees a couple Tinnitus patients a week. An old war veteran came to see him for a reason other than Tinnitus. In talking, the veteran told him a grenade had exploded close to him causing his ears to ring and they just never stopped. He asked him, "do you have the ringing right now?" and the vet said, "hold on, give me a second," so he pauses for a bit, until he hears it and says, "yep, I still have it." - ---The ENT trying to tell me he had habituated to it and he no longer notices it. The goal he said is to treat it like elevator music.
I just saw an audiologist/counselor at UCSF Medical. They did another audiology test, this time they went up to frequency 20K, the others had only measured to 8k.
The results. My right ear was fine, within normal hearing range, I was able to hear up to 20K.
My left ear, which is my main problem ear, I had a bigger dip around the 3.5 and 4K area, but she said it was within normal range and would not consider it being worse than it was last year. She said she could test me that same day it could score better. Even though it's dipped, she said she would not consider it notched. It still bummed me out that it scored worse than last year. :/
On that same left ear, I was only able to hear up to 16k, I couldn't hear 18 or 20k frequencies.
She said that might help explain my Tinnitus but would still regard my audiogram as normal. There is hidden hearing loss that they cannot measure and that too can be the source of the Tinnitus.
She also said if my hairs are damaged, they can be damaged from the top or from the root. She said there was no way to measure that. Another ENT had mentioned this, he said if the damage was at the bottom, it can come to a point that the hair breaks off and in doing so, it can alleviate the ringing, if all damaged hairs die off I guess. He didn't specify.
She said, the UCSF counselor I saw today, for me, my main problem is my anxiety. If I can learn to control that, my Tinnitus would diminish or I would easily habituate to it. She recommend the obvious, Tinnitus Retraining Therapy using a sound generator and CBT. I tried a sound generator for the first time there and I really liked it. It's small, barely visible, fits good in the ear and it has holes so that external sounds can come in easily. They're $1,000 each and they recommend getting two, one for each ear because if we just use it for the bad ear, then the good ear gets stronger and they don't want that.
Other treatment she mentioned was Desyncra; CR Neuromodulation. They use a customized iPod device with custom designed earphones. The therapeutic tones are tailored the patients' exact tinnitus profile. Patients wear the devices 4-6 hours per day over a 36 week period. The tones are quiet yet audible, allowing patients to continue with everyday patient activities. Desyncra changes the patterns in neural tinnitus networks, showing reduced delta wave activity across neuronal networks. Patients report reduced loudness and reduced annoyance. As therapy progresses, the brain plasticity enables long term benefits beyond the therapy period. This technology was developed in Germany. The cost she said was $4,500.
She also advised trying www.mindfultinnitusrelief.com
They gave me a Tinnitus Home Packet, 48 pages, if anyone things it might help them, let me know and I can scan it and e-mail it. The quality isn't good as it seems they've made copies of copies of copies but if I scan it high quality, it should be fine.
The table of contents includes:
- Tinnitus consultation recap
- Anatomy and Physiology of the ear and hearing
- Perception and evaluation diagram
- Vicious-circle model of tinnitus
- Definitions of cognitive distortions
- Goals worksheet
- Emotion cost-benefits analysis
- Overcoming insomnia
- Sleep tips
- De-stressing-your way
- Tinnitus device directory
- Adverse herbal medicine reactions & Audiology practice
- Adverse drug reactions and Audiology practice
- References
I asked, what if they cut the auditory nerve to that ear, you know, in a worse case scenario. She said that would make it worse!
I asked her, now that I have Tinnitus, would it be easier to cause more damage to my hearing vs someone that doesn't. She said no, but that everybody has different hearing sensitivities but having Tinnitus does not mean you are more prone to damaging your hearing easier.
I told her about a trip I took from California to Washington last month, 13 hours by car. The Sound Meter on my phone registered between 79 and 90 decibels all trip, averaging 83 decibels. She said long car trips at around 85-90 decibels can cause hearing damage. Cellphone meters are not accurate, they can be off by 2-5 db each way, so she recommended to wear ear protection on long trips, 2 hours off, 2 hours on, etc.
I showed my musician ear plugs I bought, which measure at 32 db. She said in reality, they might just be around 16 db. She said most earplugs commercial bought, their db rating is exaggerated as they don't test them in real life scenarios. In real life situations, they're just good for half their rating.
Custom molded earplugs through them are $300. They start off at 10db and cut off at 25db, and that's true 25db rating - maybe $300 is for the lowest rated ear plugs. I had just seen a video of the main singer of Cold Play who mentioned he had custom molded earplugs.
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