Survey Results: Rate Your Tinnitus

[Tinnitus Talk]

Our Rate Your Tinnitus survey ran from March 31th until May 8th.

In total we received 1756 responses.

The survey was open to all visitors of Tinnitus Talk and it was promoted on social media (Facebook and Twitter) as well.

We have shared the survey data with the Tinnitus Research Initiative.

Tinnitus Talk would like to thank @attheedgeofscience who did the analysis.

The PowerPoint presentation (the views and pie charts are easier to read from the PowerPoint) of the results is attached to this post and can be found at the bottom.

Below are the images from the presentation. Click on each for a larger version.

 

[Sailboardman]

Great job! I wish we were all in category 1, on these charts!

 

[Asian]

Thanks for posting . the statistics dont look impressive though
I hope and pray autifony becomes a game changer

 

[robinbird]

Thank you for this visual. Graphs are always a great way of making a statement. I think it would be interesting to do a survey and then graph it to show what people think brought on their tinnitus.

 

[Zaid]

Thank you,

I have been going through the charts, those statistics doesn't help the newbies like me at all (5 weeks). It denies most of the success stories that made me stronger

I believe it's because most of the chronic T sufferers (>1 or 3 years) whom participated are actually the ones who didn't get over it and that's why they are here on this forum until now.

I am sorry for my words but I hope it is logical what I am saying here. Apologies again.

Bless you all, I believe I shall start getting along with my life and stop googling and surfing :'(

Crossing fingers for Autifony

 

[Nucleo]

Thanks for posting . the statistics dont look impressive though
I hope and pray autifony becomes a game changer

You have to realize this survey doesn't represent the entirety of the tinnitus community. Almost everyone here has it bad to some degree. I didn't join this site until it got bad enough and I'm sure many others have as well.

 

[attheedgeofscience]

I think it would be interesting to do a survey and then graph it to show what people think brought on their tinnitus.

As it happens, that was done a little while back (perhaps before you joined the board). See this thread:

www.tinnitustalk.com/threads/survey-results-tinnitus-talk-mini-survey.7904

The specific slide relating to the etiology of tinnitus can seen here with a break-down (click on image to enlarge it):

 

[Michael2013]

I'm not sure what conclusions we can really draw from these charts. In the first one for example, it shows the ability to mask based on the onset time. At first glance, it looks like the longer you have tinnitus, the worse and less maskable it becomes. Is that really true, or is it possible that tinnitus has gone away in many people and/or those people with tinnitus onset have moved on and simply aren't here to respond?

-Mike

 

[Markku]

is it possible that tinnitus has gone away in many people and/or those people with tinnitus onset have moved on and simply aren't here to respond?

Yes. Good point. We did contact members of ours who hadn't visited in a long time via e-mail though and asked them to complete the survey.

Anyway, it's good to be aware of the possibility that the results could very well be different if a bunch of people with chronic tinnitus were surveyed from outside of the tinnitus community (e.g., send 20K letters to random households, first question being something like "do you have constant ringing in the ears?" - if yes, continue to the rest of the questions and send your answers back to us - if no, thanks for your time).

 

[attheedgeofscience]

I'm not sure what conclusions we can really draw from these charts. In the first one for example, it shows the ability to mask based on the onset time. At first glance, it looks like the longer you have tinnitus, the worse and less maskable it becomes. Is that really true, or is it possible that tinnitus has gone away in many people and/or those people with tinnitus onset have moved on and simply aren't here to respond?

The survey questions were formulated by the Tinnitus Research Initiative and we ran the survey on the TinnitusTalk platform (for them). They will use the data for their own purposes. But since we had already collected the data, we decided to share a couple of data profiles that we thought might be relevant (by doing break-down of data categories and comparing them). However, TRI may well approach the analysis from a different angle. Indeed, there were several other views that could have been chosen, but we choose eight, and that is what you see here today.

attheedgeofscience
02/JUN/2015.

 

[Michael2013]

I have been going through the charts, those statistics doesn't help the newbies like me at all (5 weeks). It denies most of the success stories that made me stronger

I believe it's because most of the chronic T sufferers (>1 or 3 years) whom participated are actually the ones who didn't get over it and that's why they are here on this forum until now.

I don't think these charts need to cause you any worry at all and I don't think it's predictive of what your tinnitus will become.

I don't know enough about the results to say for sure, but I believe it is likely skewed toward having respondents that were currently still suffering from tinnitus. Those who no longer became bothered by it have eventually moved on with their lives and tinnitus doesn't consume them every day like it does for many of those who did respond.

-Mike

 

[Michael2013]

The survey questions were formulated by the Tinnitus Research Initiative and we ran the survey on the TinnitusTalk platform (for them). They will use the data for their own purposes. But since we had already collected the data, we decided to share a couple of data profiles that we thought might be relevant (by doing break-down of data categories and comparing them). However, TRI may well approach the analysis from a different angle. Indeed, there were several other views that could have been chosen, but we choose eight, and that is what you see here today.

attheedgeofscience
02/JUN/2015.

What you guys have here isn't necessarily a bad thing. It will be interesting to see what TRI chooses to do with it I guess.

It almost seems like we need identify a statistically relevant number of people in the <6months onset category and follow up with them every 6 months for a few years and see how it changes over time.

-Mike

 

[robinbird]

As it happens, that was done a little while back (perhaps before you joined the board). See this thread:

www.tinnitustalk.com/threads/survey-results-tinnitus-talk-mini-survey.7904

The specific slide relating to the etiology of tinnitus can seen here with a break-down (click on image to enlarge it):

View attachment 6853

OK Thanks. It is interesting. How about another idea? "How many of us have been dismissed by the health professionals when we come to them for help."

 

[Markku]

OK Thanks. It is interesting. How about another idea? "How many of us have been dismissed by the health professionals when we come to them for help."

From our previous Global Tinnitus Survey, a question in the same vein:

 

[patwalsh]

OK Thanks. It is interesting. How about another idea? "How many of us have been dismissed by the health professionals when we come to them for help."

That's a very good point Robin. I know I have been dismissed by so called professionals. Wonder if that's the case in every country or just in the UK and US

 

[robinbird]

That's a very good point Robin. I know I have been dismissed by so called professionals. Wonder if that's the case in every country or just in the UK and US

Nope, I think it is globally. I have often wondered why. Is it because T is too close to the brain, is the profit margin too low, is it easy for us to live with compared to cancer, are they just too lazy, are they afraid of being sued? What the hell is it, when this Tinnitus is such a hellish experience for any human to have to let alone go through for a short period of time, why are we dismissed and shown the door and told to have a nice life. These professionals need to wear a recording of Tinnitus for a month, keeping the ear buds in and give them a crack at what we are dealing with. Would they like to live with this? Would they feel happy that they have achieved habituation?

sucks

 

[patwalsh]

Nope, I think it is globally. I have often wondered why. Is it because T is too close to the brain, is the profit margin too low, is it easy for us to live with compared to cancer, are they just too lazy, are they afraid of being sued? What the hell is it, when this Tinnitus is such a hellish experience for any human to have to let alone go through for a short period of time, why are we dismissed and shown the door and told to have a nice life. These professionals need to wear a recording of Tinnitus for a month, keeping the ear buds in and give them a crack at what we are dealing with. Would they like to live with this? Would they feel happy that they have achieved habituation?

Yea there reactions are very strange. I know here in the UK GPs (doctors) are very reluctant to refer you to the hospital. I had to make 3 visits to them before they grudgingly gave in. The ENT consultant I saw today was less than helpful, he couldn't wait to get me out of his office, he only looked in my ears after I asked him too and then that was for less than 10 seconds.

 

[robinbird]

Yea there reactions are very strange. I know here in the UK GPs (doctors) are very reluctant to refer you to the hospital. I had to make 3 visits to them before they grudgingly gave in. The ENT consultant I saw today was less than helpful, he couldn't wait to get me out of his office, he only looked in my ears after I asked him too and then that was for less than 10 seconds.

Is there a "gag order" in place? I have received 0 help from my PCP, ENT who ordered me a CT scan, audiologist, nurse etc. I have a copy of the CT scan I am thinking about looking at it in my computer. Could be interesting to see myself in a different mode. I am seeing another ENT, next in August. Have you noticed a pattern with all of these folks. They anticipate what you're going to say and cut you off at the quick. It makes it hard to try and communicate with them what the problem is. They are just reluctant to help because they're incompetent. I think my anger is affecting me more now than the tinnitus over the medical community. I am seeing a holistic massage and nutritional therapist next week. Can't hurt!

 

[patwalsh]

Is there a "gag order" in place? I have received 0 help from my PCP, ENT who ordered me a CT scan, audiologist, nurse etc. I have a copy of the CT scan I am thinking about looking at it in my computer. Could be interesting to see myself in a different mode. I am seeing another ENT, next in August. Have you noticed a pattern with all of these folks. They anticipate what you're going to say and cut you off at the quick. It makes it hard to try and communicate with them what the problem is. They are just reluctant to help because they're incompetent. I think my anger is affecting me more now than the tinnitus over the medical community. I am seeing a holistic massage and nutritional therapist next week. Can't hurt!

I totally agree, they show no compassion at all. The more questions I asked the more annoyed he got. I'm not expecting a miracle cure but the arrogance shown by some in medical profession is very frustrating. I asked today if he could refer me to someone who specialised in treating tinnitus. He got really angry with me and told me all ENT doctors are specialists!

 

[robinbird]

I totally agree, they show no compassion at all. The more questions I asked the more annoyed he got. I'm not expecting a miracle cure but the arrogance shown by some in medical profession is very frustrating. I asked today if he could refer me to someone who specialised in treating tinnitus. He got really angry with me and told me all ENT doctors are specialists!

Do you have any idea what may have caused your Tinnitus?

 

[patwalsh]

I'm not sure Robin. I had a hearing test today and they said my hearing is fine. It started in my right ear and stopped after a couple of days. 3 weeks later it started in my left ear and has been the same for 7 weeks now.
I've had sinus problems for years but the ENT Doctor said there's no connection

 

[JabbingJab]

I found the Quality of Life chart interesting. For those who had T under 6 months had a very choose category 1 but after 6 months, it seems to hover around 9% in category 1. I think it's our ability to adapt to the noise we have to live with.

Also the quality of life seems to be very similar across the duration of T.

 

[James Brown]

One of the factors that counts is:-How high the noise is inside your head or in your ear.
I lived with a level 3/4 in 10 for more than 12 years and I rarely though about it. Now I have a 8 and I am about 3 years trying to cope. So it all depends on a lot of factors.

 

[Geo]

I'm not sure what conclusions we can really draw from these charts. In the first one for example, it shows the ability to mask based on the onset time. At first glance, it looks like the longer you have tinnitus, the worse and less maskable it becomes. Is that really true, or is it possible that tinnitus has gone away in many people and/or those people with tinnitus onset have moved on and simply aren't here to respond?

-Mike

Yeah good point. I believe great percentage of us here on the site are really bad sufferers as in we needed much medical attention. I feel many have T but doesnt affect them daily or at all much.. My grandpa told me hes had a cricket noise in his head for 40 years. I had no idea.. It never onced spiked on him ever since and hes into guns.. Some of us have it bad and some go on without problems

 

[Geo]

One of the factors that counts is:-How high the noise is inside your head or in your ear.
I lived with a level 3/4 in 10 for more than 12 years and I rarely though about it. Now I have a 8 and I am about 3 years trying to cope. So it all depends on a lot of factors.

Its all about volume of the noise.. Mild t is liveable and tolerable. Severe and up thats a new ball park and very hard to cope especially if you have H with it.. We should do a study on how it affects our work.. Some of us have it really awaful and yet cant even qualify for disability insurance their responce its only tinnitus like its nothing..

 

[James Brown]

Its all about volume of the noise.. Mild t is liveable and tolerable. Severe and up thats a new ball park and very hard to cope especially if you have H with it.. We should do a study on how it affects our work.. Some of us have it really awaful and yet cant even qualify for disability insurance their responce its only tinnitus like its nothing..

If you have a low hiss it's a minor problem. After some time, you get used to it. Like I said here a lot of times its like wearing glasses. You have it on your nose, but you don't think about it. If you have, like I have today a loud hiss, hundreds of crickets and sometimes a hum, it's hard to ignore it, when it subsides above all and are increased by the sound of cars.. Etc.

 

[Markku]

We should do a study on how it affects our work.. Some of us have it really awaful and yet cant even qualify for disability insurance their responce its only tinnitus like its nothing..

The above from our Global Tinnitus Survey. We received 900 responses.

Now the "Unable to work" answer option should probably have been "unable to work because of tinnitus", as now it also includes other reasons. Of course in the "Retired" group there could also be people who would be unable to work but are retired so they chose that....

But still, you can get a rough idea about the percentage.

 

[Geo]

If you have a low hiss it's a minor problem. After some time, you get used to it. Like I said here a lot of times its like wearing glasses. You have it on your nose, but you don't think about it. If you have, like I have today a loud hiss, hundreds of crickets and sometimes a hum, it's hard to ignore it, when it subsides above all and are increased by the sound of cars.. Etc.

I have very severe T and H.. I cant walk out of my house wothout it reacting and pain awaiting to come in.. Its hell even in my house say i drop something on the floor its hell for my ears.. I worked throught 2 years with T and it wasnt pleasant to the point i damaged myself too much was around loud noises and michenary..

 

[James Brown]

I have very severe T and H.. I cant walk out of my house wothout it reacting and pain awaiting to come in.. Its hell even in my house say i drop something on the floor its hell for my ears.. I worked throught 2 years with T and it wasnt pleasant to the point i damaged myself too much was around loud noises and michenary..

I work at a brewery and my T and H are not so bad as your seams to be. I work at the laboratory, so I'm not exposed to high noises, but sometimes I had to go to the production plant and I had a talk with my boss and she understand I wasn't able anymore to do such task, so other people do it and I just stay at the lab . If I had to do a task at a place where there's a lot of noise I probably would have to retire.
Thank God I work in a place where people are sensitive to others problems.
My H is bad some days and when it's bad I have to avoid crowded places and noisy places. When in good days I just have to avoid loud noises like drilling and that kind of sound.

 

[Brianna]

They are just reluctant to help because they're incompetent.

Not all physicians are incompetent and I've had my share of those that are. There are various factors that come into play:
1. Tinnitus occurs in the head as in brain. Areas where some buzzing occurs in specific situations have been identified. I may begin with cilia dying off in the cochlea but my guess is there are a number of other places that can
cause it (we pretty much all conclude stress is one of those causes but where does this even start - where in the brain and what causes it to peak).
1a. The problem is so many things can cause it physicians would be walking into Pandora's Box to isolate the source and that's hellishly expensive. So I'm separating physicians from those doing research here.
2. How much reimbursement will a physician get for treating an ailment that's not isolated. Does that physician
take pot shots and idly say he/she can correct the issue? I've never heard anyone say that. Pot shots aren't going to be reimbursed... unless they're well phrased.

I'm no doctor. Dealing with something as complicated as T is not something I'd want to deal with as a physician. That may also why Nagler was very specific and limited in terms of giving us a couple of names of people who know the subject better than most.