Data Collecting from This Site

This would be a lot of work, I know, but it would be great if somehow data from people on this site was collected, such as what are people's causes of T, if they still have it, how they got rid of it, if they got rid of it or habituated, if the drugs work or not... it really is a jumbled-up mess in this forum, and to have it narrowed down in an organized manner would be great.

 

using a support forum for tinnitus as a proxy for the greater distribution of people with tinnitus as a whole is probably a bad idea. people are here because they are (1) new to tinnitus and have not habituated or (2) are part of a very small group of long time sufferers. Most people move on to habituate over a 1-2 year period, and are almost for certain poorly represented (or most likely not represented at all) on this site. Seeing that a small percentage of people on the site consider themselves habituated would only stand to scare you as someone new to T. It is also not a true representation of reality.

 

I think you mean well but Eric is right in how the data wouldn't be accurate. I do think it is a good idea though to find ways to get the medical community to take tinnitus and hearing problems more seriously. It's truly sad that I know more about tinnitus than either my primary doctor or my ENT.

 

Well, in that, we both agree.. I'm very much in favor of more funding to help people suffering from tinnitus. I'm opposed to newbies coming here and scaring the hell out of themselves here. My hopes are to help alleviate the fears of people new to tinnitus. far too many people leave this site once they begin to feel better, leaving too much negativity here. it shouldn't be that way. it doesn't have to be if we stick around once we've begun feeling better and continue to help. good luck,

eric

 

The only way to eliminate the fear is to find a cure. Just waiting for it to go away or habituating is not my plan.

 

Well, I hope that you change your feelings on that. Being close minded toward habituation is unfortunately one of the best ways to hinder it. Spending one minute more than necessary suffering, waiting for an elusive cure, was never in my plans. I wish you the best of luck in your recovery and hope that you can at least try and keep an open mind toward habituation. I can understand why that's hard. I was once where you are now. As a mathematician/statistician, I tried my best to avoid the anecdotes of support sites and to seek out the data of why so many people (maybe 50MM in the US alone) have tinnitus, but why so few seem to suffer from it in the long term. Hopefully you're wiling to consider the same as at least possible. In the meantime, I found members like @iwholovemusic and @glynis to be wonderful and thoughtful resources who offered me real help and kept my thinking grounded. Just reading their psots and seeing their experiences helped me a great deal early on.

good luck,

eric

 

I think they need to develop a better method of calming the Limbic system and/or the amygdala other than anxiety medication when it comes to tinnitus. Clearly the onset of tinnitus (and hearing issues) causes many, many people to become extremely anxious and depressed. There's definitely a link between the tinnitus and the mental response to it. Sadly, people like my primary care physician think I just need to "worry less". That's why I think the medical community needs to be educated further about this tinnitus and all of its attending issues.

 

This has already been done - in no small part because of myself...

• https://www.tinnitustalk.com/threads/survey-results-rate-your-tinnitus.9803
  
• https://www.tinnitustalk.com/threads/survey-results-tinnitus-talk-satisfaction-survey.7890
• https://www.tinnitustalk.com/threads/survey-results-tinnitus-talk-mini-survey.7904

 

Well tomorrow I will be Giving a talk to a group of year 2 trainee doctors and next week one to Hearing therapists and their clients and will be talking about all aspects of tinnitus and Menieres and the BTA and forum and Tinnitus Talk forum so hope I will help put across the need for help and support especially early onset and all the unwanted emotions tinnitus can bring....lots of love glynis

 

The work made on this forum is incredible. The team is awesome, thanks for all the great things you do for the community. We have the chance to have you and that's a great opportunities for the new sufferers.

 

Wonderful, @glynis. Thanks to you, @attheedgeofscience, and the many others who work to bring awareness, promote research, etc. Different people are doing different things, but its all helpful.

 

Thanks for these.

 

Just to add....

@eric peterson is correct in that we are a skewed group, the thin end of the wedge you might say that represent the small percentage of people who have tinnitus as a real problem. It's a shame that we don't get people hanging around as much as we would like or sharing their successes more often. I guess that this is just human nature, overcome something and then put it behind you.

I believe there is still a lot of useful data to be had though and still an awful lot we can do to help ourselves and the research community and try to deepen the understanding of tinnitus. This site is not just the 10k+ members, we have between 150k and 180k unique visitors every month. Many of them may be coping fine and happened to find us after a curious search for a particular treatment or an article that made them wonder on something; until we ask we don't know.

We are going to try and tap into this starting now. We're launching a new survey within the week that looks at sub types of tinnitus (where we can identify them) and various other things, to look for patterns and try to understand what has helped people. The surveys that @attheedgeofscience has linked to above have been analysed and given us an excellent base to continue. We're linking it to Tinnitus Awareness Week in the UK in the hope it maximises the response rate.

I'm going to the TRI conference in March, we're going to have a table in the exhibition there where we hope that we can really build a bridge to the research community. If we can encourage as many TT visitors as possible to contribute I think we can get some incredible data to present there to show the value of understanding the patient.

 

Why do the admin reserved certain parts of TT for the members ? That will force the visitors to sign up to have all the contains...

 

Which bits? For a survey the link will be for everyone.

 

I mean, TT can be open like a teaser with few threads for visitors, and if they want to discover all the tremendous & interesting stuff, they have to sign & participate.

A survey must be enlarged at the maximum of persons I understand ;-)

 

Good luck opening threads for posting for guests, the amount of automated spam by Chinese bots would be a lot

 

@Steve,
Great your linking up to Tinnitus Awareness week with the BTA.
Doing two talks and a collection day in Feb and first one is tomorrow Wednesday.
Will talk about TT also....lots of love glynis

 

I understand that you don't want to accept the fact that it might not go away, and that by accepting the T, you've lost. But there is NO CURE. We all think that sucks real hard and that there should be one. But the fact is that there is none unless you have TMJ or maybe ear-infected related T.
For your own happiness and well-being, you need to accept the T. The sooner you do, the faster you'll stop hearing it. Then you'll forget about it. It will stop making you feel like shit. I know how you feel, I'm just 3 months in. But by letting it go, I've become much happier and back to the person I used to be before.

The surveys, as already said by many, cannot be representative for a larger population, since it only shows the result from the members here. Keep that in mind.

 

That's not possible with loud tinnitus. You have mild.

 

Since I've seen countless of people here with loud T, I believe it is possible. Also, T is subjective. Someone with mild T can feel it being very intrusive, but for someone else that has loud T but has been habituated wouldn't maybe not even "hear" it. So you cannot dismiss it because "you have it mild". We all have T here.

 

If people want to go around and be miserable, then they are allowed to do that. I try to help out, since people are asking for advice. Acceptance is unfortunately the only "cure". Ask anyone that has habituated. I won't force anything on anyone, but if you don't want to follow the advice you get, then don't be upset and wonder why still feel shit a month, a year or 5 from now.

 

I actually agree with @Hotaru ! Yes as some of you say, the data here is coming from the most extreme cases (like me). But it's also those extreme cases that needs help. And we sit on so much valuable information and knowledge that not even the best doctors here in Sweden knows about. I think the data collecting should be in a rational and objective order. To ignore everything that is on this forum is a big big waste IMHO.

 

@Fangen i agree with what your saying. Acceptance being the best way to deal with tinnitus. But it is a lot easier said than done. I am in a constant battle with my mind. Part of me saying it will get better, it just takes time, don't worry. Another part saying your life will never be the same, panic. I just wish there was more help in the medical world.

 

I know very well how it feels like, I can bet for a fact that we all have gone through the same process. So no one here has not just felt better without hitting the lowest point with anxiety, fear and hopelessness. But I don't like being dismissed on the basis of "your T is mild, therefor your opinion doesn't hold that much value". I had to feel like shit for weeks before feeling better. All the veterans keeps telling the newbies to stop feeling bad and accept it, that is the truly the only way to get better. I know it is hard but by refusing to do so, will only prolong the suffering.

 

I agree with you there. My tinnitus would probably described as mild to moderate at times. Im still only a month in so my head is all over place. But either mild or severe everyone will react different due to people's brain perceiving the sounds in different ways. I think either mild or severe we can all eventually habitute but just takes some longer than others due to their mindset.

 

Reading this I have to agree with a lot of comments but as far as accepting T is concerned absolutely not,I accepted T then got worse then accepted my new T and got my life together just to be smacked back down again with T and H.After getting through this and getting a life together once again it just seems to be worsening as time goes on,I'm beyond accepting at this point and want one thing and one thing only,a cure!!I do believe though that a lot of information here would be useful for research as its really a selection box of all forms of T that might be of use,who knows.

 

What will do you until the cure?

Also worth noting, I had a spike too in the middle of my first habituation. But I still believe accepting is the only way to feel better until (hopefully) there will be a cure.

 

Agreed Mine has also changed over the 3 months I've had it too.

 

Drawing from a skewed distribution to see how to help that exact skewed distribution is a valid idea and can help those most at need. Drawing from that skewed distribution and making inferences on how the entire population reacts to their tinnitus would be the equivalent of going to a Los Angeles Lakers' practice and using only those players to decide the height of the average American male. It serves only to misinform. That was my only point. For those trying to understand what is the most likely outcome for themselves and their tinnitus, using only the people on this site serves only to scare and mislead.


Eric