Social Experiment

[Ed209]

I have an idea for an experiment if anyone is seriously interested in doing it. It would take hard work and possibly some financial input so it may be hard to get this off the ground, but here goes:

I believe that it is easy to become entrapped in a tinnitus bubble. You may find that your routine has become orientated around tinnitus. For example, maybe you wake up and come to the forum to get your daily dose of tinnitus news before you go about your day. You may think this is harmless, but what if some of you are actually just re-enforcing your own obsession. This could be a crucial difference between hanging onto and letting go of the hold tinnitus has on you.

I believe each time you read about it part of your perception is made aware of it (think of it as making the dominance it has over you, stronger). Before you know it, everything you think about is T related and you realise it has taken over your life.

I propose this:

• We get some volunteers who are considered quite regular readers/contributors who are currently having a hard time.

• The volunteers stop coming to the forum, completely, for 3 months (debatable time frame). This includes no further internet research or reading of any kind about tinnitus at all. Tinnitus effectively dies as a concern and all efforts are made to ignore the sound no matter how annoying to begin with.

• The volunteers start a well planned exercise routine that includes a mix of HIIT and cardio. A weight training regime can also be added but can be considered optional.

• The volunteers take up a new hobby to replace reading this forum. Maybe learn an instrument; learn to draw or paint. Become a chess master. Take up photography maybe? It can be anything as long as it's thought provoking and highly interesting to the volunteer.

• The volunteers curb their carbs and sugar intake and eat as healthy a diet as possible. This may include the use of vitamin supplements.

• The volunteers buy ear plugs, preferably molded ones with filters. They wear these anytime sound goes over 80db (monitor using SPLnFFT, it's the cheapest most accurate app). Anything above 100db is avoided completely. Anything above 90db and the use of plugs rated at 25db-30db must be used. Again preferably molded plugs as people often misuse foam ones.

• We set a date and the volunteers come back here and report how they feel. No diaries are kept of how loud their tinnitus is at all.

Something like this is unlikely to happen, but if we get some willing participants maybe we can give it a go? It's all about changing your current perception.

Sticking to the plan would be really hard, but only to begin with. I believe some of you would find it has a profound effect on your life.

 

[Fairy]

Hi, Do you think anyone wants to hang on? I don't think so. We want to dump tinnitus, earpain, and whatever it is. I have my for 6 months, I have tried everything. Now I am going to Chiropractor and maybe acpuncture, maybe tai chi exercise, or whatever. I am doing to do all three. I won't be around here more. Advil does not work any more me. I don't have pain killers like people on here. I was wandering why I cried everyday. It is our goal to get well. If you want research even on this web site, you have to move your butt to get well. Be Blessed without tinnitus. I will let you know how the chiropractors go. I am hiring two of them. I am getting well.

 

[Foncky]

You have to make a control group which stays focused on T and doesn't even go out

 

[Ed209]

You have to make a control group which stays focused on T and doesn't even go out

Add it to the list

I doubt it will happen though. It takes considerable effort to make big life changes.

It's obviously only applicable to anyone who wants to give it a shot. If you strongly feel there's no point then there's absolutely no need to do it.

I suppose it's not to be entirely scientific but just to see if some of the people here can turn their lives around.

 

[linearb]

@Ed209 I'm in. Good timing, I'm about to move and have a kid, and frankly I should put all this time into reading baby books and practicing my guitar.

That said, I don't think I'm as mental from all this at this point, as some people here. I lead a quasi normal life. I also know that the end result of spending less time here, for me, is less attention on tinnitus So, preaching to the converted... but still happy to be a lab rat in this.

 

[Foncky]

@Ed209 there is a point, no doubt ! I personally won't do it, because H is always here and is a different beast. And because I want to learn more and more about our hearing to try to raise awareness. Even if I'm quite ok with my loud changing T (not with H, not with hearing loss), I have suffered too much to let this place behind. I want to give something back one day.

 

[Ed209]

@Ed209 there is a point, no doubt ! I personally won't do it, because H is always here and is a different beast. And because I want to learn more and more about our hearing to try to raise awareness. Even if I'm quite ok with my loud changing T (not with H, not with hearing loss), I have suffered too much to let this place behind. I want to give something back one day.

Anyone who volunteers does not have to leave the forum forever. The aim is to break the early cycle some sufferers fall into.

 

[Foncky]

Yes, you're right. But what if there's a scientific breakthrough during those 3 months ?

 

[Candy]

Love the idea but embarking on a few new tests before I decide habituation is my only solution, after that would be interested...

 

[Ed209]

Yes, you're right. But what if there's a scientific breakthrough during those 3 months ?

Lol. I'm not trying to convince you Foncky, it's a free world buddy.

Although if there's a scientific breakthrough I think we'd all know about it whether we're on the forum or not. It would be pretty big news.

 

[Foncky]

Joking but you got me interested. I already do a lot of the things you listed... Why not trying the rest.

Were you not ready to leave 2 or 3 weeks ago ?

 

[Ed209]

Joking but you got me interested. I already do a lot of the things you listed... Why not trying the rest.

Were you not ready to leave 2 or 3 weeks ago ?

I know you were joking Foncky, I thought it was pretty funny.

Yea you're right I was supposed to be gone. I only returned and intended to make one post but I found myself getting drawn into a few discussions. I just felt I could help as some of the things I read resonated with me. Whether what I've added is interpreted as help is open to debate, but I've only ever contributed what I sincerely believe can help others, based upon my own journey back to some kind of sanity.

 

[linearb]

The stuff you're suggesting is pretty intense, it's the kind of thing a lot of people pay life coaches thousands of dollars to advise them to do, because it's easier to be diligent about big changes when there's money on the line. I believe that's why life coaches still exist in a world with Google.

Anyway, I'm in; I'll be your experiment subject 1, and not post here between 00:00:00 on 9/25/16 and 23:59:59 on 12/25 (an extra day since I don't want to be on the internet on Christmas, period, if I can avoid it). I'll then no doubt return having written a droll but extremely long book about the experience, which I'll copy paste here a page at a time.

Have a happy holiday, everyone

 

[Ed209]

The stuff you're suggesting is pretty intense, it's the kind of thing a lot of people pay life coaches thousands of dollars to advise them to do, because it's easier to be diligent about big changes when there's money on the line. I believe that's why life coaches still exist in a world with Google.

Anyway, I'm in; I'll be your experiment subject 1, and not post here between 00:00:00 on 9/25/16 and 23:59:59 on 12/25 (an extra day since I don't want to be on the internet on Christmas, period, if I can avoid it). I'll then no doubt return having written a droll but extremely long book about the experience, which I'll copy paste here a page at a time.

Have a happy holiday, everyone

Precisely linearb. What I'm suggesting, without a mentor of some kind, is incredibly difficult, but the way I look at it is everyone wants big changes to come easily. The reality of life is that big life changing problems often require incredible willpower and strength to pull through.

A lot would pay big money for help, but often find it hard to make lifestyle adjustments that only take effort and willpower.

Fair play to you though. I will admit this is not easy. I will also add it's precisely what I did to make huge strides forward in terms of my mental outlook. Although, I've always been a bit of a gym rat, but I hadn't been in over a year at the point my T got worse. Getting back into an exercise routine wasn't a big step for me, although it may be for others. Some of the other steps are easier as long as they are followed through with genuine effort to succeed.

 

[stophiss]

I appreciate the thought you put into this Ed, and have a slightly alternative strategy....but one that adheres to many of your core precepts.
This proposal would only represent a single data point....me....but nonetheless, I would be a reliable foot soldier.
I was wondering if the forum would pitch in for an all expenses paid vacation to Hawaii for me and a girl friend?Promise not to sign into the forum. We could take up a new hobby like parasailing over the ocean and I can wear earplugs when going out at night etc. As a fitness nut and triathlete, would be happy to engage in all the fitness activity you like. I can even experiment with different mixed drinks while out...or vary my diet say between lobster and fillet.
So I can adhere to most of your guidelines if you could convince forum members to chip in for myself and a girl friend for this well intentioned effort.
Upon return, I can sign back into the forum and update you on how my T is going.
Keep up the good work and let me know how the fund raising is going if you would and possible timing for this good cause.

 

[Ed209]

I appreciate the thought you put into this Ed, and have a slightly alternative strategy....but one that adheres to many of your core precepts.
This proposal would only represent a single data point....me....but nonetheless, I would be a reliable foot soldier.
I was wondering if the forum would pitch in for an all expenses paid vacation to Hawaii for me and a girl friend?Promise not to sign into the forum. We could take up a new hobby like parasailing over the ocean and I can wear earplugs when going out at night etc. As a fitness nut and triathlete, would be happy to engage in all the fitness activity you like. I can even experiment with different mixed drinks while out...or vary my diet say between lobster and fillet.
So I can adhere to most of your guidelines if you could convince forum members to chip in for myself and a girl friend for this well intentioned effort.
Upon return, I can sign back into the forum and update you on how my T is going.
Keep up the good work and let me know how the fund raising is going if you would and possible timing for this good cause.

I can assure you that my life turned around a long time before my wedding/holiday. I left TT around 5 months before that took place (returned after 6 with the intention to give just one post). I'm the type of guy who wouldn't have got on the plane to go at all, because I was in the wrong place emotionally to care about stuff like that. That's how I knew things had to change, and for the sake of my wedding decided to get my life in order.

I was interested to see if it could help others because I believe it is a huge step forward. I look at what some people are writing and I see depression and a deep obsession with tinnitus. This isn't always obvious to some having a hard time because they get too emotionally involved by talking and reading about it continuously. It can be extremely hard to break the shackles under these conditions. Maybe not for everyone but certainly for some.

I'm only trying to give something back. If it can help just one person out of a hole then it would be worth it.

 

[Zorro!]

Great idea Ed. As was mentioned though the issue would be motivating depressed tinnitus sufferers to conform to this new routine. But I think the abstract that you have proposed is a good template for others to work off of should they so choose.

 

[Ed209]

@Zorro!

I completely agree, it is a tall order. But, nothing worthwhile in life comes easy. Sometimes we have to rise above ourselves to make the changes we need to better our lives. I take inspiration from the many people around the world who show incredible human spirit in the most awful of situations. There are people on here whose stories show remarkable character, and I'd include billie48 and markku in this. Billies story is beyond words to be honest. To come through the other side of what he went through is beyond challenging. I saw what markku was going through and couldn't believe his luck. Yet he still manages to put immense effort into helping others via this site and through the research efforts of TT.

 

[valeri]

@Ed209

I would like to join if more people are interested.
I would like to suggest maybe some sort of contact between participants, email for example, as for me personally, when things get bad I need to have somebody to speak to.
I'm not strong enough to do it on my own.
The rest of the challenge should be OK to do.

 

[Fairy]

What people are looking for solutions. We want peace in our head. Not roundaround. Because we really don't know what we are dealing with. Getting on a chat board, really does not help, you do not have answers. You need a plan of action not b.s. By being a talk board, you go around in circles with no answers. You are lost. Really, people are sick with tinnitus and need help and a plan. Each person I notice is confuse. No help. There must be something wrong with medical profession. I have the same problem, no help. I noticed that there are no medical answers on this board. If is tinnitus, get help. Don't let people who don't know anything persuade you. It is a chat board, don't forget. It really does not help you. I would not want in B.S. study hurting with pain. Logic is not there. Count me out. This is the truth.

 

[Ed209]

What people are looking for solutions. We want peace in our head. Not roundaround. Because we really don't know what we are dealing with. Getting on a chat board, really does not help, you do not have answers. You need a plan of action not b.s. By being a talk board, you go around in circles with no answers. You are lost. Really, people are sick with tinnitus and need help and a plan. Each person I notice is confuse. No help. There must be something wrong with medical profession. I have the same problem, no help. I noticed that there are no medical answers on this board. If is tinnitus, get help. Don't let people who don't know anything persuade you. It is a chat board, don't forget. It really does not help you. I would not want in B.S. study hurting with pain. Logic is not there. Count me out. This is the truth.

Fairy that's completely fine. This is not for everyone, but it may help others. I'm certainly not expecting everyone to just jump at this, but to anyone who is up for it, the option is there.

Unfortunately without a cure there's not much else that can be done. One of my former students had Freidreich's Ataxia, which causes progressive damage to the nervous system causing paralysis and poor coordination. In the end she had to give up on her greatest passions which were art and music because she lost the coordination skills in her hands. At this point she was already in a wheel chair. Every lesson I had with her was a complete joy as she was always smiling and laughing; it was an incredible eye opening experience teaching her guitar. I'm still in touch with her now and she's still happily enjoying life.

Sometimes when we are dealt bad cards we have to face them and find some kind of acceptance. Only then can we move on with our lives.

 

[stophiss]

I can assure you that my life turned around a long time before my wedding/holiday. I left TT around 5 months before that took place (returned after 6 with the intention to give just one post). I'm the type of guy who wouldn't have got on the plane to go at all, because I was in the wrong place emotionally to care about stuff like that. That's how I knew things had to change, and for the sake of my wedding decided to get my life in order.

I was interested to see if it could help others because I believe it is a huge step forward. I look at what some people are writing and I see depression and a deep obsession with tinnitus. This isn't always obvious to some having a hard time because they get too emotionally involved by talking and reading about it continuously. It can be extremely hard to break the shackles under these conditions. Maybe not for everyone but certainly for some.

I'm only trying to give something back. If it can help just one person out of a hole then it would be worth it.

Totally cool Ed. Was having some fun. And you are completely correct. There should be a bold sticky at the header of the page. Anxiety is partly not only the precipitating contributing factor to tinnitus based upon interaction with brain chemistry, serotonin and hormone levels, but also focus and perpetuation of it. Anxiety, terror and depression are a chronic cycle woven around the fabric of tinnitus and countlessly reported here and yes breaking this chronic cycle is key. I believe your quasi scientific method is overly contrived but your point is well made and agree the cornerstone of moving on with one's life when contracting T. Even the thread 'fogetaboutit' had this as a theme.

If you still want to reward my support of your noble cause with a trip to Hawaii and you think you can get the support together, I am still willing to participate.
Cheers brother

 

[stophiss]

What people are looking for solutions. We want peace in our head. Not roundaround. Because we really don't know what we are dealing with. Getting on a chat board, really does not help, you do not have answers. You need a plan of action not b.s. By being a talk board, you go around in circles with no answers. You are lost. Really, people are sick with tinnitus and need help and a plan. Each person I notice is confuse. No help. There must be something wrong with medical profession. I have the same problem, no help. I noticed that there are no medical answers on this board. If is tinnitus, get help. Don't let people who don't know anything persuade you. It is a chat board, don't forget. It really does not help you. I would not want in B.S. study hurting with pain. Logic is not there. Count me out. This is the truth.

I believe you are missing the point. Ed is actually correct. His so called study captures the rudiments of habituation and cognitive behavior therapy. This is all we have Fairy. There is no cure. This is what the board teaches us. Yes there are other small things we can do to cope that this board also teaches...which are rooted in common sense...like getting enough sleep if possible...good diet and exercise and wearing hearing protection in loud places.
So there is concrete advice given. Yes there are theories bandied about as well. People searching for answers. Anxiety is the cornerstone of this disorder and from what I have observed including me personally, a precipitating agent of tinnitus. Which came first? Anxiety or tinnitus? I would submit anxiety and perhaps a life long of too much anxiety which morphs neuroplasticity away from normalcy...that interacting with degraded hardware either due to genetics and too much noise aka environment. Yes, these are theories. All we have. But the best coping solution is adaptation and acceptance of tinnitus which is virtually impossible if overrun with anxiety.

 

[Ed209]

I believe you are missing the point. Ed is actually correct. His so called study captures the rudiments of habituation and cognitive behavior therapy. This is all we have Fairy.

Cheers stophiss, although I wouldn't call it a study, merely advice that may help.

If enough people gave it a go you could call it a study though

It is as you stated just a good path to habituation. Also, I forgot to point out how important sleep is as you rightly added. Not just for tinnitus either, but for general health and learning ability.

 

[william adams]

Ed I am totally in for this experiment if we want to call it that for T seems to be a form of obsessive compulsive disorder after its onset. Is it louder, has the pitch changed, lets read what others are experiencing, the list goes on and on. Let us no when we shall start and our return date so we can share our experience and hopefully Some of us will be better with our conditions...

 

[stophiss]

Ed I am totally in for this experiment if we want to call it that for T seems to be a form of obsessive compulsive disorder after its onset. Is it louder, has the pitch changed, lets read what others are experiencing, the list goes on and on. Let us no when we shall start and our return date so we can share our experience and hopefully Some of us will be better with our conditions...

or...people with OCD and anxiety disorder are more predisposed toward tinnitus. So it seems by anecdotal accounts on forums like this. This predisposition worsens with onset of tinnitus. Overwhelming number of threads on tinnitus forums pertain to anxiety. Chicken or egg, which came first. Many precipitating conditions associated with tinnitus pertain to life altering stress or depression as a precursor and no doubt cure for tinnitus which is a brain disorder effectively based upon neural pathways gone awry...will surround addressing anxiety and depression if not OCD.

 

[Ed209]

Well it seems so far linearb and William Adams are willing to give it a go. Valerie is a possibility. Linearb has already started and will report back around Christmas time. I suppose it depends if anyone else wants to try. A group of you doing it together may be a better way of organising it.

If no one else wants to do this then all I can suggest is you individually start and finish in your own time scale. Simply report back - after 3 months - how you feel mentally and emotionally. Give an idea of what hobby you picked and how long you spent doing it etc. You could also give a honest account of how your diet and exercise routine went.

A good side effect of improved diet and exercise is better sleep, which can further help some people's T.

An ideal candidate maybe @Marie79. You seem ideally suited to this in my opinion.

 

[linearb]

just an update from me...

moved to the woods, it's quiet and beautiful, we had a baby and she's happy and healthy despite being a little early. So, much to be thankful for!

Tinnitus is still a drag, maybe it always will be. I've done okay avoiding forums, I've been less diligent about daily exercise and better diet, but will continue to work on it.

So, no silver bullets here, but I still think the basic premise of the OP is good. And, frankly, returning to this place with fresh eyes after a break... I think it's pretty toxic for me, the endless negativity and people being ripped apart for trying to be positive just doesn't do anything helpful for me (I can see four threads that follow that basic pattern right on the front page now). I get that it's hard, or even feels patronizing, to read people trying to be optimistic when we're really suffering. That said, I've been dealing with this for lonnnnng time, it's loooooud and painful, and I still think optimism is often useful and pessimism is generally useless. Take that as you will, I'm not interested in trying to defend that view against the braying and naying of the court of public opinion here; that's my story and I'm sticking to it. One post every three months might be about the right cadence for me, in which case, perhaps I'll bump this at the end of March.

Happy new year! I think my PMs are enabled again, feel free ping me there if you want to chat.

 

[Ed209]

Like I said on the other thread: congratulations on the birth of your baby, and thanks for taking part.

Not so much an experiment but more one mans experience, or two if you count me.

I agree it gives you a fresh perspective, and I find it can unclutter the mind somewhat.

 

[maltese]

How did I miss this thread?

small goals first - see you all in a week