The Addictive Nature of Tinnitus Talk...

[Starthrower]

Hummm...good question Markku. I am not sure. Reading some of the responses in the Success stories it seems like people are let down when it isn't "cure" but habituation. Yet others find a lot of hope to carry on reading about people who have moved on and are okay.

I guess the newer tinnitus sufferers should add some thoughts on what they think and feel?

 

[Bill Bauer]

What about threads that have elements of both reduction in loudness and habituation? Should a thread not have the habituation tag at all if there is any kind of reduction in loudness reported?

I would try to determine whether the poster is saying that he or she was able to habituate as a result of T getting a lot quieter. I think this would still qualify as (partial) healing. It would be especially true if that individual were to report T changing from loud to quiet/bearable.

If the individual is saying that he or she managed to eventually habituate despite his or her T Still being loud (albeit getting somewhat quieter compared to its level right after onset), then that is not what a newbie would normally consider to be healing.

I will take on this project. I'll comb through all the 608 success story threads during the next week and mark each thread with a prefix/tag that can be used to filter the threads.

Thank you! I am sure that most current and future users will appreciate the result!

Ideally the non-habituation threads would have a tag too so that they can be filtered to be visible (in turn habituation threads hidden).

What short phrase would be most descriptive for those?

Spontaneous recovery? Significant volume reduction?

 

[Greg Sacramento]

@Markku I would like to jump into this discussion if I may. This may not have as much interest as with the validity of the relevant topics mentioned in this tread, but how about at a later date to mark success stories in relation to physical tinnitus.

My neuro who had recently attended a conference said that many members expressed that physical tinnitus isn't caused by neck problems as much as claimed, unless a nerve is damaged or compressed. He said more evidence points to stress and pressure influence to the jaw as a major cause of physical tinnitus. Often when the jaw has issues, the neck will show trauma as well.

 

[Jazzer]

Very worthwhile,
and could stop a few punch ups......
Should keep everybody happy.......

 

[volsung37]

Management is the only way forward for most of us. Maybe the teenagers or twenty somethings might have a glimmer of hope for a cure. However given that 19 out of 20 serious medical conditions have no cure and there are no cures for neurological conditions the outlook is pretty bleak

 

[vermillion]

My emotions about this forum had been fluctuating through my first year as a member. Love, hate, anger etc. But I couldn't have a day without spending countless hours reading it's threads, even when I was feeling that some stories were intensifying my suffering. Today I don't feel addicted anymore, nor I read many personal stories, even the 'success' ones. I mostly visit the 'research' forum and few threads of the 'treatments' one. I also concluded that I have much respect for TT and notable members such as @attheedgeofscience @Aaron123 among others. I am also touched by how members have been eager to help me throughout personal communication I had with them. I am also touched how members have tried to support other members in very hard times through public talks. In conclusion I like the "uncensored" character of TT. Even when it comes to suicide stories, because it's a part of T reality. Through TT I've came across with scientific information which was my point of reference for further reading and has done good to my state of mind. Facebook support groups and other forums are still limited in suggesting Gingko Biloba as a treatment example which is a big joke. I once read a thread elsewhere about TT where members condemned it for the damage that causes to the tinnitus community through threads about medication usage, such us Trobalt. There I understood why tinnitus sufferers owe a part of responsibility for holding back the research. Ignorance, conservative point of view and pure stupidity.

 

[TheDanishGirl]

Same I'm cure driven in hopes of scientific research giving me a second chance at hearing and silence.
In the mean time my life is going to be super miserable.

Same I have a few glimmers of "good moments" here and there, but all in all, my life has become very low quality.

 

[SugarMagnolia]

I am very grateful that this community exists. I am reading valuable information and I feel less alone. Thanks to everyone!

 

[threefirefour]

Management is the only way forward for most of us. Maybe the teenagers or twenty somethings might have a glimmer of hope for a cure. However given that 19 out of 20 serious medical conditions have no cure and there are no cures for neurological conditions the outlook is pretty bleak

But at least they have treatments. Tinnitus is in a very unique position where it's extremely common, yet there's absolutely nothing to treat it.

 

[Markku]

I would try to determine whether the poster is saying that he or she was able to habituate as a result of T getting a lot quieter. I think this would still qualify as (partial) healing. It would be especially true if that individual were to report T changing from loud to quiet/bearable.

If the individual is saying that he or she managed to eventually habituate despite his or her T Still being loud (albeit getting somewhat quieter compared to its level right after onset), then that is not what a newbie would normally consider to be healing.

I like this approach.

Spontaneous recovery? Significant volume reduction?

I rather not make the tag too long (as it appears in front of the thread title and it can appear unwieldy if it's three words).

Could simply "Volume Reduction" work?

@Markku I would like to jump into this discussion if I may. This may not have as much interest as with the validity of the relevant topics mentioned in this tread, but how about at a later date to mark success stories in relation to physical tinnitus.

My neuro who had recently attended a conference said that many members expressed that physical tinnitus isn't caused by neck problems as much as claimed, unless a nerve is damaged or compressed. He said more evidence points to stress and pressure influence to the jaw as a major cause of physical tinnitus. Often when the jaw has issues, the neck will show trauma as well.

I like your idea Greg. It is possible to mark a thread with multiple tags, so we can revisit how to approach your idea at a later date. I'll first focus on the volume reduction vs. habituation angle, as this might be a priority.

My emotions about this forum had been fluctuating through my first year as a member. Love, hate, anger etc. But I couldn't have a day without spending countless hours reading it's threads, even when I was feeling that some stories were intensifying my suffering. Today I don't feel addicted anymore, nor I read many personal stories, even the 'success' ones. I mostly visit the 'research' forum and few threads of the 'treatments' one. I also concluded that I have much respect for TT and notable members such as @attheedgeofscience @Aaron123 among others. I am also touched by how members have been eager to help me throughout personal communication I had with them. I am also touched how members have tried to support other members in very hard times through public talks. In conclusion I like the "uncensored" character of TT. Even when it comes to suicide stories, because it's a part of T reality. Through TT I've came across with scientific information which was my point of reference for further reading and has done good to my state of mind. Facebook support groups and other forums are still limited in suggesting Gingko Biloba as a treatment example which is a big joke. I once read a thread elsewhere about TT where members condemned it for the damage that causes to the tinnitus community through threads about medication usage, such us Trobalt. There I understood why tinnitus sufferers owe a part of responsibility for holding back the research. Ignorance, conservative point of view and pure stupidity.

Thank you vermillion for the nice post. This kind of feedback is what keeps us going. It's a difficult and constant balancing act, and no matter what we do, there will always be some vocal people who doubt our intentions for having allowed topics on a variety of topics, including suicide, or not always ending discussions early enough, etc. It's sometimes quite an unrewarding position to be in, having to make the judgment calls and listen to your character being attacked as a result. Thankfully the positive comments and feedback far outweigh the negative ones.

Speaking of which, @Steve is traveling tomorrow morning to Germany to attend the TRI conference. He has to take the rest of the week off from his day job. We prepared a presentation for the conference last week, and Steve will be acting as a conference reporter alongside BTA's David Stockdale.

I would sometimes like to see such advocacy efforts from those who have mostly nothing but negative remarks to spread. I wish more people would try and do their part to make the community flourish, help with various tinnitus initiatives (across the board - not necessarily just on TT).

But - thank you.

 

[Starthrower]

Speaking of which, @Steve is traveling tomorrow morning to Germany to attend the TRI conference. He has to take the rest of the week off from his day job. We prepared a presentation for the conference last week, and Steve will be acting as a conference reporter alongside BTA's David Stockdale.

I was just talking to my husband about this. I have been explaining Tinnitus Hub/Tinnitus Talk with him. This is a big contribution for everyone having Steve take personal time off work and traveling to the TRI conference to bring more awareness towards tinnitus and the effects of it on all of us. I look forward to his reports! Thanks to Steve and to Markku.

It's sometimes quite an unrewarding position to be in, having to make the judgment calls and listen to your character being attacked as a result. Thankfully the positive comments and feedback far outweigh the negative ones.

I am moving forward to stop this from continuing and it is/was one reason I decided to get back into this support arena was because I read what was being said and I knew the truth. The truth in character and integrity of both you and Steve are remarkable - despite the lies and attacks. I am not going to let it happen anymore.

About success stories. How I Learned To Live with tinnitus? Still thinking.

 

[Bill Bauer]

Could simply "Volume Reduction" work?

I was going to suggest something similar! It all boils down to volume reduction and the degree to which the volume is reduced...

 

[Starthrower]

But then the old conflict replies of: It isn't the volume actually reducing it is your Perception!!!

Arggg....

 

[Steve]

I was going to suggest something similar! It all boils down to volume reduction and the degree to which the volume is reduced...

But then the old conflict replies of: It isn't the volume actually reducing it is your Perception!!!

Arggg....

Absolutely right @Starthrower

@Bill Bauer the important thing to remember is that we have many different experiences of tinnitus. It's easy for us to ascribe our own as the norm, and this is why there is so much argument.

It is no less valid that someone is able to find huge relief from a perception reduction than from a volume reduction. The argument is essentially pointless. A person found a way to improve their tinnitus and move on, that's the important thing.

Where we get hung up relates to something not working for us. I can't just move on, this is not a help so it doesn't work. We need to recognise that any treatment strategy will only work for a certain number of people. The root causes, especially if there are several, are too complex to boil down to one single approach working for all.

Unless we have an objective measure there is no way of ever knowing if the volume actually has reduced, or if it is the reduction of perception that has made the individual feel like a volume reduction.

@Greg Sacramento has a similar experience to me with the physically influenced side of tinnitus, in this case I can say very surely that I have volume differences because of physical exertion or tension. The somatic component can lead to some very large fluctuations. If you do not have a very obvious physical link to your tinnitus then it isn't so cut and dried.

I think that our focus as a patient collective needs to shift from treatment / outcome x is rubbish, to treatment / outcome x works for a percentage. Being in the group that have not been able to forget about tinnitus and move on (yet) should not make us resentful of those that have.

I would much rather see this energy devoted to doing something about it. Help out, suggest how we can change things, be a part of that change.

I agree that we need to put people into groups of how they improved, but for me this is to understand why they are in a group, what can we learn from it? We have a great data pool here and the potential to contribute a lot more to research from our combined experiences.

 

[Zug]

Absolutely right @Starthrower

@Bill Bauer the important thing to remember is that we have many different experiences of tinnitus. It's easy for us to ascribe our own as the norm, and this is why there is so much argument.

It is no less valid that someone is able to find huge relief from a perception reduction than from a volume reduction. The argument is essentially pointless. A person found a way to improve their tinnitus and move on, that's the important thing.

Where we get hung up relates to something not working for us. I can't just move on, this is not a help so it doesn't work. We need to recognise that any treatment strategy will only work for a certain number of people. The root causes, especially if there are several, are too complex to boil down to one single approach working for all.

Unless we have an objective measure there is no way of ever knowing if the volume actually has reduced, or if it is the reduction of perception that has made the individual feel like a volume reduction.

@Greg Sacramento has a similar experience to me with the physically influenced side of tinnitus, in this case I can say very surely that I have volume differences because of physical exertion or tension. The somatic component can lead to some very large fluctuations. If you do not have a very obvious physical link to your tinnitus then it isn't so cut and dried.

I think that our focus as a patient collective needs to shift from treatment / outcome x is rubbish, to treatment / outcome x works for a percentage. Being in the group that have not been able to forget about tinnitus and move on (yet) should not make us resentful of those that have.

I would much rather see this energy devoted to doing something about it. Help out, suggest how we can change things, be a part of that change.

I agree that we need to put people into groups of how they improved, but for me this is to understand why they are in a group, what can we learn from it? We have a great data pool here and the potential to contribute a lot more to research from our combined experiences.

Hey @Steve , I was under the impression that you where pretty much habituated to your Tinnitus, now I'm in doubt... Are you speaking about yourself or more in the majestic plural?

Myself, I don't come here too much anymore. Once things started moving forward, now and then I come to check how some people are doing and lend a hand to the people who seem to be suffering. My guess is that a lot of the newcomers don't have much contact with people who "graduated", it always seems like the same discussion (one thinks habituation is impossible, until it starts happening to you).

Best,
Zug

 

[Bill Bauer]

It is no less valid that someone is able to find huge relief from a perception reduction than from a volume reduction.

The problem is that some of us Know that we will NOT find any relief from a perception reduction. Our only hope is volume reduction.

Nobody claimed that it is invalid for someone to get relief from habituation. Some of us just want to be able to identify those posts where the improvement that had happened is the kind of an improvement that we are interested in reading about.

there is no way of ever knowing if the volume actually has reduced

If there is any uncertainty about that, then I think it is safe to assume that the volume Has NOT actually reduced. When it is reduced, one doesn't need to guess - one KNOWS, one Can Tell.

 

[Hazel]

I would sometimes like to see such advocacy efforts from those who have mostly nothing but negative remarks to spread. I wish more people would try and do their part to make the community flourish, help with various tinnitus initiatives (across the board - not necessarily just on TT).

I would much rather see this energy devoted to doing something about it. Help out, suggest how we can change things, be a part of that change.

Yes, please! There's a much more constructive way of advocacy than putting other people down for posting habituation success stories; I just fail to see the point of that, what is it supposed to accomplish? So to everyone worried about not enough time/energy/money going into a cure, why not spend some of your own resources (whatever you have to offer) to become active for Tinnitus Hub - or any other relevant organisation?

 

[glynis]

We have a few members on here whom I know would be great in the advocate team and Im sure they know whom they are so please get intouch with @Markku and @Steve as we all can make a difference as a team.
Good luck @Steve at the TRI Confernce .
Love glynis

 

[Steve]

Nobody claimed that it is invalid for someone to get relief from habituation. Some of us just want to be able to identify those posts where the improvement that had happened is the kind of an improvement that we are interested in reading about.

I didn't mean you personally, more of a general theme that seems to repeat.

one KNOWS, one Can Tell.

Do you have a physical element to your tinnitus? I know from that part that I can tell but genuinely with the non physical related tones I often wonder if they are louder or similar to a year or 5 years ago. I used to gauge it by being masked outdoors by certain things. But I still wonder if the non physical tones are louder because they are actually louder, or louder because my brain has un-learnt masking.

I'm being a bit of a devils advocate here, not necessarily questioning anyone else situation but trying to think representatively. I'm also writing from before airport and in airport so I'm possibly not considering replies

Yes, please! There's a much more constructive way of advocacy than putting other people down for posting habituation success stories; I just fail to see the point of that, what is it supposed to accomplish? So to everyone worried about not enough time/energy/money going into a cure, why not spend some of your own resources (whatever you have to offer) to become active for Tinnitus Hub - or any other relevant organisation?

I do often feel deeply frustrated at the effort that can go into certain activities but not towards doing more for the community. No fingers at anyone in this thread by the way, just a general opinion.

Part of this is maybe that we get on with a lot of things in the background, we probably need to be more overt about the things we're doing at any one time.

 

[Greg Sacramento]

@Steve and others thank you. I was able over time to adjust to my first loud buzzing noise subjective T caused by noise trauma as I explained in a day old post just before this post that's in my history. It's a very positive posting. With my newer form of T, I have a sharp high somatic pitch, but I also have rare heart disease and that's complicating things.

From different studies of somatic tinnitus, I think many can benefit. If a starting point cause tells another area to come join me in discomfort, then it's like who did it and guessing may begin. I like to team with those that post with somatic/physical T. There's are a few methods from brilliant researchers that can be (sometimes) used within domino effect situations that could point to what really caused the T. I think that Modulation discovery may help, hearing and diagnostic testing may be helpful.

Right now for me, I have been enjoying the pictures of cats and dogs, country scenery, favorite movies ... from members .

 

[Steve]

Hey @Steve , I was under the impression that you where pretty much habituated to your Tinnitus, now I'm in doubt... Are you speaking about yourself or more in the majestic plural?

Myself, I don't come here too much anymore. Once things started moving forward, now and then I come to check how some people are doing and lend a hand to the people who seem to be suffering. My guess is that a lot of the newcomers don't have much contact with people who "graduated", it always seems like the same discussion (one thinks habituation is impossible, until it starts happening to you).

Best,
Zug

Yes I was speaking as a group in general rather than from my own position

I would say that I'm pretty much habituated. It doesn't stop me from wanting more but I don't count myself in the "suffering" group.

 

[Zug]

Yes I was speaking as a group in general rather than from my own position

I would say that I'm pretty much habituated. It doesn't stop me from wanting more but I don't count myself in the "suffering" group.

Same here.

Keep up the good work!!

Best,
Zug

 

[GregCA]

The problem is that some of us Know that we will NOT find any relief from a perception reduction. Our only hope is volume reduction.

What's the difference between volume reduction and perception reduction?

 

[threefirefour]

What's the difference between volume reduction and perception reduction?

Perception means they notice it less, but the volume is the same. Volume reduction means the tinnitus actually went down in volume.

 

[TheDanishGirl]

For me the difference between perception and actual reduction is this:

If a person with perceived volume reduction sat in a completely silent room and focused their full attention on T it would sound as loud as it has always been.

A person with actual reduction in volume sat in the same silent room, focusing their attention on T, would still be able to hear that it has gone done in volume /it would sound lower.

 

[Contrast]

Perception means they notice it less, but the volume is the same. Volume reduction means the tinnitus actually went down in volume.

They notice it less because they have a positive mindset and the power of positivity helps them over come the struggles of tinnitus regardless of the volume.

 

[threefirefour]

View attachment 15599




They notice it less because they have a positive mindset and the power of positivity helps them over come the struggles of tinnitus regardless of the volume.

Absolutely! Mind over matter MFers! The strongest force for tinnitus is willpower and a positive mindset! If you think you can, you can!

 

[Steve]

Even though you're both being sarcastic you're nearly saying the correct thing, but in the opposite.

It isn't necessarily about a positive mindset, rather not having a negative and self defeating mindset. If you keep telling yourself you have things hard, latching onto the negative, this is too big to win, I can't ever handle it. Then it's like to become a self fulfilling prophecy and you can't turn a corner.

It doesn't need to be unicorns and rainbows, it's about digging out of a spiral of negativity. Anyway that's veering off-topic....

 

[Hazel]

They notice it less because they have a positive mindset and the power of positivity helps them over come the struggles of tinnitus regardless of the volume.

They notice it less because, well, that's just what happens over time (for most people) once they start focusing their attention elsewhere. It's already happening to me; most of the time I just don't hear it anymore. I'm not going to let anyone tell me I shouldn't feel happy about that; having your life back (that's what it feels like) is no trivial matter.

 

[glynis]

When tinnitus is taking over your day and mood it's so easy to sink into a day of gloom and depression and no energy do anything and everything seems so hard to do zaping your energy.
I know how it feels.
Putting in effort to get out of the house and mixing with people sounds hard to do but you will get through the day better and know you did get through a tough day and be proud of yourself.
Build on these days and expand what you can do to get out of a low day with tinnitus.
Having a down time is normal but don't let it consume every day.
Love glynis