Awareness Idea for Patient Research: Join the Dots

[Cityjohn]

I like this idea very much. Joining the dots can result in a theoretically accurate model.
What is the suggested format for this effort?

 

[ryant]

I've also thought about the link between decreased gray matter and tinnitus. Here are a couple of things I found:

A consistent long-term routine of aerobic exercise has been shown to increase gray matter. http://www.neurobiologyofaging.org/article/S0197-4580(14)00349-2/pdf

Meditation has been shown to help increase gray matter as well. Although it has been difficult for me to meditate when all I can hear is tinnitus when the surroundings are really quiet.

Combining omega-3 fatty acids with increased aerobic exercise can help to preserve gray matter... http://www.ncbi.nlm.nih.gov/pubmed/26433119

 

[Path Maker]

@ryant Maybe it could help to meditate with masking on?

 

[ryant]

@ryant Maybe it could help to meditate with masking on?

That's a great idea. I have a couple of these: http://lectrofan.com I use one at work in a quiet office and one at home when I'm sleeping, it works pretty well. I'm thinking a routine of aerobic exercise, 5 days a week for 20-30 minutes may help. Being consistent with an exercise routine is something I've haven't been good with. Gonna try to get back into it the habit. I've started to take an omega-3 supplement too. Found one that has a really high DHA concentration: http://www.swansonvitamins.com/asce...a-juicy-citrus-flavor-6-8-fl-oz-200-ml-liquid

 

[Steve]

@ryant Maybe it could help to meditate with masking on?

Meditation has been shown to help increase gray matter as well. Although it has been difficult for me to meditate when all I can hear is tinnitus when the surroundings are really quiet.

Actually that's similar to something I would like to try out. Not masking but distracting sounds. Nothing that masks the tinnitus but something to act as a focus so the meditation can be on the sound and concentration on pushing the tinnitus away in favour of the sounds.

Not constant sound - I intuitively feel that a constant sound is bad for tinnitus (no scientific basis for this at all). For me it should be a series of sounds, maybe bell type sounds. I have a lot of musical material that will work for this but need to sit down and go through it to make it work.

I like this idea very much. Joining the dots can result in a theoretically accurate model.
What is the suggested format for this effort?

To begin maybe split a thread up into research questions. You mentioned developing a chart to show the areas to concentrate on, which I think will be an excellent idea - something to focus on and develop ideas around.

I'm on a training course this week so I'll get back to this properly soon. I can feel some real ideas here, we'll need to develop a good format to throw ideas around and build the evidence and experiments.

 

[Path Maker]

Actually that's similar to something I would like to try out. Not masking but distracting sounds. Nothing that masks the tinnitus but something to act as a focus so the meditation can be on the sound and concentration on pushing the tinnitus away in favour of the sounds.

Not constant sound - I intuitively feel that a constant sound is bad for tinnitus (no scientific basis for this at all). For me it should be a series of sounds, maybe bell type sounds. I have a lot of musical material that will work for this but need to sit down and go through it to make it work.

I think this is a neat idea! I would love to hear more about it when you've done it!

As an aside, there is a single bell tone that is struck for all the videos made by Eckhart Tolle, and it would probably hurt the ears of people who suffer from significant hyperacusis, but when I keep it on lower volume, I am actually surprised that it sounds comforting in some way, and does momentarily distract.

You can go on youtube and click on something of his to see. It is the sound that is made after the opening graphic, which shows an infinity symbol in motion.

 

[Kste Adams]

I love the idea of patient research. We've become citizen scientists as we try to cope with the unwanted and noisy "guest" in our heads and we have a wealth of information to share. I think our efforts can help speed up the research that's taking place around the world by providing data and finding correlations that professional scientists may not find as easily.

 

[Starthrower]

There is a big difference in my situation regarding music therapy and the positive results I have had over the past decade. I would like to see if it could be studied or related to the dot connection.

So many of you under the age of maybe 40 don't remember using any other form of music listening other than digital like found on the I phones.

My situation does not allow me to use that type of device for my DYI therapy. The purity or something in that form makes my brain tinnitus edgy and louder. I find the old cassette tapes on a walkman, yes many do not know what that is, works VERY well for therapy along with Bose head phones and I never use in ear buds.

For the same reason I find it hurtful to talk on my I phone for any amount of time.

 

[Ears Hurt]

Actually that's similar to something I would like to try out. Not masking but distracting sounds. Nothing that masks the tinnitus but something to act as a focus so the meditation can be on the sound and concentration on pushing the tinnitus away in favour of the sounds.

Not constant sound - I intuitively feel that a constant sound is bad for tinnitus (no scientific basis for this at all). For me it should be a series of sounds, maybe bell type sounds. I have a lot of musical material that will work for this but need to sit down and go through it to make it work.

I start a meditation class this Saturday. It is free with my yoga sessions. Anyway, I feel like the silence would not be good for meditating with T, so I am interested in getting any of your musical material that you come up with for meditation. I already talked to my instructor and he will allow me to play during the session if he can hear a sample first. Or do you have other recommendations that I could use in class?

 

[Ears Hurt]

I love the idea of patient research. We've become citizen scientists as we try to cope with the unwanted and noisy "guest" in our heads and we have a wealth of information to share. I think our efforts can help speed up the research that's taking place around the world by providing data and finding correlations that professional scientists may not find as easily.

It is a great idea. We can give researchers access to data that would be generated directly from the source of the suffer.

 

[Ears Hurt]

I found this article on meditation and the brain. It seems as if meditation is the best way to build the prefrontal cortex.

https://blog.bufferapp.com/how-meditation-affects-your-brain

 

[Steve]

Excellent work so far.

We're going to open up a new section for this and divide up into areas for each research question. Coming soon....

There is a big difference in my situation regarding music therapy and the positive results I have had over the past decade. I would like to see if it could be studied or related to the dot connection.

We were talking about this, there seem to be many people over time that develop reactive tinnitus, can't listen to white noise, some music and sounds etc. Interesting to understand what the mechanism is and if there is a hypothesis on interrupting it. I can't say that I know any.

I found this article on meditation and the brain. It seems as if meditation is the best way to build the prefrontal cortex.

https://blog.bufferapp.com/how-meditation-affects-your-brain

I'll have a look at music as a guide. If we can pair meditation with some specific music to concentrate on this could be a good thing to explore. It's possibly best to take a technique and adapt it a little to hopefully work for us.

 

[Sara_Bond]

For the same reason I find it hurtful to talk on my I phone for any amount of time.

Noticed the same.

 

[Sara_Bond]

@Steve

And what about T&H?

 

[Starthrower]

Thanks Steve! It will be excellent to have different break down categories.

I find this hard to explain, not being very technical smart, and hard for some of the young to grasp, when I try to explain the difference between the tonal quality of the cassette tape and the quality of the digital recordings.

I liken it to entering a room with old florescent lighting or entering a room and turning a light on which has one of the newer LED bulbs.

There is this energy that affects the way the brain processes this stimuli and the tinnitus is louder or more vibrating inside the ear drum.

But my brain picks up on this in both instances.

When I do my DYI music therapy I listen for specific tones - instrumental like the guitar or violin - now I only listen to country....each song I will pull out one sound to listen for and focus on throughout the entire song. And then I will listen to the song with all the tones at once.

Doing this once or twice a day I find at night when I try to go to sleep the repetitiveness - is still there to concentrate on. It is all a mind game for me when it comes to getting to sleep.

I think that is one of the reasons for the failure of the latest music therapies out there today.

Not to forget I have had tinnitus since 2002. And life is great for me for the most part (with the same tinnitus).
But I so remember those first years as I read the support section.

 

[Ears Hurt]

@Steve I am looking forward to the research questions.

I have to agree with the reactive T comment. I can't listen to certain things because my T tries to one up the sound and beat the purpose of it.

 

[Ears Hurt]

I just stumbled across another activity that grows your prefrontal cortex, and it's so simple that everyone can do it. So get out your adult coloring books everyone! I am still digging into research, but I've read great things so far. Stay inside the lines!

 

[PaulBe]

For the same reason I find it hurtful to talk on my I phone for any amount of time.

Myself also. I wonder if its all to do with sound compression.

 

[Ears Hurt]

For me it should be a series of sounds, maybe bell type sounds. I have a lot of musical material that will work for this but need to sit down and go through it to make it work.

@Steve H just making a suggestion that in addition to bell sounds to use the Tibetian bowl sounds. There is some literature on this calming tinnitus. I need to try to find it again.

 

[Steve]

Noticed the same.

@PaulBe Actually I have the same. I absolutely cannot use a phone to my ear now. The very odd occasions where I feel I need to take a call I get a spike straight after, which is usually accompanied by by hearing going dull. I think that sound compression could be the reason.

I find this hard to explain, not being very technical smart, and hard for some of the young to grasp, when I try to explain the difference between the tonal quality of the cassette tape and the quality of the digital recordings.

There is a lot of back and forth in the audio community around this, often getting very heated. In short, the theory says that anything above 44.1kHz sample rate (CD quality) is pointless as this sample rate provides all the auditory information we need / can perceive. I have some incredibly unscientific and anecdotal evidence on myself and others that mixing sound at a higher sample rate seems to have a different effect on tinnitus, when it's for therapy.

I have often wondered what the effect of digital music - most of what we hear is also compressed, removing further auditory data - has on an already damaged auditory system. We could test this, could be an interesting research question, can sound enrichment using higher sample rates perform better than enrichment at standard CD quality sample rates?

@Steve H just making a suggestion that in addition to bell sounds to use the Tibetian bowl sounds. There is some literature on this calming tinnitus. I need to try to find it again.

I've got a really nicely recorded sample pack of tibetan bowls, just need to check the sample rate now

 

[Steve]

@DebInAustralia linked me to Norman Doidge, which got me watching this video

And then you can travel on a multitude of different paths looking at the research on neuroplasticity. It's fascinating and I'm sure that we can find something here to support the theory of body-mind based training growing the grey matter in the vmPFC.

 

[Ears Hurt]

Tinnitus and the Tibetan Bowls

http://michellephan.com/sound-therapy-singing-bowls-healing/

 

[Sara_Bond]

@Steve

I was thinking, at my earlier stage of T, I had bad anxety and panick attacks. I didn't take any medicine only plants but I reached a point where plants could do nothing and my body was exhausted. So I took some bendiozepine to help me relieve with my anxiety.

The thing is that benzos help reduce T especially when T is spiking. I read that benzos acted on GABA transmitters. Maybe there is a way to help researches on this path?

I know it's not a long term therapy but fron time to time when T is unbearable it can help.

 

[Steve]

@Steve

I was thinking, at my earlier stage of T, I had bad anxety and panick attacks. I didn't take any medicine only plants but I reached a point where plants could do nothing and my body was exhausted. So I took some bendiozepine to help me relieve with my anxiety.

The thing is that benzos help reduce T especially when T is spiking. I read that benzos acted on GABA transmitters. Maybe there is a way to help researches on this path?

I know it's not a long term therapy but fron time to time when T is unbearable it can help.

There is already a body of research on GABA. I'm not hugely familiar with it but at the very least it will be good to gather it in one place and see what the studies tell us.

I think the biggest issue is with the medications. Benzo's are pretty awful if taken for any length of time, however they can be very useful as a temporary crutch to relieve the anxiety response.

 

[Zug]

That's something to set up.

First step is to look at the existing research and see if there is definitely a link between some of the body based practices and an increase in this specific region. Then we can design some monitoring procedures to check up on the tinnitus (luckily I have a few friendly research contacts who can help to make sure this is all done to best effect).

First step for me is to find out what our research questions are.

First research question (not short ), based on what we're discussing, is:

Tinnitus patients have been shown to have decreased grey matter in the ventromedial prefrontal cortex. Can training through body-based exercises build this region and reduce the impact of tinnitus?

Who knows, if we research a little more, maybe there are better and already researched things that have been shown to build the grey matter there?

I Started Pilates and Tai Chi in part because of their promises of improving attention and neuromuscular development (also, as I got hurt in the gym, I wouldn't go back to those loud classes). As far as I know if we all buy videogames and start playing everyday, our brains will change in a couple of weeks (search web for "Tetris Effect"). I really don't know if anyone can say with any degree of accuracy which part of the brain will change.

For me, it was good that those exercises put me in learning mode and gave me stuff to pay attention to. Maybe "Learn anything" is better than sit around listening to T.

 

[Steve]

As far as I know if we all buy videogames and start playing everyday, our brains will change in a couple of weeks (search web for "Tetris Effect"). I really don't know if anyone can say with any degree of accuracy which part of the brain will change.

The brain is in a constant state of change, I suppose the what we're thinking of here is trying to target these changes to a specific area.

I have been wondering if there is funding potential with this, if we can unearth enough evidence to make a study viable. What with the nature of tinnitus, I would prefer to see it as a multi pronged approach. Just one thing may help but it is unlikely to give a large benefit unless the overriding cause for the patient is this shrinkage.

As part of what we're doing here I would like to develop a questionnaire to understand tinnitus sub-types and get it validated. It won't be perfect and couldn't replace a thorough examination but we may be able to help each person understand a lot more about the causes and factors of their tinnitus. With that understanding they could then approach treatment in a far better way. It could potentially end up as a clinical trial tool.

 

[LeoE]

Looking forward to see next steps on how we can contribute

 

[geofftnt]

Great idea! Should it be called Join The Buzz?

I have several musician friends with tinnitus. Perhaps we could be proactive with educating musicians and fans about hearing damage!

 

[Steve]

Looking forward to see next steps on how we can contribute

I'm going to develop a few research questions, Markku will open a new forum area for it and we'll be up and running. @Cityjohn had some very good ideas on having a thread for theories also that we can contribute to so we'll have 2 labels I think - Research and Theory.

What we'll end up with is thread with discussion and then we'll update the first post as we develop things. We'll also use our "Team Research" forum for random chats in the background.

We are working on a brief for developing the forum, which will enhance the way things are presented. We've got a few ideas for that which will make navigating and understanding the content of longer threads way easier. It should help this project out too.

I have several musician friends with tinnitus. Perhaps we could be proactive with educating musicians and fans about hearing damage!

It's on a slightly different theme to this. Awareness is really important too though. There are some good campaigns like the BTA's Plugem, also many others.

 

[mandi]

I call it meditation or prayer, and I have found prayer very uplifting, hope-giving...replacing fear with faith. Being prayed for by others is also very encouraging. Not sure about improvement in the grey matter of the prefrontal cortex. There are claims of healing by being prayed for by healing evangelists...tinnitus too. I still believe in miracles. We need to keep it on the list of possible healing modalities.

Thanks for all these great ideas, @Steve ! I am definitely in on every one of them. Keep them coming. Let us know how we can help.