Awareness Idea for Patient Research: Join the Dots

[Zug]

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.

I think those are great ideias! May I suggest one more thing? I was just talking to somebody that there were a lot of things I wish I knew when I first got Tinnitus, but the information is thinly spread and even the best doctors leave a lot for us to find on our own. I think a "beginners best practices" or something like that could be done with some information and common questions on this forum. For instance: When and how to protect your ears? How to choose an earplug? What to expect from different professionals such as ENT's, therapists, etc. Common doubts about habituation.

I remembering reading a text from you about the kind of music you play now. Those kind of things... I think that some people who have written success stories and are still around to help newbies would be great resources.

 

[Ears Hurt]

Yes, please let us know how we can help!

 

[Steve]

I think those are great ideias! May I suggest one more thing? I was just talking to somebody that there were a lot of things I wish I knew when I first got Tinnitus, but the information is thinly spread and even the best doctors leave a lot for us to find on our own. I think a "beginners best practices" or something like that could be done with some information and common questions on this forum. For instance: When and how to protect your ears? How to choose an earplug? What to expect from different professionals such as ENT's, therapists, etc. Common doubts about habituation.

I remembering reading a text from you about the kind of music you play now. Those kind of things... I think that some people who have written success stories and are still around to help newbies would be great resources.

Good idea.

We have our help guide but it's not quite so comprehensive as you describe. I was talking about a "tinnitus survival guide" recently but as Markku pointed out, that is a bit long as a title.

The BTA have collaborated on a site that will launch soon, a first aid kit for tinnitus. We want to be sure we don't replicate the resource but that whatever we do to expand our guide it can sit alongside it and reference the site (it is due for launch in around 2-3 months).

I think this will be an excellent project, we can have the guide and ask for help from everyone to build it further, find out what things were important to them. It maybe isn't in the same field as the research questions I had in mind but we could have: What information do patients need to see when they are first searching for help and advice?

 

[ryant]

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!

I agree 100%. Also, education for those who attend concerts. Many of us on this forum have tinnitus from not wearing hearing protection at a concert. All it takes is one show that is too loud. I didn't know much about tinnitus before I had it. Certainly didn't know it could be permanent or that it's not curable.

I'm surprised the government hasn't done more to educate people. Tinnitus is the most common causes of disability among both veteran and active-duty service members. And it affects something like 1 in 10 people in the general public.

 

[tomm]

I initially collected a list of everything that had even the slightest whiff of being able to help:

https://github.com/aioue/tinnitus-treatments/blob/master/to-be-sorted.md

I attempted to start putting it into a mindmap and it's now left unfinished.

https://github.com/aioue/tinnitus-treatments/blob/master/full-render.png

Both are all yours.

 

[bill 112]

I've just started LLLT and I'm starting Chi-Kung in June and I'm currently keeping a journal for each treatment to mark any improvements.If there's anyway I can help please PM me.

 

[monacco]

I initially collected a list of everything that had even the slightest whiff of being able to help:

https://github.com/aioue/tinnitus-treatments/blob/master/to-be-sorted.md

I attempted to start putting it into a mindmap and it's now left unfinished.

https://github.com/aioue/tinnitus-treatments/blob/master/full-render.png

Both are all yours.

Great work.

 

[Steve]

I initially collected a list of everything that had even the slightest whiff of being able to help:

https://github.com/aioue/tinnitus-treatments/blob/master/to-be-sorted.md

I attempted to start putting it into a mindmap and it's now left unfinished.

https://github.com/aioue/tinnitus-treatments/blob/master/full-render.png

Both are all yours.

Awesome thanks! This is pretty cool and may be something we can expand on.

Interesting amount collected on Neurotrophic. At TRI 16 there was a talk on the synaptic loss caused by noise exposure, the theory was that neurotrophins would be the answer to regenerating.

 

[Zug]

Good idea.

We have our help guide but it's not quite so comprehensive as you describe. I was talking about a "tinnitus survival guide" recently but as Markku pointed out, that is a bit long as a title.

The BTA have collaborated on a site that will launch soon, a first aid kit for tinnitus. We want to be sure we don't replicate the resource but that whatever we do to expand our guide it can sit alongside it and reference the site (it is due for launch in around 2-3 months).

I think this will be an excellent project, we can have the guide and ask for help from everyone to build it further, find out what things were important to them. It maybe isn't in the same field as the research questions I had in mind but we could have: What information do patients need to see when they are first searching for help and advice?

Yeah, since we're starting crowdsourcing ideas, why not crowdsource the guide? Some people here are really good with the advice they give, why not try to bring some of it together on a "Tinnitus for Dummies"? (I agree with Markku that a good name can go a long way.)

It would be a third initiative, separated from the research part but maybe it could turn out to be very useful to the Tinnitus community.

In time those things could cross-pollinate, for instance, when talking about what to expect from treatments we can use the data gathered on that last Poll when thousands of people answered what they have tried, for how long and what results they got.

 

[mandi]

Actually Christian meditation would mainly be meditating on God's Word, the Bible. Mixed with prayer to Jesus
(or God the Father, or the Holy Spirit, which are all one, the Trinity).
I focus lately on the Bible verses that speak of God's promises for healing, wholeness, health...and I claim
them, in Jesus' Name.

 

[squeek]

Thanks for making this Steve. It's going to be a massive undertaking and it will be a great tool. I hope everyone contributes. At the moment the internet is a gelatinous mess of poorly curated information.

Can you add "nervous system" as a top level dot?

 

[Steve]

why not try to bring some of it together on a "Tinnitus for Dummies"? (I agree with Markku that a good name can go a long way.)

We checked that out and it's actually trademarked, can't call anything "for dummies".

Definitely a good idea to crowd-source the things for the guide, I can see it expanding really nicely as a source of advice over time.

I've been thinking about an exercise guide recently, something from our collective personal experience. Exercise can be very beneficial anyway and is linked to increased Serotonin production, which is hypothesised as a tinnitus modulator. This recent study http://www.ncbi.nlm.nih.gov/pubmed/25906172 used a questionnaire base and found that better quality of life, associated with exercise, correlated with reduced tinnitus severity. It would be nice if we could take this to the next level: Develop a regime based on the exercise we all feel most comfortable with, get a test group together and monitor their tinnitus at stages. Fits in with some of the things in this thread already around Yoga and Tai Chi.

 

[suze]

Sounds to me like some basic research and satistics tactics would be helpful here. ie start with: a hypothesis, a method, a way to collect data, a way to analyze the data, start and end dates etc...otherwise it's all anecdotal. I would like to participate if it comes together. Seems like you already have a hypothesis and several possible methods. We can't disect our brains or draw GABA levels at the end but we could use the Tinnitus evaluation scale the docs use. Survey Monkey is easy to use. It collects data and would show how many subjects, compliance, etc. Then, if you wanted researchers to take notice of the data, you do the math and get a probability number. Thanks

 

[suze]

Back to the dots.......It would be hard to bring together group data. Easier yet, would be to individually use the Tinnitus Handicap Inventory. It is accepted by reseachers and easy to score (see Florian Zeman, a statstics and probability expert or a simple example in the 'ArchesTinnitusFormula' library. Each person takes the inventory before and after the intervention of their choice to see if it made a statistically significant difference as evidenced by a change in score of >7. Then report back to their chosen dot group. I don't know how to add a link to show the scale and the outcome scoring, but maybe someone else does?

 

[suze]

I like your question (hypothesis) and the way you phrased it. Because outcomes need to be measurable maybe add something like 'as measured by pre and post Tinnitus Handicap Inventory score change of > 7 ?

 

[Steve]

Thanks for making this Steve. It's going to be a massive undertaking and it will be a great tool. I hope everyone contributes. At the moment the internet is a gelatinous mess of poorly curated information.

Can you add "nervous system" as a top level dot?

Yes, that's a good point, CNS may be considered within the psychological but it does feel like a separate item too.

I like your question (hypothesis) and the way you phrased it. Because outcomes need to be measurable maybe add something like 'as measured by pre and post Tinnitus Handicap Inventory score change of > 7 ?

Not sure if you've seen it but Kathryn Fackrell did some very recent research on what should be considered a statistically significant score, this was my summary from her talk at TRI 16:

Erwin George measured an improvement of 9.6 points from intervention alone on the Tinnitus Questionnaire (TQ). Kathryn Facknell has some good work validating the tinnitus questionnaires; because of natural variations she recommended that a difference of 18 points in the TFI (also THQ and THI) could be the mark where a treatment is considered effective. Her work is incredibly useful and will hopefully be taken up as a standard.

Back to the dots.......It would be hard to bring together group data. Easier yet, would be to individually use the Tinnitus Handicap Inventory. It is accepted by reseachers and easy to score (see Florian Zeman, a statstics and probability expert or a simple example in the 'ArchesTinnitusFormula' library. Each person takes the inventory before and after the intervention of their choice to see if it made a statistically significant difference as evidenced by a change in score of >7. Then report back to their chosen dot group. I don't know how to add a link to show the scale and the outcome scoring, but maybe someone else does?

We can link into it from whatever project we're working on, work out what the best measurement times are and ping people to complete it. Probably set it up in Survey Monkey like you suggested. It's the norm to use a selection of questionnaires too. It's very boring to have to fill them all in and I always feel that the patient will just write anything after the first couple to get it over with. I did have a chat with Kathryn about this, we can ask for her expert feedback on how to do it the best way before we start.

 

[Path Maker]

@Steve I had saved this to my computer as a copy/paste, so I don't have the link, and therefore sorry that it is so long here. Please feel free to compress this however you wish. I think it's so important. The entire article is written with regard to the idea that researchers could approach tinnitus from non-USUAL viewpoints!

 

[Steve]

@Steve I had saved this to my computer as a copy/paste, so I don't have the link, and therefore sorry that it is so long here. Please feel free to compress this however you wish. I think it's so important. The entire article is written with regard to the idea that researchers could approach tinnitus from non-USUAL viewpoints!

Excellent. I've got it open for a read first thing tomorrow (evening here and my brain is a little fried).

We're working up a format for the JtD section so hopefully will have it up very soon and get things going.

 

[Starthrower]

"This recent study http://www.ncbi.nlm.nih.gov/pubmed/25906172 used a questionnaire base and found that better quality of life, associated with exercise, correlated with reduced tinnitus severity. It would be nice if we could take this to the next level: Develop a regime based on the exercise we all feel most comfortable with, get a test group together and monitor their tinnitus at stages. Fits in with some of the things in this thread already around Yoga and Tai Chi."

So sorry I cannot seem to figure out quote yet...

I am a runner, six miles a day, and find this is my best therapy for my tinnitus. Of course in the first year I could not leave my house. I could not drive. Life consisted of living inside usually sitting in a ball rocking back and forth. It took a lot of time for me to get where I am today.

Exercise of some sort is one of the best solutions. It would be interesting to read the new tinnitus people's accounts as they go through the stages of recovery. I would have to think back and go to some of my journals to recall my experiences.

 

[Steve]

I am a runner, six miles a day, and find this is my best therapy for my tinnitus. Of course in the first year I could not leave my house. I could not drive. Life consisted of living inside usually sitting in a ball rocking back and forth. It took a lot of time for me to get where I am today.

Exercise of some sort is one of the best solutions. It would be interesting to read the new tinnitus people's accounts as they go through the stages of recovery. I would have to think back and go to some of my journals to recall my experiences.

It feels a lot like taking the focus away with some form of exercise that either requires deep concentration or puts you into a certain place (as running can do when you get into the zone) is helpful.

Exercise of some sort is one of the best solutions. It would be interesting to read the new tinnitus people's accounts as they go through the stages of recovery. I would have to think back and go to some of my journals to recall my experiences.

Yes I would like to see that too. We're going to collaborating on expanding our "Don't Panic" guide for newbies (also long-termer of course) soon. One of the chapters I have a title for is exercise and nutrition, I want to give examples of others who have improved with exercise, what it was and how it helped.

We're looking at forms too, where we can ask people to fill them in when they join and then something like every month after. Along the lines of the THI/ THQ. It will be interesting if we can see what people have been doing and how / if they improve over time.

 

[Steve]

I think those are great ideias! May I suggest one more thing? I was just talking to somebody that there were a lot of things I wish I knew when I first got Tinnitus, but the information is thinly spread and even the best doctors leave a lot for us to find on our own. I think a "beginners best practices" or something like that could be done with some information and common questions on this forum. For instance: When and how to protect your ears? How to choose an earplug? What to expect from different professionals such as ENT's, therapists, etc. Common doubts about habituation.

I remembering reading a text from you about the kind of music you play now. Those kind of things... I think that some people who have written success stories and are still around to help newbies would be great resources.

This is now implemented. Great idea.

Thanks to a bit of behind the scenes work from @Markku we have a new section under knowledge base called "collaboration" where we have pasted the old parts from our guide and set out some new chapters.

It's open for comments and input from everyone, we will build it up as people give us their insight. Should turn into something really nice.

Collaboration Space

 

[Kathi]

May be off topic but as a newbie years ago, I did a lot of research and all I wanted was a cure--that does not exist for me. Maybe pointing out a dot that is snake oil would be beneficial?

Personally, after my mri and all the follow up hearing tests, I think my tinnitus is age related hearing loss with the cumulative effect of listening to very loud music as a younger person (I used to wear earphones and blast the reel to reel tapes of psychedelic music). I also believe that it is more than injured hair cells--I think it's a problem in the brain and auditory system. I do not think there will be a cure in my lifetime as so many people spontaneously habituate that big pharma doesn't want to invest. Maybe the situation with American Vets will change that.

How can I help?

 

[Steve]

May be off topic but as a newbie years ago, I did a lot of research and all I wanted was a cure--that does not exist for me. Maybe pointing out a dot that is snake oil would be beneficial?

Personally, after my mri and all the follow up hearing tests, I think my tinnitus is age related hearing loss with the cumulative effect of listening to very loud music as a younger person (I used to wear earphones and blast the reel to reel tapes of psychedelic music). I also believe that it is more than injured hair cells--I think it's a problem in the brain and auditory system. I do not think there will be a cure in my lifetime as so many people spontaneously habituate that big pharma doesn't want to invest. Maybe the situation with American Vets will change that.

How can I help?

Head over here Collaboration Space

We separated off the guide after Zug mentioned it. The things that aren't theory or research will be in our guide which, when it's finished, will make a nice helpful eBook.

Have a look at the chapters and the (small amount of) content in the guide already and then give us comments and suggestions based on your experience.

Thanks for offering to help out

 

[Kathi]

okay @Steve --I'll read it over and comment. Thanks for caring so much to do this!

 

[Zug]

Head over here Collaboration Space

We separated off the guide after Zug mentioned it. The things that aren't theory or research will be in our guide which, when it's finished, will make a nice helpful eBook.

Have a look at the chapters and the (small amount of) content in the guide already and then give us comments and suggestions based on your experience.

Thanks for offering to help out

Great news! I hope people buy the idea and pitch in.

Best,
Zug