Tinnitus Classification for the General Public

[Greg Sacramento]

My doctors tell me that I don't have much longer. It starts with my heart and atherosclerotics. I have a long list of physical problems. Peripheral artery disease is painful, but the pain in my mouth from cut nerves is out of this world. My jaw is falling apart. Now besides severe cervical/mandibular somatic tinnitus, I have loud PT thumping.

I come here to try to help others, but I can't help myself.
Peace to all if possible. Just as a friend.

 

[Ed209]

My doctors tell me that I don't have much longer. It starts with my heart and atherosclerotics. I have a long list of physical problems. Peripheral artery disease is painful, but the pain in my mouth from cut nerves is out of this world. My jaw is falling apart. Now besides severe cervical/mandibular somatic tinnitus, I have loud PT thumping.

I come here to try to help others, but I can't help myself.
Peace to all if possible. Just as a friend.

It's incredibly brave that you can think of others with all you are going through. What you describe sounds like hell on earth. Just awful.

Take it easy, Greg, and don't spend too much time helping others when you should be looking after yourself. A lot of the time these threads descend into arguments which honestly helps no one.

 

[Elfin]

Bless your heart, @Greg Sacramento

Your courage and generosity of spirit is inspirational. Thanks for all that you do for us and good luck and best wishes with all that you are facing!

 

[Elfin]

has driven other members out

By doing what exactly, being supportive in a support forum? Is there any proof that this has actually happened?

 

[Wolfears]

My doctors tell me that I don't have much longer. It starts with my heart and atherosclerotics. I have a long list of physical problems. Peripheral artery disease is painful, but the pain in my mouth from cut nerves is out of this world. My jaw is falling apart. Now besides severe cervical/mandibular somatic tinnitus, I have loud PT thumping.

I come here to try to help others, but I can't help myself.
Peace to all if possible. Just as a friend.

Reading your post is very heart breaking....yet you are still here helping others by providing all kinds of good information.
I hope, that you do find peace at last.

 

[Bam]

My doctors tell me that I don't have much longer. It starts with my heart and atherosclerotics. I have a long list of physical problems. Peripheral artery disease is painful, but the pain in my mouth from cut nerves is out of this world. My jaw is falling apart. Now besides severe cervical/mandibular somatic tinnitus, I have loud PT thumping.

I come here to try to help others, but I can't help myself.
Peace to all if possible. Just as a friend.

Greg you of all people know the bitter unfairness of kind peaceful loving folk seemingly hit the hardest with all manner of pain and suffering. I hope you find peace my friend....I hope we all do.

 

[3ri0w]

Good thread

 

[Jiri]

My doctors tell me that I don't have much longer. It starts with my heart and atherosclerotics. I have a long list of physical problems. Peripheral artery disease is painful, but the pain in my mouth from cut nerves is out of this world. My jaw is falling apart. Now besides severe cervical/mandibular somatic tinnitus, I have loud PT thumping.

I come here to try to help others, but I can't help myself.
Peace to all if possible. Just as a friend.

@Greg Sacramento you were amongst the very first people on this forum who tried to help me clarify the causes of my tinnitus and help me. Since then you provided a lot of valuable, scientific information to others on the board. Your health problems are very formidable yet you are here still helping others. My hat goes off to you and I hope you find peace and relieve. Thank you, my friend.

 

[Red]

My doctors tell me that I don't have much longer. It starts with my heart and atherosclerotics. I have a long list of physical problems. Peripheral artery disease is painful, but the pain in my mouth from cut nerves is out of this world. My jaw is falling apart. Now besides severe cervical/mandibular somatic tinnitus, I have loud PT thumping.

I come here to try to help others, but I can't help myself.
Peace to all if possible. Just as a friend.

Thank you for all your posts, Greg. I always look forward to reading when I see your them. There's always well written information in each or an interesting perspective.

I've heard often while reading that facial pain is the worst of it all. Mine can get very bad but I can manage my pain by not doing anything...fun or productive. I am sorry you've had to go through this. Like tinnitus, there are so many people who have to suffer with intense, torturous pain due to lack of medical advancements.

The fact that you still come on here and post despite intense tinnitus and pain is something I both admire and appreciate.

I'll be wishing you well even if the future seems bleak.

 

[emmalee]

I come here to try to help others, but I can't help myself.
Peace to all if possible. Just as a friend.

@Greg Sacramento

You help so many. Thank-you from the bottom of my heart for all that you contribute here.

You are a true friend to all of us.

 

[Wolfears]

I totally understand what you're saying and agree that medical professionals and the general public need to be aware that there are different intensity levels of tinnitus and that it is a serious condition. However, your guide is drastically simplifying what is an extremely complex condition, and it could never be used professionally.

Yes Ed, sorry for late reply, but this is exactly what I'm trying to do.
In order for someone on the outside to even begin to understand this condition, it HAS to be very much "drastically simplified".

Think of it as building a house.
Before you can build the walls and put on a roof, you need to create a foundation first.
Think of this as a foundation for someone who has either never heard of tinnitus, or thinks that it is "one size fits all" type of a deal.

Nobody will be diving into all the complexities straight off the bat...they can always do that later.
Simplicity is the key here...really.

As far as being "professional", I don't have much faith in any so called professionals to spread the message.

For example if the BTA or the ATA had their way with this scale, we would find out in a very uncertain terms that "sometimes tinnitus could get a little annoying" but it will be ok if we apply "mindfulness".

No Ed...I'm not interested in anyone to water it down with bunch mild weasel words.
I prefer to cut those kinds of people out of this altogether and stick to tinnitus boards, word of mouth and social medias outlets etc...
I would have no issues, if it was just called the underground or unofficial guide to Tinnitus.

 

[Jazzer]

@Greg Sacramento

My dear friend - you are a true gem in this place.
Your love and care, affection and friendship for me and others here, despite your noise your pain and your own worries, is truly incredible.
You were one of the first members I met.
You have truly helped me.
I love you like a brother.
I always will,
Dave x

 

[fishbone]

My doctors tell me that I don't have much longer. It starts with my heart and atherosclerotics. I have a long list of physical problems. Peripheral artery disease is painful, but the pain in my mouth from cut nerves is out of this world. My jaw is falling apart. Now besides severe cervical/mandibular somatic tinnitus, I have loud PT thumping.

I come here to try to help others, but I can't help myself.
Peace to all if possible. Just as a friend.

My dear friend, we somewhat mirror each other in our lives. I know just how much pain, you endure on a daily basis. I go through it as well. I always paid tons of attention to your posts, because you juggle multiple pains and noises at the same time. God has a plan for you and he loves you very much! I do not know what the doctors have said, but please try to be at peace with your self and your situation. I am always here for you if you need me.

Your post bothers me, because I was hoping that things would turn around for you.

You shall be in my prayers.

 

[Ed209]

No Ed...I'm not interested in anyone to water it down with bunch mild weasel words.
I prefer to cut those kinds of people out of this altogether and stick to tinnitus boards, word of mouth and social medias outlets etc...
I would have no issues, if it was just called the underground or unofficial guide to Tinnitus.

Tinnitus Hub/Talk are working on a guide already.

 

[Wolfears]

Tinnitus Hub/Talk are working on a guide already.

That is good news...are the Tinnitus Talk members allowed to make suggestions, or is it some kind of a behind the doors private project?

 

[Ed209]

That is good news...are the Tinnitus Talk members allowed to make suggestions, or is it some kind of a behind the doors private project?

https://www.tinnitustalk.com/threads/help-needed-for-tinnitus-guide-project.28817/

 

[Hazel]

That is good news...are the Tinnitus Talk members allowed to make suggestions, or is it some kind of a behind the doors private project?

It is actually a collaborative project with different members of the community co-writing on different chapters. It's a huge project, with lots of background research, editing, etc. Progress is frustratingly slow, because everyone is doing this in their free time next to full-time jobs, etc.

You can find more info about the project here.

 

[Wolfears]

It is actually a collaborative project with different members of the community co-writing on different chapters. It's a huge project, with lots of background research, editing, etc. Progress is frustratingly slow, because everyone is doing this in their free time next to full-time jobs, etc.

You can find more info about the project here.

I hope I'm wrong, but judging by your description it sounds like a very complicated lengthy write-up of sorts?

 

[Hazel]

I hope I'm wrong, but judging by your description it sounds like a very complicated lengthy write-up of sorts?

Not sure what you mean? What is your concern?

 

[Ed209]

I hope I'm wrong, but judging by your description it sounds like a very complicated lengthy write-up of sorts?

Tinnitus is a very complex condition. I don't think a couple of paragraphs really cuts it.

 

[Bam]

Not sure what you mean? What is your concern?

I think the concern is it will just be the same old same old NHS style tinnitus guide and won't actually hammer home to the average person why they should be extremely worried if they or someone they love gets hit by this. @Wolfears guide might appear dramatic to some but I think he's absolutely nailed what it is to have this affliction at the various levels. And the only way serious funding of a cure for this nightmare is going to happen is if people fear it, like they feared AIDS 30 years ago.

 

[Wolfears]

Not sure what you mean? What is your concern?

Well, if this is supposed to be some sort of a guide to tinnitus for average person out there (as I understand it), the fact that most people's attention span is about maxed out by reading a restaurant menu needs to be taken into consideration.

 

[Hazel]

I think the concern is it will just be the same old same old NHS style tinnitus guide and won't actually hammer home to the average person why they should be extremely worried if they or someone they love gets hit by this. @Wolfears guide might appear dramatic to some but I think he's absolutely nailed what it is to have this affliction at the various levels. And the only way serious funding of a cure for this nightmare is going to happen is if people fear it, like they feared AIDS 30 years ago.

The Guide is evidence-based, so it'll say whatever the science tells us, not repeating NHS or any other institution. Its aim is not to make people afraid. People can make up their own minds about whether to be afraid or not, based on the evidence.

If awareness raising is important to you, you could help us out with this project instead. In spite of all the people who love to complain on this forum that no one is taking the plight of tinnitus sufferers seriously, sadly when we ask those very same people to take action in a large collaborative campaign, and let their voices be heard, the response is .... zero.

 

[Wolfears]

I think the concern is it will just be the same old same old NHS style tinnitus guide and won't actually hammer home to the average person why they should be extremely worried if they or someone they love gets hit by this. @Wolfears guide might appear dramatic to some but I think he's absolutely nailed what it is to have this affliction at the various levels. And the only way serious funding of a cure for this nightmare is going to happen is if people fear it, like they feared AIDS 30 years ago.

Bingo...if the target demographic are mainly academics, whom don't mind reading some long 500 page essay along with all the sources, this is a great effort indeed.

But if the target is supposed to be the guy/girl next door...my common sense tells me it's not going to happen, even if it is the greatest guide on this planet.

A good salesmen needs to know whom he's trying to sell his product to and modify it accordingly.

This is not to be taken as criticism...I just hope these guys thought this through.

 

[Wolfears]

Its aim is not to make people afraid.

And RIGHT THERE is the reason why nobody will take tinnitus seriously.

Why would they?
"There's nothing to be afraid of".

What you are doing is putting yet another nail in the coffin of those, who are desperate for a cure.
Great job.

 

[Ed209]

I think the concern is it will just be the same old same old NHS style tinnitus guide and won't actually hammer home to the average person why they should be extremely worried if they or someone they love gets hit by this. @Wolfears guide might appear dramatic to some but I think he's absolutely nailed what it is to have this affliction at the various levels. And the only way serious funding of a cure for this nightmare is going to happen is if people fear it, like they feared AIDS 30 years ago.

Like I said earlier, if you sensationalise it (in either direction), it will serve no purpose and it will have no legitimacy. What's needed is honest, unbiased information, that is backed by evidence - not anecdotes or strong emotions.

The ultimate aim should be something that helps everyone.

 

[Hazel]

Bingo...if the target demographic are mainly academics, whom don't mind reading some long 500 page essay along with all the sources, this is a great effort indeed.

But if the target is supposed to be the guy/girl next door...my common sense tells me it's not going to happen, even if it is the greatest guide on this planet.

A good salesmen needs to know whom he's trying to sell his product to and modify it accordingly.

This is not to be taken as criticism...I just hope these guys thought this through.

Well of course we take it as criticism. You have seen exactly 0% of what we've written and yet you presume you already know everything that will be wrong with it!

It's so easy to criticise from the sidelines isn't it?

And you totally ignored my call to action above. See:

If awareness raising is important to you, you could help us out with this project instead. In spite of all the people who love to complain on this forum that no one is taking the plight of tinnitus sufferers seriously, sadly when we ask those very same people to take action in a large collaborative campaign, and let their voices be heard, the response is .... zero.

Again, if you want to raise awareness, let your voice be heard beyond this forum. That's what we're trying to facilitate for you, as part of a large professionally run campaign, but the response from this community has been pretty much zero. I guess complaining within this forum is just easier.

 

[Ed209]

Bingo...if the target demographic are mainly academics, whom don't mind reading some long 500 page essay along with all the sources, this is a great effort indeed.

But if the target is supposed to be the guy/girl next door...my common sense tells me it's not going to happen, even if it is the greatest guide on this planet.

A good salesmen needs to know whom he's trying to sell his product to and modify it accordingly.

This is not to be taken as criticism...I just hope these guys thought this through.

If I bought a book on tinnitus, for example, I would hope that there were more than two pages in it. I wouldn't find much use in a few unsubstantiated paragraphs if I'm being honest.

 

[Wolfears]

Well of course we take it as criticism. You have seen exactly 0% of what we've written and yet you presume you already know everything that will be wrong with it!

It's so easy to criticise from the sidelines isn't it?

And you totally ignored my call to action above. See:

Again, if you want to raise awareness, let your voice be heard beyond this forum. That's what we're trying to facilitate for you, as part of a large professionally run campaign, but the response from this community has been pretty much zero. I guess complaining within this forum is just easier.

After what you wrote about your aim being "not wanting to scare people", I want nothing to do with you or your projects.

If your aim is to delay the cure for as long as possible, then you are doing a great job...you don't need any help.
If I didn't know better, I would think you are on Jestraboff's payroll.

 

[Wolfears]

If I bought a book on tinnitus, for example, I would hope that there were more than two pages in it. I wouldn't find much use in a few unsubstantiated paragraphs if I'm being honest.

Yes but there is a huge difference there Ed...you are actually actively LOOKING for information on tinnitus.
Most average people are not...but they still might read my scale out of curiosity, because it is short and to the point.