My Posting Place

[Manny]

Who else killed way too many shinies because you didn't know what they were at the time?
I just have dim memories of a wild Pokemon looking "odd" once every blue moon.
Ah to be young and clueless.

 

[Samantha R]

Actually, I found Tinnitus Sufferers not to be so bad as long as what I post is not asking for donations. And, Tinnitus Sufferers, the largest of the groups is very tightly moderated for that. It's something you agree to when you sign up. Of course, I didn't pay attention to that and posted Danny's fund and Rauscheckers fundraiser there.

I wonder what the reasoning is that they don't allow donations? I know people in that group want the latest updates in terms of research and advancements in treatments.... There's over 20,000 members in the group, and if the Admin is serious about helping the members, then shouldn't they include information for them to contribute.

 

[JohnAdams]

From the Tinnitus Sufferer's Facebook page header:
"It is sometimes referred to as "the club disease" as many people get temporary tinnitus at loud clubs or concerts."

Sometimes like right there? I've been reading research papers, news, and this forum etc pretty obsessively for about 8 months and I've never heard tinnitus referred to as "the club disease".
Even I have been a vocal critic of Dr. Rauschecker's approach but why would they delete that podcast? His opinion deserves to be heard. That is just outlandish.

 

[JohnAdams]

Samantha Baines.....
smh......

this perfect explains the mentality of the BTA. they are brainless.

LOOK AT US!!! WE'rE hELpiNG!!!!!!!!!

 

[Contrast]

Luan's a better comedian anyway

 

[Manny]

Why did I post it twice?

Once for each ear.

 

[JohnAdams]

I'm cheif science officer. Weeeeeee!

 

[Jazzer]

Once for each ear.

Do try not to be silly Manny,
I know it's difficult.......x

 

[JohnAdams]

Do try not to be silly Manny,
I know it's difficult.......x

What? Why?

 

[annV]

@JohnAdams I'm on your side

 

[Jazzer]

What? Why?

I don't answer trick questions
- you know that.......x

 

[SugarMagnolia]

Why did I post it twice?

I read it twice and still only half understand it.

 

[SugarMagnolia]

From the Tinnitus Sufferer's Facebook page header:
"It is sometimes referred to as "the club disease" as many people get temporary tinnitus at loud clubs or concerts."

Sometimes like right there? I've been reading research papers, news, and this forum etc pretty obsessively for about 8 months and I've never heard tinnitus referred to as "the club disease".
Even I have been a vocal critic of Dr. Rauschecker's approach but why would they delete that podcast? His opinion deserves to be heard. That is just outlandish.

Sounds like victim-blaming. If you assume people got tinnitus from being careless with their ears, you don't have to feel sorry for them.

 

[OnceUponaTime]

That's funny. I guess everyone that got kicked off the other group for saying Thank God came over to your group!

Thank GOD that doesn't happened in this group! bahahaha
For the many times I have mentioned my God and my faith here and you all know me now...and accept me. Love to you all.
Once!

 

[JohnAdams]

Sounds like victim-blaming. If you assume people got tinnitus from being careless with their ears, you don't have to feel sorry for them.

Damn I didnt think about that but you're right.

 

[JohnAdams]

I've been in the Republic of Korea for the last two weeks getting stem cell and PRP injections in my ears almost every day.

 

[Contrast]

I've been in the Republic of Korea for the last two weeks getting stem cell and PRP injections in my ears almost every day.

check his ip and it will be coming from Korea.

 

[Ed209]

I wonder what the reasoning is that they don't allow donations? I know people in that group want the latest updates in terms of research and advancements in treatments.... There's over 20,000 members in the group, and if the Admin is serious about helping the members, then shouldn't they include information for them to contribute.

I left after a whole day of being on there. My very first post got locked so I saw no point in being a member anymore. It's tragically pathetic.

This is the thread that was locked to give you an idea:

Apparently, this is unacceptable behaviour, and yet I didn't break any of their rules. I was very careful not to.

In fact, the only rule that's arguably been broken is rule 6, and that would be by them (their admins). I didn't feel any kindness whatsoever. They are obviously going after rule 4 against me, but where did I directly ask for donations? I didn't post a fundraiser either. I gave a call to action for the community to help themselves. That's all I did.

These are the rules:

 

[Ed209]

I would go further and say that that support group (Tinnitus Sufferers) is actually hindering meaningful progress by blocking posts like the one I made. It's as if they will do anything they can to stop money going towards tinnitus research, and by also discouraging anything that empowers people to act and take a stand.

Now imagine a cancer board saying they disapprove of anyone trying to raise money for the cause (research) and that they will ban people if they try! No more walking for cancer or pink ribbons. How dare people try and help find a treatment!

Most tinnitus message boards/forums seem to only want a load of people feeding off each other's misery. And as we know, misery loves company. On top of all this, nobody shares information or projects that are to the benefit of all sufferers; it's completely fragmented out there and any kind of unity or cohesion looks like a pipe dream right now.

 

[Sam Bridge]

I have posted news about neuromod in a couple of UK Tinnitus groups and it only receives a couple of likes. Seems everyone in there takes their GP's words as gospel. "NOTHING CAN BE DONE EVER THERE IS NO CURE AND THERE NEVER WILL BE!"

 

[Manny]

My life is shot + sh!t!!!!

 

[JohnAdams]

My right ear tinnitus is almost complety gone. I have to plug it just to hear it. That includes both tones, medium and high hiss.


Left ear is a little better than before, but I still have 2-3 months of recovery.

 

[Contrast]

My right ear tinnitus is almost complety gone. I have to plug it just to hear it. That includes both tones, medium and high hiss.


Left ear is a little better than before, but I still have 2-3 months of recovery.

are you serious? what about noise induced pain?


you need to document your experience!

 

[JohnAdams]

are you serious? what about noise induced pain?


you need to document your experience!

I have completely documented it. I have pictures of my eardrums from everyday of treatment and I also have multiple audiograms. I also kept a concise journal of my entire trip. I'm going to wait 2-3 months and go to an audiologist in America and check my hearing again and post everything.

 

[Contrast]

I have completely documented it. I have multiple audiograms. I'm going to wait 2-3 months and go to an audiologist in America and check my hearing again and post everything.

speech in noise test.


Why didn't you tell me you were in Korea until yesterday?

 

[JohnAdams]

Why didn't you tell me you were in Korea until yesterday?

I was waiting until I finished to tell the forum.

Any questions about the clinic, or the treatment? Or Korea?

 

[Contrast]

Any questions about the clinic, or the treatment?

take picture on your phone.

 

[JohnAdams]

take picture on your phone.

Picture of what?

 

[Contrast]

Picture of what?

something to verify you are in South Korea.

 

[Markku]

I was waiting until I finished to tell the forum.

Do I have your permission to publicly state your country of location where your IP is located at the moment?