Activism NOW

Hello all,

I've been off and on this website the past couple of years since I developed tinnitus etc. from an acoustic trauma, and so I don't know it there is another thread with this discussion topic. Please bear with my lengthy post. I ask you to join me in revolution.

Let me share the origin of my injury and course of treatment, by way of introduction. I developed tinnitus at the tender age of 50 while at a very loud night club in New Orleans -- where I was only inside under 30 minutes. There was an "explosion" in my right ear and I have had bilateral tinnitus and hyperacusis ever since. I have completed the Am-101 trial with no success. I have had HBOT with no success. I have had a lidocaine injection to my 9th cranial nerve with moderate success. I'm about to have MVD. I take the usual meds prescribed for this condition. This is B***S***!

We have developed a great community (here and on other websites) for sharing stories, and medical information and research. More stories are in the news. BUT, do we need more of an activist dynamic much like those who fought for the rights of the disabled years ago???

In my experience, we are not truly been heard nor treated with sufficient regard. We need to make it crystal clear to physicians, researchers, and government: We are here. We want our hearing. We will be heard.

We don't care if this is a hard problem to solve. We don't care if there is supposedly not enough time and/or money to solve it now. We don't care our "invisible pain" isn't "scientifically verifiable" or is supposedly "psychological" in origin. Millions suffer, many more to come, and this issue needs to be made a PUBLIC PRIORITY. We need better recognition, accommodation and effective treatment. No one should have to quit their job over tinnitus!

Remember the stonewalling and shame associated with HIV, epilepsy, and other "difficult" problems to solve like PTSD? Let's make sure that we are not the victims of establishment politics, competing interests and apathy. Nuns on the Bus protest shareholder meetings to make sure corporate profits are spent wisely. Activists march against fracking and for DACA. The masses assemble to aid victims of hurricanes again and again.

Tinnitus is POLITICAL. Are we as VISIBLE as we need to be in order to be HEARD?

Fellow sufferers, I know many of us talk to concerned doctors and may even show up at a meeting or two. We may need to better organize to make this condition a medical priority.

Please identify any professional meetings tinnitus et al. activists might attend and note if you are willing to go and *boldly* speak up for our common plight. We need mass action and we need it now. We live every second in discomfort. Let us share the pain of our plight with those charged, by choice, to help us. Millions are affected. Lives and families are ruined. This. Must. Stop.

ACTIVISM, when engaged, persistent and informed, works. It's the only thing that ever has to foster significant social change.

Let's join together for the fight for our lives,
Grey Dawn

 

I tried telling them this, it did not get received well. I think one of the worst parts of having tinnitus isn't the sound itself but the fact the community seems to care about doing something about it as much as the ENTs we complain about.

 

Two small but easy things everyone on Tinnitus Talk with a Facebook account can do right now: "like" Hyperacusis Research and the American Tinnitus Association.

Even better, donate money and / or time. But the "likes" are a good and free place to start, they help demonstrate that people care.

https://www.facebook.com/hyperacusisresearch

https://www.facebook.com/American-Tinnitus-Association-1467283416697562

 

Well, let's ban together and try again. I have been a part of other activist groups that have had success. This is the "talk therapy" that some people need to cope. But it cannot be the end goal. We must push forward.

If you have liked my post, please share it with any likeminded. THE TIME TO ACT IS NOW. GD

 

If that's the case, why wouldn't people demand immortality? After all, when it comes to immortality, people don't really care that it is a hard problem to solve.

We can demand anything, but if it is a hard problem to solve, it is not looking very promising.

 

It is so low on the totem pole list due to brain and inner ear or inner ear and brain. I think when it was named tinnitus it makes it seem not so bad.

Also where do you start to get recognized because certainly I never heard it was that serious but it is. And it is massive.

The reason people don't post or say anything is fear factor and that is what tinnitus does to everybody.

Here's my own example: I only had tinnitus for two months now and I realize most people acquire tinnitus from loud noise, but at first thought it was dental, but later I realized it was from stress, anyway my husband was concerned so he came with me to doctor's appt.

I told the doctor I had low sound high sound and other sounds, but after a while my husband confessed he had tinnitus and has had it for years. He did tell me years ago but I thought it went away, I never thought about it, he told he just got used to it and dealt with it.

I ask him how did he get it and he said in his job, he was around loud noise for years. Believe it, both of us have it.

Again no real understanding of what sufferers have to deal with. And the tinnitus prevalence just keeps getting bigger across the globe. Yes people can adapt but it is no real answer.

Awareness has to happen, and doctors and politicians have to start putting the puzzle together.

 

So how do we unite and put pressure on the doctors and politicians to do something about it. We are strong in numbers but we need to figure this out together and do something about it.

 

We're very strong in numbers, but very weak in organization. If we were to do something like what you mentioned, it would be an end goal. It all starts with awareness.

 

I think MSN news could ask do you have tinnitus? Or what is tinnitus?

I also think doctors should put out awareness fliers stating do you know headphone use or being in loud places can cause ringing in the ear.

And it should start with pediatrician and regular check ups, doctors should explain early how to protect the ears and why.

Also explain extended stress and meds that cause ringing in the ears and that there is no cure and it is serious and not some small problem.

Doctors should also be on preventative side as well, not just after the fact when it's too late.

 

Clinical trials would be great if they kept to the basics. We all hear ringing in ear no matter how it appeared it either went thru brain to ear or ear to brain.

Neuroscience needs more action not a random theory and that is across all levels. We all receive no medical answers.

I think the shock of no answer is worse and it sends us all in a tailspin. I believe in awareness and more insight into the brain and ear.