Activism NOW

[Grey Dawn]

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

 

[threefirefour]

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.

 

[lymebite]

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

 

[Grey Dawn]

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

 

[Bill Bauer]

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.

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.

 

[MBH]

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.

 

[ChrisfromCanada]

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.

 

[threefirefour]

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.

 

[MBH]

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.

 

[Samir]

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.

Frankly though, I did get a number of warnings from people close to me about my headphone use. I'm not sure if hearing the same warning from medical professionals would have had any different effect on me. People just don't listen, especially not when they are young and dumb. It's up to the elders to take the lead and regulate if need be.

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

You are so right! I wish we had regular check ups here Sweden.

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.

I managed to get an appointment to the local healthcare center recently (it's no easy task here) regarding my muscle spasms, and the young "doctor" (trainee physician from a foreign country) prescribed me with some meds. I looked it up later on Google and found that it's ototoxic. She knew about my tinnitus by reading the medical records on the computer. I never took those meds. Thank God for Google! In fact, it was on a list made by the American Tinnitus Association.

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

It's called "health care", but in reality it is more like "sick care". We have some trial program for regular check ups in the Stockholm area right now. It's a pilot program, where they offer you free check ups every 10 years I think. They will be expanding it across the country and doing it long term so that they can better understand public health. Something they should have started with 100 years ago if you ask me.

It is a medical "practice" after all. They practice on the sick so that they may reveal something about the disease one day. My only wish is that someone would take me in to practice on. I would gladly participate in some clinical trials for tinnitus. But there is none in Sweden, nor in the Northern Europe.

 

[MBH]

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.

 

[Samir]

Clinical trials would be great if they kept to the basics.

I believe in awareness and more insight into the brain and ear.

So do I, but mere words won't do much. Unless we make up a plan and start taking action, putting those words to action.

I would only participate in basic clinical research, as to help the scientists understand the problem. I wouldn't subject myself to some experimental drug that may or may not work. So I'm talking brain scans, ear checks, hearing checks, balance checks, and all the other related checks that you can do and that can be of use to scientists in order to better understand this condition.

Neuroscience needs more action not a random theory and that is across all levels.

It's not entirely random theories. But they need to back those theories up with more research and more data. Which I am basically offering here, but no one is interested in taking up the offer.

Here in Sweden we have something called Hjärnfonden, literally the "brain fund". Which is even supported by princess Victoria. But on the list of diagnoses that they fund research on they have tinnitus in the "other diagnoses" category, as an aside or a parenthesis. I am a bit surprised that it even made it to the list actually. They have it listed next to Creutzfeldt-Jakobs disease and Sturge -Webers syndrome.

http://www.hjarnfonden.se/om-hjarnan/diagnoser/ovriga-diagnoser/

At least they have it on some kind of list or agenda. But I see no clinical trials for it. In fact, we don't even have a national register of clinical trials like you do in the US. Not to my knowledge at least. You have to look it up on third party websites that try to gather this information, or visit the websites of the relevant research centers to see what they are up to. So we are basically in the dark.

I know we have the Internet, and some of the best broadband infrastructures and IT experts in the world. But when you have some kind of disease and you are forced to pull all that information in manually, basically doing good old detective work, then it is like being in the dark. Thankfully there is a European site within the EU that tries to gather in all the clinical trials across Europe and put it up for public display. But that doesn't mean we should not have a national register of our own, and a dedicated website. I wish the lack of websites were just the only problem in healthcare in Sweden...