Support vs. Telling the Truth

[jazz]

'in the end we will all be habituated and/or cured.' How do you know this?

@Boxdra I understand your pain and believe in your mission to be honest with tinnitus sufferers about the condition. Tinnitus sufferers deserve the truth, nothing less. But what is the truth regarding curative or ameliorative technologies? Please, consider the following:

Acute tinnitus is curable. Several companies are working on a solution, and within five-to-ten years the condition will be as treatable as a broken limb.

Chronic tinnitus may or may not be curable; but it will be manageable. How do I know? The research. Not only drug development, but the various electronic neuromodulation devices being developed and tested for several major brain disorders. Interest in brain modulation is great and the field is burgeoning. In five-to-ten years, many people will be getting brain tune-ups--not only to ameliorate illness, but also to promote health, e.g., memory enhancement.

We are on the eve of a revolution in neural devices both to treat and enhance our brain function. This year alone $17B globally will be spent on neuromodulation devices. Look at these excerpts describing the neuromodulation market:

Neuromodulation devices have emerged as one of the fastest growing segments of the medical device market due to high demand for minimally invasive and non–invasive treatment.

It consists of devices used to modulate or alter neurons by means of passing electric pulses through the nerves. Notable segments of the neuromodulation market are spinal cord stimulation, deep brain stimulation, and vagus nerve stimulation. Vagus nerve stimulation, being nascent in the market, will represent the maximum growth in the coming years fuelled by its wider scope of application and less invasive nature as compared to other SCS or DBS techniques. The spinal cord stimulation technique holds maximum share in the market, yet, it is observed to have a slower growth.

Research studies and clinical trials also show a promising future for DBS and transcranial magnetic stimulation market in new applications like Alzheimer's, drug resistant depression, tinnitus, etc. The key factors that drive the neuromodulation market are higher incidences of endemic diseases, rise in aging population, technological advancement, devices under approval, and presence of several niche players. Reimbursement in certain geographies and cost of devices are major challenges faced by this market. North America is estimated to account for the maximum share of the neuromodulation market in 2012, followed by Europe, and Asia-Pacific countries like Japan, India, and China.​

The market for treatment of tinnitus, in particular, represents an emerging application of neuromodulation. According to the American Tinnitus Association, about 50 million people currently (2012) suffer from this disease in the U.S. [emphasis added]​

And so I know all chronic tinnitus sufferers will be relieved of their noise--even if this relief is only habituation. I don't see this as a pipe dream. I see it as a pipeline for emerging tinnitus products.

The past is not always prologue to the future. The sometimes the past is just the past. I know the future of chronic sufferers will be a quiet one.


References:

http://www.marketsandmarkets.com/Market-Reports/neurostimulation-devices-market-921.html

http://www.marketsandmarkets.com/PressReleases/neurostimulation-devices.asp​

 

[Boxdra]

All your information is fine, but still its not what your saying. Your saying thats 'all' people will. But like I said, I know people who did not habituated, so saying that everyone will is false.

I don't know why you say you don't want to post here anymore, but thnx for posting.

 

[Martin69]

All are right to some extent.
Many have habituated and many cannot. IMHO it depends much on the frequency, although TRT teaches loudness and frequency plays no role.
I myself don't know if I will get used to this any time in the future.
It is really painful and scary.
I try to live my life day by day, surviving as good as possible.
And hopefully one day, T goes into the background as a neutral stimulus.
Regarding cures I am not that optimistic for meds acting on brain nerves... I don't know.
Of course I hope for the best.

 

[LadyDi]

An interesting discussion.

The original question was: "When is truth more important and when is positivity more important?" I agree with what many have said here already. My personal opinion in regards to this in the Support Forum, the place where newbies often first come:

Negativity usually isn't helpful. The Treatment Forum, for example, might be a different story, as in citing research that shows a treatment doesn't work. Although I am not sure if that is negative as much as true.

Lying or being unrealistic ("I know for sure your tinnitus is going to go away!") is not a good idea. Being hopeful but realistic ("Many people have habituated and this is something you can strive for, too.") is the better approach.

It's best to speak from your own experience when being supportive, unless you are citing research. In short: "Masking worked (or didn't work) for me but might be different for you." I don't think it is being negative to tell people what treatments or approaches failed for you, as long as everyone is clear there is no "one size fits all" with tinnitus.

And finally, as @SteveH said: It's tough to talk about "truth" regarding tinnitus when there is so much we don't know and every case is unique. I try to remember that I need to respect each person's experience and not judge it by my own experience.

 

[Tenna]

Very good question to be raised and many good answers provided.
Before making a contribution on a support board, people have to ask themselves whether they'll tell others
"Odds favor it will become a lot better for you" or "Here is one who killed herself because of t".
Both are truths, one fulfills the goal of a support board

 

[NeoM]

Truth about what? That some people kill themselves over it? Ok...and what percentage of people that have tinnitus do this? Because I usually only hear about the same four or five stories.

I recently read a story about a guy who was really into weightlifting but suffered a heart problem and killed himself because he couldn't do weightlifting anymore. However, I don't think anyone would blame weightlifting and instead say he was psychologically in the wrong place and that lead to his situation. The same principle applies to tinnitus.

 

[Grace]

@Boxdra I understand your pain and believe in your mission to be honest with tinnitus sufferers about the condition. Tinnitus sufferers deserve the truth, nothing less. But what is the truth regarding curative or ameliorative technologies? Please, consider the following:

Acute tinnitus is curable. Several companies are working on a solution, and within five-to-ten years the condition will be as treatable as a broken limb.

Chronic tinnitus may or may not be curable; but it will be manageable. How do I know? The research. Not only drug development, but the various electronic neuromodulation devices being developed and tested for several major brain disorders. Interest in brain modulation is great and the field is burgeoning. In five-to-ten years, many people will be getting brain tune-ups--not only to ameliorate illness, but also to promote health, e.g., memory enhancement.

We are on the eve of a revolution in neural devices both to treat and enhance our brain function. This year alone $17B globally will be spent on neuromodulation devices. Look at these excerpts describing the neuromodulation market:

Neuromodulation devices have emerged as one of the fastest growing segments of the medical device market due to high demand for minimally invasive and non–invasive treatment.

It consists of devices used to modulate or alter neurons by means of passing electric pulses through the nerves. Notable segments of the neuromodulation market are spinal cord stimulation, deep brain stimulation, and vagus nerve stimulation. Vagus nerve stimulation, being nascent in the market, will represent the maximum growth in the coming years fuelled by its wider scope of application and less invasive nature as compared to other SCS or DBS techniques. The spinal cord stimulation technique holds maximum share in the market, yet, it is observed to have a slower growth.

Research studies and clinical trials also show a promising future for DBS and transcranial magnetic stimulation market in new applications like Alzheimer's, drug resistant depression, tinnitus, etc. The key factors that drive the neuromodulation market are higher incidences of endemic diseases, rise in aging population, technological advancement, devices under approval, and presence of several niche players. Reimbursement in certain geographies and cost of devices are major challenges faced by this market. North America is estimated to account for the maximum share of the neuromodulation market in 2012, followed by Europe, and Asia-Pacific countries like Japan, India, and China.​

The market for treatment of tinnitus, in particular, represents an emerging application of neuromodulation. According to the American Tinnitus Association, about 50 million people currently (2012) suffer from this disease in the U.S. [emphasis added]​

And so I know all chronic tinnitus sufferers will be relieved of their noise--even if this relief is only habituation. I don't see this as a pipe dream. I see it as a pipeline for emerging tinnitus products.

The past is not always prologue to the future. The sometimes the past is just the past. I know the future of chronic sufferers will be a quiet one.


References:

http://www.marketsandmarkets.com/Market-Reports/neurostimulation-devices-market-921.html

http://www.marketsandmarkets.com/PressReleases/neurostimulation-devices.asp​

Chronic T is already manageable. Theres tons of habuitation therapys out already now. I just think from now on researchers should primarily focus on actually lowering the noise for chronics, rather then spending millions of dollars on another "habutation" device, that isnt much from the last ten, yet still promotes the same outcome which is habutation. And its great and the closest thing to quiet for some, but in reality the noise is just as loud as it was from day one. If chronic T isnt curable, then there should be no people out there experiencing lower volume with no explanation. Somethings goin on in our brains, and its gonna be hard but that should be researchers primary focus is actually "curing" the disease. Autifonys a great start.

 

[jazz]

I just think from now on researchers should primarily focus on actually lowering the noise for chronics

@Grace Let's first make sure that people who develop acute tinnitus will be cured or significantly improved. We need AM-101 to succeed. The same is true for Autifony's tinnitus drug. And, don't forget, once you have tinnitus you are more vulnerable to further ear damage. This means that all these acute treatments will prevent us chronics from becoming worse. This is very important.

Using myself as an example, I worry most about ototoxic antibiotics since I'm allergic to penicillin. In fact, the "mycins" and cipro are the main drugs I'm not allergic too. So obviously I worry about taking antibiotics. Likewise, platinum-based chemotherapy, i.e., cisplatin, is very ototoxic. What about people who develop cancer and must take cisplatin? It's not like you have a choice.

In addition, chronic tinnitus is more difficult to treat. Although many people don't believe this, I have never found anything to suggest otherwise. This doesn't mean chronic tinnitus can't be effectively treated; but it will be more difficult. That's why it's good for these drug companies to insure the best possible outcome for their clinical trials. You don't want a drug company to loose investor interest by failing to meet its treatment goals. The sad fact is many late stage clinical trials fail, and when that happens you risk the project being shelved--perhaps indefinitely. This article talks about some of the reasons for late-stage clinical trial failure. Of particular note are the following:

According to the publication FierceBiotech, the success rate of Phase II clinical trials has fallen 34 percent between 2003 and 2007 to 22 percent between 2007 and 2011.

These numbers stem from a study conducted by Bernstein Research. The statistics show that late-stage drug development is not going favorably for many pharmaceuticals.

So why are late phase trials failing?

...

[T]here may be a change in the benefit-risk ratio of a medication for a new patient population. Because Phase III trials utilize a more diverse group of subjects to test on, the risk of the drug may outweigh the benefits in the long run.

...

Some major reasons for the high failure rate include misleading or inaccurate information recorded in Phase II trials and ineffective programs that do not provide enough information for moving on to Phase III trials or designing an adequate subsequent experiment. Sometimes Phase II trials suffer because of shortened timelines before approval. Drug development regularly centers on Phase II programs for cutting down the timeline. Due to this, Phase II trials, at times, provide incomplete data or are improperly executed.

In addition, the size of patient populations in earlier trials are much smaller, which can cause safety signals to be missed and efficacy signals harder to replicate in larger samples.

The high rate of failure in these late phase trials is putting a strain on the pharmaceutical industry, which is causing costs to rise. If adequate information is gained for deciding whether to further certain research, it is possible to reduce these developmental costs.

Some solutions to these late-phase failures may include developing a clear view of what needs to be achieved in Phase III when designing the Phase II experimental trial, analyzing previous development and historical data of the test compound, and choosing an endpoint that is beneficial for both the medication tested and the clinical patient population.
​

So, while I want a cure for chronic tinnitus, it is best to get the current drugs approved for any type of tinnitus. In the pharmaceutical and biotech industry, success breeds more interest--which insures more funds in the investor pipeline for additional drug development.

As in life, nothing succeeds like success. That's why we need positive results from AM-101 and Autifony!

Reference:

http://www.aptivsolutions.com/blog/...14/02/why-do-late-phase-clinical-trials-fail/

 

[Grace]

@Grace Let's first make sure that people who develop acute tinnitus will be cured or significantly improved. We need AM-101 to succeed. The same is true for Autifony's tinnitus drug. And, don't forget, once you have tinnitus you are more vulnerable to further ear damage. This means that all these acute treatments will prevent us chronics from becoming worse. This is very important.

Using myself as an example, I worry most about ototoxic antibiotics since I'm allergic to penicillin. In fact, the "mycins" and cipro are the main drugs I'm not allergic too. So obviously I worry about taking antibiotics. Likewise, platinum-based chemotherapy, i.e., cisplatin, is very ototoxic. What about people who develop cancer and must take cisplatin? It's not like you have a choice.

In addition, chronic tinnitus is more difficult to treat. Although many people don't believe this, I have never found anything to suggest otherwise. This doesn't mean chronic tinnitus can't be effectively treated; but it will be more difficult. That's why it's good for these drug companies to insure the best possible outcome for their clinical trials. You don't want a drug company to loose investor interest by failing to meet its treatment goals. The sad fact is many late stage clinical trials fail, and when that happens you risk the project being shelved--perhaps indefinitely. This article talks about some of the reasons for late-stage clinical trial failure. Of particular note are the following:

According to the publication FierceBiotech, the success rate of Phase II clinical trials has fallen 34 percent between 2003 and 2007 to 22 percent between 2007 and 2011.

These numbers stem from a study conducted by Bernstein Research. The statistics show that late-stage drug development is not going favorably for many pharmaceuticals.

So why are late phase trials failing?

...

[T]here may be a change in the benefit-risk ratio of a medication for a new patient population. Because Phase III trials utilize a more diverse group of subjects to test on, the risk of the drug may outweigh the benefits in the long run.

...

Some major reasons for the high failure rate include misleading or inaccurate information recorded in Phase II trials and ineffective programs that do not provide enough information for moving on to Phase III trials or designing an adequate subsequent experiment. Sometimes Phase II trials suffer because of shortened timelines before approval. Drug development regularly centers on Phase II programs for cutting down the timeline. Due to this, Phase II trials, at times, provide incomplete data or are improperly executed.

In addition, the size of patient populations in earlier trials are much smaller, which can cause safety signals to be missed and efficacy signals harder to replicate in larger samples.

The high rate of failure in these late phase trials is putting a strain on the pharmaceutical industry, which is causing costs to rise. If adequate information is gained for deciding whether to further certain research, it is possible to reduce these developmental costs.

Some solutions to these late-phase failures may include developing a clear view of what needs to be achieved in Phase III when designing the Phase II experimental trial, analyzing previous development and historical data of the test compound, and choosing an endpoint that is beneficial for both the medication tested and the clinical patient population.
​

So, while I want a cure for chronic tinnitus, it is best to get the current drugs approved for any type of tinnitus. In the pharmaceutical and biotech industry, success breeds more interest--which insures more funds in the investor pipeline for additional drug development.

As in life, nothing succeeds like success. That's why we need positive results from AM-101 and Autifony!

Reference:

http://www.aptivsolutions.com/blog/...14/02/why-do-late-phase-clinical-trials-fail/

Yeah i forget that am101 could prevent us from getting worse.. Thats a great thing at least!!! I just hope once these drugs are out if they succed, that they dont forget about all us that have chronic T and continue to make drugs for us too.