When Money Is No Object

[gary]

Most people in this group are aware that these celebrities have tinnitus:

1. Phil Collins
2. Eric Clapton
3. Peter Stringfellow
4. William Shatner
5. Pete Townshend
   
6. Lemmy Kilmister
7. David Letterman
8. Sylvester Stallone
9. Barbara Streisand

In the case of most of these celebrities, money is no object for tinnitus help. I wonder what types of treatment they are using/getting/taking when cost is not an issue?
​

 

[BOB3000]

Its funny when I read this sort of things. That people with large bankaccounts should/would spend alot of dollars on research and/or treatment. If we only talk about people who have severe tinnitus, if we all donated like 20$. Then the research would get an insane amount of money. But thats not the case. Becouse people always seem to think that "other people" should do it, people who are "rich". But if you cant spend 20$ on the think that "ruins" your life. Well then you are really poor. Maybee im a bit offtopic here.

 

[Karl]

...I wonder what types of treatment they are using/getting/taking when cost is not an issue?

​

I know that William Shatner uses maskers. He is a great advocate for the ATA. I read Shatner's book "Up Till Now", which may be one of the funniest books I have ever read. I recall a tragic story he told in the book about a tinnitus sufferer, and Shatner's inspirational words about tinnitus: "Trust me. It does get better." What a great guy Shatner is!

Some of these celebrities may not have very severe tinnitus. However, I have read that Pete Townsend has a very bad case. In the Who's early days, they would listen to studio tapes at full blast on headphones. (Reminds me of Neil Young singing, "Hey, hey, my, my,...It's better to burn out..." Oh, yeah?)

I've read that Steve Martin has tinnitus. He says it's no big deal, and what choice does he have? Garrison Kealer (NPR's "Prairie Home Companion") has it too, but he deals with it.

Even if someone has the financial resources, they may not be actively pursuing new treatments which are becoming available lately. At this point in time, these new treatments are just "blips on the screen" .

I hope that these imerging treatments that are "blips on the screen" become routine procedures in a few years.

 

[erik]

They may all have tinnitus and with the exception of Shatner and Townsend, maybe it isn't bad enough to be an issue and/or they aren't really bothered by it. I know 5-6 people at my work who have long-term chronic T and none of them seem to be bothered by it when I speak to them. They all say it was tough in the beginning and you get used to it. I think the stats are only 1% of tinnitus sufferers are severely impaired by T in some way or another.

 

[Karl]

erik -
The only people I know with T are in a tinnitus discussion group.

The worst thing about this condition is the very beginning. There is an adjustment period.

 

[erik]

Yes, the constant I hear everywhere is "time". Time seems to trump anything else at this point. I can attest that in my 4 months with T, it is 100% better now that it was in months 1 & 2 especially. It still annoys me but I can at least now sleep and function at work and in life. I can actually ignore it part of the day too on most days except those very loud ones.

 

[Shay O'Connor]

chris martin has pretty bad tinnitus and a net worth of US 120 m..hmm could 3m crack it folks?

 

[gary]

Some interesting replies. Yes Bob you are correct in that $20+ is a very small price to pay for research. I am not implying that "other people should do it" We all should contribute..

 

[Markku]

I know 5-6 people at my work who have long-term chronic T and none of them seem to be bothered by it when I speak to them. They all say it was tough in the beginning and you get used to it. I think the stats are only 1% of tinnitus sufferers are severely impaired by T in some way or another.

The worst thing about this condition is the very beginning. There is an adjustment period.

Absolutely fabulous quotes. Quoted for truth.

 

[Markku]

chris martin has pretty bad tinnitus and a net worth of US 120 m..hmm could 3m crack it folks?

3m would be ten times what ATA has available to give to research each year.

It would create a lot more opportunities for cracking this thing than what is currently available.

I do wonder though why the US govt isn't giving more to tinnitus research? Does anyone know how much they have allotted for each year?

If the tinnitus amongst the veterans is that common, then wouldn't that entice the government to give some money to research?

I don't have any data on this, but if tinnitus is really only debilitating for 1% of the veterans who experience tinnitus, then maybe that amount just isn't high enough to warrant more money to the research by the US. Did I answer my own question? I don't know.

Here's the truth, though, as been discussed here before:

Most of you who are currently really badly fighting the tinnitus and many of you whom think that tinnitus has ruined your life forever, will eventually settle with it, even if it doesn't go away.

The start is the worst. Then after a few months the situation improves noticeably. Habituation, whatever you call it.

Most struck with tinnitus go to that improved category within a year. They can hear the tinnitus at least under some circumstances, but it doesn't control their life and their quality of life has improved almost back to the original level pre-tinnitus. (Thinking here myself, if my QOL was 10 pre-tinnitus, it was probably 2-4 for a few months after onset, and then slowly came back to about 8-9).

Of course when anyone gets hit with tinnitus first, most (?) of them are quite affected by it for some time after onset. Understandable. The thought of endless ringing. It really is crippling in the beginning.

But brain adjusts in many cases. I don't know what are the mechanisms behind the super-debilitating tinnitus (many reference that it's 1% of all tinnitus sufferers?), but that one sounds bad. I don't know... it's really hard to objectively think of tinnitus, as it's such a subjective experience. One's debilitating tinnitus can be other's average one. Depending of course on the volume but also the type (tonal, crickets, humming, pulsating, etc...)

Anyway.

All this ties in the end to that maybe most of those celebrities have also adjusted to their tinnitus, habituated, and haven't considered it worth it to donate money to tinnitus research. Maybe some of them at least have though, many people donate anonymously. Although, if ATA received a $3mil anonymous donation, they'd certainly jump through the roof and would announce it all over the media.

And if most veterans are coping with tinnitus after a year of onset, then maybe the Gov't doesn't consider it to be that bad. Sigh. And no money from there.

If there are about 23 million tinnitus sufferers in the US alone, if 1% of those are those with debilitating tinnitus, that's 230,000 people with serious, debilitating tinnitus in the US.

If each of those in the 1% category donated $10, that would be $2.3mil. $5... $1.15mil.

The math is there I think, but the donations are very few and far between.

If it was possible to transmit a brain-signal, radio-type thing to every person with tinnitus in the US (and the whole world... whew...) and explain to them why they should donate a little bit of money to an organization like ATA, that'd be awesome.

The problem is also that many tend to think too narrowly. "I could give $10, but what difference would that make?". There are too few people who see the big picture and what forms of those smaller donations in the grand picture.

Let's get serious though.

Even if only 230k (the 1%) were seriously debilitated by tinnitus in the US, that's a lot more worldwide, and also I bet many, many, countless, countless people would be giving a lot for silence again, even from the 99% group.

I at least would. I said I'm now back at 8-9 most days (10 being the pre-tinnitus), and thank goodness my tinnitus is quite stable, it doesn't change a lot, but it does annoy me for a short while when trying to get sleep, or in quieter surroundings. I'd love to be able to be in silence, in my own thoughts, without the noises.

If every fifth tinnitus sufferer gave only $2 worldwide, I can't even sum up what that would make. Tons and tons.

But reaching out to everybody, explaining it, convincing them that the small donations aren't useless..

The psychology of donating seems mysterious just like tinnitus itself.


Of course if money is no object to a single person, they can possibly have almost all cutting-edge treatments available (even something basic like Neuromonics is so expensive that not all regular joes can get it even if wanted). They can see all the best tinnitus doctors around the world if they so wish. Have all the expensive imagining tests etc.


I don't think money can buy silence yet though (no secret cures for the super rich..). But there's more to try if you have lots of it, of course.

 

[Fish]

This is just my opinion, don't we put too much faith in ATA? They are pretty small and underfunded. They work to raise awareness about T, it's a good thing. But I personally wouldn't expect a "cure" coming from them.

From what I see a large majority of researched treatments is backed up by private companies like Auris Medical etc.

 

[DezDog]

Most people in this group are aware that these celebrities have tinnitus:

1. Phil Collins
2. Eric Clapton
3. Peter Stringfellow
4. William Shatner
5. Pete Townshend
6. Lemmy Kilmister
7. David Letterman
8. Sylvester Stallone
9. Barbara Streisand

In the case of most of these celebrities, money is no object for tinnitus help. I wonder what types of treatment they are using/getting/taking when cost is not an issue?

Also (and unsurprisingly), Lars Ulrich and James Hetfield from Metallica.

 

[Karl]

Here's the truth, though, as been discussed here before:

Most of you who are currently really badly fighting the tinnitus and many of you whom think that tinnitus has ruined your life forever, will eventually settle with it, even if it doesn't go away.

The start is the worst. Then after a few months the situation improves noticeably. Habituation, whatever you call it.

Most struck with tinnitus go to that improved category within a year. They can hear the tinnitus at least under some circumstances, but it doesn't control their life and their quality of life has improved almost back to the original level pre-tinnitus. (Thinking here myself, if my QOL was 10 pre-tinnitus, it was probably 2-4 for a few months after onset, and then slowly came back to about 8-9).

Markku-
Very well stated.

Regarding funding in the US, I think there is an effort to get more funding for vets. There are a heck of lot of soldiers coming home with this condition.

Getting US politicians to agree on funding is another matter. The present Congress is the lamest bunch of bureaucrats ever, in my opinion.

Fish questioned "putting too much faith in the ATA". People have a choice of donating to the ATA or other international tinnitus organizations, or they can also invest in business ventures. There are tinnitus business ventures looking for investors.

Although I gave $100 to the ATA, who knows how effectively that money will be spent? (Could be $100 wasted on another magnesium study for an audiologist's Phd.) Now, if Dichonics was looking for looking for investors, perhaps I would put some real money into that pot!

 

[erik]

Yes well put Markku. In the scientific and medical community, a tinnitus "cure" is just not that important, high on the "list" or maybe not even realistic at this point without more radical funding. I think in coming years, the best we can hope for are more effect treatments and new drugs to help us better manage tinnitus as they find out more of the mechanisms behind tinnitus. This is how it works in medicine, no real cures, just "management" for most chronic conditions. And sure, as with every condition, even tinnitus, there are those few % that completely recover, but for the majority of people, they do "just have to "live with it" the best they can.

 

[Jay M]

Also (and unsurprisingly), Lars Ulrich and James Hetfield from Metallica.

The irony of the song "For Whom The Bell Tolls..."

 

[Relic Hunter]

If I had a few hundred million in the bank right now I would be getting no better treatment for my tinnitus than I do now since there is no effective treatment. I would however be funding massive research projects for the treatment and cure.

The veterans administration is probably funding far more research than anyone. Not that the government gives a damn it is just that it is costing about 3 billion a year in compensation and related care with no projected decrease in the near future.

 

[Sound Wave]

What strikes me odd is the 'Big Pharma' and their apparent lack of interest in T R&D, since many people with T would pay almost anything for a cure.

 

[daedalus]

Well, many people give money to scammers, sometimes big amounts but the same people balk at the idea of giving to research and advocacy.

That being said i waited several years and spent a fair amount of money in ineffective treatments before donating.

About rich people who should fund research, that's exactly what has happened with the TRI. Founded by a millionaire who put 12 million € in tinnitus research over several years.

Advocacy is important to get public funds. Showing the politicians that a lot of people have tinnitus at heart require a large mobilized crowd. Trough a lot of small donations for example. But it is very hard to mobilize tinnitus sufferers.

 

[Frederick86]

As I see it, the main obstacle in the funding, public or private, for a cure is precisely the very idea that almost everyone "habituates", so most of tinnitus community settle for that idea and regards it as the best they can ever have. If more people decided that's not good enough and started to demand better treatments to their docs AND at the same time to do crowfundings for the treatments that have the most chances of a cure/lowering volume we would be onto something.

What about contacting some of the most promising companies, asking them how much would they need to improve their research, and start one or more crowfundings for those? Maybe more people would do something if they realise that real silence is achievable AND there is more people starting to do something about it.

Someone has to start, and I think this is as good a place as any other...

 

[Champ]

Yeah, people hear the term "habituation" and hear that most tinnitus suffers get to that point and they say, well, guess it's not worth researching.

Habituation is not a binary thing. Some of us habituate to a point where we don't mind it at all and our minds reaction becomes the same as pre-tinnitus. I imagine this is a small section of the larger pie. I imagine most habituation ends up with people wishing it was gone still, still hearing it and being still distracted by it, but moving on with their lives.

This, in my mind, is the most important point in getting more research going.

 

[Frederick86]

@Champ that's exactly what I think too! That kind of "habituation" I call it resignation and not only that's not for me, I think that shouldn't be an aim for anyone.

Even in the best cases of "real habituation" both neuronal pathways and hearing are screwed and VERY vulnerable. Then tinnitus can very easily get louder with just anything (a cold, a change in medication, an unexpected loud noise besides you) and that time it could very well be so loud that gets unbearable. Even if you "rehabituate" that new T level, that's more months of your life that are spent suffering.

That's like walking with a time bomb in your head that carries within a ticket to one of the worst possible tortures, a real Russian Roulette for your chances of peace of mind. Why anyone should accept being told that habituation is any kind of solution then?

I passed already for the stages of getting T, looking for cures, then "habituating" to the point that I went on and regained somebut not all of my peace, then it got gradually worse again even when I wore plugs around noises, avoided meds and did everything to not get worse.

Why should I think that I have to buy the idea of habituation anymore? I'm tired of carrying the Russian Roulette in my brain with the prospects of more time of suffering in the future. I don't want to be convinced to train my limbic system as a dog while the damage is still there doing the menace of bigger T very probable and so real.

So I say let's do this. Seriously. Who do you think we should contact first to consider them for crowfunding?

 

[mandi]

This thread needs to be carried on... I believe that all the habituation talk is good and helpful, but not when it causes us to become passive to getting some cures for tinnitus. And as a newcomer, I am surprised at the passivity to demanding more research be done on this area. I am surprised at the little offered this suffering population!

We need to get out there with our issue! Is there a social stigma so this population has learned to hide their condition to a degree? Why aren't there more conferences and gatherings for information and support? Where are these conferences and gatherings listed? We should have these advertised everywhere, and get everyone to go. We need the press and media to notice our cause. We need big Pharma and technical companies to see us as a big population and huge issue.

I've noticed many times we are told to just forget we have it and quit talking about it, then it will go away. While that has some merit, it is not what we need to do to get some answers for dealing with it and getting rid of it!!

We need to get our population noticed and demand answers from the scientific and technology communities!!

 

[RB2014]

Mandi, many of us have already tried to do something, but I have come to realize there are just too many causes out there. Everyones condition is different.
I wrote a letter to the Bill Gates foundation, I donated money to the Stanford cure for hearing loss, I tried to raise some awareness on some forums. At the end of the day it takes big money to get something like this going.
I read an article the other day about big pharma that made sense. It takes millions of dollars to develop a drug, do testing, trials, etc etc. At the end of the day it may or may not pan out. Its a big risk for them. Its a bit like winning the lottery for them. I think they would need the research basically handed to them to even think about taking on such a task as Tinnitus.
I have written this before, but most of those celebrities lead pretty hectic daily lives. Its very easy to put tinnitus on the backburner for them. Its the rest of us sitting in front of a computer with our day jobs that it bothers the most.

 

[mandi]

Thanks, RB2014, I see what you're saying.

But let's please all keep praying, pushing, advocating, and rallying for answers to come soon. Wouldn't it help to have more gatherings, conferences, events to draw attention to our causes?

 

[Aussie Lea]

praying

This helps the least. If there was a God, we wouldn't be in this mess.

 

[squeek]

With tinnitus being very debilitating for many of us, finding work where the environment can cope with our constraints is extraordinarily difficult, which in turn can make us poor.

It's our duty to become rich (a big ask obviously), so that we can contribute significantly to finding cures. I hope to become rich so that I can create such an organisation. I feel that tinnitus is poorly categorized, which is leads to a one-cure-for-every-situation and everyone here is going around in circles. I'd love to see an organisation that makes categorisation easy and us sufferers can make better assessments of medications for their particular variation of tinnitus.

 

[Path Maker]

I feel that tinnitus is poorly categorized, which is leads to a one-cure-for-every-situation and everyone here is going around in circles. I'd love to see an organisation that makes categorisation easy and us sufferers can make better assessments of medications for their particular variation of tinnitus.

@squeek Well said! It seems like every person with tinnitus has to re-invent their own form of wheel and with many time-wasting blind alleys along the way. Centralization for assessments and treatments would be a MAJOR improvement. Hit-and-miss doctor visits until you find a passionate, dedicated one, etc. just leaves people spinning.

@Steve , wouldn't this be a cool goal to steer toward also, in the Join the Dots thread/project? Getting all medical professionals onboard to develop a sort of "Tinnitus A to Z" pathway for new patients to be guided by as far as initial investigation of their type of tinnitus, care plans, etc. Eventually, I even see sponsored television commercials to make people aware that this kind of condition 1) exists, 2) can be worked with, and 3) to give contact information for reaching a nationwide group of medical professionals in the Tinnitus A to Z network.

Something like that. Just one well-organized pathway/protocol for multiple centers to follow.

It would help save so much time for patients. And support/coping skills could also be addressed by these centers, to replace and abolish forever that horrendous "Go home and live with it" statement.

 

[Cityjohn]

I wonder what types of treatment they are using/getting/taking when cost is not an issue?

The problem with money and research is that you can't buy intellect and most people wrongfully believe researcher are smarter than the every day man.
My partner used to be a really bad artist *smack!* .. so one year after meeting me she became a mathematician. I don't expect her to ever win a fields medal or do any groundbreaking research but truly anyone can become anything. All it takes is hard work, maybe a little help and meeting the right people.
This means 90% of scientists are not there to make a big impact if you know what I mean.

For complex questions as we find in tinnitus we need to find exceptional people that since birth have done nothing other than pay attention, have had a complete disregard for the consensus of others, are mortally motivated to prove others wrong when the science is right, and know the difference between beliefs and facts.

"Go home and live with it"

Wanted to slap my ENT slightly when I heard that, but other than that she's amazing. My audiologists supervisor told me he can't help me if I don't let go first. I told him I'd give him a call when I found the cure.

 

[click]

The problem with money and research is that you can't buy intellect and most people wrongfully believe researcher are smarter than the every day man....

SO true!!!

 

[Steve]

@Steve , wouldn't this be a cool goal to steer toward also, in the Join the Dots thread/project? Getting all medical professionals onboard to develop a sort of "Tinnitus A to Z" pathway for new patients to be guided by as far as initial investigation of their type of tinnitus, care plans, etc. Eventually, I even see sponsored television commercials to make people aware that this kind of condition 1) exists, 2) can be worked with, and 3) to give contact information for reaching a nationwide group of medical professionals in the Tinnitus A to Z network.

Something like that. Just one well-organized pathway/protocol for multiple centers to follow.

A lot of it is country specific. The BTA recently did some good work in the UK, looking at the patient pathway through our healthcare system. It's laying the ground really to show that it is cost effective to treat tinnitus. The follow on step is to say - okay, what is an effective way to do this?

There isn't one answer to that question. The understanding of sub-types is key (in my eyes anyway) to making sure that interventions are a success. We need to agree some sub-types first, although the practitioner could do a thorough exam and treat the identified causes - I'm not sure if there is enough time in most system to do that properly.

If you search for - Tinnitus Clinical Pathway - you'll see some work (lazy from me I know, I'm on a training course this week so limited in time ) There are identified pathways but I don't know if they are suitably taking into account the actual patient and their specific causes in a way that could lead to an effective treatment protocol.

I don't think it's a task that's beyond us, though I often think too big so might be wrong. There is a lot of data out there and any gaps could be filled in. At the very least we could provide a platform for change.