Can Tinnitus Be Cured? What Is Going to End Up Being the Cure?

jebus01 is me... hehe

 

I have had tinnitus for 8 years and just recently, due to workplace noise, it has gotten much worse to the point where masking it with the radio or tv is impossible without getting noise complaints from the neighbors. I had been hoping that, in the 8 years I have been trying to ignore it that maybe, just maybe the medical community could have found a cure by now. But alas it's still in that 10-20 years state of development hell it was in 8 years ago.

When I first mentioned tinnitus to my GP he immediately, and condescendingly replied "get used to it." Lacking any other option that's what I did for years, and seeing how little progress has been made in the ensuing years, undoubtedly will continue to have to do so until I die. This is fairly disappointing. I had thought in this age of technological wonders to the point most advancement seems indiscernible from magic, at least something would have been discovered in the last few years. When I first got tinnitus smart phones weren't even a thing and people were still impressed by plasma televisions. This lack of progress has caused me to ask a few what I should think are no-brainer questions. What gives? Why isn't there a cure? Do companies really think there is no money in a tinnitus cure?

I decided to look up how much serious work has actually gone towards curing tinnitus, and I was amazed at what I found. First of all almost nothing is spent on tinnitus research yearly. Public AND Private combined amounts to a meager $10 million dollars annually.¹ In my opinion this sounds like an overly optimistic overestimation, but less take this statistic at face value. Now $10 million may sound like a lot just because it's a big number, but I think we need to use some comparisons to show just how little this is. For example the average mortgage for a home in America is $235,000.² So go outside for a walk and keep walking until you count about 40 houses and that's the value in total spent yearly on tinnitus research. How many single detached houses are there in America? According to the 2010 US census About 91 million.³ So about .00004% of that value is spent on tinnitus research. That's no knock against real estate prices, or anything, the point is simply to illustrate when looking at the big picture what a tiny sum $10 million is in to today's world. For any old timers out there you might be interested to know that with monetary inflation the amount spent annually on tinnitus research in 1960 dollars would amount to only about $1 million.

Now this might seem like I'm blowing smoke after all tinnitus objectively isn't an important medical problem compared to say, cancer, so why should it get any funding for research anyway? Well you could say that and you could say tinnitus doesn't hurt anyone, except you'd be dead wrong. $1.28 billion was spent on veterans for tinnitus disabilities in 2011.¹ And the cost is set up only to go higher, supposedly up to around $2.75 billion sooner rather than later. In addition tinnitus is at least bad enough to get people disability payments for medical treatment, and it's pervasive enough for Uncle Sam to shell out at least a cool bill a year for it.

I'm guessing most people right off the bat probably noticed the ridiculous disparity. That's right that $10 million dollars a year spent on research amounts to only .7% of the annual total paid for disabilities. Not 10% not 2% not even 1% a mere .7% is all research gets for tinnitus compared to disability expenditures. For an entire year. Society is footing the bill, at a large cost, for treatment for a problem that has almost no money getting spent on looking for a cure. And as anyone half way sane would expect from such a ludicrous situation, there is no cure in sight.

"And what does this billion or so actually go to?" you might ask hopeful at least something is getting done with this money that doesn't go to any research whatsoever. The answer? Not much. If this video is to be believed⁴ the tinnitus disability spending mainly goes towards paying some psychologist big bucks to condescendingly tell vets what my GP once curtly told me , only at a much higher price to the US taxpayer. Here is an excerpt of some of the genius insight one can attain from attending a tinnitus management class by a board certified psychologist:

Truly this visionary and enlightening analysis is worth the $2 billion a year.

So every time someone tells you there's no cure, but that we should remain hopeful and "think positive thoughts" just remember that over 1000 times more is spent each year giving paychecks to
"cognitive behavioral therapists" telling veterans what, in the end, amounts to "get in touch with your feelings and learn to ignore it", than is spent on searching for an actual cure .

This just goes to show how badly they've managed to put the cart before the horse in this small, friendless hovel of the medical world. Instead of spending billions on a legitimate cure they spend billions on managing a supposedly incurable disease. Well maybe if we bothered to spend as much on research
as we did on "management" it wouldn't be an incurable disease in the first place.

What's fascinating is this sort of negligent lack of funding pervades every field of medical science. Cancer, which kills hundreds of thousands a year can only manage to get about 2 billion a year for research funding.⁵ In a country with a yearly GDP of 15 trilllion that seems downright criminal. Supposedly people care about finding a cure for these things, but with such small amount of time and money devoted, public or private, one has to really wonder.

Apparently $120 billion is spent on medical research as a whole per year⁶ meaning about .008% of all medical research money is spent on tinnitus research. Of this tiny sum, available, prospects for a cure look even more troubling when you take into account a decade old study released on the quality of medical research in the united states:

Ignoring the small quantity of money available for tinnitus research one has to wonder how well and how efficiently money is spent for diseases that do get adequate funding for medical research much less for niche issues like tinnitus. How much money is going to actual research and how much goes down the black hole of consulting, advertising, office politics, and lunch catering?

I think it's time to face the facts, there has been no tinnitus cure, simply because nobody cares and no ones in any hurry to find it. Research is underfunded, aimless, and leaderless, and every organization that has anything to do with tinnitus is more concerned with making a profit than actually solving it. There isn't a single organization designed or motivated for lobbying for a cure.

In the end the only winners are the snake oil salesmen who use google press releases to freely market bottled bilge water as miracle cures, and the behavioral psychologists who get to pay their kids through college courtesy of Uncle Sam using their similarly quacky "tinnitus management techniques". In the end more people have decided they have more to gain financially from tinnitus continuing to exist as an incurable disease than they do from trying to cure it.









¹http://www.starkey.com/blog/2013/05/salute-to-silence-national-tinnitus-awareness-week-2013/

²http://www.housingwire.com/articles/average-mortgage-amount-increases-20000

³http://wiki.answers.com/Q/How_many_single_family_homes_are_there_in_the_United_States

⁴http://www.pbs.org/newshour/bb/science/july-dec13/ears_11-06.html (relevant clip starts at 6:27 of video)

⁵http://www.slate.com/blogs/quora/20...of_cancer_research_dollars_go_every_year.html

⁶http://www.usnews.com/news/articles...esearch-spending-drops-while-asia-makes-gains

⁷http://www.cbsnews.com/news/spending-on-medical-research-soars/

 

Im thinking that in Tinnitus probably a combined therapy would be most benefical: some medicine like AM101 and hair cell treament But I still think it will take ages before we have doctors in every country who know how to regenerate these cells.

 

Wounder what De Nora belives is the number one treatment that is going to work within 3-5 years.

 

Lets hope he is right!

 

Thoughtful, intelligent post. You obviously put a lot of time into it. I don't agree with all of it but I do agree with a lot of it -- and, more important, it has given me a lot to think about given its well-researched position. Can't post a more detailed response right now but will later.

In the meantime: thanks, @driveninsane

 

This has completely shattered my hopes. I'm feeling absolutely awful because I know you're right. Tinnitus may not be life threatening but I certainly ruins lives. I hate it. Everyday. And all because my ears gave up on me. Im 26 and I don't see myself making it past 30. What's the point if I can't lead a happy life?

 

Did anybody ever try to get contact with him ? He has mentioned his mail Adress in the Tinnitus Book as far as I remember. Would be interesting to have conversation with him About the future therapies or trends in tinnitus research.

I hope also he will continue with funding even he would have found relieve in future .

 

Sorry about that. I only wanted to point out what I think is the roadblock towards getting a cure. People simply don't care because, in my opinion, tinnitus sufferers as a whole, aren't vocal enough. Good people, who would otherwise be productive, happy members of society are having there lives ruined by tinnitus, and for the most part the medical community is completely apathetic.

The way I see it is this. Unfortunately our society runs on "the squeaky wheel gets the grease syndrome" so being calm, considerate, and not trying to raise too much of a fuss, despite being the polite thing to do, is the exact opposite of what will get results. If we continue to accept "learn to live with it" style advice we'll continue to get no where. It's only when people start complaining that anything is going to get done. If every tinnitus sufferer passively accepts the advice from their GP to just ignore it, like I did, we will continue to get nowhere because there will be no pressure to actively search for a cure to any meaningful degree. Tinnitus sufferers, and I hate to say this because it goes against my every instinct to criticize people for being conscientious, are simply too nice.

The fact I'm forced to listen to videos like this, at full volume every hour I'm at the computer not because it masks the tinnitus but because it distracts me slightly from it, is enough to make me think tinnitus is a serious enough problem that it deserves actual medical interest. Especially since, compared to most people here I think I have a mild case. But like most people with tinnitus I have met every regular doctor I have told about it dismisses it outright as unimportant despite the fact it can drive people to suicide.

People throughout society, doctors included, need to be made to understand how annoying and debilitating tinnitus is, and to my knowledge, organizations like the ATA have completely failed at this very basic task. People are naturally dismissive of pain and problems that don't currently have. It's virtually impossible for a person with a functioning leg to even imagine how terrible having a broken leg is even if they have had a broken leg in the past. So people with no tinnitus in their ears must think, along those exact same lines. "I don't have it therefore it can't be that annoying." This is the point where I think it's very appropriate for tinnitus sufferers as a whole to get confrontational. I know that sort of thinking might be deemed "unhelpful negative emotions" by certain cognitive psychologists, but I believe there is a time and place for every emotion, and when you can see how objectively nothing is being done to fix a problem, it's clearly the time to get angry and demand action.

Just for example I'd like to use a personal story from my own life. My mother is a fairly short woman only about 5 feet tall. She's spent her entire life getting bowled over, ignored, and otherwise disrespected by service people, customer relations people, attendants, and just about anyone else in public because of her height. She can literally stand in front of a cashier at a fast food joint for minutes on end, and not be noticed despite being the only one in line. On the other hand growing up I had a friend's mother who was the exact same height but was incredibly loud, vocal, and disarming. If she didn't like the way something was going she let you know. There never was a time where she was ignored or disrespected in a similar manner and you can be sure if she felt slighted there would be hell to pay. The fact is people who are short are going to naturally be ignored and dismissed unless they stick up for themselves. Socially this phenomenon is called Napoleon's syndrome and I think it has a very important implication for the future of tinnitus research.

In the medical community tinnitus sufferers are very short comparatively. No one takes us seriously. Maybe if we complain a little they hand us over to the expensive, wishy-washy, and results free world of psychologists to try to distract us from the fact there is no cure. And that's the current status quo. But that doesn't need to be permanent. IF tinnitus sufferers stop taking "learn to live with it" as an answer and start demanding a cure, we can prod the naturally apathy filled and slothful medical community into more decisive action. Of course that won't be sufficient as in the modern world only money talks loudly enough for most people to listen, but it would go a long way to actually getting taken seriously. People seem to listen the most to whoever complains the loudest.

However the biggest step I think is to get the word out on how pervasive tinnitus truly is. I was amazed a few months back when I still believed tinnitus was a rare occurrence, to find one of the local radio hosts on a radio station I listened to got tinnitus simply from going to a NASCAR event without earplugs. He was so depressed that the mere mention of it was too much for him to bear. Yet after that one mention he never spoke of it again, probably scared that he would bore or annoy people by talking about his problems. With his public platform he could theoretically educate millions of people weekly or at least monthly, but probably because of the expectation that he shouldn't bother people with his discomfort by talking about tinnitus he doesn't. This is the sense of silence, and secrecy, that due to fears of public disapproval, is holding our movement back. We choose to suffer silently instead of standing up for ourselves.

We need well sponsored public relation campaigns that highlights the annoyance and danger of tinnitus. We need to get the public to feel as annoyed as we are that there isn't a cure. This is public relations 101, and isn't as far as I know being practiced by a single tinnitus advocacy group on the planet. Only when tinnitus sufferers have adequately motivated the medical community and populace at large, that can we actually hope that someone will start making some progress.

 

What is the next step to advocate for tinnitus research and funding?

 

Great post. I've had tinnitus since 2009 and after reading this I wanted to register so I could tell you that. What you've written here is pure truth and it's exactly how I feel.

I have tinnitus as part of a rare neurological syndrome called "visual snow syndrome" which is believed to be a complication of migraine. Some people have this worse than others, and it often seems like the people with milder symptoms who go around saying "you can adapt to this, it isn't so bad" are actually sabotaging it for the rest of us.

It's surprising how slowly and lazily medical research progresses. As one striking example, I was recently watching a video lecture on genetics and human evolution which was talking about sickle cell anemia. For a long time it was a huge medical mystery "why is sickle cell anemia so prevalent in certain African regions?" It took them until 1954 to consider malaria and put two and two together. It's like wow, it took those idiots that long to figure out something so obvious.

And think about HIV, how much money has been funneled into research for that and they still don't have a real cure. If diseases that have billions of dollars of research money can't even get cured, how are they ever going to cure tinnitus? I'm just hoping for some accidental breakthrough, perhaps an improvement in brain scanning technology will show the way.

 

The problem with HIV is that it is an adaptive virus with many strains. Scientists have actually used the mutation rate of HIV to identify how old the virus is, where it started, how it spread etc. Same reason we haven't cured the flu, essentially.

I think you overestimate the scientific practices of the past. Things seem obvious in retrospect. We only sequenced the human genome 11 years ago. 50-some years ago we were still blowing up the islands of Bikini Atoll so we could understand the long term effects of radiation. To think those things happened such a short while ago and are now almost taken for granted. I think we're moving rather quickly, not slowly!

 

I recall also how up until very recently (into the 1990s) doctors thought ulcers were caused by "stress and spicy food" (sound familiar?) then they found out ulcers were caused by the bacteria H.Pylori, and instead of taking ulcer drugs for the rest of their lives people just needed a one time dose of anti-biotics. The fact that H.Pylori caused the ulcers was discovered about a decade before it became common medical knowledge. The ulcer drugs were one of the biggest money-makers for the pharmaceutical companies and the end of the ulcer drugs has been credited with the pharmaceutical companies shift towards marketing drugs for mental illness like ritalin and prozac.

 

I absolutely agree with all you said and feel pretty sad about the facts. If there would have been enough money to simultaneously do different clinical test around the world and a large group of people to process the data and lobby, than it would only take 1 or two years to bring something like am-101 on the market. There is absolutely no reason it should take this long! And this Jennifer Gans person is on my bad list just because of that one quote you mentioned. She doesn`t understand the mechanics of mindfulness herself. mindfulness is clearing your mind and reaching a state of inner silence ... do I need to say more??

 

I'd like to point out that the only thing stopping us from growing new hair cells, is that protein "notch." Otherwise there are hair cells waiting to be re-grown, lying underneath our damaged ones right now, just like the hair on your head has more hair underneath, and re grows after a hair cut. Scientists are trying to work around the barriers. It can happen, and with research being where it's at now, we aren't that far away. Humans have always found ways to use nature to their advantage, and a special gene from mice seems to be one of those things we can use. There is hope guys come on.

 

I was going to post here but Erik said pretty much everything I was going to (and said it well.) Reality is: there are many other neurological disorders that have receive considerable attention and still there is no cure. There is no cure for Alzheimer's or Parkinson's.

Instead of complaining about no cure for tinnitus, ask yourself: what have I done to promote developing better treatments? To encourage prevention? Have I donated to tinnitus research? Have I talked to my ent about offering more treatment options, or educated my ENT about the fact that I dont have to "live with it."? Have I offered to talk to school kids about tinnitus and prevention? Have I offered to start a support group in my city if there isn't one?

A "cure" may be many many years off. But better treatments are right around the corner. And in the meantime, there is much work to be done... work that we can do.

 

Medicine is more focused on treatments, other than antibiotics(infections) and some surgery there are no cures
for anything in current modern medicine.

 

Well let me ask you. Had you ever heard of tinnitus or been aware of it's incurable nature before you got it? I certainly wasn't and I'd guess most people are blissfully unaware of tinnitus and the danger of loud noises towards it's development. That's why I think the most important possible thing we could do above all else, is support a public relations and education campaign. Heck, in all my time of consuming media, even after I got tinnitus I've seen it referenced maybe once on TV in passing.

As far as I know this isn't getting done by any tinnitus organization . For example the American Tinnitus Association (ATA) seems very exclusive, focusing more on publishing old media like magazines and selling subscriptions. Their youtube channel has at most a few celebrity endorsements and poorly put together educational videos that look like they had the production value of a high school class project. It's nothing close to the sort of public exposure a serious tinnitus cure movement would need.

This video by the UK based tinnitus clinic is much more suitable for public awareness. However it's still not attention grabbing, emotional, or simple enough as an introductory tool that could be used to increase exposure to a wide public audience. I think so far, this 7 year old video

TINNITUS- Can you hear that?

is easily the best one I've seen. It's simple and to the point. The real problem is media exposure is expensive so even if well made videos like this are produced, it costs a lot to make sure they are put in the public eye. Right now, in terms of garnering public support we're at step 0.

Right. Unfortunately people, are usually very timid about bringing any complaints to their physicians. That's especially the case if they have problems that are rare or are considered "unimportant".

Well I'm more of the hope that the reason billions of dollars in funding haven't yielded any results is more because of the fact the money isn't being spent efficiently rather than any inherent impossibility of a cure. If a system develops where people are dependent on this money as a paycheck, and expectations of results aren't expected they have a lot less motivation to push the envelope. The alternative that, even with billions of dollars of funding spent efficiently, there isn't a cure is even more worrying.

 

incredible posts, driveninsane, we need this sort of thinker in our community and someone who will actually stand up to all the bullshit and LIES in the medical world, keep posting, keep thinking, most importantly keep fighting..

 

Good post , agree.

 

I mean i guess those treatments wont be cheap, so should I already start saving for that or....? I think nobody has for example 25 000 to spend just like that? This bothers me alot

 

25k euro would be for neuro surgery, but i think 5k euros will be the price to be injected with am-101.

a lot less if you're covered by social welfare.

 

Normally the state covers it If you have no hearing loss no one would cover the operation but stuff like am101 etc could partially be free( eg. lets say you pay 50% or smth) I think Finland has quite a good social system so no worries However, lets say if Am101 comes out in smth 3-4 years it could take some more years before it is available for free (due to bureacracy).

 

My insurance is prob the best out there.. Hope that makes a difference.

 

http://www.asha.org/Publications/leader/2013/130101/The-Future-Present.htm. I dont know if this was posted already.. If it was you can delete it but i thought it was interesting!

 

If/when there eventually is a way to repair the damage to the ear which causes T, do you think there will be any difference in success rates depending on the frequency of the T? I'm asking because of how the Hz's are distributed in the cochlea..

 

When I think in terms of am101 and what I remember @ResonanceCEO said it would be easier for the gel to reach the higher pitches because it would take longer and more of the gel to reach the where the lower frequency hair cells are. They would need a longer treatment over more days I think.