Hearing Noises Since 1999. The Secrets to My Success!!

Well..."Success" is just a getcha here word; a tickler....a smoke & mirror thing.

However, I am 15 years into Tinnitus and it's incumbent upon us old timers to resurface every so often and try to assist someone that is riding the sine wave....the peaks and the valleys.

History wise, I used to spend a lot of time in Tinnitus/Hypercussis forums and SIGs (for the whipper snapper...the Similar Interest Groups) as a member and then a forum moderator and mediator. It's a never ending supply of Tinnitus patients that come here and other forums for answers....easy answers and solutions.

So far...no solutions of substance. I hate saying it as 15 years ago I just knew that a cure was right around the corner. And I went for each offer and opportunity that came about...either by the pencil thin moustachio'd snake oil salesmen with a variety of cures or an even worse group of snake oil salesmen in white coats and stethoscopes. They offered up both easy answers and solutions....and I was eager to hear them and to try out their solutions not only for the benefit of Tinnitus-Afflicted Man/Woman kind....but most importantly, for Dan Turner.

Please take my advice...it's a money back guarantee that comes with it....but hold onto your money. I've grown to despise too many of those that offer a "cure" with the same disdain as I hold for those guys that try to sell you a $10,000 casket when you're trying to make a decision of the final events for a loved one. They will try to take advantage of you while you're down...when you're at your most vulnerable. If you read some of the alternative treatments found herein these pages....it's a sad slice of life for those with Tinnitus that are seeking relief and a unfortunate lack of class or humanity that are trying to sell their Tinnitus Cure-All products.

That is the rattling yet terrible news and views on the state of the art for the Tinnitus Cure. It's just not there....yet.

On the other end of the terrible news is the example that someone like me can make it through the beginning onslaught of profound realization that this is forever. Everything after that point has just been life-maintenance. I accepted that this was not yet the time for the cure and started to break down what I need in order to enjoy the life and cards dealt.

A lot of old timers...men and women....have been where you are today; where I was and had more years with their version of Tinnitus than most of the residents of T-Talk. Those that are still with us are still waiting but by their absence here...have found their own peace. They do outnumber the large assembly of T-Talk, so the example here is that in time...you'll find the same peace of mind....hopefully sooner than later.

The secret to their success is the same as mine! Time is a huge part of it. You will adjust. You will accept. You will find your own work-around and once you realize that the cure...to date....is just not being dependent on others to "fix you"...so far the snake oil fields have yet to do any better than what your brain will do for you when given the chance. It won't be perfect...but it's made my life enjoyable and livable.

I know...it's all generic in what I offer. However I offer what the newbie lacks and that's 15 years of coping, dealing and finally accepting. I think it's important for the new Tinnitus sufferer to realize that you're not the only one in this big boat.

 

My dear @Dan Turner

Your post is amazing. Thank you very much for taking the time to write it.

 

Great post @Dan Turner .
All newbies that should read your post.
I've tinnitus for many years and have many ups and downs. One must learn not to fear it(T). It is hard to describe, unless one has walked in your shoes. God bless.

 

Thanks guys and gals....I hate to come here sometimes and see the suffering that comes apparent. I get truly irritated to see some of the "cures" that have too many of our good friends in their cross hairs. I've been clobbered by those less than altruistic types and had thought I was beyond all that until last year when I contacted "Restored Hearing" and fell for the song and dance of their trials and 1970's style therapies to retrain the sensor hairs via sound waves. After all the time involved....I was buying into the concept but stopped short when things took a turn for me to offer up my credit card....even after being part of the study.

It can happen to anyone...subject to the sales pitch and unfortunately the periodic loss in morale of a Tinnitus sufferer.

There are members of T-Talk that have taken drastic measures and suffered the consequences. I see one familiar name that was a number of years ahead of me when I first came aware of my situation that chose a procedure that compounded his problem.
I almost went the route of sectioning the aural nerve when the neuro-doc advised me that by doing so, the T-noise would be gone right along with the hearing in that ear. I chose not to go that route and later discovered the horror of those desperate souls that did take that option that proved the case that the T-sound is generated elsewhere. I made the statement then and hold by it....there wouldn't be a jury that would convict me if I had gone the route of losing my hearing in my right ear and still had the noise that no longer had an ambient sound to offset the audio level.

And that is good enough reason to stop in every so often to offer up a little help and experience before someone else falls prey.

It's a tough hit to take for anyone and most especially in that first year. I suppose the only thing we can offer is assurance that sooner or later....and it's out of our control....your brain will adapt for you. Just like taking a F-15 fun flight....just strap in and attempt to enjoy the ride.<G

 

I hate to be a downer, but I didn't find this post helpful. Essentially Dan's advice is what I hate most: just give it time.

Well some people don't have time. Someone on the verge of suicide isn't going to stick it out for an unknown amount of time. Then what a out those who've had T for decades and are still struggling? Are they just supposed to keep waiting?

"Time" is such a bogus answer in and of itself. Think about it. If you go to a doctor with a broken arm, doesn't he just say, "don't worry, in time it'll heal"? Heck no! So why do we pull this line on T sufferers?

What T sufferers need are reasons to have hope, and ways to deal with T NOW. They need practical advice on how to take their mind off of T, advice on how to deal with anxiety and depression.

 

@MattK You completely missed the point. I understand yours but there's been people with mild to severe T for centuries that have lived and survived for decades. The only difference is now we have this lovely thing called the internet that is the worlds largest collection of information and at the same time whining, bitching and complaining. Not saying you! Just saying. We have no choice of our condition until treatment is real. Time is the only thing that keeps on going. Given how how much things have changed in 15 years since @Dan Turner got T, the understanding behind Tinnitus is much more of a reality than snake oil.

 

Because there is NOTHING else a doctor today can do to fix your tinnitus. There are really only two things you can do. 1. Accept it and find a way to live with it and let it no longer bother you. (Time is a huge factor here) or 2. Put your focus and energy into finding a cure or treatment that does not currently exist.

It sounds like the OP spent a lot of time on option 2 and realized somewhere along the way that it was a painful way to live and switched to 1.

-Mike

 

You've missed my point. I'm not saying there is a cure. I realize as of today, habituation is the only real game in town for most of us. But what I'm saying is practical advice, methods of coping, hope for the future, effective methods for sleep, etc help someone a lot more than "give it time". And, as I've said, what about those who've given it DECADES and they STILL suffer? Time didn't do a thing for them but make them older.

Sure, perhaps most people get over their suffering with time. But what about those that time didn't help, or those who can't wait?

 

No, there are also things like methods of coping, good advice on sleep, good ways to mask, et. Should be mentioned as well.

And yes, people "live" with T... Only because they haven't committed suicide. But what about those who suffer every day and have for several years? How much more time will it take for them to get better?

Obviously I'm not concerned with people who naturally habituate. I'm speaking with people who don't in mind.

 

OK, I see what you mean now. You're right, he isn't giving advice on how to get to a point of habituation. I took his post as speaking more to those who are spending a lot of their time, energy, and hope toward finding a cure or treatment to make it go away. It's interesting from his post that even 15 years ago, they believed a cure was right around the corner. How many people today are holding themselves back from living a happier life because they are waiting for something like retigabine to cure them?

-Mike

 

We always have to remember there are many roads leading to Rome when it comes to tinnitus relief. There is no denying that Time is an important element in any recovery in the absence of a magical, real cure from the medical field. Just because it doesn't work for some doesn't mean it doesn't work for others. Reading over the success stories enough (and I have read numerous from different forums in the last 5 years) and you will find one common element in the success stories - TIME. The passage of time can dampen the sharp sensation of T to the nerves.

It is not the only element of success. There are alternate treatments which may not cure T but do help the sufferers to cope or accept T, things like CBT, TRT, meditation etc. etc. But unless the ringing stops at once like a magic pill, not many can say once they start a treatment or a strategy, their T immediate stop or drop to barely audible level. It still takes time for the body to absorb in the new sensation of T and the grief of loss of silence in our life. Even TRT experts cannot tell you that the treatment can turn the patients around magically in a short time.

I don't know about others, in my first few months of hell with T & H, I don't think any treatments, methodologies, strategies or approaches would have made a dent in my suffering. Benzos, ADs and sleeping pills were my best friends to cope and to hang in there. However, after 3 years my life was back to normal and honestly my T is still the same loud and ultra high pitch. Last week I was fishing in the rapids of a salmon river and I could still hear my high-energy laser-beam like dog whistle T above all that raging water besides me. Yet I didn't give a dime to it. No way this was possible 5 years ago. Back then no amount of will power or positivity could stop my nerves from caving to relentless anxiety and panic attacks. Not now. I can face the same ringing now without negative emotions. Did time do the magic healing. I don't know. It is up to others to debate. But the essence of time, accepting the reality of life with T (if not T itself), flowing and adapting, these are all very important ingredients as can be felt in readubg many success stories.

 

I am considering this. I am on the third month deadline and treatments do nothing. One ear and silence sounds better than two and the constant terror. But then one ear and constant terror sounds so "sweet"...

 

When you guys have that magic pill. let the rest of us know.

Folks...it is what has worked for me; most likely a zillion other folks that have moved on and away from a group because they no longer find the group necessary. I chime in occasionally just because it's still a affliction that the newly afflicted haven't been able to get a handle on. Been there done that...hated the whole deal; but the options are none and none.

I haven't got an issue with those that show that they're within the last 12 months of realizing that they have tinnitus. That was another issue with me as well....I was damn ready to "take a flamethrower to dis place" just because I wasn't getting the straight scoop on what was going on. Or that's what I wanted to believe.

I didn't have time to wait to habituate....a term that I don't care for, but the one proffered around. I was and still am an active musician....a jazz pianist from combo to a weekly gig in big band. Lemme tell you about playing a grand piano in front of a 20 piece orchestra with all the horns pointing at me while I'm trying to HEAR above the din of the musicians and the din of the dentist drill in the right ear.....on stage. I needed a friggin' cure right then before I wound up looking at 20 other musicians playing a chart and they all look up with a "whar's the piano solo?" There's a 50% or better chance that I'm not even on the same measure as the rest of the guys.

I found my work-around and still play the lead piano seat with the Sentimental Journey Orchestra for the past 10 years of my 15 years of Tinnitus. But that's just me....it's made for some anxious times that are a regular laugh riot today.

"Well...that's just great for Dan."
Negative...I'm doing one thing sportsfans...imparting my own experiences of coping, dealing and avoiding. Out of all of the folks that you'll find here....if there is any one person that you should pay attention to, his name is Nagler. He's a T-person just like all of us with more years that me; but he's also one that is on top of the state of the art as an MD who has gone the route of treating tinnitus patients to help them through the rough patches. We live in the same town (around Atlanta) however, I've never met the guy...but I'm always assured that he's pretty much a go-to person when it comes to the snake oil sales industry in regards to this field.

When the credible stuff comes available to treat it....I'm sure that he'll have looked it over from all angles as something viable and worthwhile or just another shark in our pond.

In short, find the reliable sources when someone offers up a solution. I suppose the uppermost thing to keep in mind is that....for all the years that Tinnitus has been causing this personal conflict....that magic pill has yet to appear. Early on...I was very much like a young man that really, really, really had his heart set on a very, very, very pretty and attractive gal.

I wasted much too much time and heartache waiting around for her to call.<G

I reckon the other little tidbit for the day.....log out of T-Talk and leave it alone for awhile. Do what you can or get what you need and then move along. There are always new faces, new peoples......but the problems are consistently the same.

If my comments make you mad....sorry. Eat a Snickers.
If any of my massive missives give a hint of a clue or parallels something that is working for you.....good for you. Keep up the good work.

 

@vasil

You've had Tinnitus since July.....think it through very carefully, especially the part about Not Losing the Tinnitus Sound even when completely and irreversibly deaf. Don't rush anything when you're upset about this relatively new affliction that hit you.

It's also possible that your noise is something Summer related. Make sure you and the ENT are completely up to speed on your aural health.

 

@Dan Turner Yep it can be something temporary, but with each passed day, hope for goint away on its own fades away.
On the ENTs,they made me hate people in white coat. The second time i went to the ENT, he said me in a nice manner that there is nothing to be done and I have to live with it. No tests, no meds, nothing, just "it aint gonna kill you". The worst part is that 2 and a half months later and a dozen ENTs, neurologists and otoneurologists, he seems to be right and that is the biggest sucker punch for me.

 

I think some docs have poor manners in the regards of tinnitus. I know my guy near me gave me the magic...."you'll learn to deal with it..." early on when I went in. I was mightily ticked off....I wanted him to fix the problem.

However, I was probably the 2nd or 3rd Tinnitus patient for the week....and the early sufferers are inconsolable and needing help; my guy lacks the heart for consoling and there's nothing in the way of help that he could offer. To his credit, he recommended against some of the tests that I was heading towards...the only one that he wanted to see results on was just to check on tumors along the aural nerve canal.

I really and truly hate that you're going through this.
I can't recommend the drug....I started it many years ago until I decided it was time to let it go....Nortriptyline. Ask your MD about it....there may be another med that they would recommend. It's an anti-depressant that really didn't do much more than allow me to sleep for a couple of hours each evening, but wake up like I'd had a 12 hour snooze. It gave me a lot more capacity to deal with the day each morning.

Other things that I've tried.....zero-beating the tinnitus noise by finding a river; grab yourself something to eat and/or drink and sit down on one of the rocks in the middle of a rushing or roaring river. If it's the right volume....you can expect to doze off asleep within 10 minutes as the river noise takes control and you're just along for the ride.

Wind noise does a number on me too. I've got a place on the side of a mountain in north Georgia that I'm usually half asleep by the time I arrive just because I know what happens when I sit on the side of the cabin and listen to the updrafts into the trees and leaves.

Some times it's just necessary to put everything into neutral and bide your time while you weigh the situation and look for your options. Clipping the big nerve is not a good option. Can you imagine how pissed off you'd be if you have the sectioning, losing your hearing on that side and all of a sudden...there was this cure?<G

Hang tough Vasil.

 

It's really depressing to realize that medicine has made no new advances in 15 years. We're all still in the same boat as Dan Turner. We're like step-children to the medical/pharmaceutical communities. There are millions off us but since the medical community has decided it's not 'life threatening' we are almost totally ignored, 12 million in America and 40% of our military veterans alone--ignored.

 

billie, I understand what you're saying. But here's what I'm saying: in any part of life, time is always a common denominator. In other words, it doesn't explain anything. What happens during the time? As the example I gave earlier with a patient who has a broken arm, take a population of people who have had a broken arm that is now healed, and you'll notice time is a common factor. So does that mean if a patient goes to a doctor with a broken arm, the doctor is supposed to just say, "Give it time"? Absolutely not!

Some people might naturally habituate. Great. But there are those who are suffering who need help now. Dan says he didn't have time to wait either, but I beg to differ. Why? Because he's still alive. The person who commits suicide (and we just had a story about that recently) is the one who truly does not have time. Or the person who has had tinnitus for decades--exactly how much time is that person supposed to have left?

And here's what gets me about Dan Turner's last post, he said:

"I think some docs have poor manners in the regards of tinnitus. I know my guy near me gave me the magic...."you'll learn to deal with it..."

So he hated that reply from his doc, but yet, that is exactly what this "Just give it time" line is. I don't know, would it have sounded any better if the doc had said, "In time, you'll learn to deal with it"?

 

I noticed that too. Many of us are hoping that within the next 5-10 years we'll have a cure or at least an effective treatment. But yet, are we just repeating the history that Dan went through?

 

Yes Matt--it makes it hard to hold out any hope for a cure or a really effective treatment. The treatment they give the American Veterans is another version of CBT. Although CBT helped me, it is just management --not a cure.

I'm habituating and I'm much better than I was but I am not really thinking about myself. I can live with the T if it doesn't get worse and I keep habituating, but I feel for our young members.

 

I feel the same way. CBT and my Christian faith have been instrumental in helping me habituate. In fact, most of the time when I hear my tinnitus, it doesn't bother me, and when it gets louder, I just notice it and then distract myself with something else. But still, there are times when it does get to me.

But, by CBT, support of my friends & family, and the prayer from others, it has helped me deal with it. If it were just left to "time", then I don't think I would be nearly as well off as I am now.

As for cures... well, eventually there will at least be effective treatments. But I don't think it is ever really possible to know when that "light" will be switched on, unfortunately. But it sounds like retigabine is working for some, and I would imagine that there are other drugs that are in the pipeline.. I haven't looked into it too much, but AM-101 seems to have everyone else's attention, and then there is that inner-hair cell restoration thing. So I do believe that eventually it will happen... I will say though that I have habituated enough to where I am not obsessed with a cure. But it took work on my part to get there... it wasn't a passive process as some people claim. I had to practice my CBT, and constantly dwell on the important things of life, rather than my T.

 

@MattK
Referencing the recent incident involving someone who decided to end their own life is more complex than just saying he did it bc of T. Yes he had T but he also had severe ear pain and several unsuccessful related surgeries. His health was a compounded issue and thats extremely unfortunate. So please lets be mindful of mentioning those incidents loosely bc it has the impact to send a new sufferer, who might read your comment, into a deeper hole.

 

@Dan Turner
Thank you. You have been trought this for a far longer time than me and veterans advice is aways helpfull. Still I will try some treatments, maybe I will cross a line or two, who know something might work for me. I am 22 years old and at this age getting such condition is a big blow. I am just to young to accept it at this point and mine is not acoustic trauma so I still hope that it can be reversed. The bad thing is that, hope is the greatest evil...

 

And I hate throwing that item down on the table. 15 years is a long time of no-cure....but 15 years is also a long time for science to adopt the obvious ills, woes and huge population of tinnitus patients. I suppose that the numbers of legit developers is huge today by comparison to the few efforts when I first realized my condition.

Because of the huge potential of clients....it brings out the scammers. I noticed a parallel between a group being discussed from Australia and a group that is touting a temporary cure in Scotland. The owners/CEOs are BA's first and scientists second....and they seem to belong to conclaves of Entrepreneurs that pay rent to a common address of scientific types that are always re-inventing the same wheels that have been in place for 100 years...but now using hot topics devices that are "in demand" of the less than scientific market. The Scottish group is cited in Bloomberg BusinessWeek as the "Corporate Headquarters" for Somtus in a recent filing for the corporate owners (which there are only 2)....however, Somtus is not posted as one of "their" graduate companies.

The rest of the graduate companies pander things like estimating programs for builders, project management for companies, determine your carbon dioxide output from your surroundings, etc.etc. Pretty much off-the shelf stuff that are more business accounting and time management templates of existing MS programs; however they're affiliated with this group looking for start up money from folks that don't know any better.

The Australian group is basically using the same pay for audio files product as Somtus. But it's being debated herein T-Talk...and defended.

While we're waiting for the cure....it needs to be considered that if 1 in every 6 people will appear with Tinnitus, it is a huge market....worldwide. If any one of these baloney groups gets a fraction of that potential for $20 or $30usd a month....take the cash, close the shop and run.

I can't emphasize enough that these parasites have little heart in them for YOUR condition. Make big splash...make big cash and move on. Rather than these two examples be affiliated with legit science and medicine....they're simply a PO Box at a entrepreneurial beehive. The purpose of that beehive is a) rent space, b) take a piece of the action for those that have a product to sell. a) and b) gets your "company" affiliated with some lofty name group that attempts to affiliate with colleges....or a college branch in name only.

These are the guys and gals that are looking for desperation, panic and anxiety in large numbers....which would be Tinnitus sufferers in general.

It's my experience that I hope to pass along and hope that youse guys don't fall prey to these Remora that will latch on to you. It's not impossible to track down and separate the chaff from the wheat. I did NOT do my due diligence in the first few years of Tinnitus....I only hope that some of the above will raise and eyebrow or two with regards to a intended expense. I could have bought a car with my cash outlay to confirm that...."Mr. Turner....you appear have Tinnitus in one ear."

If I had gone the hyperbaric chamber route as proposed....I would have lost enough money for a reasonable down payment for a house. There were many other attempts to separate me and my cash....but you get the drift. I'm not a Tinnitus expert....don't play one on TV.....I'm just one of the gang imparting my past experiences. I can laugh at myself today....but I would never minimize what you guys and gals are dealing with....I only hope to spare you the same bad experiences.