Sharing a Story of Hope — My Brain Got Used to Tinnitus

This is a post a long time in the making. It's the story of my tinnitus - when it started, and where I am now.

This post will probably be more helpful for those who have recently been afflicted... and are really losing it. I'm not sure long-time sufferers will benefit as much, but that's not for me to know or to say for sure. Take from it whatever you will, and I hope it helps some of you, if even marginally.

I'm a mid-50s male. In January of 2017, I went to a concert. The music was loud, we sat near some massive speakers. I remember thinking this might not be good for my ears. But I didn't do a damn thing about it. Left the show with my ears ringing. Woke up the next day... same ringing. And the next day... and the next day... and the next day. I became worried. I did some internet research and found out that I likely had tinnitus. And I didn't like reading how difficult it can be to deal with.

A week after the onset of my tinnitus, I went to see an ENT. He said many cases will eventually recede on their own, or in other cases you might just get used to it. He also recommended I start on a three week course of high dose steroids to promote healing of the inner ear. I started the course of steroids, but had no improvement in the first few days. And that's when I started to crumble emotionally. I frantically searched tinnitus web sights, looking for some good news. And I did come across many success stories on various tinnitus sights. I tried to draw optimism from those stories, but I found myself focusing on the negative ones instead.

The next week (third week after onset) was brutal. Crying jags, depression, debilitating anxiety, and sort of comically, fits of donating money to various charities. I broke down to my wife and sisters when the noise of a family conversation was pounding my ears. I said, "I'm done. My life is over."

I went to see my GP about the anxiety. He told me steroids in high doses can frequently set off anxiety in people. He prescribed a limited number of low-dose Xanax. The Xanax was helpful. Over the course of a week I took as little of it as I could manage, which worked well. Just knowing that it was there if I needed it was good enough, but I was still wired way too tight due to the steroids. I talked to the ENT, and he instructed me to taper off them (important to taper!) four or five days earlier than the prescribed time. I just couldn't take the emotional high-wire, and he felt that the strong dose I had for those first 12 days or so may still be beneficial. As the steroids wore off my anxiety level diminished enough to function.

Afterwards I became highly sensitive to noise, looking to protect my ears lest the tinnitus get worse. Bought ear plugs, wore them everywhere. Watched the TV at such low levels that my wife turned on captioning because she couldn't hear the audio. I covered my ears when she ground coffee in the morning. I turned the phone ringer down to 1. I avoided movies, restaurants, people, and work as much as possible (I fortunately work for myself and have the flexibility to make my schedule to an extent.). I bought a white noise app for my phone and played it at night, as well as during the day when I worked on my computer. And I listened. Deeply, with intense focus. It's the first thing I did when I opened my eyes in the morning.Was the noise still there? Was it worse? Was it... different? Some days the noise was a high-pitched squeaking that sounds like a nearby boat prop when you're underwater. Other times the sound would be more of low pitched static.

After three months, I was convinced that the sound in my ears was not going away. I wasn't going to be one of the lucky ones. And then I accepted it. I had tinnitus. I didn't fight it anymore. I couldn't. I just didn't have the energy. It had worn me down. I told friends about what I was going through, and I was surprised that almost every one I talked to knew someone who had tinnitus, or they had it themselves. Knowing I wasn't the only one helped me deal. Slowly, I started going out socially again, albeit always with ear plugs at first. I started exercising again and working again full time. And then, despite my tinnitus hyper awareness, I started to have periods of time when I didn't think about it. Short periods. Like 5 or 10 minutes at first when I was distracted with work. Then those periods lengthened as time went by. I didn't choose to not think about my tinnitus. It just happened on its own.

Six months later... I still had the noises every day. One year anniversary... yep. Two years, yes. Three years, yes. And even now, to this day, over four years later, I still hear the noise if I purposefully pay attention to it. But miraculously, it no longer impacts me. I go through days and weeks without thinking about it. It doesn't mean I am not a little bit bothered by it from time to time. But my ankle and knee bother me from time to time, too. I'm mostly good. I am still slightly guarded about loud sounds around me. I cover my ears when an ambulance passes on the street. I wear earplugs when I mow the lawn or go see a movie, (try it- you won't believe how unnecessarily loud the sound is in a theatre) but that's just smart for anyone to do. You realize the world is a loud place once you become aware of the damage noise can do to your ears.

There was nothing I did therapeutically that I can point to that helped me get to the good place where I am today. Maybe the steroids had some impact, but that's hard to say. I think that my brain just got used to the tinnitus, which as I understand, happens in a fair number of cases. And I am unbelievably thankful for that. I know that the experience of long-term sufferers is far different from mine. I can share some of your pain, but know I cannot fully understand the challenge that you are up against. For others, especially those new to this club nobody signed up for, I hope my story provides you with some comfort for the future.

 

God bless you, Chris. Thank you for posting this. I'm approaching my two week mark and currently going through many of the aforementioned emotions.

Thank you for taking the time to post — this wishing you the best.

 

Thanks for posting this Chris. Glad to hear you’re doing well years later.

 

To Chris 135:

As with every habituation story I read, there is a distressingly patronizing component which is negated by various discoveries made about certain individuals' brains when they are exposed to traumatic events (and I define the sudden onset of loud tinnitus as classically fitting this definition).

There have been a number of fascinating discoveries about the extended effect that trauma has on nearly all important components of the brain.

Certain individuals are biochemically hardwired such that a traumatic event may disassemble that part of their brains that can mount a self-defensive coping strategy; it is no more reasonable to adjure them to "miraculously [no longer] let it impact them" than it would have been to urge Christopher Reeve to just "get up" the motivation to walk again.

Also, there can be a series of various traumatic events throughout a person's life can render this self-coping strategic mechanism useless, especially when confronted with this condition whose outsized, bizarre nature is beyond believing.

I began to research this when my ENT Doctor warned me that a lifetime of migraines could very probably have exhausted my brain's resources such that any habituation to tinnitus would be far harder than for others who were exempt from such maladies.

Perhaps there is even a genetic component that regulates each person's capacity regarding habituation.

We know that diagnosed OCD people can have difficulty in adapting to nearly everything.

It appears that the capacity to habituate may often have nothing to do with an individual's disciplined will-power, ability to rethink/reinterpret the "real" nature of tinnitus, or the ability to amass the determination to neutralize your reaction to it, etc.

 

Habituation. I think it is criminal that they teach sex ed in schools but don't teach about the dangers of hearing damage.

 

I hope you can habituate, because otherwise I can’t. I used to have daily panic attacks for years which screwed up my nervous system.

 

@Chris135 Thank you for sharing your story, I find it very comforting. I am almost at 2 years and was feeling generally much happier and able to tune T out, until three weeks ago when I had to go to the dentist for a filling.

Now I've really been set back and am struggling again. Are you able to go to the dentist without any adverse effects?

 

I very much feel for you and everyone else on this site who are suffering, but perhaps your post belongs in another discussion forum, such as “Support“ and not under “Success Stories”. People read these stories looking for hope and for many, they find it and it gives them strength to get through another day.

Having a post that negates the poster’s success story isn’t helpful. We can all be happy for @Chris135.

 

Thank you @Chris135 for sharing your story. It's motivating and useful.

 

I had filling work done at the dentist multiple times, no problems.

 

Thank you @Chris135 for your story of habituation success. It is very helpful and encouraging for people that are trying to achieve habituation.

 

Thank you @cruise That is good to hear. I'm happy to report that for me it was just a temporary spike and I'm doing really great again now.

 

@Mikkijan, great to hear!

 

I am very distressed that so many of you so painfully, utterly missed the points I made in my 06/28/21 entry.

As I mentioned, my ENT doctor warned me that a lifetime of migraines may have exhausted my brain's resources and capacity to habituate. In that respect my biochemical wiring that can achieve habituation is defunct; my situation is akin to trying to start a car with a dead battery.

Therefore, what in the F**K do you flagwavers for habituation want me to do?

I am clearly not suggesting that habituation is impossible for everyone; in fact, I envy those who are without such impairments that prevent a full realization of this.

But you are not taking into consideration that a whole host of brain-undermining events can make habituation infeasible no matter how committed a person is to improving.

Cut out your one-size-fits-all approach, and have a modicum of compassion and decency for those (who no fault of their own) are unable to conform to your expectations.

 

The stuff coming out on the pipeline gives us hope.

 

Hey Dave! I'm sorry I didn't comment earlier because I really liked your comment and the point you were making.

We are all wired differently based on genetics and upbringing. Someone who has experienced childhood trauma, abuse, panic disorder or has OCD or in your case, a history of migraines or other health issues may not "habituate" (hate that term) the same way as someone else. So I totally get what you are saying about "not one size fits all" and I'm sure a lot of people here do.

That said, I thought Chris's original post was good too. It was a detailed and very honest account of what it's like to get tinnitus and slowly learn to live with it. Some posts come across as "I did it so you can too, loser!" and really minimize people's suffering by saying "It's just a noise" etc. etc. etc., but Chris's did not.

So don't worry too much about people missing the point. I think people got it, and I'm glad you brought it up. Also glad Chris wrote such a thoughtful post.

 

To Wrfortiscue:

Thanks for the very best practical (and not chimerical) advice; this is what I need as a life preserver and a light-at-the-end-of-the-tunnel assurance.

Our Chicago Tribune stated that 6.6% of those who were hospitalized for COVID-19 developed beyond-moderate tinnitus;
(and, given the destructive nature of this virus, I can well believe it).

That is 6,600 new cases for every 100,000 hospitalizations (and let's remember that this is Worldwide). I have spoken to a few knowledgeable people in the medical field, and this COVID-19 will heartbreakingly create a whole new generation of tinnitus sufferers (as well as those reporting this condition from inoculations).

If necessity is in fact the mother of invention, these people have affirmed that every currently untapped research resource will have to be activated to remedy this (and I would like to believe that the 2021 level of sophistication in medical research could make a treatment breakthrough inevitable).

What are ENT Doctors' Groups doing? Seeing perhaps 20 such afflicted patients per day, notifying them that there is absolutely nothing that can be done about this, recommending a pointless MRI, charging $350.00 for the visit, and then trying to sell a $5,000.00 + hearing aid (which in certain instances will only worsen this).

How many newly afflicted patients will put up with this time and expense-wasting rigamarole before a real demand is made for an effective solution?

 

I'm sure there are good folks out there, like Prof. De Ridder or Dr. Rauschecker for example, who have been working on finding a solving the mystery. It may be true that the increase in tinnitus cases could create some more awareness for the cause. Only time will tell. Until then, we have no other choice than to adapt and cope.

As far as the medical profession is concerned, all their attention is now on COVID-19 and the vaccines, that's the goldmine for the big pharma, I don't think they will even care about the 6.6 percent. But enthusiast researchers would, although they seem to be sabotaged by Jastreboff who I have heard, controls tinnitus grants.

 

To Johan001:

1) Johns Hopkins has reported a total of 185,177,568 COVID-19 cases Worldwide; even if only a very small fraction report this condition, the numbers are still quite considerable;

2) There are at least 750,000 Veterans who are on disability because of this;

3) 11 million Americans have jobs that expose them to dangerous levels of sound;

4) One out of 7 Americans report this as interfering with their quality of life.

And let's extrapolate these numbers 2) through 4) to include the rest of the World.
These numbers are definitely large enough to make Big pharma realize the massive profit potential in developing an effective treatment.

My ENT doctor said that this will be an epidemic condition for the retiring Baby Boom generation.

Let's hope that finally, enough researchers recognize Jastreboff as a superannuated, outmoded practitioner from a bygone Era so that there can be real research towards a cure.

 

Yeah, I really hope that the industry will see the potential in cures/treatments. Apart from the retiring baby boomers, the whole new "AirPods" cohort is coming up. As I am more aware of it now, I'm really shocked to see how many people are walking in the streets with headphones on. Like, every 4th or so.

Kent Taylor donated a lot to a research, I hope this money will not be used to study mindfulness and TRT.

 

Just went for a quick walk: saw 13 people, 6 of which were wearing headphones...

 

So are you suggesting that nobody should be allowed to mention it at all, because it doesn't apply to everyone?

Nobody in this thread is putting expectations on you. Cruise is talking about his story.

 

To Tanni:

You proponents of habituation betray a truly neurotic defensiveness when it is suggested that any part of your commentary is simplistic because it does not take into consideration the limitations (discovered extensively by Neuroscience) on various individual's capacity to do so.

I am in fact very disappointed in both your and cruise's willfully ignorant refusal to recognize the fatuousness of this one-size-fits-all approach. I cannot recall cruise ever having emphasized in any commentary that "this method may very demonstrably not be feasible for everyone." His attitude is sententious and grandstanding, to wit: "I am so proud of myself for being so phenomenally successful in every humanly conceivable respect regarding habituation; what's wrong with the rest of you pitifully broken wastrels?" Did he ever care to imagine or empathically inquire about the egregious, life changing difficulties that I (and many others) experienced that made this level of habituation infeasible?

How in the hell did you make the transition from my comment about agreeing that "habituation is clearly not impossible for everyone" to "nobody should be allowed to mention it at all"? Recall that I also imputed my respect and recognition for the validity of habituation by saying that I envied those who were able to do so.

It also never occurred to either of you that in order to be functional with no castrostrophic psychological crises during my 7.5 years of this I of necessity had to construct my own unique, multi-faceted counseling program which was by definition a species of habituation. I do not, however, go ballyhooing it as a panacea that you should feel guilty and inadequate about if you cannot internalize it. Cruise's commentary reeks of far more than just "his story".

 

First I’d like to thank @Chris135 for sharing. I hope to be able to fully join the habituation club someday. So far 2 plus years and I’m still on that journey.

Which brings me to my main question, Dave do you have any citations for this theory of non-adaptation. I’ve been somewhat annoyed that I haven’t been able to really get to the point of full habituation. Now I do have very bad symptomatic tinnitus which clearly makes a difference in the ability to habituate but I had rather figured as a non-OCD, non-anxiety, highly resilient, non-depressive type that I would habituate as people generally do. Sadly I have not. I wonder whether your theory that repeated trauma can use up the capacity for the brain to adjust would explain my non adaption. I have lived a life of working in war zones, refugee camps, emergencies, and exceptionally high risk/stress situations to the point where I know that my chemical response to stress is different than normal people, let’s just say I am abnormally chill. Anyway do you have any studies at your fingertips that support that thesis?

 

I don't think the OP could be any more respectful towards the fact that 'habituation' is not possible for everyone - in fact, he doesn't even use the word. So yes, I have to conclude from your objection to it on multiple threads in this forum that you don't believe habituation, or any success story where an individual has managed to 'filter out' their tinnitus, should be mentioned at all. Because if you got quote one from quote two, then .

If you're going to respond, please be respectful and don't use insults. We ALL have tinnitus on here, and some of us also can't habituate.

 

I don't want to derail this thread as I think it's important for people who are looking for hope (typically people who are new to tinnitus and in the panicking stage) to be able to read positive stories in the success section, but if you wanted a study that proposes a reason some people can't 'habituate', you may be interested in the thread below:

Habituation Linked to Sensory Memory

Hope it's of interest to you.

 

My humble thoughts are:

1. As of today, there is no effective treatment or cure to lower the actual sound (not the anxiety response).

2. Some people can't habituate. Best case scenario here is when people suffer but cope. Worst case scenario here is when people can't cope and commit suicide.

3. Some people can habituate. Best case scenario here is when people don't even perceive their tinnitus. Worst case here is when people still perceive it but have no anxiety reaction to it.

4. Given point 1, as of today, our best option is 3. So, if a person reaches it, it is a success story.

5. We can still hope that point 1 will one day be fixed. However, at present, this option is not available.

I am sure no one would doubt that totally curing the sound would be the best option and work for everyone. But we don't have this option today. The best we have today is habituation, which does not work for everyone. Luck of the draw.

When two people get shot. One may survive, another one may not. It's a very individual experience. But the one who survived, is a success story.

 

The OP was very respectful in his 'success story' and I would like to think him for posting it. I think it's safe to say that every member of this forum truly has empathy for what any and all tinnitus sufferers go through - even if they don't have nearly as severe of a case.

Offering these story's truly gives hope to many people. If you are one of those who has zero hope for habituation, then maybe you could kindly not read the success stories and focus your attention on treatments, cures, support, etc... There's just no reason for these stories to create argument or division. Like it or not, we're all struggling together.

 

I wonder how many folks on Tinnitus Talk have achieved habituation? Would be great if there was a poll or consensus/study on it somewhere (I realize this wouldn’t capture everyone). I know I’ve seen the stat toted by some of the TRT camps that only 2-3% of people don’t habituate (doubt this is the case and obviously they’re biased with an incentive) but I’ve always been curious about that on this forum.

 

Shoot an email to Texas Roadhouse and thank for them their donation in honor of Kent and while you're at it, shoot the ATA an email to make sure it's used towards curative research.

Contact Texas Roadhouse to Thank Them for $734K Donation to American Tinnitus Association