To Whomever Needs Some Words of Hope — Tinnitus Is Only a Noise

Life is a series of neutral events that happens to us and it's your reaction to the event that makes it positive or negative. It's why two people could be in the same life altering accident, both become quadriplegic and one person could thrive by thinking to themselves "Thank God at least I'm alive, I could be dead right now" and the other person could spiral into a fit of depression because they think "My God, my life is over now".

Would you rather be in this guy's shoes but tinnitus free?

The Man in the Iron Lung

He managed to write a book and go to law school and become a lawyer while living in an iron lung his entire life, and here I am getting upset about a harmless noise in my head so I always try to keep that in perspective when I'm having a rough day.

 

I want his attitude for sure.

 

Do you remember the monk that used self immolation to protest the Vietnam government? He lit himself on fire in the street and sat absolutely still in silence as he burned to death.

Burning Monk: Vietnamese monk who immolated himself against Ngo Dinh Diem

He was able to experience the pain but he didn't allow himself to suffer from it. The analogy is like being able to sit beside the river and watch it flow by rather than falling into the river and being swept away by the current. The mindfulness based stress reduction program has helped hundreds to thousands of people find relief from chronic pain. Read my past posts, it's not like it has been a walk in the park for me. There was a point that I didn't want to go on with life and I've come a long way since then. I drop in here from time to time to try and share what has helped me on the path to healing but the negativity here can be pretty draining and I think more people should take breaks from here because all the negative thinking only reinforces the mental thought pathways that prevent healing.

 

Exactly. If he can have the attitude & mental fortitude to overcome his condition and not let life get him down, it means I can do the same.

 

No, I was on high doses of NSAIDs and used my kitchen blender a couple of times per day for a few days in a row and that's what gave me tinnitus. A decibel meter showed my blender got up to 105 dB which is the same level as a power tool.

 

Wow, that’s crazy. Have you had any improvement?

 

The tinnitus has definitely improved some, maybe 50% but it's still there all the time, I haven't habituated. I've come to realize that the anxiety disorder I gave myself is the problem and not the tinnitus. I classically conditioned my brain to treat the tinnitus as a threat so my attention has been locked on to it. Meditation has been one of the biggest reliefs for me and when I get a few good meditation sessions in it really backs off the tinnitus due to the anxiety.

 

What kind of meditation? Any links?

 

Yes, I remember that monk's horrible way of protesting but I do not really understand what kind of point you are trying to make. If it is something the like of "suck it up and get on with it" I dare you suggesting that to a burn victim or a person who is TG.

I agree that misery loves company and that it is easy to forget the positive things in life when there is so much of the opposite to complain about. However, by arguing the way you're arguing you are playing right into the hands of all the people who already far too often shrug off all things tinnitus because "an invisible illness can't possibly be all that grueling and painful".

I'm not much of a complainer myself and get annoyed rather quickly by people who do nothing but, and yet suggesting a whole community better gag themselves because it shows strength of character, can't be the way to go about things either.

I guess, we'll have to agree to disagree in this, however "Hut ab!", as we say in German, for making it work for yourself.

 

Mainly mindfulness meditation but trying a variety of others. Jon Kabat-Zinn has some good stuff out there in books and YouTube lectures.

https://www.amazon.com/Full-Catastrophe-Living-Revised-Illness/dp/0345536932/

I also like Yongey Mingyur Rinpoche. He talks about making friends with things that distress you.

 

Thank you.

 

Well @Chad Lawton...

I can post pictures of smiling people with any number of diseases including my uncle.

A single photo meant for the public to get their moment of "feelsies" doesn't account to much as far as proof of viable living regardless of circumstance. Viable survival at best.

Suffering depends on many people and contexts. I have other chronic issues, but I always came back to the "good attitude" mentality thinking "at least I don't have [insert monster here]"

Well I got [insert monster here]. It's not a simple matter of "attitude" and the pull yourself by your bootstraps narrow thinking.

Given yours occurred from a short noise insult and NSAIDs (which you would need to take an absolute shit ton to do anything), I'd argue yours is mild at best (like mine "was", I recall the process of panic to acceptance).

It doesn't mean we should simply "accept it" and become complacent with the suffering, because otherwise the medical community will see that as precedent for being "not that bad".

It becomes life threatening, believe it or not, if things continue to worsen beyond your coping mechanisms. Being in a wheelchair I'd argue has a sense of closure with it that ever worsening macular degeneration or hearing loss for no reason does not, especially if the medical community isn't taking it seriously in order to prevent your spiral into disability if only someone had taken action.

Call it "attitude" if you wish, it's being ok with it because you learned to cope. You're lucky, because if it kept getting worse every week I guarantee you would not. You are likely one of the ones where it will fade to nothingness and you'll still go to shows, pubs, etc with protection because you got a glimpse of what "could be".

Hard to score with a moving goalpost.

Tinnitus is not only a fucking noise. It's a noise that robs you of the beauty of life... which some of us embellished in.

The only thing I'm angry at is getting this young, and only thing thankful for is not having it even younger, like some on here who truly are suffering.

It isn't their fucking attitude that's the problem, nor lack of "mindfulness", it's people like you promoting acceptance versus solving the problem.

 

I definitely need to start meditating. You have a fantastic mentality in your approach to tinnitus. Very informative posts on this thread.

 

No, your attitude is the problem. I was much like you at one point. I absolutely HATED my tinnitus. I thought to myself that I should never have to accept this torturous thing, that I'd rather be dead than listen to this noise the rest of my life. It's only once I forced myself to start accepting it and forced myself to try and make friends with it that I saw progress. I started loving/kindness meditation and I started to feel a little better about it each day. I'm still not 100% there but I'm much better than I was.

You keep using the "someone always could have it worse" argument. Yea, you're right, someone always has it worse. Someone could learn they are going to die in a month and it is their attitude that will determine how they live out the rest of their days. They can either wallow in depression and pity and live a miserable last month of their lives or they can get out there and make the most of it and try to experience everything life has to offer before the end. The choice is theirs.

Pain is inevitable. Suffering is optional. Until you're willing to change your attitude, it's a guarantee nothing will change for you.

 

I wasn't being sarcastic, I was being genuine.

 

Bravo, you truly are a Chad!

This sucks but we have to rise above it.

 

Have you actually talked to this guy? Whatever he achieved, I'm sure he would easily give it all up to be even 10% healthier.

Let me tell you. I got a doctorate with debilitating chronic illness and published with hyperacusis. I think about suicide every single day. I would burn my money, burn my degrees, clear my mind of all of my math knowledge, give up math for the rest of my life just for my hyperacusis to improve significantly.

Also, if you're going to preach about mindfulness, maybe actually explain the philosophy correctly. The "it's actually a good thing!" is a well known form of compulsion and thought neutralization that fails. From a book I own on OCD and general intrusive obsessions, the following example drives home my point:

Increased Frequency of Obsessions (Overcoming Obsessive Thoughts, by Purdon & Clark, pg. 43)
When you use neutralizing acts and compulsions, they come to remind you of the obsession, because they are so closely linked with it. For example, Juan [made up name in the book] had obsessions of stabbing his grandchildren and would neutralize these thoughts by constructing vivid mental picture of his grandchildren as healthy, successful adults. In one image, they would be all wearing graduation robes. Whenever Juan saw an article of clothing similar to those that his grandchildren were wearing in his "good" thought, the obsession would immediately come to mind. Unfortunately, when you try to suppress a thought, you actually become extremely sensitive to anything related to the thought, so the thought is easily triggered. Thus, compulsions, neutralizing, and thought control make you overly attend to anything related to the obsession, which in turn triggers the obsession. Hence you experience an increase in the frequency of the obsession.

--------------------------

What that excerpt is saying is that if tinnitus really bothers you and you try the "positivity" route, what will happen is you will build up frustration and then later become more bothered by the tinnitus. It is never a good idea to try to play free will mental gymnastics. If tinnitus sucks, the best that one can do is truly accept the burden of it. Granted, this obviously still isn't enough, as one can accept something and still live in misery, but the "it's just a sound" way of thinking is incorrect from a behavioral standpoint.

Actually, getting out a piece of paper and writing out one's worst thoughts and observing them, allowing them to feel the anxiety is a lot more effective. This is proven to be effective, by the way.

 

I'm actually convinced for people who habituate, some new neural paths are made, and the brain essentially changes its innate perspective on the sound. I don't believe this can be induced reliably by any mode of thought.

I'm also convinced for people for whom this has occurred, they retroactively attribute the changes to their own actions, creating the fallacy of agency, because it is more logical/comforting.

 

I think this is the same kind of gymnastics that Stockholm syndrome victims suffer from, but to each their own.

 

And if it is, I could care less as long as it works lol.

If I offered you a pill that would make you habituate to your tinnitus so that it didn't bother you and it had no negative side effects, would you take it? Or would you refuse and still say the medical community needs to fix it and you're going to let it bother you until they do?

 

Dude... don't give any of us your secret pill. Someone needs to protect you from yourself. You are sitting on a goldmine that could eventually liquidate into a boatload of money for hearing research.

 

It won't help hearing research but it sure can help a hell of a lot of people from suffering.

You guys are draining and depressing. I'm out of here.

 

Oh man. This took a weird turn. I'm all for trying to make the best out of a bad situation but for some people that's just impossible, saying everyone can is pretty cruel and denies their suffering.

I have some pretty good moments and some pretty bad too, right now I'm on a spike and like many here I don't see myself ever habituating to those. Mind over matter can only go so far.

 

I think people like to live in this pretend world where the mind and body are separate and in fact the condition of the body has no impact on the mind (but, at the same time, a bad mindset is why you are so sick you negative Nancy/Nathan). I am habituated, and I’d love to say it was from my willpower alone, but I’m suspicious that the fact my hearing is no longer wildly distorted and simple sounds like talking, music, and my fridge no longer inflict constant burning pain helped.

These days my biggest health concern is sleep apnea, which induces depression, anxiety, and difficulty to focus in many patients. How do you solve mental problems caused by a physical condition using your mind?

I agree that mindset is important but I don’t understand why we need to pretend it’s curative. Suffering is universal but that doesn’t make it irrelevant. I wish anyone reading this good luck to heal from or cope with whatever health challenges life has thrown their way.

 

Tinnitus is not just a noise. I hear it and “feel” it too as if my brained was squeezed and pierced with electricity.

I appreciate that some lucky ones with mild tinnitus might find mindfulness/meditation useful in some ways; but severe sufferers who fight every day not to take their lives don’t need any lectures on attitude. They need a concrete treatment.

 

Seconding this. The "feel" part is a little harder to pin down, but it's there. Like lasers through the head.

 

Really good points and I just want to add that we should all be wary of "inspiration porn" and survivorship bias. Yeah, there are some people in awful circumstances who have managed to achieve a lot despite it e.g the iron-lung man. And that's great. But there are so many others who suffer terribly and no amount of "don't let it hold you back will help" rhetoric for help. For someone with crippling hyperacusis, for instance, we are forced to limit our lives and activities out of self-preservation. What alternative do we have currently? Suffer increased pain and permanent setbacks by trying to push through that just makes life even more challenging.

 

I'm not sure if this is an American thing or more universal, but there's often a false belief that achievement = happiness or achievement = self worth. I'm glad you pointed out that a sufferer is just as much of a sufferer, regardless of their achievements.

Maybe this is a tangent, but there are so many stories of "person got X disease/injury and look what they achieved. Look at how inspiring that is!" Yeah, they never praise the person that had the mental discipline to know their limitations. I did the "hero" thing in grad school by pushing through and look where I am. How many people with hyperacusis do the hero thing only to see their condition worsen?

It kind of cracks me up (if it wasn't so sick) the way the Social Security Administration wants people with disabilities to push push push to be that tough, American hero. The ironic part is that they are actually increasing the odds of that person becoming significantly more disabled. Why fight tooth and nail to provide someone with a poverty-level income that could help their mental health and give them a better chance at recovery?

Anyways...

 

How are you doing?

 

I totally agree with you - I definitely think society fetishizes productivity and your self-worth is tied to your achievements. I think it's not just an American thing and is typical of late-stage capitalism lol.

I very recently had a situation in my own life where I had to grapple with this problem. I was about to be offered an entry-level job in a reputed firm where I live and they were pretty much ready to offer me the role on the basis of an interview I did pre-pandemic. My hyperacusis has improved but overall my ears are still pretty fragile and susceptible to flare-ups - artificial audio is still triggering and recovery is just generally slow lol. Anyway, I had a chat with this firm just to see what it would entail and I ended up just coming clean about this 'medical condition' that I have etc because I wanted to be as transparent as possible. They actually took it really well and were curious and accommodating, asking questions about how it affects me etc. I had been so prepared for it to go down a lead balloon so I was really heartened by their reaction.

Anyway, they thanked me for being upfront about it and said they would have to discuss - they contacted me later on in the day to say they would have loved to hire me but they were concerned about my condition worsening and felt that my health should come first. It would have been pretty full-on in busy office, working full-time. I actually totally agreed with them. They were super apologetic about it too. To be honest, it was a bummer because if it weren't for my health, I would have got the job. There's even a nagging voice at the back of my head that is berating me for it. But I also felt weirdly proud of myself for owning it and being able to admit my limitations and doing what's best for my health. It would have been far worse for me to not disclose, take this job on, and then miserably crash and burn.

It's so important for people know their limitations - I am aware that, in contrast, it can be good for people to go outside their comfort zones at times. But that doesn't really apply to chronic health problems like these where pushing a comfort zone can be a deadly mistake.

I don't know much about the ins and outs of the American welfare system but I can say that this sounds depressingly similar to disability welfare in the UK, where people have to jump through endless hoops and face scorn. I mean, we have free healthcare etc which is great but the disability benefits system is truly awful. This is why I'm a believer in stuff like universal basic income, although that's a conversation for another day.