I Think I Was Looking at Tinnitus Wrong and You Are Too

[TieMinnow]

Reading around online when my tinnitus turned up in volume sent me into a deep dark hole where I could see no way of getting out. I was panicking I couldn't focus on anything other than that sound in my head. If you are suffering now I imagine you are the same way.

But stop that. Focus on what we are saying. There is a way out of that hole you're in. It will get better.

I went to a rock concert March 9th and the next day I only had a slight ringing just like every other one I went to. Except this time it wasn't as bad but at the end of the month the ringing had turned up quite a bit.

It was a week before my son's first birthday mid April when my tinnitus went out of control. It got so bad I couldn't understand what my kids were saying when they wouldn't talk in their high pitched voices. I went to the walk in and they flushed huge chunks of wax out of my ears. Surely that was the cause I thought. Afterwards I could hear things I could never hear before. And the tinnitus was nearly non existent. A few minutes after the cleaning seemingly harmless sounds were much to intense. People's voices would boom in my ears like explosions and actually make me flinch. I could handle that though.

After a few days my sensitivity went away and I could hear almost like before. Sounds weren't so harsh, and as my hearing started to level out again my tinnitus was back to increasing in volume. It then went out of control again. And I began to panic. Searching all over online for answers. I was shaking I was so scared of the sound and what would happen. What if I couldn't here my kids talk because of this screaming in my ears. What if I go mental?

But than I said no. No this sound is not going to control me. I will not let it get the best of me. I have work to do, I have children to raise and support. I will beat this. It was a rough week or two I could only hear the noise.

Slowly it began to quiet down. It was still there loud as ever but my brain wasn't listening anymore. And just like those other stories it only gets loud like right now as I'm writing this. And even though I hear it and it's intense, it doesn't bother me.

In my searching online just like you I ran across habituation and success stories like this. But I was telling myself there was no way I could habituate, the ringing is too much to ignore. I was wrong. Instead of listening to what people were saying I was telling myself how it was going to be and I was only telling myself how bad it was going to be. I used to smoke and chew tobacco. And before I quit I would think there is no way I can live without nicotine. How is it even possible? Than you quit and after a month or so you wonder why the hell you ever started in the first place. The same goes for tinnitus if you tell yourself it's going to beat you, it will. If you tell yourself you are going to beat it, you will.

I really hope this helps people. Trust us when we say there is light at the other end of this tunnel. It will get better. Keep in mind in your searching you are only focusing on the scary stories just like yours but don't pay attention to those. Those people are lost just like you. You don't get financial advice from your broke uncle. So don't take tinnitus advice from those who haven't beat it.

 

[Autumnly]

'Scary stories' have real people behind them. And not all of them are just 'lost'. Glad to hear that it got better for you but that isn't the case for everyone.

And saying that 'scary stories' just haven't beat their tinnitus...or that everyone will make it if they just tell themselves that, that's not true for everyone.

You can inspire others without looking down on severe cases.

(and apparently you only had tinnitus since March?)

 

[TieMinnow]

Have had tinnitus since forever. In March it went out of control. I was trying to keep my post as positive as possible. People can have discussions about tinnitus sure. It's real and it's terrible and those who are suffering are actually suffering. I wasn't taking that away from them.

You can talk yourself into whatever it is you want. You can tell yourself you can't beat it all day and guess what? You won't beat it. I wanted my post to be as positive as possible so they can see a different side. I know people who have tinnitus so intense they can barely hear people talk but they live their day to day life. Those people are in their 50s and have had it long before the internet. They didn't have thousands of people telling them they can't live with tinnitus. They just did and they are completely habituated today.

That's the point I'm trying to get across. The three owners of the company I work at said they all have it. They have money and they used a lot of it to try anything they could, lots of doctors, lots of meds, time and money, but they eventually just came to grips with the fact they had to beat it in their minds. Guess what? They run a large potato farm, stress through the roof at almost all points of their lives and the tinnitus hangs out with them all day and they smile and have fun.

And please don't insult me. I felt I insulted no one in what I said. Please don't say where I was or what was in my mind was minor because it was short lived.

 

[Autumnly]

Doesn't really matter if there are people who can live well with severe tinnitus, at the end of the day there are people who are severely debilitated by their tinnitus not by their attitude towards it. Saying that everyone can achieve that takes away from how debilitating tinnitus can be. Like I said you can inspire others without ignoring the fact some will not be able to live a normal life anymore no matter how much they try.

 

[Contrast]

Doesn't your tinnitus also come with poor hearing, noise induced pain, hyperacusis and middle ear muscle spasm?

You do realize you have to go the rest of your life with this stuff if medical science can't intervene one day.

 

[TieMinnow]

Yes I know this. When I was having a hard time dealing with this I would read that and it'd send me into a panic attack. I know it's probably not ever going to go away. I know it's probably going to get much worse. I'm only 26 and I've got a whole lot of loud noise exposure ahead of me. But like I said I won't let that fear get the best of me. We are in a world right now where we are seeing anxiety and depression rising rapidly. And it's that mindset that you can't overcome problems on your own you need drugs to do that. You can't drive down the road on a snowy day cause the weather man said you shouldn't. I won't let a bunch of parrots tell me my life is over. I'll know when I can't handle something I won't let people on the internet tell me what I can't handle. But that's the mindset today. And we can pretend we are helping others by saying it's all over but that's not help, that's torture.

 

[Contrast]

Yes I know this. When I was having a hard time dealing with this I would read that and it'd send me into a panic attack. I know it's probably not ever going to go away. I know it's probably going to get much worse. I'm only 26 and I've got a whole lot of loud noise exposure ahead of me. But like I said I won't let that fear get the best of me. We are in a world right now where we are seeing anxiety and depression rising rapidly. And it's that mindset that you can't overcome problems on your own you need drugs to do that. You can't drive down the road on a snowy day cause the weather man said you shouldn't. I won't let a bunch of parrots tell me my life is over. I'll know when I can't handle something I won't let people on the internet tell me what I can't handle. But that's the mindset today. And we can pretend we are helping others by saying it's all over but that's not help, that's torture.

You can at least stick around, donate to research every now and then and advocate for a cure.

You are just going through a phase of mental toughness, eventually this hyper masculine tough it out mindset will go away and you'll be back on an emotional carousel.

Your emotions will go from "I can manage" following the next month begging for a cure, and it will become a vicious cycle of competing emotions.

 

[TieMinnow]

I know many people who have it long before the internet and they all deal with it and live perfectly normal lives. It has nothing to do with masculinity.

 

[Greg Sacramento]

Tinnitus comes with different levels of disturbance that include both emotional and physical. Often with disturbance and with pain some level of improvement needs to happens for mind improvement.

When I first got tinnitus from ear syringing with hearing loss and it was as loud as a fire alarm with TTTS, hyperacusis and ear damage. It consumed my entire being. The TTTS and hyperacusis did settle down. By year four the damage to my ears healed, but hair cells and hearing loss damage remained. My tinnitus then dropped by 30%, but still loud. Only because of some tinnitus improvement was I then able to gain some adjustment.

Three years ago I developed high pitched physical tinnitus and I have serious physical pain in several areas. Unless I get some improvement my life will always be hell. I know that I will never see physical improvement.

It's not people with tinnitus who have not improved having a narrow mind, it's those saying that you 'will over can'.

 

[Jiri]

You are just going through a phase of mental toughness, eventually this hyper masculine tough it out mindset will go away and you'll be back on an emotional carousel.

Your emotions will go from "I can manage" following the next month begging for a cure, and it will become a vicious cycle of competing emotions.

Huh, sorry, but what kind of support is this? It's almost as if some members here didn't want others to get better.

 

[TieMinnow]

And it's funny all of the older folks I've talked to about it all said the same thing. Ya it sucks but you'll learn to live with it. That was not what I was looking for at all. And I kept asking more and more people about it. I was hoping to find someone who was suffering like me but I didn't find that. These people didn't create a nightmare like we do today they. We drive ourselves mad cause everyone else is. It's very sad. I've said all I can say about the matter. I really hope it helps someone. Maybe someone will listen to what I've said and get a different outlook on life.

 

[TieMinnow]

Jiri that's exactly what I mean. It's like no one who has tinnitus wants to get better and they don't want anyone else to get better. Scary world we live in today.

 

[Contrast]

And it's funny all of the older folks I've talked to about it all said the same thing. Ya it sucks but you'll learn to live with it. That was not what I was looking for at all. And I kept asking more and more people about it. I was hoping to find someone who was suffering like me but I didn't find that. These people didn't create a nightmare like we do today they. We drive ourselves mad cause everyone else is. It's very sad. I've said all I can say about the matter. I really hope it helps someone. Maybe someone will listen to what I've said and get a different outlook on life.

They just have tinnitus, not noise induced pain, loudness hyperacusis and middle ear muscle spasms.

 

[Contrast]

Huh, sorry, but what kind of support is this? It's almost as if some members here didn't want others to get better.

Because this mindset is why otological research is lagging. No one gives a fuck so no scientist gets research grants.

Tinnitus isn't the biggest problem, in fact it's the last for me. Noise induced pain is the worst issue.

Even in very mild forms pain from sound is disabling because it's always there ruining one's ability to communicate.

 

[TieMinnow]

You can at least stick around, donate to research every now and then and advocate for a cure.

You are just going through a phase of mental toughness, eventually this hyper masculine tough it out mindset will go away and you'll be back on an emotional carousel.

Your emotions will go from "I can manage" following the next month begging for a cure, and it will become a vicious cycle of competing emotions.

Thank you, you just proved my point. You just proved to everyone that the suffering they are going through can be overcome with the mind. You said it yourself.

 

[TieMinnow]

And ya I will donate. I will continue to pray for a cure. It's a very real problem. But one thing I won't do is shit on everyone who has it by telling them their life will be hell from now on. I'll actually help people, you just continue to make them miserable.

 

[TieMinnow]

And this BS bout hyper toxic masculinity is exactly that, it's bullshit.
This experiment we are doing today by telling people it's wrong to be strong is backfiring and you see it with the rise of anxiety and depression.

 

[Greg Sacramento]

Have you ever thought that you are doing damage to those with conditions that can't be improved.

 

[Jiri]

Because this mindset is why otological research is lagging. No one gives a fuck so no scientist gets research grants.

So you want more people suffering and be miserable, habituation = no success, so as to drive more attention to the 'otological research'?

Tinnitus isn't the biggest problem, in fact it's the last for me. Noise induced pain is the worst issue.

Well, sorry to hear about your noise-induced pain but tinnitus is the biggest problem here for most.

 

[Jiri]

I've decided... I'm giving this 10 years. My son and daughter will be 24 and 23 - old enough I think to handle my passing [or at least better equipped than they are now in mid-teens].

So tinnitus researchers... you have 10 years to either cure it or fix it. If not, I'm outta here. I'm in control.

This is a great gameplan.


What's the point of living with things like tinnitus, chronic pain and chronic health problems. Doctors won't even pay attention to research suggesting cochlear neuropathy + faulty neurological changes is the culrpit in most cases of tinnitus and noise pain.

It's very frustrating knowing research on hidden hearing loss, tinnitus and noise pain (otology in general) is lagging compared to other fields like cancer and arthritis. For example I tagged along with a family member to a arthritis specialist and while in the waiting room I realized there were advertisements for clinical trials and arthritis research in the office. They wanted to enlist people in clinical trials and find better biological treatments and eventually cures. Compare that to an audiologist waiting room, you aren't seeing any clinical trials for hair cell regeneration, mention of hidden hearing loss. Just hearing aids. (The status quo)

Some medical fields are far more advance then others, the cancer and arthritis field is far more advance. The visual snow community has tons of support. Tinnitus and hearing disorders are unsupported and under-funded in research. A lot of people have it but no one gives a damn about research. Just go to chat-hyperacusis.net and look how people are begging to try TRT they can't afford even though it has very inconsistent results and setbacks undo progress.Their desperation and viewing TRT as the holy grail is just sad.

The horse race for tacking inner ear disorders is still in the early stages so the only thing we can do is wait and see what the future holds.

See what I mean?

 

[Jazzer]

It will get better.

"I Think I Was Looking At Tinnitus Wrong,
And You Are Too."

I find the very title of your piece infuriating.
"It will get better."
You have no right to say this.

This generalisation is a lie.
Most severe sufferers have found that their Tinnitus has stayed the same, at best, and in many cases, got worse.
Mine has been very severe now for five years.
Prior to that, it was mild for twenty two years.
My noise is still at the same 'effing' level as the morning that it ramped up.

I will always tell the literal truth, as per my awareness video, not some bloody sickening Mary Poppins crap about:
"Just a spoonful of sugar makes the medicine go down."

Severe Tinnitus ain't polite folks.
It is one of the worst crocks of shit to ever visit this planet.
In fact I will say that I know of nothing worse than loud, eternal, hateful, internal head noise, which will probably last your lifetime.

Having said all that, and accepted the true severity of it, I can then go on to develop some effective coping methods, such as deep relaxation and meditation, which, far from being a cure, or even a treatment, in the true sense of the word, can actually help me to face my day, and come through.

No - it is not my intention to terrify sufferers, nor is it my intention to destroy people's attempts to stay positive, but I will not dish out false sugar coated platitudes.
Mary Poppins and her cosy advice just won't cut it.

But there is hope that good reliable coping methods can come to the rescue.
Rather I am saying:
"Yes - it is hateful SHIT - but please don't think that you are completely powerless - there are some good techniques which may help you to keep strong."

After my first devastating week, laying on a couch and refusing to move, sobbing my life away, my beautiful, gentle, tough-loving wife, sat next to me, stroking my troubled head, and said:
"Look - I know that this wretched thing is so hateful, so hard to bear.
Yes, it is a huge problem, but you must be even bigger.
I happen to know that you can do it,
and I will help you."

My tinnitus hasn't got any better,
I have got better at coping with it.

 

[Contrast]

So you want more people suffering and be miserable, habituation = no success, so as to drive more attention to the 'otological research'?

Well, sorry to hear about your noise-induced pain but tinnitus is the biggest problem here for most.

I agree for some people tinnitus is a big problem, but not my case.

I get this unexplainable facial numbness from sound that can make the right side of my face paraylized

My tinnitus rarely spikes and is mild because I rested and let my ears heal.

 

[Jiri]

I get this unexplainable facial numbness from sound that can make the right side of my face paraylized

I'm really sorry to hear that. I didn't know it can get this bad.

After my last dental visit my tinnitus is spiking really badly. I guess my mind is clouded a lot too.

 

[nimx]

And this BS bout hyper toxic masculinity is exactly that, it's bullshit.
This experiment we are doing today by telling people it's wrong to be strong is backfiring and you see it with the rise of anxiety and depression.

I'm sorry TieMinnow, I fear they won't listen because they can't understand. It's years I'd like to post my success story, but reading posts like your and the comments makes me change my mind every time.
Nowadays medical science has robed us of the importance of body mind links and emotional regulation in physical/biologic problems (though some are now recognized, from pain to chronic inflammation to real maladies) , they want to suffer and won't improve without a cure in the form of a pill or surgery. Don't waste your time, go ahead and grow, let them where they want to be, it's not their fault. Just don't have the fundamentals to understand. For some of them it will change but not for others, which is the same difference o between people suffering mental issues who recovery and people who will get worse waiting for a new pill on the market while suffering their entire life.

 

[Jazzer]

I can spot 'run of the mill' insulting crap from lightweights a mile off.

The difference in how much people will suffer is intensity and volume, not emotional fragility or better perception.

Just in case you heroes don't realise it - severe tinnitus can and does kill, on a daily basis.

Be thankful you do not suffer to this extent.

 

[emmalee]

I was trying to keep my post as positive as possible. People can have discussions about tinnitus sure. It's real and it's terrible and those who are suffering are actually suffering. I wasn't taking that away from them.

I do believe that you were trying to keep your post as positive as possible, @TieMinnow.

The truth is, we all suffer. We are in this together.

 

[Jazzer]

@TieMinnow
There are members on this thread who have desperately difficult lives because their Tinnitus is so loud and severe that those lives are so compromised as to be barely liveable.
Can you understand that?

Do you think telling such people that they are simply looking at their Tinnitus the wrong way, is going to help them, or hurt them?
In my opinion your approach is well intentioned but likely to frustrate and actually hurt the most afflicted.
I am sure that is not what you want.

Could Gabby Oultus' suicide have been avoided if she had only read and adopted your message of positivity.
She had euthanasia and left her two lovely young daughters behind, who incidentally both supported their mother's decision.
They could not bear to watch her suffer any further.

There is a huge disparity between those with mild Tinnitus and those experiencing 'hell on earth.'

Best wishes
Dave x
Jazzer

 

[Jazzer]

The truth is, we all suffer. We are in this together.

Yes we all suffer
- but to vastly different extents.

In all honesty - would you accept that or deny it @emmalee ?

 

[Jazzer]

If the truth is unacceptable, inconvenient, or viewed as confrontational, then I am sorry.

This subject is too serious to be palmed off with anything less than total honesty.

 

[emmalee]

Yes we all suffer
- but to vastly different extents.

In all honesty - would you accept that or deny it @emmalee ?

In all honesty, it is irrelevant what I think, Dave. What is relevant is that we all suffer with tinnitus and we all deserve the same amount of empathy and support from this community. In the year that I have been coming to this forum, not one person has ever made me feel unwelcome or made me feel that my opinion didn't matter. I will pay this forward, always.

I welcome any and all insights, from everyone who comes here with a story to tell. It isn't my place to judge, only to listen and perhaps offer some support.