I'm Fine — Tinnitus Is Basically Not a Thing Anymore

[DamagedJoe]

I have had tinnitus and hyperacusis for six years. It took me four years to feel normal again. Then I made the mistake of going into a bar and a club, even though I was wearing earplugs, and my condition became much worse. Only now do I realize that I was basically free from tinnitus and hyperacusis for the past few years.

Be careful when you start to feel normal again. That is often when the worst mistakes happen.

I read your story, and it sounded very similar to mine. This feeling of having seriously harmed myself out of stupidity… it is truly terrible. The guilt, the remorse — I no longer feel like myself. I have lost a part of who I was. I am no longer fully present in my relationship. I am so sorry.

 

[AfroSnowman]

It seems like you do not have hyperacusis or noxacusis.

Some. But I'd probably consider it mild to moderate, and fortunately, I only experience it in specific situations—like when a sound briefly hits the pain threshold. For example, a plate crashing or a particular noise from my work computer during Zoom meetings. It's not something I deal with constantly, more like a second here or there.

Unfortunately, I have moderate hyperacusis to some of my tinnitus sounds. And when it repeatedly hits that pain threshold inside my own head, with no way to escape for hours or even days until the cycle breaks, it can be exhausting to the soul. But maybe that's what feeds into my "it's going to do what it's going to do, and I have no control over it, so I might as well go for a motorcycle ride" kind of philosophy.

 

[delta784]

I read your story, and it sounded very similar to mine. This feeling of having seriously harmed myself out of stupidity… it is truly terrible. The guilt, the remorse — I no longer feel like myself. I have lost a part of who I was. I am no longer fully present in my relationship. I am so sorry.

Same.

 

[kingsfan]

I fall on the side of living life. I have had tinnitus for six years at a severe to catastrophic level. I have learned to function in this world at a diminished capacity and do not waste time mourning the brain I used to have compared to the one I have today. I go out and do the maximum I can in this state, accepting that it is not the same as my pre-injury state.

One thing that has remained true with my tinnitus is that it often stays at a 10 out of 10, with some blessedly milder periods that last a couple of hours, during which it drops to about a 7 out of 10. This fluctuation has never been connected to anything in my life. Whether I get good sleep or bad sleep, whether I am exposed to noise or remain in protective silence, it simply does what it does, and I have no control over it.

With that in mind, I take earplugs but live life. I go for motorcycle rides, visit restaurants, listen to music, or fly in planes. Sometimes I forget my earplugs, and in the end, it makes no difference at all. Even if an event makes it worse, all that means is that it will be at 10 out of 10, which is my baseline state about 70 percent of the time anyway.

To quote the late great Kris Kristofferson, "Freedom is just another word for nothing left to lose."

I feel like if one could "will" it away by "balancing the autonomic nervous system," you would already be better. I think it's completely out of our control. Those who improve often believe they played a constructive role in their recovery, but in reality, it's more likely due to chance and circumstance. The ones who are going to get better will, even without any specific intervention.

My goal has never been to fully recover, only to live life to the fullest without further deterioration. But even that seems out of our hands. More than anything, I want to say "forget it" and go for a motorcycle ride, but I know my tinnitus wouldn't just return to its usual terrible state—it would become something even more terrifying. Then again, I'm not quite at the same catastrophic level as you, at least not yet.

@AnthonyMcDonald's story does give me some hope, though. I believe he was the one who kept getting worse over a couple of years and then, remarkably, it just stopped. I think he even experienced some improvement and can now travel and enjoy life.

 

[object16]

Oddly enough, I read the success stories, and I'm thinking, okay, it can happen. If it did happen, how did it happen? The common advice is "don't worry, it will go away," but clearly something else must have occurred—because it's not going away for us. Why?

I'm an actual pathologist, specializing in human pathology, the study of disease and how it develops. It's a deeply involved field. You go through medical school, do an internship, then another five years of specialization. I've completed 14 years of primary and secondary school, followed by 12 more years of intense post-secondary training, the equivalent of post-doctoral study. That, in itself, doesn't mean much—except that it shows I've been trained to search for clues and mechanisms.

Recovery has to happen somehow, and we have so many cases where it clearly doesn't, so why is that? It's not that we lack strength or the right attitude. There has to be something else going on.

My research focuses on steroids. I've heard of people taking steroids for acute tinnitus—sometimes something beneficial happens, sometimes nothing at all. That's a clue.

The person I used to work with was also involved in steroid research, years ago in Oxford. But I'm the only one currently active. I've got severe tinnitus, and I'm using myself as a test subject in my own steroid studies. No ethics committee is required when you are your own subject.

I work on plant-based steroids—specifically how to prepare them in rich, absorbable quantities. Many plant-based steroids just pass through the system without absorption, so buying something in a bottle is not something I believe in.

There is solid research showing that progesterone promotes the synthesis of neurons. Healing, in general, involves neural plasticity. The brain is constantly remodeling itself. And yet we also know that women, who have abundant endogenous ovarian steroids, still suffer from severe tinnitus. So my research is currently at a dead end. But there's no point, as a researcher, in giving up—until the researcher is dead and buried.

So why did I write this? Maybe just to put it out there that you've got a real researcher with a lot of schooling and experience who is in bad shape, but still working hard on behalf of everyone. I don't have much to report yet, except this:

My colleague in the next office is all about discipline and routine—eating healthy, exercising, and trying to get adequate sleep. As for me, I just got up in the middle of the night. So what did I do? I made some oat bran, went on the elliptical for 16 minutes, watched a podcast, took my medications, and went back to bed. Maybe I'll get some sleep, maybe not. Regardless, I'm doing my best to get up on time, show up for work, and answer my calling.

I've also got a problematic molar in the back that has had multiple fillings over the years. I called the periodontist yesterday and asked for a referral for extraction, bone graft, and implant.

I'm working on all of this, for myself and maybe for others. There has to be an answer. I'm not giving up. And if it comes to that, I'm determined to go down fighting.

 

[AfroSnowman]

I feel like if one could "will" it away by "balancing the autonomic nervous system," you would already be better. I think it's completely out of our control. Those who improve often believe they played a constructive role in their recovery, but in reality, it's more likely due to chance and circumstance. The ones who are going to get better will, even without any specific intervention.

My goal has never been to fully recover, only to live life to the fullest without further deterioration. But even that seems out of our hands. More than anything, I want to say "forget it" and go for a motorcycle ride, but I know my tinnitus wouldn't just return to its usual terrible state—it would become something even more terrifying. Then again, I'm not quite at the same catastrophic level as you, at least not yet.

@AnthonyMcDonald's story does give me some hope, though. I believe he was the one who kept getting worse over a couple of years and then, remarkably, it just stopped. I think he even experienced some improvement and can now travel and enjoy life.

Full disclosure: I was having a "good" tinnitus moment last weekend but really wanted to go for a ride. I was afraid the ride might make it spike back to its maximum level and spent an hour fixating on that possibility, especially considering the comments I had made on this board. Eventually, I decided to go out for a spirited ride that lasted a couple of hours. Thankfully, it didn't make my tinnitus worse, and it was good for my soul.

 

[delta784]

Oddly enough, I read the success stories, and I'm thinking, okay, it can happen. If it did happen, how did it happen? The common advice is "don't worry, it will go away," but clearly something else must have occurred—because it's not going away for us. Why?

I'm an actual pathologist, specializing in human pathology, the study of disease and how it develops. It's a deeply involved field. You go through medical school, do an internship, then another five years of specialization. I've completed 14 years of primary and secondary school, followed by 12 more years of intense post-secondary training, the equivalent of post-doctoral study. That, in itself, doesn't mean much—except that it shows I've been trained to search for clues and mechanisms.

Recovery has to happen somehow, and we have so many cases where it clearly doesn't, so why is that? It's not that we lack strength or the right attitude. There has to be something else going on.

My research focuses on steroids. I've heard of people taking steroids for acute tinnitus—sometimes something beneficial happens, sometimes nothing at all. That's a clue.

The person I used to work with was also involved in steroid research, years ago in Oxford. But I'm the only one currently active. I've got severe tinnitus, and I'm using myself as a test subject in my own steroid studies. No ethics committee is required when you are your own subject.

I work on plant-based steroids—specifically how to prepare them in rich, absorbable quantities. Many plant-based steroids just pass through the system without absorption, so buying something in a bottle is not something I believe in.

There is solid research showing that progesterone promotes the synthesis of neurons. Healing, in general, involves neural plasticity. The brain is constantly remodeling itself. And yet we also know that women, who have abundant endogenous ovarian steroids, still suffer from severe tinnitus. So my research is currently at a dead end. But there's no point, as a researcher, in giving up—until the researcher is dead and buried.

So why did I write this? Maybe just to put it out there that you've got a real researcher with a lot of schooling and experience who is in bad shape, but still working hard on behalf of everyone. I don't have much to report yet, except this:

My colleague in the next office is all about discipline and routine—eating healthy, exercising, and trying to get adequate sleep. As for me, I just got up in the middle of the night. So what did I do? I made some oat bran, went on the elliptical for 16 minutes, watched a podcast, took my medications, and went back to bed. Maybe I'll get some sleep, maybe not. Regardless, I'm doing my best to get up on time, show up for work, and answer my calling.

I've also got a problematic molar in the back that has had multiple fillings over the years. I called the periodontist yesterday and asked for a referral for extraction, bone graft, and implant.

I'm working on all of this, for myself and maybe for others. There has to be an answer. I'm not giving up. And if it comes to that, I'm determined to go down fighting.

Yeah, I took steroids at the onset, and they damaged my ears and brain. I don't believe in science anymore.

 

[Strife_84]

I read your story, and it sounded very similar to mine. This feeling of having seriously harmed myself out of stupidity… it is truly terrible. The guilt, the remorse — I no longer feel like myself. I have lost a part of who I was. I am no longer fully present in my relationship. I am so sorry.

Yeah. It took me many years—and many tears—to find myself again.

After my injury, I found new hobbies and went back to school to study for a new career that my ears can handle, and where I can use my creativity.

Strangely enough, tinnitus made me realize that we only have one life, and how terribly fragile we are.

I had to change everything. I had to give up hobbies, and I even had to change the kind of music I listen to. I really became a new person.

It will take time. It will not be easy. But do not give up.

This is a terrible condition. Be kind to yourself. I still get angry with myself sometimes, but in the end, what good does it do?

We cannot go back in time. We cannot change what happened. It is a waste of energy. But it is also completely normal to feel that way.

 

[Peter Q]

You are completely ignoring everything I have written.

I am not suggesting a four-day rave on the first day. What I said is that you need to balance your nervous system and gradually reintegrate.

Honestly, you might want to give it a try.

I agree. Balancing and reintegrating the nervous system is what it's all about. Stress, worry, anxiety, and similar states create a divided self. Let go, and let things be.

 

[Tom Cnyc]

I agree. Balancing and reintegrating the nervous system is what it's all about. Stress, worry, anxiety, and similar states create a divided self. Let go, and let things be.

It took me years to accept that many of the issues I've experienced were tied to nervous system dysregulation. At first, hearing that was upsetting, both for me and for others. But in the end, coming to terms with it has been empowering.