Nimble's Log

[WillBeNimble]

Well, figured I'd introduce myself. I have had tinnitus as far back as I can remember, I just didn't think it was tinnitus, but the base level electrical noise we all hear in a quiet room. Recently, due to my dunderheaded choices, it's gotten worse. Luckily I can still escape it in the shower.

I just wish I could tell past me what not to do, and how delicate and precious human hearing is. It's like we never mention that or care about it till it's too late.

My main thing is sleep. I have such a hard time sleeping at this point. I'm taking Melatonin, but it's not helping as much as I'd like. Really, I'm watching FX-322 now, because I'm hoping it can bring us all silence again.

 

[WillBeNimble]

I have been able to sleep better using a white noise machine. I can't pinpoint my tinnitus tone, so I think it might be on frequency that I've lost on the upper bands. I'm vainly hoping that FX-322 somehow repairs even higher frequencies where the person is deaf now, even though I know it really won't. At least it's not what it was designed to do. I just feel dumb from how this all happened, and if I had just known what I know now, I could have avoided it all. If our systems were more caring to tinnitus sufferers, and actually stressed the importance of hearing, I wouldn't be here right now.

It gets hard. I don't really have a good family life or support network with family. I'm going to try and reach out to my mother. It just sucks, cause at 28, I shouldn't be dealing with constant ringing in my ears. Instead, I'm dealing with this dumb noise for what will most likely be at least the next 10 years, if a cure comes out. Maybe I'll get lucky and fx-322 will work like I hope, maybe it will be a wake up to the brain to fix itself on these higher frequencies when other cells reconnect. Maybe it will resolve itself in 3 more months? I don't know. It just wears me down.

 

[FGG]

I have been able to sleep better using a white noise machine. I can't pinpoint my tinnitus tone, so I think it might be on frequency that I've lost on the upper bands. I'm vainly hoping that FX-322 somehow repairs even higher frequencies where the person is deaf now, even though I know it really won't. At least it's not what it was designed to do. I just feel dumb from how this all happened, and if I had just known what I know now, I could have avoided it all. If our systems were more caring to tinnitus sufferers, and actually stressed the importance of hearing, I wouldn't be here right now.

It gets hard. I don't really have a good family life or support network with family. I'm going to try and reach out to my mother. It just sucks, cause at 28, I shouldn't be dealing with constant ringing in my ears. Instead, I'm dealing with this dumb noise for what will most likely be at least the next 10 years, if a cure comes out. Maybe I'll get lucky and fx-322 will work like I hope, maybe it will be a wake up to the brain to fix itself on these higher frequencies when other cells reconnect. Maybe it will resolve itself in 3 more months? I don't know. It just wears me down.

I'm a bit older than you (42) but I'm in a similar boat in terms of lacking family support. Even though with family support, it's still so isolating and terrible, without it, the loneliness feels even more crippling.

Sounds like you are still in the acute phase. The loudness in many/most cases will diminish for most people. Protect your ears and you stand a decent chance of being one of the lucky ones.

 

[WillBeNimble]

I'm a bit older than you (42) but I'm in a similar boat in terms of lacking family support. Even though with family support, it's still so isolating and terrible, without it, the loneliness feels even more crippling.

Sounds like you are still in the acute phase. The loudness in many/most cases will diminish for most people. Protect your ears and you stand a decent chance of being one of the lucky ones.

Thanks FGG. It's been going on for roughly 2 months now. Yeah, it's pretty isolating, even if you get understanding family. I hope you're right, and that mine goes down. I have a sneaking suspicion it won't, because of the nature of mine, but I'll gladly be wrong on this.

In other news, after blowing my nose I got a new tone. This one really sucks, and I hate with a passion. I think that one is like 13ish,14ish kHz. Hopefully that one goes away.

 

[FGG]

Thanks FGG. It's been going on for roughly 2 months now. Yeah, it's pretty isolating, even if you get understanding family. I hope you're right, and that mine goes down. I have a sneaking suspicion it won't, because of the nature of mine, but I'll gladly be wrong on this.

In other news, after blowing my nose I got a new tone. This one really sucks, and I hate with a passion. I think that one is like 13ish,14ish kHz. Hopefully that one goes away.

Did an ENT ever evaluate you for or suspect ETD? It is very usual to get new tones from blowing your nose.

 

[WillBeNimble]

Did an ENT ever evaluate you for or suspect ETD? It is very usual to get new tones from blowing your nose.

The ENT said my ears looked fine. I didn't ask for them to look for an ETD. Maybe it was there before but I didn't really notice it?

 

[WillBeNimble]

I think I should go in for counseling at some point. Mainly for the grief and some cbt. Yes, I don't think it will cure it. But I do think it will help me weather the storm so to speak. Now the problem is just finding a place to do it.
Hopefully, after a Covid vaccine I can get an extended hearing test, as well. Hopefully it doesn't show me having gone deaf below 16.2khz, which is what I can hear up to. Hopefully my tinnitus tone isn't in the upper bands that I've lost.

I still just feel dumb for this. If my ears quite to a fan masking this, it would be a mercy.

 

[Zugzug]

Definitely protect your ears in the acute stage. You stand a good chance of the tones lessening.

 

[WillBeNimble]

Definitely protect your ears in the acute stage. You stand a good chance of the tones lessening.

Define protect my ears? Because the loudest I deal with is like 70db at work, and I don't want to overprotect so I end up with hyperacusis. My car might be 60db.

 

[Zugzug]

Define protect my ears? Because the loudest I deal with is like 70db at work, and I don't want to overprotect so I end up with hyperacusis. My car might be 60db.

If you don't feel like you are under protecting, then you probably aren't. People don't end up with hyperacusis because they over protect. They end up over protecting because under protecting gave them hyperacusis.

There are people on this forum with hyperacusis who are angry because they drank the "don't over protect" kool-aid. In my opinion, your best chance of improvement is avoiding difficult noises.

 

[Flyingsheep]

If you don't feel like you are under protecting, then you probably aren't. People don't end up with hyperacusis because they over protect. They end up over protecting because under protecting gave them hyperacusis.

There are people on this forum with hyperacusis who are angry because they drank the "don't over protect" kool-aid. In my opinion, your best chance of improvement is avoiding difficult noises.

I developed hyperacusis gradually from overprotecting, to the point where conversations hurt because of "s" sounds. Then I stopped protecting unless I was in an environment around 80db or louder, and hyperacusis gradually went away. I only get it a little bit in my right ear if it's a day where tinnitus spikes really badly. Just sharing my experience.

 

[Zugzug]

I developed hyperacusis gradually from overprotecting, to the point where conversations hurt because of "s" sounds. Then I stopped protecting unless I was in an environment around 80db or louder, and hyperacusis gradually went away. I only get it a little bit in my right ear if it's a day where tinnitus spikes really badly. Just sharing my experience.

I completely respect your experience, and honestly, I'm not surprised. To understand why I'm in the 'protect' crowd, it's really a cost-benefit analysis. Notice that you said you protected, started to develop hyperacusis, recognized it, and gradually undid it.

The opposite is far worse. Imagine if you under protected and could not undo it. This is why when I advise people to protect, I often include something about listening to your body. If protecting feels stupid or over the top, it probably is.

I have never found evidence that once someone develops hyperacusis, their neuroplasticity just stops. If there is evidence, I would be curious to read it. Granted, it may take some time. But I don't believe that if the ear is sending perfect signals to the brain, the brain won't eventually adapt to the stimulus thrown at it.

 

[WillBeNimble]

Welp, it's still here. Doesn't feel like it's really gone down, either. I just focus on work as best I can and move forward. The delay of fx-322 hurts, but I don't really know if it would have helped me. I just pray that I get to be one of those stories that ends with it either decreasing or going down. This is all really kind of terrifying to be honest, and I can't shake the feeling of shame for having done this to myself. I'm mainly keeping this as a log of how things are going, so that if it goes well, others can reference it. Not that there's really any thing special I'm doing. I do want to look into cbt, because having a better strategy for dealing with this and my shit show of a life would be better. I'm also conflicted about my efforts to raise awareness of hearing loss and T. There's a portion of me that worries that if I'm really effective, which I believe getting the big hospital in the area to take this seriously would be a huge boon, then companies might not take it seriously, which I don't want. So there's a selfish portion that wants more people to get it just so there's money behind it. Let's be honest though, no one deserves this.

 

[WillBeNimble]

Seems to have gone more from a tone to a hissing at this point. Hasn't really gotten quite from what I can tell. I'm just scared, but I try not to think about it. I really hope FX-322, comes out with positive results next year, and that it can help me if this isn't working to resolve itself.

It's hard being alone and dealing with this, but I realize I'm not alone. Others are going through the same struggle on here.