Noxacusis: Mild? Moderate? Severe?

[FGG]

I don't think I quite realized how confusing noxacusis terminology is until I got it myself. It's been eye opening to say the least.

With tinnitus, I easily knew the brief period I had it severely was "severe" (could only be masked by a noise as loud as a hair dryer) and understand that it is "moderate" now without too much trouble with the terminology. I understand "moderate" is a sliding scale, too, and subjective but it's relatively easy to at least have an idea where you are I think.

Anyway, I assumed my noxacusis is mild because I am able to do most things with ear plugs and only wear Peltors when my neighbor is using her leaf blower or when I have to use packing tape (and I just go outside while my dryer is on, etc). I can even go to the grocery store with ear plugs without too much difficulty.

But I have heard it described that the need to use earplugs for a lot of the day, even at home, means it's "moderate" and not "mild" though. And the fact that I feel electrical pain (mild but consistent) when I talk on the phone at all, even at low volume which I have stopped doing completely (it took some effort with my hearing, anyway, so it's not important at the moment at least).

Anyone know of any way to measure scale in this? Or if it's even helpful to know in terms of prognosis (I would assume the more mild, the quicker recovery...)?

I always feel guilty putting my anxiety on others, but I'm very worried.

 

[100Hz]

I spent a long time trying to work this out as well because it quickly dawned on me how crap and effectively useless LDL tests are as there's such a huge sliding scale of symptom severity and all that test does is take a snapshot somewhere on that scale. I came to this conclusion.

Firstly, there is a degree of 'noxacusis causing' damage, whatever that damage may be. (Something special about the synaptopathy, extra ribbons etc. Something out of the normal scope of hearing loss only). I attribute this damage to how much my ears can take before feeling the symptoms of cochlea noxacusis i.e. what frequencies and duration of listening can be endured before ears get tired / fullness / TTTS / eventual setbacks (I'll leave trigeminal / facial neuralgia out if it for now because I think that's a separate secondary symptom that needs to meet certain conditions before a sufferer gets it as well).

After 2 acoustic shocks although the recovery* time was the same, approx 16 months, the second acoustic shock I believe gave me further damage as there is now less I can get away with than after the first recovery. (*Not true recovery but enough to become semi-manageable).

Secondly, there is a sliding scale from good to bad where bad is at your worst possible level according to your damage level, I hope that makes sense. This is where I think inflammation fits into the picture and to link it to the point above, the worse your damage, the easier this inflammation would be to invoke plus the longer it would take to reduce again. So say more noise is endured in a given day, then it will raise the symptoms slightly and if less noise endured for a while, they will go back down again. However, if setback threshold is breached then it will cause far more prolonged symptoms, I suspect due to a massive assault of inflammation. A third even worse scenario (if it applies) is a brand new acoustic shock which is a whole fresh injury.

As for the trigeminal and facial neuralgia, I believe this needs activation of the trigeminal nerve either by way of a middle ear event such as acoustic shock (which may in turn lead to easy repeat events if say the tensor tympani never fully recovers from a pull of tear), or perhaps even by a completely unrelated event such as trauma, dental work, ear-sinus infection, or drugs maybe even years beforehand, effectively leaving the trigeminal nerve sensitized but dormant. And however that happens, the dots then get joined up once the noxacusis inducing cochlea damage happens. And given that the trigeminal nerve innervates the cochlea which is now susceptible to inflammation by something as simple as sound it seems logical that this would make the trigeminal nerve very active. (A parallel theory is that type II nociceptors firing causes fresh middle ear overreaction-this is what I think a setback is). In other words it either happens in one go with an acoustic shock or may be 2 separate events that eventually become linked.

It's a bold theory but I kind of think it is valid as I do have noxacusis in both ears but only have trigeminal neuralgia on the left hand side.

So in terms of your question 'The more mild, the quicker the recovery', I would say yes definitely as my 'good' ear noxacusis is almost unnoticeable but I know it's there which makes me think it is truly mild in terms of the 'noxacusis causing' damage. My bad ear is fried though with a sensitized trigeminal nerve kicker. Its important to note that when you say mild, it means mild in terms of cochlea damage and not in terms of how you perceive your symptoms.

One final point on the middle ear plus cochlea damage scenario is that I think when they are both in state of damage and high inflammation it leads to a double vicious cycle in that the damaged middle ear continues to cause inflammation and trigeminal pain which in turn keeps the cochlea inflamed, which in turn keeps cochlea thresholds very low, which finally keeps local cochlea inflammation production high as well as the possibility of repeat middle ear over-reaction due to the lowered thresholds via the various nervous systems. I get tied up in knots thinking about the way it could loop round and round like this. It could explain why in the early days even a whisper is painful and it takes so so long to recover. The whole system needs to rest to begin to heal - in silence.

That's just my theory on it, hope it helps.

 

[FGG]

I spent a long time trying to work this out as well because it quickly dawned on me how crap and effectively useless LDL tests are as there's such a huge sliding scale of symptom severity and all that test does is take a snapshot somewhere on that scale. I came to this conclusion.

Firstly, there is a degree of 'noxacusis causing' damage, whatever that damage may be. (Something special about the synaptopathy, extra ribbons etc. Something out of the normal scope of hearing loss only). I attribute this damage to how much my ears can take before feeling the symptoms of cochlea noxacusis i.e. what frequencies and duration of listening can be endured before ears get tired / fullness / TTTS / eventual setbacks (I'll leave trigeminal / facial neuralgia out if it for now because I think that's a separate secondary symptom that needs to meet certain conditions before a sufferer gets it as well).

After 2 acoustic shocks although the recovery* time was the same, approx 16 months, the second acoustic shock I believe gave me further damage as there is now less I can get away with than after the first recovery. (*Not true recovery but enough to become semi-manageable).

Secondly, there is a sliding scale from good to bad where bad is at your worst possible level according to your damage level, I hope that makes sense. This is where I think inflammation fits into the picture and to link it to the point above, the worse your damage, the easier this inflammation would be to invoke plus the longer it would take to reduce again. So say more noise is endured in a given day, then it will raise the symptoms slightly and if less noise endured for a while, they will go back down again. However, if setback threshold is breached then it will cause far more prolonged symptoms, I suspect due to a massive assault of inflammation. A third even worse scenario (if it applies) is a brand new acoustic shock which is a whole fresh injury.

As for the trigeminal and facial neuralgia, I believe this needs activation of the trigeminal nerve either by way of a middle ear event such as acoustic shock (which may in turn lead to easy repeat events if say the tensor tympani never fully recovers from a pull of tear), or perhaps even by a completely unrelated event such as trauma, dental work, infection, or drugs maybe even years beforehand, effectively leaving the trigeminal nerve sensitized but dormant. And however that happens, the dots then get joined up once the noxacusis inducing cochlea damage happens. In other words it either happens in one go with an acoustic shock or may be 2 separate events that eventually become linked.

It's a bold theory but I kind of think it is valid as I do have noxacusis in both ears but only have trigeminal neuralgia on the left hand side.

So in terms of your question 'The more mild, the quicker the recovery', I would say yes definitely as my 'good' ear noxacusis is almost unnoticeable but I know it's there which makes me think it is truly mild in terms of the 'noxacusis causing' damage. My bad ear is fried though with a sensitized trigeminal nerve kicker.

One final point on the middle ear plus cochlea damage scenario is that I think when they are both in state of damage and high inflammation it leads to a double vicious cycle in that the damaged middle ear continues to cause trigeminal pain which in turn keeps the cochlea inflamed, which in turn keeps cochlea thresholds very low, which finally keeps cochlea inflammation high as well as the possibility of repeat middle ear over-reaction due to the lowered thresholds via the various nervous systems. It could explain why in the early days even a whisper is painful and it takes so so long to recover. The whole system needs to rest to begin to heal - in silence.

That's just my theory on it, hope it helps.

Thanks so much for your input and insight. There definitely is a classic inflammatory component to mine as Prednisone helped me immensely and decreased the maximum amount of pain I felt significantly. Unfortunately, however, now that I'm tapering off, I feel it creeping back up again.

I would definitely say that I have both cochlear and middle ear/TTTS involvement. And trigeminal (or facial nerve) involvement on both sides as my cheeks are just sore constantly right now (and varying involvement in other places).

This makes me wonder if the Prednisone was a good or bad idea because I might have worn plugs even more during that time without the steroid use.

I take your post to mean the fact that I have cochlea, middle ear, and trigeminal irritation on both sides to mean my case is not mild. I guess I assumed it was because I'm not restricted from much activity at the moment as long as I wear earplugs. Perhaps this is the wrong metric though, and that's more or less where my question was aimed.

What's weird is only my left ear was exposed to the loud sound (phone speaker all the way up right next to the ear canal but my symptoms are equal in both ears. This makes me suspect the majority of my problem (with this anyway, I have separate cochlear damage) is middle ear TTTS related.

 

[100Hz]

You're very welcome, and thanks for all your help in the past.

Thinking about it I can see these all being variable factors which is why the symptoms vary so much.

Level of cochlea 'noxacusis causing' damage
Level of cochlea inflammation
Level of self control around noise (I only just thought of this one but its important because 2 people with the same degree of cochlea damage would have different severity of symptoms if one of them was less careful around sound as they would be invoking more inflammation / type II activity etc.).

Then there is,
Whether acoustic shock / middle ear trauma has happened?
Whether trigeminal is sensitized or not
Level of middle ear inflammation

I'll throw a theory out there and suggest that various degrees of only cochlea damage spans a very particular symptom spectrum more inline with loudness hyperacusis and cochlea related symptoms only, however regardless of the degree of cochlea damage and once trigeminal and middle ear damage is involved it raises the symptom severity massively. I've always felt that the middle ear trigeminal neuralgia side of this is 95% of the worst of my symptoms.

 

[Zugzug]

I agree with the theory that "equal on both sides" points strongly towards TTTS. I think @100Hz makes an interesting case that inflammation makes TTTS more active as a protective mechanism, which leads to more inflammation.

As it always is, Prednisone is a mixed bag. Helps with inflammation, but probably doesn't help the brain with TTTS.

This seems to have "rest it like hell" written all over it.

As far "severity," I never know these days, as it completely depends on which circles we are in. I think if you have to wear earplugs regularly, even to go grocery shopping, that puts you in the major leagues. If I were you, I would wear Peltors everywhere for a while. Once the inflammation is down/gone, maybe there's some potential for TTTS desensitization. Until then, the reflex will just be too strong.

 

[100Hz]

I see what you mean about the protection. I guess in the early days it's hard to gauge but after a while I learned by trial error what I could get away with and not. One example is when I'm bad I know I'm bad because I can't leave my bed, then eventually I can do things with Peltors and earplugs till I just don't use them one day for a particular activity and realize I must be getting a bit better. Driving is another one, at worst I have to wear earplugs but then all of a sudden I just don't need them anymore (till next time). TV volume is another one, if I'm really bad it will be subtitles but then as recovery goes on the volume goes back on at 5 and eventually creeps up to about 8, when it's sometimes really good, then 10/11. I think the most important thing I learnt over time is to never take a chance because the margin for error to get a setback is so small.

I think it's such a personal thing and you have to listen to your body and learn to know what your limits are instead of being told 'you mustn't protect'. I don't think it's possible to overprotect though, maybe very acutely, but that's it. Sometimes my ears can go through several different states in one day where first they'll get tired and I think I'm heading for a setback, then I'll take a rest with Peltors for an hour, and then in the evening they become relatively bullet proof. It is so weird.

As @Zugzug said, I agree that Prednisone is a mixed bag. I've had some really good results with Prednisone and some that didn't do anything.

 

[FGG]

Question for those who have recovered or improved:

What path does that recovery take?

I would say I'm just as sensitive to noise (maybe even slightly more) as 6 or so weeks ago when this started but I noticed my pain isn't as bad.

In other words, the same sound consistently triggers pain but the intensity is reduced. I no longer have any periods where it would be uncomfortable enough to wake me up from full sleep, for instance.

Is this a good or neutral sign? Most people seem to report improvements in terms of less sensitivity so it's hard to gauge.