Examining the Possibility of a Viral Cofactor with Noxacusis

[FGG]

Warning: long, speculative rabbit hole.

I came across this study last night and was intrigued (I'm going to tie this into noxacusis, stick with me):

Middle Ear Muscle Dysfunction as the Cause of Meniere's Disease

It suggests that hydrops is perhaps a consequence of middle ear dysfunction in Meniere's, and not the primary cause (akin to the amyloid/Alzheimer's theory) even though it is related to the symptomology.

And in fact, in the literature, some doctors are starting to successfully treat some Meniere's cases with middle ear tendonotomy surgery.

It further seems to fit since some people with Meniere's can go into remission by treating TMJ or neck instability, which are all linked to middle ear function.

Anyway, it got me thinking... people with Meniere's can also sometimes go into remission with anti-viral therapy alone (as in Dr. Gacek's work).

So how would viral causes be related to Meniere's if the middle ear were the culprit in at least some of that cases?

Through the Facial and Trigeminal nerves.

These nerves don't just receive sensory information, they control the normal function of the middle ear muscles.

I also considered that many people here report other systemic nerve issues while experiencing noxacusis: general nerve pain, interstitial cystitis (which can be viral), etc. and even stranger there are cases where things like acupuncture made it so much worse (which can cause local nerve irritation and increased viral shedding) and not just temporarily:

A Herpes Simplex Virus Infection Secondary to Acupuncture and Cupping

How would noise fit in? Overstimulation of the middle ear muscles and nerve irritation, which then leads to viral shedding.

Note: I am not making an over generalization that there is a viral component in all cases but it seems like it could be a co-factor in cases where there is a lot of pain spread over Facial and Trigeminal nerves especially.

And herpes viruses: (HSV-1, HSV-2, EBV, CMV Zoster etc.) reactivation are linked to stress as well which is often a co-factor.

Perhaps it's a self perpetuating cycle because the viruses thrive in oxidative stress but the middle ear responds to nerve irritation with oxidative stress. But it also points to a possible additional reason why something like Ebselen really may help some noxacusis cases (has anti viral properties as well).

This obviously would apply less to people without accompanying facial pain.

Thoughts?

 

[Lukee]

Warning: long, speculative rabbit hole.

I came across this study last night and was intrigued (I'm going to tie this into noxacusis, stick with me):

Middle Ear Muscle Dysfunction as the Cause of Meniere's Disease

It suggests that hydrops is perhaps a consequence of middle ear dysfunction in Meniere's, and not the primary cause (akin to the amyloid/Alzheimer's theory) even though it is related to the symptomology.

And in fact, in the literature, some doctors are starting to successfully treat some Meniere's cases with middle ear tendonotomy surgery.

It further seems to fit since some people with Meniere's can go into remission by treating TMJ or neck instability, which are all linked to middle ear function.

Anyway, it got me thinking... people with Meniere's can also sometimes go into remission with anti-viral therapy alone (as in Dr. Gacek's work).

So how would viral causes be related to Meniere's if the middle ear were the culprit in at least some of that cases?

Through the Facial and Trigeminal nerves.

These nerves don't just receive sensory information, they control the normal function of the middle ear muscles.

I also considered that many people here report other systemic nerve issues while experiencing noxacusis: general nerve pain, interstitial cystitis (which can be viral), etc. and even stranger there are cases where things like acupuncture made it so much worse (which can cause local nerve irritation and increased viral shedding) and not just temporarily:

A Herpes Simplex Virus Infection Secondary to Acupuncture and Cupping

How would noise fit in? Overstimulation of the middle ear muscles and nerve irritation, which then leads to viral shedding.

Note: I am not making an over generalization that there is a viral component in all cases but it seems like it could be a co-factor in cases where there is a lot of pain spread over Facial and Trigeminal nerves especially.

And herpes viruses: (HSV-1, HSV-2, EBV, CMV Zoster etc.) reactivation are linked to stress as well which is often a co-factor.

Perhaps it's a self perpetuating cycle because the viruses thrive in oxidative stress but the middle ear responds to nerve irritation with oxidative stress. But it also points to a possible additional reason why something like Ebselen really may help some noxacusis cases (has anti viral properties as well).

This obviously would apply less to people without accompanying facial pain.

Thoughts?

Pretty nice work. I think you are on to something but I wouldn't pin it 100% on viral. I am a firm believer that many chronic illnesses today are caused by viruses that remain latent and become reactivated or chronic. EBV and HSV are notorious for this and further to that point, I believe that traumatic events can lead to autoimmune disorders by way of reactivation of the viruses or shock to the CNS/ANS.

If what you're saying is true, then LDN should/might also work as an appropriate treatment for Meniere's and related disorders. My understanding is that it is in fact a viable treatment for many inner/middle ear issues and I have a friend who has seen at least 3 people relieve tinnitus and ear symptoms from using LDN. I was just going to post this in the LDN thread but the gist is that 2/3 did not have noise induced tinnitus and they had complete remission of all symptoms while the third was acoustic trauma and only partially recovered from tinnitus. I think this might lend evidence to your case but I'm not exactly sure how to link all the dots.

 

[FGG]

Pretty nice work. I think you are on to something but I wouldn't pin it 100% on viral. I am a firm believer that many chronic illnesses today are caused by viruses that remain latent and become reactivated or chronic. EBV and HSV are notorious for this and further to that point, I believe that traumatic events can lead to autoimmune disorders by way of reactivation of the viruses or shock to the CNS/ANS.

If what you're saying is true, then LDN should/might also work as an appropriate treatment for Meniere's and related disorders. My understanding is that it is in fact a viable treatment for many inner/middle ear issues and I have a friend who has seen at least 3 people relieve tinnitus and ear symptoms from using LDN. I was just going to post this in the LDN thread but the gist is that 2/3 did not have noise induced tinnitus and they had complete remission of all symptoms while the third was acoustic trauma and only partially recovered from tinnitus. I think this might lend evidence to your case but I'm not exactly sure how to link all the dots.

I don't think it's so neat and viral causes would not be the case for everyone.

As in Meniere's, TMJ treatment helps some people and anti-virals helps others.

I'm really addressing this as a co-factor to consider (one of many), especially if facial nerve pain is involved.

 

[Marin]

I hope the antivirals help, and I'm curious to hear how this goes. If I'm remembering correctly, antivirals have helped you with different ear issues in the past, correct?

When I first lost my hearing from noise trauma, I was only given steroids and I really wish that I had been given antivirals way back then.

I did have a doctor prescribe me a heavy dose in December (1,000 x 2 day) once I'd had severe hyperacusis for a couple of months and I'm sorry to say they didn't do anything after taking them for a week. The doctor thought that was enough time to have noticed a difference, so I stopped taking them. If you see some benefit, I might reconsider starting them up again for a longer period of time since they didn't seem to hurt. My pain is mostly in my ears, but I do have trigeminal pain and irritation, too.

 

[FGG]

I hope the antivirals help, and I'm curious to hear how this goes. If I'm remembering correctly, antivirals have helped you with different ear issues in the past, correct?

When I first lost my hearing from noise trauma, I was only given steroids and I really wish that I had been given antivirals way back then.

I did have a doctor prescribe me a heavy dose in December (1,000 x 2 day) once I'd had severe hyperacusis for a couple of months and I'm sorry to say they didn't do anything after taking them for a week. The doctor thought that was enough time to have noticed a difference, so I stopped taking them. If you see some benefit, I might reconsider starting them up again for a longer period of time since they didn't seem to hurt. My pain is mostly in my ears, but I do have trigeminal pain and irritation, too.

A week is absolutely not enough time imo. Or at least it wasn't for me. For my vertigo issues I was on 4x daily Acyclovir for 6-8 weeks before I noticed any difference but once I did, it fully resolved the issue for me. In fact, I had a full rotational vertigo attack 2 weeks into treatment and a minor attack a few weeks after that but I kept going.

I'm still on once a day maintenance even years later but just increased it to 4x daily to see if it has any effect on my neuralgia. I'm giving it the full 6-8 weeks to see.

 

[Marin]

A week is absolutely not enough time imo. Or at least it wasn't for me. For my vertigo issues I was on 4x daily Acyclovir for 6-8 weeks before I noticed any difference but once I did, it fully resolved the issue for me. In fact, I had a full rotational vertigo attack 2 weeks into treatment and a minor attack a few weeks after that but I kept going.

I'm still on once a day maintenance even years later but just increased it to 4x daily to see if it has any effect on my neuralgia. I'm giving it the full 6-8 weeks to see.

Huh, good to know! Thank you for the info.

Are you taking 500 mg 4 x a day?

 

[GBB]

Warning: long, speculative rabbit hole.

I came across this study last night and was intrigued (I'm going to tie this into noxacusis, stick with me):

Middle Ear Muscle Dysfunction as the Cause of Meniere's Disease

It suggests that hydrops is perhaps a consequence of middle ear dysfunction in Meniere's, and not the primary cause (akin to the amyloid/Alzheimer's theory) even though it is related to the symptomology.

And in fact, in the literature, some doctors are starting to successfully treat some Meniere's cases with middle ear tendonotomy surgery.

It further seems to fit since some people with Meniere's can go into remission by treating TMJ or neck instability, which are all linked to middle ear function.

Anyway, it got me thinking... people with Meniere's can also sometimes go into remission with anti-viral therapy alone (as in Dr. Gacek's work).

So how would viral causes be related to Meniere's if the middle ear were the culprit in at least some of that cases?

Through the Facial and Trigeminal nerves.

These nerves don't just receive sensory information, they control the normal function of the middle ear muscles.

I also considered that many people here report other systemic nerve issues while experiencing noxacusis: general nerve pain, interstitial cystitis (which can be viral), etc. and even stranger there are cases where things like acupuncture made it so much worse (which can cause local nerve irritation and increased viral shedding) and not just temporarily:

A Herpes Simplex Virus Infection Secondary to Acupuncture and Cupping

How would noise fit in? Overstimulation of the middle ear muscles and nerve irritation, which then leads to viral shedding.

Note: I am not making an over generalization that there is a viral component in all cases but it seems like it could be a co-factor in cases where there is a lot of pain spread over Facial and Trigeminal nerves especially.

And herpes viruses: (HSV-1, HSV-2, EBV, CMV Zoster etc.) reactivation are linked to stress as well which is often a co-factor.

Perhaps it's a self perpetuating cycle because the viruses thrive in oxidative stress but the middle ear responds to nerve irritation with oxidative stress. But it also points to a possible additional reason why something like Ebselen really may help some noxacusis cases (has anti viral properties as well).

This obviously would apply less to people without accompanying facial pain.

Thoughts?

I kind of just want to try Acyclovir - my symptom presentation has been so erratic and atypical, and was preceded by a bad head cold for a few weeks. I am mulling just asking my doctor. At first I had not just erratic tinnitus and hyperacusis, but also feelings of bands of tightness in my head and scalp, nausea, and other weird nerve-y feeling that I can't even describe, like the nerves in my head and ears were just being fucked with. The best way I can describe it is as if a dial up router were connecting and interfacing with my inner ears and face, and everything was just scrambled. My ENT basically settled on "something post-viral" as he didn't think my noise exposure could do this, but never recommended this drug, just a diuretic (Acetazolamide) to "try to clear things out" in the inner ear - I never understood precisely how this was meant to work.

Also one session of electro acupuncture sent me to a new astronomical level, as you said.

I'm not soliciting a medical opinion, but are there any pronounced risks to the drug, specific to our community?

 

[FGG]

Huh, good to know! Thank you for the info.

Are you taking 500 mg 4 x a day?

800 mg 4x a day, but I only have high titers for EBV and EBV needs that dose per my prescribing doctor. I'm negative for both of the supposedly easier to target Herpes Viruses (HSV-1 and 2).

 

[FGG]

I kind of just want to try Acyclovir - my symptom presentation has been so erratic and atypical, and was preceded by a bad head cold for a few weeks. I am mulling just asking my doctor. At first I had not just erratic tinnitus and hyperacusis, but also feelings of bands of tightness in my head and scalp, nausea, and other weird nerve-y feeling that I can't even describe, like the nerves in my head and ears were just being fucked with. The best way I can describe it is as if a dial up router were connecting and interfacing with my inner ears and face, and everything was just scrambled. My ENT basically settled on "something post-viral" as he didn't think my noise exposure could do this, but never recommended this drug, just a diuretic (Acetazolamide) to "try to clear things out" in the inner ear - I never understood precisely how this was meant to work.

Also one session of electro acupuncture sent me to a new astronomical level, as you said.

I'm not soliciting a medical opinion, but are there any pronounced risks to the drug, specific to our community?

Not that I aware of but that doesn't mean there aren't any, of course.

I can only speak to my own experience and the only side effect my doctor took the time to warn me about was kidney stones.

Because of that, I attempt to almost always take it with a full glass of water.

I tried Valaciclovir first, though, and it gave me a pounding hypertension type feeling in my head and an actual panic attack for some bizarre reason but Acyclovir I tolerate with zero issues, even long term (did high dose for a year and been on low dose for a year after).

I got viral titers first and I would recommend that. The dosage is different for different viruses.

 

[Matchbox]

I kind of just want to try Acyclovir - my symptom presentation has been so erratic and atypical, and was preceded by a bad head cold for a few weeks. I am mulling just asking my doctor. At first I had not just erratic tinnitus and hyperacusis, but also feelings of bands of tightness in my head and scalp, nausea, and other weird nerve-y feeling that I can't even describe, like the nerves in my head and ears were just being fucked with. The best way I can describe it is as if a dial up router were connecting and interfacing with my inner ears and face, and everything was just scrambled. My ENT basically settled on "something post-viral" as he didn't think my noise exposure could do this, but never recommended this drug, just a diuretic (Acetazolamide) to "try to clear things out" in the inner ear - I never understood precisely how this was meant to work.

Also one session of electro acupuncture sent me to a new astronomical level, as you said.

I'm not soliciting a medical opinion, but are there any pronounced risks to the drug, specific to our community?

High doses of Lysine is always a safe bet if it happens to be herpes, especially if you get ulcers at all in your throat.

Been trying it, can't say I've noticed a lot.

 

[Lukee]

Has anyone tried Monolaurin? It's commonly used in helping CFS and viral illnesses. I would imagine that it could work synergistically with other antivirals and it's natural in origin and has a strong safety profile.

@FGG, your post has me thinking some of my symptoms might have to do with some form of EBV reactivation. I got my tinnitus and subsequent ear fullness, pressure, pain, etc from Wim Hof breathing exercises. I guess during the exercises the body goes through pretty intense stress. I was already considering (before I started WHM) that I had some form of EBV reactivation because I was lethargic and my blood work showed active and latent infection (they don't show titers here). The onset of the ear symptoms was almost a week after I noticed the tinnitus.

Do you think it's possible that it's viral related or does it seem like a common issue when acquiring tinnitus? I really feel like I have a middle ear issue, possible otitis media, that only came on after the tinnitus, but my ENT said everything looks normal and no ETD.

 

[Aaron91]

Warning: long, speculative rabbit hole.

I came across this study last night and was intrigued (I'm going to tie this into noxacusis, stick with me):

Middle Ear Muscle Dysfunction as the Cause of Meniere's Disease

It suggests that hydrops is perhaps a consequence of middle ear dysfunction in Meniere's, and not the primary cause (akin to the amyloid/Alzheimer's theory) even though it is related to the symptomology.

And in fact, in the literature, some doctors are starting to successfully treat some Meniere's cases with middle ear tendonotomy surgery.

It further seems to fit since some people with Meniere's can go into remission by treating TMJ or neck instability, which are all linked to middle ear function.

Anyway, it got me thinking... people with Meniere's can also sometimes go into remission with anti-viral therapy alone (as in Dr. Gacek's work).

So how would viral causes be related to Meniere's if the middle ear were the culprit in at least some of that cases?

Through the Facial and Trigeminal nerves.

These nerves don't just receive sensory information, they control the normal function of the middle ear muscles.

I also considered that many people here report other systemic nerve issues while experiencing noxacusis: general nerve pain, interstitial cystitis (which can be viral), etc. and even stranger there are cases where things like acupuncture made it so much worse (which can cause local nerve irritation and increased viral shedding) and not just temporarily:

A Herpes Simplex Virus Infection Secondary to Acupuncture and Cupping

How would noise fit in? Overstimulation of the middle ear muscles and nerve irritation, which then leads to viral shedding.

Note: I am not making an over generalization that there is a viral component in all cases but it seems like it could be a co-factor in cases where there is a lot of pain spread over Facial and Trigeminal nerves especially.

And herpes viruses: (HSV-1, HSV-2, EBV, CMV Zoster etc.) reactivation are linked to stress as well which is often a co-factor.

Perhaps it's a self perpetuating cycle because the viruses thrive in oxidative stress but the middle ear responds to nerve irritation with oxidative stress. But it also points to a possible additional reason why something like Ebselen really may help some noxacusis cases (has anti viral properties as well).

This obviously would apply less to people without accompanying facial pain.

Thoughts?

My reading on viruses is minimal and I don't have any kind of diagnosed viral history, but after reading this, assuming your theory is true, I think it's entirely possible I may have been carrying something unaware that was dormant that later became activated - I too have all the trigeminal neuralgia symptoms. What's really interesting to me is that you mention these viruses can be re-activated through stress. As I think you know already, my noxacusis developed during a very stressful time of my life after my dad died. The actual trigger was a loud motorbike, but looking back on that event, I've been exposed to far louder noises previously (jet engines) without issue, so why did that event trigger it?

As always with any of these theories, I always ask how we can reconcile this with current knowledge of hyperacusis and other anecdotal cases. For those who recover from noxacusis naturally over time, could this be explained by the virus going into some kind of remission, and can viral remission happen naturally? As we know, hyperacusis can take 1-2 years to improve in those who do recover, so I'm wondering how we can reconcile this. As I say, my knowledge/understanding of viruses is limited, but hopefully I can help by prodding a few questions. One of the weird things about my own condition is that on a daily or weekly basis one ear will always be worse than the other and it seems to flip without warning. I'm wondering whether a viral component could explain my own case?

@FGG, your post has me thinking some of my symptoms might have to do with some form of EBV reactivation. I got my tinnitus and subsequent ear fullness, pressure, pain, etc from Wim Hof breathing exercises. I guess during the exercises the body goes through pretty intense stress. I was already considering (before I started WHM) that I had some form of EBV reactivation because I was lethargic and my blood work showed active and latent infection (they don't show titers here). The onset of the ear symptoms was almost a week after I noticed the tinnitus.

This floored me. Funnily enough, I did a WHM breathing session about an hour before my triggering event (I had been looking for stress coping mechanisms during lockdown) and had been doing them for two months leading up to the event. I'm now wondering whether that was the absolute worst thing I could do.

As far as taking anti-virals are concerned, I know @Jrblovsky has taken them in the past but I don't think he had any success, although he may have only had tinnitus and not hyperacusis. Assuming your theory is correct, do you think an anti-viral would help with the trigeminal neuralgia only or could it help the general ear pain as well? Or does this depend on what hyperacusis model you subscribe to - type II afferent sensitisation vs irritated trigeminal nerve/middle ear muscles?

I'm seriously going to consider trying an anti-viral after reading this but will do some further reading first and may also see how you get on. I'm generously nervous about popping pills but it's got to the point where I'll try anything for some relief.

 

[FGG]

High doses of Lysine is always a safe bet if it happens to be herpes, especially if you get ulcers at all in your throat.

Been trying it, can't say I've noticed a lot.

Hypothetically, you could also have EBV (no ulcers) and Lysine seems much less effective for that.

I would definitely recommend people get full viral titers as a baseline if they wanted to try this.

 

[FGG]

Has anyone tried Monolaurin? It's commonly used in helping CFS and viral illnesses. I would imagine that it could work synergistically with other antivirals and it's natural in origin and has a strong safety profile.

@FGG, your post has me thinking some of my symptoms might have to do with some form of EBV reactivation. I got my tinnitus and subsequent ear fullness, pressure, pain, etc from Wim Hof breathing exercises. I guess during the exercises the body goes through pretty intense stress. I was already considering (before I started WHM) that I had some form of EBV reactivation because I was lethargic and my blood work showed active and latent infection (they don't show titers here). The onset of the ear symptoms was almost a week after I noticed the tinnitus.

Do you think it's possible that it's viral related or does it seem like a common issue when acquiring tinnitus? I really feel like I have a middle ear issue, possible otitis media, that only came on after the tinnitus, but my ENT said everything looks normal and no ETD.

I don't think herpes viral activation is a common cause of tinnitus alone without obvious hearing loss but it seems to happen occasionally.

My theory is it's probably more relevant (usually) with middle ear and/or face pain symptoms.

It's definitely possible, though. Anti-virals were the only thing that helped my vestibular symptoms and I went to probably 8 different doctors before anyone even thought to look for ongoing infectious etiologies.

I will update on my ear and face pain symptoms here in a month or so (unless something changes sooner).

 

[annV]

Acyclovir is safe right? Not otototoxic in any form or manner? If so, wouldn't this be worth a try for a lot of people?

 

[FGG]

My reading on viruses is minimal and I don't have any kind of diagnosed viral history, but after reading this, assuming your theory is true, I think it's entirely possible I may have been carrying something unaware that was dormant that later became activated - I too have all the trigeminal neuralgia symptoms. What's really interesting to me is that you mention these viruses can be re-activated through stress. As I think you know already, my noxacusis developed during a very stressful time of my life after my dad died. The actual trigger was a loud motorbike, but looking back on that event, I've been exposed to far louder noises previously (jet engines) without issue, so why did that event trigger it?

As always with any of these theories, I always ask how we can reconcile this with current knowledge of hyperacusis and other anecdotal cases. For those who recover from noxacusis naturally over time, could this be explained by the virus going into some kind of remission, and can viral remission happen naturally? As we know, hyperacusis can take 1-2 years to improve in those who do recover, so I'm wondering how we can reconcile this. As I say, my knowledge/understanding of viruses is limited, but hopefully I can help by prodding a few questions. One of the weird things about my own condition is that on a daily or weekly basis one ear will always be worse than the other and it seems to flip without warning. I'm wondering whether a viral component could explain my own case?

This floored me. Funnily enough, I did a WHM breathing session about an hour before my triggering event (I had been looking for stress coping mechanisms during lockdown) and had been doing them for two months leading up to the event. I'm now wondering whether that was the absolute worst thing I could do.

As far as taking anti-virals are concerned, I know @Jrblovsky has taken them in the past but I don't think he had any success, although he may have only had tinnitus and not hyperacusis. Assuming your theory is correct, do you think an anti-viral would help with the trigeminal neuralgia only or could it help the general ear pain as well? Or does this depend on what hyperacusis model you subscribe to - type II afferent sensitisation vs irritated trigeminal nerve/middle ear muscles?

I'm seriously going to consider trying an anti-viral after reading this but will do some further reading first and may also see how you get on. I'm generously nervous about popping pills but it's got to the point where I'll try anything for some relief.

Just to be clear, I am not suggesting that everyone with noxacusis has a viral cofactor. Just like not everyone with Meniere's responds to anti-virals (but some do dramatically, as in the Dr. Gacek's studies and in my case it caused a full remission of vertigo symptoms).

As far as latent viral activation, my vertigo started during pregnancy (which led to miscarriage), I never had a known viral issue before. But what's interesting is my mother had Bell's Palsy her entire pregnancy with me and it resolved a few weeks after I was born.

But viral shedding is highly variable which is why some people with genital herpes need to go on anti-virals chronically and some don't.

But, apart from that, a virus is clearly not the whole picture even when it's a co-factor. You still have middle ear inflammation that, when bad enough, has its own cycle of perpetuation (muscle anaerobic states, histamine release and subsequent swelling, which causes more inflammation, etc). And of course, inner ear involvement leading to a feedback loop with middle ear reflexes as well as direct inner ear inflammation itself.

However, I believe further viral sensitization of the trigeminal and facial nerves could impact severity. Especially in cases where the facial pain is the more severe pain. But hypothetically, other cofactors like underlying TMJ could contribute too.

My overall point would be this: if there are cofactors, it's an advantage in reducing severity to identify them and treat them.

 

[Zugzug]

I find the viral reactivation theories a lot more plausible in the unilateral cases (and of course, like you say if titers are measured to be high). The reason why people get tinnitus during stress is probably usually caused by the ideas shared in the paper you posted about dynorphin-mediated glutamate excitotoxicity of Type I nerves. Stress also increases the likelihood of an injurious noise causing Type II afferent sensitization as well as trigeminal and facial nerve injuries.

It's probably super multi-factorial. I don't think stress usually causes hearing conditions -- it's just a primer for actual hearing damage.

Bilateral, and particularly progressive and unexplained causes, are probably usually autoimmune. This is also true for bilateral Meniere's. It's probably caused by fucked genetics combined with environmental triggers (like stress). I'm not convinced of the hidden virus theories.

 

[FGG]

I find the viral reactivation theories a lot more plausible in the unilateral cases (and of course, like you say if titers are measured to be high). The reason why people get tinnitus during stress is probably usually caused by the ideas shared in the paper you posted about dynorphin-mediated glutamate excitotoxicity of Type I nerves. Stress also increases the likelihood of an injurious noise causing Type II afferent sensitization as well as trigeminal and facial nerve injuries.

It's probably super multi-factorial. I don't think stress usually causes hearing conditions -- it's just a primer for actual hearing damage.

Bilateral, and particularly progressive and unexplained causes, are probably usually autoimmune. This is also true for bilateral Meniere's. It's probably caused by fucked genetics combined with environmental triggers (like stress). I'm not convinced of the hidden virus theories.

I agree it's multi-factorial. The dynorpin glutamate connection is one that is increasingly being validated.

If there is a viral component to severity, though, it should be addressed.

Likewise, TMJ doesn't seem to usually be an inciting cause for tinnitus (unless the TMJ is severe) but it is highly linked to tinnitus severity.

In general, people should address any and all possible co-factors that influence severity (even if they much less commonly may be an inciting cause).

By the way, at least one herpes virus (CMV) is linked to bilateral hearing disorders but it's definitely less common. Neurotrophic viruses don't always sit in one place and can be widely disseminated. You can have full body shingles, for instance.

A lot of us certainly don't have common disease presentation and viral titers are not usually that expensive. I think it's worth ruling in/out.

 

[Aaron91]

Just to be clear, I am not suggesting that everyone with noxacusis has a viral cofactor. Just like not everyone with Meniere's responds to anti-virals (but some do dramatically, as in the Dr. Gacek's studies and in my case it caused a full remission of vertigo symptoms).

As far as latent viral activation, my vertigo started during pregnancy (which led to miscarriage), I never had a known viral issue before. But what's interesting is my mother had Bell's Palsy her entire pregnancy with me and it resolved a few weeks after I was born.

But viral shedding is highly variable which is why some people with genital herpes need to go on anti-virals chronically and some don't.

But, apart from that, a virus is clearly not the whole picture even when it's a co-factor. You still have middle ear inflammation that, when bad enough, has its own cycle of perpetuation (muscle anaerobic states, histamine release and subsequent swelling, which causes more inflammation, etc). And of course, inner ear involvement leading to a feedback loop with middle ear reflexes as well as direct inner ear inflammation itself.

However, I believe further viral sensitization of the trigeminal and facial nerves could impact severity. Especially in cases where the facial pain is the more severe pain. But hypothetically, other cofactors like underlying TMJ could contribute too.

My overall point would be this: if there are cofactors, it's an advantage in reducing severity to identify them and treat them.

I understand, I was just saying that perhaps in my case a virus could be a co-factor (assuming your theory holds) because my hyperacusis happened during a time of elevated and chronic stress.

Something I didn't mention was that I syringed my right ear a few days before I developed hyperacusis as I had an ear wax issue. This wasn't something I'd usually do but given I couldn't see an ENT due to lockdown, I got desperate. I've since wondered whether that could have also been a co-factor, but given my hyperacusis is bilateral and I only syringed one ear it didn't make much sense. I'm now wondering whether that could have served as an entry point for a virus?

Additionally, what do you think of the Wim Hof Method that both me and @Lukee practised before we got hyperacusis? Having done some basic reading around it, I'm wondering whether the oxygen deprivation and vasoconstriction caused by holding one's breath for an excessive period of time could also cause some kind of middle/inner ear damage.

Also worth noting I have TMJ, but I've had that for over 10 years so not sure what may have changed now, nor am I sure what to do about it. My max fax surgeon wanted me to go for an MRI to confirm diagnosis after I got hyperacusis, which I obviously rejected, so don't know where I stand there.

Edit: In any case, I'm going to go get tested for EBV and a range of other viruses this week.

 

[Prongs13]

I have read this post quite a few times this week.

I strongly suspect viral issues are at the root of my ear problems, and think you may be onto something with your hypothesis. I also experience on and off facial nerve tingling and interstitial cystitis symptoms.

2 weeks after my tinnitus onset in November 2020, I tested positive for an active EBV infection (almost certainly a reactivation). I suspect I had initially contracted it in mid 2019 where I started to feel tingling in my facial nerves on my left side. When I eventually developed tinnitus and hyperacusis, the tinnitus and especially the hyperacusis was much worse on the left side.

My hyperacusis is extremely variable, even within a single day. And is something that is absolutely connected to my middle ear muscles and facial/trigeminal nerves, although its hard for me to understand the causality clearly.

When my hyperacusis was bad, it always came with pain in my trigeminal nerve and around the TMJ. I could frequently reduce my hyperacusis and TTTS like symptoms by simply chewing gum (indicating that there was a strong correlation with muscles).

I am about 5 months past my onset and doing much better, and have been taking a lot of anti-virals as part of my regimen. My feeling is although anti-viral therapy is critical in terms of removing the root cause and preventing deterioration, I am not sure if that by it self can reverse the damage that was done.

My current working theory is that to 'fix' the situation I need to-

1. Ensure that I dont have anymore major viral activations.
2. Somehow train my body to let go of muscle tension around my face, head and neck.
3. Create an environment where the nerve damage can at least partially heal.

The above 3 things are also ranked in terms of their level of difficulty and uncertainty. I am fairly confident of being able to control the viral load but healing nerve damage is the million dollar problem.

 

[FGG]

I have read this post quite a few times this week.

I strongly suspect viral issues are at the root of my ear problems, and think you may be onto something with your hypothesis. I also experience on and off facial nerve tingling and interstitial cystitis symptoms.

2 weeks after my tinnitus onset in November 2020, I tested positive for an active EBV infection (almost certainly a reactivation). I suspect I had initially contracted it in mid 2019 where I started to feel tingling in my facial nerves on my left side. When I eventually developed tinnitus and hyperacusis, the tinnitus and especially the hyperacusis was much worse on the left side.

My hyperacusis is extremely variable, even within a single day. And is something that is absolutely connected to my middle ear muscles and facial/trigeminal nerves, although its hard for me to understand the causality clearly.

When my hyperacusis was bad, it always came with pain in my trigeminal nerve and around the TMJ. I could frequently reduce my hyperacusis and TTTS like symptoms by simply chewing gum (indicating that there was a strong correlation with muscles).

I am about 5 months past my onset and doing much better, and have been taking a lot of anti-virals as part of my regimen. My feeling is although anti-viral therapy is critical in terms of removing the root cause and preventing deterioration, I am not sure if that by it self can reverse the damage that was done.

My current working theory is that to 'fix' the situation I need to-

1. Ensure that I dont have anymore major viral activations.
2. Somehow train my body to let go of muscle tension around my face, head and neck.
3. Create an environment where the nerve damage can at least partially heal.

The above 3 things are also ranked in terms of their level of difficulty and uncertainty. I am fairly confident of being able to control the viral load but healing nerve damage is the million dollar problem.

5 months is pretty quick to already be seeing a lot of progress so you are clearly doing something right.

And I agree that treating a virus co-factor in and of itself is not going to cure anyone but anything that could add to severity (e.g.. allergy/immune, viral, TMJ) should be addressed.

EBV is particularly nasty and immune dysregulating and has been strongly linked to everything from MS to Lymphoma.

 

[Prongs13]

I found this article on a substance I have been experimenting with. Been researching agents that can help improve nerve health:

Rapamycin ameliorates neuropathic pain by activating autophagy and inhibiting interleukin-1β in the rat spinal cord

 

[FGG]

I found this article on a substance I have been experimenting with. Been researching agents that can help improve nerve health:

Rapamycin ameliorates neuropathic pain by activating autophagy and inhibiting interleukin-1β in the rat spinal cord

A macrolide drug is what destroyed my hearing in the first place. I would never take this drug personally.

 

[Prongs13]

Deeply sorry to hear about that. I think reckless prescribing of antibiotics is far too common and borderline criminal.

I was given Cipro for a minor UTI in 2019 and I strongly suspect that the Cipro toxicity kicked off my subsequent health issues. Prior to Cipro, I'd never had any real health issues my entire life.

Regarding the Rapamycin macrolide warning, point taken. Will research and think over whether to continue to experiment.

 

[Marin]

Welp, looks like I just tested positive for EBV. Grrrrrrrrrreat, sigh.

I assume I'll be hearing from my doctor within a couple of days to discuss. I sure wish my incompetent doctors had thought to test me for this or at least given me antivirals when I first lost my hearing. Who knows how much of this factors into the severity of my symptoms if any.

@FGG, thank you for making this post. I wouldn't have thought to ask for this test if you hadn't brought it up.

 

[Maria Francesca]

Create an environment where the nerve damage can at least partially heal.

What happened to you and your symptoms are really similar to my case.

I was also doing better on antivirals. Then I stopped Turmeric as I thought I had been too many months on it, changed brand of Boswellia and added Andrographis and I worsened. So I am going to resume my previous regime.

I do not think nerves are long term damaged, but they are constantly under inflammation.

When I wake up in the middle of the night, 3-4 am, I usually hear silence. Then the hissing gradually builds up. But if I eat heavy the night before, this does not happen.
My crazy hypothesis now: as liver is especially active from 1 to 3 am in removing toxins, it is capable to remove virus (or bacteria?) induced toxins and nerve is no more inflamed, so no more hissing. But if liver has too much workload, it cannot clean it all and hissing persists.

So to me the key point would be to remove virus/bacteria and clean toxins which induce inflammation.

On which antivirals are you?