Hyperacusis/Noxacusis: Various Types of Pain and Their Associations

[SmallRonnie]

I got an episode of worse pain in my ear yesterday and I don't know why. Previously I had a dull pain that was getting better over time.

Yesterday I was getting very sharp pain in my ear that would last a couple of seconds, then go away. Repeated maybe once every 30 minutes all day. Today I have a more dull pain, maybe 5/10 compared to 11/10 yesterday.

Kind of odd really. Not sure what caused it. Maybe I was listening to music a little louder than usually but not sure.

Glad it's better again today but again always worried these setbacks will become more frequent or cause worse long lasting damage.

 

[Jerad]

I'd be interested in reading some of y'alls opinions about the varying types of hyperacusis/noxacusis.

I get immediate, ear-stabbing pain from many sounds, but the pain goes away as soon as the sound itself is done. If it's a sound that's not quite as sensitive to me, I'll just feel some mild irritation or discomfort rather than the stabbing while, again, the sound itself is happening. The pain goes away once the sound is finished in all of these cases. Sometimes, I'll feel some ear fullness or stuffiness as the day goes on, as if my ears are fatigued and need a break. I don't get the facial pain or burning.

So my questions are, does instant, stabbing pain that happens while the actual sound occurs a sign of a specific malfunction within a part of the ear? Like, in contrast, if someone feels burning, aching, or facial pain that is delayed, does that mean the symptoms are coming from a different part of the ear than the instant pain, like a different pathology or something? Why do some of us feel instant pain and others get delayed? Maybe one a middle ear problem and the other the cochlea? Which is harder to treat or more severe?

The differences between loudness hyperacusis and noxacusis have confused me. For the longest time, I thought I just had loudness hyperacusis because I wasn't experiencing delayed pain or facial pain. But I have recently learned that my symptoms are still indicative of noxacusis. I thought all types of hyperacusis caused forms of physical pain, and that noxacusis was when it crosses over into delayed pain in the ears or face.

 

[UKBloke]

I thought all types of hyperacusis caused forms of physical pain

In the UK, NHS defines hyperacusis as follows (no mention of physical pain at all so these umbrella labels can be highly confusing):

 

[SmallRonnie]

I'd be interested in reading some of y'alls opinions about the varying types of hyperacusis/noxacusis.

I get immediate, ear-stabbing pain from many sounds, but the pain goes away as soon as the sound itself is done. If it's a sound that's not quite as sensitive to me, I'll just feel some mild irritation or discomfort rather than the stabbing while, again, the sound itself is happening. The pain goes away once the sound is finished in all of these cases. Sometimes, I'll feel some ear fullness or stuffiness as the day goes on, as if my ears are fatigued and need a break. I don't get the facial pain or burning.

So my questions are, does instant, stabbing pain that happens while the actual sound occurs a sign of a specific malfunction within a part of the ear? Like, in contrast, if someone feels burning, aching, or facial pain that is delayed, does that mean the symptoms are coming from a different part of the ear than the instant pain, like a different pathology or something? Why do some of us feel instant pain and others get delayed? Maybe one a middle ear problem and the other the cochlea? Which is harder to treat or more severe?

The differences between loudness hyperacusis and noxacusis have confused me. For the longest time, I thought I just had loudness hyperacusis because I wasn't experiencing delayed pain or facial pain. But I have recently learned that my symptoms are still indicative of noxacusis. I thought all types of hyperacusis caused forms of physical pain, and that noxacusis was when it crosses over into delayed pain in the ears or face.

I don't know what the differences between immediate and delayed pain are and I don't think anyone does really. If you search noxacusis on Google Scholar, you get zero results. There could be different reasons. I would guess they are both nerve damage issues while some people could be experiencing pain from issues with the Tensor tympani muscle/eardrum and Eustachian tube.

I am pretty confident that the burning pain is nerve damage since that is a common description of all types of nerve damage. I would say this is applicable for both immediate and delayed pain but I am no doctor. You would need to speak to a neurosurgeon really for the best answer. Thinking about it now, all noxacusis sufferers should probably be speaking with neurosurgeons as opposed to ENTs. Maybe a neurologist would suffice.

I never get immediate pain from noise. It always takes at least 2 or 3 minutes (sometimes delayed by hours) and then I will start to feel slight aches/burning. Then I can have burning pain and aches that last hours, days or months. I've had burning pain in my ear at varying levels almost every day for the past 10 months. I have had some days where it's been very very low though and a few days without any pain too. My eardrum also spasms sometimes. I get ear fullness for a few days/weeks after a setback. I don't think I get any facial pain, maybe a small bit. I also have a pain in my neck from stress a lot of the time so trying to work on that now since neck pain often makes these things worse. If I tilt my head over to my left a lot, then the tinnitus in my left ear goes to a way higher pitch.

Since my pain is almost always delayed, it makes it really hard for me to know what is actually causing it. I don't have loudness hyperacusis either. I do have tinnitus that varies massively. Usually a high pitch single tone with some other tones thrown in. That's all my bad ear. My good ear has been getting fleeting noxacusis, tinnitus and reactive tinnitus. I was thinking the pain in my good ear might be purely psychological since it only got bad once my bad ear was in a big setback.

So, since I am confident most of my pain is from nerve damage, I am now starting a course of supplements that increase the levels of BDNF and NGF and others that increase blood flow so they might get to the ear more easily. Things like Lion's Mane, Noopept, Semax, p21 (Cerebrolysin). Going to take a lot of trial and error. I believe my positive mindset in thinking some of this might work is making me cope a lot better and either making my noxacusis better or just letting me ignore it more easily.

I think it is key to know what is causing your pain so that you can treat it appropriately since there can be so many causes.

 

[grate_biff]

Maybe one a middle ear problem and the other the cochlea?

You answered your own question. I'm in your category.

Instant pain, no burning or facial pain = sensitized type II afferent nerve fibers in cochlea.

Delayed, burning an facial pain = MEM problem, probably trigeminal nerve involvement.

I guess one could have both. Ouch!!!

Fuck the medical world for not coming up with something!

For me, Gabapentin helps a little, but scared for it to become habit forming. Benzos also help, until they make it worse. Fuck benzos.

For us, XEN1101 is probably our best bet. The wait continues...

 

[Jerad]

Instant pain, no burning or facial pain = sensitized type II afferent nerve fibers in cochlea.

So do these type II nerve fibers calm down for some, to the point where they have significantly recovered? They must because I've significantly recovered from moderate/somewhat severe noxacusis before. But now, I'm the most severe I've ever been because of a series of unfortunate events that led to a bad relapse.

Thanks for the responses @SmallRonnie, @UKBloke, and @grate_biff. I would like to hear your opinions on the above question.

 

[SmallRonnie]

But now, I'm the most severe I've ever been because of a series of unfortunate events that led to a bad relapse.

I'm currently the same. I was improving from noxacusis, then had a setback to being worse than ever but slowly improving now about a month later.

I have heard a lot of stories of people recovering from severe noxacusis after a year or two. They are probably still susceptible to setbacks though I would imagine.

The way it improves slowly, seems like there is inflammation which takes a while to calm down. Some people have seen improvement from anti-inflammatory supplements such as NAC and Curcumin.

I'm going to try out a bunch of supplements now but it will be hard to know if they are actually working since my noxacusis is very slowly getting better anyway.

I think a boost of BDNF could help the nerve issues. So things like Lion's Mane and many others. I'm just ordering a huge list of supplements which boost BDNF and increase blood flow. Some people have had success with supplements that increase blood flow.

BDNF is what OTO-413 is using but that's an intratympanic injection. Maybe increasing it in the brain, then also increasing blood flow to the ear could help a little.

 

[SmallRonnie]

Look at this paper that was released just last year.

Moreover, the different features of tinnitus with and without hyperacusis identified here, may have contributed to currently ongoing controversial views on the neural basis of tinnitus that exist since decades. On the basis of this finding, we urgently recommend changing medical practice toward a sub-classification of tinnitus with and without hyperacusis with a specific emphasis on tinnitus duration. With the objective tools presented here, mutual efforts and harmonized methods may progress to find urgently needed, personalized therapies for tinnitus in ENT clinics.

This is exactly why all of the moderate+ noxacusis cases have always been so frustrated with ENTs and the like. Being grouped into the same category as tinnitus and mild hyperacusis, while it's completely different.

 

[LloydB]

This is an interesting thread and I want to add my comments as something bizarre has happened in the last 7 days.

I was diagnosed with mild tinnitus and pain hyperacusis almost a year ago, it largely went away but came back in April and I made it significantly worse over the next 2 months because of social events and audio devices.

In early June I was a complete mess, I could not stand any audio devices and I had every TTTS symptom under the sun – burning, fullness, neck pain, jaw pain, jaw clicking, jaw tension, tension headaches, facial tingling, crawling on my head, eye fluttering and all sorts of whooshing noises. Leaving the house meant using triple protection. My pain is the same as SmallRonnie – the delayed burning type and the longer the delay the worse the flare up will be. Where my LDLs crashed earlier in the spring, it would normally take 24-48 hours after the event for the setback to kick in.

Over the last 3 months, I have done a good job living the quiet life, but I struggled to get out of 24/7 earplugs due to horrendous burning. Early on I had lots of acupuncture and I'm currently on 25 mg of Nortiptyline which is due to go higher next week. Even though my overall tolerance was improving I could not understand why my ears burned in a 30 dB room.

Last Wednesday I had an appointment at a private London hospital with a Neurotologist and Audiological Scientist. The plan was to do a whole bunch of tests which involved blasts of sounds in my ears – standard hearing, LDL, tympanometry, pure tone audiometry, otoacustic emissions, stapedial reflexes/decay and medial olivo-cochlear suppression. I was scared out of mind because I was told some of them needed 80 dB low frequency sounds for 1-2 minute in each ear. I did the LDL test first and I was fine with 80/90 dB sounds, no immediate pain. Then I did all others apart from one which was a 90 dB 1 minute in each ear, I refused to do that.

After a few hours my ears started to burn and I had the standard fullness and whooshing noises, I was thinking the following day was going to be worse. However, when I woke up the next morning the whooshing had gone, and I felt better than the day before. Since then, I got better each day and now 7 days later I am finally out of earplugs sat in my living room which is around 40 dB with pink noise in the background. Obviously, I'm very happy, but this doesn't make much sense, so I have emailed the Neurotologist to see what she thinks has happened. Perhaps I was living too quiet a life and the loud sounds reactivated something in my brain. I probably should have introduced pink noise earlier a few months ago rather being sat in silence.

I certainly don't recommend anyone tries the above but this but it's an interesting story which I wanted to share. I did read somewhere on this forum about somebody with severe pain hyperacusis went to hospital and after getting hit with everyday sounds, his hyperacusis symptoms improved so I'm not the only one this has happened to.

This is the summary of the tests:

The auditory tests indicated left-sided high-frequency (4 kHz) hearing loss; this audiometric pattern is highly suggestive of noise-induced hearing loss. The otoacoustic emission test revealed the high-frequency cochlear cell damage on both sides, more pronounced on the left. The olivo-cochlear suppression test and Stapedial reflexes were normal, which suggest normal physiological mechanisms which are responsible for perception of loudness, up to the brain stem level. His hyperacusis and tinnitus are most likely due to dysfunction in central adaptive mechanisms at the higher level of the central auditory system (probably at the cortical level). His other sensory functions were also affected, as judged by additional symptoms (pressure headaches, occipital pain, tension in the jaw and temporo-mandibular joint, 'tingling' of the face and scalp pain), which have largely subsided.

 

[Forever hopeful]

I think this is not accurate. Or needs to be explained better. People do not "heal" from pain hyperacusis, meaning getting back to normal, this is, recovering crystal clear hearing again while being able to tolerate loud noise.

On the contrary, what happens is that "ears change" and may develop other hearing conditions as a trade off for less extreme or less severe hyperacusis.

These other hearing conditions range from hearing loss to tinnitus, distortion, etc or a combination of those.

I have read many, many posts on this forum by posters for whom hyperacusis had improved/resolved on its own.

 

[SmallRonnie]

I have read many, many posts on this forum by posters for whom hyperacusis had improved/resolved on its own.

My pain hyperacusis recovers massively when I rest my ears after setbacks. Still have a low tolerance to noise but I do see huge improvements always.

 

[Juan]

I have read many, many posts on this forum by posters for whom hyperacusis had improved/resolved on its own.

I do not know anyone with true pain hyperacusis that has recovered. For instance there was that guy that posted his NYC trip on YouTube saying "he got hyperacusis there and afterwards miraculously recovered"... I think that guy never had hyperacusis at all, and was not exposed to sound levels that can produce lasting damage either.

There have been people who had stress and minor noise exposure and did recover, but the ones who had real damage did not recover.

And sometimes there is also a fake perception of recovery, in the sense that people start having hearing issues, hyperacusis etc and somehow try to carry on with their lives, only to find they were just one setback away from permanent damage, and getting stuck with hyperacusis...

 

[Forever hopeful]

I do not know anyone with true pain hyperacusis that has recovered. For instance there was that guy that posted his NYC trip on YouTube saying "he got hyperacusis there and afterwards miraculously recovered"... I think that guy never had hyperacusis at all, and was not exposed to sound levels that can produce lasting damage either.

There have been people who had stress and minor noise exposure and did recover, but the ones who had real damage did not recover.

And sometimes there is also a fake perception of recovery, in the sense that people start having hearing issues, hyperacusis etc and somehow try to carry on with their lives, only to find they were just one setback away from permanent damage, and getting stuck with hyperacusis...

Perhaps there's a distinction between subsets of hyperacusis. Maybe people who are irritated by sounds but are not experiencing true pain do experience recovery.

 

[Michael Leigh]

I do not know anyone with true pain hyperacusis that has recovered

I once had very severe pain hyperacusis that was completely cured in 2 years, wearing white noise generators and having regular counselling as part of TRT. This may not apply to everyone because we are all different.

The hyperacusis has not returned in 24 years even though I suffered a second noise trauma in 2008.

Michael

 

[SmallRonnie]

Perhaps there's a distinction between subsets of hyperacusis. Maybe people who are irritated by sounds but are not experiencing true pain do experience recovery.

I read a research paper from 2020 that stated the current medical knowledge of hyperacusis was terribly inaccurate and that there are indeed many different subsets of hyperacusis.

For instance, it is common that people say you can recover from hyperacusis by using noise generators, like Michael Leigh has and many others. My hyperacusis is the exact opposite where I just get worse following that treatment. This is what the research says too.

People do have good intentions when they try to give advice about hyperacusis by basing the advice off their own experiences but in some cases, that advice can do more harm than good.

My hyperacusis has been getting progressively worse over a course of 5 years. There are periods where I'm recovering but in general it's worsening. Sound therapy 100% did not and will never work for me.

 

[Forever hopeful]

I read a research paper from 2020 that stated the current medical knowledge of hyperacusis was terribly inaccurate and that there are indeed many different subsets of hyperacusis.

For instance, it is common that people say you can recover from hyperacusis by using noise generators, like Michael Leigh has and many others. My hyperacusis is the exact opposite where I just get worse following that treatment. This is what the research says too.

People do have good intentions when they try to give advice about hyperacusis by basing the advice off their own experiences but in some cases, that advice can do more harm than good.

My hyperacusis has been getting progressively worse over a course of 5 years. There are periods where I'm recovering but in general it's worsening. Sound therapy 100% did not and will never work for me.

I am so sorry to hear that. I know I'm dealing with tinnitus that is reactive to sounds. Particularly any effort I try to make to mask it.

I understand from others on the site that it may be a form of hyperacusis even though I don't have any of the other symptoms. I guess I'm not really sure how I would treat that. Particularly since sound therapy seems to be what is prescribed for hyperacusis.

 

[grate_biff]

I wish to never hear about TRT ever again.

It's the longest lived scam for us poor souls, yet so many so called experts have bought in to it. Must be because it's a cash-cow.

I hate it and the man who invented it. What an arrogant man. In his eyes, I'm a "flag waver", seeking attention for my troubles, since TRT did nothing.

He was right about one thing though; benzos are poison for hearing loss problems.

Everywhere I turn, TRT is brought up and I have to explain to them it is bullshit and has never helped anyone.
Recently today, I had to state the fact to a brilliant pain doctor as he brought it up.

On the positive, I will be invited to his clinic and we will try all sorts of experimental stuff for my ultra severe noxacusis. Everything from TMS to voltage gated pathway drugs to applying for compassionate use drugs under development.

I will be sure to tell if I experience any success

 

[SmallRonnie]

I am so sorry to hear that. I know I'm dealing with tinnitus that is reactive to sounds. Particularly any effort I try to make to mask it.

I understand from others on the site that it may be a form of hyperacusis even though I don't have any of the other symptoms. I guess I'm not really sure how I would treat that. Particularly since sound therapy seems to be what is prescribed for hyperacusis.

I have reactive tinnitus too but only to my PC which I just moved to another room.

Reactive tinnitus is for sure difficult to manage and frustrating. I'm currently trying a lot of different things, like supplements, and I feel a little better but not sure if it was just time or something else.

 

[Forever hopeful]

I have reactive tinnitus too but only to my PC which I just moved to another room.

Reactive tinnitus is for sure difficult to manage and frustrating. I'm currently trying a lot of different things, like supplements, and I feel a little better but not sure if it was just time or something else.

I just want to be able to mask it sometimes.

 

[CRGC]

My experience with pain hyperacusis is that I get it mostly in a delayed fashion, after exposure to what could be called "normal" sound volumes. The pain is usually a dull ache in and around the ear, jaw pain, headache and fatigue, sometimes accompanied by sharper jabs of pain in the ear and a feeling of muscles spasming. My condition is very difficult to deal with as I can't seem to figure out what will trigger the pain. The pain tends to last for hours after sound exposure, and my sensitivity can be worse for days after a bad flare-up.

I've been good at protecting my ears from objectively loud sounds so maybe that's why I haven't experienced much instant "noxacusis" pain.

I hate this condition.

 

[SmallRonnie]

My experience with pain hyperacusis is that I get it mostly in a delayed fashion, after exposure to what could be called "normal" sound volumes. The pain is usually a dull ache in and around the ear, jaw pain, headache and fatigue, sometimes accompanied by sharper jabs of pain in the ear and a feeling of muscles spasming. My condition is very difficult to deal with as I can't seem to figure out what will trigger the pain. The pain tends to last for hours after sound exposure, and my sensitivity can be worse for days after a bad flare-up.

I've been good at protecting my ears from objectively loud sounds so maybe that's why I haven't experienced much instant "noxacusis" pain.

I hate this condition.

I have the same delayed reaction too. Totally agree with how it's frustrating not knowing exactly what might have caused the flare up.

As I said in another thread, I also have TMJ which might be making it worse but mine was 100% caused by loud noise exposure.

It's so frustrating how it changes so often. Still hopeful it will be manageable.

Hoping to get a bunch of supplements to try soon.

ARA-290 is one of my next big hopes. Going to order a bunch of it soon and try for a month or so.

 

[Utdmad89]

I have the same delayed reaction too. Totally agree with how it's frustrating not knowing exactly what might have caused the flare up.

As I said in another thread, I also have TMJ which might be making it worse but mine was 100% caused by loud noise exposure.

It's so frustrating how it changes so often. Still hopeful it will be manageable.

Hoping to get a bunch of supplements to try soon.

ARA-290 is one of my next big hopes. Going to order a bunch of it soon and try for a month or so.

How are you now?

 

[HighleyTall]

A lot of these pains felt deep and nerve related.

Very good observation because it is nerve pain, combined with afferent type II (OHC) nociception.