Loudness Hyperacusis and a "Cookie Bite" Audiogram

[Orions Pain]

Someone who has had quite a journey with cochlear implants shared an interesting experience. I'm going to summarize it to my best ability because I have 0 knowledge about cochlear implants.

Basically, to me it sounded like with checking their hearing, they discovered there were some issues with the patient's mid range hearing. They don't say exactly what it was, but that they were "astonished". (According to google, mid-range hearing is considered 500 Hz - 2000 Hz for those who are curious). When their audiologist turned up their mid-range hearing, adding a bit more treble, the higher sounds were no longer hurting. There was no "balance", and restoring that balance helped significantly.

I thought this was interesting because this is similar to what I experience. As many with hyperacusis, I have great hearing in the high frequencies (on a standard audiogram/not extended), and no significant loss at the low frequencies. I have "loudness" hyperacusis in a sense that certain sounds are overwhelmingly loud. For example a chip bag being crinkled in a silent room. I do have pain as well but more in a sense of trigeminal nerve irritation. Anyways, while my audiogram doesn't show significant loss, my hearing does take a dip around 3 kHz, then again even lower at 4 kHz, and then it goes back up and flatlines. I don't listen to music much but when I have in the past, it no longer sounds the same. I don't feel like I miss words or notes, but it just sounds less vibrant, more flat and weird.

It is my understanding that there are many here who have "pain" hyperacusis or noxacusis, but no loudness hyperacusis. I thought it would be interesting to see how many of us who have "loudness" hyperacusis also have an audiogram in a "cookie bite" sort of shape, where it's normal, then takes a dip and resembles a bite out of a cookie, and then goes back up. My hope would be that with regenerative meds, those dips would be filled in and it could alleviate some of my hyperacusis & tinnitus. My tinnitus isn't super high pitched (for context).

 

[weab00]

Someone who has had quite a journey with cochlear implants shared an interesting experience. I'm going to summarize it to my best ability because I have 0 knowledge about cochlear implants.

Basically, to me it sounded like with checking their hearing, they discovered there were some issues with the patient's mid range hearing. They don't say exactly what it was, but that they were "astonished". (According to google, mid-range hearing is considered 500 Hz - 2000 Hz for those who are curious). When their audiologist turned up their mid-range hearing, adding a bit more treble, the higher sounds were no longer hurting. There was no "balance", and restoring that balance helped significantly.

I thought this was interesting because this is similar to what I experience. As many with hyperacusis, I have great hearing in the high frequencies (on a standard audiogram/not extended), and no significant loss at the low frequencies. I have "loudness" hyperacusis in a sense that certain sounds are overwhelmingly loud. For example a chip bag being crinkled in a silent room. I do have pain as well but more in a sense of trigeminal nerve irritation. Anyways, while my audiogram doesn't show significant loss, my hearing does take a dip around 3 kHz, then again even lower at 4 kHz, and then it goes back up and flatlines. I don't listen to music much but when I have in the past, it no longer sounds the same. I don't feel like I miss words or notes, but it just sounds less vibrant, more flat and weird.

It is my understanding that there are many here who have "pain" hyperacusis or noxacusis, but no loudness hyperacusis. I thought it would be interesting to see how many of us who have "loudness" hyperacusis also have an audiogram in a "cookie bite" sort of shape, where it's normal, then takes a dip and resembles a bite out of a cookie, and then goes back up. My hope would be that with regenerative meds, those dips would be filled in and it could alleviate some of my hyperacusis & tinnitus. My tinnitus isn't super high pitched (for context).

Did you get an extended audiogram?

 

[Orions Pain]

Did you get an extended audiogram?

I have not gotten an extended audiogram.

 

[100Hz]

Someone who has had quite a journey with cochlear implants shared an interesting experience. I'm going to summarize it to my best ability because I have 0 knowledge about cochlear implants.

Basically, to me it sounded like with checking their hearing, they discovered there were some issues with the patient's mid range hearing. They don't say exactly what it was, but that they were "astonished". (According to google, mid-range hearing is considered 500 Hz - 2000 Hz for those who are curious). When their audiologist turned up their mid-range hearing, adding a bit more treble, the higher sounds were no longer hurting. There was no "balance", and restoring that balance helped significantly.

I thought this was interesting because this is similar to what I experience. As many with hyperacusis, I have great hearing in the high frequencies (on a standard audiogram/not extended), and no significant loss at the low frequencies. I have "loudness" hyperacusis in a sense that certain sounds are overwhelmingly loud. For example a chip bag being crinkled in a silent room. I do have pain as well but more in a sense of trigeminal nerve irritation. Anyways, while my audiogram doesn't show significant loss, my hearing does take a dip around 3 kHz, then again even lower at 4 kHz, and then it goes back up and flatlines. I don't listen to music much but when I have in the past, it no longer sounds the same. I don't feel like I miss words or notes, but it just sounds less vibrant, more flat and weird.

It is my understanding that there are many here who have "pain" hyperacusis or noxacusis, but no loudness hyperacusis. I thought it would be interesting to see how many of us who have "loudness" hyperacusis also have an audiogram in a "cookie bite" sort of shape, where it's normal, then takes a dip and resembles a bite out of a cookie, and then goes back up. My hope would be that with regenerative meds, those dips would be filled in and it could alleviate some of my hyperacusis & tinnitus. My tinnitus isn't super high pitched (for context).

I saw this as well, it was interesting that it sort of implied that by filling in the missing middle range gap with the implant it appeared to address the hearing imbalance and fix the hyperacusis. Its a good sign for FX322. I can't remember if loudness or pain hyperacusis was his main complaint but he said it definitely addressed the pain.

My audiogram isn't cookie bite shape though. It starts dipping at 6k down to 25db at 8K (not sure about UHF yet).

 

[serendipity1996]

Someone who has had quite a journey with cochlear implants shared an interesting experience. I'm going to summarize it to my best ability because I have 0 knowledge about cochlear implants.

Basically, to me it sounded like with checking their hearing, they discovered there were some issues with the patient's mid range hearing. They don't say exactly what it was, but that they were "astonished". (According to google, mid-range hearing is considered 500 Hz - 2000 Hz for those who are curious). When their audiologist turned up their mid-range hearing, adding a bit more treble, the higher sounds were no longer hurting. There was no "balance", and restoring that balance helped significantly.

I thought this was interesting because this is similar to what I experience. As many with hyperacusis, I have great hearing in the high frequencies (on a standard audiogram/not extended), and no significant loss at the low frequencies. I have "loudness" hyperacusis in a sense that certain sounds are overwhelmingly loud. For example a chip bag being crinkled in a silent room. I do have pain as well but more in a sense of trigeminal nerve irritation. Anyways, while my audiogram doesn't show significant loss, my hearing does take a dip around 3 kHz, then again even lower at 4 kHz, and then it goes back up and flatlines. I don't listen to music much but when I have in the past, it no longer sounds the same. I don't feel like I miss words or notes, but it just sounds less vibrant, more flat and weird.

It is my understanding that there are many here who have "pain" hyperacusis or noxacusis, but no loudness hyperacusis. I thought it would be interesting to see how many of us who have "loudness" hyperacusis also have an audiogram in a "cookie bite" sort of shape, where it's normal, then takes a dip and resembles a bite out of a cookie, and then goes back up. My hope would be that with regenerative meds, those dips would be filled in and it could alleviate some of my hyperacusis & tinnitus. My tinnitus isn't super high pitched (for context).

I think it would also be great if the interaction between loudness and pain hyperacusis were studied more in depth as they seem to commonly co-exist - and sometimes it can feel hard to disentangle the two, just speaking from my own experience.

There's definitely certain sounds for me e.g the kitchen timer going off that just sound really jarring and full of harsh treble. Also even my phone on speaker at the lowest volume feels very trebly and harsh and just too loud and jarring. I instinctively want to turn the volume down lmao.

I feel like I should get an extended audiogram at some point too.

 

[Lucifer]

I saw this as well, it was interesting that it sort of implied that by filling in the missing middle range gap with the implant it appeared to address the hearing imbalance and fix the hyperacusis. Its a good sign for FX322. I can't remember if loudness or pain hyperacusis was his main complaint but he said it definitely addressed the pain.

I still believe that those who have loudness hyperacusis also experience pain hyperacusis as well but just at lower decibel levels compared to normal people.

@Orions Pain thanks for posting about that cochlear implant patient whose hyperacusis improved. This made me feel positive that FX-322 will work in its current drug delivery form if the pain hyperacusis is due to missing frequencies in the upper and middle frequencies.

 

[serendipity1996]

I still believe that those who have loudness hyperacusis also experience pain hyperacusis as well but just at lower decibel levels compared to normal people.

@Orions Pain thanks for posting about that cochlear implant patient whose hyperacusis improved. This made me feel positive that FX-322 will work in its current drug delivery form if the pain hyperacusis is due to missing frequencies in the upper and middle frequencies.

Yeah this will be interesting to explore further. As I recall Bryan Pollard saying, he's come across quite a number of people who have loudness with no pain but it's not common to have pain and no loudness.

 

[100Hz]

One of the best things about this gu'ys story is that he says he can now listen to music again. I always thought cochlear implants were very basic in terms of sound processing but it sounds like newer ones are becoming able to produce much higher quality sound.

 

[Lucifer]

One of the best things about this gu'ys story is that he says he can now listen to music again. I always thought cochlear implants were very basic in terms of sound processing but it sounds like newer ones are becoming able to produce much higher quality sound.

When FX-322 gets rid of pain and loudness hyperacusis I'll be so happy to be able to enjoy my life again. I think we can be more optimistic that FX-322 would work with both pain and loudness hyperacusis if the reason for causing this is due to the underlying issues in the ear such as hair cells and synapses. There's proof that FX-322 does restore hair cells and synapses where there is hair cell loss.

 

[weab00]

The CI anecdote does make me hopeful that restoring hearing also addresses hyperacusis.

When FX-322 gets rid of pain and loudness hyperacusis I'll be so happy to be able to enjoy my life again. I think we can be more optimistic that FX-322 would work with both pain and loudness hyperacusis if the reason for causing this is due to the underlying issues in the ear such as hair cells and synapses. There's proof that FX-322 does restore hair cells and synapses where there is hair cell loss.

I'm trying to set my expectations, but if FX-322 could cure (a bold word) both pain and loudness I would be fucking elated.

 

[serendipity1996]

The CI anecdote does make me hopeful that restoring hearing also addresses hyperacusis.

I'm trying to set my expectations, but if FX-322 could cure (a bold word) both pain and loudness I would be fucking elated.

I reckon that FX-322 in conjunction with a synapse drug will get us the best results (just speaking generally). I reckon that if FX-322, for example, reduces your tinnitus but not fully then it could indicate we would also need a synapse drug.

 

[Orions Pain]

My main takeaway from this story is that filling in those missing areas of hearing alleviated some of his hyperacusis. I'm not sure if he has pain as in stabby pain, or pain as in it sounds too loud and uncomfortable so that's an important detail to this too.

Also it could be that the outcomes of CIs don't exactly match the outcomes of our actual ear. I honestly can't wait until research cracks the tinnitus/hyperacusis mystery once and for all. At this point I'm genuinely curios as to what exactly causes all of these strange sensations we all experience.

 

[tiredofit]

My main takeaway from this story is that filling in those missing areas of hearing alleviated some of his hyperacusis. I'm not sure if he has pain as in stabby pain, or pain as in it sounds too loud and uncomfortable so that's an important detail to this too.

Also it could be that the outcomes of CIs don't exactly match the outcomes of our actual ear. I honestly can't wait until research cracks the tinnitus/hyperacusis mystery once and for all. At this point I'm genuinely curios as to what exactly causes all of these strange sensations we all experience.

I was hoping so bad to be eligible to get a CI. I've had like 10 people tell me their hyperacusis went away after turning on the Cochlear Implant. I'm wasting my prime years with this condition.

 

[tiredofit]

I reckon that FX-322 in conjunction with a synapse drug will get us the best results (just speaking generally). I reckon that if FX-322, for example, reduces your tinnitus but not fully then it could indicate we would also need a synapse drug.

When is FX-322 definitely coming to the market? Will ENTs administer it only to people that have acquired SNHL or also to those born hard of hearing such as myself that have tinnitus and hyperacusis?

 

[Lucifer]

My main takeaway from this story is that filling in those missing areas of hearing alleviated some of his hyperacusis. I'm not sure if he has pain as in stabby pain, or pain as in it sounds too loud and uncomfortable so that's an important detail to this too.

Also it could be that the outcomes of CIs don't exactly match the outcomes of our actual ear. I honestly can't wait until research cracks the tinnitus/hyperacusis mystery once and for all. At this point I'm genuinely curios as to what exactly causes all of these strange sensations we all experience.

If pain and loudness hyperacusis are due to hair cell loss like the CI patient then FX-322 has a good chance at helping us as it restores both IHCs, OHCs and synapses where there is loss hair cells.

If it ends up being synapses then hopefully we have ended up with some hair cell loss to be able to regrow synapses to reduce or get rid of pain and loudness hyperacusis.

 

[Orions Pain]

I was hoping so bad to be eligible to get a CI. I've had like 10 people tell me their hyperacusis went away after turning on the Cochlear Implant

Did these people have acoustic traumas or hyperacusis from other issues besides being deaf or whatever warranted their CIs? I'm sure CIs come with risks too, there's no guarantee it will work perfectly.

 

[tiredofit]

Did these people have acoustic traumas or hyperacusis from other issues besides being deaf or whatever warranted their CIs? I'm sure CIs come with risks too, there's no guarantee it will work perfectly.

That I don't know but it can't be all too different from what we have, their CIs were warranted because they're deaf.

 

[100Hz]

I reckon that FX-322 in conjunction with a synapse drug will get us the best results (just speaking generally). I reckon that if FX-322, for example, reduces your tinnitus but not fully then it could indicate we would also need a synapse drug.

I'd say my best guess and most optimistic estimate of where we are (knowing what we know), is that you are right and that this combination will fix the damage, restore natural hearing, and really help out with tinnitus.

The sensitized type II afferents still worry me though and I can't ignore them, especially if its a permanent thing because they seem to be a significant defining part of noxacusis. So while you could have perfect tinnitus free hearing again you could still have pain. It's my only niggling doubt now. I pray it doesn't happen like this though, but if it does, then at least SPI-1005 and Xenon etc. will hopefully be able to do something for this lingering part of it.

The implant story is good though because it suggests that somehow by filling in the missing frequencies that it alleviated pain. It raises loads more questions though. Did the type II's become un-sensitized somehow? Are they now just less susceptible to ATP excitation? Is the patient being really careful with noise now anyway and hasn't properly tested they are cured because as we know when it comes to noxacusis there is 'cured' and 'properly cured'. This condition just gets weirder to understand!

 

[serendipity1996]

I'd say my best guess and most optimistic estimate of where we are (knowing what we know), is that you are right and that this combination will fix the damage, restore natural hearing, and really help out with tinnitus.

The sensitized type II afferents still worry me though and I can't ignore them, especially if its a permanent thing because they seem to be a significant defining part of noxacusis. So while you could have perfect tinnitus free hearing again you could still have pain. It's my only niggling doubt now. I pray it doesn't happen like this though, but if it does, then at least SPI-1005 and Xenon etc. will hopefully be able to do something for this lingering part of it.

The implant story is good though because it suggests that somehow by filling in the missing frequencies that it alleviated pain. It raises loads more questions though. Did the type II's become un-sensitized somehow? Are they now just less susceptible to ATP excitation? Is the patient being really careful with noise now anyway and hasn't properly tested they are cured because as we know when it comes to noxacusis there is 'cured' and 'properly cured'. This condition just gets weirder to understand!

Yeah - it's more a general statement and I think a synapse + hair cell drug should help with most of the cluster of symptoms resulting from NIHL: distortion, reactive tinnitus, dysacusis, etc, loudness hyperacusis. But I do share your uncertainty regarding noxacusis - I think just because we still know relatively little about it compared to the others. I think it really boils down to this issue of sensitisation, as you say, and what that implies in the long-term.

Do you have a link to this person's story by the way? It's definitely quite heartening to hear.

 

[100Hz]

I think it really boils down to this issue of sensitisation, as you say, and what that implies in the long-term.

Do you have a link to this person's story by the way? It's definitely quite heartening to hear.

Yeh and I think the Paul Fuchs research team are poking around in the right area now which is really good. I can't attach that link to this post for some reason but it's on the hyperacusis support and research page by Steve Meredith, posted 30th November.

 

[Orions Pain]

What do you guys think causes the burning sensations in our ear? Not burning from noise but that feeling of acid in the ear canal? It doesn't seem cochlear because it intensifies if I put in ear plugs and pull them out.

I also notice that if I touch my face in any way or like if I rest my jaw/chin on my hand it makes me flare really bad and I get that horrible cold burning and it seems to have nothing to do with sound.

 

[Loui]

@Orions Pain I also have loudness hyperacusis and nerve pain in my ears and face. I think tensor tympani is involved in the pain because sometimes I get fluttering in the ear. I don't get pain from noise. My tinnitus is more like a lower hiss and not a high pitch. I have an appointment with my audiologist next week and will ask for my audiogram to see if I also have a cookie bite I have done at least four hearing tests and according to the ENTs and audiologist I have great hearing. I have never asked for a copy of the audiogram though.

 

[100Hz]

What do you guys think causes the burning sensations in our ear? Not burning from noise but that feeling of acid in the ear canal? It doesn't seem cochlear because it intensifies if I put in ear plugs and pull them out.

I also notice that if I touch my face in any way or like if I rest my jaw/chin on my hand it makes me flare really bad and I get that horrible cold burning and it seems to have nothing to do with sound.

I think that's down to the middle ear / trigeminal nerve sensitization side of noxacusis. Probably not triggered directly by noise as the cochlea is, but by the middle ears response to what it thinks is noxious noise (tensor tympani in particular) that causes inflammation and triggers the trigeminal nerve and the muscles and facial parts that it innervates. That's Arnaud's side of the noxacusis mechanism webinar.

Although at this moment it is unclear because the trigeminal nerve innervates the cochlea so it could be cochlea inflammation that is stimulating the trigeminal nerve and all that it innervates from inside the cochlea.

 

[Orions Pain]

I think that's down to the middle ear / trigeminal nerve sensitization side of noxacusis. Probably not triggered directly by noise as the cochlea is, but by the middle ears response to what it thinks is noxious noise (tensor tympani in particular) that causes inflammation and triggers the trigeminal nerve and the muscles and facial parts that it innervates. That's Arnaud's side of the noxacusis mechanism webinar.

Although at this moment it is unclear because the trigeminal nerve innervates the cochlea so it could be cochlea inflammation that is stimulating the trigeminal nerve and all that it innervates from inside the cochlea.

What confuses me is in every support group for TTTS no one seems to have any burning or any face pain. Lots of acoustic trauma people there too, but I find that interesting. You'd think more would experience something similar.

 

[Orions Pain]

@Orions Pain I also have loudness hyperacusis and nerve pain in my ears and face. I think tensor tympani is involved in the pain because sometimes I get fluttering in the ear. I don't get pain from noise. My tinnitus is more like a lower hiss and not a high pitch. I have an appointment with my audiologist next week and will ask for my audiogram to see if I also have a cookie bite I have done at least four hearing tests and according to the ENTs and audiologist I have great hearing. I have never asked for a copy of the audiogram though.

I'm sorry you also have to deal with this. Did you have an acoustic trauma?

How would you describe the pain on your face?

 

[Loui]

I'm sorry you also have to deal with this. Did you have an acoustic trauma?

How would you describe the pain on your face?

I feel sorry for all of us suffering with this condition. I had no idea such a cruel condition could exist.

I suffered an acoustic trauma from a concert almost 2 years ago. I was doing quite well for a while but I guess I fell down in the dark hole again. Did you also suffer an acoustic trauma?

I have different sensations. Sometimes my ears feels inflamed, I have tightness in the eardrum, tingling and ache in my jaws.

I can live with this but I don't feel alive. I miss my old life everyday but I'm grateful that I still can work and continue with my everyday life. I miss being carefree, have hopes for the future and of course the silence.

 

[Trisoloran]

What do you guys think causes the burning sensations in our ear? Not burning from noise but that feeling of acid in the ear canal? It doesn't seem cochlear because it intensifies if I put in ear plugs and pull them out.

I also notice that if I touch my face in any way or like if I rest my jaw/chin on my hand it makes me flare really bad and I get that horrible cold burning and it seems to have nothing to do with sound.

As an extensive ear plug wearer for 13 years, especially the reusable foam kinds, that burning is simply irritation. The earplug is constantly expanding and the ear canal is pushing back against it. It's an unnatural object lodged in there, it happens.

To the second part of the this post, I've never experienced this.

To the thread starter post; I'll add this: I have moderate hearing loss in the middle tones and I have had a form of it since birth. Yes I needed speech class as a kid, I need to face someone to hear them, can guess words successfully 90% the of time and so on and so forth.

Sensitivity to noise combined with hearing loss is a condition called 'Recruitment':

http://www.hearingdevicecenter.com/sound-sensitivity-san-ramon-california.html

This sounds more like your condition, with certain frequencies being the worst.
I have that as well and I have a general collapsed tolerance (somewhere in the range 0f 70ish dB).

 

[Orions Pain]

I feel sorry for all of us suffering with this condition. I had no idea such a cruel condition could exist.

I suffered an acoustic trauma from a concert almost 2 years ago. I was doing quite well for a while but I guess I fell down in the dark hole again. Did you also suffer an acoustic trauma?

I have different sensations. Sometimes my ears feels inflamed, I have tightness in the eardrum, tingling and ache in my jaws.

I can live with this but I don't feel alive. I miss my old life everyday but I'm grateful that I still can work and continue with my everyday life. I miss being carefree, have hopes for the future and of course the silence.

I'm pretty sure concerts were the main culprit for me as well. I have very similar sensations with the ears feeling inflamed. Burning, TTTS, and very intrusive tinnitus. I had another acoustic incident about 9 months in and it intensified all of my existing symptoms and where I was previously able to leave the house as long as I didn't go to loud places, I no longer can and am basically housebound.

Also really hopeful that some sort of treatment will come within the next few years, that's what keeps me going.

 

[Orions Pain]

As an extensive ear plug wearer for 13 years, especially the reusable foam kinds, that burning is simply irritation. The earplug is constantly expanding and the ear canal is pushing back against it. It's an unnatural object lodged in there, it happens.

To the second part of the this post, I've never experienced this.

To the thread starter post; I'll add this: I have moderate hearing loss in the middle tones and I have had a form of it since birth. Yes I needed speech class as a kid, I need to face someone to hear them, can guess words successfully 90% the of time and so on and so forth.

Sensitivity to noise combined with hearing loss is a condition called 'Recruitment':

http://www.hearingdevicecenter.com/sound-sensitivity-san-ramon-california.html

This sounds more like your condition, with certain frequencies being the worst.
I have that as well and I have a general collapsed tolerance (somewhere in the range 0f 70ish dB).

I've worn ear plugs to sleep in for years and I've never experienced any sort of burning. I do agree it could be irritation but it's strange that before my hyperacusis/tinnitus started my ear never burned, nor even in the few months following the onset, and now it burns even if I haven't worn ear plugs for a while. I have the same type of burning basically all over my face.

My biggest "dip" is 15 dB at 3 kHz, since it doesn't even fall into "mild hearing loss" I'm not sure if it qualifies as recruitment? At least when I saw an audiologist I was told I have great hearing (which I know isn't true lol) but perhaps even that small dip is enough to make me sensitive?

 

[Born To Slay]

I think that's down to the middle ear / trigeminal nerve sensitization side of noxacusis. Probably not triggered directly by noise as the cochlea is, but by the middle ears response to what it thinks is noxious noise (tensor tympani in particular) that causes inflammation and triggers the trigeminal nerve and the muscles and facial parts that it innervates. That's Arnaud's side of the noxacusis mechanism webinar.

Although at this moment it is unclear because the trigeminal nerve innervates the cochlea so it could be cochlea inflammation that is stimulating the trigeminal nerve and all that it innervates from inside the cochlea.

Since SPI-1005 is coming soon, we should be hoping it's the second one, correct?