Hyperacusis without the Pain
- Thread starter Capricornus
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I don't know. The question is why you feel the need the cover your ears and walk away? Is it because they physically hurt you (hyperacusis/noxacusis) or is it because they disturb you on psychological level (misophonia)? Or is it because you are afraid of them (phonophobia)?
bill 112
Member
When people say pain,what do they mean by their pain exactly?Like you for instance,so you feel a hot burning in your ears,head how would you describe your pain?
Sharp stabbing pain that appears when I hear a sound above my tolerance. The pain is present alongside the stimuli. I wouldn't describe it as burning pain. I also have violent spasms from the tensor tympani upon sound stimuli. I don't know if the pain I'm experiencing is some kind of nerve pain caused by the nociceptors or if it's entirely mechanical in it's nature, i.e caused by muscles in the middle ear. I could also describe it as someone "shaking my brain" upon hearing a sound. But everyone seems to experience different kind of pain but when Hyperacusis Research had a poll on their website with the question "what sort of pain do you experience?", sharp stabbing pain was the most common. "I don't get pain" was the least common answer.
bill 112
Member
You basically just described exactly what I experience,my symptoms are quite similar to yours.
For me,if I'm let's say subjected to a sudden noise my brain gets a shock,like my brain gets zapped and it feels like my eardrum just got poked by a stick.
There's no immediate pain with it,just a shock/surge through my brain.
My head can feel stingy and hot after some of these exposures mainly along my neck with a pressure,like my head is being squeezed.
If I open let's say a packet of crisps,the sound causes these thumps in my ears over and over again along with popping and pressure in the back of my head.Im not sure if this pressure I'm feeling is from within the cochlea or if it's from the muscles tightening.Its so hard to know.
I don't think they are exactly alike. You say you don't have immediate pain but that's what I said I have. My head doesn't feel hot (altough I don't know how it would feel if I forced myself to withstand noise for a longer period). The last thing about the bag of crisp and the thumps seems quite similar but I don't have popping and pressure in the back of my head.
"if I'm let's say subjected to a sudden noise my brain gets a shock,like my brain gets zapped and it feels like my eardrum just got poked by a stick."
Wouldn't you describe this as immediate pain though?
bill 112
Member
The popping and pressure I think is from the middle ear muscle,as I sit here now my dog is walking across a wooden floor and the sound of his nails tapping across it are making both my ears thump in response to it.Just above my ears(look at the top of your ear,go up about an inch and a half and then back two inches)builds a pressure the more these thumps happen.Then the stinging burning feeling over my head begins after awhile originating from this place of pressure.Apparently the middle ear muscle can have an affect on your trigeminal nerve from what I've read.My face even begins to feel funny and tight with every thump.
I wouldn't call it immediate pain but more so a shock,very uncomfortable and the pain comes later or not at all.
I remember not so long ago I was experiencing this pressure and stinging pain that I mentioned above,I was sitting in my kitchen when my cousin laughed suddenly and my ears did another thump but this time it caused the pain to completely disappear and the head pressure along with it,for nearly 1 year in fact.
Your right though,I'm an idiot our sumptoms aren't the same so I don't even know why I said that,but I'm just trying to work out if the muscles in my ears are causing this pain and pressure.
I wouldn't call it immediate pain but more so a shock,very uncomfortable and the pain comes later or not at all.
I remember not so long ago I was experiencing this pressure and stinging pain that I mentioned above,I was sitting in my kitchen when my cousin laughed suddenly and my ears did another thump but this time it caused the pain to completely disappear and the head pressure along with it,for nearly 1 year in fact.
Your right though,I'm an idiot our sumptoms aren't the same so I don't even know why I said that,but I'm just trying to work out if the muscles in my ears are causing this pain and pressure.
Well I have severe H. Pain with strong sounds, but there's a middle range where all there is is uncomfortable vibration which obviously normal people don't have. And even on the painful sounds, there is accompanying vibration. There are plenty of ways hyperacusis can be without pain, like this one.
I agree with lapidus, and believe true hyperacusis can be painful. If you don't feel any pain in your ears with certain sounds that might cause irritation then I don't think its hyperacusis. I had very severe hyperacusis . Conversation with someone made my ears hurt and on many occasions had to ask people to please lower their voice. However, it was completely cured in 2 years wearing white noise generators as part of TRT. That was 20 years ago and the hyperacusis hasn't returned.
@Michael Leigh I have read some posts where you claim that a lot of people have H without knowing it (they have reactive T and so on). If H comes with pain, how come they don't know they have it? Also there are people with H that don't experience reactive T.
It's so complicated.
It's so complicated.
Good question Capricornus.
Like tinnitus hyperacusis comes in different levels of severity. It can be mild, moderate or severe. When people say their tinnitus in reactive to sounds, usually this causes some discomfort (irritation) I used the word "pain" but the pain can be defined as irritation or discomforting to the person. If you haven't read my post: Hyperacuis, As I see it. Please read it as it might be helpful.
Michael
I would only go as far as to distinguish between physical pain and psychological/psychosomatic pain. If you feel a physical discomfort and feels that the sound is physically uncomfortable that equals mild pain to me. If you are physically uncomfortable that's just another way of saying you're in mild pain.
Which is a bit odd since Dr. Nagler said to me that TRT can't treat pain hyperacusis and if I'm having pain from sounds, then it's not hyperacusis causing it and I should find a doctor who can figure out what's actually wrong with me. This post by him is now deleted for some reason.
I do get those but really rarely, only when listening to music. I always thought that when I had this this would worsen me for good. Hope they don't increase.
I already had those before all of this started but only when listening to a specific song...
Dr. Richard Salvi released a paper (it's on the forum somewher in the research section but I can't be bothered to find it) where he presents a hypothesis that everyone with T probably have H as well, just that the majority have it in such a mild form they don't even know it (the paper is about something else but this hypothesis gets touched upon briefly somewhere in the paper). This is true in my case. Thinking back, I have probably had mild H since 1999 up until 2013 when I gradually developed severe H. There's also a pretty recent brazilian study that came to the conclusion that people with T had lower LDLs than people without T which strengthens the idea.
That makes sense. Is a LDL test the only way to know if you have mild H? Also, may I ask if your severe H came as a result of mild H that wasn't "treated"?
Well, some "experts" say that 100db and up means no hyperacusis and some other claims that 90db and up means no hyperacusis. LDL test aren't really reliable in my opinion since a person with phonophobia would be misdiagnosed with hyperacusis because of an LDL test. I think one knows when one have H to be honest. But with mild H it's a bit trickier since then it's only actually loud/louder noises that you are sensitive to and we aren't exposed to those types of noises on a daily basis. I just remember that I really disliked listening loud stuff, like for example, live music in the school assembly hall at graduations and such. It didn't cause the same type of pain I have now but I thought it was too loud to be enjoyable and maybe even a bit uncomfortable/very mild pain. But I didn't think much of it and I didn't even know such a thing like hyperacusis even existed until 2013.
I have no clue what brought on my severe H and worsend T in 2013. Habitutaion to my T is my best guess. I was living a normal life when I probably shouldn't have.
bill 112
Member
I had H for two years(2012-2013)and didn't know I had it.
It came after a loud night at a club,I woke up with a tone going through my head,for the coming weeks I noticed I couldn't stand loud noise,at the time I thought it was me fearing this noise because of my T.Anyway a few months later and it was gone,noise didn't bother my anymore not even in the slightest but I did notice from there on out that loud places were extremely uncomfortable for me,like when I went to my cousins wedding they started playing loud ass music at the end of the night and I just couldn't stand it and I would just leave as I always did when things got really loud.I associated it with me being anxious around such levels because of my T and as such I did everything to avoid them.This trend continued for the next two years but when I look back it was most certainly mild H.
And I'm not the only one,I think I said it here before about the carpenter I was talking to who had T,but he too had mild H and didn't even know he had it or that such a thing even existed until I told him.
He was telling about his T but he eventually said"I tell ya,I can't stand the noise in the pub anymore,I don't know why but it's just too much for me now,am I going mad or what?"
Same story with my uncle Seamus,he had T all his life now from a shotgun blast as a child,he's been exposed to sooo much noise over the years unprotected like bars,horse racing festivals,concerts etc and it never got worse as a result,a miracle is what I tell him he is.
Last year he had a fall off of his bike whilst at a cycling event,he blacked out from exhaustion or something but either way he noticed that his T has gotton a bit louder since the incident.
He also told me that he can't sit in the pub for as long anymore,as it gets a little too much for him now and he also began using hearing protection with tools or if he's working near the road,something he hasn't done for over 40 years of his life.He thought it was just him,that it was all in his head because the T had gotton louder,I had to tell him that he's suffering from mild H,something that he too has never heard of before.
I think it comes down to this,if someone's H comes on gradually and stays somewhat mild they most likely won't even notice it,if it comes on suddenly after a bang then that's another story,your going to notice it following that event as it's usually quite bad after such an event but it may improve over time thereafter.
If you get H with pain then your going to notice,but again it's the same as above.
If H with pain comes on slowly and stays somewhat mild you might not really notice it,sometimes the pain is mild or comes and goes in between and usually people would associate it with something else like their neck or stress,you can see such evidence for that here.
If H with pain comes on suddenly after a bang your going to notice it,especially if it's bad where as everyday sounds are piercing you ear and causing pain,there's no way you wouldn't notice that.
Anyway that's my thoughts on the whole thing.
I have profound hearing loss in one ear, constant tinnitus, and hyperacusis with pain. If I had the hearing loss, constant tinnitus, and hyperacusis without pain-then I would be happy, happy, happy!
My H started progressively and at the beginning I thought I was getting deaf. Pressure would build up inside my ears and stay there for many days, and then maybe it got slightly better, and then increased again. Sometimes pressure did go away completely for some time, for a few days, and sounds would feel super loud, but they did not seem the same quality of sound as before, maybe due to some very slight hearing loss in the very high frequencies and maybe due to a slight distortion. Well, after many cycles of feeling "deafened" due to pressure and then hearing really loud when pressure is gone, it is very easy to lose the normal hearing sensations and the references of what normal sound is. In this sense, H could go unnoticed for a while, not diagnosed correctly or mistaken for some other hearing problem.
It seems like I have different kinds of H, so I'll talk about H without pain.
Some sounds just seem too much for me -- airplanes, trains, and motorcycles. They don't cause me pain but they're so loud to me that I instinctively feel the need to cover my ears.
Then there's the sensitivity to faraway sounds. At work, my desk used to be beside the window. I sat there for more than a year, and I never heard the honks of cars down below. I heard the occasional sirens but everyone sitting by the windows could hear them.
When I got H, I heard all the honking, screeching, squealing of vehicles. They weren't painful but so distracting. Because of that, I had to move my desk away from the window. So yeah, some sounds stand out to me, including the "S" sound when people speak.
Some sounds just seem too much for me -- airplanes, trains, and motorcycles. They don't cause me pain but they're so loud to me that I instinctively feel the need to cover my ears.
Then there's the sensitivity to faraway sounds. At work, my desk used to be beside the window. I sat there for more than a year, and I never heard the honks of cars down below. I heard the occasional sirens but everyone sitting by the windows could hear them.
When I got H, I heard all the honking, screeching, squealing of vehicles. They weren't painful but so distracting. Because of that, I had to move my desk away from the window. So yeah, some sounds stand out to me, including the "S" sound when people speak.
And here we are, nearly 2017, still trying to work out what "hyperacusis" should mean. I see posters at times saying how far we've come in understanding. No we haven't. Maybe we need a new terminology. One size certainly doesn't fit all.
bill 112
Member
I hate the way they try to differentiate the two,loudness Hyperacusis and Pain Hyperacusis when they're the very same entity only some experience pain where others don't.
When I first got H there was zero pain for over two years until it got worse and in came along pain with it.
So if these were two seperate entities then why did mine morph into the other?Things sounded too loud for me at first and were intolerable but there never was any pain to speak of,but now I've gotton even more sensitive and things are proper painful to me now,there's pain with sound.
So they way I look at it is this,H is H no matter what way you look at it,whether there's pain or not H is an extreme sensitivity to sound or a collapsed tolerance to sound,if you have H but experience pain then it is now termed Noxacusis,an increased sensitivity to sound or a collapsed tolerance to sound that also causes long lasting pain.
Hyperacusis-Decreased sound tolerance or extreme sensitivity to sound.
Noxacusis-Decreased sound tolerance or extreme sensitivity to sound that's accompanied by sound induced pain.
TTTS could be otalgic or not. It could be otalgic for a short period of time (2 seconds, 2 days...).
People who wrote on this thread seem to describe the symptoms of TTTS.
Could someone supposedly having "hyperacusis" explain me why he or she used that term instead of "TTTS"?
People who wrote on this thread seem to describe the symptoms of TTTS.
Could someone supposedly having "hyperacusis" explain me why he or she used that term instead of "TTTS"?
My thinking is that hyperacusis exists when the actual sound you perceive is distorted, over-amplified or in any other way changed from what you recall as "normal". Symptoms of TTTS are more likely to present as added symptoms over and above the changes to perceived sound, such as thumps, clicks, pain/ache/other discomfort coming along with or some time after being exposed to sounds (volume and/or frequency related). Because we still don't really know our causes that well, its hard to say if H and TTTS exist completely on the same continuum or whether they are interconnected but separate pathologies occurring in different locations. IOW: does all hyperacusis arise from inner ear and/or auditory nerve injury, and does TTTS occur as a deranged reaction of the hearing and limbic system to the mis-perception of sound at the central level, or is the sound altered at middle ear level through deranged middle-ear muscle function, causing the mis-perception of sound. Is the problem of sound perception one of delivery of the message, or interpretation of the message? is it a chook or is it an egg?
that's just how I think of it right now. Japongus is a poster who explores this area pretty intensively if you look up some of his stuff.
Because that's what I've been diagnosed with by audiologists. But I have TTTS too, or at least I'm pretty certain I have it but haven't been diagnosed with it. The audiologists and ENTs have sorta just gone "yeah, you might have that" when I've told them about it and haven't really been that interested in what I have to say. I don't know if it's my H causing my TTTS or my TTTS causing my H. Like @PaulBe said above, check out posts by @japongus
bill 112
Member
I have a theory on TTTS that I would like to add,not that it's a fact but kinda makes sense if you think about it.
We know the Tensor muscle contracts hard from high volumes of sound in a healthy individual,let's say a noise blast of 120db causes it to contract in healthy ears then what would cause it to contract in damaged ears?
The muscle is the brains way of protecting itself and the hearing from dangerous stimuli but if it's already been damaged maybe that threshold is now a lot lower,80db or 60db of noise is now considered damaging and the brain reacts by triggering the muscles to protect itself and the cochlea or auditory nerve.The ear can't handle 120db anymore but it can handle let's say 85db at certain frequencies,once you go over that threshold the muscle contracts to protect from further damaging an already damaged hearing system.
That's my theory on it,also a symptom of nerve damage is muscle spasms which would explain the flutters people experience here.
We know the Tensor muscle contracts hard from high volumes of sound in a healthy individual,let's say a noise blast of 120db causes it to contract in healthy ears then what would cause it to contract in damaged ears?
The muscle is the brains way of protecting itself and the hearing from dangerous stimuli but if it's already been damaged maybe that threshold is now a lot lower,80db or 60db of noise is now considered damaging and the brain reacts by triggering the muscles to protect itself and the cochlea or auditory nerve.The ear can't handle 120db anymore but it can handle let's say 85db at certain frequencies,once you go over that threshold the muscle contracts to protect from further damaging an already damaged hearing system.
That's my theory on it,also a symptom of nerve damage is muscle spasms which would explain the flutters people experience here.
I've thought down that path too Bill. If you think about it you can reason that an innate self-protecting system has to have thresholds within which it operates, and those thresholds must therefore change in response to changed circumstances. The whole human body is a mass of feedback loops inside a massive feedback loop and every system is invited. Most of this is self limiting (negative feedback) which maintains us safely in parking gear with the engine running most of the time (homeostasis, they call it).
With that in mind throw in the autonomic Limbic response that goes with untreated hyperacusis/tinnitus (which is what is killing you at the moment) and you have the makings of a positive feedback loop where constant escalation is the order of the day. Maybe this is why tenotomy works well in some people. An external circuit-breaker is needed and MEM tenotomy could be a quick fix assuming a skilled practitioner knows how to diagnose accurately and do it safely. (Just ask Japongus about the ease of finding such a practitioner).
This is also one of the tenets behind sound therapy, and why they say it doesn't really fly without the counselling part. It treats to large degree the Limbic component of what I'm thinking of as Tinitus/Hyperacusis Underdamping Disorder (THUD). (sorry, had to throw that in).
With that in mind throw in the autonomic Limbic response that goes with untreated hyperacusis/tinnitus (which is what is killing you at the moment) and you have the makings of a positive feedback loop where constant escalation is the order of the day. Maybe this is why tenotomy works well in some people. An external circuit-breaker is needed and MEM tenotomy could be a quick fix assuming a skilled practitioner knows how to diagnose accurately and do it safely. (Just ask Japongus about the ease of finding such a practitioner).
This is also one of the tenets behind sound therapy, and why they say it doesn't really fly without the counselling part. It treats to large degree the Limbic component of what I'm thinking of as Tinitus/Hyperacusis Underdamping Disorder (THUD). (sorry, had to throw that in).
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