Apologies to everyone for not replying sooner. It's kind of hard to stay on top of all threads at times and I was putting this one on the back burner as there were so many people I wanted to reply to.
@FGG
So your symptoms are very similar to those I've had since day 1. My whole jaw radiates with pain from sound, but just like you it is always delayed. I know
@serendipity1996 has the same issue and it's something we've spoken about extensively. I personally subscribe to the idea that this is a secondary symptom of pain hyperacusis involving some kind of trigeminal neuralgia. My symptoms in this regard tend to improve if I just avoid sound entirely, but it can sometimes take days to weeks to recover from a trigeminal neuralgia setback. I also sometimes get headaches and I think any kind of facial pain would fall under the trigeminal neuralgia umbrella.
When people say they have pain hyperacusis though, I don't assume they necessarily have these symptoms. My first thought when someone says they have pain hyperacusis is that they feel instant, short-term pain, like being stabbed in the ear, from sound (which is what I experience). This pain ends when the stimulus ends, which is why I pressed the question about Liberman's definition of annoyance hyperacusis (the "discomfort" ending when the stimulus ends). I should say that though that depending on the severity and length of the sound, this short-term pain may be replaced by a dull, sore pain. Additionally, the ear itself becomes temporarily more sensitive – my LDL becomes immediately lowered. And usually trigeminal neuralgia follows within hours if not minutes.
Also, I have had some fluttering as well, which was at its worst in the very beginning and has improved substantially with time. I know some others experience some kind of ear "burning". I've only experienced this once and if I had to describe it, I would say it felt like the burning was more in my ear canal than in the middle or inner ear.
I also experience a range of emotional/psychological symptoms as well, and I'll come on to those more when I reply to
@Zugzug.
Our symptoms obviously raise a lot of questions regarding the pathology here. My understanding is that the trigeminal nerve innervates the middle ear, so to your point it would suggest that the muscles in the middle ear are being overworked and there's some kind of dysfunction going on. I should say though that I came across a study which suggested the TGN may also innervate the cochlea. I'd need to find it as I don't recall seeing any other research to back this claim up.
Finally, in the interests of exchanging notes, I've also had my fair share of spinal problems. I have some slight degeneration in one of my lower disks that is pinching on my spinal cord that has given me chronic back pain for years and I also have chronic neck strain from excessive computer use.
@__nico__
We are in the dark ages. Jastreboff and the sound therapy dogma has caused irreparable damage. We need to radically and specifically define our etiologies, especially to the medical world, to make up for the damage done, so that they know the right questions to ask
Agreed, and this is very much why I started this thread, just to get a conversation going.
@Zugzug
Obviously my initial post touched a nerve and I'm sorry again for that. What I was trying to get across was that my symptoms of what I call "pain" seem to fit in well with Liberman's description of what he calls "annoyance": the
discomfort ending when the stimulus ends. I just find this interesting because I would argue that "discomfort" can be interpreted to be some kind of degree of pain where both discomfort and pain sit on the same spectrum, just in different places. Additionally, pain hyperacusis, rightly or wrongly, is defined to occur in those who don't experience normal LDL thresholds of 120dB, and LDL of course stands for loudness
discomfort level. So it would appear then to me that the researchers themselves are kind of using these definitions and terms interchangeably and I find it very confusing. We need more clarity, and I think that can only be achieved by us all here discussing further.
Having said all this, my reading of your symptoms tells me that we may indeed have the same thing, although it does sound like you have it a lot worse. But I just want to focus on some your wording.
"It's a direct stimulation of the amygdala. It literally feels like the sound is tickling the amygdala and making it go nuts directly"
I totally get this. Whenever I hear a sound that puts me in "discomfort" let's say, I want to run a million miles away, suggesting then that my flight or fight mode is kicking in. And just like you, it's not as if I immediately calm down and feel ok once the sound is over. My heart rate goes up and I'm stressed as hell, wondering what damage may have been done, waiting for the trigeminal neuralgia to kick in.
This is why I was using the word "feel" as opposed to "sounds", because this was my way (and perhaps it was a poor choice of words) of trying to describe the emotional reaction I experience, even though objectively speaking I know the sound isn't any louder. I realise we're talking about subjective experience of loudness, but does it sound louder (to me personally)? I'm very torn about how to answer this in my personal case. On the one hand, yes it does, because my acoustic reflex kicks in with sounds of much lower volumes than before and I feel that instant stab of the ear (what I call pain hyperacusis, but maybe it is actually loudness/annoyance??). But at the same time, it doesn't sound like I've got a bucket over my head, nor do my footsteps sound like King Kong or Godzilla when I'm walking around. But having a bucket over my head pre-hyperacusis, although certainly loud, would never have caused the emotional experience I have now, because I wasn't feeling that immediate stab of the ears. If I were to use an analogy from audio engineering (I'm going to make another post about this soon), it's almost as if my ears natural compressor/limiter is broken.
It's very hard to describe what I'm saying here. Perhaps
@serendipity1996 can help me out with this, but I just want people to cast their minds back to their lives pre-hyperacusis and think of a moment when you were exposed to something you knew was very loud. As a though experiment, how would you describe your physiological/emotional experience then compared to now? I hope you take these comments in the spirit of good debate, I want to make it clear that I'm not trying to play down or gatekeep loudness hyperacusis at all because I think I myself may well have it. I'm just trying to understand what we're all going through and where we are similar and where we deviate, because I'm wondering whether people like me and you are experiencing the same thing but using different terminology to describe our symptoms.
I just want to make another point about the amygdala. I have read cases of war veterans with PTSD developing hyperacusis. It's interesting to me that I developed hyperacusis shortly after my father committed suicide, which has left me with my own PTSD issues. We know that the amygdala volume increases in PTSD patients and the hippocampus shrinks, so this is definitely something that has weighed on my mind for a while and what role the amygdala may play in some sufferers.
@Orions Pain
I hope I just answered your question about what I mean by "feels" above. I wouldn't say it feels like the kind of pressure one experiences when one is under water, but it does feel maybe like someone has just prodded my ear with a Q-tip, causing some kind of mechanical pressure that's instantly relieved when the stimulus ends.
@Diesel
Similarly to you and others I also deal much better with sound coming from cone speakers than small devices. As __nico__ has already stated, the smaller the speaker the more biased it tends to be towards the high end, and it's no secret that hyperacusis sufferers seem to suffer the most with high frequencies. Small speakers also tend to distort more, and distortion can generate high-frequency harmonics. Again, it's interesting to me that when you think about hearing loss, the first OHCs to die are typically those in the basal area of the cochlea. On this point, I would be curious to know if there's anyone out there with hyperacusis who has a perfect audiogram in the EHF range. Equally, I would like to know if there's anyone out there who has the opposite of what we all seem to have: an ultra-sensitivity to the low range that decreases towards the high range.
Member
