I don't even remember how long this has been going on, but at least 10 years, probably longer. I am extremely sensitive to a lot of sounds, particularly high or mid range sounds. They do not even have to be loud at all, in fact, the worst are soft sounds. A piece of silverware gently knocking against a plate, paper or plastic being crinkled, certain people's voices, etc. They cause my eardrum to spasm once (at the onset of the sound).
It is not a rhythmic thing, it does not occur by itself, it is only induced by sound.
It is only on the left side. Never on the right.
It is not painful, per se, but it is incredibly annoying and makes it difficult to focus on or enjoy things when it is happening. Quite often while watching a movie, I will simply be sitting there with my left hand holding the cartilage of my ear shut.
It is difficult to 100% predict. This has been the most frustrating aspect of it, because I have had several instances of going to ENT and having a difficult time even reproducing the symptoms using various kinds of sound stimulus, even though in my everyday life it seems impossible to escape. It is like I am the victim of some awful cosmic joke where the problem only manifests when there are no witnesses.
It is *not* in my head. It does get better and worse at times, but it never goes away. I will go through periods where it is all I can focus on for weeks at a time and my jaw actually gets sore and irritated from clenching due to the constant barrage of spasms and just generally knowing certain sounds are going to trigger it and eventually I will sort of learn to relax about it and it won't be so everpresent, but it is *never* gone. I will have mostly ignored it and I will still feel it happen. At my best I can not get hung up on this isolated spasms and not descend back into the nightmare of it consuming my every waking moment.
Ear plugs do *not* really work. I have a set of really intense ear protection headphones (the kind you wear when you go to a shooting range) and those will mostly stop it, but that should tell you something about the sensitivity level here, as you can hardly hear anything with those on. Ear plugs only accomplish the additional annoyance of having ear plugs in and do not stop the symptoms, the ear is simply too sensitive and the required sounds, as I said, can be incredibly soft.
As I said, I have seen several otolaryngologists. A few of them just told me I have sensitive hearing and dismissed this outright. This is not "sensitive hearing" or it would not be present in both ears. It is a distinct sensation that exhibits certain distinct characteristics. I am a musician and audio engineer (which makes this even worse, because it impacts what I do and love, but it also gives me some tools and framework for understanding this). I can practically measure the exact amount of millisecond delay between the stimulus sound and the spasm (around 30 ms). I also determined a rough frequency range that is the worst (about 2.5-6 khz). It mostly affects sounds with a distinct transient, but sustained tones in the range described are capable of producing it as well.
There is one otolaryngologist who has humored me and seems to believe that what I'm saying is true and has not dismissed my symptoms as me being crazy or sensitive. But at the same time he has not been able to objectively observe anything. He has on two occasions attempted to look at the ear from the outside to see if he can visually confirm abnormal contractions but has not seen any. He has said that he is willing to perform a lysis of the external tendons and he thinks that would eliminate my symptoms but I am *incredibly* wary of this procedure for two reasons: 1. I have read that some people have this done and their symptoms end up being even worse or have other problems 2. Without him being able to confirm where the problem is, I am reluctant to sever things irreversibly and not even have solved the problem.
A couple of other pieces of information:
I have patulous eustacian tube in my right ear (opposite side as the above-described problem). I feel like sometimes this problem is worse when the patulous eustacian tube is worse, but there is not an exact correlation as far as I can tell. I do wonder whether some of my coping strategies for the PE have exacerbated something in my palatal areas that have caused this problem. These coping strategies involve inhaling quickly through my nose to cause negative pressure to close the PE and just generally tense palatal habits.
I can usually manage to stop or almost stop the symptoms entirely by holding my breath, tensing the muscles in the back of my nose so that no air can come in, sucking in the pressure such that the inside of my head feels like a vacuum and tensing my throat/ear muscles almost as though I were doing a really intense yawn. But obviously I can't hold that for very long.
My left ear/jaw joint is kind of messed up. I was in an accident when I was 17 where I broke most of the bones in my face. I did not break this particular area, but I do think that my jaw was dislocated and this is probably how that happened. My bite is off and, most importantly, the way the jaw now sits on the left side is such that it is not hard for it to feel like it is "catching" on the inside of my ear cartilage. If I bite even a little off angle, I can hear it kind of grinding on it, and if I try to actuate my jaw while any pressure is on my ear from the outside (like wearing headphones or even lightly pressing on it with my hand), it can "catch" entirely and there is an unpleasant feeling almost like a rubber band being snapped as the cartilage kind of skips over the edge of the jaw. Using my hand to pull the ear slightly out or back alleviates this, meaning I can actuate my jaw freely and it is not unpleasant. I am not sure if this is related at all to the problem but reading about the trigeminal nerve and where it is located has made me wonder for quite some time if this is the entire cause of the problem.
So that is a lot to read. If you made it this far, thank you. I basically don't know what to do. I am discouraged at the lack of attention various doctors have given me. I am afraid to get the only surgery that has thus far been proposed because I worry that it won't solve the problem or it will make things worse. I don't know if I should pursue the jaw angle (I did see a TMJ doctor once who told me I have "mild" TMJ but when asked whether it would cause hearing sensitivity was very dismissive of the possibility). All I know is that when this gets bad I feel like I just can't live with it any more. I manage to kind of hide from things until it gets a little better and then I try not to let it distract me and pull me back down and sometimes I manage for a short time but then inevitably it comes back and destroys me again. I can't keep doing this for the rest of my life. I sometimes feel like if I didn't have a family or any pets I would just kill myself even though I'm not at all suicidal.
Does this make sense to anyone? What would you do if you were me?
It is not a rhythmic thing, it does not occur by itself, it is only induced by sound.
It is only on the left side. Never on the right.
It is not painful, per se, but it is incredibly annoying and makes it difficult to focus on or enjoy things when it is happening. Quite often while watching a movie, I will simply be sitting there with my left hand holding the cartilage of my ear shut.
It is difficult to 100% predict. This has been the most frustrating aspect of it, because I have had several instances of going to ENT and having a difficult time even reproducing the symptoms using various kinds of sound stimulus, even though in my everyday life it seems impossible to escape. It is like I am the victim of some awful cosmic joke where the problem only manifests when there are no witnesses.
It is *not* in my head. It does get better and worse at times, but it never goes away. I will go through periods where it is all I can focus on for weeks at a time and my jaw actually gets sore and irritated from clenching due to the constant barrage of spasms and just generally knowing certain sounds are going to trigger it and eventually I will sort of learn to relax about it and it won't be so everpresent, but it is *never* gone. I will have mostly ignored it and I will still feel it happen. At my best I can not get hung up on this isolated spasms and not descend back into the nightmare of it consuming my every waking moment.
Ear plugs do *not* really work. I have a set of really intense ear protection headphones (the kind you wear when you go to a shooting range) and those will mostly stop it, but that should tell you something about the sensitivity level here, as you can hardly hear anything with those on. Ear plugs only accomplish the additional annoyance of having ear plugs in and do not stop the symptoms, the ear is simply too sensitive and the required sounds, as I said, can be incredibly soft.
As I said, I have seen several otolaryngologists. A few of them just told me I have sensitive hearing and dismissed this outright. This is not "sensitive hearing" or it would not be present in both ears. It is a distinct sensation that exhibits certain distinct characteristics. I am a musician and audio engineer (which makes this even worse, because it impacts what I do and love, but it also gives me some tools and framework for understanding this). I can practically measure the exact amount of millisecond delay between the stimulus sound and the spasm (around 30 ms). I also determined a rough frequency range that is the worst (about 2.5-6 khz). It mostly affects sounds with a distinct transient, but sustained tones in the range described are capable of producing it as well.
There is one otolaryngologist who has humored me and seems to believe that what I'm saying is true and has not dismissed my symptoms as me being crazy or sensitive. But at the same time he has not been able to objectively observe anything. He has on two occasions attempted to look at the ear from the outside to see if he can visually confirm abnormal contractions but has not seen any. He has said that he is willing to perform a lysis of the external tendons and he thinks that would eliminate my symptoms but I am *incredibly* wary of this procedure for two reasons: 1. I have read that some people have this done and their symptoms end up being even worse or have other problems 2. Without him being able to confirm where the problem is, I am reluctant to sever things irreversibly and not even have solved the problem.
A couple of other pieces of information:
I have patulous eustacian tube in my right ear (opposite side as the above-described problem). I feel like sometimes this problem is worse when the patulous eustacian tube is worse, but there is not an exact correlation as far as I can tell. I do wonder whether some of my coping strategies for the PE have exacerbated something in my palatal areas that have caused this problem. These coping strategies involve inhaling quickly through my nose to cause negative pressure to close the PE and just generally tense palatal habits.
I can usually manage to stop or almost stop the symptoms entirely by holding my breath, tensing the muscles in the back of my nose so that no air can come in, sucking in the pressure such that the inside of my head feels like a vacuum and tensing my throat/ear muscles almost as though I were doing a really intense yawn. But obviously I can't hold that for very long.
My left ear/jaw joint is kind of messed up. I was in an accident when I was 17 where I broke most of the bones in my face. I did not break this particular area, but I do think that my jaw was dislocated and this is probably how that happened. My bite is off and, most importantly, the way the jaw now sits on the left side is such that it is not hard for it to feel like it is "catching" on the inside of my ear cartilage. If I bite even a little off angle, I can hear it kind of grinding on it, and if I try to actuate my jaw while any pressure is on my ear from the outside (like wearing headphones or even lightly pressing on it with my hand), it can "catch" entirely and there is an unpleasant feeling almost like a rubber band being snapped as the cartilage kind of skips over the edge of the jaw. Using my hand to pull the ear slightly out or back alleviates this, meaning I can actuate my jaw freely and it is not unpleasant. I am not sure if this is related at all to the problem but reading about the trigeminal nerve and where it is located has made me wonder for quite some time if this is the entire cause of the problem.
So that is a lot to read. If you made it this far, thank you. I basically don't know what to do. I am discouraged at the lack of attention various doctors have given me. I am afraid to get the only surgery that has thus far been proposed because I worry that it won't solve the problem or it will make things worse. I don't know if I should pursue the jaw angle (I did see a TMJ doctor once who told me I have "mild" TMJ but when asked whether it would cause hearing sensitivity was very dismissive of the possibility). All I know is that when this gets bad I feel like I just can't live with it any more. I manage to kind of hide from things until it gets a little better and then I try not to let it distract me and pull me back down and sometimes I manage for a short time but then inevitably it comes back and destroys me again. I can't keep doing this for the rest of my life. I sometimes feel like if I didn't have a family or any pets I would just kill myself even though I'm not at all suicidal.
Does this make sense to anyone? What would you do if you were me?
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