I've suffered from hyperacusis in my left ear for over 12 years now. The severity comes and goes, but it's more or less always there. Sometimes it's not bad enough that I can kind of forget about it for a period, the length of which is highly variable. When it's bad, I really can't even listen to normal people's conversations and music will likely be fatiguing. Even doing every day tasks like washing the dishes or pretty much anything other than lying in bed with my head in a pillow will be really stressful. The left side of my head and jaw will just end up feeling raw from the reflexive clenching that I do as a result of this.
A little medical background:
* I was in a car accident years prior to developing this. I fractured most of the bones in my face, among other injuries. When I started getting out of bed a few weeks later, I immediately developed patulous Eustachian tube (PET) in my right ear which I've had ever since. It wasn't until years later that I developed the hyperacusis in my *left* ear. I've undergone many procedures to try to correct the PET with no success.
* My hyperacusis manifests as a fast twitch/click/spasm in the ear directly related to sound stimulus, usually anything with a transient, or even sustained sounds in the 2 kHz-6 kHz range. The stimulus can even be very quiet (rustling paper in the next room will do it). It isn't painful, per se, but it is uncomfortable and it's definitely annoying and distressing. I would liken it to "Chinese water torture" for the ear.
* I say that sound stimulus must be present but this is not 100% true. Fast movements of my head/neck can sometimes produce it, particularly craning my head forward and then quickly drawing it back upright.
* I have some sort of TMJ which affects the left ear. Namely, I can feel the cartilage of the ear actually "catching" on the jaw somewhere. When eating or speaking sometimes I can actually feel the cartilage kind of "popping" or slipping over some part of the jaw. If I put any external pressure on the outside structure of the ear it gets bad enough that it will actually catch on it, and the sensation as the cartilage pops over the jaw is something I can easily feel and hear. If I pull on the upper part of the ear outward/upward, this goes away, so it's like there is just not the normal amount of space between the outer structures of the ear and the jaw joint, if that makes sense, and pulling out relieves this tension (until I let go, of course). I don't know if this has anything to do with anything, but it has always felt like it means something.
* Humming seems to make it at least a little better. But I can't go around humming non-stop.
* I can sometimes get it to stop or at least lessen in severity by exerting extreme effort to pull the muscles of my face/ears/throat back, almost like I'm suspended in the middle of a really powerful yawn.
* Perhaps the most puzzling thing that I don't know how to explain (if I can explain any of it) is that, although the hyperacusis only affects the left ear, plugging *either* ear will greatly or entirely eliminate the problem. That is, if I put an ear plug in my right (unaffected ear, the one with the PET), the sound sensitivity of the left ear will stop or be reduced to a manageable level.
* I've seen several doctors over the last 12 year or so to try to treat this. What I've found is a frustrating apathy toward even diagnosing the problem. Basically they'll do a hearing test, then bang on some stuff in the office and look into my ear to see if they can see any activity in the tensor tympani (objective tinnitus). When they don't see that, they basically conclude that I just have sensitive hearing and I'm making a big deal out of it. In my reading about other similar cases, there are a bunch of other procedures that I know could be tried but have never been suggested to me. The best I got was a doctor who said he could lyse the tendons and that would "probably" solve the problem, but I also know from my reading that this is far from a guaranteed solution and that it can cause either hearing or other neurological problems.
I've had so much time to think about what all the evidence means and have never come to any real conclusions but a couple of thoughts are:
* The fact that I've got PET in one ear seems like it can't be a coincidence. I feel like over years of having PET I developed some sort of palatal sensitivity which caused problems in my left ear as well. This seems to be reinforced by the fact that activating my palatal muscles (see "yawn" above) and humming at least partially reduces the severity. The fact that plugging the right ear also helps seems to have something to do with this.
* The TMJ piece of the puzzle seems like it also means something but I'm not sure what. I asked a doctor once if that kind of thing could cause hearing sensitivity and he seemed incredibly doubtful.
I know this is a lot, so I'll come to the point with my questions.
* Has anyone here ever experienced this and come back from it?
* Do you have any experience with or know how I'd go about getting a botulinum injection into the tendons to try to at least diagnose whether the lysis surgery would be effective? The one doctor who volunteered to cut the tendons seemed to dismiss the injection as either too difficult or not worth trying, but I've read that other people have had this done. I don't really know where to start looking.
* Any success with re-entrainment, biofeedback, or similar things to help with this kind of thing?
* At this point I'm just overwhelmed and open to any suggestions that anyone would have. What should I try that I haven't already tried?
I really *have* to solve this. After living with this for over a decade, it has really eroded my mental health. As I said, it waxes and wanes and every time it gets bad I don't know how long it's going to be forefront in my attention, and honestly I start feeling suicidal. I'm an avid musician and I can't even listen to or make music when it gets like this. I can't talk to people or do anything. I end up walking around the house with bits of tissue stuck in my ears (I find it's more comfortable long term than most ear plugs). When I think about how much of my life I've already wasted on this and imagine going through the rest of my life like this, I just can't even take it. I'd be willing to spend my life savings and be homeless if it would fix this. Every time I get to this point I think about that surgery but I know that if it actually made things worse I would completely despair.
A little medical background:
* I was in a car accident years prior to developing this. I fractured most of the bones in my face, among other injuries. When I started getting out of bed a few weeks later, I immediately developed patulous Eustachian tube (PET) in my right ear which I've had ever since. It wasn't until years later that I developed the hyperacusis in my *left* ear. I've undergone many procedures to try to correct the PET with no success.
* My hyperacusis manifests as a fast twitch/click/spasm in the ear directly related to sound stimulus, usually anything with a transient, or even sustained sounds in the 2 kHz-6 kHz range. The stimulus can even be very quiet (rustling paper in the next room will do it). It isn't painful, per se, but it is uncomfortable and it's definitely annoying and distressing. I would liken it to "Chinese water torture" for the ear.
* I say that sound stimulus must be present but this is not 100% true. Fast movements of my head/neck can sometimes produce it, particularly craning my head forward and then quickly drawing it back upright.
* I have some sort of TMJ which affects the left ear. Namely, I can feel the cartilage of the ear actually "catching" on the jaw somewhere. When eating or speaking sometimes I can actually feel the cartilage kind of "popping" or slipping over some part of the jaw. If I put any external pressure on the outside structure of the ear it gets bad enough that it will actually catch on it, and the sensation as the cartilage pops over the jaw is something I can easily feel and hear. If I pull on the upper part of the ear outward/upward, this goes away, so it's like there is just not the normal amount of space between the outer structures of the ear and the jaw joint, if that makes sense, and pulling out relieves this tension (until I let go, of course). I don't know if this has anything to do with anything, but it has always felt like it means something.
* Humming seems to make it at least a little better. But I can't go around humming non-stop.
* I can sometimes get it to stop or at least lessen in severity by exerting extreme effort to pull the muscles of my face/ears/throat back, almost like I'm suspended in the middle of a really powerful yawn.
* Perhaps the most puzzling thing that I don't know how to explain (if I can explain any of it) is that, although the hyperacusis only affects the left ear, plugging *either* ear will greatly or entirely eliminate the problem. That is, if I put an ear plug in my right (unaffected ear, the one with the PET), the sound sensitivity of the left ear will stop or be reduced to a manageable level.
* I've seen several doctors over the last 12 year or so to try to treat this. What I've found is a frustrating apathy toward even diagnosing the problem. Basically they'll do a hearing test, then bang on some stuff in the office and look into my ear to see if they can see any activity in the tensor tympani (objective tinnitus). When they don't see that, they basically conclude that I just have sensitive hearing and I'm making a big deal out of it. In my reading about other similar cases, there are a bunch of other procedures that I know could be tried but have never been suggested to me. The best I got was a doctor who said he could lyse the tendons and that would "probably" solve the problem, but I also know from my reading that this is far from a guaranteed solution and that it can cause either hearing or other neurological problems.
I've had so much time to think about what all the evidence means and have never come to any real conclusions but a couple of thoughts are:
* The fact that I've got PET in one ear seems like it can't be a coincidence. I feel like over years of having PET I developed some sort of palatal sensitivity which caused problems in my left ear as well. This seems to be reinforced by the fact that activating my palatal muscles (see "yawn" above) and humming at least partially reduces the severity. The fact that plugging the right ear also helps seems to have something to do with this.
* The TMJ piece of the puzzle seems like it also means something but I'm not sure what. I asked a doctor once if that kind of thing could cause hearing sensitivity and he seemed incredibly doubtful.
I know this is a lot, so I'll come to the point with my questions.
* Has anyone here ever experienced this and come back from it?
* Do you have any experience with or know how I'd go about getting a botulinum injection into the tendons to try to at least diagnose whether the lysis surgery would be effective? The one doctor who volunteered to cut the tendons seemed to dismiss the injection as either too difficult or not worth trying, but I've read that other people have had this done. I don't really know where to start looking.
* Any success with re-entrainment, biofeedback, or similar things to help with this kind of thing?
* At this point I'm just overwhelmed and open to any suggestions that anyone would have. What should I try that I haven't already tried?
I really *have* to solve this. After living with this for over a decade, it has really eroded my mental health. As I said, it waxes and wanes and every time it gets bad I don't know how long it's going to be forefront in my attention, and honestly I start feeling suicidal. I'm an avid musician and I can't even listen to or make music when it gets like this. I can't talk to people or do anything. I end up walking around the house with bits of tissue stuck in my ears (I find it's more comfortable long term than most ear plugs). When I think about how much of my life I've already wasted on this and imagine going through the rest of my life like this, I just can't even take it. I'd be willing to spend my life savings and be homeless if it would fix this. Every time I get to this point I think about that surgery but I know that if it actually made things worse I would completely despair.
