- Apr 18, 2016
- 6
- Tinnitus Since
- 1992
- Cause of Tinnitus
- Unknown/Various/Ongoing/Subacute
Hi everyone! People here seem pretty awesome, so I thought I'd sign up this morning, since I need help and support for a recent, rapidly-escalating, extreme case of Tinnitus. You guys seem to know a lot, and I'm hoping you'll bend my ear (pun intended—maybe that will help!) with all your collective expertise. It's 5am here in Brooklyn, the moon has just set, the sun won't rise for another hour or so, and as I look out at Manhattan in the distance, everything is nice and dark and quiet...except for my %@(*#$^ tinnitus lol!! Anyway, let me see what I can tell you about what's going on. Really looking forward to your responses, stories, and opinions.
T and I are old friends. Thanks to sitting sideways at a killer King Crimson show in San Francisco in the 1990s, I received a gift of "objective tinnitus" in my right ear that I've had ever since. "Objective" means you only hear the ringing under certain circumstances like loud sounds, loud music, and/or audio in a certain frequency range. The damage was pretty bad and I've had to wear earplugs at all concerts and movie showings I've attended since then. No big deal…I got used to it after a few years. The part that was most upsetting had to do with my playing the piano (which I've been doing about 50 years now and enjoy quite a bit). The O-T (objective tinnitus, that is) really put a damper on that (oh dear another music pun). Lucky in NYC I found a really good piano tuner who voiced my piano so that *I didn't hear that frequency*—amazing or what? It's about an octave and a half of my hearing range that's affected, and he managed to reduce the harmonic overtones for that range in most of the affected notes; that really helped me.
T and I had another run-in when I got SSHL (Sudden sensorineural hearing loss) about five years ago, I think in the same (right) ear. Luckily, I did my research fast, found a great NYC doctor, and he gave me a decent Prednisone script (I think 60mg/day for 10 or 15 days). It completely got rid of the SSHL. Believe me, I would go see that guy again for anything hearing-related—in a heartbeat—but he doesn't take my ins and charges about $800 USD just to walk in the door.
Now I'll get up to speed on T's latest visit, as of a few months ago. No specific incident this time, just T getting a lot worse during this last winter, a number of perhaps significant lifestyle changes, and then suddenly a couple months ago I began to get T full blast, both ears, a lot of variation, and a bunch of other really nasty kind of neurological symptoms that I'll described in minute.
I've been seeing an ENT who has tentatively diagnosed me as having AIED (Autoimmune Inner Ear Disease). AIED has T and SSHL as part of its symptom set, as well as some other things. Here's a "short list" of some of the (usual) symptoms of AIED:
Progressive hearing loss in both ears
Typically will begin in one ear and gradually affect the other
Hearing loss may begin suddenly
Tinnitus (ringing or buzzing in ears)
Decrease in word recognition capability
Loss of balance (vestibular symptoms)
Degree of balance loss can change throughout the course of the disease
And by the way, before I forget, if you ever want to learn a ton about AIED, here is an amazing lecture by Dr. Jennifer Derebery, M.D of The House Clinic in Los Angeles:
I really cannot recommend this YT video enough. Even if you don't have AIED, she is so intelligent and compassionate…just listening to hear share her knowledge and answer questions from other doctors for about an hour was incredibly enlightening. It's all about the ears, and she really cares.
As far as my (current, extreme) T goes, it's changing all the time for me. Shifting back and forth from ear to ear, sometimes louder, sometimes softer, gets much louder when I talk too much (and lingers, really loud, for hours afterward)—but also, a lot of times I think it's "just" somatic tinnitus, since by adjusting either jaw I can immediately change/reduce/increase the T in that ear. What's up with that?
So, oh right, the other symptoms. Nasty stuff, but potentially important. For about six months I've had weird vestibular reactions to turning my head, bending over, stuff like that—impact to motion and perhaps blood supply to the cranium and lymph nodes, maybe the thyroid. I get dizzy, and I can't think quite as well. Not fun. (But it doesn't seem balance-related; I've never fallen over.) ALSO…I've had this really weird "fullness/inflammatory/swollen" sensation all around the back of my head between my ears, directly above my neck for the same amount of time (last four months). It's sort of like congestion of a head cold migrated and parked itself between my ears and just stayed there. Finally, hearing impairment. When the condition is really bad, I have a 40dB drop in both ears. Screeching subway brakes don't even faze me because they're not that audible. When the condition is moderate, however, everything sounds at the wrong volume, and low-frequency noises even from blocks away feel like a q-tip pushing on my eardrum. Just. So. Weird. Because of this last part, I can't play the piano at all anymore (even with earplugs). Even single notes are like a big, bad storm cloud pushing up again my ears, all sonic nuance stripped and MIA.
Get on Prednisone, right? Well, it does get rid of about half the symptoms. But it's no longer effective for the T, which is getting worse every day.
I've been on three courses of Prednisone so far these last two months, all of them arguably "lame." From what I understand the protocol for AIED is supposed to be 60mg/day for 30 days right away. But no one will listen to me on this. I had one doc give me a 5-day, 60mg/day; then another a 5-five 10mg/day; now I'm on a 10-day 30/mg a day. There's a two-fold problem here, according to AIED experts: (1) short-term bursts of steroids usually are insufficient (except as an aid in diagnosis) and may result in relapse (running out of time here, please someone hurry up and help me with this), and (2) withholding treatment for longer than three months may result in permanent hearing loss and the need for cochlear implant installation (um, yeah, that's exactly what's happening—will someone please wake up and do what's right before I go deaf?).
Ah, what else: my eating changed a lot over the winter. I gained weight from eating a lot of protein and oils and have been on way too much sugar and salt. I stopped exercising. I've been under a lot of stress. The good part of my diet is that I eat a ton of vegetables and just the right amount of roughage, so GI-wise I have been really healthly.
OK, tests…I had an Electrocochleography (ECOG), and they said it's negative - that supposedly rules out hydrops and Ménière's disease, and according to my (STBX) ENT, rules out AIED as well. (Um…what? But you thought that was what it was.) I get an MRI tomorrow.
I'm still looking for a rheumatologist to investigate the auto-immune deficiency angle, and I'm trying out a new ENT in a few weeks. Meanwhile, I'm gonna try to scrounge up funds somehow (yet another CC?) so I can see that really good doc in NYC who knows all about SSHL, AIED, and all these weird things.
Thoughts?
T and I are old friends. Thanks to sitting sideways at a killer King Crimson show in San Francisco in the 1990s, I received a gift of "objective tinnitus" in my right ear that I've had ever since. "Objective" means you only hear the ringing under certain circumstances like loud sounds, loud music, and/or audio in a certain frequency range. The damage was pretty bad and I've had to wear earplugs at all concerts and movie showings I've attended since then. No big deal…I got used to it after a few years. The part that was most upsetting had to do with my playing the piano (which I've been doing about 50 years now and enjoy quite a bit). The O-T (objective tinnitus, that is) really put a damper on that (oh dear another music pun). Lucky in NYC I found a really good piano tuner who voiced my piano so that *I didn't hear that frequency*—amazing or what? It's about an octave and a half of my hearing range that's affected, and he managed to reduce the harmonic overtones for that range in most of the affected notes; that really helped me.
T and I had another run-in when I got SSHL (Sudden sensorineural hearing loss) about five years ago, I think in the same (right) ear. Luckily, I did my research fast, found a great NYC doctor, and he gave me a decent Prednisone script (I think 60mg/day for 10 or 15 days). It completely got rid of the SSHL. Believe me, I would go see that guy again for anything hearing-related—in a heartbeat—but he doesn't take my ins and charges about $800 USD just to walk in the door.
Now I'll get up to speed on T's latest visit, as of a few months ago. No specific incident this time, just T getting a lot worse during this last winter, a number of perhaps significant lifestyle changes, and then suddenly a couple months ago I began to get T full blast, both ears, a lot of variation, and a bunch of other really nasty kind of neurological symptoms that I'll described in minute.
I've been seeing an ENT who has tentatively diagnosed me as having AIED (Autoimmune Inner Ear Disease). AIED has T and SSHL as part of its symptom set, as well as some other things. Here's a "short list" of some of the (usual) symptoms of AIED:
Progressive hearing loss in both ears
Typically will begin in one ear and gradually affect the other
Hearing loss may begin suddenly
Tinnitus (ringing or buzzing in ears)
Decrease in word recognition capability
Loss of balance (vestibular symptoms)
Degree of balance loss can change throughout the course of the disease
And by the way, before I forget, if you ever want to learn a ton about AIED, here is an amazing lecture by Dr. Jennifer Derebery, M.D of The House Clinic in Los Angeles:
I really cannot recommend this YT video enough. Even if you don't have AIED, she is so intelligent and compassionate…just listening to hear share her knowledge and answer questions from other doctors for about an hour was incredibly enlightening. It's all about the ears, and she really cares.
As far as my (current, extreme) T goes, it's changing all the time for me. Shifting back and forth from ear to ear, sometimes louder, sometimes softer, gets much louder when I talk too much (and lingers, really loud, for hours afterward)—but also, a lot of times I think it's "just" somatic tinnitus, since by adjusting either jaw I can immediately change/reduce/increase the T in that ear. What's up with that?
So, oh right, the other symptoms. Nasty stuff, but potentially important. For about six months I've had weird vestibular reactions to turning my head, bending over, stuff like that—impact to motion and perhaps blood supply to the cranium and lymph nodes, maybe the thyroid. I get dizzy, and I can't think quite as well. Not fun. (But it doesn't seem balance-related; I've never fallen over.) ALSO…I've had this really weird "fullness/inflammatory/swollen" sensation all around the back of my head between my ears, directly above my neck for the same amount of time (last four months). It's sort of like congestion of a head cold migrated and parked itself between my ears and just stayed there. Finally, hearing impairment. When the condition is really bad, I have a 40dB drop in both ears. Screeching subway brakes don't even faze me because they're not that audible. When the condition is moderate, however, everything sounds at the wrong volume, and low-frequency noises even from blocks away feel like a q-tip pushing on my eardrum. Just. So. Weird. Because of this last part, I can't play the piano at all anymore (even with earplugs). Even single notes are like a big, bad storm cloud pushing up again my ears, all sonic nuance stripped and MIA.
Get on Prednisone, right? Well, it does get rid of about half the symptoms. But it's no longer effective for the T, which is getting worse every day.
I've been on three courses of Prednisone so far these last two months, all of them arguably "lame." From what I understand the protocol for AIED is supposed to be 60mg/day for 30 days right away. But no one will listen to me on this. I had one doc give me a 5-day, 60mg/day; then another a 5-five 10mg/day; now I'm on a 10-day 30/mg a day. There's a two-fold problem here, according to AIED experts: (1) short-term bursts of steroids usually are insufficient (except as an aid in diagnosis) and may result in relapse (running out of time here, please someone hurry up and help me with this), and (2) withholding treatment for longer than three months may result in permanent hearing loss and the need for cochlear implant installation (um, yeah, that's exactly what's happening—will someone please wake up and do what's right before I go deaf?).
Ah, what else: my eating changed a lot over the winter. I gained weight from eating a lot of protein and oils and have been on way too much sugar and salt. I stopped exercising. I've been under a lot of stress. The good part of my diet is that I eat a ton of vegetables and just the right amount of roughage, so GI-wise I have been really healthly.
OK, tests…I had an Electrocochleography (ECOG), and they said it's negative - that supposedly rules out hydrops and Ménière's disease, and according to my (STBX) ENT, rules out AIED as well. (Um…what? But you thought that was what it was.) I get an MRI tomorrow.
I'm still looking for a rheumatologist to investigate the auto-immune deficiency angle, and I'm trying out a new ENT in a few weeks. Meanwhile, I'm gonna try to scrounge up funds somehow (yet another CC?) so I can see that really good doc in NYC who knows all about SSHL, AIED, and all these weird things.
Thoughts?
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