I've been meaning to write this up forever. I am the second poster on this thread who complained about this issue.
Hi tmkain, good to see you are still around, but sorry to hear about the flare ups.
I think I have been pretty proactive about this condition. Here is my interesting ordeal with the medical specialists, in case it can provide anyone with insight.
I believe I am coming up on the third anniversary of the onset of this condition.
My first action was a local ENT who barely listened to me and then told me I have a Eustachian tube problem and then prescribed a nasal steroid called Qnasal. I took it for two months with no relief.
I then contacted an ENT specialist. He did a tympanometry test which concluded that my eustachian tubes are fine. He then shrugged his shoulders at my description of the problem and said he had no idea what to do.
I was desperate for help and contacted a highly rated orthodontist. He told me he could help me and I made the trip down to his office. He "listened" to the clicking, and claimed he heard it but I had a really hard time believing him because of the loud music being played in his office. He announced that the issue is caused by a narrow upper jaw, and informed me that I needed surgery to cut my upper jaw in half and have plates put in for 18 months to widen it. Then hopefully the noise will go away. I nearly died driving through a red light on my way home, looking at my teeth in the rear view mirror.
I next visited the Director at the Center for Oral, Facial and Head pain at the Colombia University College of Dental Medicine. She took an x-ray, and told me I have a deviated septum. She laughed at the idea that there was anything wrong with my upper jaw that I needed surgery for but she couldn't offer any diagnosis or help other than to prescribe Physical therapy for my bad posture when I told her the clicking gets better when I stand straighter (it doesn't seem to have much effect anymore).
My next stop was a very highly recommended ENT in New York City. He did a Nasal Endoscopy (camera up nose) and basically said, 'well, you have post-nasal drip'. He was quite unhelpful and unsympathetic and left me fuming at his exorbitant charges and pathetic bedside manner.
Since then I have contacted the famed Dr. Dennis Poe of the Boston Children's Hospital and I plan on going if he will accept my case.
I know this is really long but I hope it will help to rule out any ideas that readers may have to get surgery to cut their jaws in half or something crazy like that.
For other medical info that might help, I am male, 5'10" very skinny, I have hypermobility (flexible joints) and some mild TMJ. I am hypo-thyroid and have a post-nasal drip.
If any of you see any shared characteristics or symptoms, please note them, it could help to narrow down the possibilities.
I don't know if anyone out there is still looking for a solution; I definitely am because this is still driving me crazy. I've tried ignoring it but it hasn't ignored me.
After many fruitless doctors visits, I have arrived at what I believe is causing this:
I suffer from post-nasal drip, which I suspect is caused by my hypothyroidism.
I think that my nasal mucous is very thick and gathers in my nasal passages above my soft palate. When I talk, the soft palate lifts and every time it descends, it draws the thick mucous down with it. The sound I hear is the mucous being pulled and dragged and 'snapping' around my nasal passages.
At this point I hope that the current medication I am taking for hypothyroid - Levothyroxine - just isn't alleviating my symptoms and perhaps another one might. I plan on speaking to my doctor about it.
Can anyone else please confirm if you too suffer from a post-nasal drip, thick mucous and/or hypothyroidism?
It's been a couple of weeks since I checked this thread and it looks like there are more than 3 people in the world suffering from this horrible condition.
First off, I would ask that people keep this conversation on the thread if at all possible so that others can benefit from the advice. I'm sure that those on the thread and those who haven't discovered it yet will really want to know everything that can help them since the multitudes of doctors have just dismissed our discomfort. However, I guess posting an email address is helpful to ensure the recipient receives it.
Second, there is strength in numbers and it is more likely that a medical professional will take you seriously if you can show this thread. Also it is probably easier to diagnose the disorder if one can find a common denominator in a group of people.
This problem is enormously frustrating and I personally have come full circle, starting off thinking it is a result of TMJ, then being told it is Eustachian Tube Syndrome and taking steroids for months, then being told me ears are fine but my upper Jaw is too narrow and needs widening surgery. Then another specialist said that was utterly false and that I should do jaw exercises and take Physical Therapy for my posture and core.
Now I'm back to thinking it is some sort of painless disc misalignment in my jaw although I don't understand how it would have affected both sides simultaneously.
Does anyone else experience the clicking on both sides? My left side has the primary clicking and my right side much less severely.
Also, as perhaps as Rauru meant, If I tense the muscles near my ears I also have a slightly quieter "crinkling" sound.
This is really interesting because I've been doing some self evaluation recently and I can tell you with utter confidence that I have the 100% EXACT thing you have.
I discovered that the common denominator that caused the sound was that my soft palate was lifting up. K, T, S sounds, blowing out, burping, all lift the soft palate and when it releases it snaps something near the ear.
I deeply commiserate with your frustration and pain. I'm happy though, that you found this forum. The value of several people collaborating is that it may be much easier to find a solution based on comparing situations to see what common characteristic we share.
For example, many of the specialists I saw, claimed that this is a result of my (mild) tmj, or possible breakdown of the cartilage in the joint or maybe osteoarthritis. Others said it could be a swollen Eustachian tube. One specialist did a test that tmkain referenced, using a tympanometer to suck air through my ears to test my Eustachian tubes (they were fine).
So, do you have any TMJ problems? I have pretty minor ones. Do you grind or clench your teeth at night? I do a bit.
How long have you had this?
I wonder if there is any meaning behind the fact that I got it soon after starting voice lessons for singing. I couldn't continue them.
One thing that really helps me is when it's very noisy, I tend to not hear the clicking and thus not get distracted by them or pay attention. Lying on my back also helps.
Please let us know if you discover any solution! I certainly will.
Thanks for your detailed reply. I agree that keeping our conversation here is a good idea. I was supposed to receive and email when you posted a new message but that didn't happen so I only saw your post very recently.
Thanks for the list of things that helped you. I'll try to bear it in mind when this *thing* is bad. I definitely have better and worse days, although it almost always is worse in the morning and better during meals.
It is very encouraging to know hear that it disappeared one day and I fervently pray for it to remain that way.
One question I have for you is: Did it always occur by your left ear, and was it always a single click? I occasionally have it in my right ear as well and often occurs as two or three simultaneous clicks. This is when it is bad and it makes me want to crawl into a hole and not speak to anyone. Inevitably this is also when my boss will decide to have a long discussion about some project with me.
Another thing: I also hear a lot of noise when I swallow. Did you get that as well?
I actually made a recording of the noise by placing my recorder near my ear against my skin. I can make the click happen by blowing air out of my mouth; it happens right after. On the recording it is very audible; it sounds like someone 'popping' the top of a Snapple cap. The sound is nothing like that from inside my ear. From inside it sounds like a sharp snap.
Look for my next post, I am going to see if I can upload the recording to the web and then I'll post a link to it.
I am very grateful for your responses, they are like a link to future life without this and when you said: "There were times when I got so mad at it, so reluctant to talk for fear of making the click happen, and so frustrated that no one could understand what the heck I was going through that I just had to cry."- I understand exactly how you felt because I could have used the same exact words to describe how I feel quite often.
By the way, interestingly, I also have a 'forward head' Also, if think of anything else that may help please post it.
Also, after going to several doctors, and realizing that they were having a hard time hearing the noise, I actually recorded the sound by pressing my phone to my cheek and recording as I blew air out of my mouth. (clicking happens when I blow too) I then listened to the recording with the volume cranked up. It's very audible and sounds like someone clicking a Snapple cap. That's my doctors words not mine..View Thread
Thank you so much for replying. I did not have too much hope that after all these years you would reply to my post.
Im really happy for you that the clicking is mostly gone. How long did it take before it was no longer constant? I have had it for about seven months with no break although some days it is worse than others.
On bad days it feels debilitating because every sentence I say is accompanied by multiple loud clicks which are very distracting. I think though that you are correct that when I forget about it, it bothers me less.
I have been combing the Internet all this time and you are the only person to have described the exact same symptoms as me. Can you elaborate on the things that you do which helps the problem? Which climate do you live in? Have you moved since it started? Do you have/had any other illness that may have started it? TMJ for example?
Any information would be really appreciated. Perhaps here is a way I can send you a personal message to communicate about this?
Strangely enough it also started in my left ear but also occasionally pops up in my right ear as well. It gets worse the longer I talk, so a long conversation really is hard on me.