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The Hyperacusis Network Message Board
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MichaelD

Registered: 09/01/11
Posts: 3
Reply with quote  #1 
Hello all, first post here and just wanted to say how glad I am to find these forums.  I have come to the point where I can no longer deal with the annoyances my condition permits.  I believe I have suffered from a form of tensor tympani syndrome for around 5 years now.  Alot of the users that have posted here with this symptom have random occurances of the muscle spasms while this is not the case with me.  What I suffer from is when I hear music at high volume or there is alot of people talking around me, I have the feeling of pressure against my eardrum.  Also the problem is most pertinent when I am lifting weights lying down.  I started seeing an ENT about 3 months ago and he put a tube in my ear which seemed to help with the crackling noises I had, but not the pressurized feeling.  I have an appointment with him next week and am really hoping I can get diagnosed with an MRI to see what the hell is wrong with me.  I've heard about the surgery to remove the tendon but I really think that is unnecessary for my condition.  Any feedback from you guys would be much appreciated.  I feel like my condition is overbearing at times and feel like I can't enjoy life while it persists.
jayjay

Registered: 08/26/08
Posts: 172
Reply with quote  #2 
I have TTS (along with H, T and ETD), but it's not the crackling or fullness that bothers me as much as the sensation that something is working its way down my eustachion tube. It's quite painful at times. Also, there's a fluttering sound and of "crashing waves" when noise levels are too high.

Regarding and MRI, I got one done but it was more trouble than help. Personally, I'm not sure that an MRI would reveal anything wrong. MRI reveals "cut-away" images of your given body part. But it might not reveal how each part is malfunctioning. However, every one of us is different and must investigate our own conditions, so I'm not saying you shouldn't do it. An MRI can be used to rule out other possible causes (tumor, etc...).


MichaelD

Registered: 09/01/11
Posts: 3
Reply with quote  #3 
Thanks for the response jay.  You and others on this board seem to have a much worse condition than I have.  I don't experience pain or the "feeling of a moth" working around inside.  Alot of people seem to have it both ears as well but I only have it in one ear. But the fullness and crackling I experience has become a huge nuisance and I want to know if something can be done about it.  Maybe magnesium or botox injection can relax my muscle but who knows.
jayjay

Registered: 08/26/08
Posts: 172
Reply with quote  #4 
No problem... I think everyone here is just trying find solutions to their individual problems, and a lot of us have similar issues. That said, a lot of us have very unique problems which makes it very hard to give suggestions for fear of giving out "bad" information. The truth is that almost everyone suffering from H (including the specialists and doctors we seek) don't know what's really wrong, but given time will come to understand certain things about our individual circumstances. Therefore, it's up to each individual to find solutions.

Let me share the cold, hard facts about finding help - it might not be out there at all. In fact, I've had to suffer for YEARS even while seeking medical help from ENTs, doctors, neurogolists, psychologists, you name it, etc... and NOTHING has been effective. Sometimes, their advice or treatment was counterproductive. But I never blamed them, I just realized that it was up to me understand what is wrong and try to cope with it as best I can. Medical experts can only treat symptoms they can relate to, but when it's beyond their practice... it becomes almost embarrassing. For example, there have been times when I've gone to see my family doctor and ENT knowing full well that he wouldn't be able to help (but I go because I don't know what else to do). During these visits it would be very awkward because we both know there's nothing either can do. I remember one time he said the didn't see anything wrong at all and another time he simply said he would subscribe pain medication. But medication has never helped me at all. Sorry, I don't mean to sound pessimistic, but the reality is that we have to be responsible for ourselves and not believe that doctors have the answers. They're only part of a bigger solution.
MichaelD

Registered: 09/01/11
Posts: 3
Reply with quote  #5 
I'd just like to give a little status update.  I've been doing alot of research lately to find more conclusive reasons behind my symptoms.  The good news is I don't believe I'm suffering from any kind of tensor tympani syndrome.  I don't get the fluttering sensation that people describe.  I feel my muscle just below my eardrum clench up when I'm doing high intensity weight lifting laying down which has led me to experiment a little bit on the muscles in the jaw to see what exactly triggers it.  Basically when i apply pressure to the pressure point just below the ear lobe, I feel the pressure magnified which causes the sensation of my ear to become full.  Also, the past month I have pain coursing thru my right jaw which I have never experienced before.  When I move my jaw side to side it helps relieve it but comes back the next day.  So it is good to finally know the heart of my issue, and I am so relieved I don't have tensor tympani syndrome, because that will never go away according to what I've read about it.  So what I'm doing in the meantime is just massaging the muscles in my neck and jaw that feel tense and continuing to take magnesium to see if my condition improves.  I can already say with just a couple days of doing these things I've noticed a slight improvement in my symptoms   Hopefully my ENT appointment next week can reaffirm my suspecions and presribe additional treatment if necessary.
malo12

Registered: 07/11/11
Posts: 34
Reply with quote  #6 
Maybe I got an intersting link for you.

Klochoff poses that TTTS is (partially) psychosomatic: http://www.tinnitus.org/home/frame/Tensor%20tympani%20syndrome_Klochoff.pdf

This is in line with Dr. Sarno's theory about psychosomatic medicine for normal muscles and tendons. Maybe psychotherapy and information may help in this case.
I think the Westcott approach (http://www.dineenandwestcott.com.au/hyperacusis.php) is similar.
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