Tonic Tensor Tympani Syndrome – My Story

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TTTS

 

 

Tonic Tensor Tympani Syndrome TTTS

TTTS

 

  • Does your inner ear make a “thump” sound after you speak or hear loud or high pitched sounds – or perhaps really deep, low pitched sounds?

  • Do your ears feel achy on the inside?

  • Do you feel fluttering sensations or spasms in your ear (myoclonus)?

  • Do you have sharp pains in your ear?

  • Do you have an aversion or any type of negative response to loud noises?

  • Does your neck,  face,  or inner or outer ear area frequently feel “sore”?

  • Do you have a sense of fullness/plugged up sensation in your ears?

  • Do your inner ears feel “tight”?

  • How about burning or tingling in the facial, ear or neck area?

  • Do you feel a vibrating sensation in your ears?

  • Do your ears thump or pop after you burp, yawn, or swallow?

If you answered yes to a few or more of these questions,   there is a chance you have Tonic Tensor Tympani Syndrome (TTTS).   

TTTS is a somewhat rare inner ear condition, with some statistics saying that it occurs in only 1 out of every 100,000 people.

The above is a  list of the most reported symptoms I have come across in all my Tonic Tensor Tympani Syndromeresearch of TTTS,  not only from professionals,  but also from people who have been diagnosed with this disorder or who have diagnosed themselves with this disorder after having not received a diagnosis from their physician.

A lot of us who go to our doctors with a few or more of these symptoms are not given very specific answers as to what the problem could be,  and often leave more confused than we were to begin with.  It is through our own research that we conclude that we very well could have TTTS.

I am one of those people.

Tonic Tensor Tympani Syndrome

The single “thump” of TTTS after speaking or in reaction to certain loud noises is one of the most common symptoms of this disorder in patients who believe they have it, and it is my most pronounced symptom.  

From what I can find,  it is not an “official” symptom of TTTS – fluttering and spasm type sensations seem to be more part of the actual textbook diagnosis but I spoke with Myriam Westcott who is an audiologist with experience working with TTTS patients, and she informed me that patients tend to present with their own unique clusters of symptoms and the thumping I have does fit the criteria for a TTTS diagnosis.

There is not solid proof as to what exactly the cause of TTTS is,  or what the most effective treatment is.   I am fairly certain I have TTTS,   especially after speaking with Ms. Westcott,   and all I can tell you for sure about it,  is that it is EXTREMELY frustrating to live with and it can be a challenge to find and talk to other people who also live with this condition.

That is why I decided to write this post….not so much to give any answers,  because I sure as heck don’t have them,  but to share my story and what I have learned about TTTS through my years of reading and learning.    I am hoping this will encourage others to comment and share their story and symptoms in the hope of putting some pieces of this puzzle together and getting some definitive answers somewhere down the line.

Those us of with TTTS have some bad days…days where it really gets to us….and especially on those days, it would be nice to know that we aren’t alone and that progress is being made towards finding these answers.    Right now we don’t have really have much of that hope.    At least I don’t.

When it comes to TTTS,  I don’t really have much of anything except mental fatigue,  frustration,  discomfort,  and annoyance with my ears.

Tonic Tensor Tympani Syndrome

My Story

My Tonic Tensor Tympani Syndrome story begins about 6 or 7 years ago.

I was a 36-year-old mom of three, with no history of any ear issues at all except for the time I had Shingles in my ear about 15 years ago.   One day I just happened to notice that my ear would “hiccup”,   or make a thumping type noise after I spoke,  put away silverware,  or when I was around any type of high-pitched noises.

At first,  it didn’t bother me.  I figured it was some kind of cold symptom and that it would go away.   But it didn’t go away.  And it started to get really annoying.   I had no other symptoms to go with the ear hiccupping or “thumping”,    but that thumping alone happened almost every time I finished speaking,  and it had my nerves extremely on edge.  We all know how annoying regular hiccups can be.  Imagine having that exact same sensation in your inner ear every time you finish a word or sentence or hear a high pitched noise.

I made an appointment with the ENT after it didn’t go away within a few months, and I was so glad to know that I was finally going to be getting some answers.  But it was a disaster.  I got to the ENT’s office,  explained my symptoms,  he did two simple tests on me,  then told me my ears were completely normal and handed me my flow sheet to leave.   I just sat there and cried while he looked at me like I was a basket case.

I kind of was a basket case though….I’d had enough of this.

I looked at him and said  “What am I supposed to do about this?”   He shrugged his shoulders and said it was just “one of those things” and motioned me toward the door as if he didn’t understand why I wasn’t more glad that there was nothing wrong with me.

But I knew there WAS something wrong with me.   What was going on with my ears just was not normal.  It just wasn’t.



So I did what any girl would do in my situation.  I came home and Googled my symptoms and tried to diagnose myself.

I Googled “ears and thumping” and found there weren’t a whole lot of solid results for my situation.   It was mostly just a bunch of articles about heartbeat sounds in people’s ears.   But I knew that wasn’t my issue.   I knew it was not my heartbeat I was hearing.    My thumping was ONLY after loud or high-pitched sounds and it was just one thump.  Not a continuous or rhythmic type of thumping.

Finally I stumbled on a message board  where somebody spoke about their similar ear symptoms and the person that responded to them threw out the abbreviation “TTTS”   in their response.   So of course I Googled TTTS, and that gave me a lot of information about Twin to Twin Transfusion Syndrome.   I tried Googling TTTS and ears and got the results I was looking for.    I clicked on those links and everything I have read about that  TTTS leads me to believe that this is what I have.   I don’t have all the symptoms I mentioned above,  but I have enough to convince me that I have it…the ear pain and fullness,  eardrum contractions related to certain sounds,   and the neck/facial pain issues.    So again,  put me in the “Undiagnosed,  but fairly certain” category.

And I haven’t stopped trying to find new information about it since.

I really have to wonder why the ENT didn’t mention TTTS to me though.    Is this not something that the average ENT would know about?    I never went back to him,  so I have no idea.  

But at any rate,  I felt better knowing that what was probably going on with me had a name.   Much like with my anxiety disorder,  once I knew what the name of this was,  it kind of put me back in control.    But what I found while doing my research into TTTS really wasn’t all that encouraging,    I have to say.    And since I still have  symptoms of TTTS to this day,   it clearly didn’t provide me with any long-term solutions.

Tonic Tensor Tympani Syndrome

Cause and Treatment

Here is a summary of what I have found on Tonic Tensor Tympani Syndrome over the years.   Don’t quote me on any of this exactly…this is just for general purposes,  and I am definitely not claiming to be a professional or expert of any kind.

I will put links to all the articles I summarized all of this information from at the end of this post.

What is the tensor tympani muscle?

The tensor tympani muscle is a tiny muscle in your ear that has the purpose of contracting when necessary in order to protect the ear from noises that are so loud or high-pitched that they could be harmful.

As I said before, there are many symptoms of TTTS,   but in my particular case,  the muscle contracts too often,  in response to sounds that aren’t dangerous.    Those contractions feel like “thumps”.     Not everybody with TTTS has that same issue and not everybody’s TTTS symptoms are in direct response to noise.    In addition to the thumping which is a fairly consistent symptom I am living with,  I also have the fullness and fluttering from time to time that I can’t pinpoint to one particular cause.

 

 

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Is TTTS caused by anxiety?

Some doctors say it could be.  

They say that TTTS is an involuntary response,   a sort of “startle reflex” of our tensor tympani muscle which again,  if I understand correctly,  is contracting in order to protect itself.      They say that due to us being stressed out and in an overly sensitized state,  we could be subconsciously feeling a need to protect our inner ear,  so,  when we hear the triggering noises, the eardrum contracts in a way that is normally reserved for louder sounds.

 

It is a psychosomatic syndrome caused by increased psychic tension due to mental stress.        –  Ingmar Klochoff,  MD

 

This does make sense to me because I had lived with anxiety my entire life,  and I know that the subconscious mind/conscious mind/brain connection is very strong.   And I know that my TTTS symptoms are always worse at the end of the day when I am stressed out.

But it was so frustrating to think that my anxiety had found a way to creep back into my life.    At this point in my life I had lived with about 95 different symptoms of anxiety and I had managed to pretty much control every one.   But now it had moved into my inner ear?   Unbelievable.

I will say that my anxiety wasn’t any worse or different around the time my TTTS symptoms first started than it was at any other time in my life though.   But,  anxiety is a funny thing.   Our subconscious tends to look for ways to give those of us with anxiety disorders something to feed our worry compulsion,  and it would not surprise me at all to find out someday that it conjured this whole ear thing up just to keep the cycle going.

But honestly,  I just don’t think that is what my TTTS is all about.   This feels like a physical problem to me.  Every day I say that though and then the next day I change my mind and I am convinced its anxiety.  So I’m no help there.

TMJ or Upper Spinal Problems

It is also theorized that TTTS could be related to TMJ or some other jaw dysfunction, as well as possible upper cervical spine problems.   I also have TMJ,   a pretty good case of it.  My jaw is always sore and gets even more sore and fatigued after I talk or lot or after sleeping on my side or working out.    I frequently hold my jaw clenched  and the muscles in my face and neck are usually held tensely.    I don’t even realize I am doing it.   It’s just my natural way of holding my muscles – but I am always trying to improve that.

There is a great article at Hearinglosshelp.com,  that states that TTTS could potentially be caused by pressure being put on nerves that affect the middle ear due to the spine being out of alignment.   The idea of pressure being put on nerves being a contributing factor to TTTS is interesting to me, especially because of the fact that after I sleep on my side and lay on my ear area all night,  my thumping is so much worse.

It also wouldn’t surprise me if I have upper cervical problems because I sleep in a somewhat head – elevated position and I sit at a desk and type a lot,  both of which increase my ear thumping when I do them excessively.   But I didn’t do either of those things when my TTTS first erupted.

My thumping and sensation of inner ear fullness often do seem to get worse with the worsening of my TMJ symptoms,  which include face and jaw pain and clicking of my jaw joints.    So again, I wouldn’t be surprised at all to find that the TTTS is related to it.  But again, all those years ago, when my TTTS first started,  I really didn’t have the TMJ symptoms that I do now.     So, I don’t know.

Hyperacusis,  Misophonia,  or Tinnitus

Hyperacusis is the condition of hearing noises abnormally loudly.

Tinnitus is when you hear a ringing or other sound in the ear,  which occurs when no external noise exists.

Misophonia is when you have a strong aversion to certain sounds.

It is said that any of these conditions can can trigger increased activity in the tensor tympani muscle, and I think I understand it to be because of the psychological reaction we have to the ringing,  or the increased noise level,  or just overall dislike for sound.  We react negatively to all of that,  so it gets the tympani muscle in an “agitated state”.

It is said that some people with misophonia will have “thumping” in their ear just by thinking about a noise they don’t like which gives credence to the idea that TTTS is a psychological issue.

I don’t have tinnitus, hyperacusis, or misophonia so those aren’t what has contributed to my TTTS.  I wish I did have them in a way because then this would all make a lot more sense.

Acoustic Shock

Acoustic Shock is a condition that can occur after being exposed to really loud sounds or after prolonged exposure to certain sounds that aren’t necessarily horribly loud.     Apparently the tensor tympani muscle has a severe reaction to the loud or prolonged sounds,  thus symptoms of Acoustic Shock Disorder can develop as well as symptoms of TTTS.   Although it seems to me as though the Acoustic Shock Disorder IS the TTTS, but I am not the expert so wouldn’t want to try to make sense of that.

I had no history of acoustic shock though so that definitely is not the issue for me,  although…..as I sit here typing this…I wonder:  I am kind of a loud, high-pitched talker and I have loud high-pitched kids.  Could this TTTS of mine actually be caused by Acoustic Shock from prolonged exposure to all this talking?  I don’t know.   It seems kind of far-fetched, but I have to wonder?   It is interesting …I am definitely going to look into this.  See that is why I am glad I write posts like this.  Even when I don’t have the answers,  writing can help point me new directions.

But,  good grief,  if chronic talking is the problem – I am screwed. My kids are not going to be quiet for longer than 20 minutes just so “mom’s ears can rest.”

I have tried…not happening.

Maybe I will have to look into ear plugs.

So those are some of the theories  I found that relate to what causes TTTS.      I guess I have all of them to some degree.   So even though I can’t pinpoint exactly what the cause of my TTTS is,  I know that it probably wouldn’t be too shocking to any TTTS professional that I have it.

Treatments

Not Caring

Yes,  this is an actual treatment consideration for Tonic Tensor Tympani Syndrome.   And it makes sense to me.  The theory is that if you stop reacting to the thumping ….basically just quit caring about it and acting like it upsets you,  your brain will pick up on the idea that you are relaxed and okay and it will stop feeling the need to contract to protect you.

You see,  if anxiety  causes your TTTS thumping,  then the increased anxiety you feel because of the TTTS then exacerbates and prolongs the thumping.   It’s just like any other anxiety symptom.  Our reaction to the anxiety symptom creates a cycle of anxiety,  react,  more anxiety,  stronger reaction, etc.

Supposedly if we try to stop our  negative emotional reaction to the thumping,  as well as reduce the overall stress in our lives, we can break that cycle and get back to where we used to be with non-thumping ears.  This makes perfect sense to me.   However, I have tried this and it has not worked for me – yet.   I don’t know how to trick myself into thinking I don’t care.  I will have to keep trying….or not trying…maybe trying too hard to not care is the problem.

Botox

As most of you know,  Botox paralyzes muscles and in some patients,  it has been injected into the wall of the Eustachian Tube,  which is a tube in the inner ear,  and people have found relief from their tympani muscle spasms (thumping.)

I’m going to go with no on this one.

Maybe some day my ears will drive me crazy enough to want to try this,  but at this point,  I’m not thinking so.   I am pretty sure my ears could be thumping like a marching band at the Macy’s Christmas Parade and I still wouldn’t try it…..but you never know.    If any of you have tried this,  please share your results in the comments below and fill me in on the process.

 

Surgery

There is a surgery that involves actually cutting the tensor tympani muscle so that it no longer has the ability to contract.  And people have had success with it.

Again…..I’m gonna go with no.   I am afraid of surgery,  anesthesia,  pain,  dying,  and anybody cutting muscles in my ear.

I don’t think I could ever do this.    In all seriousness,   I would be much too concerned about what could go wrong and I just think I would have to live with the thumping before I underwent this procedure.   I would definitely educate myself about it before I made a final decision…if things ever got to that point….but as of right now,  it’s not even on my list of considerations.

Again though….if you have tried this,  I would love to hear your experience with it.

 

Relaxation and Anxiety Reduction

This one makes sense to me because obviously if anxiety is contributing to your Tonic Tensor Tympani Syndrome….then lowering your anxiety would make it better.   Again..I’m not sure I believe anxiety is entirely to blame for this ear disorder,  but I am not going to rule it out either.

But this one I have always tried to implement,  of course.   Being an anxiety blogger,  relaxation and anxiety reduction is a part of my day-to-day life.

I really very rarely feel intense anxiety anymore.   With 5 kids I am under chronic stress though.   All day long chronic stress –   and at the end of the day my TTTS is ALWAYS worse.   Is that due to me holding my muscles tighter or is it the psychological stress?

I don’t know.

But I could definitely stand to work in some more relaxation time.    I am going to make a point to do that.   I have a hot tub that I rarely get into but maybe I will blow the dust off of the cover of that thing and start using it,  as well as start using heating pads on my muscles – especially on my head area – and doing more relaxation exercises.

I will also try to put more of a focus on keeping all those muscles relaxed,  especially those around my ear,   as well as relaxing my mind,   and see if that helps.

Acupuncture

I have used acupuncture for nausea, infertility and stress reduction and I am a firm believer in its powers.   I haven’t tried it for my TTTS because it runs pretty expensive where I live and I cannot afford it but I think I will educate myself about this a bit and see if I can find some more articles about TTTS and acupuncture and if like what I read, maybe I will try to add some self-acupressure into my daily routine.

It can’t hurt to try.

 

Medication

So far there are no reports of medications  that give a significant improvement ofTonic Tensor Tympani Syndrome TTTS symptoms.   Muscle relaxers have been prescribed for some patients,  but from what I understand,  it takes quite a bit of irritation to get the tensor tympani muscle as agitated as those of us with TTTS’ are,  and a medication that affects the muscles of the whole body as opposed to one that directly targets the tensor tympani,   just doesn’t seem to be very effective.

I know a few people who have been prescribed muscle relaxers for their TTTS and neither of them had much success.

 

Chiropractic Care

If TTTS really is caused by a cervical spine problem, then it makes sense that a chiropractor might be able to provide some answers and relief.   I have not tried this route myself due to the cost issue,  plus I am a little nervous about seeing a chiropractor after hearing some stores that didn’t turn out so well.    I would like to hear more about what they do and why they do it.

 

Noise Exposure

There are some that believe that you can desensitize the tensor tympani muscle by exposing yourself frequently and intentionally to the types of noises that trigger your thumping.   In a sense,  it is to try to make your brain  “bored” with that type of noise so it quits reacting to it and seeing it as a “threat”.

This is another one that I fully “get” because desensitization is a huge part of anxiety recovery.    But I am around noise ALL day long and it hasn’t gotten any better.  In fact my TTTS has gotten worse.   Maybe if I really try to not react negatively to it as I am exposing myself to it, it might help.

It’s all so frustrating.



So I think I have touched on most of what I have picked up over the years from all of the great articles I have found about TTTS.

As I mentioned before, none of it has helped me in any significant way as far as my thumping goes,  but I will say that one day about 6-7 months after my initial TTTS thumping started…I realized that my ear thumping had stopped.   I realized that I hadn’t thought about it in days….weeks.   It was just gone.    I hadn’t done anything really specific that I could think of that could have caused it to stop.   I hadn’t changed anything.    It was just gone.    And it didn’t come back.

Until it did.

About 8  months ago,  years after that first round of thumping,  it started up again and as soon as I felt that first “thump” – I knew….I just knew…that I was in for another bout of what I had gone through all those years ago.   And I was right.

This time it is worse though.    The thumping is stronger.  It is more consistent of a reaction to my voice and loud noises.   The first time it was just most of the time I spoke.  Now it is EVERY time I speak.

I have more pain in neck and jaw and more fullness in my ear with this round.   I get more irritated by it and cranky and it is just SO annoying.   By the end of the day, when my kids start chatting me up at bedtime, I have to just point to my ears and they know what that means.

That means “Don’t talk. Mommy’s ears are thumping.”  

It makes me feel terrible!

I have waited and waited to see if this would go away like it did last time but I don’t see that happening.   It did go away one day for some odd reason and I was so glad.  It was a day I was super distracted by trying to sell my house…and it just disappeared.   Then it came back the next day.

The only relief I get is if I am in a silent space or if I am in a room with a little background noise,  of if I am riding in the car.   That is it.

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There is so much more on-line now about Tonic Tensor Tympani Syndrome than there was all those years ago during my first bout with it,  and I am really relieved about that.  

However,  there still isn’t what I would call a whole lot of easy to read information.   I hope the amount of info out there just continues to grow and grow until we finally learn what the heck is going on with our ears!

If you have TTTS,  let’s swap notes and share symptoms and see if we can find some common denominators.    If it is true that only 1 in 100,000 people have this problem then it may be months before anybody even reads this post but it will be here when those people who need it are looking.   If you are one of them,  then welcome!   You are not alone.

Post Publish Note:  This condition may not be as rare as people think.  I get around 30 hits a day on this post.

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Please share your TTTS story and anything that may or may not have helped you!

And if you have some knowledge of TTTS,   please feel free to point out any corrections that you may see that I need to make to this post.   All the talk of myoclonus, hyperacusis, misophonia, tinnitus..it’s a bit confusing to me sometimes….so I take no offense to anybody who wants to point out any mistakes I may have made in putting this info together.

Thank you to Dizziness-and-Balance.com,  Hearinglosshelp.com,  Noiseandhealth.org, (which is a study),  Hyperacusisfocus.org and Dineenwestcottmoore.com.au for all the great information I found on their websites and that I tried my best to put together into some kind of post that makes sense here at The Worry Games.   Those who are living with TTTS should check out every one of these sites.   Knowledge is power – I still believe that- and all of the writers of these posts and those involved in the study at Noise and Health.org,  have way more knowledge than I have about TTTS and they put together some really great, informative pieces.    As somebody living with TTTS,  I am so thankful for all the work they do,  and a big thank you to Neil Bauman,  Ph.D for sharing his TTTS wisdom with all of us in the comments section on his wonderful post at Hearinglosshelp.com.

PS:

Please join our TTTS Support Group on Facebook.

It is a closed group for your privacy.   So far we are up to 140 members.  It’s a     great group of people and we all share very similar symptoms so please feel free to join and vent your frustrations with people who understand.  😉

 

All my best,

 

 

 

Header Image: Pixabay

AnnaLisa Scott

AnnaLisa Scott is a full time blogger living successfully with GAD and OCD, who is passionate about helping people change their relationship with anxiety. TheWorryGames.com has helped thousands of people see their anxiety disorders in a new light and manage their symptoms through self empowerment, self care, and other natural methods.

75 Comments

  1. Thank you for posting this. This is exactly what I have. I started noticing I had hearing sensitivity.. everything was loud and it hurt. Now, I have tinnitus and periodic ear fullness as well. This all happened after I got positional vertigo and so, I thought it was related. It’s not. This condition is separate. Basically after I talk or yell, I hear a thump or a click and when things seem too loud I my ear hurt and ears vibrate. Sometimes, I get fluttering. This all happened after my second child and a period of stress! I still have it!

  2. wow, after reading the above,thats my symptoms exactly , after six months, Drs were useless, so have had to research myself…..

  3. Hi! I’ve always loved your site but had not been on it for a few months, and then …stumbled on it today while trying to figure out what is going on with my ears! 2 months ago, after a very stressful week, I awoke with a “full” ear. Ignored it like most moms do 🙂 thinking I had congestion and it would go away. After about 6 weeks of this, the tinnitus started. I saw an ENT who thinks I have sudden sensorineural hearing loss (have lost a bit of hearing in the low frequencies in one ear). I was so puzzled. I’ve always thought what I am experiencing is stress-related, I wake up with a stiff jaw every morning and I do a lot of clenching a bruxing. Brain MRI was normal (thank goodness). I have the ear fullness, lots of popping with the eustachian tube, muffled hearing, slightly unsteady feeling, tight jaw, tight face. Lots of muscle tension. It would make sense that the muscle tension would reach my inner ear and affect things there as well. Thanks for this info, I’m going to look into this more!

    1. Hey Kathleen, yes, all your symptoms sound so familiar. We have about 200 people in the Facebook group now, and so many can relate to what you are going through. We don’t all have the exact same symptoms but there is a general group of symptoms that we all have 2 or 3 of. I definitely think it is somehow stress related, anxiety related and I think TMJ is thrown in the mix somehow. It really is such a frustrating thing to live with, and downright scary at times. I feel for you. A guard at night has helped me a lot, as well as trying to really focus on keeping my facial muscles relaxed throughout the day. I am a chronic clencher even in the daytime. Glad the article helped and stay in touch or please join the FB and let me know how you are doing.

  4. AnnaLisa, I have been unable to use the “reply” function on your page lately. I tried using IE and Chrome and when I click “reply” nothing happens.

    1. Thanks Caleb, I didn’t realize that issue was going on again. I took off my Discuz comment system and am sticking with the JetPack version and that seems to be taking care of the problem. Fingers crossed!

  5. Has anyone tried magnesium oxide 500mg tablets. Google them and it will explain what they are and how they can help you. I swear by these tablets. They have helped my symptoms massively xxx

  6. My son (11) has been suffering from hyperacusis for 12 months now. He woke up with it after a family holiday last year. We thought it was an ear infection from all the holiday swimming, but after many specialist investigations and scans, we came to the conclusion it was hyperacusis (and possibly TTTS). It manifests itself as an ear pain for my son, which is constantly there but gets worse with loud or certain pitched sounds. He copes with most day to day environments except for school – school is very challenging and we are struggling to find a school environment suitable – we live in Sydney, so there aren’t many small schools. I wouldn’t have said my son was particularly anxious before the hyperacusis, but we are seeing a psychologist, audiologist (he wears noise generator ear aids) and we saw an acupuncturist for about 6 weeks with no improvement. In relation to school, we are at the point of considering distant education from home (they have enrolments based on medical grounds) but this will involve me giving up my job. I’d be particularly interested to hear from people with children suffering from this infliction, and how they are coping with school.

    1. Thank you for the comment and I am so sorry for what your son is going through. This is the first I have heard about TTTS in a child. I can only imagine how it must impact all of your lives and I hope you are able to connect with others who can offer you support.

  7. Hi. I have had tinnitus for over 10 years. I was in my early 20’s when I got it 🙁
    Over the last 7 years I have had these symptoms and been diagnosed by a private ent doctor. I have good months and bad months. I have felt so low I think what is the point of living my life like this. The panic and fear consumes me completely. My kids are what I live for. I’m going through a really tough time this last wk. I just need someone to talk to who understands me as no one in my family or friends do. I’m 34 and do not want to feel this sad forever. It’s funny as I have such great friends and a amazing family yet I feel soooooooooooooooooooooo alone. Please help xxxxxxx

    1. Hi Katie, I encourage you to join our FB group via the link at the bottom of the page. Many people there who can answer any questions you have and offer support. I am sorry for the rough time you are having.

    2. Katie, I totally understand. It can overwhelm me at times and is hard to not be consumed by it. I have had the worst of days. For me, aside from folks online I know not one single person who has ever had these awful thump/spasms in the ear(s). I feel frightened at my own body at times. When it is not happening the anticipation and never knowing how long it will last gets me down bad. I have tried so many things and while at times I think they might be helping it comes back with a vengeance. My advice would be to find the right otologist/neurotologist and consider getting the tensor tympani and stapedius sectioned. I myself am going down this road and while it sounds scary, it really is quiet simple, and surgeons cut these muscles for different ear related surgeries all the time. Yes there are risks but everything in life has risks including just driving a car. I can’t imagine, nor do I want to, living my life like this… Best wishes and hang in there…

  8. No it’s not load at all. I think it has something to do with the pressure and my Eustachian tubes not sure. I have not been bothered by TTTS until I stated using the cpap.

    1. Hi Robert, I am sorry for the delay in getting you into the group. I have had a busy couple of days, but you are in now and
      I look forward to chatting with you more. Thanks for the info about the CPAP, so interesting.

  9. Wow Annalisa what a great site, I have been looking threw the web for days. TTTS is what I finally came across that sounded the miost like what I have been experiencing. I have been dealing with tinnitus for almost two years and have been able to some what live with it. A few weeks ago I noticed my ears started feeling full and aching, then the fluttering started. This was annoying at first but then started becoming terrifying. I mean my left ear rings like a church bell then my right ear starts fluttering and feeling like I have an ear infection. Not sure if it’s related but I started using a Cpap machine a couple months ago, before that it was only the ringing in my left ear. Since the cpap the fluttering stated. I also seem to have mind hypercusis it comes and goes but is worse when the ttts is acting up. Thanks for putting so much info into one site. I will join the FB as well

  10. Caleb
    Thanks for sharing your story, and, believe me, nothing you mentioned about attempts to stifle the thumping sounds the least bit weird…when I don’t have immediate success with white noise (assuming you have seen my posts here) I just experiment with jaw movements or just about anything I can think of that just might be the “holy grail”…I hope to stumble onto something that works.

    I would be very interested to hear how your surgery goes…please keep me/us posted!

  11. AnnaLisa, I sure will share my results. I joined the fb as Jack B. I’m not really a social media person but if any of my experiences help anyone I would be so very happy as this condition in quite terrible. As for the type of thumps, most often it happens in bursts, like 2-4 thumps/flutter a second. It is random as to where it can stop then do it again over and over. Sometimes it tapers off with a single thump for a while before stopping.

  12. Annalisa, I am sad to hear this is affecting you as well as others on this post. I have had this once or twice over the last 3 years and now it has become a daily/weekly affliction for the last few months. For me it is never associated with an external noise but instead can just happen on it’s own but is definitely brought on by a hiccup, burp or yawn. Sometimes it stops after a few seconds, minutes or has occurred for hours at a time, even a full day on and off. It is hard to determine the cause but after living with this day after day this is my theory. I think long term stress eventually causes muscle tension in the back, neck and jaw and ultimately irritates the tensor tympani nerve. Also I feel like inflammation of the estuation tube is contributory.

    I have tried many things, and am not going to say the things that have not helped me as they may help others and I don’t want to discourage anyone. However, I have found taking Magnesium Glycinate (400mg-1000mg a day) has helped. I have also found that taking Flonase and azelastine nose spray in the daytime and Sudafed at night helps reduce occurrences. Also on my worst of nights I have taken 0.5mg clonazepam and this will allow me to sleep with the thumping most often stopped when I wake up. I was afraid to start the medicine as I thought I would be addicted but taking it a few times a week if needed has never made me feel like I needed it. What it does do is give me rest after about an hour. It also is very assuring that I have it just in case I need it. At times I have felt despair as this is so terrible and distressing to me. I am having my tensor tympani and stapedius cut in my left ear in a few weeks as I cannot imagine living like this into the future. I am taking a leap of faith and feel like I must try it. I have been to a few Neurotologist/Otologists and these muscles are often cut for other ear issues and should not affect my hearing.

    Lastly, I have a few interesting ways to suppress the thumps once they start. It is hard to describe but I will try my best. If I hiccup and the thumping starts if I make an VERY exaggerated smile trying to flare my cheeks very far up as to show my upper teeth. At the same time I lower my lower jaw and just hold it for 10 seconds. It makes my face kind of sore but works a lot of the time to make it go away. Sometimes I can feel maybe like my sinus cavity moves or releases or something strange. Also I used to get lots of thumps after yawning but have found that while yawning if I exaggerate my yawn and open my mouth very wide and flare my upper lip to show my teeth it helps too. I know it sounds silly and I probably look ridiculous but I don’t care as I just want the thumps to stop. Both of these techniques make my face sore and don’t think they are that great for my jaw but it is getting me by until I can have surgery.

    This is really a terrible affliction and I have felt such despair at times. Please try the upper mouth exercises as they have really helped me day to day. I don’t think they are stopping the root cause however they stop the thumping that likely would have continued for hours or even a day at a time. Don’t give up and don’t be afraid of clonazepam. It is like my rescue medication. I try and not take it back to back nights and only a few times a week only when the thumping has not stopped by bedtime.

    1. Hi Caleb I am sorry for all you have been through. Do consider joining the FB group if you have not already and if not, will you stop back here and let me know how your surgery went? Best of luck to you and I will try the exercises you mention. Is your thumping more of a fluttery type sensation that is quite random?

  13. Yes, it does…position doesn’t seem to play a part in the triggering. What is really interesting is that, for some reason, occasionally the application of white noise doesn’t work, or at least doesn’t work right away. I can usually tell when it’s going to be a “long one”..often, it’s when I have just gone to bed and drifted off, only to awake with the fluttering.

    So, I usually get up after trying unsuccessfully to stop it with the noise, and head for my computer to search the web. I have gotten most of my information over those 1-1 1/2 hour marathons, searching for others to connect with for answers. The fluttering always resolves on its own after an hour or two, with or without periodic applications of white noise via my iPod.

    Two things I have noticed over the years: one, most of the posts I see any given night average about 5-8 years old….where are all the people who are struggling tonight? Last week? A month ago? Secondly, as I mentioned, it is only very recently that there was ANYthing about this particular syndrome (as opposed to plenty of people with ringing in the ears (tinnitus), which I am also very thankful…knock on wood…I don’t have! I knew someone who dealt with “24/7” ringing in the ears..some people commit suicide as a result of it).

    Now, in the last 6-8 months or so, I have no trouble connecting with people with THIS specific problem…where have these people been? I suppose that part will remain a mystery…I am just glad to have found that I’m not alone. In fact, I have a friend on FB, a British woman living in France, who, until more recently, was the only person I had found IN THE WORLD who had the same symptoms, the same sleep trigger, etc. After finishing with this I will send her a note to check out your site. Thanks again, and keep in touch.

    1. I have noticed that as well about how all the chat room and forum posts seem to be several years old! Isn’t that strange? Some of them I have stumbled on in Google search are my old forum posts from years ago when I went through my first round with this.
      I’m so glad you connected with me and with the group and I hope that at some point we are all going to celebrate having some answers. In the meantime, its nice to have the support of people who can relate even if its not exactly the same.

  14. Hi AnnaLisa…I expected the comment field to open below your recent reply, but anyway, hope this comment aligns with previous correspondence…anyway…..
    Yes, pink noise is a variant of white noise…different octave structure. It s used in audio tech to test equipment, etc. It would also be effective for use in the context we are discussing.
    Also, as I mentioned, my trigger is definitely sleep, and not TV sound or things like that. One thing I forgot to mention, though…laughter often triggers it! I (as a non-doctor/scientist) assume it has something to do with pressure built up by the force or pressure created during laughter, but who knows? There are discussions I’ve seen regarding this syndrome having its source in the brain, rather than being locally “produced” in the inner ear.
    Here’s hoping someone somewhere will discover an herbal supplement or “safe” drug that will go to the source and be able to zap this thing for good! In the meantime, keep up the good work…I’m glad I searched a bit longer and found your site.

    1. Yes I realized as soon as you said that about sleeping that you had mentioned that before. It does make sense to me that this could come from the brain or, perhaps somehow subconsciously I could be triggering by my tension level or because of some way I am “anticipating” noise. I know that when I am very engrossed in something or otherwise distracted or occupied, I have no issues at all with it. Is it because it is not happening, or because I am so busy I don’t notice it happening.

      With yours though, since yours is not noise related, and sleep related, that really wouldn’t make sense. So it makes me wonder if we have the same cause. So many unanswered questions at this point and I suppose until we get more specifics, we shall all be lumped under a TTTS diagnosis.

      Does your ear flutter even when you sleep sitting up?

      1. Sorry for the “long pause”….yes, I can be napping in the car before work…I set the alarm on my phone..and when I awaken, it’s white noise time! I have gotten so much control over this, that I am always thankful it isn’t worse…only seldom does the white noise not work, at least right away…and I am in for an hour or so of thumping/spasms.

        1. Hey Rick no problem, thanks for getting back to us. Glad to hear the white noise works for you. I still have to try that.

  15. Hello
    I have been searching online for years for any sign of anyone who has something similar to what you describe, and only in the last couple of years have people started coming out of the woodwork..I would never have any trouble finding posts on tinnitus, but the closest I was ever able to get for years was the “heartbeat in the ears” answer, which we all know is NOT what we have here.

    My first experience with myoclonus (I only learned that it had a name about a year or so ago) was back in the mid-to late 1980’s…a long while ago! I remember that evening, wondering what was going on, and, at one point was washing my hands in the bathroom, and the spasms seemed to stop. Of course I had no idea that nearly 40 years later I would still be dealing with this, but at the time I thought “well, that’s curious..I wonder what this was all about..but the hand washing seems to have stopped it”. I figured it was something nerve-related, and the cold water on my hands somehow negated the spasms.

    So, needless to say, it continued to happen…the only way it differs from your description is how and when it happens..I know the trigger: If I dose off, even for a minute, say, during the day, it is a 99% certainty the spasms will begin, and I have nights when I will wake up hourly, with the spasms. I can say that, for the most part, I am totally free of the symptoms during the day (unless, of course, I take a short nap)….for that, I am very thankful.

    The most important part of this story is how I gradually discovered what the connection to the initial hand washing was…it was not nerve connection, temperature of water, etc….it was the SOUND. So, over a period of time I discovered that the use of “white noise” cured the spasms 90% of the time within 30 seconds…and they would not come back (until I next slept or napped). If you are not familiar with white noise, it is the rushing sound you hear between stations on FM radio..essentially the sound of no radio station on a particular frequency…there is a ton of science around the source of white noise, but suffice to say it has been my buddy for all these years, and works most of the time within a few seconds. (You can find lots of sources on Youtube, but I have found one 1-hour post that especially works for me…if the sound isn’t intense or loud enough, it isn’t as effective…for me.

    I would be more than happy to share more details of my specific story with you or anyone who comes here searching for help with this rare and weird syndrome.

    1. Thanks Rick that is so interesting. I have heard some good things about white noise and also something called “pink noise” I believe? I am going to do some research on it and write a little bit about it for this post but I am glad you shared your story a bit just so its at least mentioned here on this page. I find being outside helps my thumping as well. Its very comforting to my ear to be outside or in the car. Those are my happy places. Are you like me int hat the TV never sets yours off? I could have the TV as loud as can be and it never sets off my thumping. Strange, isn’t it?

  16. Ive been reserching tmj and tonic t.s and I came across DTR therapy I think its called on you tube, I young lad got rid of tts by fixing his jaw and lineing it up and it went away, if you have face pain or jaw pain or your jaw doesnt feel right or lines up, check it out!
    I have been looking to see if anyone does it in England and found two dentists, doctors are useless and never no whats going on becauae were all guinepigs and throw pills at us!
    Try magnesium and calcium it supose to be good for the muscles if its the jaw, for inflammation tumeric.
    I went on the flight or fight route and had every symptom going, sick, swetting, twitching, brain zapps, diarrear, restless legs, pain, then I think I grinded my teeth hard one night and my jaw is not right, I have a lump in my cheek going to gwt it checked out and my bite is off, I gave up trying to make an appointment with my doctors because no appointments left so I went to dentist and she refaired me to hospital, doctors wants me to wait till end of year see if its still there! The tts was bad at beginning of this year! I couldnt sleep it was loud and could hear it over everything, my ears react to everysound, my partner had to ralk low and I could hear aeroplanes outside and cars and the vibration off the tv, its lowered now but drives me mad, the vibrating is all the time, I get rest by plugging my ear with my finger. Keep asking myself why me, I been in pain with my jaw off and on and now this!

  17. I, too, have a highly irritating problem with my ears that has persisted for some 12 years now, and thus far have had no success finding a doctor to treat it. The last doctor I saw was uneducated and incompetent—I described a eustachian tube endoscopy and suggested it to diagnose my problem and he told me it was made-up “bullshit” and refused to offer any help (I promptly reported his conduct to human resources/management, I hope he enjoyed whatever they had in store for him). Google eustachian tube endoscopy and you can actually WATCH one.

    Anyway, you’re probably more qualified to make a diagnosis than that jackass-of-a-so-called-doctor, having lived with a problem and studied it for so long just as I have. My symptoms and the origin for them are quite different than yours, but at this point I’m suspecting some sort of tympani tensor malfunction.

    Back in 2005 I attended a loud concert. The opening act caused some intense and extremely loud high-pitched feedback, which probably started the damage to my ears. When the headliner showed up, the crowd was cheering so intensely that it caused immediate acoustic shock. For the rest of the concert, I got to hear a distorted version of the singer performing—it sounded like he was on helium. But only for me.

    Later that week, when my ears felt like they had gone back to normal, I participated in some intense aerobic exercise. Running around a field for over an hour, and by the end of it, I had full-on ETD. My ears felt extremely full, and when I spoke I could hear my own voice in my head. Very consistent with patulous eustachian tube dysfunction. These symptoms cleared up within hours, but ever since then my ears have always felt moderately full.

    My hearing is otherwise normal. Audiology tests show I haven’t lost hearing in any significant way. Some sort of pressure test was done which also turned up normal results. So on paper, my ears seem to be fine. And yet, why do I need to pop my ears constantly? Why do they always feel full, even though it doesn’t effect my hearing? Why do they make a strange squeaking noise, audible to other people if they sit next to me, after a Valsalva maneuver? The squeaking surely must be a reaction from the tympani tensor, given its location and what happens during a Valsalva. I probably attempt to pop my ears thousands of times EVERY DAY, for all these years.

    Whenever I tried to research this, what came back was always ETD. Only recently did I stumble upon TTTS. It was only after watching this video and trying to figure out what the guy was doing that I realized it was related to the tympani tensor muscle:

    https://www.youtube.com/watch?v=NhKyJqERcF8

    In the video he describes his patulous ETD, and says he fixed it by doing a daily “exercise” with his ears. He doesn’t seem to be aware of what the tympani tensor muscle is, or even that it exists, but after doing research on what he describes (voluntarily making a “rumbling” or “thunder” noise in his ears), I found out he was one of the few people who can voluntarily contract his tympani tensor muscles. Doing so daily eventually cleared his patulous ETD problems.

    So I’ve been trying to gain this ability, but it’s extremely difficult to acquire awareness of this muscle if you can’t already do it. The guy in the video claims it solved his patulous ETD, and there’s not really any reason not to believe him, there’s no reason to lie about it. So if this tympani tensor “exercise” fixes eustachian tube problems, it’s likely it could relieve TTTS as well. Obviously if TTTS is caused by a malfunctioning muscle, gaining voluntarily control of such muscle should make it stop.

    But therein lies the rub, as they say. If you can’t already voluntarily flex your tympani tensor muscle, it’s nigh impossible to gain that ability. In your research have you come across this? Have you attempted to gain TT muscle awareness or heard from anyone that has it? I think figuring out how to learn and teach others this ability would solve many cases of TTTS and some forms of ETD.

    1. Thanks for sharing your story, that is so interesting. Great video as well. I do not have that particular problem with ears popping – mine is more of a muscle contraction issue – but its worth a shot to try what this guy is offering. I too have a very difficult time isolating my muscle and doing anything with it on my own…it only seems to work in a reflexive way but definitely something I can try and see if I can learn how to do.

  18. Anybody! I’d love to hear from you. I have a thumping that has been getting slightly better but won’t go away. I hear the air conditioner, outside air conditioner compressor, dryer and to a certain extent road noise all with a very low thumping noise. It is driving me CRAZY. I’m taking some valium now to help with anxiety attacks & Insomnia. Been to 2 ENT’s & they think I’m nuts. Had a brain MRI & was all good. I don’t know what to do. I can’t live on valium. One symptom I’ve had all along is a weakness in my knees. I don’t really have a fullness in my ears but when I talk I sound pretty hollow to myself. I feel out of balance and my head doesn’t seem connected to my body. What’s wrong with me. Does anybody from Atlanta know a Dr. to see?

    1. You are definitely not nuts. At least if you are, you aren’t alone because I am right there with you as are a lot of other people. 😉 Are you on FB? If so, I encourage you to join the group. We have about 150 people now and there are others who have the same issues you describe, with the exception of the weakness in the knees, the helium head and feeling out of balance could very well be an anxiety symptoms. (I have had all of them related to my anxiety.) Hang in there! I promise you are not crazy.

  19. All my life I have been able to make “that sound” in my head but could explain it to anyone as they would always think I was crazy.

    Now I learn that I am able to flex the tensor tympani.

    The PROBLEM is this – I end up engaging in this flexing as a tic or OCD compulsive behavior and can’t stop doing it over and over until my head and/or jaw gets so worn out tired and sore. It seems that it increases in frequency and intensity especially in High anxiety times.

    Is any physical damage caused by this?

    Has anyone ever heard of this to be a tic or OCD behavior? Any information is much appreciated!!

    1. Hi Ginger, thanks for the comment. I am not sure about the OCD aspect of it. That is a good point that I hadn’t considered because I am not able to flex mine on its own. I will ask about it in my TTTS group and see if I can get some feedback for you.

  20. I started having this weird thumping noise in my ears. I thought it was related to my breathing. Not so much. There is a constant tightness under my ears, an off an on electrical ringing noise, my jaw and chin up to my temples aches and the muscles are sore. It has been constant for a couple weeks now. I have no evidence of loud noises or anything. It just started one day and won’t stop. It is driving me crazy, literally.

    1. Hi Cari, yes that sounds very typical of TTTS. So you have a history of TMJ or anxiety issues? Please do consider joining our FB group!

  21. Hi, (edit: oh dear this turned into an essay)

    You mention the potential link to TMJ issues but you don’t seem to have explored very deep into that rabbit hole (not a criticism! Just a hopefully helpful observation, thank you for the post) I’ve had these specific ear issues for a year and a half straight now, unfortunately I cant handle the sensation very well and as I run my own business from home and friends dont seem to be able to understand the link between ‘My ears are bad, I cant do anything social’ I’ve become more or less completely reclusive at this point.

    Doctors and specialists I’ve paid to see (Oral & Maxiofacial surgeon, restorative dentists & ENT) had no idea what could be causing the issues and were trying to push me down the therapy to deal with the symptoms route which didn’t sit right with me. If theres an issue I want to fix the issue, not put a bandage over the symptom. My ears were healthy, the bottom of my eustation tube was opening up correctly (they used a device where by they inserted a tube with a camera up my nose to take a look at the throat end) and that was that as far as they were concerned, they were making out I was being crazy. As the symptoms are so life impeding I decided to figure out what was wrong with me for myself and thats (eventually) led me to your post.

    As an aside, I’ve had to have grommets put in my ear drums for many years now as fluid kept being trapped in my middle ear as my eustation tube wasnt opening correctly (I think this grander issue may be caused by the same issue from your post but I’ve not dived too deep into that theory yet) This experience has led me to be extremely aware of my hearing, it’s different ‘states’ and along with meditation I’m now able to tell what muscle is tensed and where, its only in the past few days I have a name to give it (Tensor Tympani)

    Anyway, the reason I wanted to post is to share a few points I’ve discovered that may help you or anyone reading.

    1) I’ve always been able to test if they’re (the grommets) ‘working’ (unobstructed) by holding my nose and bringing air from the outside of my ear, through the grommets, down the eustachian tube and into my throat by ‘sniffing in’ for lack of a better term. When everythings clear it feels like a free flow of air, when its not I cant get any air through.

    1 b) Along the way I’ve tried an Ottovent which is a device where by you attach a balloon to a piece of plastic and put one end up a nostril and swallow. This is supposed to create enough pressure to, in normal people cause the ear drum to pop and allow the trapped fluid to travel down the eustachian tube. For myself as theres a hole in my ear drum (the grommet) the air travels straight through, a sensation similar to the one above but with the air travelling the opposite way. For my right ear it worked, for my left I needed to squeeze the balloon as hard as I could to the point of popping a few (balloons not ear drums) to get even the slightest peep of air through.

    These two facts combined with the bottom of my eustachian tube opening fine and the grommet/ear drum end looking healthy led me to believe that the blockage was in between and to me it felt ‘physical’ as in a pinch rather than a fluidy feeling. This is where the doctors had no idea what I was talking about and I now know it to be the tensor tympani muscle.

    2) Please take this one with a grain of salt as the last thing I want to do is give anyone false hope but im convinced that for at least for me, my anxiety is caused by my ear issues, not the other way around (though it for sure doesnt help) One of the hardest parts of the past year and a half has been to hold onto a sense of normality and to remember what it feels like to inhabit a healthy, non-ear issue having non anxious body. Whenever I was waiting for a grommet operation (they fall out after a year and a half or so) I would be an anxious mess, I would feel like I was underwater and I was a shell of my normal self. The second I wake up from the grommet procedure all of that is gone and I feel myself, my cheek, humour, fire in my belly and general ‘me-ness’ is back instantly. Unfortunately, after waking up from the last grommet operation I didnt get that relief and this has led me to where I am now.

    3) OK so the link between TMJ issues and this mess – I think it may be easier to set out a timeline of what I feel to be related events:

    A couple years previous – I have a wisdom tooth and a molar on the same side taken out due to decay.

    Two weeks before the grommet operation – a large filling became damaged in my back molar.

    Grommet operation – woke up and didnt feel the same relief as I usually do, doctors say to wait a while. I knew at this point something was wrong.

    One week after the grommet operation – I have the filling re-filled in and its too high. I found myself grinding it down unconsciously – this is the first time I’ve ever noticed myself grinding my teeth.

    Two weeks after the operation – I had felt brief periods of relief between the operation and now usually while I was lying down. I then remember specifically being on a bus and my perception of hearing shifting into a different state and to how it remains to this day, I cant articulate the sensation any better than this.

    Some weeks later – I have the filling filled down to fit my bite but unfortunately this doesn’t give any ear relief.

    Some weeks after that – the same filling is damaged in the exact (literally exact) same way.

    SO – Its been proven that TMJ issues can be caused by an uneven bite. For a bite to be healthy all or most (in particularly I think the back ‘stronger’ molars) of the teeth should touch at the same time when you close your jaw. This spreads the force of the bite across as great a surface area as possible. If they dont meet in a harmonious way, that is to say one touches before all of the others, this causes strain in the muscles that control the opening and closing function of the jaw as they’re working harder to compensate. You may be able to feel this added strain in action in an amplified form by having one of your top canines (the pointy teeth) meet with a tooth on your bottom jaw so those two meet before any other tooth. Then try and close the other side of your jaw while doing this, the strain you feel in your ‘cheek’ are the muscles controlling your bite function being put under a lot of stress, one of the muscles being worked is the ‘Medial pterygoid muscle’ (https://upload.wikimedia.org/wikipedia/commons/0/0e/Musculuspterygoideusmedialis.png)

    The nerve associated with this is called the ‘trigeminal nerve’

    What does the trigeminal nerve also service? Yup, the tensor tympani muscle.

    I’m convinced beyond a shadow of a doubt at this point that this is where my issues stem from. Either having that wisdom tooth and molar taken out, the molar being a key tooth in absorbing some of the stress of biting function, has led me down a path to developing a bad bite and the pretty bad TMJD that I have now OR another theory I have is that 8 years ago when my wisdom teeth started to come in, one came in the wrong way and my bite has had to shift to compensate. 8 years of this stress on my jaw has led to the TMJD I have now.

    Notes: When I look at my face in the mirror its asymmetrical, my jaw is on the wonk quite heavily towards my left. Assuming nature ideally intends faces to be symmetrical (symmetry by most is considered to be a source of beauty, symmetrical faces are often voted the most attractive in polls) If I were to move my jaw so that its symmetrical with the rest of my face and try to shut my jaw, I hit my wisdom tooth before any other tooth.

    Due to my TMJ issues I’ve also developed a weird quirk where by when I open my mouth my bottom jaw opens down and then to the right. If I were to try and shut my jaw from this position (the same position my jaw would be in were it symmetrical with my face) it again hits my wisdom tooth.

    Long story short, I believe my (and perhaps (hopefully?)) yours and some other people reading this’ issue is potentially with our teeth not meeting correctly. I have an appointment on the 7th of July (next week) to get the wisdom tooth taken out and an appointment finally on the 17th to be seen in a dental hospital after an 8 month wait where ill try and argue this case. It seems like there are quite a few potential causes for this issue though so to anyone reading this for which my theory doesn’t explain, hang in there, this situation is one of the toughest things I’ve had to deal with and you have my absolute sympathy if that means anything from the other side of a computer screen. Always listen to what doctors say but remember that you know your body better than anyone else ever could. If you feel you’re of a sound mind and able to work through relevant information without getting sucked into thinking you have every condition under the sun then research, learn and fight your case. Doctors mean well but only know (and are I suppose legally obliged to only make use of) the information they’ve been taught.

    Video where a man’s TMJD is resolved after they file down teeth and create a harmonious bite – https://www.youtube.com/watch?v=9x_iyZ28g_s

    Photo of an x-ray of my current mouth situation (note the wisdom tooth on the bottom right, this is what touches first when I close my jaw) – https://ibb.co/dBZKiQ

    1. Hi Gareth, thank you so much for sharing your story and thoughts. It was very informative.

      This post was meant to be a very general post about TTTS. I am afraid I don’t know enough about this disorder to go into great length about any one of the potential contributing factors. I absolutely believe that my TMJ is a factor in my TTTS symptoms, however I could not tell you how or why. My bite is not an issue for me. I have had braces twice and my bite couldn’t be any better. However I do have a lifelong habit of jutting my jaw forward, sleeping on my side, resting my chin in my hands, jaw clenching and all the other things that cause TMJ and I definitely believe that could affect have contributed to the development of this problem for me.

      I also have a “bad tooth” on that same “bad side” of my mouth so could that be affecting the trigeminal nerve? Sure.

      I also have a history of shingles in my ear, bells palsy on that side of my face, etc. So those could potentially play a role as well since both affected that nerve.

      My anxiety plays a role but I think it only serves to contribute to my TMJ and my hyperawareness of the problem. The truth is I really don’t know….I just have speculation about any of it and there are no real “facts” out there yet to put together a quality post as of yet.

      Thank you again for the great comment and links you shared. I do hope you consider joining our Facebook group. We ware about 120 strong now and you seem to have a lot of good thoughts on the subject that I am sure people there would love to hear.

  22. I’ve been battling what I’ll call “ear issues” for 15 years, and I believe this is one of the many issues I have as well. In particular my inner left ear “vibrates” when confronted with droning sounds, like being in a car or certain music. It’s difficult to explain but it’s as much physical as it is aural. Every time I see and ENT or audiologist, they say my ears are fine, it’s TMJ and anxiety that’s causing the sensations. But I’ve been treated for TMJ and anxiety, and the symptoms are all still there, and getting worse. I’m also a musician – or was – and it’s just so frustrating (that’s putting it mildly). Anyway, thank you for the fantastic article, I found it very relatable.

    1. Hi Christian, I am sorry for what you are going through. I can relate to how you feel. I feel strongly that mine is very related to my TMJ as well. Im trying to put a strong focus on working on relaxing my jaw and not talking so much for a while to try to “heal up” whatever is going on in there but its not helping much. Its a hard thing to stick to, to not use your voice. Stop by our group on Facebook sometime, we are over a hundred strong now. Thanks for the comment.

  23. Yes! I didn’t know there was a name for it! There are certain sounds that will cause the thump every time. One of the weirdest is a little travel spray bottle, it’s crazy. Not even loud, just an odd tone. Other times it’s constant, anywhere from a few hours to a few days. I always say it sounds like a moth is trapped in my ear drum. But I’ve found my cause, too much stress + not enough sleep + too much caffeine + not enough water. Triggers it every time. I’ve since cut back on coffee and drink more water, so the stress filled sleepless times don’t tend to set it off. Maybe for a few minutes as a reminder to take care of myself. Oh, and grinding my teeth! I tend to grind/clench my jaw even awake.

    1. Hi Aimee, I think I know the exact sound you are talking about with the spray bottle and I can see how that would set it off. It doesn’t set mine off but I can see how it would for somebody else. Stress, tension, my TMJ and lack of sleep all make mine worse as well.

  24. Hi AnnaLisa – I have just come across this diagnosis after seeing an ENT, having xrays, CT and MRI of my head and seeing an audiologist. The ENT basically had no clue and said nothing was wrong physically and sent me on my way – I cried!. Then last week I got an email from the audiologist, who had just been to a conference and spoken with an expert about my symptoms….. and hey presto! She knew what I was talking about!!!

    I have always described the sensation as a ‘thumping’ – GPs try to blow it off as my heart beat, and I have to always clarify that it is in noway related to my heartrate. For me, my ears react to any sudden loud or unexpected noise. I cant handle high pitched noises at all, and after a day or night in a loud environment, my ears will go crazy at night time in a quiet one. The thumping will start up, and then just be rolling on top on the next thump. To the point where I cant hear. it feels like the thumps wear out my cochlea and it stops reacting. In fact when its back it becomes painful, like any other muscle that is spasming.

    I get the tinnitus, the knocking, the flutters.
    I have neck pain, jaw clicking, ear pain.
    I have fullness, earblocking …….. it all really sucks
    I have a really high startle response

    The other thing is when it is mild I have semi control over it… If I can stop the world, concentrate really hard on relaxing that part of my ear, I can stop it….

    I also use background noise all the time. I sleep with white noise on in the background and that helps.
    Anyways thank you for the blog – It was good to read and I really feel like at least I have a name for it…
    Violette

    1. Hi Violette thanks for the comment. I know just how you felt after going to your ENT. I was the same way and have heard from SO many other people who did too. That is wonderful news about your audiologist. I hope it leads to good things for you. And yes, thank goodness for background noise!

  25. Good grief–how awful. I use Botox for headaches which means lots of Botox directly into my head. It really helps. It’s changed my life. Just throwing this out there as you consider your options.

  26. Hi Lisa,
    How long do your episodes last? Are the continuous or do you get a break. Also, U did not mention anything about vertigo. Do U have any vertigo issues or is it just thumping?
    Doctors can be a real joke. They hate putting thought into anything. Text book cases is all they are good at. At $150-$200/HR, I think its pathetic.

    1. I do not have vertigo myself but the longer I have my group going, the more I hear about it. My main symptoms are the thumping and the fullness sensation. Definitely worse with stress. And I know what you mean about the doctors. For me personally, not a help whatsoever.

    1. You know, I am not sure. I don’t drink so I couldn’t tell you. And I am not going to suggest you drink a half a bottle of wine to find out because the headache you get the next day may be worse than the TTTS symptoms. 😉

    2. I think it desensitizies you to the issue for sure, I have personally never noticed the symptoms during a drinking session except the first time I experienced my fluttering in an overly lound Romanian nightclub. I believe this too be the ‘Acoustic shock’ which triggered my condition.

      But you can’t just be drunk all the time! Socialising in general should take your mind of it. In crowded room of people I don’t have issues, just at home or in quite spaces… what about you?

  27. Hi just found your post after scouring the net looking for some answers. I have fluttering sensation, full feeling in ears, tinnitus and mild vertigo, have had hearing tests and MRI scan, my doctor says everything is fine and I just have to live with my ears the way they are???? Thank you for your write up, I am glad to hear there are others going through similar stuff plus it’s good to put a name to the condition. I wouldn’t say I was a paticularly anxious type but then who knows? It is difficult to ignore the fluttering and the echo of my own voice. I thought it was caused by my love of rock concerts lol and it has been worse since coming home from a ‘rock’ weekend. If anyone comes up with a solution I would love to know as it drives me mad at times, especially when I speak, maybe I should just stay quiet lol or stay in bed. The doctors arnt interested, do they even recognise it as anything? I don’t know…..

  28. Hi Lisa, I stumbled across your post after googling “ear drum vibrating”!

    I’ve had this for quite a few months, and although there is no pain, it’s really annoying. Along with it, I have facial and neck tightness and a feeling of fullness in the ear (which I’ve probably had for well over a year). But when I started having hearing loss in one ear and ringing, I decided to visit my GP. She referred me to an ENT consultant, who then organised for an MRI scan. I’ve had the scan, but am awaiting the results! I’ll let you know the outcome!

    Regards,
    Lisa

    1. Thank you Lisa! I had the vibration in my ear for a couple days and I found a YouTube video that actually helped it. I am not saying it will help you because you have had yours a lot longer but I will get the link and post it here in case you want to try.

  29. Hi Lisa,

    I have had the condition for 7 years now. Developed it during my teens after listening to music over headphones regularly. I did have a formally diagnosed anxiety problem during that time, but hard to figure what to correlate the condition with, music or anxiety?

    Usually TTTS is associated with tinnitus or hyperacusis, but I am diagnosed with neither of these conditions. Anyway, hyperacusis is not even a commonly recognised condition among doctors, so diagnoses doesn’t come easy. I do have some level of ringing in my ear every now, however I have never felt that common sounds are getting amplified.

    The sounds that have my left ear inner muscle fluttering are usually metal clinking, or sudden loud noises. This sometimes results in puffiness in the ear, and some amount of pain, which remains for sometime.

    I do have to say that I have over the years come to ignore the fluttering, or in a way come to ignore it. But recently, I have developed some other bodily problem, and that has me stressed. Somehow, due to that issue, I am actually noticing the fluttering in the ear more than ever, accompanied by pain. I can say that the condition is somewhat related to stress.

    I am not giving up just yet, and have started meditation to control the stress. Plain fluttering doesn’t bother me, but the constant pain does. Let’s hope we all find success in our struggles and spread awareness on such issues, which are usually ignored by the medical community.

    Regards,
    Rajat

    1. Thank you so much for sharing your story Rajat. That is so interesting about the headphones and that you had anxiety at the time as well. Such a common thing for those of us with this disorder. I am glad you have found a way to ignore the fluttering. That has been a newer symptom of mine that has been developing off and on over the last few months and it is pretty annoying. Lots of luck to you with your pain. Please stop back and let us know how the meditation works out for you.

  30. Been suffering from this for about four years on and off. Developed symptoms in a very stressful period and became obsessed with it. Really affected me. Right now I am going through a bit of a relapse where it is quite bad again brought on from lots of banging at a kitchen porter job. But for about a year it didn’t affect me. I think a lot of tinnitus mindfullness stuff can make a difference. Mine is definitely better when I am ok with it there. Unfortunately if i’m having a bad week it comes back just like that!

    When it is particularly bad a find listening to music with speakers with good bass levels helps. Low end frequencies seem to blanket the sounds that trigger the jumps. Also confined spaces and small rooms make it worse because the acoustics are bouncing back at you and your ears pick it up. I really relate to you having to stop talking as my mums voice has a high register that is worse than other memberrs of my family, and sometimes I can’t concentrate on what she’s saying because im off in anxiety land.

    I’ve found a tinnitus exercise online reffered to as ‘the skull thump’ helpful for releiving stress in my neck and head. Other that I take walks to releive anxiety. And if that doesn’t work I just have to deal with the annoyance. I definitely think Anxiety is a huge cause in it appearing ‘worse’, just have to try and keep positive! I have been meaning to try meditation and more regular exercise but I am not the most motivated person!

    1. Thanks for taking the time to comment Stephen. I’m sorry for everything you are going through and can definitely relate. Working to deal with the annoyance is the hardest part, I think. Some days I handle it better than others. I am going to look into that “skull thump” you are talking about. Hoping good things for us very soon. 🙂

  31. Love your blog Lisa on TTS.
    Suffer from the same rare illness for 8 years. Finally found a doctor and had the operation in both ears. Much better but not cured. Any relief is a blessing. My anxiety was off the charts. Hope to read more from you and others.

    1. You had the operation? Wow, I’m pretty scared of going that far with it. But after years and years with it, I may change my mind. Its encouraging that you have had some success with it.

  32. I have had this for years and final figured out what it is. Mine started years ago during a very stressful time in my life, but then went away. A few years ago, my eardrum ruptured, and had never healed. This has started it all over again. The ENT guy said tympanoplasty will do nothing to correct the loud tinnitus and fullness I feel in my ear. In my case the TTTS is a feeling like my ears are full or stopped up. I have often described it as tightness of muscles inside of my ears, but it seems that no one had ever heard of that. I have always noticed that if I had several alcoholic drinks, it would feel better, and I guess that was because I felt more relaxed while drinking. That could lead to a bunch of other problems though. Sometimes I put a heating pad on my ear, and that seems to help, but only while it is on there. Also, for some reason, if I am laying down, it feels better, but I guess that could be because I am more relaxed. As far as the cervical problems go, I have had a pinched nerve in my neck following a motorcycle accident I was involved in back in July 2010. I know it isn’t any thing to really worry about, except it drives me nuts. I do think it is anxiety related more than anything though. When I first had it, I was in a marriage where my wife was cheating on me, and I didn’t know it, but I kind of knew it, if that makes any sense at all. I guess I just didn’t want to know it, and that caused a lot of anxiety. I have always had insomnia, which I’m pretty sure is anxiety related. Heck, it feels good just to sit here and write about it to someone who understands the problem.

    1. What a story you’ve had Bob. I’m sorry to hear about all you went through. What caused your eardrum to rupture if you don’t mind my asking? I definitely have the fullness on a lot of days as well and sore muscles in my jaw and ear area. And you have anxiety issues as well…..that definitely seems to be a predominant risk factor for getting TTTS. Thanks for the comment and yes I definitely understand! If you are interested in joining a TTTS group on FB check back in a week or so and I will have the link posted.

  33. Hi Lisa, I also have this and I am glad to see all that you have written. I actually had the surgery for both ears. It helped in one but not the other. My story is very long so if you want when I have time I could post it.
    Take care.

    1. Hi Kate, yeah I would love to hear your story sometime. I would love it if you sent it to me and then I could make a page for it here to link to. I think a lot of people would find it helpful! I will email you to in case you don’t see this response.

  34. So glad I stumbled across this, I’ve been dealing with this (along with other ear issues but this being the most disturbing) for 3 years. Symptoms started when I was pregnant with my first child. I went through periods as well where it happened seldom. But recently it started up and seems to be getting worse, but every time I bring it up to a medical professional it is shrugged off and I’m told just to take nose spray (which does nothing). Sometimes I’m afraid it will send me to a mental institution. Not much can be found online but your blog was one that popped up. Seeing how recently this was posted somehow helped me feel less alone.

    1. Yes its only been up for a week or so, so I am glad the timing worked out for you. I wish I had written it sooner because I really think there are a lot of us out there. And no you are definitely not alone. I have had a terrible flare up the last few days where it is worse than usual so I am just a crabby mess with it right now. I started a closed Facebook group which has ZERO members at this point except for my husband and I (he doesn’t have TTTS but it wouldn’t let me start a group without at least one member…lol) but I will post a link to it for anybody who may want to consider joining and share stories and just vent to people who understand!

  35. Hi Lisa, Very few specialists do understand TTTS, however Australia has a fabulous medical professional who focuses on it. Her name is Myriam Westcott, telephone +61 3 9457 6588. All the very best x

    1. Thank you Constanze, I appreciate the comment. I actually had linked to her earlier in this post, but I am glad to be able to have her phone number to share now as well! Thanks so much!

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The Worry Games
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