- 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 research 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.
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.
So I did what any girl would do in my situation. I came home and Googled my symptoms and tried to diagnose myself.
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.
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.
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 thinkingabout 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 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.
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.
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.
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.
So far there are no reports of medications that give a significant improvement of 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.
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.
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.
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: A year after writing this post, I suspect this condition may not be as rare as people think. I get around 30 hits a day on this post. Also, I am now in a period of remission again. My thumping has stopped and all pain and ear fullness has stopped as well. The only thing I have done differently is moved to a new home, and because my nightstand is on the other side of my bed now, I no longer sleep on my right side. Whether that is the reason for my remission or not, I don’t know.
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.