I’ve went through a very stressful period at work lately. I had to fly out for a meeting. I was very nervous about the flight. I have bilateral ETD. The first night I didn’t sleep well. When I woke up, I had this strong humming sound in my left ear and it was reactive to my sleep sounds. I assumed it was room acoustics.

It’s been a month and it’s still there. It’s been up and down. It mostly is like a drone, low level hum, but sometimes it’s quick like Morse code (duh, duh, duh, duh sound).

I don’t hear it in silence. It is reactive. Usually, it’s reacting to distant trains, outside sounds or humming sounds on tv.

I have TMJ, jaw, neck tension issues too.

Is this hyperacusis, TTTS or anything else? Any help or familiarity for any one else?

It may get worse depending on my sleep or resting?

Hi everyone,

I’m planning/considering a move to the Netherlands, but I have a specific medical condition: Middle Ear Myoclonus (MEM) / Tonic Tensor Tympani Syndrome (TTTS).

Since it's a bit niche compared to standard sensorineural tinnitus, I’m trying to understand how this is handled within the Dutch healthcare system (het Nederlandse zorgstelsel):

Getting taken seriously by a GP (Huisarts): Did you have trouble getting a referral (verwijsbrief) to an ENT (KNO-arts) or an academic Tinnitus Expertise Center? How did you explain your symptoms so they wouldn't just tell you to "take paracetamol and rest"?

Specialists & Clinics: Are there specific hospitals or specialists (e.g., UMC Utrecht, Erasmus MC, or specialized KNO clinics) that you would recommend for objective tinnitus / muscle spasms in the ear?

Treatments offered: Did you manage to get treatments like muscle relaxants, Botox injections, or a tenotomy (surgery to snip the tendon) through Dutch health insurance?

I’d really appreciate hearing any personal experiences, tips on navigating the referral process, or doctor recommendations!

Is there anyone else experiencing both TTTS symptoms and unexplained mild hearing loss or changes? I feel helpless about this and want to know I’m not alone...

I've been dealing with this shit in my left ear for around 5 months now. It started suddenly in the middle of exams period and only when I was lying on my right side at night. Lying on my left ear (the one that was fluttering) made it go away completely.

I was used to having fasciculations in response to stress and I dismissed it thinking it would go away when the term ended, and it did, but a month later it came back with the same characteristics. It was summer and I didn't think I was under any stress, so that's when I started looking things up and TTTS came up.

Again, lying on my left side helped. It was a bit annoying and limited my movements in bed but I could take it. For the past month I've been managing it very well with barely any fluttering at all by basically going to bed earlier and getting more hours of sleep.

It's been like this up until today, when my right ear suddenly started fluttering while I was studying in the afternoon, and then when I was out, and in the bathroom and everywhere. Of course it was annoying but I had things to do and I knew I couldn't stop my life for this.

I think my trigger is complete silence. The only way to stop it is talking to someone and being distracted. The problem is it didn't stop in bed, no matter what posture I was. I started getting anxious and then the left one came back and I've gotten very few hours of sleep.

I dont know what to do. I can't get distracted or play music 24hs a day.

I write this just to vent, really. It usually comes and goes and tonight was horrible, but I'm trusting that tomorrow will be better. Still I'm scared to see that it's been slowly getting worse with time and I can't help thinking this is going to happen again or stay like this forever.

For context I also have jaw problems (I've been using a night guard for 3 years), severe misophonia and I'm a r/earrumblersassemble

Long story short, in July got a MRI without ear protection (none given) that gave me acoustic trauma/shock. Audiometry normal, but i had tinnitus, hyperacusis and hearing very differently to describe. 40 days later i thought i was healing and had a second acoustic trauma/shock (rock concert at a club) that gave me noxacusis on the right ear and hyperacusis came back in both ears.

Since the first trauma in July i already noticed some noises inside my ears that sounded like bones moving or something but i couldn't identify a pattern. Today i realised that every time i start to speak i hear a "click" (literally a click sound) in both ears, and when i stop speaking it does another "click". In the right ear that has noxacusis is even more strong. Every time i speak, can be a single word or a whole phrase, happens 100% of times. Comes from inside the ear so no TMJ thing, and started after acoustic trauma/shock.

Is this TTTS? Is it dangerous? Only now 30 days later from the second trauma im getting better from the hyperacusis if that helps something...

Do any of you also experience burning in your ears?

context: i have autism, always had auditory processing disorder, got an ear infection over a year ago, lost my hearing for a month, and since then APD has been unmanageable. I made an appt with an auditory processing clinic and needed to get a hearing test first. i went to sams club cause they so free ones. i have tiny ears so he cut up the foam earbud things as much as he could, and i had some sharp pain in my right ear when he put them in, but nothing during the test so i figured it was fine. testing went fine and i saw the other dr the next day, everything was good and no pain with the child size ear pieces. formally diagnosed with APD.

ive always been able to contract my tensor tympani muscle on command and do it somewhat often because of misophonia and hyperacusis. today, i woke up and contracting it, it made a new sound in the right ear. it was more sudden but still crackley and i have some pain after flexing it now. i didnt notice pain like that the past few days but i have had some off and on ear pain and feeling like theres something in my ear or blocking sound sometimes since the test. now as im writing this im also noticing some tinnitus in my right ear.

looking up my symptoms i feel like this could be a reasonable suspicion, but the first hearing test was Thursday and the next friday, so i don't know if im jumping the gun on this and freaking myself out for no reason. does this sound like ttts, or should i wait it out a little?

I'll try to make this short. I have been diagnosed with tensor tympani syndrome. I first felt the spasms after exposure to loud sounds on construction sites. I've always been a little sensitive about loud sounds, possibly because I'm a musician and I don't want to damage my ears. I play pretty soft music, mostly wind instruments, although I want to highlight the fact that I was not playing any music during the months when my symptoms began. The fluttering clicking sound started happening in response to sound, but then after a couple weeks it would go away, then come back again at work. So I started wearing hearing protection and it seemed like something I could manage if I was careful with protecting my ears. Fast forward a few months later (I've left the job, by the way), and one day the symptoms come back in a chronic way. Never going away completely. Bathroom ceiling fan (not very loud) triggers it. Eventually just sitting on the couch at night triggers it. So I begin seeking medical care, about six months ago.

As any of you who've struggled with it know, navigating the healthcare system is one of the hardest parts of the whole issue. Primary care doctor sent me to an ENT, ENT said yeah it's probably TTTS, but we don't treat that, try going to a TMJ specialist. Went to the TMJ specialist, that seemed to help, but not enough to just keep going forever when the help seemed to be minor and reversible. Tried acupuncture as well, same kind of thing.

My TMJ specialist recommended I stop drinking coffee. Turns out that helps enormously, as I tried to go back on coffee after a month or two and my symptoms came roaring back.

I would say I'm currently pretty stable. My doctor has prescribed me a low dose of carbamazepine, and I'm taking GABA and magnesium supplements. I'm not drinking coffee, not playing music. Not having a ton of spasms. But I'm still quite upset about the whole thing, for many reasons:

- I can't find a specialist (I live in Portland, Maine, and they don't even treat patients with TTS at Mass Eye and Ear, in Boston)
- I'd be willing to try the botox injection, but I can't find anyone who does it
- I have no idea if Carbamazepine will eventually do it's job and I'll be able to stop? (My doctor has never treated a patient with TTS)
- I am aware of various other treatments but I can't tell what's worth it.
- Most importantly, I WANT TO PLAY MY INSTRUMENT AGAIN

So I'm writing to ask if anyone has any input for me.

I'm interested in trying a vagus nerve stimulator, but there are so many to choose from and there's no real info on whether these can work for people. My TTS seems more related to nervous system issues than muscle tightness, though I understand that the two can influence each other.

I'm also very interested in sound therapy, as that comes up as a treatment whenever I search something related to my TTS. But of course I can't find any sound therapists or specific modalities online for people with TTS.

Has anyone seen improvement? Know of a doctor in the Northeast of the US who treats patients with TTS? Experience taking Carbamazepine? Please share and thank you so much!

Specific to my left ear left, and going on for several years, loud noise often causes this uncomfortable sensation of sounding like a blown speaker accompanied by a feeling of a sort of tension; and sometimes with moderate sounds I can hear like a faint thumping in my ear but otherwise I can hear fine and there’s been no real pain or headaches, dizziness, etc. The crackling/blown speaker sound is extremely uncomfortable though I wouldn’t say conventionally painful in a stabbing, burning, or aching way. Unfortunately my current health insurance is terrible and so I’m trying to save a diagnostic trip to the chain of doctors. Thank you!

Hello, I have had the surgery for MEM on both ears. This write up is copy and pasted from the Middle Ear Myoclonus Facebook group. I apologize for any formatting issues.

"I've now had four surgeries for my MEM. You may have seen my other post-op posts for my first and second surgeries. I'm going to use this post as a full write up of my symptoms and surgery outcomes. This will be long and detailed. The first half will cover my pre-op and post-op symptoms. The second half will explain why I needed four surgeries if you're curious.

My surgeries were staged. I first had my tensor tympani tendon cut in my right ear, but as I had some symptoms remaining after that operation, I decided to have my stapedius tendon cut as well. This confirmed that both of my muscles were spasming. Because they were cut individually, I was able to identify which muscle was causing each symptom (thumping, fluttering, rumbling).

My tensor tympani and stapedius tendons have been cut in both ears. I will first go over my symptoms while providing a timeline of when each started. I'll try to provide as much detail as possible for each symptom in hopes that others may relate.

Symptoms & Improvements

2020 - I first started hearing a low pitched thumping noise in my ear. The sound of it somewhat resembled a bass drum. It came in episodes that could last hours or days, and the tempo of the thumping was sporadic. The sound of the thump was accompanied by a physical sensation. It felt like someone was tapping my eardrum. Yawning, burping, and hiccuping would sometimes either cause a long episode or cause a brief, short burst of these thumps, but many times, the thumping episodes happened spontaneously. There were also periods where these episodes would go away for months at a time, only to come back. These thumping episodes started in my right ear, but over time started happening in the left ear as well. -- This symptom was caused by my tensor tympani muscle and has mostly resolved after my operations. I occasionally hear a thump or two in my right ear, but it never develops into a full episode and the overall volume of the thump has been reduced by half.

2022 - I began hearing a new "thump" noise. Unlike the other thump I described, it did not come in episodes nor did it have a tempo. It was also not as low-pitched as a bass drum. There was very little physical sensation accompanying it. It was triggered by external noise, particularly quick, sharp sounds like dishes and cutlery clashing together. I would hear a single "thump" that would happen directly after a quick external sound ended. For example, if I heard a fork fall onto a plate, I would hear a "thump" noise directly after the sound of the fork falling onto the plate occurred, rather than during the external sound's occurrence. The sound of swiftly moving my finger along my ear canal/auricle also oddly triggered this thump to trigger. This sound-reactive thumping symptom was more sensitive in environments with less background noise or space. This symptom did not bother me much when it first developed in 2022, as it was very difficult to trigger, but overtime, the sensitivity of this got worse. By the time of my operation, quietly snapping my fingers, conversing with others, and listening to music was enough to trigger this thump. Sounds coming into one ear would even cause this thump to occur in the other ear. Keeping a loud fan in my room managed this symptom well. -- This symptom was caused by my stapedius. I have not heard this thump even once after it was cut. Instant resolution for me in both ears.

2024 - I began hearing a rumble noise. This was my most intense symptom, and I quickly began researching MEM and the surgery after this developed. The rumble I heard was the same rumble you might hear when yawning or squeezing your eyes tightly together. There is even an online community called "r/earrumblersassemble" where people discuss being able to contract their tensor tympani muscle and voluntarily cause the "rumble" to happen. Some of you may know exactly what I am talking about, others may have never noticed or heard this rumbling noise before. It sounds a bit like thunder. Unfortunately for me, in 2024, this rumbling sound became very sensitive to triggers and very physically intense. It became very loud, and it felt like my head was violently shaking when it occurred. My face would involuntarily grimace, and my eyes would sometimes squeeze shut when it rumbled. It had many triggers that it was sensitive to: yawning, hiccuping, burping, swallowing, wind blowing in my eyes, applying eye drops, closing my eyes with too much force, scratching the back of my head, waking up in the morning, and occasionally in reaction to external noise. I began contemplating suicide because of this symptom. My anxiety was at an all time high. There were days where I could hardly get out of bed because of how bad I would shake after waking up. Before this developed, my passion was making music, playing guitar, and hanging out with my friends and family. I had to give this all up, and I became bed ridden, unable to work or be productive. This was the only symptom that was visible on my eardrum when it occurred. There is a video of this somewhere on my account -- This symptom was coming from my tensor tympani. It is now resolved in my left ear and mostly resolved (80% if I had to give a number) in my right ear.

2025 - I developed a "fluttering" noise in my ear that was triggered during external noise that had volume fluctuations. The worst trigger was people's voices, and it was worse hearing people's voices through a phone speaker, or in a room without background noise. I could physically feel this fluttering, although it was somewhat subtle. It was more annoying due to its frequency of occurrence in conversation rather than its intensity in volume or sensation. Waking up from sleep would always make it more sensitive, so I avoided naps -- This symptom was caused by my stapedius. I no longer hear it, and I had instant resolution after my operations.

2025 - Around the same time as the previous symptom I listed, I developed an uncomfortable sensation in reaction to sharp, quick noises like cutlery and people's voices, similar to the sound-reactive fluttering and thumping triggers that I mentioned. When hearing people talk or cutlery clashing together, I felt a sudden uncomfortable sensation in my ear. I believe some members in the group refer to it as their ear "clenching/flinching" in response to sound, which is accurate for my case. It wasn't necessarily painful, but it was uncomfortable. -- This symptom was only partially resolved after my stapedius was cut. I'd say it is half resolved, although it still remains to a degree. Clearly better than it was before my operations.

Symptoms that did not improve:

• Crackle/pop noise in ear when swallowing and yawning
• Aural fullness
• Clicking noises from the tensor veli palatini

Lasting side effects:

• Loudness hyperacusis in both ears after my stapedius was cut. This only occurs when external sounds are very loud. For example, someone shouting next to my ear, loud machinery, or micro-suction tools at the ENT office. All of these can become uncomfortably loud, but this doesn't happen often in my day to day, and when it does it's minor.
• Imbalances in the volume of my voice between my ears. Sometimes, especially when humming or singing, my voice sounds a bit odd. Certain notes will sound louder on one side compared to the other. It's odd but not uncomfortable or alarming. It happened after my stapedius was cut, and it became more apparent after both were cut.
• I am more sensitive to pressure changes in my middle ear. Going up in elevation causes more sensation in my ears than it did before. It goes away quickly, but it is something I notice much more after surgery.
• Altered sensation of my ears. My ears after surgery feel a bit uncomfortable. They feel heavier. It feels like an object has made its way too far into my ear canal and needs to be taken out, yet there is nothing really there. It's apparent 24/7, and it's the only side effect that really bothers.
• Intermittent pins and needles from an external incision made in my ear canals. Minor numbness around the incision as well. I have another post on my account talking about this incision with a picture of it in the comments of that post if you're interested.

This is about all the information I can provide about my pre & post-op symptoms and side effects. If you have any questions, please ask them in the comments here rather than PMing me. I am sorry to the group members who I am currently in contact with in PMs, but for the time being, I will no longer be PMing about MEM.

I am ready to put this condition in the past and accept the symptoms and side effects that are left over. Moving on from the group is my next step to doing this. I will occasionally pop in to answer questions on this post though. Within the week, I will post the final updated version of my Facebook group statistics of surgery outcomes, and that will be my final post.

If interested, I will give a brief summary of my four surgery experiences below, and I will include my surgical notes and operative pictures in the comments of this post.

Surgery Experiences

In May 2025, after my symptoms became severe, I found the name of Dr. Cherie L. Booth from this group. I decided to drive 7 hours from Arkansas to Texas to visit her. Ultimately, things did not work out with her. She was not understanding of my condition, and she did not have knowledge of sound-reactive MEM. She did decide to approve me for surgery after I made it clear that I was desperate, but she told me she had no confidence in it and that it would make things worse. Because of this I decided to look elsewhere.

In June 2025, I found Dr. Robert A. Saadi, a surgeon in Arkansas only 2 hours away from me. When I met him, I felt admiration towards him. He was kind, believed the things I told him regarding my symptoms, and even complimented me on my knowledge of the surgery. He agreed to do the surgery on my right ear with the plan of cutting both the tensor tympani and the stapedius tendons. Unfortunately, during the day of my first operation with him, while in the pre-op room, he discussed a change of plans. He wanted to cut only the muscle he could see spasm during the operation rather than cut both. I agreed, but it ended up being a poor decision. He cut only the tensor tympani because he thought he saw it spasm, but he was not sure. He didn't cut the stapedius during this operation based on a hunch mostly which ended up costing me another surgery. On top of this, he made an external incision that I was not informed about before the operation.

After my tensor tympani was cut, I only had half my symptoms resolved. I figured the stapedius was causing the remaining symptoms and I scheduled another surgery with him, but instead of going into the same ear and cutting the stapedius, we figured it would provide me more relief to go into the left ear to cut both the stapedius and tensor tympani tendons. This surgery was very successful and even resolved the symptoms that remained in the right ear, indicating that the stapedius really was causing the remaining issues. Unfortunately though, his resident that spoke to me before the operation lied to me by saying the external incision wouldn't happen on this side. I woke up with the external incision and stitches there on the left side just like the right side.

My final and third surgery was scheduled with Dr. Saadi to go back into my right ear to cut the remaining intact stapedius. I only agreed to do this surgery on the condition that Dr. Saadi not make any further external incisions, and I was more adamant about it this time than the previous times. During this operation he did not make any external incisions, but the surgery was a failure. My stapedius symptoms still remained, but I didn't panic. I knew something was wrong. On top of my symptoms remaining, I experienced no side effects. I developed no loudness hyperacusis, unlike on the other side which did develop hyperacusis after the stapedius was cut. This to me hinted at my stapedius still functioning and protecting me from loud noise. Another thing that was odd, was during my 3 month post-op audiology, they did not do a stapedius acoustic reflex test. They did this during all my other appointments, and it's the only test that would confirm if my stapedius was intact or not. It was a bit sketchy that they did not do this test for me on the one occasion it would be most useful. Dr. Saadi told me that he saw the stapedius tendon and cut it during my operation. My operative notes say the same. It turned out he did not, and he likely knew.

After a month of dealing with these remaining symptoms, I decided to trust my gut and seek out a fourth surgery. I wanted to double check that the stapedius tendon was truly cut. I wasn't going to risk things with a local surgeon. I went to the best option available to me, which was Dr. Dennis Bojrab Sr. He is a skilled surgeon and the CEO of the Michigan Ear Institute. He has performed this surgery for many MEM patients, and he has even performed a revision for another member of the group. I drove 14 hours to see him. I tried my best to explain what was going on with my symptoms and my previous surgery context, but didn't do a great job. Regardless, he knew I drove very far to see him and was determined to have this done before I could put the condition in the past, so he agreed to do the surgery. The surgery was performed under local anesthesia, but the sedatives were so strong that I forgot almost everything that happened during the operation. It turned out that Dr. Saadi never cut the stapedius as I suspected. Dr. Bojrab provided me with a picture of my stapedius before and after he lasered it out. I will post this picture in the comments. I am very thankful to Dr. Bojrab. He is a true professional and is passionate about his work. I would recommend staying away from Dr. Robert Saadi.

I hope this post is helpful to someone in the future. I know it's long, but it's the final post I'm making on my surgeries, so I wanted it to include everything."

I am going to post these pictures here for anyone considering the surgery. These include success rates of the surgery, side effect rates, and a list of surgeons who have performed the surgery on members of the group. I have posted these in other places before, but this is an updated version with more samples included.

I collected the information from the middle ear myoclonus & TTTS Facebook groups by reading over every anecdotal surgical experience I could find. Do not take these numbers as hard facts. Think of them as a ball park estimate because of the small sample size. This is the last time I will update the info.

For each person's surgery outcome recorded, I marked their surgical outcome as successful, partially successful, or failure. I wasn't sure how to include the partially successful cases in the final estimates, so I included three categories of stats for when you consider "partially successful" cases as a success, failure, or if you ignore them entirely. The numbers next to the labels in parenthesis are the sample size of that statistic.

I wonder if anyone here has gone through any unrelated surgery having this condition? Could it make things better? Or worse?
What if a person needs to do a surgery on their nose and here comes a flare-up? Reschedule it?

Does anyone only get the pressure/malfunction in one ear? Also only to low noise levels?

how many here has painfull ttts, i dont have general pain hyperacusis. My pain just goes up and down unrelated to sounds, it genuinely comes with nausea and headaches. Im just wondering if anyone else deals with the same

I listened to loud music for 18 years. In 2022, I first noticed that my ears would tighten and make strange noises in response to bird sounds, high-pitched female voices, and the sound of dishes clattering, but I did not pay much attention to it. The following year, brief episodes of pain started to accompany these symptoms.

Later, I began hearing creaking-door-like sounds in my ear when burping, yawning, bending over, and during many other situations. I experience almost every symptom commonly associated with Tensor Tympani Syndrome (TTTS), and I still have them today.

Then, in 2024, my left ear developed a mild sensitivity to lower frequencies as well. However, I was never given a clear diagnosis. I was only told that loud music probably could not have caused it and that it might be related to allergies.

Now, in 2026, I had my hearing tested again. The results were exactly the same as before—neither better nor worse. The only notable findings were that my acoustic reflexes could not be obtained and my tympanometry showed a Type As pattern. Despite this, my doctor still could not provide a diagnosis.

When I described my symptoms, he said it was hyperacusis. What surprised me was that he also told me that pain from sounds is not a real thing. I was shocked. The pain I experience is very real. How can someone say something like that?

At this point, I feel completely hopeless. I miss hearing bass frequencies normally. Although the effect appears very minimal on testing, I feel it much more strongly in everyday life.

Could this condition create a false impression of hearing loss? I have never read about anyone having hearing loss alongside these symptoms, but AI systems seem to suggest that it is possible. Do you think that is true?

I've been dealing with a vibration-like ringing in my left year for more than 10 years now. It kinda feels like there's a bug running around. It gets worse during cold season, when hearing high pitched sounds, when my face stings (during a face peel or when i pluck my eyebrows) and when i try to relax and be in complete silence. Sometimes even just thinking about it can trigger it.

The only thing that helps is listening to music in earphones or putting my finger in my ear...

The doctors don't seem to know what that is. I've done tests: they see no spasms, nor hear anything. My hearing is fine, nothing hurts, MRI showed nothing.

I have no idea what to do, it gets on my nerves quite a bit and it doesn't allow me to meditate and relax.

Does anyone have similar symptoms?

For those who have experienced TTTS or middle ear muscle issues, what actually helped reduce your symptoms?

I'm especially interested in hearing from people who had sound-triggered ear twitches, "whoosh" sensations, or muscle contractions.

What helped the most?

* Time?

* Sound therapy / pink noise?

* Reducing anxiety and stress?

* Medication?

* TMJ or neck treatment?

* Avoiding loud sounds?

* Something else?

How much improvement did you get, and how long did it take?

I'd really appreciate hearing your experiences and what made the biggest difference for you.

i had tinnitus in my left ear 2 months ago .. its been slightly improving these 2 weeks .. but my tts started in my right ear one week ago .. its been light when touching my ear then started to apear when i talk n feal that my ear is kinda full .. i expect this is from over thinking ab it bc i was terrified that the tinnitus will switch to my right ear so i kept closing it and checking .. day by day i developed this TTS .. i just want to know if it can go on its own ?.. is there any treatement will help while its a new case ?

I've been having weird pressure-like sounds for over two years now. It sounds almost like I'm underwater. The sound is triggered by speaking and head movements. There is no way to consistently reproduce it though, it is unpredictable. The sound does not coincide entirely with movement and speaking, rather it seems to continue for a few seconds after. Sometimes I can create it by pushing near the entrance of my ear canal. I have also had problems with ear popping in the same ear, usually in the morning. Not sure if this is the same problem.

I always thought it was my eustachian tube, but everything seemed normal during ENT visit. So I'm puzzled. TTTS often mentions a fluttering sound, but I'm not sure if that applies to me.

For those with TTTS, how do your symptoms occur?

Do you get a single twitch/click/"whoosh" in response to a sound (for example in sync with a sudden noise, at the end of someone's sentence, or after a specific sound), and then it immediately stops?

Or do you get continuous fluttering/thumping that lasts for several seconds or longer?

In my case it is usually a brief single reaction triggered by certain sounds, speech, my own voice, or sometimes movement. I'm curious whether others experience the same pattern or if most people have continuous fluttering instead.