Random Onset of New Kind of Ear Spasms / TTTS — Any Suggestions?

[DimLeb]

The last few days I've been having a new kind of annoying spasms that many of you are familiar with. I'm not new to TTTS, as I've been having it for around 2 years now (since my tinnitus onset), but this is something new.

I have got used to my normal TTTS in both ears, as it's triggered in relation to short sounds in relative silence, or with other random stuff like scratching my face, turning on knobs, certain vowels from voices etc. At louder environments, it doesn't happen altogether.

However, this new one starts on its own in only the right ear, mostly (not always) when I do the movement that happens when you hiccup or stretch the neck/head from the inside (I don't know how to describe it better). So, the right ear starts thumping/spasming something like once every 10 seconds, or 2-3 rapid thumps and this can go on for a few minutes to maybe 1.5 hours. Thankfully, it stops at some point and it doesn't happen every day. I can also stop it entirely if I plug that ear with my finger or an earplug.

Now, I need to mention that I also often have mild muscle twitching at the neck on the side of that ear that also does its thing for some time and then stops - maybe they could be related? Maybe ETD? Magnesium deficiency? Any ideas?

It's almost funny how the ears find new stuff to bother us with. Especially now that I'm doing okay with the tinnitus.

 

[Jakob]

I have pretty much the exact same thing going on in my right ear. A couple of thumps every 10-20 seconds, sometimes apparently resulting from yawning or burping, and then going on like that for like half a day or more. Then several days of pause before it comes back. It really annoys me and makes me rather grumpy when it happens, but I'm trying to remind myself that it comes and goes...!

I have started to write down when it happens to see if there is any sort of system to it.

Mostly it disappears the morning after, but I have also experienced a couple of times when it has continued for a day and a half.

This is on top of the usual background of tinnitus and clicking sounds in the left ear. Always great entertainment going on in those ears, it seems!

 

[DimLeb]

I have pretty much the exact same thing going on in my right ear. A couple of thumps every 10-20 seconds, sometimes apparently resulting from yawning or burping, and then going on like that for like half a day or more. Then several days of pause before it comes back. It really annoys me and makes me rather grumpy when it happens, but I'm trying to remind myself that it comes and goes...!

I have started to write down when it happens to see if there is any sort of system to it.

Mostly it disappears the morning after, but I have also experienced a couple of times when it has continued for a day and a half.

This is on top of the usual background of tinnitus and clicking sounds in the left ear. Always great entertainment going on in those ears, it seems!

Yeah it sucks so much. Even though I'm much less anxious about it (compared to the first times) since I know it will stop eventually, it's still very distracting while doing things. My worst enemy now is the burps or hiccups, so I try to relieve them by swallowing the air at my throat and stopping whatever muscles are involved in their motion. But it still happens in other involuntary movements (sometimes and sometimes not).

It hasn't happened for more than 3 consecutive hours to me though, and it certainly stops after sleep if it started a few hours before sleeping, like yours.

I think I've read that it can be related to the trigeminal nerve being irritated by something and thus causing some muscle to twitch there. Apparently, hiccups, or so, can trigger one or two ear spasms, but I'm not so sure about this happening for a long time.

I also started taking Magnesium for around 3 weeks now, but it doesn't seem to have done anything - when it happens, it happens. I'm certain it is associated with our general condition of having tinnitus and our ears being shitty and that.

 

[DimLeb]

Just an update.

I still have this crap. These spasms/thumps in the right ear can start after an internal burp or yawn or randomly. I have it now as I'm writing this, happening once every 5-10 seconds.

I tried to cut off coffee which I started drinking everyday for the past few months (after realising it has no effect on my tinnitus), so that would maybe help this thumping. I went 5 days without thumping happening. But nope, it was short-lived and it came back on the 6th day, and today (8th day) I have it happening for a few hours now.

It takes quite an effort to concentrate on anything with your ear thumping like mad and it is really annoying. I don't know what else to try, since I'm taking Magnesium supplements.

 

[Ngo13]

You can see about a muscle relaxer. Otherwise just time. Last resort is surgery.

 

[RunningMan]

I have had just a few instances of TTTS flutter in my left ear over the last 18 months, when my tinnitus intensity increased significantly, and the flutter was always in response to a speaking voice (real or on computer). When audio was paused, TTTS stopped.

Last Monday, I experienced this same flutter in my right ear, initially started fluttering after reading some news that caused me sudden anxiety. These were mostly quick flutters, not seconds between them. I stopped all sounds, and it continued, so this was different than the left ear TTTS I had experienced a few times. I took an hour bike ride wearing earplugs, and it did it some more after I got back home before the fluttering finally stopped for the evening. And then a short time the following morning it did it before getting out of bed, but not once I was up.

Well, here we are 6 days later, and it did it a bit when I woke up around 4:30 AM and some more when I woke at 7 AM and continued after stopping fan and cricket sounds. It was still intermittently fluttering after getting out of bed, using the computer, and walking around for a half hour. It's stopped for now, but it's concerning this has now happened twice about a week apart after not experiencing anything like this in my right ear for the first 18 months of this ordeal. It's been a few weeks since I've experienced the sound reactive TTTS in my left ear.

It seems like anxiety plays a role - the right ear flutter literally started on cue the first time it happened when I felt anxiety in response to news that gave me sudden anxiety. Someone mentioned that TTTS seemed to be triggered more after having worn earplugs for longer time periods (not while wearing them). I do wear them biking (often for an hour) and driving (only shorter drives lately) but not when sleeping. I do have higher anxiety in the mornings. I can't say whether or not any head movements, yawning, etc. affected it. I thought walking barefoot on a hard floor might have triggered some fluttering after I had gotten up - not certain. It's stopped for now.

 

[RunningMan]

After weeks, I'm still experiencing this TTTS ear fluttering at some point most days without a sound stimulus that initially would cause it when I first experienced it. It has even done it once when waking in the middle of the night (just white noise type sounds playing) and sometimes after I woke up in the morning. And it has occurred with both ears but not at the same time. Also, since my previous post, it did appear to be initially triggered by some head movements on a few occasions.

Maybe a coincidence, but I feel like my hyperacusis has gotten worse in the last week where more everyday sounds seem louder and uncomfortable, like setting utensils on a plate, some TV show sounds effects and music, cupboard door closing, the sound of a door lock mechanism unlatching (spring loaded), self-checkout audio at grocery store. I had not really even considered myself as having hyperacusis prior to this last week, but I think I do to a mild degree, to louder sounds.

My tinnitus itself hasn't had any recent changes and is very similar going back 18 months to when it suddenly intensified and started cycling through different sounds and intensities. It doesn't seem to be reactive to external sounds.

 

[Ngo13]

After weeks, I'm still experiencing this TTTS ear fluttering at some point most days without a sound stimulus that initially would cause it when I first experienced it. It has even done it once when waking in the middle of the night (just white noise type sounds playing) and sometimes after I woke up in the morning. And it has occurred with both ears but not at the same time.

I believe ear fluttering in the absence of sound is more MEM than TTTS. I think they are related but may involve different muscles.

 

[DimLeb]

After weeks, I'm still experiencing this TTTS ear fluttering at some point most days without a sound stimulus that initially would cause it when I first experienced it. It has even done it once when waking in the middle of the night (just white noise type sounds playing) and sometimes after I woke up in the morning. And it has occurred with both ears but not at the same time. Also, since my previous post, it did appear to be initially triggered by some head movements on a few occasions.

Maybe a coincidence, but I feel like my hyperacusis has gotten worse in the last week where more everyday sounds seem louder and uncomfortable, like setting utensils on a plate, some TV show sounds effects and music, cupboard door closing, the sound of a door lock mechanism unlatching (spring loaded), self-checkout audio at grocery store. I had not really even considered myself as having hyperacusis prior to this last week, but I think I do to a mild degree, to louder sounds.

My tinnitus itself hasn't had any recent changes and is very similar going back 18 months to when it suddenly intensified and started cycling through different sounds and intensities. It doesn't seem to be reactive to external sounds.

I'm doing somewhat similarly. For example, it didn't happen at all for like 4-5 days in succession and then I had it when I woke up (I don't know if it was happening when I was asleep) and it continued for 3 hours - 1-2 thumps per 10-20 seconds, right ear. Then it stopped for the whole day, and it happened again for 1 hour in the morning the next day. Yesterday, I also had a very rare thumping in the left ear (which almost never happens) - 5-10 rapid thumps over 5 seconds which scared the f*ck outta me.

I agree that it's more like MEM at this point. Note that I also have the type that is reacting to those sounds (TTTS) in both ears since almost the beginning of my tinnitus, and it also seems to be a bit worse these last days - thumping more easily and to more sounds. I think it's used to having worse and better periods though.

To be honest, I'm really scared that the MEM could become permanent at some point. It's not so much the sound, but the sensation that comes with it, like an earthquake of some kind on the half of your head. Really disturbing, but at least it's not too bad for me in the sense that it usually happens for a split second every 15 seconds or so. But those rapid thumps yesterday, that I mentioned above, were really a next level of hell.

Still, the only viable treatment for this seems to be surgically cutting those muscles - probably both of them. At least, that seems to cure any MEM, but I don't know what other side effects it could have.

 

[RunningMan]

I believe ear fluttering in the absence of sound is more MEM than TTTS. I think they are related but may involve different muscles.

TTTS is a type of MEM. But you are correct there is another muscle (stapedius muscle) that can be involved that is not TTTS. But the sensation I get with no sound stimulus is identical to the sensation I get from sound stimulus. The flutter in response to some sounds has been rare and was in response to talking, so the flutters occurred with less gap between them during the sound stimulus event, but otherwise felt the same as with no external sound stimulus. And I read that anxiety could trigger it. I've actually had it start a couple times right when I was feeling anxiety coming on.

I'm doing somewhat similarly. For example, it didn't happen at all for like 4-5 days in succession and then I had it when I woke up (I don't know if it was happening when I was asleep) and it continued for 3 hours - 1-2 thumps per 10-20 seconds, right ear. Then it stopped for the whole day, and it happened again for 1 hour in the morning the next day. Yesterday, I also had a very rare thumping in the left ear (which almost never happens) - 5-10 rapid thumps over 5 seconds which scared the f*ck outta me.

I agree that it's more like MEM at this point. Note that I also have the type that is reacting to those sounds (TTTS) in both ears since almost the beginning of my tinnitus, and it also seems to be a bit worse these last days - thumping more easily and to more sounds. I think it's used to having worse and better periods though.

To be honest, I'm really scared that the MEM could become permanent at some point. It's not so much the sound, but the sensation that comes with it, like an earthquake of some kind on the half of your head. Really disturbing, but at least it's not too bad for me in the sense that it usually happens for a split second every 15 seconds or so. But those rapid thumps yesterday, that I mentioned above, were really a next level of hell.

Mine hasn't gone away for more than day in the last week, but it doesn't go on for hours. It was doing it in bed for a while this morning after waking up the last time. Like one flutter every 30 seconds. It started after rolling over on side on that ear for a little while, then continued after I rolled back on my back. It actually stopped before I got out of bed.

Other than that rapid thump occurrence, does the sensation of those thumps/flutters feel any different to you whether it's in reaction to external sound or just spontaneously? To me, they feel the same, but the flutters would be more frequent in response to the talking sounds rather than 20, 30 second gaps between flutters in the absence of sound stimulus. I assume it's the TTTS type of MEM.

 

[Ngo13]

Still, the only viable treatment for this seems to be surgically cutting those muscles - probably both of them. At least, that seems to cure any MEM, but I don't know what other side effects it could have.

Some people have success with muscle relaxers for TTTS/MEM.

From what I've seen, side effects of surgery are the muscles reattaching (so not successful), new/worse tinnitus and new/worse hyperacusis or sound sensitivity. It seems to me like a true last resort.

 

[DimLeb]

Mine hasn't gone away for more than day in the last week, but it doesn't go on for hours. It was doing it in bed for a while this morning after waking up the last time. Like one flutter every 30 seconds. It started after rolling over on side on that ear for a little while, then continued after I rolled back on my back. It actually stopped before I got out of bed.

Other than that rapid thump occurrence, does the sensation of those thumps/flutters feel any different to you whether it's in reaction to external sound or just spontaneously? To me, they feel the same, but the flutters would be more frequent in response to the talking sounds rather than 20, 30 second gaps between flutters in the absence of sound stimulus. I assume it's the TTTS type of MEM.

Ah, that's tough. There seems to be a pattern with the sporadic thumps every 20 seconds because I've read that in some people's experiences over the internet, too. It also sucks that it seems to be triggered by random movements, or completely randomly (the latter seems to be happening to me after I thought about it).

The sensations for me, between the reacting spasms and the spontaneous, are almost the same, but the spontaneous feel kind of deeper, while the reacting (normal TTTS) is more "clickier" and a bit more outside. Each ear has a bit of variation as well. All in all, it sucks big time.

I've read somewhere that ear myoclonus is as rare as 1 / 100.000 people. What a bad f*ckin luck it is, especially when my tinnitus is almost zero of a problem for me these days.

Some people have success with muscle relaxers for TTTS/MEM.

From what I've seen, side effects of surgery are the muscles reattaching (so not successful), new/worse tinnitus and new/worse hyperacusis or sound sensitivity. It seems to me like a true last resort.

Yeah, that sounds about right. Even though I've read about muscle relaxers, I don't trust them to be a viable solution because they are not very selective at treating such a local muscle spasm, so it seems very hit or miss. Meanwhile, some of those are quite heavy drugs (for epilepsy or something), that I'm quite scared to try out because of a possible tinnitus worsening.

These options are kind of a double-edged sword imo. Right now what I have is liveable, because it doesn't happen all the time or every day. But as you already know, these conditions are unpredictable and brutal, so yeah...

 

[RunningMan]

Ah, that's tough. There seems to be a pattern with the sporadic thumps every 20 seconds because I've read that in some people's experiences over the internet, too. It also sucks that it seems to be triggered by random movements, or completely randomly (the latter seems to be happening to me after I thought about it).

The sensations for me, between the reacting spasms and the spontaneous, are almost the same, but the spontaneous feel kind of deeper, while the reacting (normal TTTS) is more "clickier" and a bit more outside. Each ear has a bit of variation as well. All in all, it sucks big time.

I do have an occasional clicking sound, but it started over 4 years ago when my tinnitus was mild and over 2 1/2 years before my first experience with this ear fluttering with or without sound stimulus. But that clicking over the years seems random, not responding to sound, has gone weeks or months without happening at times, and has only happened in the left ear. I think it's the same clicking sound I can often voluntarily reproduce in each ear. I believe in my case, it is Eustachian tube and peritubal muscles.

These other sounds that I think are MEM/TTTS are more fluttery/thumpy in nature, and I can't voluntarily reproduce. By the perceived sound of them, and sometimes responding to external sounds, and flaring up at high anxiety points, the fluttering/thumping seems more like TTTS form of MEM.

 

[DimLeb]

I do have an occasional clicking sound, but it started over 4 years ago when my tinnitus was mild and over 2 1/2 years before my first experience with this ear fluttering with or without sound stimulus. But that clicking over the years seems random, not responding to sound, has gone weeks or months without happening at times, and has only happened in the left ear. I think it's the same clicking sound I can often voluntarily reproduce in each ear. I believe in my case, it is Eustachian tube and peritubal muscles.

These other sounds that I think are MEM/TTTS are more fluttery/thumpy in nature, and I can't voluntarily reproduce. By the perceived sound of them, and sometimes responding to external sounds, and flaring up at high anxiety points, the fluttering/thumping seems more like TTTS form of MEM.

I think I know which clicking sound you're talking about because it happens to me too. It's a one-time click in my left ear that happens completely randomly (more frequently since my tinnitus and all other shit started) and feels/sounds similar to the cracks my Eustachian tubes do when I swallow.

So yeah... Thinking about that, I got an impressively wide range of clicks and thumps lol. TTTS reacting to short sounds in relative quietness in both ears, spontaneous thumps/MEM some days of the week in right ear, cracks when I shallow in both ears and that random one-time click in left ear. And it's only the spontaneous MEM that really bothers me and I'm miserable when it happens, but I can at least pause it with plugging the ear.

I don't know if I already asked you, but can you stop any of yours with plugging the ear(s)? Either with an earplug or fingers?

 

[RunningMan]

I think I know which clicking sound you're talking about because it happens to me too. It's a one-time click in my left ear that happens completely randomly (more frequently since my tinnitus and all other shit started) and feels/sounds similar to the cracks my Eustachian tubes do when I swallow.

So yeah... Thinking about that, I got an impressively wide range of clicks and thumps lol. TTTS reacting to short sounds in relative quietness in both ears, spontaneous thumps/MEM some days of the week in right ear, cracks when I shallow in both ears and that random one-time click in left ear. And it's only the spontaneous MEM that really bothers me and I'm miserable when it happens, but I can at least pause it with plugging the ear.

I don't know if I already asked you, but can you stop any of yours with plugging the ear(s)? Either with an earplug or fingers?

Yeah, that clicking sounds the same, although when it happens with me randomly, it might do it a few times quickly, but then that's it for days or longer, so that one doesn't really bother me either since it is quite brief and occurs so seldomly. Even the sound stimulated fluttering/thumps have been rare, but I've avoided listening to much "speaking/voices" on the computer, which is what triggered it the last couple times.

Like you, it's the spontaneous flutter/thump that bothers me the most It happens more often, and it will happen sometimes when I wake up and want to get back to sleep, which makes it even worse. And it concerns me that if it happens too much, it could cause pain, so there's just more overall anxiety about it, and anxiety apparently makes it worse. It didn't happen for about two days, but early this morning ~5AM, when I rolled to side with my right ear on pillow, it started to do it. So, I've had that position trigger it a couple different times shortly after rolling to that side. I got up briefly and lied back down on my back, and it didn't start back up, but it has happened while lying on back also.

Regarding earplugs, one of the first times the fluttering happened spontaneously, I put in foam earplugs to take a bike ride. And it felt like there were a couple more thumps shortly after inserting them, but I was riding soon after, and it didn't reoccur until later after finishing the ride and removing the earplugs. So, I'm not sure if they will stop it or lessen it, but it didn't appear to have an immediate effect at least.

 

[RunningMan]

I don't know if I already asked you, but can you stop any of yours with plugging the ear(s)? Either with an earplug or fingers?

I have a follow up on this. I was watching a YouTube review for a product, listening through computer speakers, and my left eardrum kept fluttering when the presenter spoke, so it was pretty constant. I put a foam earplug in the left ear. But even a minute later, my left eardrum was still fluttering to the speaking. Then I removed the earplug and put it in my right ear. That stopped by left eardrum from fluttering. I repeated that test in each ear again, and sure enough, putting the earplug in my right ear stopped the sound stimulated TTTS flutter in my left ear.

 

[DimLeb]

I have a follow up on this. I was watching a YouTube review for a product, listening through computer speakers, and my left eardrum kept fluttering when the presenter spoke, so it was pretty constant. I put a foam earplug in the left ear. But even a minute later, my left eardrum was still fluttering to the speaking. Then I removed the earplug and put it in my right ear. That stopped by left eardrum from fluttering. I repeated that test in each ear again, and sure enough, putting the earplug in my right ear stopped the sound stimulated TTTS flutter in my left ear.

This crap is weird as hell. You just can't find any logic to it, can you? I'm familiar to this though. My left ear too is fluttering in reaction to some voices, especially women voices, and I need to be in a quiet setting and the voice being directed towards the ear, or else there is no fluttering. It's really distressing and feels like the ear is gonna burst or something. My guess is that this is TTTS (not Middle Ear Myoclonus). I can plug this very ear to stop that fluttering, not the other one, though.

 

[RacWolley]

Yesterday, I also had a very rare thumping in the left ear (which almost never happens) - 5-10 rapid thumps over 5 seconds which scared the f*ck outta me.

I've had this. It's a bit scary, yeah. I first started having TTTS a year ago when my tinnitus also began. Several months ago I had several episodes of both of my ears fluttering like butterfly wings for a full 10 seconds or so. It has happened only 3 times in total, though. I also had an episode where for around a week my right ear would thump unrelated to sounds, like yours. Every 5-10 seconds. I didn't give it much thought, I tried to ignore it and focused on my studies. Thankfully it went away and it hasn't happened since. Somehow It didn't trigger my anxiety and I managed to stay calm, which I think helped a lot.

Though my tinnitus has subsided by 90%, my TTTS suddenly got worse 3 weeks ago (I think it was intermittent before, I noticed it sometimes but it didn't bother me much). It now reacts to my own and other people's voices. Silverware clanking, bags crumbling, snapping my fingers and all.

Wondering if yours has gotten better over time?

Mine has been ridiculously annoying lately.

Thanks.

 

[DimLeb]

I've had this. It's a bit scary, yeah. I first started having TTTS a year ago when my tinnitus also began. Several months ago I had several episodes of both of my ears fluttering like butterfly wings for a full 10 seconds or so. It has happened only 3 times in total, though. I also had an episode where for around a week my right ear would thump unrelated to sounds, like yours. Every 5-10 seconds. I didn't give it much thought, I tried to ignore it and focused on my studies. Thankfully it went away and it hasn't happened since. Somehow It didn't trigger my anxiety and I managed to stay calm, which I think helped a lot.

Though my tinnitus has subsided by 90%, my TTTS suddenly got worse 3 weeks ago (I think it was intermittent before, I noticed it sometimes but it didn't bother me much). It now reacts to my own and other people's voices. Silverware clanking, bags crumbling, snapping my fingers and all.

Wondering if yours has gotten better over time?

Mine has been ridiculously annoying lately.

Thanks.

About my TTTS (the reaction type), it is more or less the same as it was when it began 2 years ago along with my tinnitus. However, it has its good and bad periods where it will decide not to spasm every time with those sounds you described. But as I said above, I pretty much habituated to it, because I expect when it will spasm and I'm spasm-free when I go outside or do relatively noisy things.

It's still very disturbing though with women's voices in quiet rooms, with left ear doing a spasm to most vowels of the words. So, I try to turn my head to not be directed to that ear and it kinda works. Maybe yours will have its periods too.

Also, that's good that you kept calm with that MEM (thumps unrelated to sounds) episode. It kinda kicks my ass when I get it (1-2 days per week, lasting 1-7 hours), but thankfully my anxiety is more under control lately and I can plug the ear to block the thumps when I can't stand it anymore.

It all must be related to our auditory system malfunctioning. Like there is some kind of abnormal electrical activity or some shit. I wish they could figure something out, but no one seems to care because it's just too rare, even for people with tinnitus.

 

[RunningMan]

I have the TTTS type of MEM, sometimes to voices, where it will flutter more frequently, and other times spontaneously without sound stimulus, where it might be a single flutter thump every 30 seconds or so, which it's doing right now. I don't think it's continued for more than an hour at any point and may not happen some days. The problem seems about the same over the last 2 months. But it was odd that after the first time experiencing TTTS fluttering back in early 2022 to a voice, I didn't experience it again for about 16 months, when it then became more regular and started experiencing the spontaneous TTTS thumps as well. While the sound (voice) stimulated TTTS fluttering will happen sometimes at my computer watching a YouTube video with a voice speaking, I've never had it happen while watching TV.