First Post — 16 Years of Tinnitus and Now Middle Ear Myoclonus — Also Some Words of Advice

[ZZZK]

Hello everyone! This is my first post and I wanted to introduce myself as well as tell my story. Perhaps it can benefit some of the people here who recently came down with tinnitus.

As a dumb teenage kid growing up in the 90's I listened to lots of loud music and definitely did my fair share of hearing damage over that time. It all came to head however when I went to an underground warehouse rave when I was 21 years old and spent 4 hours dancing in front of speakers with friends. When I got out of that place I noticed my hearing was completely muffled. I tried to sleep it off but unlike every other time I had similar muffled hearing my hearing stayed muffle. It did not return to normal for a good 2-3 days and when it did I was left with quite noticeable tinnitus especially in my left ear.

This drastically affected me and made me absolutely miserable and psychologically distressed. It also severely disrupted my sleep. Keep in mind I had also lost my dad suddenly and unexpectedly just 4 months earlier. I searched the internet for days looking for miracle cures but of course there is no cure for tinnitus. I convinced myself that there was no way I would enjoy the rest of my life and that I would be miserable for the rest of my days. I was also incredibly hard and unforgiving on myself for damaging my body and screwing up my life.

So for nearly a year I avoided noisy places like the plague. No bars, no movies, and definitely no dancing. For a young person whose friends were always out doing noisy things it made me quite depressed. Over time I became determined to take my life back so I began going out and doing the things I enjoyed. Sure I was the only person wearing ear plugs in the room but at least I was there. I also bought a white noise machine for my bed and began listening to music at my desk at work (low volume). I began to notice my tinnitus less and less.
In the years that passed I met my wife, fell in love, got married, traveled to some amazing places, and became a dad. When I was 21 and got my tinnitus I thought my life was over and that there would be no enjoyment left to live. Little did I know that best experiences and memories would be coming with that tinnitus running 24/7 in the background.

Over the years my tinnitus has bothered me less and less to where now I virtually never think about it. Now everyone has different levels of tinnitus. I can't compare how bad my tinnitus is compared to others and what constitutes disruptive tinnitus but I can tell you that I can clearly hear my tinnitus over most everyday background noise when I focus on it. Movies, noisy restaurants/bars etc. The important message here is that yes you can teach your brain to ignore it. Does ignore it mean you no longer hear it? Nope I hear it just as loud as ever when I listen for it but I just don't pay attention to it and so I don't hear it where there is no focus on it. So those suffering with tinnitus know that there is hope and please please please stop focusing on it and know that you can teach yourself to consciously ignore it. Your recovery is absolutely dependent on your ability to steer your mind away from it which you can learn to do with a conscious effort.

Now over the years I have developed a bit of hyperacusis and TTTS. I think it came around with my daughter who is quite the loud one and was always crying and shrieking as a baby. Most loud noises don't trigger my hyperacusis but for some reason putting plates away seems to trigger it the worst creating some noticeable TTTS tension with every bump of the plates.

Now last month I noticed an usual thumping in my left ear. Usually come in clusters of 2-6 thumps back to back with about 10-90+ seconds of silence between clusters (sometimes much longer). Episodes of thumping last anywhere from less than 15 minutes (not a full episode) to a full episode being 2.5-5 hours long. Time between episodes is typically 29 hours to about 4-5 days max (rare to go this long with an average recurrence at 2 days). The episodes are all the same with a slow start, a peak of frequent clusters, then a slower taper. This is either middle ear myoclonus or myoclonus of the muscles around the eustachian tube (a form of palatal myoclonus with no movement visible or sensed within the palate). This is quite an annoying and distressing form of tinnitus because it is not only quite loud and powerful (sounds like a microphone being tapped) but also a very noticeable sensation in the ear. I easily recorded it with my phone pressed to my ear. The only saving grace in my case is it isn't 24/7. From what I understand this is an incredibly rare form of objective tinnitus that none of you regular tinnitus sufferers need to worry about ever having it unless you are especially unlucky. In fact the head of surgery at the ENT center I went to had only seen 4 cases over his whole career. Quite frustrating to come down with such a rare form of tinnitus.

I do some medical research as part of my job and I can tell you the literature on middle ear mycolonus is quite thin. Anyway this got quite long. If anyone has any questions feel free to ask

 

[~elizabeth~]

Very interesting to hear others with middle-ear fluttering as well as the more usual kinds of tinnitus. Whilst it's good to hear positive messages about it, it's still very difficult as mine has gone from intermittent to constant over a period of about 4-6 months (hard to know, as I ignored it as just being a bit of wax shifting around to begin with, plus I live under the 'white noise' of powerful fans because of another condition. The problem with the fluttering is that white noise has no effect on the 'buzzing insect stuck in ear' sensation which is horrible.

I'm currently trying various things, diazepam doesn't seem to do much and meds/treatments for clearing the sinuses which do seem to help lessen the intensity if not the frequency (as I also have globus sensation in throat on the same side as buzzing, and somehow the two things feel like they are related sensations)

 

[Jemina]

I also have ear myoclonus and I find it way more annoying than my high pitched T.. probably because the muscle spasms are so rapid and hurt my ears, and worsen my hyperacusis. At first they didn't last more than an hour or so, but now I have them almost all the time.. I've had pulsatile tinnitus for 2 years but my MRI didn't show anything abnormal back then. But this ear myoclonus is scary... It started a few months ago after neck exercises and stretches. I hope this isn't some kind of nerve damage/neurologic disorder or something..! I don't want a new MRI because they are so loud...

Haven't got any help from ENT specialists, muscle relaxants don't have any effect and they have suggested botox but that doesn't sound safe! I know the muscles in the ears help reduce sounds and protect ears from sudden loud sounds etc.. so paralyzing them with botox can't possibly be safe... ?

Sounds have started to sound somehow metallic and distorted. And sudden noices are the worst, they can trigger rapid ear myoclonus episodes that last from several hours to a few days.

Also, eating seems to make the fluttering worse. I wonder if it has something to do with cranial nerves 5 and 7...

 

[Mark London]

I recently had surgery to cut both the stapedius and tympani muscles in one ear. Although I probably just had stapedial myoclonus, I think the doctor wanted to avoid having to redo the operation. I should note that my doctor is very conservative, and wouldn't have done the surgery, if he thought that there were any significant risk. He was also a highly rated ear surgeon, so I had a lot of trust in him.

Although I did have the classic fluttering and rumbling sounds, my main symptom was a low frequent buzzing sound. In a quiet environment, the buzzing would start, and would not stop unless there was significant external sound. Lying down also triggered the buzzing. I've read that other people have noticed this. Medications were of no help for me. One doctor thought that I didn't have myoclonus, because I told him that the buzzing would go on for hours (and during the whole time that I was sleeping). He thought that I had simple tinnitus. But given that it could be stopped by external noise, and that it was very low frequency, I knew that he was wrong. Given the few accounts of this condition in the medical literature, I think that symptoms can vary greatly between patients.

The doctor that did the surgery, initially also thought that I just had tinnitus. But using the medical literature, I managed to convince him otherwise. But I did wait over a year after first meeting with him, before I decided that I wanted the surgery. When I met with him again, I told him I had tried everything, and that I was at my wit's end. I don't know if that helped him to decide to go ahead with the surgery or not.

The surgery went very well. The packing in the ear is annoying, but not as bad as I expected. The clicking noise was no longer present. But the buzzing noise was still intermittently occurring, the same day of the surgery. I had read that some people are only partially helped by the surgery, so I assumed I was one of those people. But when I went back to work, the buzzing noise got worse enough, that I decided to take klonopin. In the past, this had basically not been effective. But to my amazement, it now actually stopped the buzzing!

The only initial side effect that occurred soon after the surgery, was that I developed pulsatile tinnitus, while I still had the packing in. I eventually realized that if I relaxed my jaw, that this symptom would stop. After the packing was taken out a week later, that symptom totally went away.

After the packing was taken out, initially the hearing in that ear did sound strange. But my doctor said that I had fluid in the middle ear, which would eventually go away. It took a good week before that symptom subsided.

I am still taking the klonopin. I might eventually try to reduce or stop it. But given that my symptoms are significantly reduced, I'm going to stay with what is working, and hope that my symptoms don't return.

I hope this is of help to someone! Good luck with anyone who is suffering from similar problems. - Mark

 

[shasta0863]

What should I do when this MEM and/or TTTS issue affects me now for 2 weeks? I originally had this issue in 2015, when I started hearing a vibration in my right ear. It pulsed, vroooom, vrooom, vrooom, sometimes going into one steady vrooooom if it got intense and worse. This usually subsided within a day.

Now, it is 24/7. It does not stop. It's creating pain and tightness in the ear from overuse. The only thing that happened right before it started up was me trying Decibulz ear plugs. Which I fucking regret. Since you boil them and then mold it to your outer ear (while the 3 prongs like normal plugs are inside the canal). Somehow this pushing in and molding started this thing back up. And it didn't stop, and has continued since then. The day before I lost my gran dad as well, so I was very upset and cried quite a bit, but I can't possibly see how that had an affect 15 hours later. Especially since I've cried and been upset about my REGULAR tinnitus for years.

This issue is now also causing damage, or at least spiking, my original tinnitus. I am extremely scared and I don't know what to do. Magnesium has done nothing and I'm too scared to try meds like benzo's due to not wanting my original noise induced tinnitus to get worse from it.

Is it possible for this middle ear spasm to be permanent? That it will never just stop.

 

[ringinghours]

Hello everyone! This is my first post and I wanted to introduce myself as well as tell my story. Perhaps it can benefit some of the people here who recently came down with tinnitus.

As a dumb teenage kid growing up in the 90's I listened to lots of loud music and definitely did my fair share of hearing damage over that time. It all came to head however when I went to an underground warehouse rave when I was 21 years old and spent 4 hours dancing in front of speakers with friends. When I got out of that place I noticed my hearing was completely muffled. I tried to sleep it off but unlike every other time I had similar muffled hearing my hearing stayed muffle. It did not return to normal for a good 2-3 days and when it did I was left with quite noticeable tinnitus especially in my left ear.

This drastically affected me and made me absolutely miserable and psychologically distressed. It also severely disrupted my sleep. Keep in mind I had also lost my dad suddenly and unexpectedly just 4 months earlier. I searched the internet for days looking for miracle cures but of course there is no cure for tinnitus. I convinced myself that there was no way I would enjoy the rest of my life and that I would be miserable for the rest of my days. I was also incredibly hard and unforgiving on myself for damaging my body and screwing up my life.

So for nearly a year I avoided noisy places like the plague. No bars, no movies, and definitely no dancing. For a young person whose friends were always out doing noisy things it made me quite depressed. Over time I became determined to take my life back so I began going out and doing the things I enjoyed. Sure I was the only person wearing ear plugs in the room but at least I was there. I also bought a white noise machine for my bed and began listening to music at my desk at work (low volume). I began to notice my tinnitus less and less.
In the years that passed I met my wife, fell in love, got married, traveled to some amazing places, and became a dad. When I was 21 and got my tinnitus I thought my life was over and that there would be no enjoyment left to live. Little did I know that best experiences and memories would be coming with that tinnitus running 24/7 in the background.

Over the years my tinnitus has bothered me less and less to where now I virtually never think about it. Now everyone has different levels of tinnitus. I can't compare how bad my tinnitus is compared to others and what constitutes disruptive tinnitus but I can tell you that I can clearly hear my tinnitus over most everyday background noise when I focus on it. Movies, noisy restaurants/bars etc. The important message here is that yes you can teach your brain to ignore it. Does ignore it mean you no longer hear it? Nope I hear it just as loud as ever when I listen for it but I just don't pay attention to it and so I don't hear it where there is no focus on it. So those suffering with tinnitus know that there is hope and please please please stop focusing on it and know that you can teach yourself to consciously ignore it. Your recovery is absolutely dependent on your ability to steer your mind away from it which you can learn to do with a conscious effort.

Now over the years I have developed a bit of hyperacusis and TTTS. I think it came around with my daughter who is quite the loud one and was always crying and shrieking as a baby. Most loud noises don't trigger my hyperacusis but for some reason putting plates away seems to trigger it the worst creating some noticeable TTTS tension with every bump of the plates.

Now last month I noticed an usual thumping in my left ear. Usually come in clusters of 2-6 thumps back to back with about 10-90+ seconds of silence between clusters (sometimes much longer). Episodes of thumping last anywhere from less than 15 minutes (not a full episode) to a full episode being 2.5-5 hours long. Time between episodes is typically 29 hours to about 4-5 days max (rare to go this long with an average recurrence at 2 days). The episodes are all the same with a slow start, a peak of frequent clusters, then a slower taper. This is either middle ear myoclonus or myoclonus of the muscles around the eustachian tube (a form of palatal myoclonus with no movement visible or sensed within the palate). This is quite an annoying and distressing form of tinnitus because it is not only quite loud and powerful (sounds like a microphone being tapped) but also a very noticeable sensation in the ear. I easily recorded it with my phone pressed to my ear. The only saving grace in my case is it isn't 24/7. From what I understand this is an incredibly rare form of objective tinnitus that none of you regular tinnitus sufferers need to worry about ever having it unless you are especially unlucky. In fact the head of surgery at the ENT center I went to had only seen 4 cases over his whole career. Quite frustrating to come down with such a rare form of tinnitus.

I do some medical research as part of my job and I can tell you the literature on middle ear mycolonus is quite thin. Anyway this got quite long. If anyone has any questions feel free to ask.

16 years is a long time to live with tinnitus. Do you have any hearing loss?

 

[shasta0863]

Very interesting to hear others with middle-ear fluttering as well as the more usual kinds of tinnitus. Whilst it's good to hear positive messages about it, it's still very difficult as mine has gone from intermittent to constant over a period of about 4-6 months (hard to know, as I ignored it as just being a bit of wax shifting around to begin with, plus I live under the 'white noise' of powerful fans because of another condition. The problem with the fluttering is that white noise has no effect on the 'buzzing insect stuck in ear' sensation which is horrible.

I'm currently trying various things, diazepam doesn't seem to do much and meds/treatments for clearing the sinuses which do seem to help lessen the intensity if not the frequency (as I also have globus sensation in throat on the same side as buzzing, and somehow the two things feel like they are related sensations)

Hello everyone! This is my first post and I wanted to introduce myself as well as tell my story. Perhaps it can benefit some of the people here who recently came down with tinnitus.

As a dumb teenage kid growing up in the 90's I listened to lots of loud music and definitely did my fair share of hearing damage over that time. It all came to head however when I went to an underground warehouse rave when I was 21 years old and spent 4 hours dancing in front of speakers with friends. When I got out of that place I noticed my hearing was completely muffled. I tried to sleep it off but unlike every other time I had similar muffled hearing my hearing stayed muffle. It did not return to normal for a good 2-3 days and when it did I was left with quite noticeable tinnitus especially in my left ear.

This drastically affected me and made me absolutely miserable and psychologically distressed. It also severely disrupted my sleep. Keep in mind I had also lost my dad suddenly and unexpectedly just 4 months earlier. I searched the internet for days looking for miracle cures but of course there is no cure for tinnitus. I convinced myself that there was no way I would enjoy the rest of my life and that I would be miserable for the rest of my days. I was also incredibly hard and unforgiving on myself for damaging my body and screwing up my life.

So for nearly a year I avoided noisy places like the plague. No bars, no movies, and definitely no dancing. For a young person whose friends were always out doing noisy things it made me quite depressed. Over time I became determined to take my life back so I began going out and doing the things I enjoyed. Sure I was the only person wearing ear plugs in the room but at least I was there. I also bought a white noise machine for my bed and began listening to music at my desk at work (low volume). I began to notice my tinnitus less and less.
In the years that passed I met my wife, fell in love, got married, traveled to some amazing places, and became a dad. When I was 21 and got my tinnitus I thought my life was over and that there would be no enjoyment left to live. Little did I know that best experiences and memories would be coming with that tinnitus running 24/7 in the background.

Over the years my tinnitus has bothered me less and less to where now I virtually never think about it. Now everyone has different levels of tinnitus. I can't compare how bad my tinnitus is compared to others and what constitutes disruptive tinnitus but I can tell you that I can clearly hear my tinnitus over most everyday background noise when I focus on it. Movies, noisy restaurants/bars etc. The important message here is that yes you can teach your brain to ignore it. Does ignore it mean you no longer hear it? Nope I hear it just as loud as ever when I listen for it but I just don't pay attention to it and so I don't hear it where there is no focus on it. So those suffering with tinnitus know that there is hope and please please please stop focusing on it and know that you can teach yourself to consciously ignore it. Your recovery is absolutely dependent on your ability to steer your mind away from it which you can learn to do with a conscious effort.

Now over the years I have developed a bit of hyperacusis and TTTS. I think it came around with my daughter who is quite the loud one and was always crying and shrieking as a baby. Most loud noises don't trigger my hyperacusis but for some reason putting plates away seems to trigger it the worst creating some noticeable TTTS tension with every bump of the plates.

Now last month I noticed an usual thumping in my left ear. Usually come in clusters of 2-6 thumps back to back with about 10-90+ seconds of silence between clusters (sometimes much longer). Episodes of thumping last anywhere from less than 15 minutes (not a full episode) to a full episode being 2.5-5 hours long. Time between episodes is typically 29 hours to about 4-5 days max (rare to go this long with an average recurrence at 2 days). The episodes are all the same with a slow start, a peak of frequent clusters, then a slower taper. This is either middle ear myoclonus or myoclonus of the muscles around the eustachian tube (a form of palatal myoclonus with no movement visible or sensed within the palate). This is quite an annoying and distressing form of tinnitus because it is not only quite loud and powerful (sounds like a microphone being tapped) but also a very noticeable sensation in the ear. I easily recorded it with my phone pressed to my ear. The only saving grace in my case is it isn't 24/7. From what I understand this is an incredibly rare form of objective tinnitus that none of you regular tinnitus sufferers need to worry about ever having it unless you are especially unlucky. In fact the head of surgery at the ENT center I went to had only seen 4 cases over his whole career. Quite frustrating to come down with such a rare form of tinnitus.

I do some medical research as part of my job and I can tell you the literature on middle ear mycolonus is quite thin. Anyway this got quite long. If anyone has any questions feel free to ask

Did any of you find out how to stop this or what caused it? I re-acquired after a long break without it, the vibrating type of rumbling in the ear. It started the day after I lost my grandfather (cried a lot) and exactly right after using new earplugs that seemed to have bothered the ear. Been almost 24/7 since. It fluctuates like a pulse to sometimes very intense vibrating tone that's continuous until it calms down. Driving aggravates it or using plugs or muffs.

I recently had surgery to cut both the stapedius and tympani muscles in one ear. Although I probably just had stapedial myoclonus, I think the doctor wanted to avoid having to redo the operation. I should note that my doctor is very conservative, and wouldn't have done the surgery, if he thought that there were any significant risk. He was also a highly rated ear surgeon, so I had a lot of trust in him.

Although I did have the classic fluttering and rumbling sounds, my main symptom was a low frequent buzzing sound. In a quiet environment, the buzzing would start, and would not stop unless there was significant external sound. Lying down also triggered the buzzing. I've read that other people have noticed this. Medications were of no help for me. One doctor thought that I didn't have myoclonus, because I told him that the buzzing would go on for hours (and during the whole time that I was sleeping). He thought that I had simple tinnitus. But given that it could be stopped by external noise, and that it was very low frequency, I knew that he was wrong. Given the few accounts of this condition in the medical literature, I think that symptoms can vary greatly between patients.

The doctor that did the surgery, initially also thought that I just had tinnitus. But using the medical literature, I managed to convince him otherwise. But I did wait over a year after first meeting with him, before I decided that I wanted the surgery. When I met with him again, I told him I had tried everything, and that I was at my wit's end. I don't know if that helped him to decide to go ahead with the surgery or not.

The surgery went very well. The packing in the ear is annoying, but not as bad as I expected. The clicking noise was no longer present. But the buzzing noise was still intermittently occurring, the same day of the surgery. I had read that some people are only partially helped by the surgery, so I assumed I was one of those people. But when I went back to work, the buzzing noise got worse enough, that I decided to take klonopin. In the past, this had basically not been effective. But to my amazement, it now actually stopped the buzzing!

The only initial side effect that occurred soon after the surgery, was that I developed pulsatile tinnitus, while I still had the packing in. I eventually realized that if I relaxed my jaw, that this symptom would stop. After the packing was taken out a week later, that symptom totally went away.

After the packing was taken out, initially the hearing in that ear did sound strange. But my doctor said that I had fluid in the middle ear, which would eventually go away. It took a good week before that symptom subsided.

I am still taking the klonopin. I might eventually try to reduce or stop it. But given that my symptoms are significantly reduced, I'm going to stay with what is working, and hope that my symptoms don't return.

I hope this is of help to someone! Good luck with anyone who is suffering from similar problems. - Mark

What did your vibration type sound like? I've recently re-acquired this issue and it never was almost 24/7 and now it is. Mine is like a 40-50hz type of low bass vibration that pulsates and when it gets bad, becomes more of a continuous loud viberating with no breaks until it calms down.

Came back the morning after my grandfather passed and then fully set in after trying new earplugs in the morning in the ear. Puled the plug out and it was vibrating like crazy and has been almost 24/7 since.

 

[ZZZK]

The only muscle capable of vibrating that quickly in the ear is the tiny stapedius muscle. The tensor tympani cannot move that fast and my middle ear myoclonus is just a slow thump on and off. I have had the stapedius go off before and create a higher frequency rumble like you are describing but it only happened to me once and was very brief.

I have been getting random thumps now and then but I *knock on wood* still haven't had any episodes return.

Stress definitely seems to aggravate this condition.

Did any of you find out how to stop this or what caused it? I re-acquired after a long break without it, the vibrating type of rumbling in the ear. It started the day after I lost my grandfather (cried a lot) and exactly right after using new earplugs that seemed to have bothered the ear. Been almost 24/7 since. It fluctuates like a pulse to sometimes very intense vibrating tone that's continuous until it calms down. Driving aggravates it or using plugs or muffs.



What did your vibration type sound like? I've recently re-acquired this issue and it never was almost 24/7 and now it is. Mine is like a 40-50hz type of low bass vibration that pulsates and when it gets bad, becomes more of a continuous loud viberating with no breaks until it calms down.

Came back the morning after my grandfather passed and then fully set in after trying new earplugs in the morning in the ear. Puled the plug out and it was vibrating like crazy and has been almost 24/7 since.

 

[shasta0863]

The only muscle capable of vibrating that quickly in the ear is the tiny stapedius muscle. The tensor tympani cannot move that fast and my middle ear myoclonus is just a slow thump on and off. I have had the stapedius go off before and create a higher frequency rumble like you are describing but it only happened to me once and was very brief.

I have been getting random thumps now and then but I *knock on wood* still haven't had any episodes return.

Stress definitely seems to aggravate this condition.

Problem is, I don't know what constitutes quickly or not. In it's normal state it's just akin to perhaps your pulse at 60 beats per minute, maybe a little less. Vroom, slight pause, vroom, slight pause. It's not high frequency at all, it's about 40hz perhaps, very low. But then again, I referenced that this sensation can get aggravated and become a more continuous vibrating tone without a break until it calms down. So perhaps that is then moving too quickly?

I also get a reverberating of sound that seems to make it echo more if that makes sense. Like I can pick up low frequency sounds and they seem to like resonate more in the ear which causes more stress. Even my heartbeat if it gets too elevated sometimes it mixes in with the vibration and creates like a echo like reaction with the viberation. If I tap my cheek with my finger as well, it like reverberates the low frequency type echo into the ear.

What's strange to me is that I remember this condition, quite less though, years ago. Came upon random one night, thought I heard a pop and woke up and it was viberating. Lasted on and off for a few months, never staying almost 24/7, usually triggered if I drove that car (which it makes worse now too) or woke up. But calmed down within a couple minutes.

How exactly my grandfather dying the day before, and then awaking too it briefly, then for it to clear up after a few minutes and then instantly return after using Decibulz earplugs and molding it to my ear (which once I took it out, the ear was viberating so intensely I could barely take it) and taking it out and hearing it. Been here since with ups and downs. Briefly going away, or at least so faint I can barely notice it perhaps, sometimes in early AM.

Oddly enough I have noticed as well muscle spasms around my body briefly in random areas since this ear issue started and occasionally have heard a CLICK, CLICK in both ears. But not often.

I'm so floored over this I can't even believe it.

 

[ZZZK]

Shasta don't despair. I know it's awful and plenty of us on this forum have been through the same thing. When my MEM was very active I was also getting random spasms all over especially my upper eyelids. This disorder seems to be related to some other kinds of essential tremor. Avoid caffeine and other stimulates especially alcohol. They definitely seem to aggravate things. Sticking things in your ears might cause a reflex reaction that triggers the spasms. Is this just one ear or both?

 

[shasta0863]

Shasta don't despair. I know it's awful and plenty of us on this forum have been through the same thing. When my MEM was very active I was also getting random spasms all over especially my upper eyelids. This disorder seems to be related to some other kinds of essential tremor. Avoid caffeine and other stimulates especially alcohol. They definitely seem to aggravate things. Sticking things in your ears might cause a reflex reaction that triggers the spasms. Is this just one ear or both?

One ear. Though since this issue started again I've noticed the left ear occasionally gets a quick jolt like spasm. Completely different feeling, as I believe it is the eardrum quickly shaking for a brief second as the feeling is very, very close to the outer ear, unlike the right ear vibration which feels more muddy in the vibration sound and further away if that makes sense. But I tend to think the manipulation of the ear I was doing, pulling earlobe out, trying to force open tubes ect., probably played more of a role in the good ear.

I'm trying hard to not despair. I wen't through the worst years of my life with T/H ups and downs. I thought that was the worse, this truly takes the cake and my sanity is broken. I've become severely depressed, more so than before with T/H. The feeling of it and sound is so jarring I can't sleep. I'm in fear daily over it as weeks become a month, then almost 2 months. I've become more angry, bitter and sadly have gone into fits of rage and have hardly brushed my ear with my palms a few times which did a lot more harm than good. Stupid self inflecting things that make no sense that I do in complete desperation of peace and exhaustion.

I agree the perhaps the reflex reaction is occurring from it. Oddly enough at the doctors, when they used the ear scope in my ear for awhile it didn't cause any issues and didn't seem present.

Driving the car takes the condition to a 10/10 in vibration intensity which I don't understand. But it all has to tie into this low frequency sensitivity I seem to have now with this issue, like I did many years ago when it was in a very brief on and off state. Picking up cars in distant and hearing that rumble in my ear, makes me question whether the ear vibrated or I was just hearing the low frequency of the car, or maybe both at the same time. The external sound sometimes reverberates into the ear making a type of echo like vibration noise combined with the vibration. Hard to describe.

But this oddity with low frequency I scratch my head at, because supposedly 6 months ago my ENT said I was having an ETD issue. I didn't have vibration at the time, but one of the symptoms I noticed was I was heard low frequency sounds much more intensely. I couldn't even stand in a store because the generator hum for the cold sections was so loud in the ear reverberating I thought I was going to be sick. Now, that's different from what I have now, but the low frequency 20-60hz similarity is very odd to me, and I wonder if there is some connection. I hoped it was ETD, but I wen't on antihistamines, used flonase, even a decongestant (the need an I.D stuff) for a few weeks with no results. And ETD for me usually gets better on it's own anyways, which this condition I'm suffering is not.

I'm also suffering from a minor cold right now too on top of it, which hasn't helped as it's given me a running nose and ear fullness. No impact on the vibration from what I've seen. Strangely, I wen't to the doctor today for blood results, he looked into my ear, I didn't feel the vibration and wen't home. I heard the vibration after car stopped, it settled down and I was the out all day today (which I've been basically home ridden since this started). Some walking around and more car travel than usual. Haven't slept in 24h either. And the vibration is almost non-existent. It's like some weird combo of things has strained it to the point it can't vibrate or something.

Then again, this might just be a fluke. I've had a handful of days where I might get a little peace for it to only return in full force hours later, so I'm sure once I lay down it will rev up again, and especially once I fall asleep and wake. I'm dreading it.

 

[ZZZK]

Shashta I went through similar terror with my MEM. Please dont dispair and it doesnt help to fixate on it. Try to live ur life as normal as possible.

I have done massive amounts of research on the subject of MEM and read hust about every paper. In most cases it gets better on its own, but that can take months. 4-6 months seems common but I have seen some that were closer to a year.

If this rumble is your stapedius, surgery is generally very effective, but I would only do this as a last resort.

Try to keep notes of what aggrevates this and what makes it better.

Do you feel a physical sensation as well?

 

[shasta0863]

Shashta I went through similar terror with my MEM. Please dont dispair and it doesnt help to fixate on it. Try to live ur life as normal as possible.

I have done massive amounts of research on the subject of MEM and read hust about every paper. In most cases it gets better on its own, but that can take months. 4-6 months seems common but I have seen some that were closer to a year.

If this rumble is your stapedius, surgery is generally very effective, but I would only do this as a last resort.

Try to keep notes of what aggrevates this and what makes it better.

Do you feel a physical sensation as well?

Yes, feel it and hear it. Nothing helps it from what I've seen, I can only make it worse by getting emotionally upset, wearing earplug in that ear (with has never been an issue) or earmuffs even, rubbing the ear too much ect.,

Oddly, since I've just come down with a bad cold and/or maybe light flu, it has ceased. Ears have pressure, runny nose, coughing up phlegm, slight sore throat all the works. It peaked last night which is when I stopped noticing it. I actually woke up today without it. I've never woken up without outside 1-2 times in almost 2 months.

So I'm very scared once I clear up it will come back. I'd rather be sick than go back to what I had. I don't know why getting sick has affected it but I just have to pray it can remain so.

 

[shasta0863]

Shashta I went through similar terror with my MEM. Please dont dispair and it doesnt help to fixate on it. Try to live ur life as normal as possible.

I have done massive amounts of research on the subject of MEM and read hust about every paper. In most cases it gets better on its own, but that can take months. 4-6 months seems common but I have seen some that were closer to a year.

If this rumble is your stapedius, surgery is generally very effective, but I would only do this as a last resort.

Try to keep notes of what aggrevates this and what makes it better.

Do you feel a physical sensation as well?

Well it just came back. Feeling better from being sick and like i thought nownits back.

Cant believe it. I felt like myself avain yesterdsy even being very sick. The fact it just stsrted agaon means im really broken. I cant believe it came back.

 

[sakrt]

If this rumble is your stapedius, surgery is generally very effective, but I would only do this as a last resort.

@ZZZK: What would be the tests and imaging be, to find out before resorting to surgery? Thx.

 

[shasta0863]

@ZZZK When you have a second, could you tell me if anything I mentioned above makes any sense in terms of the sickness. Did you ever have the same thing occur? Does this say anything about being mem or mem like?

 

[Greg Sacramento]

s, feel it and hear it. Nothing helps it from what I've seen, I can only make it worse by getting emotionally upset, wearing earplug in that ear (with has never been an issue) or earmuffs even, rubbing the ear too much ect.,

Oddly, since I've just come down with a bad cold and/or maybe light flu, it has ceased. Ears have pressure, runny nose, coughing up phlegm, slight sore throat all the works. It peaked last night which is when I stopped noticing it. I actually woke up today without it. I've never woken up without outside 1-2 times in almost 2 months.

So I'm very scared once I clear up it will come back. I'd rather be sick than go back to what I had. I don't know why getting sick has affected it but I just have to pray it can remain so.

With me, I had the same issues with per your description above and all that you mentioned in other posts. I research all of this and what I though occurred the first day it happened and why it came back months later. I had posted all of this with supporting research links. I then had blood work and a duper ultrasound of neck veins, arteries and thyroid of neck. The radiologist and doctors confirmed what I though was taking place.

My internal jugular is the main blood pumping source of problem causing vibration or a hum and it's reaction to my thyroid causes my left ear to thump. It will flutter when being hypertense. I was placed on a thyroid blood flow med and now my thyroid is starting to function as normal and I hope to be able to end this med soon.

 

[shasta0863]

With me, I had the same issues with per your description above and all that you mentioned in other posts. I research all of this and what I though occurred the first day it happened and why it came back months later. I had posted all of this with supporting research links. I then had blood work and a duper ultrasound of neck veins, arteries and thyroid of neck. The radiologist and doctors confirmed what I though was taking place.

My internal jugular is the main blood pumping source of problem causing vibration or a hum and it's reaction to my thyroid causes my left ear to thump. It will flutter when being hypertense. I was placed on a thyroid blood flow med and now my thyroid is starting to function as normal and I hope to be able to end this med soon.

Wish mine was the same. No thyroid issue per blood test. Strange to me that so many can have a like similar symptom with no common underlying cause. Like anxiety giving symptoms like other medical conditions.

Hopefully this place can test like you, the neck and arteries area. If all is clear that at least rules things out.

Curious though Greg, I don't describe mine as a thump but I've heard a thump like quick spasming of my left eardrum before. It sounds close to the outer ear, while my actual issue in the other ear, sounds like it's further in, and thus farther away feeling.

Was yours more closer like the eardrum itself spasm, or did it feel further or deeper inside?

Also, has the thyroid corrective measures shown any results in the ear? Any differences?

 

[Greg Sacramento]

My advanced thyroid blood tests were normal. It was a series of specialized ultrasounds carefully watching blood flow pulse patterns with also direction to brain and ears. My thump comes and goes, but my vibrations also react to electrical noises.

 

[shasta0863]

My advanced thyroid blood tests were normal. It was a series of specialized ultrasounds carefully watching blood flow pulse patterns with also direction to brain and ears. My thump comes and goes, but my vibrations also react to electrical noises.

Wow, normal tests

My advanced thyroid blood tests were normal. It was a series of specialized ultrasounds carefully watching blood flow pulse patterns with also direction to brain and ears. My thump comes and goes, but my vibrations also react to electrical noises.

That's terrifying, so even if the thyroid blood test is good there can still be a problem? I didn't even have advanced tet, just normal TSH on the blood work.

Do you have to have high BP as well as a sign? My BP is usually normal to below average outside of getting emotionally worked up.

Has yours ever become more of a continuous long lasting issue, instead of coming for awhile, then stopping for awhile? Are you able to trigger a worsening of it? Or does it always remain the same intensity and sound? Like I mentioned mine can drastically change at random, or made worse (continuous vibration, more intense feeling) after driving, using earplugs, sleeping on the bad ear.

I'm starting to think there must be a lot of different causes from similar type issues in the ear. Another person said there's all sort of outside issues, like yours, that are problem not the ear itself. The trig nerve and muscles surrounding all this can be problems causing the ear issue.

I hope it's not MEM because there seems to be little to no help for it and I can't chance surgery with no guarantee's.

Did you see someone that was able to diagnose you and helped you through this? Or did you ask for all these things and diagnose your self through them? I'd really like to find someone who knows the ear, head and can think outside the box to help me.

 

[Greg Sacramento]

My BP is usually normal to below average outside of getting emotionally worked up. I also have a jaw problem. I can't use ear plugs or headphones as not only do I experience this more when wearing, but afterwards too. My hum or vibrations - whatever, is more continuous now. It's made worse by sleeping on back ear and after riding in a car. It appears that sounds produced by a motor or a fan also has influence. My vibrations is caused from internal jugular vein which is noted by research studies as always being as least part of the cause per flow and moments of being hypertense. Thumping usually also has thyroid input. The vertebral artery, other veins and arteries, hearing nerve- VIII of neck and heart can also give input as well as input from the jaw.

A little more information that I had previously posted. I had a neck injury from hyperextension of neck from a sitting back position placing pressure compression on arteries and veins. Stroke can also be caused from sleeping in a chair and head being moved around. My same problems can also be caused by lifting or forward head posture with twisting neck. A X Ray of neck is also a test that's needed.

 

[shasta0863]

My BP is usually normal to below average outside of getting emotionally worked up. I also have a jaw problem. I can't use ear plugs or headphones as not only do I experience this more when wearing, but afterwards too. My hum or vibrations - whatever, is more continuous now. It's made worse by sleeping on back ear and after riding in a car. It appears that sounds produced by a motor or a fan also has influence. My vibrations is caused from internal jugular vein which is noted by research studies as always being as least part of the cause per flow and moments of being hypertense. Thumping usually also has thyroid input. The vertebral artery, other veins and arteries, hearing nerve- VIII of neck and heart can also give input as well as input from the jaw.

A little more information that I had previously posted. I had a neck injury from hyperextension of neck from a sitting back position placing pressure compression on arteries and veins. Stroke can also be caused from sleeping in a chair and head being moved around. My same problems can also be caused by lifting or forward head posture with twisting neck. A X Ray of neck is also a test that's needed.

Thanks for the update. Very strange how similar in some aspects we are. I've read a lot of people who have had similar symptoms on a more temporary scale, lasting minutes or hours, then going away, coming back much later ect., but all have different stories and issues.

What actually changes when it gets more intense for you? Does it sound louder and feel more intense too?

How long have you been on the medication? Is there an expected period of use before seeing results? What course is there to take if meds don't work?

 

[shasta0863]

My BP is usually normal to below average outside of getting emotionally worked up. I also have a jaw problem. I can't use ear plugs or headphones as not only do I experience this more when wearing, but afterwards too. My hum or vibrations - whatever, is more continuous now. It's made worse by sleeping on back ear and after riding in a car. It appears that sounds produced by a motor or a fan also has influence. My vibrations is caused from internal jugular vein which is noted by research studies as always being as least part of the cause per flow and moments of being hypertense. Thumping usually also has thyroid input. The vertebral artery, other veins and arteries, hearing nerve- VIII of neck and heart can also give input as well as input from the jaw.

A little more information that I had previously posted. I had a neck injury from hyperextension of neck from a sitting back position placing pressure compression on arteries and veins. Stroke can also be caused from sleeping in a chair and head being moved around. My same problems can also be caused by lifting or forward head posture with twisting neck. A X Ray of neck is also a test that's needed.

@Greg Sacramento

Devastating news for my morale from the so-called neuro-otologists who are best of the best in my part of the state.

She said it's just "tinnitus", and brain sourced in nature. She said irregardless of cause, noise or medicine, it's a central brain issue. What!?And that the vibrating sensation when it gets intense is in fact possible too. I cannot accept it. So I just suddenly re-acquired a more rare tinnitus of lower frequency that makes a vibrating type sound at 60hz on top of my high pitch T? I asked her why it would pop up in 2015 for no reason, and be only intermittent with certain triggers. Then come back briefly for one day in 2018 after I had a ETD issue, and then nothing again until May of this year. She said, tinnitus can just come and go for no reason. Like well sure, tinnitus can come and go, but low frequency noise induced tinnitus or medically low freq. is often very rare and my normal T is always been higher pitch with only a very mild low drone in back when it's super quiet. Nothing like this where I can feel it when it gets aggravated and a vibrating very low hum pulse type.

She believes the fact I pick up low. freq. sounds more in the ear when it's quiet means there's some excitability or something and this is all T and Hyperacusis related. I said I didn't get pain in my ears other than from ETD issues, and that this slight soreness in ear from this vibration was not around before. I had loud noise exposures and all sorts of things, so why wouldn't I've got pain before then? My H for years has always been just noises seems a lot louder and higher freq. noises being more bothersome to the ear. Rarely over years did I ever have a slight soreness from a noise, and that was temporary and what I believe was just the inner ear muscles tensing very tightly from the noise/startle.

She said my sound was not at all muscle related. She said there's no vibrating hum/pulsing type sound from any of the muscles and that she see's patients with this before, that it's a click or thump! Wouldn't even consider this likely she was so sure I was just T.

If I believe what she says, I'm screwed. That means I'm fucked. It doesn't add up with my issues and what she is saying. I just have low freq. T that is so low and intense, and can go up in intensity, and down, and this is just T of the brain?

Wants me on nortriptyline and low salt diet, updated hearing test and ABR test.

 

[shasta0863]

@ZZZK I got an update today, read above any thoughts?

She adamantly said the stapedius doesn't create this sound I have. Says it is in fact T just lower frequency! Can't bare to believe that. So 2015 I have so-called T she says is in the brain, intermittent, stops for years (occasional perhaps throughout) get it back in November 2018 briefly when I had a bad ETD issue, then suddenly comes back in May right after gran dad dies and using new earplugs that I felt hurt my ear a bit and created a odd pulling pressure.

Yet she says oh, the pain is H, yet no H pain through the years with loud noises outside! I'm terrified this is supposedly a new just regular T tone. LOW frequency that viberates. Are you kidding. It's over if she's right. I refuse to believe it.

 

[Greg Sacramento]

@shasta0863 She has mostly indicated what I had said. I don't think that tinnitus just comes and goes and repeats very often, but it has seem to me that you do have some tinnitus, hyperacusis and hearing loss as having a high pitch. When tinnitus develops and stress is present, hypertension can trigger PT. A thump is either caused from issues - nodules and she is correct, not muscles of neck, and wrong because ear muscles pick up on PT blood flow problem. It's also always more in one ear. A hum is caused from artery or vein blood flow vein and artery involvement, including injury, hypertension with hypertension of neck from a sitting or standing position. All studies agree with this.

just suddenly re-acquired a more rare tinnitus of lower frequency that makes a vibrating type sound at 60hz on top of my high pitch T?

This can happen. I would take her advice and get your hearing checked. I would still discuss an ultrasound of neck and vein arteries. If there's a problem then blood flow meds may help. Hypertension and getting upset needs to be controlled.

 

[shasta0863]

@shasta0863 She has mostly indicated what I had said. I don't think that tinnitus just comes and goes and repeats very often, but it has seem to me that you do have some tinnitus, hyperacusis and hearing loss as having a high pitch. When tinnitus develops and stress is present, hypertension can trigger PT. A thump is either caused from issues - nodules and she is correct, not muscles of neck, and wrong because ear muscles pick up on PT blood flow problem. It's also always more in one ear. A hum is caused from artery or vein blood flow vein and artery involvement, including injury, hypertension with hypertension of neck from a sitting or standing position. All studies agree with this.




This can happen. I would take her advice and get your hearing checked. I would still discuss an ultrasound of neck and vein arteries. If there's a problem then blood flow meds may help. Hypertension and getting upset needs to be controlled.

Yes, but my normal noise induced T and sensitivity to noises was from noise, and never fluctuates like this. She's claiming ETD is impossible, vein or artery issues in neck/head impossible as I'm too young. Can a HUM feel like it's low frequency like 60hz? Can it sound like a vibrating type, large truck outside your home idling sound? That you can feel too? That changes in intensity to almost not there, to REALLY there?

She is stating it's just tinnitus and in the brain. Which is outrageous. I wouldn't have this and feel it in 2015 very off and on only triggered by certain actions, then it go away. Then get it years later and this is BRAIN tinnitus like my noise induced. There's no way.

She says only thumping and click is associated with TTTS/MEM.

I believe there is some relation to this condition and the off and on chronic right ear issues I've head with pressure and ETD for years. I routinely will get that tuning fork test and it will show the right ear screwed up. Sometimes it's not. Last time I got it, a month ago, it was showing it was messed up.

The fact in November of 2018 when I had ETD issues bad, got a really full ear, a weird uuuuuuu high pitch tone that was a overlay over all noises or even if I touched the ear it would create it, and I heard the low frequency machines used to keep things cold (usually you barely audibly hear it) was like 100db in my ear. It resonated in the ear and filled it with the sound/vibration.

Isn't it strange that my issue now is low vibration and I can pick up low vibrating noises more in the ear when it's flared up.

Has to be similar connection and more in the ear going on then her it's just tinnitus and cochlea related.

 

[Greg Sacramento]

normal noise induced T and sensitivity to noises was from noise,

Yes, I said that you have some regular T.

She says only thumping and click is associated with TTTS/MEM.

True with thumping, but clicks can be joint rubbing. Ear fluttering can sound like clicks.

ETD is impossible, vein or artery issues in neck/head impossible as I'm too young.

Physical problems could be a trigger to PT hypertension or regular T - or both.

Vein and arteries association to hypertension and/or injury can happen when younger and in the thirties.

Many professional article studies older than three years per PT have been updated. They note that cause of PT, hums, thumbing was incomplete in the past. Many copy cat sites are still using old data. Your doctor's knowledge many not be completely updated.

 

[shasta0863]

Yes, I said that you have some regular T.


True with thumping, but clicks can be joint rubbing. Ear fluttering can sound like clicks.


Physical problems could be a trigger to PT hypertension or regular T - or both.

Vein and arteries association to hypertension and/or injury can happen when younger and in the thirties.

Many professional article studies older than three years per PT have been updated. They note that cause of PT, hums, thumbing was incomplete in the past. Many copy cat sites are still using old data. Your doctor's knowledge many not be completely updated.

Saw my ENT today and she spent some time going over this issue with me. I saw her before this issue started.

There's a clear issue from the tympanometry test on my right ear. It's worse than the one I had in April.

She can't say for certain why I hear/feel what I do, or why certain things trigger it and others don't, but she says I still have untreated chronic sinusitis and Eustacian tube issues, and probably have for years and that this could be the cause. She believes since over the years I've routinely had bouts of ear pressure and sometimes pain, tuning fork showing problems in the right ear off and on through the years, new temporary T symptoms during these bad pressure/pain times, like the event I had in 2018, November with sudden ear pressure, pain and the now knowing, temp T that jumped up from stimulus (noise or touch) with noticing the following week the viberating type buzz off and on from 2015 at the time; combined with the fact I was picking up lower frequency sounds way more intensely at that time and it resonating very loudly in the ear, that this could be likely all interrelated to real issues of the chronic sinusitis and Eustacian tubes.

She see's thousands of people though, and see's ETD and Sinusitus and people do not describe to her what I feel, so that concerns me. She still thinks it's too soon to suggest this is an auditory damage type of thing.

My only concern is why then didn't I get this vibrating buzz problem all those times when I had bad ETD issues from this sinusitis. Only in 2015 on a random day that lasted off and on over 6 months and got less and less during that time, during the November 2018 event, and then very bad now event May of 2019-July 2019. Unless I did have it off and on and don't recall all these in-between years which is possible.

Can it be related that the day before I re-got this issue in May, my grandfather died and I cried all day with my dad? Haven't been that upset and cried in I don't know how long. Loads of blowing nose and congestion I'm sure. Did all that create a perfect storm of problems in the ear? If I had pressure issues and inflammation and the like in that ear, could the earplug that I was continuously pushing inwards to mold the outer canal have created a negative pressure on those middle ear bones and hurt it or even the auditory nerves? Makes me scared to think the latter as that would mean no fix. But it can't be coincidence the earplugs triggered it and even now brief use for 15 seconds, I take it out it slowly ramps up until it calms down shortly after.

The MAIN problem is, she wants me to fix this underlying issue first and take Azithromycin & Singulair. I'm scared of course antibotics will make my noise induced T worse (which they routinely do for people on this website), which I've suffered so much over the years to finally get to a reasonable place. I'd hate to make that worse while trying to fix this Viberating buzz, which may not be even relevant to the Sinusitis and ETD problems.

I haven't been on antibiotics in over 10-11 years. I have a tough choice ahead.

 

[Greg Sacramento]

Loads of blowing nose and congestion I'm sure. Did all that create a perfect storm of problems in the ear?

It may be so.

Your auditory and ear plug situation should be left in the hands of your ENT.

Azithromycin & Singulair.

Azithromycin isn't the worse 'cin' and it's comparable to most other antibiotics and meds as being under 1%. With having T, it may be more and as to how much is unknown. Singulair is on the low side with tinnitus reports - under one half of one percent. Everyone is different.

Let me know how the treatment goes.

 

[shasta0863]

It may be so.

Your auditory and ear plug situation should be left in the hands of your ENT.


Azithromycin isn't the worse 'cin' and it's comparable to most other antibiotics and meds as being under 1%. With having T, it may be more and as to how much is unknown. Singulair is on the low side with tinnitus reports - under one half of one percent. Everyone is different.

Let me know how the treatment goes.

Wanted to add a symptom I forgot to mention as I didn't think of it.

But if I tap my cheekbone or near next to the ear canal near the flap, or if I'm in a quiet area and use my palm to tap the wall and create a low sound, it like resonates in the ear and I feel this tightening sound of something. It doesn't sound like the vibration, but like something is constricting due to the sound.


Still debating in terms of taking those pills, but I have to start something, the fear of my old T getting worse is keeping me back. But I know the tympanometry in the ear with the vibration was shown to be bad. Clearly have some type of red lining or inflammation.

My concern is how quick they just throw out antibiotics as the first thing for Sinusitis of the ETD.

I wonder if I should of used antihistamine and flonase combo longer than 2 weeks. I stopped after the vibration had no improvement and I thought it was affecting T a little.