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

@Greg Sacramento I've determined that listening to music with bass even low is causing the vibrating pulsing hum to exacerbate to a 10/10, continuous sound/feeling.

I believe that is why driving the car affects the ear once I turn it off. It's the vibration the car is producing radiating into my body.

Does this at all make sense? Could this be a cochlear damage/auditory damage issue instead?


Also,

Last night my other ear without the vibration started to have spasms of what felt like the eardrum. Was a fast, intense spasm sound that felt very close to the outer ear and was loud. Nothing like the deep, pulsating viberating buzz/hum I have on the other side.

It started with 1 spasm every 15-30 seconds, then 3-4 quick spasms in succession, and did this every 30 seconds, to a minute, for 3-4 hours.

This issue I've had 3-4 times occasionally since my original issue in May with the vibrating tone in the other ear. Do you think there's a connection? Is it possible the Decibulz earplugs I used could of damaged my ears in a way through the negative pressure of sealing the ear canal and pushing constantly the mold into the ear?

I also started to have random split second muscle spasms across my body as well that started just after this issue started in May if you recall. Is there some possible connection here between this outside of the typical TTS/MEM?

 

@Greg Sacramento

Hi greg, which portion were you agreeing too? Do you mind theorizing on the first portion?

Thank you.

 

This and all of what you said. Vibrations or other hum sounds such as a computer hum can temporary increase a hum as well as a vibration source such as a car. Cochlear damage/auditory damage is often present with a hum, but not always - even moderately with other PT head sounds.

ETD, thyroid, a twisted vein/artery, narrowed vein and hypertension also may have involvement. Most hums develop or spike due to a change from normal blood pressure.

Researchers have emailed me and said as you have - a perfect storm develops. Any of the above with combination usually is sitting in waiting, but there's is always a change in blood pressure per hyperextension and twisting neck with a hyperactive moment that causes development of a hum.

A thump can include all of the above, but a vein/artery with possible association to the thyroid usually also has involvement.

 

I have constant humming like a refrigerator engine running all the time.. I can physically feel it when I put my palms over the ears. It is 24x7, companied by static electic buzzy sound. Do you think it is from vein blood flow? is it TTTS? it isn't clicking so it may not be TTTS. would appreciate to know what you think?

 

Mark who was your surgeon? Did you exhibit a type of rumbling vroom, slight pause, vroom sound in the ear. Like a low, 50-60hz tone similar to that of a bass in car outside your home going off? I believe I triggered some type of issue I thought was in permanent remission by the severe stress/sadness and crying/hard blowing of nose all day, combined with the earplugs the following day I used that I believe because it molded to the outer ear I created negative pressure in my ear that was perhaps already hurt/inflamed.

I then re-acquired my vibrating type hum/buzz and can make it worse by listening to any music briefly with low bass, sleeping, coming back from a drive or sticking my finger in the ear canal and/or earplugs now, will skyrocket the sound/vibrating sensation until it calms back down.

Did you exhibit something similar? I'd love to hear who you saw for this.

 

Thanks Greg. Since I didn't acquire any "noise trauma" I'm not sure what to think. If my ears were already a bit inflamed with ETD issues that I seem to go through a lot over the years, is it possible the negative pressure I created by pushing in constantly while the mold of the earplug covered the entire outer ear could hurt the auditory nerves or cochlea? Or even a bone, is that possible from what I did? I didn't feel any huge pain at the time, I felt slight uncomfortable outer ear pain for a second from the plug inside the canal I think rubbing to much on the inner canal, but outside that, not much.

Seems very strange that I could of caused a "trauma" through this method. And if it was cochlear/auditory damage why the heck would I be able to stop it with talking, hearing noise, humming and so forth.

Do you think that indicates more something mechanical in nature? Does the blood rushing whooshing sound everyone hears at one point, being way more frequent and longer indicate more vasscular in nature. Can't be a coincidence that this began right after the vibrating hum started. There seems to be a connection to many things.


Also do you mind telling me where you gathered most of your research and the papers on issues such as vibrating and pulsating issues/feeling? I'd like to collect scientific data to provide to the Doctors who are not listening to me.

 

@Greg Sacramento Could you reply on the above when you get the chance, especially on where you found most of your research on this topic?

I'm wonder if this isn't an "auditory damage" issue, nor one of the three muscles spamming issue, is there any other mechanism in the ear that could cause this? I think there is something very important about why sticking my finger in the ear and closing the canal, wearing an earplug for even 15 seconds then taking it out, or laying on the ear itself at night, have some sort if important role on what exactly it's aggravating in the ear.

It would seem to me that all 3 of these actions inhibit a pressure change in the ear, which I'm not sure what that would be affecting. Could that be irritating an already perhaps damaged bone or other issue.

I think that the slight pain I've had off and on is indicating some type of bruise or problem, as in 2015 it was present at the start, and now.

 

@shasta0863 I have posted links to you and within PT subject threads. I also read tons of case studies from medical journal that I don't save. Without specified testing, I don't have much more to say per our many discussions. Have you done the pulse and movements exams including ear and turning neck - that I posted.

The ears cause or effect? In my opinion it's effect.

Here is another read and it's not medically difficult to understand. This one discusses other veins and arteries besides the well known cause internal jugular vein. Any of these veins and arteries can associate to so many PT functions.

The vertebral arteries arise from the subclavian artery, runs through the transverse foramen, then enters the cranium to form the basilar artery. The basilar artery supplies the cerebellum. The vertebral supplies the ear via the labyrinthine arteries. The labyrinthine arteries carry a small yet crucial blood supply to the inner ear, and it has been documented that the inner ear is very sensitive to ischemia (Nuttall 1999b; Wangemann 2002b).


https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/

 

@Greg Sacramento Thanks for the reply. Are you referring to the pic with the veins? I checked that but I struggled to see anything. Not sure I have the lighting or perhaps eyesight to tell if there's something out of the ordinary, but not anything bulging out.

What was the movement exam, I think I may have missed that?

The fact that low vibrating noise can trigger it to ramp up indicate it NOT being a jugular, vein or similar issue? I've been able to ramp up the viberating hum simply by listening to music with some bass in the car for 10-15 seconds. After turning it off, it will ramp up after about 10 seconds. Also anything in the ear, like my finger briefly also does this. Does this suggest it could be not related to arteries ect,?

I've also been having a complete destruction of my normal Tinnitus which has caused severe mental problems for me. I don't even recognize some of the pitches as they're so much more higher pitched. I think my normal T has progressively been getting worse since May. Especially in the vibrating ear. The reactive type T is bad, or H, what ever causes the tone to act erratic spiking up and down, and noises in background will aggravate it and cause it to compete (actually raise in volume). So A.C running, faucet in distance ect., The fact the normal T in both ears is suffering too really makes me concern I'm facing a complete auditory collapse.

In the last 2 months I had a bell run at a store near my ear, which shouldn't of caused damage, and some firework outside that maybe came in around the 90db rage. Stuff that didn't cause any noticeable increase right after.

My left ear also is getting occasionally strong thumps in the ear where the eardrum violenty spasms 1-3 times every 10-30 seconds. Thankfully I haven't had this in a week. But I notice a slight thump occasionally at random like it's just waiting to strike.

And outside that, my left jaw has also started having a sort of tearing tmj sound that I've never had (only on the right side). So it seems like I'm having a full collapse everywhere and I'm severely freighted as I fight with doctors to get tests I recommend.


Right now I'm in the process of getting:

CT of upper head
Ultrasound of neck/ear area that you recommended
MRA (recently found out about this, supposed to be a lot better for blood vessels I think)

 

@shasta0863 I'm sorry that this is happening to you. I have the same rare stuff going on as you, including your auditory mentions. I also have other physical problems that developed from rare happening physical injuries. For myself, I was able to connect the dots and then X rays and other radiological exams confirmed.

For myself, there are meds for my conditions that would help the tones, vibrating and thumping, but I turned out to be the one in a hundred where it make my tinnitus worse.

Hopefully your tests will tell 'cause to effect' and treatments can be given.

I may stop most keyboard use as bending my head forward for any length of time isn't helping me. My wife and self also plan to spend some time for social and medical donation. This will make us happy to help those in need. My wife's son from a first marriage is a very successful professional sports player with endorsements and he doesn't need any money.

 

@Greg Sacramento

Hope you get better in time as well, you're definitely a better fighter than I am. Having these issues start in my early 20's and and worsening/more issues in late 20's really has taken away a life I'll never experience now. Trying to stay positive. Having limited income and fighting for tests has been exhausting.

Had a question on your ultrasound of the neck. Although the frequency range is high enough that we don't hear,there are secondary vibrations that occur from it that register over 100db from some medical articles I've read. They're older but I'm definitely concerned. Some was studied because of it affecting the baby in the womb, so they put a device to capture the sound in the uterus and it came in over 100db, causing concerns for noise trauma.

Did you have any issues from this? Did you use a specific kind that wasn't loud? Perhaps they have to be that level to penetrate, very concerned as my T is very bad as it is.

As for your keyboard issue, you should transition to looking up towards the screen. Your muscle memory definitely has your keyboard ingrained so it just takes a little practice to start typing and let your muscle memory do the work. A lot of people also raise they keyboards too and only use their eyes to look down slightly once and awhile too. Hopefully you can figure something like that out.

 

About a week ago, I was asked thru personal message if ultrasound is safe for the masseter, jaw and TMJD treatment. It's a difficult question to answer as a study link that I provided indicated that it may also cause radiation of this pain into the face or neck. I read studies and case histories to your concern above and OB doctors where I worked took this into consideration and if the patient had tinnitus.

Studies that I read for neck and thyroid ultrasound testing with having tinnitus stated they are safe as there is muscle between spine. No studies include all the all the processes that can affect the ears. Enflamed nerves with association to the ears always need to be considered, but how does one know that without radiological testing. There's always so much to consider with physical tinnitus. A CT with radiation may affect the thyroid, salvia glands and other stuff, only found by doing deep research. The oral cavity can be affected by many processes, procedures or tests, but there are so many different tests for oral problems. Any test, device, med, or overuse of a vitamin may cause a problem for some. Consideration is needed per processes as to safe procedures or treatments.

I found that in one study, beyond the hundred causes of burning mouth, a top cause discovered issue is nerve damage causing lesions - mouth sores. This could be caused from an immune system problem where nerves in the soft and hard palate may be weaken. So with use of a mouth guard or tooth brush that touches the gums often causes burning mouth and/or tongue. Previous fungus issues can resurface from dehydration, stress or toxins causing mouth sores to happen easier as palate nerves are weakened. I have burning mouth and tongue and I also have to be careful of foods and smoke.

As Susan Shore a long time researcher has said, procedure methods require studies and that physical problems if present need fixing.

Being asked to consider a question may require one to answer after many hours of research. Entire physical and other history really needs to be known. The true loudness of tinnitus and composition of pain and movement needs to be known. There's over a thousand different test methods of different natures for physical association.

My neck ultrasounds did not extend near the bones behind the ear so I was able to wear headphones. The noise level was just above whisper. My ultrasounds were for veins, arteries and thyroid and I didn't have a choice not to get certain radiological exams with what I have going on, including others sounds - hums and thumping.

As far as keyboard use, I also can't extend my arms or shoulders for very long especially in a sitting position. I also can't stand still for very long due to leg vein disease.

I hope you find relief.

Update: Have you decided on an ultrasound? You mentioned other tests.

 

Hi Greg. So far, CT scan came back fine of the sinus/ear. Allergy test seems fine, from a 0-5 scale I have a few 1 on a couple categories which seems to be a non-issue, but will have to talk to doctor about it.

My right ear vibration has been steadily decreasing in frequency the last 2 weeks. The only difference has been me using a rolled up tissue to block the outer canal lightly. Which I was wearing almost all day. I used to do this for Hyperacusis/T increases from work when I got home, so started it again after I felt my T was getting worse, somehow this has helped. Or, it was naturally going to subside anyways.

It's still triggered at times if I get very upset or the vibration of a car drive.


My left ear, which never had issues in the past, seems to be struggling still. When my vibration started in the right in May, I mentioned my left ear started doing weird things shortly after. A physical constriction of the eardrum in fast repetition 3-4 times every 15 seconds to a minute. This issue has subsided somewhat but I occasionally do get it albeit not as intense.

The left ear has been "clicking" more. Very random usually. Usually brief. This morning though I awoke to it clicking, doing a light click, click, click, click then pauses for a minute before doing it again. I've never had it last an entire day with it going off an on, usually it's brief but for some reason it's not today. So, I'm not sure what has happened. I did have a brief acoustic trauma on Friday when a 3 panel wood room divider tipped and fell next to me, which caused pain in my left ear for the rest of the day and a slight T elevation. I don't know if this has anything to do with it. I've never in the past had loud noise cause any clicking though.

I still believe that my emotional collapse in May, an entire day of crying and being upset over a loss, was the trigger for this. While that doesn't make sense, I think it somehow affected my entire neurological system. It can't be a coincidence that I started getting muscle spasms around my entire body, ear vibration sound in the right, and clicking/constriction type of thump off and on in the left. All happening the day after my grandfather died and using those stupid damn earplugs. I think one of the two, or both, did something.

I'll continue to monitor this and try to rule out other things. Haven't got the ultrasound yet, but will be pushing for it at the next GP visit.

 

Hi

Did it ever come back? Dr prescribed me Klonopin today.

 

Hi everyone. Reading through this thread and it sort of just ended. There are some good discussions going on here and I'm wondering what if anything have people done or tried, or where they are now in their journey, as it's only been about a year. I've started another thread because I was lucky enough to get new myo symptoms, likely palatal, after all of my MEM symptoms went away after severing the tendons. I'm very interested (selfishly!) in learning about all the the theories (e.g.: thyroid, etc.) that have been proposed here, so when I go to my neurologist (my neurotologist told my he can no longer do anything for me) I will be prepared and ready to talk "shop" and suggest ideas, like getting an MRI, testing for particular underlying disorders (e.g.: MS, etc.) and potential drugs to combat these HELLISH clicks.