Weird Ear Symptoms (MEM/TTTS/Diplacusis): Clogged and Vibration Sensation

Discussion in 'Support' started by Samantha R, Jun 9, 2020.

    1. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Agree.

      Stapedial myoclonus - yes.
      Muscular vibration - yes
      Diplacusis - yes

      From your procedures and all your complaints and symptoms, over and over research shows cause was from infection (maybe turned to bacterial) between the subarachnoid space and perilymph contained within the inner ear. This would also explain your hearing tests results.

      I would continue with prednisolone.
       
      • Agree Agree x 1
    2. lucy_snow

      lucy_snow Member

      Tinnitus Since:
      2018.03
      Cause of Tinnitus:
      hearing loss/ibuprofen
      I'm so sorry to hear that you are not good.
      I'm also the same, not well.
      I'm doing everything what Greg Sacramento suggested.
       
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    3. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      yes I have been diagnosed with Meniere’s by an ENT who simply looked at my hearing test where I have now some low frequency loss.
      He started banging on about no salt.
      Didn’t ask anything about my symptoms leading up, picked up my notes, asked me what I did for a living and told me he wouldn’t tell me how to do my job. Complete jerk.

      I sought a second opinion via Telehealth and was
      told SSNHL.

      I’ve found a support group on FB for Meniere’s and they’ve recommended a specialist who also treats myoclonus. I’ve got a referral to send through Monday.
      I actually spoke to her brother/colleague on Telehealth, he was the one who told me I have SSNHL.
      I’m sure my hum is my middle ear muscles spasming.
       
    4. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      I agree with your statement on the low frequency loss. That’s how I was diagnosed by this jerk of an ENT without listening to my symptoms.
      Your losses in those frequencies are only mild, and wouldn’t be indicative of Meniere’s.
      From what I can gather, Meniere’s hearing loss fluctuates and I’ve had none of this. Just a sudden drop in low frequency hearing that wasn’t noticeable.
      I’ve had no vertigo either.
      Your washing machine vibration truly sounds like myoclonus and you should get yourself to a nuero otologist.
       
    5. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Thanks Greg. I’m continuing on with the prednisolone, though started a small taper now.
      You are my voice of hope and reason.
      I’m in a bad way, the low frequency tinnitus is at
      times unbearable, particularly in noisy places. I might have hyperacusis.
      Then today it has stopped and the myoclonus has started with a deep hum. I wonder if the roaring wind tunnel tinnitus is also myoclonus?
      I sought a third opinion after presenting at a private emergency hospital. This ENT was baffled
      why I was diagnosed with Meniere’s and went along the lines of there being an imbalance of fluids that would take time to balance out.
      He went down the route of anxiety but my purpose for presenting was to try some diuretics.
      What do you think?
      I quoted your posts and he was impressed and somewhat speechless.
      He said he wouldn’t do surgery for myoclonus, but that’s ok. I have found an neuro-otologist in Melbourne who I’ve been referred to who has done the procedure a number of times.

      I’m also doing HBOT sessions and laying in that oxygen tank thing gives me too much time to think.....
      I come out a little (well very) emotional and the doctor there sat with me and listened to how distressed I was that I’m getting crappy different diagnosis left right and centre and nobody is listening to me.
      He’s been ringing around and I’ll see him tomorrow and see how he has gone.
       
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    6. shasta0863

      shasta0863 Member

      Tinnitus Since:
      11/2007
      Wondering if this is the same thing I've battled the last year. Mine came after a huge bout of grief/crying of my grandfather passing. I awoke the next day, used an earplug for a few seconds (was fitting it/molding it) and when I took it out this vibrating type oscillating HUM that I could feel was going off. Low frequency sounds in the distance also distorted a bit when entering the ear.

      The sound was akin to a loud truck outside idling, just deep in your ear. It could be really intense and you really feel it, to just lightly there, depending on how aggravated it gets. Definitely not "brain" tinnitus, no matter how many dumb ENT's claim otherwise. The feeling of it was most disturbing, as it was almost unmaskable.

      It would get worse when laying down, wearing earmuffs for too long, sleeping on the bad ear, driving in a car with a lot of vibration.

      I could stop it by shaking my head or talking. Sometimes it would just stop or just lightly be there if I was lucky for a few hours.

      This was almost 24/7 for first 8 months or so then began to have intermittent breaks. By just about the one year mark, just this April, it started to go away for days at a time, only coming back if aggregated from things like the city hiring idiots to put their tree crusher next to my house vibrating my entire home, or if I get really upset.

      Definitely not cured, but it's progress even if it took a year.

      I'm convinced it is some type of MEM/TTTS condition which from what I've seen there's nothing that can really be done if there's not something outside the actual inner ear that's causing it, since the muscle itself are too small to really be affected by any treatments. The body healing itself in terms of MEM/TTTS seems to be what most people have told me to hold onto who were familiar with this. I was told it could take up to a year to see progress, which is when I finally saw some. Though I don't know if I'm out of the woods yet, and terrified it will come back 100%. But it seems healing in the inner ear for these conditions occur very, very slowly.

      Strangely enough, this condition I had like 4-5 years earlier but it was more mild. I awoke to what I thought was a popping sound in my right ear, and then heard the vibrating hum. Over next 5 to 6 months it would usually just appear right after waking up and go away. By 6 month or so mark, it was gone and never had it again until 2019, years later.
       
    7. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      do you have low frequency hearing loss with the drone?
       
    8. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      I'm so sorry for this experience. :huganimation: A complete jerk indeed. Makes my blood boil how dismissive doctors can be.
      Is this different than an otoneurologist?

      I started at one and he brushed it off as regular tinnitus although I told him about how irregular my case was. Because by that time I got to him, my low hum followed a pattern: started ringing Monday afternoon until Wednesday morning when it stopped and stayed gone until Thursday afternoon. Went berserk that night through Friday, that's when I visited the doctor, Saturday off, came back by Sunday night, and so on. It went away completely the next Friday. For a week or so I thought that it was becoming pulsatile, it didn't. I had 2 quiet days, then my UHF bilateral tinnitus started, which hasn't stopped for almost 9 months. I'm pretty sure that the two types have different origins, because they behave completely differently, but nobody in the medical field seems to care. Tinnitus, deal with it.

      All my scans, other tests came back negative. I'm really grateful right now it's in remission, the UHF bilateral tinnitus is more than enough for me to deal with.

      Do you know what tests are used specifically for diagnosing myoclonus?
      I had tympanometry and reflex test when I still had the low hum. Tympano was really shallow, and reflex test definitely not normal although the audiologist said stapedius reflex could be induced in both ears, but an other audiologist later took a look at the results and told me that stapedius reflex was absent on the left side. I'm not willing to undergo an other reflex test, because it was loud and my regular tinnitus is awfully reactive to sounds, and probably a coincidence, but started a week after the tympanometry.
       
    9. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      An update for anyone who is interested.
      My low frequency hearing loss has completely recovered. Back to normal.
      The diplacusis is gone.
      The roaring wind tunnel tinnitus is gone.
      The myoclonus remains my only symptom.
      I’m still on prednisolone but tapering now.
      I don’t need HBOT anymore as the loss has recovered.
      I took diuretics in case I had fluid in the inner ear. Coincidence or not but the symptoms resolved on day two of the diuretic.
      Not out of the woods, but much better.
      @Greg Sacramento
       
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    10. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      @Kriszti
      Sorry, I’ve been all over the place. Otoneurologist I did mean!
      You certainly have myoclonus. Join the FB group Middle Ear Myoclonus.
      You need to find a specialist who acknowledges and will treat this condition.
      They have a file of doctors on there who’ve treated MEM with surgery.
      Seek out a doctor on there if it comes back.
      Coincidentally, my high frequency (mild) tinnitus started a week after my first bout with myoclonus.
      From what I understand, some myoclonus can actually be heard by others. Other times it’s just diagnosed on symptoms alone.
      I had normal tymp and muscle reflex today, while my myoclonus is playing up.
      I think myoclonus is at least acknowledged by more ENTs but most would tell you to live with it.
      There are ones who will perform surgery to cut the stapedius and Tensor Tympani muscles.
      On the FB group, there are quite a few that have had the surgery done with good results.
       
    11. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      So sorry to hijack this thread but can you tell me more about Aldosterone? I'm looking into this as I believe my ototoxicity, among other things, damaged my strial Na/K transport. Does it have to be bio-identical or can Florinef be used (even though it's a mixed mineralocorticoid and corticosteroid)?
       
    12. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      @Samantha R

      First, I'm so glad that tunnel tinnitus, diplacusis and LFHL are gone for you. :) Wonderful news.
      You wrote that meanwhile your regular, high frequency tinnitus was better, is it still?

      Thank you. It could be. I will try to seek out a specialist, but I'm located in East-Central Europe, it won't be an easy task...

      (Although I hate that every mysterious condition is blamed on anxiety and mental health problems until proven otherwise, in my case, I think that the low hum tinnitus can be in correlation with stress, because university has been giving me an irregular amount of truly debilitating stress and these bouts of low hum presented themselves when preparing for dreaded exams. Maybe coincidentally, but in 2018 when I took a year off, no ear issues. What weakens my theory is that I have had other exams which had an impact on my mental health since 2016 without bouts of tinnitus.)
       
    13. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      thank you! I’m still very on edge and the myoclonus is still irritating me.
      I’m mostly concerned about having Ménière’s disease.
      The hospital doing HBOT did call the doctor to clarify his diagnosis as they could tell I didn’t understand.
      Apparently I had signs - tinnitus, aural fullness and low frequency hearing loss - that could be early Meniere’s. He always tells his patients to go on a low salt diet for a month to see if it helps. If it does, then it’s diagnostic of Meniere’s?!?!
      Anyway, time will tell.
      I’m losing weight doing the low salt diet, there is a positive.
      My high frequency tinnitus is behaving, but that’s the prednisolone suppressing it. It’s never a bother to me anyway for the last few years.

      Certainly myoclonus could be stress related.
      I’m thinking mine is more hormonal as both bouts with it came post partum and post IVF, though this last month has pushed me to the brink.
      Who knows? It’s the mystery of the ear.
       
    14. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @FGG Hi my friend. Not sure if lack of Aldosterone or too much has contributed to Samantha conditions. A simple test would tell.
      It's often unclear for these underlying mechanisms.
      Can you send me a message, because this will get involved.
       
      • Like Like x 1
    15. mariagrc

      mariagrc Member

      Tinnitus Since:
      05/2013
      Hi! I just wanted to share that your case looks pretty similar to mine. It's been seven years for me since the onset. Still undiagnosed.

      On 2013 I got sudden low frequency hearing loss, 40db at 250hz, 50db at 500hz. Aural fullness, hearing distortion, like a blown speaker, etc... Only right ear. I recovered almost all my hearing but a slight low frequency hearing loss and slight tinnitus got stucked there since then... It took months, I would say a year, to recover my mental health, that hearing was absolutely insane. It took a while to my useless otoneurologist to prescribe me prednisone.
      Years went on and it turns out that it became bilateral. Each time the distorted hearing comes back I take a course of prednisone.

      I've been today at the otoneurologist, I went to 17 inner ear specialist until I got one that at least listens to me. My hearing is fine, there is a slight loss 15db at 500. 10 days ago my hearing was distorted again, I started the course of prednisone and five days later I recovered my hearing.

      7 years later, it looks like this is autoimmune. Or allergie related. It comes back once a year, although it's not always the same season. From february to june, it's been varying along these years.

      There's something that I would love to understand. My right ear, the one which got a slight low frequency hearing loss "clicks" or "blups" every time in a while. It can be heard from outside. So I would like to ask to who know about myoclonus if there is any explanation about that.

      Finally, just for the record. Last year I took hidroferol, vitamin D, every month during winter. I didn't have this distorted hearing in the whole year. But I did have an allergy on my skin. I got tested but anything turn back positive. This year I took less vitamin D, and the distorted hearing came just after my period when strogens are down. I read a clinical trial about strogens and low vitamin D causing inner ear issues.

      Sorry for the long post... Just to let you know. No spinning or vertigo attack ever since this hearing issues appear. Although I am absolutely scared every time this comes back because I think that it will hit eventually.

      Cheers
       
    16. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      @Samantha R even though I know tinnitus has no rhyme or rule, there still has to be a reason for the sudden changes you have.
      No, I have high frequency loss in the ear that has high pitch sound, and no loss in drone ear.
      Go figure!

      You are lucky it all settled down otherwise when ear problems continue nothing really helps because there’s nothing anyone can do.
       
    17. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      do you think your middle ear muscles are responsible for the drone?
      I’ve got middle ear spasms at the moment, but they stop and start.
      Driving me nuts. I’m seeing an otoneurologist in August who’s treated patients with this before (surgery, makes me nervous). I hope it doesn’t come to that.
      I would have been a goner if things stayed the way they were.
       
    18. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      I’m so glad you have got relief.
      Ours sound very similar.
      I can stop mine by shaking my head, talking and movement.....
      I had this four years ago, on and off for a week.
      Now it’s come back as part of some other sinister process going on in my inner ear.
      Mine was an awful low reverberating hum on Friday night but stopped after I went to sleep.
      Then just as my diplacusis went, a gentler hum started on Saturday night.
      It went away last night but came back early this afternoon.
      I honesty have been to hell and back this month, I’m not sure how I’m still here.
      I’ve had catastrophic tinnitus, hyperacusis, hearing loss, diplacusis and middle ear myoclonus and I’ve got an ENT telling me I might have Ménière’s disease.
      All I ever had before was mild hissing.
      I’m spent.
      I believe there are surgeons who’ve performed the procedure to cut the muscles.
      I joined a FB group and they had contacted surgeons the world over and set up a spreadsheet of the ones who perform the operation.
      There’s one in Melbourne and I’m going to see her in August.
      I need this behind me to move past this horrific experience.
      I think I might have PTSD in a few months.
       
      • Hug Hug x 1
    19. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      About surgery, although I hope that it doesn't come to that for any of us, tensor tympani and stapedius muscle are responsible for defending the inner ear from loud noises, right? If either of them is cut, doesn't it make us much more vulnerable to noise induced damages? I'm an absolute layperson, so if I'm wrong, please correct me.
       
      • Good Question Good Question x 1
    20. UKBloke

      UKBloke Member Podcast Patron Benefactor

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
    21. Lucy MacLean

      Lucy MacLean Member

      Tinnitus Since:
      January 2020
      Cause of Tinnitus:
      Unkown
      Hey guys, sorry to jump on this thread. I am wondering if I have similar symptoms too. My right ear is so distressing... it sounds like an aeroplane outside and then when I plug my ear it totally stops... ENT is now putting it down to Eustachian tube dysfunction - just wondered what your thoughts were?

      My hearing results too...

      24C88F3D-FC6C-4482-92A4-A744A0489011.jpeg
       
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    22. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Do you have a sensation as well? Mine is like an intermittent buzz when is starts up and then becomes continual. When it winds down it does the same thing.
      Everything is put down to Eustachian Tube dysfunction.
      More likely when plugging your ears you affect the vacuum in the middle ear and it somehow stops the muscle spasms.
       
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    23. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
    24. UKBloke

      UKBloke Member Podcast Patron Benefactor

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      I think before surgery cutting muscles etc, it can be an idea to research more minimally invasive treatments. The Dusseldorf clinic protocol addresses inflammation that I think can lie at the heart of many of these chronic conditions. Whatever happens you'll get through it.
       
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    25. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      I have had this, although I always say mine sounded like an idle washing machine and was vibrating. When I plugged my ear, it stopped, when covered my ear, it stopped, when I was talking it was gone too. Lasted 1-3 weeks, every year from 2016 (except 2018). It's in my left ear only and in that ear I had problems with ET much earlier. Not one of my ENTs (I visited like 5) thought anything about it, but I will ask about myoclonus.

      How long do you have it?
       
    26. Lucy MacLean

      Lucy MacLean Member

      Tinnitus Since:
      January 2020
      Cause of Tinnitus:
      Unkown
      Hi @Kriszti, I am coming up to 6 months now. It’s driving me absolutely mad. More so than the tinnitus in the left ear which has actually got better in time and can only really hear it in a totally silent room and even then it doesn’t bother me much now. It’s the right ear that is driving me mad. I feel like no one can help me and it’s not going to stop although yours did which does give me hope. My ENT said it was something to do with the ear pressure and Eustachian tube. It’s just weird how it stops - it also goes over things like the bathroom fan... oven. Did yours?
       
    27. shasta0863

      shasta0863 Member

      Tinnitus Since:
      11/2007
      An awful low reverberating hum is how I'd describe it as well. Seems the mechanism causing it might be similar, we just may have different reasons for the actual cause.

      Curious on diplacusis, while I can't say I have this, from reading it it reminded me a few times where my bad ear would suddenly feel different, like the pressure had changed on for that ear. Then low frequency noises were entering the bad right ear differently than the left, so it felt completely off.

      I wonder if that is diplacusis, but perhaps ETD issues and other structural problems can cause similar type of symptoms.

      The only thing that has helped me is time. Which is the shittiest of things to help. I can only surmise that these muscles were weakened and were in a state of flux from my emotional stress and break down. I believe I was in some sort of feedback loop from sheer crying and break down of dealing with death for the first time.

      Because outside this spasm issue in the ear, I developed random spasms on my body, that took almost a year as well to finally go away. I think perhaps my nerves and body was in a state of spastic loop and my right ear was affected because it's perhaps weaker and more damaged compared to the other ear.

      I'm also on the bad T/H boat as well, so I hear you when this other bullshit MEM/TTTS what ever it is, is just fuel on an existing bon fire that we don't need.

      I wish you the best, please update us on any new info or symptoms, and any developments with possible surgical options.
       
      • Like Like x 1
    28. shasta0863

      shasta0863 Member

      Tinnitus Since:
      11/2007
      Would you say it's a low reverberating hum? That osculates and intensity can change from very mild to very intense depending on how aggravated it gets?
       
    29. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      The intensity and volume was constant and horrible. It's hard to say, it was low and humming, and sometimes thumping joined the party too.

      (I actually don't understand reverberating, not my native language)

      The earlier bouts were similar, but never ever this bad. Annoying, sure, but not life altering. And the sound was similar, but not exactly the same. This fall it was more motor-like, earlier it had more of a very low, foghorn type of touch to it. I could sleep back than, this time, no, because I always woke up to the sound and I guess, anxiety played a huge role in my insomnia too. What I don't understand in hindsight, why on earth didn't I use earplugs for sleeping in the affected ear, because it did stop it, but maybe I realized it later, I don't know. Clearly shows how on edge I was and wasn't able to even think. Though I couldn't sleep at all even in the inbetween nights when it went into remission.
       
    30. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      "Since the movement phenomenology of MEM tinnitus is rarely described and clinical neurophysiologic studies of the tensor tympani and stapedius muscles are impractical, it is unclear whether or when the phenomenologic designation “myoclonus” is accurate. Analogous to the tinnitus of EPT, MEM tinnitus likely reflects a variety of causes. While tensor tympani or stapedius myoclonus may explain some cases of MEM tinnitus, middle ear muscle movement may also represent a final common pathway for a variety of acoustogenic processes. A systematic exploration of the anatomy, physiology, and phenomenology associated with myogenic tinnitus clarifies some of the confounding factors that muddle MEM tinnitus and related disorders."

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3629860/

      This article has explanation, but it's very limited. There's no stat data studies showing possible cause to those with tinnitus. Examination of reading a 1000 case studies on individuals and 1000 postings of those with MEM is a little helpful to get an idea if your cause is from a physical condition (that may relate to tinnitus or not), medication (which there are plenty) or brain activity picking up the sounds made easier with having tinnitus - common pathways. A problem is that most individuals don't know if last paragraph below has involvement.

      With tinnitus it appears that MEM is more common when a certain procedure is done where meds are also used. It appears that a few more that get MEM also have a lack of Aldosterone or too much, but only lab studies have gathered this information. So this has not been incorporated into a designed MEM study. A study is underway.

      Perilymph extracellular fluid balance and way more so if the cochlear aqueduct is particularly patent seems to present MEM with having tinnitus after a procedure where meds are used. I posted one study about this earlier in this thread that discuss certain procedures, but there are about 20 studies about this. Researchers believe so, but ENTs don't have a clue.
       

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