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

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

    1. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      That is a very good question.
      My ‘old’ tinnitus responds to curcumin and prednisolone so I believe there is some sort of inflammatory process behind that.
      Given that both these episodes came on after significant hormonal changes in my body (birth of twins, then IVF procedure), there has got to be a hormonal link.
      So part of me hopes this is just a transient hormonal imbalance that will settle, which was the opinion of one of the ENTs I saw.
      My old tinnitus came on not long after my first bout with the low humming and ear fullness.
      Goodness, I’d love to know what is going on, but I probably never will.

      I’m a bit of a dog at a bone with health, I’ll find a way to help myself.
       
      • Like Like x 1
    2. Kirstystired

      Kirstystired Member Benefactor

      Tinnitus Since:
      07/2020
      Cause of Tinnitus:
      unknown
      Hi, I've been watching this thread with interest.

      My tinnitus started after the birth of my daughter nearly 3 weeks ago , I have seen a few doctors and the latest ENT I saw suggested it was a problem with the eustachian tube or inner ear as a result of hormonal changes in pregnancy and it will settle with time. He had prescribed me prednisolone and it has helped. I've only taken one dose and already feel the tinnitus is quieter. I still have diplacusis though.

      Hoping this will improve with time.

      Xx I hope you have a resolution soon. Didn't realise what a lonely place tinnitus can be x
       
      • Hug Hug x 2
    3. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
    4. Kendra

      Kendra Member

      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      SSNHL/ Acoustic Trauma
      Currently 32 weeks and dealing with the same thing. Hopefully it will settle down for both of us ❤️.
       
    5. Kirstystired

      Kirstystired Member Benefactor

      Tinnitus Since:
      07/2020
      Cause of Tinnitus:
      unknown
      @DebInAustralia

      Apparently it was normal according to the consultant alongside my ear examination with otoscope.

      Xx
       
    6. Kirstystired

      Kirstystired Member Benefactor

      Tinnitus Since:
      07/2020
      Cause of Tinnitus:
      unknown
      @Kendra

      From what I've read (unlike me for some reason where mine started after pregnancy) symptoms usually resolve after pregnancy xx
       
    7. Kendra

      Kendra Member

      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      SSNHL/ Acoustic Trauma
      I hope so. My toddlers voice really sets it off so far. Scared to think what a screaming newborn is going to do.
       
      • Hug Hug x 1
    8. Kirstystired

      Kirstystired Member Benefactor

      Tinnitus Since:
      07/2020
      Cause of Tinnitus:
      unknown
      Well thought the tinnitus was quieter it it turns out it isn't tonight. Been struggling, don't feel this will ever go xxx
       
      • Hug Hug x 2
    9. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      sorry to hear about your struggles.
      Most likely this seems to be hormonal.
      I had an episode for a week, 4 weeks after my twins were born in 2016.

      This second episode was by far the worse and culminated in the low Frequency hearing loss, diplacusis and hyperacusis.
      It may be that I have Cochlear Hydrops, with a hormonal trigger.
      I’m managing it with 1mg low dose naltrexone (if prednisolone has helped you, this might too and will be something you can take long term).
      I also used diuretics.

      I would suggest having another hearing test as from what I’ve read, diplacusis is associated with hearing loss.

      Take care, I know how tough it is.
       
      • Like Like x 2
    10. Kirstystired

      Kirstystired Member Benefactor

      Tinnitus Since:
      07/2020
      Cause of Tinnitus:
      unknown
      Thank you for the reply.

      Im thinking its hormonal too,been doing lots of research and from speaking to the consultant they think progesterone seems to be the main culprit when it comes to the ear.

      My GP is very positive that this will settle with time and it will get better . I have some more tests on 20th August and discussion with audiologist.

      Will definitely mention the naltrexone. The diplacusis seems to have gone now which I'm relieved about x
       
      • Like Like x 2
    11. Kriszti

      Kriszti Member Benefactor

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

      Did you have your otoneurologist appointment? How did it go? Are you a bit closer to a possible diagnosis?
       
    12. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Hi Kriszti,

      Thanks for checking in.
      I did have my otoneurologist appointment- it was by phone due to the current situation with COVID-19 in Melbourne.
      We agreed potentially it is Cochlear Hydrops with a hormonal trigger.
      She said I was doing everything right in terms of treatment.
      I declined balance testing as my ears have been fine, and I didn’t want to ‘rock the boat’, so to speak.
      So I guess we assume hydrops.
      Not much else to do just yet, other than cross fingers and hope I don’t have another episode.
      Crappy way to live really.
      How are you doing these days?
       
      • Like Like x 2
    13. shasta0863

      shasta0863 Member

      Tinnitus Since:
      11/2007
      My MEM or whatever this is came back last night/awaking early today with a vengeance. I feel like I'm dead again.

      For the past few months I've been doing so much better. This vibrating hum type pulsation that I got last May after severe crying and sadness from my grandfather passing has of late been basically gone. I could still aggregate it by driving in a car that had an intense vibration from the engine, or if I wore earplugs for a bit, it would start up, but was subside quite quickly.

      Other than causing it, by default I was fine. I have been sleeping even on the bad ear, no problem.

      Suddenly yesterday, for no apparent reason, I started feeling a bit of deep ache and slight pressure in the ear. I thought it was just my ear doing it's thing again. As I've had pressure, pain, even distortion in how sound comes in while it's going crazy. Some middle ear issues, or Eustachian issue, idk.

      But, I wen't to lay down and thought I heard the rumbling but wasn't sure. I awake 5 hours later and it's back. Been months since I awoke to it. I panicked and got up, but tried to remain calm and wen't back to sleep. 4 hours later, I awake and the vibrating type pulsation it does, was back with a vengeance. I mean seriously intense and loud. It stopped after a few minutes, but it's been slightly residual at a 2/10 intensity off and on today. And it seems my AC unit outside my window which makes a vibration type feeling against my wall/room is setting it off again, which it hadn't done in months.

      I'm not in a great place right now, and I just can't believe this came back. I can only hope this is just some weird aggravation from something inside the ear I have no control over, and it will subside. I cannot go back to the way it was before, I won't make it.

      I just wish I understood why this got aggregated again. I got a little irritated/upset over something but it was brief, before I started noticing the pain/pressure coming on. Don't remember the vibration but these two symptoms were definitely a pre-cursor to it.

      I still don't even understand how last year I even got this to begin with. I had an entire day of crying, intense, sadness and being upset over losing my grandfather. I awoke the next day to a slight vibration in the ear. I put in a earplug for a little while, and after taking it out, it was 10x worse. And that started the almost year of this constant vibration with little breaks. It's just so utterly frustrating to get something and not understand how and why it happened from normal stuff like being upset/crying. Let alone how that caused over a year of a condition like MEM.
       
      • Hug Hug x 3
    14. shasta0863

      shasta0863 Member

      Tinnitus Since:
      11/2007
      Does anyone with MEM, or a middle ear/Eustachian tube issue that can cause a vibration type rumbling in their ear off and on, ever have sudden pressure and pain prelude the start of the main symptom of the vibrating hum/rumble?
       
    15. Ben Winders
      Pensive

      Ben Winders Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      acoustic
      I believe my story sort of fits here:

      I had an acoustic incident (in-ear headphones) in March 2020.
      5 weeks later I woke up with a low buzzing noise in my right ear/brain side sounding like an idling truck (but it wasn't pulsatile).

      Audiogram was ok (didn't have the extended one) and MRI scan was ok.
      ENTs are clueless. One of them told me could be something neck related, but it clearly isn't.

      After a gruesome 3 weeks I started sleeping with Google Home emitting low buzzing sound and sleeping on my left ear.

      That pretty much stopped the buzzing, but now, 6 months later, I have high pitched electric hiss in both ears.

      Right ear also has a slight "beep" in complete quiet rooms (or when I plug my ears).

      When I put an earplug in my right (bad) ear, my tinnitus will start screaming at me and becomes unbearable. Especially noticeable in car when driving > when I put a plug in my ear while driving the tinnitus goes mental in my right ear.

      A couple weeks ago I was feeling overly confident and slept on my bad / right ear for 3 nights. Low and behold - on the 3rd day the low buzzing tinnitus was back... after 6 months of nothing.

      3 weeks ago I suddenly (and for the first time) had a very clear pulsatile episode where I could clearly hear my heartbeat in my right ear (before that it has never been pulsatile) with a loud whooshing sound.

      And around that same time there was some twitching of the muscles behind / around the right ear that I never had before. I certainly also have some hyperacusis in my right ear > opening a jar, loud scream from child, squeaky door, air conditioning turns into a slight high pitched noise 'at the very top'.

      Ear fullness (mostly right ear) and ear pain (both ears) on a daily basis (currently have ear fullness while typing this), when driving ear fullness is very apparent (I live in a mountainous area, but I think it's more the noise of the driving that clogs the ear up, not the elevation changes)

      My main questions are:

      1) Let's assume I have tinnitus due to acoustic trauma, where does the very loud pulsatile episode + the muscle spasms (only in right ear) fit into that narrative? Is there a mechanism in acoustic trauma that can cause a pulsatile episode x months after the trauma or are they simply unrelated but very coincidental?

      2) Is it 'normal' for an acoustic trauma to occur and then only manifest itself 5 weeks later in such a dramatic way (the low engine car idling buzzing kind starting a month after my incident)?
       
    16. Kendra

      Kendra Member

      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      SSNHL/ Acoustic Trauma
      The tinnitus can start later. You possibly could have had a lot of damage after the acoustic shock and then 5 weeks later something happened that broke the camel's back. Do you still have the pulsatile tinnitus and whooshing sounds?
       
    17. Ben Winders
      Pensive

      Ben Winders Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      acoustic
      No I don't.

      It's just the electric hiss now, the slight beep on the right and - pretty sure - the low buzzing is still there as well once I sleep on my right ear again (or turn my Google Home off for sleeping).
       
    18. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      @shasta0863

      I'm so sorry to hear that your low frequency noise has returned.

      Have you tried muscle relaxants previously?

      Do you have a good ENT you can consult with?

      There is a Middle Ear Myoclonus Facebook group that has excellent information on specialists who treat MEM.
      I'm not sure where you are located, but that may be an option?

      How are you doing at the moment?
       
    19. AUTHOR
      AUTHOR
      Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Hi Maria,
      I'm so sorry as I missed your post.
      Our conditions sound frighteningly similar. Except I didn't seem to respond to prednisolone like you.
      How are things for you at the moment?
      If this is cochlear hydrops, my ENT specialist has a strong belief that a lot of Meniere's / Cochlear Hydrops cases are autoimmune.
      I'm taking 1mg LDN (low dose naltrexone), and I don't know if it's a coincidence or not, but I've been symptom free since taking it.
      This might be a longer term option for you if you believe your condition is autoimmune, as LDN modulates the immune system and is completely safe to take.
      I've also found out recently that I'm deficient in Vitamin D (along with some other issues). I hope supplementing with Vitamin D will help me.
      I also haven't had any vestibular symptoms. I believe I had a mild episode of hydrops 4 years ago, a month after delivering twins. I believe my ear symptoms are hormonal.
      Stay in touch, let's share any information that we think could help.
      Sam xx
       
    20. Kriszti

      Kriszti Member Benefactor

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

      The MEM Facebook group you recommend, is it the one with 235 members and a flower as the cover photo?

      Thanks for asking, things are not too peachy over here, but it's not entirely due to tinnitus, COVID-19 and overall uncertainty takes a toll on my mental health.

      I can't seem to find anybody in my country who is willing to even talk about hydrops, MEM. I'm currently not having the symptoms, the low hum is gone for the time being, so even if I'm talking about that I had it 3 times and most probably will have it in the future as well, nobody really pays attention. OK, I am preoccupied with the UHF monster in my head too at the moment, but I'm dreading the time when the low hum comes back, because the last time it was pure hell.
       
    21. shasta0863

      shasta0863 Member

      Tinnitus Since:
      11/2007
      I tried high dosages of magnesium without results. Never wanted to try actual prescription stuff as I don't want to chance my regular tinnitus getting worse. The vibration calmed down a bit, so at least it's not fully back to how it was last year where it was almost 24/7.

      Been to a lot of ENT, they "theorize" MEM but don't know. I basically had to even bring up MEM/TTTS. Nobody knows anything here, even so-called neuro-specialists.

      I'm not aware of the Facebook group. I don't use Facebook, will I still be able to access it? Could you link it? I'd be curious to contact people who are in the business of treating it. I'm on the west coast, in California.

      It comes back when I wear earplugs in the ear which really is a problem, because earplugs are the only way to go into areas that are more loud than I like. Now I'm just fully isolated since I can't wear them. Not even muffs. Even trying the car activates it, the vibrating rumbling does something to activate it for 5min or so after the cars off. A lot of unusual stuff like that.
       
    22. Zigs

      Zigs Member

      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Ear infection
      @Ben Winders,

      What buzzing tone / noise did you use on Google Home please? I need help with the buzzing noise!
       
    23. Kriszti

      Kriszti Member Benefactor

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      I don't think it's accessible without a Facebook account. I joined a group there, but it's private, only members can see the posts and comments.
       
    24. Kriszti

      Kriszti Member Benefactor

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      Well, it's 4.39 in the night and the dreaded, unilateral, very low frequency humming in my left ear is back. After almost a year. I had something a couple of weeks back which resembled this, but this time it seems to be back for the forth time in my life. I'm trying not to panic, to stay calm, and hoping that in a couple of weeks, it's going away. To be honest it's not as bad (yet?) as in last October, and it kind of masks my other two high frequency sounds. I hear them, but quieter. I have no idea what triggered it, nothing out of the ordinary happened and I have been religiously protecting my ears.
       
      • Hug Hug x 1

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