1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

Thought I was done but Menieres disagreed

Discussion in 'Your Living Room' started by KaSchu, Oct 26, 2019.

  1. Megan Henry

    Megan Henry Member

    78
    15
    8
    Oct 5, 2019
    Hey Diane,

    The deeper I get into research the more I think my ear and balance issues are related to my TMJ dysfunction. I just did a vigorous massage on my temples with the palm of my hand and it made my tinnitus go WAY down, almost non existent. Apparently tmj occurs 90% in women of child bearing age. I'm not sure how old you are, but it's worth investigating if you have tmd. Issues with tmj can cause fluid build up behind ears, disequilibrium, tinnitus, pressure in head and ears. I'm getting a splint in a few days to hopefully correct my jaw. I just wanted to mention this to you as another option.
     
  2. teesdale

    teesdale Member

    223
    12
    18
    Oct 24, 2014
    On this string, there seems to be a lot of dizziness/lightheadedness without the rotational vertigo. For me, the first 25 years of the disease I had severe rotational vertigo, but the last 5 years have been more disequilibrium/unsteady environment. The last 4 months it has been nearly every day. My Oto just added the diagnosis of PPPD (Persistent postural-perceptual dizziness) to my long-standing diagnosis of Menieres.

    Apparently, PPPD is very treatable. From the Practical Neurology website: "Once recognised, PPPD can be managed with effective communication and tailored treatment strategies, including specialised physical therapy (vestibular rehabilitation), serotonergic medications and cognitive-behavioural therapy."

    I've started the vestibular rehab, but I believe I will be looking into the other two forms of treatment this week.
     
    • Informative Informative x 1
  3. Nathan

    Nathan Active Member

    780
    41
    28
    May 12, 2014
    Subsurface ocean, Europa
    [​IMG]
     
    • Funny Funny x 3
    • Like Like x 1
  4. Pupper

    Pupper Active Member

    974
    67
    28
    Oct 15, 2016
    teesdale: "For me, the first 25 years of the disease I had severe rotational vertigo." How often?
     
  5. Diane

    Diane New Member

    4
    0
    1
    Oct 28, 2019
    Thank so much for your input ! I'm 58, clinch my teeth a lot but don't think it's tmj. Hope you're feeling better as I send this message
     
  6. teesdale

    teesdale Member

    223
    12
    18
    Oct 24, 2014
    Pupper, anywhere from weekly to semi-annually. In 25 years, I would estimate roughly 120-130 attacks. I started getting serious when I had my first (and only) drop attack on Thanksgiving eve, 2008. That's when I found this site and implemented JOH among other things including, more recently, A/V's.

    Those attacks were hell but I never felt like life wasn't worth living. This constant disequilirium, chronic dizziness does make me feel that way sometimes. I'm hoping it is PPPD and I can get it under control.
     
  7. Pupper

    Pupper Active Member

    974
    67
    28
    Oct 15, 2016
    I'm very sorry teesdale. About how long would your rotational attacks last?
     
  8. Mac

    Mac Active Member

    328
    40
    28
    Oct 23, 2017
    Teesdale,

    I am in the same boat as you...literally the same rocky boat. 10 plus years of vertigo has become constant disequilibrium and dizziness. Which many days is very demoralizing.

    What doctor are you seeing?

    If you have any more info on what drugs or therapies they recommend please pass along...Thanks!

    Mac
     
  9. teesdale

    teesdale Member

    223
    12
    18
    Oct 24, 2014
    The rotational vertigo would last anywhere from 2 to 8 hours. First one in 1990 was the worst. Eight hours of vomitting led to a split esaphogus and blood flowing out like a fire hydrant. That was my one and only trip to the ER. The rest were never as bad although the one in 2008 gave it a run for its money.

    I'm currently seeing Dr. Jason Brant at Penn Medicine in Philadelphia. He is the best doctor I have ever seen from a bedside manner perspective. He listens intently and never rushes. He actually calls just to see how you are doing. Unheard of in my dealings with other doctors. His only issue is that he doesn't believe in many of the theories. He stated that antivirals, allergy shots, and all of the other remedies have the same success rate as placebo - about 65% for six months before a return of the condition. I told him I had 15 months of symptom free living and improved hearing and the only thing I was doing differently was the antivirals and JOH. He shrugged probably thinking, "then why are you in here seeing me?" He would never say that but I wouldn't blame him for thinking it.

    He is standard protocol. Diuretic, steroid injection, gentamicin. He said he has never had a patient that needed to go beyond gentamicin. He told me he believes my issue at this stage of the game is the brain's inability to recognize center balance and he believes vestibular rehab is the answer. Even though he is a surgeon, he told me surgery probably wouldn't help me. That was a bubble buster as I always felt I had that as a last resort.

    Mac, I would look up this PPPD and see what it says. I plan to do that when I'm feeling a bit better.

    For what it's worth, I have been doing vestibular rehab regularly this week and it does seem to be helping.
     
    • Useful Useful x 1
  10. Pupper

    Pupper Active Member

    974
    67
    28
    Oct 15, 2016
    Interesting comment teesdale. Gent didn't work for me. But VNS did work, re. no more vertigo attacks. (So far). So it is a little odd your surgeon dismisses it for you.

    I still have head-movement unsteadiness. My MM doc keeps telling me to do vestibular rehab. I'm not going to waste money and time on going. But I'll start doing it at home. You seem like a reasonable guy. If you're giving it a shot, and you think it may be helping a bit...I'll give it a shot too.

    I just realized we've hijacked this lady's thread. Sorry Kaischu.

    "split esaphogus and blood flowing out like a fire hydrant" wtf. sorry, man
     
  11. KaSchu

    KaSchu New Member

    27
    9
    3
    Oct 25, 2019
    Well, I called my doc and said I wanted to try antivirals and he said why not? I started a 3 month course of acyclovir last week. So far, I don't notice any difference but we'll see, I suppose.

    My right ear, which has been a big troublemaker on its own these past 25+ years, at least always (usually) responded to steroids, indicating an autoimmune issue. Plus, I have other autoimmune issues (including hypothyroidism and severe allergies), so I'm guessing why the docs thought that. Allergies would always seem to trigger an episode, so we tried our best to keep those under control.

    This stupid left ear is being a pain in my a$$. Steroids just seem to piss it off - really. After both a round of both oral steroids plus the ever dreaded liquid kind directly stuck into my noggin with a really long needle both relieved my symptoms for about 24 hours and then BAM - it all came roaring back, worse than it had been before.

    All I can tell you is that as bad as tinnitus in one ear is, having it in both ears really blows. And can't my stupid ears at least try to have the same sound? There's ringing in my right and roaring in my right - that sounds like the lyrics to a really bad song, doesn't it?

    And Diane - hang in there. This presents differently for all of us. It can seem dark on days but I have never, in my many long years of dealing with this, not had the sun come back out. You will get your life back. Just give it time and find a good doctor you trust. One who specializes in hearing & balance preferably. And figure out your triggers. Apparently, while my right ear didn't seem to care if I ate salty chips and drank a lot of wine, my left ear really doesn't seem to like it.
     
    • Like Like x 3
  12. KaSchu

    KaSchu New Member

    27
    9
    3
    Oct 25, 2019
    I also think it's really funny that I'm showing up as a "new user". I was an active member of this forum years ago, long enough ago that I'd been purged from the system when I finally needed the support again.

    I'm trying really hard right now to feel lucky that I at least got a few years there where Meniere's settled down and played a bit nice. I'll probably do a better job of it, though, when the symphony that my naughty ears are playing quiets down a bit.

    And thanks to whoever it was that said I was funny. My 2 teenage daughters would heartily disagree (and be horribly mortified by my every word), but I do my best. :) If I have a choice between laughter and tears, I'm going to choose laughter every time.
     
    • Like Like x 1
  13. Pupper

    Pupper Active Member

    974
    67
    28
    Oct 15, 2016
    hope the best for you. funny that you've been here longer than me.
     
  14. Speedyhaze

    Speedyhaze New Member

    21
    5
    3
    Jul 15, 2017
    Worthing United Kingdom
    Yes Menieres definitely sucks, I am also walking around like a drunken sailor every day, I accidentally knocked in to a very rude lady in the supermarket recently, she said 'watch where you are going, are you drunk' I just looked at her and said no I suffer with Menieres and she looked at me as if I was from another planet. It's also funny when you say you have had a vertigo attack and people say oh I didn't know you were afraid of heights. You have to see the funny side sometimes, it's what keeps me sane.
     
    • Useful Useful x 1
  15. AnneT

    AnneT Active Member

    897
    159
    43
    May 14, 2014
    Alberta
    KaSchu
    "And thanks to whoever it was that said I was funny. My 2 teenage daughters would heartily disagree (and be horribly mortified by my every word), but I do my best. :) If I have a choice between laughter and tears, I'm going to choose laughter every time." Yes, this disease promotes a morbid sense of humour!

    Speedyhaze
    "drunken sailor" Yup, that's me too, especially if the lighting is low. I'm going to start taking my cane when I go out in the evenings... Maybe they'll realize my staggering get is something medical... I guess people might still think I'm drunk, but if they are mean I can whack them with my walking stick. Ha!
     
    • Like Like x 2
    • Funny Funny x 2
  16. Nathan

    Nathan Active Member

    780
    41
    28
    May 12, 2014
    Subsurface ocean, Europa
    Granting your right ear has decided to be a troublemaker, & your left a pain in your arse, perhaps emitting different sounds is evidence of their orchestrated genius?

    Wouldn't that be weird?
     
    • Like Like x 1
    • Informative Informative x 1
  17. KaSchu

    KaSchu New Member

    27
    9
    3
    Oct 25, 2019
    Well, I always wished I had musical talent. Orchestrated tinnitus isn't quite what I had in mind, though. :)

    Thankfully, the roaring in the left ear stopped after a few weeks. I'm left with a relatively quiet ringing in the right, which despite not wanting to do so, I can live with.

    This has been the longest my symptoms (except tinnitus) have been active since my diagnosis in 1994. I'm at least 90-95% back to normal, with only occasional "swirls" (what I call those brief, seconds long episodes of vertigo).

    All in all, while I'm grateful that this episode seems to have almost run its course, I'm a bit resentful about the whole thing, especially that doctors can do so little to help manage this. It would seem like treatment should be better in 2019 than it was in 1994!
     

Share This Page