Skip to main content

View Diary: KosAbility: Coping with Meniere's and life's other challenges (76 comments)

Comment Preferences

  •  Great diary (18+ / 0-)

    I had my first attack of Meniere's in the early 1990s. The vertigo has come and gone over the years, but I have permanent hearing loss and the constant, maddening tinnitis.

    I want to thank you for this information because I also have aural fullness, almost exclusively in my right ear. I mentioned this to the last ENT I consulted and he just dismissed it, never even suggesting that it was tied to Meniere's.

    Your diary is a great resource. I'm going to bookmark it for future reference. Tipped and rec'd.

    "...in a society governed passively by free markets and free elections, organized greed always defeats disorganized democracy." Matt Taibbi

    by Getreal1246 on Wed Feb 29, 2012 at 02:33:54 PM PST

    •  Thank you! I cannot believe that your (13+ / 0-)

      doctor dismissed the aural fullness as connected with the disease. Not everyone has it, but the large majority do. At times, I just feel like the doctors unless they are experts on the disease really do not have full information. It is so frustrating! I waited years until they did the vgn caloric test. Literally they checked to make sure it was not a brain tumour, one doctor tossed me on my side and with no response (it was not BPPV) gave me betahistine and sent me on my way. It was only after I got to the 4th doctor that they finally checked did the MRI again, did the vgn caloric, look at the pattern of hearing loss and diagnosed me. 4 years of waiting for a diagnosis and they ignored the doctor that said we need to watch her as it will probably go bilateral.

      I am wondering if since it is not fatal, there is not much that can be done except ameliorate the symptoms with surgery that we are just monitored.

      I had to hunt information down, talk to others with the disease to get treatment information and symptom information; it was as though everyone that has it is just left to deal with it. Sending hugs to a fellow sufferer ... this condition/disease whatever simply is awful! {{{{getreal1246}}}}}

      "Hegel noticed somewhere that all great world history facts and people so to speak twice occur. He forgot to add: the one time as tragedy, the other time as farce" Karl Marx, The Eighteenth Brumaire of Louis Bonaparte .

      by NY brit expat on Wed Feb 29, 2012 at 02:48:02 PM PST

      [ Parent ]

      •  Could have been poor communication (7+ / 0-)

        In some fairness to the ETN, I may not have described the feeling properly. I said I feel like I have water in my ear and get a popping sound. But, when you described aural fullness, I knew immediately that was what I was trying to describe. I'll give him the benefit of the doubt. But, I'm glad to know there is a name for it and that it is a part of Meniere's.

        Since I haven't had a vertigo attack in quite a while, I have kind of been trying to just live with the other symptoms. The tinnitis is sometimes overwhelming, but my internist, who I totally trust, says I'm not likely to find any help for that.

        When I hear how others struggle with vertigo, I consider my own symptoms pretty mild. The episodes I have had are usually responsive to Antivert, so I am very lucky.

        Thanks again for a very helpful diary.

        "...in a society governed passively by free markets and free elections, organized greed always defeats disorganized democracy." Matt Taibbi

        by Getreal1246 on Wed Feb 29, 2012 at 03:57:24 PM PST

        [ Parent ]

        •  It is hard to describe the aural fullness (5+ / 0-)

          but either a sock in your ear or the airplane thing is the only way that I have been able to explain the feeling to people. Two members of my family also have similar problems; one mild and the other moderate. When I asked them about the sock in the ear, they knew exactly what I meant.

          As I said above/below (in response to in her own voice), normal tinnitus can be helped with a white noise generator or leaving a radio or tv on low as background noise (supposedly the external noise helps with the internal noise). But it hasn't been working with the recent weird full-time tinnitus that I have been having with the ocean sounds and then the explosive high beeps. I have had tinnitus for most of my life; this version is simply qualitatively a new thing and it is driving me nuts!

          Wishing you the best getreal1246; may the vertigo remain calm! {{{{getreal1246}}}}

          so glad that this was of some value! :)

          "Hegel noticed somewhere that all great world history facts and people so to speak twice occur. He forgot to add: the one time as tragedy, the other time as farce" Karl Marx, The Eighteenth Brumaire of Louis Bonaparte .

          by NY brit expat on Wed Feb 29, 2012 at 04:14:28 PM PST

          [ Parent ]

          •  It reminds me a little of both (3+ / 0-)

            and also, if you go to a concert and can't hear afterward in one ear (like if you're against a speaker), often it's full too.

            It's a little like if you have a cold too and your sinuses stuff up. And like having an earplug in there. Or being in a plane.

            It's usually in one ear too.

            You might want to re-think those ties. - Erin Brockovich

            by mahakali overdrive on Wed Feb 29, 2012 at 05:37:43 PM PST

            [ Parent ]

            •  yes, a concert ... that also ... that is another (3+ / 0-)

              reason besides the crowds, the noise and the fact that I cannot hear as well as I used to that I do not go to concerts anymore; glad I got to so many before this happened! I cannot hear for hours after that, ear goes totally dead!

              "Hegel noticed somewhere that all great world history facts and people so to speak twice occur. He forgot to add: the one time as tragedy, the other time as farce" Karl Marx, The Eighteenth Brumaire of Louis Bonaparte .

              by NY brit expat on Wed Feb 29, 2012 at 06:20:04 PM PST

              [ Parent ]

              •  Ditto! (1+ / 0-)
                Recommended by:
                NY brit expat

                Me too. I don't go anymore. I'd been to so many too, growing up near a big venue was great. And if I did feel bad, I was two blocks from my home. Now, I never go. I also have sharp pain in the ear (I think it's my Left ear, since that's the one without hearing, but I thought it was unilateral, though the fullness is in my right ear and is newer, past eight years maybe?)

                My husband suggested getting me a cane to walk on bad days. He felt it would show people that I was feeling unwell. I am thinking about it. Plus, I think canes are so beautiful besides. Whoops! There's that steam punk obsession, laugh! Maybe I should rock one though. I think I'll ask for one for my birthday. Maybe then too students won't think I'm their age... :) I HATE that and totally "dress up" to distinguish myself. Subsequently, I hate the crud I wear and try to dress a bit like a British teacher... polo shirt, cardigan, pin skirt, hair in a bun.

                Off-topic, sorry. Pre-bed nightcap :)

                You might want to re-think those ties. - Erin Brockovich

                by mahakali overdrive on Wed Feb 29, 2012 at 10:33:02 PM PST

                [ Parent ]

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site