Newbie - sort of - well now what?

Discussion in 'Your Living Room' started by mcfarkus3, Oct 4, 2006.

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  1. mcfarkus3

    mcfarkus3 New Member

    Greetings all,

    Long time lurker here. I'm having a rough time right now, and need to vent. I've had the ear "butterfly" for 20+ years, and had my first really "good" attack in 2002 (diagnosis: Meniere's, right ear). Since then, I've had occasional quick bouts of dizziness, when the world spins for a second or two, then I'm OK. I've also been dealing with hyperacusis all of my life, didn't realize that's what it was until I came to this site!

    My problem these days is constant dizziness/unsteadyness. It started at the end of August, and is gradually worsening. I had my ENG, VEMP, ECoG, and rotational chair tests last week. That night, I had a full-blown vertigo attack, and had another a couple of days later, although I was on prednisone. I'm now shakier than ever, but I still get up and walk (with 4-tipped cane - another hint I found here!) about an hour a day. It wears me out.

    I just got the results today. Rotary chair and ECoG pointed to inner ear fluid pressures in my right ear, ENG showed "preponderance" to the right. VEMP was normal. Absolutely NO hearing loss. Diagnosis: Meniere's. I'm on dyazide, and planning to start verapamil. I'd start it today, but although the report said the rx was enclosed, it wasn't. Don you love that????? I can't take anti-nauseates due to severe restless legs syndrome (yay!), but nausea is the least of my problems. The good thing (?) about RLS is that I'm already off caffeine and alcohol, have been for years, so don't have that to contend with. Yes, I'm doing the low-salt diet too.

    I see the doc again tomorrow (Dr. Hicks - Midwest Ear Institute). I'm now much dizzier/unsteady than even two weeks ago. I *really* need to go back to work, for my own sanity!

    Any good questions I need to be asking Dr. Hicks???

    Thanks for being here.

  2. Linda1002

    Linda1002 New Member

    Re: Newbie - sort of.

    Hi Kathy and welcome -

    I would ask him why no hearing loss and why constant dizziness/unsteadiness or short bouts of spins (more like BPPV) instead of vertigo that lasts longer than 20 minutes and is episodic. I would also ask if the definition (symptoms) of Meniere's has changed. Really, if it was me, this is what I would ask.

    Hang in there. Keep taking care of yourself because that's the first and best thing we can do.
  3. TracyInIndy

    TracyInIndy Guest

    Re: Newbie - sort of.


    Welcome to the forum. I go to the Midwest Ear Institute too but I see his partner. Ask him about physical therapy. If your seeing him at the main office on Shadeland Ave in Indianapolis there is a balance therapy place right across the hall (The Balance Institute). That's where I went and they are really great! I spent 16+ weeks there last year, and they were really wonderful. They really did wonders for me. My constant imbalance was BPPV and they were able to help me.

    Good luck, Tracy
  4. mcfarkus3

    mcfarkus3 New Member

    Re: Newbie - sort of.

    Thanks, Linda and Tracy!

    Yes, I see him at the Shadeland Avenue office, so I'll be sure and ask about PT, too. Linda, great questions.
  5. saltlesstears

    saltlesstears New Member

    Re: Newbie - sort of.

    Hi McFarkus3 and welcome,

    Hope you find some more answers soon. I have no hearing loss and got the Dx of ATYPICAL Meniere's. I found the vestibular therapy helped me so much with the daily dizziness and disequilibrium. Maybe you would find it quite helpful also.
  6. Amethyst

    Amethyst She believed she could, so she did.

    Re: Newbie - sort of.

    Hi Kathy,

    Welcome to the forum.

    I used to experience non-stop dizziness as well and went through the VRT (physio) Tracy suggested. It made a world of difference. Just to note though, it did take a full two months before I started really seeing the benefit.

  7. mcfarkus3

    mcfarkus3 New Member

    Re: Newbie - sort of - update

    Thanks saltlesstears (love the name!) and Amethyst, too.

    I had the dr's appointment today. He wants to go the "shunt" route, he says he sees about 80% success rate with it in terms of getting rid of the dizzies. I've got mixed feelings about it. I keep reading that it's a placebo surgery. I really don't need that! But I trust him, so we'll try it.

    The bad news is he can't get to me until November 9th. I'm going to *try* to go back to work a couple of hours a day two or three times a week between now and then. I'm in a research lab, very busy, up and down all the time, so don't know how that will work. I get exhausted walking once around the grocery store on a "good" day! I'm very lucky, and get paid either way.

    Hmmm, think I just talked myself out of it!

    Thanks, everyone.
  8. feelbizarre

    feelbizarre New Member

    Re: Newbie - sort of - update

    If you go the shunt route, I hope it works out for you. doesn't sound like a bad idea if they have found increased fluid through testing. now if they didn't I would question that.

    So did you go to work?
  9. mcfarkus3

    mcfarkus3 New Member

    Re: Newbie - sort of - update

    Nope - not yet!javascript:void(0);
  10. Robyn

    Robyn Russell the Wombat

    Justed wanted to welcome you to the forum Kathie. :)
  11. mcfarkus3

    mcfarkus3 New Member

    Thanks, Robyn.

    The verapamil is working wonders for me. I'm still somewhat dizzy/unsteady, but the brain fog is mostly gone. Wow. I feel so much better.
    I'm thinking MAV, related to the migraines I had as a teen (thought I outgrew).

    Just an update. Thanks for reading, and any advice you have is very welcome. Many thanks especially to John of Ohio, I think I have to go online now and order at least the bioflavonoids!
  12. Robyn

    Robyn Russell the Wombat

    Kathy, I was diagnosed with Meniere's a while ago, but my symptoms just didn't quite fit the typical Meniere's ones. So, after about a million or so tests, both my ENT and doctor agree that it is not Meniere's but MAV and have me on a course of meds that really do seem to be helping. I hope that the Veripamil keeps working its magic on you and you continue to feel better.
  13. dizzychick

    dizzychick New Member

    Kathy, what is MAV? I am in the same rocky boat, no doctors know what to do with me and are running out of ideas as to what it could be, although they are leaning towards Meniers, but have not had an official diagnosis yet. Maybe it is this MAV that you speak of? Any ideas? Severe spinning feeling, vision blurred, totally off balance, some headaches are now starting, I also have a starnge feeling that in my left ear, if laid on wrong during the night, I wake up with severe pain in that ear, almost can't lift my head! Thanks!

  14. feelbizarre

    feelbizarre New Member

    Hi Erin,
    Here are some sites to look at for MAV which stands for migraine associated vertigo:

    There is no specific test to diagnose if you have MAV. They typically go by history, symptoms and if you have any improvement of symptoms with migraine preventatives or treatments. I have MAV along with other problems.
  15. thornapple

    thornapple New Member

    verapamil does something besides lower your blood pressure and make you constipated as heck? HOW LONG DOES IT TAKE? I've been on it since the second week of August and those are the only effects I have seen; my symptoms are worse than ever.

    And what dose are you on--and type?
  16. Shannon

    Shannon New Member


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