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  • Should have seen a neurotologolist sooner!

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    Old 08-18-2014, 07:19 AM   #1
    lovineachday
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    Smile Should have seen a neurotologolist sooner!

    Hi guys! I used to post here 3-4 years ago. My story, readers' digest version.

    Four years ago, I was at the cottage when I thought the floor was slanting. The next day I felt nauseous and awful, dizzy, etc. So began a very long awful journey for me, from which I'm long mostly recovered. I was diagnosed by an ENT with VN, although it did seem like he was guessing. I was given VRT to do and just tried to keep on swimming. This past year or two, however, I've had a few stints with actual vertigo (never had that with the so called VN), where I'm down and out for a few days but it goes as quick as it hits me. Once was when I suddenly sat up in bed, which to me screamed BPPV, but it was never cut and dried, as my sxs didn't perfectly match up. Plus I have migraines which complicates things.

    Anyway, I finally asked my dr to see a neurotologist. He was SO great! Right away, he said that what I had initially didn't seem to present as VN. WHAT??? For four years, that's what I thought I had!!! He suspects I have a misplaced crystal in a less common part of the inner ear (I forget half of what he told me) and I am doing testing in November.

    Sharing for two reasons....
    1. Way back when, posters on this board said to see a neurotologist. I should have! I shouldn't have banked on it not lasting long, and I should have pushed for one when no one knocked on my door offering an appt with one. I had to look one up on the internet and then ask my dr to refer me. It was almost a year's wait, but I'm so glad I got this going.

    2. The doc wrote a couple things down in the "possible diagnosis" section of the sheet... if anyone knows anything about these, please let me know! Otolithic dysfunction and Bilateral HUV Impament (sp??? Dr's writing!)

    Thanks for reading! Inner ear issues suck and I wish non dizzy days for all.

     
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    Old 08-18-2014, 10:37 AM   #2
    biteneck
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    Re: Should have seen a neurotologolist sooner!

    Hello!
    Yes, I remember writing to you. I am still having problems. My neuro-otologist told me in December that he thinks I have MAV. Even though I was told I had 25% unilateral loss in May 2012. Oh, I just don't know anymore. Anyway, he has me taking Klonopin since December 2013. I think that this medicine has made me less tolerable to things. For example, last October we went to Disney and I rode Dumbo ride and the carasoul and felt off a little but nothing like I did in June when I rode the carasoul with my little girl at a local carnival. I was so scared and dizzy. Thankfully it didn't last too long, but I was find at Disney last year before started this medicine. Anyway, I'm glad you finally are getting some answers. My worst things are the dizzies and in store I still feel like I'm getting that out of body experience and it's quite scary. It's almost like you feel you are slowly going to pass and bring on panic for me. Have you felt like that at all?

    I'm not driving still.

    Please keep us updated on how things are going for you. Are you on any medicines currently or did you take anything in the past?
    Thanks and please keep in touch.
    Nicole

     
    Old 08-18-2014, 11:01 AM   #3
    biteneck
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    Join Date: Mar 2012
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    Re: Should have seen a neurotologolist sooner!

    Hello!
    Yes, I remember writing to you. I am still having problems. My neuro-otologist told me in December that he thinks I have MAV. Even though I was told I had 25% unilateral loss in May 2012. Oh, I just don't know anymore. Anyway, he has me taking Klonopin since December 2013. I think that this medicine has made me less tolerable to things. For example, last October we went to Disney and I rode Dumbo ride and the carasoul and felt off a little but nothing like I did in June when I rode the carasoul with my little girl at a local carnival. I was so scared and dizzy. Thankfully it didn't last too long, but I was find at Disney last year before started this medicine. Anyway, I'm glad you finally are getting some answers. My worst things are the dizzies and in store I still feel like I'm getting that out of body experience and it's quite scary. It's almost like you feel you are slowly going to pass and bring on panic for me. Have you felt like that at all?

    I'm not driving still.

    Please keep us updated on how things are going for you. Are you on any medicines currently or did you take anything in the past?
    Thanks and please keep in touch.
    Nicole

     
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