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just wondering---

Posted , 6 users are following.

michelle10559
michelle10559

So as I read it has made me think do all of us (dizzy) for no reason have some type of rare disorder? Most of us are coming back negative for the really bad stuff so maybe it is something that hasn't been studied---I know there's an answer out there I just hope we all find out soon---I am currently waiting on ENT test results appointment on Monday--- I'm so tired of this and just want my life back ♡♡♡

2 likes, 11 replies

11 Replies

  • nikki1978
    nikki1978 michelle10559

    Posted

    Hi Michelle,

    ​I have had problems since March 2012.  I saw a neuro-otologist and a neurologist.  I have been diagnosed with vestibular neuritis.  It seems that when I had a sinus infection at the end of Feb. 2012, a virus affected my inner ear.  Nothing is known to fix this.  They say it just has to get better with time.  It seems most dizziness is the inner ear.  I hope you get better help then I did. 

    • michelle10559
      michelle10559 nikki1978

      Posted

      They told me that in 2007 and it still hasnt-- these tests they ran made me very dizzy and I just hope they show something---
    • michelle10559
      michelle10559

      Posted

      They told me it would get better with time in 2007
    • nikki1978
      nikki1978 michelle10559

      Posted

      Hi Michelle,

      Were you sick before your dizziness started? I had the sinus infection, then right after that, bam, all this crazy stuff with dizziness, feeling detached and disoriented in stores and restaurants. Has it gotten any better at all since 2007? Mine goes up and down. Never been normal yet again. What did the vestibular tests show?

  • rockymama
    rockymama michelle10559

    Posted

    I have mal de debarquement. Feel like I'm always moving. Rare condition. I had to diagnose myself. My ENT had never heard of it before.
    • patty818
      patty818 rockymama

      Posted

      I'm always moving to. My ENT says I have MAV and a bit if mdds. Are you taking any meds for it? If you don't mind I have a lot of questions maybe you could help. Do you ever feel like you falling when standing and sitting? Do you have a hard time bending forward? Do you feel like your moving in a rocking motion or like your bobbing around? Do you feel like your sinking when sitting? Are showers hard for you? Do you have neck head and upper shoukder pain? Do you have anxiety and or depression? Do you ever feel like when you sitting like at a table you need to hold on to it?

      Sorry for all the questions but I'm trying to understand it. I'm so sick of waking up everyday and the first thought is what will happen today. Everyday it's different the dizziness is not always the same.

      I'm afraid to try the meds, my doc gave me nortriptyline, but I took Amitripyline and had increased anxiety that was awful so I'm afraid the nort will do the same. I don't know what to do anymore.

      Thanks for your help and I'm sorry you have this

    • rockymama
      rockymama patty818

      Posted

      So yes, yes, yes....to all. We have the exact same symptoms. I feel better when riding in a car so I've been told I have MdDS. I've been to Dr. Cha who is great by the way. She's working on developing a TMS protocol for MdDs. Anyways I take Effexor, lowest dose and I was in Amitriptyline. Amitriptyline made my symptoms worse at first but then I felt better. Was tired too at first but that went away. I went off the amitriptyline so I could participate in a clinical trial w Dr. Cha.

      By the way, clonazepam is helpful when you really need something or have an event and don't want to worry about being overly dizzy. Diazepam is good for travel.

    • linda40217
      linda40217 rockymama

      Posted

      Hi Rockymama,

      I've had symptoms of mdd for years (started as a teenager) I'm 51 now. About five years ago I ended up in the ER for vertigo. Ever since it has become more apparent (self diagnosed also) that I'm also stuck in the hell of swaying and the feeling of falling/sinking.

      I've been to several doctors ranging from an ENT,PT, neurologist, etc.

      Anxiety is on high and I'm desperate to find relief. I just wanted to let you know you're not alone...or maybe I'm writing to remind my own self. rolleyes

    • linda40217
      linda40217 patty818

      Posted

      I unfortunately have a lot of these exact symptoms. Haven't been diagnosed. The car rides are fine, but it's the after getting out and walking about that throws me. rolleyes

      It's Is there any relief???

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