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Wrong diagnosis??

Posted , 9 users are following.

steve93849
steve93849

After being diagnosed with vestibular neuritis im starting to doubt the diagnosis.

i was making steady progress but have taken a massive step back this week feeling dizzy as hell when im moving about im startin to feel im on the verge of another attack of BPPV or vertigo.

surely you cant go backwards with this as i feel like ive gone back 3 months

considering having the epley performed again as i cant take much more of this hell, i still feel i have something different to what they said its just a gut feeling i have 

Anybody else made progress then gone backwards ?

 

0 likes, 43 replies

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  • kate47167
    kate47167 steve93849

    Posted

    Hi have been dizzy for 6 yrs and de compensation is all part of it I was 90% dizzy free for 2 years but not due to so much going on in my life I am back dizzy 24/7 and my bbpv is back to

    It's heart breaking for me to go back this far but there is no choice but to carry on .

    Epleys will make u feel awful I had a 7 hr drive yesterday to have one and check out what's what and today I feel like I'm on a boat I feel sick feel just awful.

    So please if u can keep moving let your brain keep taking the signals and keep fighting

    • vanessa69
      vanessa69 kate47167

      Posted

      Well this is good to kno; just hope it goes away eventually
    • cassie21714
      cassie21714 vanessa69

      Posted

      I have had this issue for a year now and I have seen improvement so you should get better it just takes a lot of time.
    • vanessa69
      vanessa69 cassie21714

      Posted

      Ok so I'm gonna start doing the exercise again and see.thanks for the advice
    • steve93849
      steve93849 cassie21714

      Posted

      why is it i always feel worse in the morning and seem to pick up as the day goes on?
    • cassie21714
      cassie21714 steve93849

      Posted

      This is common in vestibular neuritis patients. I have the opposite issue. When I wake up I feel slightly dizzy but towards the end of the day and especially at night when I'm starting to feel tired and worn from all the day's activities I start to feel worse. But there are many vestibular neuritis patients that complain it is worse in the mornings
    • marion50354
      marion50354 cassie21714

      Posted

      Mine is a "positional" vestibular neuritis. Therefore, time of day doesn't matter. It's where my head is positioned. So if I lie down flat on the physical therapy table, my head spins. When I get up, it does too. The two other positions where I can get a "spinning head or room" are when I look up and when I turn to one side, especially if I do it quickly. As I wrote before, I am going to a hospital to have vestibular exercises done on me, and to teach me how to do them myself (which I've been doing with the Epley maneuver every day--which helps so much.)
    • marion50354
      marion50354 steve93849

      Posted

      It could have something to do with how you get out of bed; whether you rise up or turn quickly. It's important to sit on the edge of the bed for a moment or two to get your bearings.
    • vanessa69
      vanessa69 marion50354

      Posted

      Yes I do the epl ey. Maneuver everydat and it does help.i also noticed if I do eye excerise it helps too $ best of luck to you
  • vanessa69
    vanessa69 steve93849

    Posted

    Just hope this feeling goes away soon cause I had it for 4weeks now and had test except a scan but they don't think I need one.hooe ro feel better soon!
  • aveline
    aveline steve93849

    Posted

    If you think it's something else, it may be helpful to keep a journal of your symptoms and conditions. I worked with someone who has Meuniere's and when the pollen was peaking, I'd get worse from fluid/allergies but relief when it rained (I have BPPV). However he was fine until the rain, which set off his symptoms and they were worse than mine.

    As others have said, epley and therapies do help, but you have to stick out the worst of it to get there.  I found relief from a few months of accupuncture. When I slid back again, I was pregnant and didn't want accupuncture at that time (I moved away from the woman who did mine and was too afraid to try someone new). If I have another slide, I'd find another trained professional in accupuncture, but that's just my experience.

    See if you can connect the dots for your own good and bad days/weeks along with your doctor...or a new doctor. I wish you well!

  • pauline59158
    pauline59158 steve93849

    Posted

    Hullo Steve

    Is Epley the right thing to do?  Reading other folks comments on this Forum, a lot of them tend to start, it makes them feel so bad, they give up. Was your diagnosis by a Dr or a therapist?  If the latter I would strongly recommend going to your GP.

    Best wishes 

    Pauline

     

  • steve93849
    steve93849

    Posted

    i assume the more you try to do the more your brain has to do to unscramble all the mixed messages its gettin.

    Its weird i have never had balance problems with this except when i had my 5 or 6 bouts of room spinning vertigo where my balance totally went for a few minutes .

    im just prayin i dont get the vertigo or BPPV back again 

    • steve93849
      steve93849

      Posted

      Is BPPV caused only by the crystals in your inner ear or is it caused by other things aswell
    • gillian76726
      gillian76726 steve93849

      Posted

      Yes BBPV is connected with the crystals in vestibular system.  I have been told I do not have BPPV as I do not have the crystals.  I,am Also seeing a Neuro Otologist, but they are not always right!
    • kate47167
      kate47167 gillian76726

      Posted

      A dixi hall pikes test will tell u if u have bppv as your eyes spin but you don't feel it.

      Many vestibular symptoms over lap the thing is with bppv its positional but it then causes the swaying, bobbing, etc I am finding it hard to lie down at the moment as feels awful

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