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MRV (migraineous related vertigo)

Posted , 11 users are following.

carina62
carina62

After lots of tests including balance and hearing tests and an MRI scan last year, I was diagnosed with MRV and take 30mg Nortrtptyline daily.   Despite this I still don't feel 'right' and not sure what to do.  My consultant discharged me.  My main problem is when I'm walking, I can feel that I'm off balance, being pulled to one side (usually the left) and I sometimes fear I'm going to faint or collapse which then causes me to panic and start getting palpitations.  I can't think what is causing these sensations.  Is there anyone who has similar to mine? 

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  • Gilly_flower
    Gilly_flower carina62

    Posted

    They have suggested this could be my problem , but do feel of balance all the time , I also got such a heavy head and lighting makes me fill of balance , like I'm on a trampoline , 
  • anne05147
    anne05147 carina62

    Posted

    Hi Carina, i have the same diagnosis alongside BPPV.  I am on Nortriptyline 10mgs which has really helped me but my consultant said i need to continue taking the meds possibly for another 9 months until my brain heals.

    It may take some time for your brain to adjust to the damaged.  He said if i had been diagnosed sooner, rather than the 2 years it took to be diagnosed he could have helped me get better more quickly.  I don't know how long it took you to get your diagnosis but it will possibly take time for adjustments.  All best wishes.

  • michelle_05599
    michelle_05599 carina62

    Posted

    Hi I'm exactly the same tho still haven't been diagnosed, it's been going on near 4month now, is anyone's problem there all the time? Like everyday, I'm at the end of my tether now still haven't been out on my own, and my holiday is fast approaching 😔 (Wednesday) I have borrowed a wheelchair as iknow I will be unable to walk or worse still stand in ques, I'm really worried as there will be hundreds of people there can't stand crowds makes me feel alot worse yesterday I started to feel really poorly shaking, high temp think I'm getting a bug which has made my off balance and dizziness worse,
    • Gilly_flower
      Gilly_flower michelle_05599

      Posted

      Yes , it's there 24/ 7 , for me , though I have managed to get out on my own , a couple times last week , but it's so hard , I can't stand this feeling of being on a trampoline , everything seems of track , 
    • Gilly_flower
      Gilly_flower michelle_05599

      Posted

      Hi Michelle , was wondering how your feeling now , things are still hard for me , afraid I have had to pull out of my job now , although I know we have to work through this , my job is just to much , I'm looking after my granddaughters  couple days a week , as their mum has gone back to work after merger it's leave ,which makes me think of you with your children , it's very hard , but I'm just about manageing , nothing don't seem the same at the moment , so fed up with it , I'm doing vrt therapy , and now have to see a neurogist , but there s  an 18 week wait , all so frustrating , 
    • michelle_05599
      michelle_05599 Gilly_flower

      Posted

      Hi gillyflower so nice to hear from you, I'm sorry to hear about your job and the way you are feeling, 4 weeks ago I was diagnosed with pppd (not vertigo) I had brain scans and seen a neurologist he ruled out vertigo, I'm on citalopram and have been for coming on 4 weeks and do you know what they are actually starting to work, don't get dizzy anymore still abit anxious when I'm out but no were near as bad, I even went out shopping yesterday with my children on my own I can't believe it, hope you start to feel better soon keep intouch xxxx
    • pinky25194
      pinky25194 michelle_05599

      Posted

      Hi michelle

      Good to hear you're improving. I have been diagnosed with VN with PPPD. Can I ask you what mg of citalopram you're taking? I'm not on any medication for this. Do you still do VRT?

      Thanks 😊

    • pinky25194
      pinky25194 michelle_05599

      Posted

      Oh my goodness!! I need to get on these tablets!! 😀 fantastic to hear you're doing great x
    • michelle_05599
      michelle_05599 pinky25194

      Posted

      You can only try, first few weeks anxiety was bad and dizziness (all part of side effects) but then it lessens alot hope they work for you xxx
    • Gilly_flower
      Gilly_flower michelle_05599

      Posted

      Nice to hear from you , so pleased your feeling better , I am improving slowly , able to go out more on my own , but where I work , wanted me back 100 per cent , afraid I couldn't promise that ,what is pppd exactly and the meds , are they for the dizziness , I'm on no meds , my doctor just don't seem to be able to help me ,especially since my scan was clear , I just want to scream at him , it's the ent that has referred me to neurogist , because the bppv seemed to have settled , but still got so many horrible symptons ,x
    • pinky25194
      pinky25194 michelle_05599

      Posted

      I was diagnosed a few weeks ago and she told me to continue with VRT and wait to see her for a course of 8 treatments. Think consisting of CBT and breathing. She didn't mention tablets so when I see her I'll ask about what you're on. 😊
    • michelle_05599
      michelle_05599 Gilly_flower

      Posted

      Pppd is persistent postual-perceptual dizziness, look up symptoms, my meds are a ssris, which is known to treat pppd it's also for depression and anxiety, it's helping me alot, I've just came back from shopping again with just me and kids can't believe the difference xx
    • Gilly_flower
      Gilly_flower michelle_05599

      Posted

      Hi , thankyou , pleased you got on ok again today , I'm of to have a hair cut , can get their on my own now , so things have improved for me . Though it's slow , please keep in touch Michelle , so nice to hear from you , X 
    • michelle_05599
      michelle_05599 Gilly_flower

      Posted

      It was lovely to hear from you too 😊 just hope we both keep improving, it's nice to feel like the old me again thank you for getting intouch xxx
    • dee50000
      dee50000 michelle_05599

      Posted

      Can you tell me more about what PPPD is? I understand it starts from another vestibular problem, but does it show up in an audiologist's test, or is it just from your history? I am sure this is what I have. Thanks! Glad you are doing better with the citalopram. I am guessing it is anti-anxiety drug (altho I read that pppd is NOT a psychological thing, it's a PHYSIOlogical condition). Makes me mad people think it's all in your head (no pun intended!).
    • dee50000
      dee50000 pinky25194

      Posted

      Pinky, what exactly is PPPD. The dfinition is kind of vague. Did you get it after your VN and it is a separate condition from the VN? WIll it go away? VRT is not helping me.
    • michelle_05599
      michelle_05599 dee50000

      Posted

      Hi I'm not really sure what test will diagnose it, my neurologist diagnosed me, it's awful that's what I felt like that people just thought it was in my head I felt like I was going crazy, I couldn't stand crowds of people and use to avoid places like supermarkets and shopping centres, even school playground, and standing in ques, citalopram has helped me alot, sorry I can't be more of a help xxx
    • pinky25194
      pinky25194 dee50000

      Posted

      Hi dee

      I went to withington hospital and was given a diagnosis of VN with subjective chronic dizziness (another name for PPPD - persistent postural perceptual dizziness). As my symptoms have lasted for 18 months, I've developed anxiety and stopped myself from doing so many things. Reading up on it totally explained what I'm feeling like. I was told that my brain hasn't compensated yet so I still need to do VRT twice a day. I didn't have any tests to confirm this, just from an in depth history of symptoms. Have you had no improvement at all doing VRT?

    • dee50000
      dee50000 pinky25194

      Posted

      Thanks, no not one bit. I used to walk in the nicer weather, and that didn't help either. I've been doing the exercises for exactly one year, at home and also at PT at the balance center.

      Luckily, it doesn't stop me from going place. I just take my cane so people know to steer clear - lol. This afternoon I was shopping with a shopping cart and when I went over the entrance that had little grooves in it, it was so bumpy that I felt like I was on a rollercoaster ride. A very odd sensation. With me, it is my eyes that cause this, they think. Bad V-O-R reflex. Poor vestibular-eye thing in the brain. Those are the onluy answers that I have ever gotten. Thanks you and good luck!

    • dee50000
      dee50000 michelle_05599

      Posted

      Thank you... shopping does not seem to be a problem for me. It's there wherever I am, no matter what I do, 24 hours a day. Thanks anyway... and continued good luck!
    • pinky25194
      pinky25194 dee50000

      Posted

      Have you had any balance tests? Where do you live? Has anyone told you why you might not be improving. Apparently, PPPD is when you've compensated but the dizziness still carries on. Maybe you could find out more or mention it when you're next seen. Maybe citalopram could work for you?
    • dee50000
      dee50000 pinky25194

      Posted

      I've had all the balance tests, including the posturography one where you stand in the "closet" and the walls and floor move. Nothing ever determined, she just kept testing me and seeing if I had improved. I scored a 34%. I live in the US (Upstate NY). No explainations, no diagnosis. Will ask when I have the next appointment, but they are 2-3 months away. Yes, Citalopram (an SSRI) might help sounds like. Is it just an anti-anxiety drug?
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