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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? 

0 likes, 61 replies

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  • laurence76206
    laurence76206 carina62

    Posted

    Hi Carina,

    I have exactly the same symptoms as you.  When walking I feel like I am going over to the left and I feel very lightheaded and faint some days with weak jelly legs.  I have been diagnosed with VN (14 months agon) but have also been told that I am probably suffering migraine alongside this.  My consultant has prescribed Amitriptyline to help with the migraine and tension and stiffness in my neck and shoulders, these will also help with my poor sleep and dizziness.  I have started on 10mg per day which will increase over three months to 30mg.  Hopefully I will start to feel some improvment but will reserve my judgement until I have been on them for 3 months.

    Like you I do wonder on occasions if the diagnosis is correct, it is interesting to hear you mention Parkinson's and MS, my older brother has just been diagnosed with Parkinson's so it is in my family.

    Anyway, hope you begin to feel some improvement soon

    Best wishes

    Laurence

    • laurence76206
      laurence76206 Gilly_flower

      Posted

      Hi Gilly,

      Yes I take 10mg in the evening at around 8pm.  I have been taking them for 2 weeks without any adverse affect, they may even be helping a little.  I won't know for sure until I am on 30mg by month 3.

      I tried everything else but nothing worked except Diazepam but they don't like prescribing that due to the addiction they can cause (although the odd 2mg once in a while would do no harm).

      Hope they work for you, like I said I am reserving judgement until month 3.

      best wishes

      Laurence

       

    • Gilly_flower
      Gilly_flower laurence76206

      Posted

      Hi Lawrence , I to have found that diazepam is the only thing that has help but like you said they don't like prescribing it , ad it's addictive , but just seem to slow down this all feeling in my head , and I don't feel like I'm moving all the time 
  • carina62
    carina62

    Posted

    Yes I get these symptoms all the time.  I will see how it goes with my nortryptyline medication for the next few months and if I feel the need to go back to my GP then I will do.  At first, before being referred, I was put on Stemitil (for vertigo) and then when that didn't work I was put on amitryptyline which didn't work either and gave me horrible side effects (horrible nightmares and difficulty waking up in the mornings, it's a sedative and anti depressant).  
  • carina62
    carina62

    Posted

    Please keep me all updated how you all feel from time to time and how bad your symptoms get and I will do the same.  I went for a short walk yesterday and was fine until halfway through the walk I started to feel off balance etc that's why I think sometimes that it's more of a balance issue than migraines but I think one of these days soon I'll make an appointment with my GP or maybe write a letter to the consultant that saw me to air my concerns and see what they say.

    i've also thought it could be as simple as a sinus problem as some days I have a pressure on my forehead and feel blocked up but I wouldn't have thought this would give me the symptoms I get.  I'll go for another walk later today and will take note of how I feel by the end of the walk and let you know.

    This might be something that will get better with time or something we have to live with and manage but I have other health issues too without having to cope with this one :-(

    • michelle_05599
      michelle_05599 carina62

      Posted

      At present I'm debating going into town as I need lots of things for the children for holiday, iknow if I walk through the shops with my husband I will panic and need to sit on the floor it's that bad 😔 I have borrowed a wheelchair for holiday I'm only 32 so feel a bit silly x
    • Gilly_flower
      Gilly_flower carina62

      Posted

      Hi , please keep in touch as well , this is such a horrible illness , and unless you have had it , people don't really understand how hard it is dealing with it , it's my sons birthday today , and were of out for lunch , but even that is hard as I feel so unsteady , even when I'm sitting , especially under lights , I sort of feel detached from everyone ,it's like I got all this pressure in my head , the doctor blames anxiety , but that a result of this awlful feeling not the cause , 
    • anne05147
      anne05147 Gilly_flower

      Posted

      Hi Gilly it might sound daft but maybe some sunglasses may help with bright lights or tinted glasses. It's worth a try anyway.  Best wishes.
    • rita52071
      rita52071 michelle_05599

      Posted

      Hi Michellle...as far as I can remember I havent spoken to you for awhile......What are the drs doing for you????
    • michelle_05599
      michelle_05599 rita52071

      Posted

      Hi, I'm gettin referred to see a specialist after my holiday, it's beyond a joke how doctors leave it for this long, my life has been on hold for near enough 4 month now as I bet it has been for you and others, I'm not the same person anymore I loved life been out and about doing day to day things I can't even walk in my children's playground anymore let alone swimming, Park ect, I feel trapped and nothing is helping x
    • rita52071
      rita52071 michelle_05599

      Posted

      i find it crazy too.....All they say like someone else said...well...it could be this ......or it could be this...or.......I did go see an eye doctor that specializes in vertical heterophoria....she said I have a slight vertical imbalance......so i am waiting for my glasses....I want to get off of Depakoe...I have been on it from the end of September 2015.........almost off of gabapentin.......which I am so happy about.......I know exactly what you mean when you say your life hasn't been the same....I am doing much much better but I still get dizzy walking in malls....just using computer or sitting......in my opinion something is still not right............
    • michelle_05599
      michelle_05599 rita52071

      Posted

      Iknow I could scream at the top of my voice YOUR NOT LISTENING, don't mean to sound nasty but I'm glad there is someone out there who knows exactly what I'm going through, I feel alone as though nobody understands even though my husband is so supportive in my mind I still feel as though I'm being a pest and feel as nobody believes me it could be all in my head, you need to go through this before you can truly understand x
    • rita52071
      rita52071 michelle_05599

      Posted

      Michelle I agree with you......You do need to go through it to completely understand..........it sounds like you have a wonderful husband that cares deeply about you........and no its not all in your head.......I know you heard this before but one day at a time thats all we can all do..........
    • dee50000
      dee50000 michelle_05599

      Posted

      I know what you mean! I have had close relatives tell me "Oh we all get dizzy sometimes", and "Of course things move up and down when I move my head", and "I can't look certain ways or I'd get diizy too"!

      Noooo, it's not like that. I've had minor things like that before in my life, but NOTHING is like this. Nothing. I feel like I am walking drunk, and when you have test results to show you have a dysfunction, and they still trivialize your symptoms, I just don't know. They truly have to experience to know what it's like. Doctors included! 

      Sometime look up "oscillopsia" at youtube... it's the 12th video down, after the ads. THAT's what it's like. Tell me this is normal!

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