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2 years in can anyone help?!

Posted , 6 users are following.

Herindoors64
Herindoors64

Hi I am based in uk. I went down with spinning vertigo 2 years ago - it came from nowhere ( I was fine day before) 

I won't go into all details ( anyone who suffers will know) but main symptoms are dizziness, vertigo, light headed - no balance.

I get dizzy when I lie down, roll over, get up - in fact an attack can come on any time! 

been to ENT ruled out anything to do with ears

been to rheumatologist - no result

under neuro - had tilt table - negative result

had autonomic dysfunction testing - waiting for results

epley performed numerous times - all failed

i don't know what or where to go next just wondered if anyone had any thoughts with their own experiences? I am beside myself, no life, doctors are useless - keep mentioning anxiety to me - I could scream of course I am anxious as it goes hand in hand with this condition. 

Thanks 

S x

0 likes, 26 replies

26 Replies

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  • gillian76726
    gillian76726 Herindoors64

    Posted

    I Would do some research of,your own.  First off look at the Veda wbebsit.vestibular  Disorders Assoc. They Have a wealth  of info all,things dizzy etc
  • iris46
    iris46 Herindoors64

    Posted

    Sorry to hear this Sarah......I know exactly how it feels.  I get up each morning with what seems like a dreadful hangover head.  I have vertigo, tinnitus, my head feels spaced out, full of cotton wool.  I feel as if I'm standing outside the world, looking in....my brain is in a dream world, but I don't like the dream.  I had an MRI scan last Friday, so awaiting results.  It's Monday now, and I've heard nothing, so hoping no news is good news!

    • Herindoors64
      Herindoors64 iris46

      Posted

      oh iris I do hope you get some news. I did have two MRI scans both were negative for me. Same as me can barely walk today. Do you manage to work? I went part time last year but I can hardly manage that xxx
  • eleftherio33095
    eleftherio33095 Herindoors64

    Posted

    Positional vertigo.  Benign paroxysmal positional vertigo appears to have been ruled out (failed epley).

    Therefore, you need a brain MRI for two reasons:

    1) to rule out a central cause of positional vertigo.

    2) To rule out neurovascular compression of the eighth cranial nerve (vestibular paroxysmia).

    I am surprised that you have not done this yet.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiology

    Fellow of the European Academy of Neurology

    • iris46
      iris46 eleftherio33095

      Posted

      Thanks for the info! I too am suffering. Woke up with BPPV the same day as I was diagnosed with chest infection. My doctor tried Epley twice, producing nystagmus, but still got vertigo, along with tinnitus, fatigue, sensitivity to noise (even a text notification), confusion, and waking up with a hangover head without the alcohol. I had an MRI head scan Friday 24 June, and got appointment with ENT in two weeks. Any thoughts plz?
    • Herindoors64
      Herindoors64 eleftherio33095

      Posted

      Thank you I had 2 MRI scans both negative. I paid once but I can't afford it anymore spent £3k on private treatment. They haven't even mentioned positional vertigo or compression of cranial nerves. Funnily enough I now have neck pain but only when I press my neck at the back. I get terrible brain fog so sorry forgot to mention the MRI in it. I am so bad today doctor is coming to see me at home - I can barely walk. The scans were a year and 2 years ago - you are very kind xxx

    • eleftherio33095
      eleftherio33095 Herindoors64

      Posted

      I would like to see the Brain MRI if possible.  The most recent one at least.  Do you have it electronically, on DVD?  Can you send it here?

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology.

    • Herindoors64
      Herindoors64 eleftherio33095

      Posted

      No I don't have it and I doubt they will let me get it! They have just prescribed cinnarazine 2 tabs X 3 times per day. Told me have to wait for results of autonomic dysfunction testing. Your are so kind. Where are you based if in uk do you do private consultation? X

    • eleftherio33095
      eleftherio33095 Herindoors64

      Posted

      I am in Cyprus, sorry.  

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • Herindoors64
      Herindoors64 eleftherio33095

      Posted

      If I can get them I will send them to you. I can't tell you how much I appreciate your support - Sarah 

    • gillian76726
      gillian76726 Herindoors64

      Posted

      If you are in UK, you can get your xrays, but would probably. Have to,pay something, not sure how much.
  • emma93780
    emma93780 Herindoors64

    Posted

    I feel for you I really do, it's been since September 15 for me just started all of a sudden when I went to get up off the sofa when my son was 5 months old, I couldn't focus and I was so off balance it was unreal, it completely made me panic I thought I was dying!

    I've had 2 clear ct scans, had a private mri Jan this year which was clear, seen ent, had echo's, 24hr holter, been to a balance clinic, tried all the drugs under the sun, recently saw neuro who thought it could be vestibular migraine as I do get headaches so going to try different meds and refer me to a hearing physician as they are best to deal with dizziness apparently! I to am in the uk and don't have an endless pot of money to through at different docs but like you had so many tests but no conclusive results!! I've had scans on my neck, accupuncture, physio and seen a chiro lol I feel like I'm driving myself mad sometimes! They to have played the anxiety card and yes of course I'm anxious because I'm dizzy! I get a horrid pain in one spot at the back of my head to which they think is tension!!!! Yes because I'm stressed lol

    I got my mri results on a dvd but never looked at them, I have tmj to which could be contributing to the tension but I doubt it's making me dizzy as I've had it 6/7 years xx

    • Herindoors64
      Herindoors64 emma93780

      Posted

      Hi Emma you poor thing how on earth do you cope? I feel lucky to have only my husband to worry about. Very similar to me. I am under balance Clinic in Leicester now - got to have heart scan think they said echo? Had the 24 hour monitor and was told all ok. However today another doctor told me it was given very different readings! My blood pressure was 90/49 today. Bloody nightmare getting through to them about anxiety. Must admit I said to the doctor today "you think this is n my head " and you don't believe me! Sorry what is tmj? Got ruled out for vestibular migraines although not convinced xxx

    • emma93780
      emma93780 Herindoors64

      Posted

      I had the heart scan all was normal with that, bp has always been normal to!

      Tmj is a jaw joint disorder, basically I clench my teeth in my sleep and during the day which causes a lot on tension in my neck, face etc, I have to wear a mouth guard to be (attractive I know) lol I am going to have Botox in my muscles to see if that helps with the tension as they think this might be causing some of the dizziness etc!!

      I definitely have bad headaches and yes I am anxious but because I feel so crap all the time my head feels like it will explode some days as it gets so full of fear and stress, I've to children under 5 and it's weird as when I was pregnant I had no symptoms at all, Neuro said something to do with pregnancy hormone wish they could bottle that and sell it if that's the case.

      Gets you down though doesn't it as you just don't know who to believe as no-one can tell

      you what's going on other than they don't think it's serious, I'd love for these people to live a day of life in our heads!

      My doc I have to say is doing loads and he is really good as had all these tests to rule out the nasties but it doesn't stop you stressing all the time xx

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