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Anyone else fed up trying to find a cause of their dizziness?

Posted , 12 users are following.

emma93780
emma93780

I have had dizziness since September 15, started off with what they thought was a bought of Labrythitus and then been diagnosed along the way with pretty much lots of different things while they try to work out what's the cause?!

Had so many tests tried all the meds and still no closer to the cause! Apparently it's vestibular migraines (silent ones most of the time), all my tests are clear apart from I have hearing loss in both ears but it's wouldn't effect my balance or cause dizzy spells!

Anyone else fed up of trawling the internet looking for answers or trying to find someone who has the exact same symptoms so they can just sympathise or relate to how you are feeling.

I honestly don't know where to turn or what to try next, the doctor have basically said they just don't have the answer which is upsetting as I went from a healthy ish 35yr old to a blubbering anxious mess overnight.

Do I believe the doctors in what they say...! Nope not one bit, do I try to self diagnose? Absolutely all the time, I have managed to convince myself I have got everything from cancer to diabetes and yes I am still here 1yr later and still breathing so I should accept what they say but my mind is telling me nope you have something more serious as you shouldn't be feeling this way for this length of time 😢

Anyone else relate? Cc

0 likes, 19 replies

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  • eleftherio33095
    eleftherio33095 emma93780

    Posted

    I do not remember if you have posted here before.  What did the hearing test show exactly?  At what frequencies is the loss recorded?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • emma93780
      emma93780 eleftherio33095

      Posted

      I have posted before yes! I have a cookie bite in both ears not sure the exact frequency!!
    • eleftherio33095
      eleftherio33095 RD13

      Posted

      Can you provide me with the exact results of:

      Audiometry

      Caloric tests

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • eleftherio33095
      eleftherio33095 RD13

      Posted

      Your audiogram is normal, and so that rules out labyrinthitis or Meniere's disese.  I understand that your brain MRI was read as normal.  I notice in the ENG report the mention of abnormalities with smooth persuit.  Has this been commented on by any of your doctors?

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • RD13
      RD13 eleftherio33095

      Posted

      No, ENT didnt bothered to discuss this 'Abnormalities with smooth persuit'.

      he just told me a very little BPPV on left ear and to see PT. PT tried to see my eye movement and observed some movement onleft eye but that was less than second so it was very very minor. He performed epley maneuver two time and later I didnt had any eye movement. Then he focused on my eyes and he suspect I have VOR, gave me gaze stabilazation excersice which makes me more dizzy so I hardly do it.

       Whats smooth persuit? can be this related to that?

      Also attaching my brain MRI report. Let me know if you want to see any other report.

       

    • eleftherio33095
      eleftherio33095 RD13

      Posted

      The deficit in smooth persuit would relate to the brain.  However, sometimes such findings can occur if there is poor concentration from the patient.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

  • Wobbly_1
    Wobbly_1 emma93780

    Posted

    I am taking Nortriptyline for vestibular migraine have you been on them
    • emma93780
      emma93780 Wobbly_1

      Posted

      Yes I have tried them, did nothing for me, I'm taking sertraline and propanranol as the dizziness has given me anxiety! I have been prescribed Topamax but not taken it year as it's got some nasty side effects x

  • anne05147
    anne05147 emma93780

    Posted

    I doubted very much when the consultant told me my balance, vision was being affected by silent migraines.  He was right, I was wrong.
  • patty818
    patty818 emma93780

    Posted

    Hi Emma;

    This is definitely one crazy disorder.  I know exactly how you feel, I have spent since last July 2015 looking for the reason why and how.  I was a complete wreck with anxiety up until about 2 months ago and I finally had to accept that I have MAV,  it took me forever to accept this, but when I did and I started focusing on not paying so much attention to the dizziness, it has started to let up some.  I do have bad days still and the anxiety comes along with it, but now I just try to be nicer to myself and rest on the bad days, if it gets really bad I take a xanax to calm my nerves down.  I am pretty much at baseline on most days which i can handle.  I have just recently been given propranolol to take, 10mgs at night, i started with 5mgs because i am so worried about the heart effects,  I forgot to take my pill last night, I've only been on them 3 days so missing that one I don't think is the end of the world.  I noticed you are taking propranolol, is it helping you at all?  I've been feverishly trying to figure out what it does for mav, I see it helps migraines but no mention anywhere about mav.  

    I think your right that the docs really don't know whats going on with us.  I think the ear system and brain is to complicated for them to have a straight answer. I tell myself if there was something really bad happening they would know by the symptoms that we give them.  Anxiety can cause the mind to think all those "what if" thoughts and make us crazy.  

    I hope you feel better and if you want to talk, I'm hear anytime.

    Hugs

    Patty

  • Waffalobill
    Waffalobill emma93780

    Posted

    Only a year? Have had it every day for 10 years. Had tests done multiple times. Get hearing test tomorrow and results of VNG as well. You want them to find something so you have a answer. Same time you dont want them to find anything bad. One doc pushing you to go see another doc and having him say all tests are normal. Meanwhile boss calling the house wanting to know if your coming back to work. Wife trying to pay bills with no money and medical bills piling up for apps and tests that showed "nothing wrong". They got authorization from insurance company for my MRI which i had done. Then i got a letter saying it was authorized but that doent mean they will pay for any of it. I can so relate to what your feeling. Tho it probably doesnt help you much. Started PT and it hit me even harder. Way worse than ever before. Called to tell them ,cause my therapist said call if any problems, and its her day off. Someone will call you tomorrow. Meanwhile about all i can do is sit here and stare at the wall. Noone understands what its like cause they never had it. Sometimes i wish everyone in the world would have this for one day just so they could understand what we deal with for years.

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