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vestibular neuritis/cochlea/vestibular nerve stroke

Posted , 6 users are following.

june24146
june24146

Hi I had a stroke in cochlea vestibular nerve August 2013 causing me total deafness in left ear and balance problems. Doctors cannot tell me why it happened.  I had rehab, went home felt ok but reality hit when I started to resume the normal activities of life.  Live with continual pressure in head, finding difficult in shopping centres, moving my head or turning quickly .I have had mri's, infra red video goggles, test for BPPV - do not have that - thank goodness.  Finddifficult travelling in car, going over bumps.  I can still drive. I still work as my job is sitting mainly.  The most difficult thing is,  as I look well my family do not take my condition seriously and I am really struggling with that and have bouts of depression and stress and anxiety make my head much worse.. Found this site and it was good to see others having similar situations. Hope you are all going ok despite this condition.

0 likes, 13 replies

13 Replies

  • deb39563
    deb39563 june24146

    Posted

    Hi I know how it is nobody really understand s how we feel they don't realize we live unbalanced mostly trying to carry on as normal it takes a lot emotionally and physically but we do keep on keeping we are altogether take care
    • june24146
      june24146 deb39563

      Posted

      Hi Deb Yes we do keep on going on as though everything is ok - I am very independent person and try not to make things a big issue and keep my feelings to myself. I hope things are ok for you.  Take care June.
  • marion50354
    marion50354 june24146

    Posted

    I did have BPPV, so at least I had a diagnosis. And if you read my reply to patty, you'll know I had various exercises and vestibular therapy.Finally I got better. But I don't think I'll be 100%. I still get dizzy if I get up too fast, turn to the side quickly, or lay down flat on the bed. It passes, but sometimes I'll pick up something from the floor and get dizzy.It's not forever but I have it infrequently..

    In your case, since you went deaf in one ear, is it possible you need a hearing aid for that ear, or if that's not possible, maybe a hearing aid for the other ear to possibly correct the imbalance.

    As for your family not believing you--if you can't get them on board, maybe you should write them a letter telling them that you're very disappointed that they disbelieve you. Would someone lie about that?

    And that if they persist, you won't discuss it with them anymore--it only makes the symptoms worse.

     But couldn't more vestibular therapy and exercises at home help the dizziness? If you still get dizzy after 3 years, maybe you might get a second opinion--probably from an Ear Nose & Throat doc.I hope you will keep trying..

    • june24146
      june24146 marion50354

      Posted

      Hi Marion

      Thank you for your reply. I have been to an ear specialist, nothing can be done about my hearing due to the eighth cochlea/vestibular nerve being totally damaged - cannot have hearing aid. I could have a BAHA bone implant  but have not considered that at this stage. Yes I do find stress makes the symptoms a lot worse. Take care June

  • gillian76726
    gillian76726 june24146

    Posted

    Go into VEDA website (vVestibular Disorders  Association) Theynhave a Facebook,page too.  On their maonmpage theynahve a descripton of all,sorts of conditions  that cause dizinnes.  also,how this thing  affects people,like,us.  print that page out and give it,to your family to read.  They Need to be educated and advised on what you are dealing with.  i Did that with a couple,of,friends who were ignorant of the facts and now they sympathise.
    • june24146
      june24146 gillian76726

      Posted

      Hi Gillian Thank you for your reply.  I have been to VEDA  website and did give family some information, maybe I need to look at some additional information and give it again.  Cheers

      June

  • Terry6872737
    Terry6872737 june24146

    Posted

    I would recommend seeing a Neuro-Otologist if that is not who you saw that gave you the diagnosis of a "vestibular nerve stroke".  I can honestly say that I have never heard of that and nothing that I have researched, have I ever read of any such condition.  Not disputing that it may in fact exist but, what I know of a stroke is that it is damage to brain tissue.

    This is from the Mayo Clinic website:

    "A stroke occurs when the blood supply to part of your brain is interrupted or severely reduced, depriving brain tissue of oxygen and nutrients. Within minutes, brain cells begin to die."

    Google Labrynthitis.

    • june24146
      june24146 Terry6872737

      Posted

      Hi Terry

      Thank you for your reply. I had a consultant neurologist who made diagnosis stroke in cochlea/vestibular nerve. Then I had further tests with Neuor Otologist.  I did not get anyt answers as to why it happened only that I had untreated  very high blood pressure prior to the event.  But despite what they call it I have this condition and symptoms to live with.  Hope you are managing your condition ok.

      Cheers June

  • dee50000
    dee50000 june24146

    Posted

    Welcome June (my mother's name),

    I can empathize! Just my 2 cents...google "oscillopsia youtube" and show them one or two of the videos on there. My sister actually said to me "Everyone is dizzy sometimes" and "of course things move when I turn my head!". They have no idea.

    What you describe I think, is oscillopsia. It's when you turn your head, or move it up or down, just for a second your vision lags behind. This is very disorienting, and is why you feel imbalanced; at least it is with me. Bumpy roads, when your feet hit the payment, these both are triggers for me. The good thing is, it's only when I move my head, but the bad thing is, it never lets up. Whenever I move my head, that happens.

    There are vestibular therapy exercises that can/should improve this, but it takes a loooong time for them to have an effect. Good luck, and you will get a lot of support here, if nowhere else.

    • june24146
      june24146 dee50000

      Posted

      Hi dee Thank you for your response. I have been to a vestibular therapist and done the exercises walking up and down nodding my head, turning left to right, focusing on a spot on wall and walking towards it moving my head etc. I am fine sitting still, but in car as passenger is difficult.  I will look at the videos you have suggested - many thanks. I was told my situation is permanent and will not improve.  Hope you are doing ok.  June.
    • dee50000
      dee50000 june24146

      Posted

      I've never heard that, that's it's permanent. I suppose what you were diagnosed with makes a difference, but the exercises are supposed to retrain your brain, make new pathways, etc.

      There are so many that don't know what it is, what it's from, how long it takes to help, etc., so I wouldn't give up hope. Did you get a diagnosis?

    • dee50000
      dee50000

      Posted

      Oh, you did... that is very unusual! I didn't think that was possible (stroke in a nerve). I'd yet a second opinion!
    • june24146
      june24146 dee50000

      Posted

      Hi Dee yes it is unusual but that is what it is  Following is some info that confirms stroke..

      Vestibular Neuritis

      Strictly speaking the term means inflammation of the vestibular nerve but the aetiology is thought to be avestibular neuropathy. A theory gaining support is that a significant proportion of cases are caused by areactivation of herpes simplex virus that affects the vestibular ganglion, vestibular nerve, labyrinth, or a combination of these.

      Stroke, especially posterior inferior cerebellar artery syndrome (central signs not always present so stroke should be considered in any patient with cardiovascular risk factors). 

      I have had herpes simplex (cold sore virus in eye) and have had cardiovascular problems.   Very complicated disorder - isn't it.

       

       

       

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