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Dizziness way too long.....

Posted , 8 users are following.

marie04645
marie04645

Can't believe this is happening to me &/or anyone else.. Awful & the dizzy & spacey head is part of my daily life.  I have been seen by ENT doc, twice & he sent me to neurosurgeon (hve bad neck) after brain mri & Cat scan that doc said he didn't believe prob came from neck.  (get plenty of headaches)  My hope is in the neurologist I will see tomorrow. But who knows.  I am a older person & yrs ago I had BPV but that is not what this is.....I had lunch with my friend today & truthfully was not enjoyable,  I was going through the motions.  I need a diagnosis.  Thanks for listening.  Marie

 

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  • gillian76726
    gillian76726 marie04645

    Posted

    I don,t know what country you are in but the neurologist may be of help, although i really think I you should be seeing a Neurologist Otologist. I saw a neurologist and they didn't,t help much. But thenOtologist  one did many more detailed tests. It could still be connected to your BPPV, and progressed into,something else, so make sure you tell theNeiro about it, and ifmyoumhave little joy from him or,her, ask,to,seemthemN.Otologist okay? Momma also,in the older generation so know  where you re coming  from!!
    • gillian76726
      gillian76726 marie04645

      Posted

      Sorry for daly, been unwell,last few days with heat and vertigo!  all the tests were over a year ago and can,t remember the names of them.  Just extensive tests with movement, sound etc etc.. Eyes etc etc.
    • marie04645
      marie04645 gillian76726

      Posted

      Hi Gillian ---As far as I know, we do not have Otologist specifically in this country USA.  We have Otolaryngologist (ear, nose in throat).  Saw him twice & he sent me to a Neurosurgeon.  I could be wrong but I worked for doctors & never heard of that specialty.   What is their specialty?
    • gillian76726
      gillian76726 marie04645

      Posted

      You do have Neuro Otologists in the U.S.!  their speciality is all 

      to,do with what we all have on here! If you google "U.S. Neuro Otologists" you will get loads of references, Mayo Clinic for a start. otolaryngologists o are more ENT related, and don,t go into,the vestibular system and the neurological,connection with the vestibular area, so  are pretty much a waste of time unless it is your hearing, your throat or neck that is causing tthe problem.

    • marie04645
      marie04645 gillian76726

      Posted

      Yes, I found out there are many in Philadelphia & a few in Hershey PA

      which is easier for me to get to than Philly.  Have to see what the insurance people say as it would be out of network.

       

    • marie04645
      marie04645 gillian76726

      Posted

      Hi gillian ----did the Otologist do anything or prescribe anything that improved your situation?
    • gillian76726
      gillian76726 marie04645

      Posted

      it is an ongoing process Marie,,I have had this for nearly 5 years and on,y got to see the Neuro otologist last December. (Through my own research on line and educating myself about this conditiona) It is  not an overnight,,or even over month situation in recovery, especially the longer you have had it!, I,wish I had known about them in the first year as I feel my recovery would have been quicker,,that is why i urge people,in the early stages,to,skip ENTS, Audiologists etc as I was sent around pillar,to,post to see who just wasted my time!  all the meds that they tried, to,give me either didn't,t work, or made me feel,worse. So I have learned how to support myself with supplements.  at the. Moment I am,going through CBT, just started along with different Vestibular Therapy exercises.  Sadly it,is not like any,other condition where you just take a pill, do a few exercises for a few weeks, have an operation etc etc., and then Come out of it.  some people who have maybe  BPPV or Mnieres can recover quicker, with either meds or Eply Manoever  but if like me you do not have a definitive diagnosis (mine is called Chronic  Disequilibrium), it takes a while!!  The good reason I reiterate,,to see a Neuro Otologist is as much about getting a decent diagnosis, and therefore the correct treatment .
  • gillian76726
    gillian76726 marie04645

    Posted

    Excuse typos but it,s hot and am struggling with keyboard today!
    • marie04645
      marie04645 gillian76726

      Posted

      Hi,

      I am in the  US --is this a UK site?  Thanks all for responding.  Not sure what a Otologist is or does or have one in this city?.  It helps to have people that have a clue what I am going through.  Would like to hear any suggestions anyone might have....I had brain & head scans & MRI.  Poor hubby just doesn't know how to help.  Thanks again.

      Marie

    • marie04645
      marie04645 gillian76726

      Posted

      Did they give you any medication?  Oh & back in Feb--I had vestibular therapy & thought I was better & so I stopped going.  It is expensive as insurance does not pay it all.

       

    • gillian76726
      gillian76726 marie04645

      Posted

      Marie you GP will  know what a Neuro Otologist is.  If you google that,you will  get an explanation .What city are you in please?
    • gillian76726
      gillian76726 marie04645

      Posted

      They tried medication of various kinds that were not appropriate,must giessing at Meniers, BPPV, and of course,they either did not work or made me worse!
  • chris1303
    chris1303 marie04645

    Posted

    I agree an otologist is the best route - I had 3 hours of testing a week or so ago and came away with a load of balance rehabilitation exercises, he was pretty sure it was vestibular neuritis dragging on for 5 months. I have developed some health or just general anxiety during this period which hasn't helped as the two feed off each other.

    You mention Marie you are an older person - have they checked blood pressure and heart efficiency at all? I guess your GP was satisfied the dizzyness didn't come from a cardio related problem?

    Good luck tomorrow.

  • Trevis
    Trevis marie04645

    Posted

    Aww it is awful Marie x. I hope you get some answers after tomorrow. I can't even get a scan on my back ( unless I fall or something similar!!). Nothing from my doc been living with imbalance for years now. Have decided to bite the bucket and have got myself a wee part time job which I start next week ... God only knows how that will go if at all but I am sick of being stuck at home for the last 5 years. I want my independence back! Xx
    • marie04645
      marie04645 Trevis

      Posted

      Yes Trevis, I saw my cardiologist yesterday.  He is not sure what I have or IF it will go away.  But then it is not his field.  Sometimes I feel I will lose my sanity.  My doc gave me anti-depressants.  I didn't start them because they may add to the discomfort.?
    • marlene21102
      marlene21102 Trevis

      Posted

      Hi Travis ,good for you going and getting part time job ,hope maybe that will help ,is it a stand or sitting job ? 

        I was telling Anne what my day was like ,don't know ,always something .im on a BP med only 50 mgs ,which I take at night ,could have been a combination ,weather heat ,caused a quick drop in BP .Menopause still going on ,could be that .

       Let's know how you get on next week xx

       

    • gillian76726
      gillian76726 marie04645

      Posted

      Marie, they tried to get me to take anti depressants, I refused!  They can actually make you worse!
    • marie04645
      marie04645 gillian76726

      Posted

      Regarding anti-depressants I too have a supply on hand.  But I too decided not to take them for fear of the making me feel worse.
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