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Went to ENT today...

Posted , 9 users are following.

patty818
patty818

Well saw the on call ENT and founder of the clinic. I thought I was having bppv, now not today he said. He referred me back to my ENT because he is treating me and said it would be better for him to keep treating me and see what's going on now. So that was a waste of time.

I am so tired of this dizzy crap. I told my husband last night if they said we can take your dizziness away by chopping off your finger I would say do it. No one seems to know what this is and how to fix it. I've had this for 13 months and its rediculous. I know my anxiety is not helping but how can someone have dizziness most of the time and then have the sensations change and not be anxious. If it wasn't changing the sensations I mean them maybe I would be so worried that it's probably something worse then they think it is. I don't know what else to do, except see my regular ENT next week and hope for the best.

I don't want to take these meds but I may have to. I don't know why I can't believe this is my inner ear, I'm mean for goodness sake every time I move I feel like I'm dropping, if I Bend I feel it like I'm falling, after bending and standing up I feel like the room is swaying, the shower I feel like I'm bobbing, sitting I feel like I'm sitting on a ballon and going up and down. See what I mean every sensation is different every day. How can this be MAV? I don't know, hut I'm fed up with it

0 likes, 54 replies

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  • elizabeth48847
    elizabeth48847 patty818

    Posted

    Im sorry to hear of youre experiences

    Can no one tell you what it is?

    Have you had tests?

    Which ones?

    What do you do with regards to work

    And daily activities?

    I suffer terribly with anxiety

    And my sudden recent veftigo episodes

    Are left as

    Caused by anxiety

    Though When i had my first attack

    I was out walking my dog calmly

    Which is even more alarming i think

    Had mri and showed nothing

    Which is great but also a worry

    Too

    So stay calm above all

    Else is my first piece of advice

    Then get second opinion

    Let me know what happens please

    Good luck

    Liz

    Xxx

    • patty818
      patty818 elizabeth48847

      Posted

      Hi Liz

      I've been told it's migraine associated vertigo and slight mal de debarkmont syndrome (mdds). I had an mri 6 years ago when I had dizziness from bppv and April this year had a head cut and it was clear, have done all hearing test and they were perfect, had VNG test about 5 months ago also and got thru the test until they put the air in the first ear on the right and the spinning falling feeling hot bad and they stopped the test. That's when the ENT said it was MAV. It's pretty much constant I was having days of nothing then the past weeks it back bad. Of course my health anxiety and worry is not helping, but went I feel the smallest twinge of it then the anxiety sets in.

      I'm sorry your having dizziness. My ENT says anxiety will make it worse and anxiety can cause it. I hope you feel better and thanks for listening.

    • elizabeth48847
      elizabeth48847 patty818

      Posted

      Hi Patty

      Thanks for reply

      What is a vng test?

      Wonder why my consultant hadnt done that for me?

      Dont know if i should go back and ask ?

      What have tou been diagnosed with

      Does it stop you going away?

      I need a holiday

      Dont know whether to go for it

      Love liz x

    • patty818
      patty818 elizabeth48847

      Posted

      HI Liz

      The VNG test is the one where you wear the goggles and they test your eye movements, they also put either air or water in each ear.  If your ENT did not do this test you may want to ask about it next time you go.

      I've been diagnosed with migraine associated vertigo and slight mal de debarkmont syndrome.  

      Yes it has stopped me from taking any vacations, at least for now until this gets better.

      what is your diagnoses?  Are you doing any VRT exercises?  Are you on any meds?

  • Sochima822
    Sochima822 patty818

    Posted

    What meds did he give you?
    • patty818
      patty818 Sochima822

      Posted

      Nortriptyline 10mgs, I don't want to take it, I took Amitripyline which is the same family as nort and had bad reaction to Amitriotyline so I am afraid to take it

    • Sochima822
      Sochima822 patty818

      Posted

      Nortriptyline is better tolerated than Amitrptyline. Do you suffer from migraines or is this for anxiety?
    • patty818
      patty818 Sochima822

      Posted

      ENT says MAV and I do have anxiety disorder. I've read nortriptyline helps with both. I'm now wondering if it's actually pppd.

    • Sochima822
      Sochima822 patty818

      Posted

      It very much sounds like it could be PPPD. Maybe bring it up to your doctor or go to the Mayo clinic as Terry suggested as you may very well be closer to finding your true diagnosis.
  • engy29162
    engy29162 patty818

    Posted

    Hi patty it sems like you are describing my case

    I have the same thing and every day is diffrent. I have this crap for 7 month now. I have done all the blood tests and the scans you can imagine. Everything in normal range .even the medicines didnt help that much. And the most worse part to have kids and you have to look after them

    I always feel i am walking on sand and the ground is woobly .I have to lean on the wall or whatever while walking.

    • patty818
      patty818 engy29162

      Posted

      Hi

      I'm sorry your going this to. I can't imagine having kids with this, my kids are grown.

      So you have all the same symptoms of leaning, falling feelings when standing or bending or walking, rocking feeling, bobbing up and down feeling, being pushed when walking, headaches, neck aches, nausea? I have all this. Do you? Do you have different sensations on a daily basis? What meds have you tried? Are you on meds now?

      This is the worst disorder and with so many people having that they can't figure it out. Makes no sense to me. I'm so angry about it, I'm tired of it

    • engy29162
      engy29162 patty818

      Posted

      Yes patty I have all the symptoms you have mentioned add on all of these the shortness of breath. I can not go out ony own .i am 34 and acting like 70 ...even in the shower which is the worst part when i close my eyes.i know its not easy and awful feeling .I use to take betaserc 16 and tibonina .tibonina gives me bad side effects so i stopped taking it.I continued with beta serc for a month until it gave me headche then i stopped it. I am now not taking any medicines .the betaserc gave me just 50% recovery .I also have panick attacks everyday espcially in the morning which is really really bad .
    • patty818
      patty818 engy29162

      Posted

      I know what you mean about the shower, I used to have an anxiety attack just thinking about taking a shower, it was so hard, especially shaving my legs, when I would bend over and stand back up that when the bobbing and feeling like the shower was moving would hit me.  Washing my hair is bad to.  I have morning anxiety as well, I think mostly because Im anticipating what the day is going to bring.  I have shortness of breath also, comes out of nowhere, but I'm learning to just relax and slowly breath thru it, otherwise I panic and really can't breath.  To bad i can't relax thru all of it.  

      Its hard to try meds because of the side effects, at least for me because they scare me and I just keep thinking of all the bad things that can happen.

      I hope you feel better and we can all find some relief 

  • Terry6872737
    Terry6872737 patty818

    Posted

    You should look closely at PPPD.  Seems that I remember that you are in Florida.  If I were you I would venture a trip to Jacksonville to the Mayo Clinic.  Mayo has a guy, he is in Minnesota, that is leading the field on the effects of long term issues associated with perceptual dizziness caused by anxiety.  I'm sure that research/data is being shared with those in practice in Jacksonville.  See if the symptoms of PPPD do not fit your case.

    Just my thoughts 

    • patty818
      patty818 Terry6872737

      Posted

      Hi Terry

      Thank you for the info. I read a small piece on pppd and wow sounds like me. I guess having the initial attack and worrying about it so much, and not getting help for months could have definitely helped to turn this into pppd. For all I know the initial dizziness could have gotten a lot better but my anxiety kept it going and now moving around is a fear fir me.

      I can't believe you remember where I live, I can't remember what I did yesterday.

    • Terry6872737
      Terry6872737 patty818

      Posted

      As I understand PPPD, that is exactly what happens.  After months of dealing with symptoms the brain becomes fixated on the symptoms and even normal everyday sensations become exaggerated by the condition.  Then  when you have VN symptoms they are even more exaggerated with the anxiety component.  Anxiety is a powerful force and we sometimes experience it even when we feel that it is not there..  I have been recovering for almost 30 months and cannot get the final 5% or so resolved.  I am sold that it is PPPD and just recently began a new SSRI.  I seem to be able to tell a difference already.  While an SSRI will not cure the residual of the damage to my vestibular nerve, it helps to relieve the minds focus on the sensations thereby allowing the rest of the body to heal.

      I remember you saying that you went to a university for testing which I assume was University of Florida.  There are just so few in the medical community that understand what we are dealing with.  Also, there are other drugs to help with MAV that have less side effects that the anti-depressants.  Amtriptylene and Nortriptyline, as I'm sure that you know, are second-generation tricyclic antidepressants.  They are just used in lower dosage to treat migranes.  According to what I have read an SSRI is the anti-depressant of choice for effectively treating PPPD.  Beat blockers, atenolol and propranolol, may be a better choice drug for you if you do in fact have MAV.  My money is on PPPD.

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