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Tail end of VN or???

Posted , 7 users are following.

melody08508
melody08508

Hey! 8 weeks ago I woke up in the middle of the night with vertigo. I have been in and out of hospital having all sorts of tests including a CT scan which all came back clear. They put it down to a viral inner ear illness and as I never had hearing loss my guess is VN. I'm driving again and back at work etc but I still feel slightly off all the time. When I close my eyes I sometimes feel as if I'm spinning. I was having awful headaches but haven't had them since I started my anti depressant tablets to treat the anxiety VN left me. I feel quite tired all the time and my chest feels tight (maybe anxiety)? Iv been on anti depressants for nearly a week. I haven't had vertigo in about 6 weeks but I find busy shopping malls make me feel off and also places with weird lighting. Am I coming out the other side now? I'm not sure if I feel off because of the anxiety or VN? Just want to feel 100% again :-(

1 like, 38 replies

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  • eleftherio33095
    eleftherio33095 melody08508

    Posted

    To clarify what you have written.  Did you receive a formal diagnosis from a physician, and from which speciality?

    What medications did you take when you received the diagnosis?

    If you did have VN, what you are experiencing is a form of visual vertigo, and is a result of poor compensation from your brain as a result of the VN.  But we need to clarify what you had in the first place.  Apart from a CT, what other tests have you done, and what were the results?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • melody08508
      melody08508 eleftherio33095

      Posted

      I just saw a general medicine specialist. I'm from NEW Zealand and it seems to be a long process to see someone in the right "field". I have another follow up appt in 6 weeks and if I'm not better they can refer me again to the right specialists/therapy.

      I was given stemitil and anti nausea drugs but I only took them for the first week.

      I have had many blood test, I can't even remember them all. They checked my heart, they did a test to see if I had chrones disease or another bowel issue, they checked my iron, infection in the body etc etc I had a lot of testing done and VN was dx as a process of elimination. I have had most of the symptoms of VN aswell. Nausea, vertigo, headaches, etc

    • eleftherio33095
      eleftherio33095 melody08508

      Posted

      All things being equal, I would recommend that you see a neurotologist, or an ENT specialist with a special interest in neurotology.  He or she should check your eye movements, either in the dark with a flashlight, or with frenzel goggles.  (p.s. headaches is not a usual symptom of VN.  Therefore, if headaches is a prominent symptom, especially if it is on one side of the head, you may actually have vestibular migraine).

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • melody08508
      melody08508 eleftherio33095

      Posted

      I think the headaches were from the anxiety. But I also suffer from headaches as does my mother and her mother. I just read about visual vertigo and my triggers were listed, crowds, supermarkets, the beach with waves, the movie theatre, it all makes me feel off
    • Laurie34
      Laurie34 eleftherio33095

      Posted

      Is there anything that can be done with poor compensation from the brain. This post sounds like me. I'm 8 months into VN and it's not getting much better. 
    • melody08508
      melody08508 Laurie34

      Posted

      Hey I read that gaze stabilising exercises can help and also just going to a mall, or the beach and watching the waves come in. It's tough but it's meant to help
    • Laurie34
      Laurie34 melody08508

      Posted

      Thanks Melody.  I started the exercises about 3 weeks ago.  Not very long to figure out if it will work.  But I'm determined.  I know what you mean.  Challenging the system is necessary and tough at the same time.  
    • eleftherio33095
      eleftherio33095 Laurie34

      Posted

      In all such cases, vestibular rehabilitation is recommended.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • Laurie34
      Laurie34 eleftherio33095

      Posted

      What is the time line you generally see for improvement? This is so hard and frustrating.  I jut want my life back.  I only seem to have balance issues with my eyes closed.  My symptoms are a spacey feeling as the day wears on and some blurred vision especially close up.  If I stand with my hands on my chest I slightly sway.  I have felt a "pulling" with my eyes to the right  and in my head.  I have some tittinus about once a week mostly in my left ear but occasionally in my right.  Only lasts about 6 seconds. I get very tired by the end of the day.  I feel generally off all day long.   Are there any rehab exercises you feel have more success? 
    • eleftherio33095
      eleftherio33095 Laurie34

      Posted

      A few months.  Your neurotologist or ENT specialist should direct you to the right center for the correct exercises.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • melody08508
      melody08508 Laurie34

      Posted

      My issue is also with my eyes closed! I feel like I'm swaying when I'm not. Walking is really good and try walking 10-20 paces with ur eyes closed in a straight line 5x a day. I also balance on one foot with my eyes closed 30 seconds per foot 3x a day
  • Terry6872737
    Terry6872737 melody08508

    Posted

    From my experience you have begun the recovery process.  Residual symptoms from VN can last for up to a year.  The issues with the stores will begin to settle down as the brain compensates for the nerve damage.  I had headaches as well and they seemed to be caused from stress and tension from the body trying to balance itself.  Normal course for VN is 8 to 12 weeks.  You seem to be on schedule.  The sensatiith the lighting is the brain trying to take in too h along wie vestibular deficeit.

     

    • Terry6872737
      Terry6872737

      Posted

      The sensation with the lighting is the brain trying to take in too much along with the vestibular deficeit.

      Last sentence got jumbled!!

    • melody08508
      melody08508 Terry6872737

      Posted

      That makes sense. I seem to have an issue with motion aswell, hence why I feel worse with crowds, or at the movies and even driving. I still do it though in the hope that the more I do it the more my brain will adjust. A friends nephew went thru this too and his lasted 3 months so 12 weeks makes sense. I think my anxiety makes it worse but hopefully the medication I'm on deals to that :-) I'm glad to hear Iv begun the recovery. This thing is awful!
    • Laurie34
      Laurie34 Terry6872737

      Posted

      Did you ever experience a "pulling" feeling in your head or eyes?  I don't know how else to describe it. 
    • Terry6872737
      Terry6872737 Laurie34

      Posted

      I experienced most anything that you can come up with.  The nystagmus of the eyes is usually the issue.  It makes everything seem off and imposible for the brain to understand.  The visual field issues are caused by the brain not knowing what to focus on.  Hence the issue in crowds, open spaces, large stores, moving objects, etc.
    • melody08508
      melody08508 Terry6872737

      Posted

      Did u ever get the right chest? Possibly anxiety? I always swear it's my heart but I think it's anxiety related
    • Terry6872737
      Terry6872737 melody08508

      Posted

      Yes I experienced anxiety throughout my recovery.  Anxiety makes you feel several things and imagine/fear the worst in everything.
    • Terry6872737
      Terry6872737 Laurie34

      Posted

      The exercises that I did were to close my eyes in a seated position and then to rise from the chair and sit back down 10 times.  I would then stand with my eyes closed for 60 seconds and focus on not swaying.  I also took an object, an ink pen, and moved it from left to right and then from right to left and followed it with only my eyes, not moving my head.  I did 10 of these.  After that I would take the same pen and make a figure 8 from left to right and from right to left and with this motion following the movement with my head and keeping my eyes focused on the item.  I got faster at these as time went by.  After I completed these I would walk a 20 foot corridor looking left and then right on each alternating step.  Did 10 of these trips down the corridor.  After that I did the same corridor, 10 trips, and looked up and down with each step.  I then walked the corridor and bounced a ball as I walked, again 10 trips.  This all took me 10 or so minutes to do.

      After I adjusted to these, probably a month, I added standing facing a wall and I would bounce the ball off of the wall and catch it following the rise and fall of the ball with my head motion.  I worked up to 50 catches with each hand.  I would then walk the 20 foot corridor as above but added tossing the ball in the air and catching it as I walked versus bouncing it off of the floor.

      After working on these for 2 or 3 months I started doing more exercises in the dark thinking that I had become visually dependent versus dependent on my vestibular system.  Mainly the sitting and rising and I added one where I would face the corner of a wall and march in place and try not to bump forward or sideways into the wall.  I tried to walk the corridor in a darkened setting as well.  There is a saccades website online that helped with some other gaze stabilization by watching moving objects on the computer screen.

      I also at one point placed an X on a card and mounted it to a wall and would move my head left and right and up and down trying to maintain focus on the X.  Did each of these, side to side and up and down, for 60 seconds resting inbetween. 

    • melody08508
      melody08508 Terry6872737

      Posted

      It's such a crippling thing but I'm on Prozac now and hoping that helps me get thru. I feel like I'm recovering so need to focus on that but I have read so many stories of people who never recover and it scares me. There's that fear and anxiety again! I think aswell it's there because I never really got a proper diagnosis. They did a bunch of blood tests on me and that all came back clear and my CT scan was fine so they said it could possibly be a inner ear virus and that was that! I see a specialist again in July so if I'm still no better il asked to be referred on to someone who can help but hopefully by then it won't be needed!
    • Terry6872737
      Terry6872737 melody08508

      Posted

      Look up PPPD, Persistent Postural Perceptual Dizziness.  This will shed some light on how anxiety perpetuates this condition.  The Prozac should help you get past the fight or flight syndrome caused by this dreaded illness.  It will also shed some light on how your tests may have come back as inconclusive. 
    • melody08508
      melody08508 Terry6872737

      Posted

      Cool I will look that up! I haven't even seen a inner ear specialist (not sure what they are called) or done any testing that others have done. I think it was called VNR or something? My tests were checking my heart, checking for infection, iron stores, etc even Crohn's disease and inflammatory bowel. But nothing to do with my ears. It sounds like VN to me tho! I woke up in the middle of the night with vertigo. It was so bad I couldn't walk without holding onto the walls. Car drives would make me spin out and I would have panic attacks. I was nauseous all the time. All just came out of the blue. I'm otherwise healthy, semi fit (haha). I had just started at the gym that week so that was a set back. I had waxy ears so they syringed them and my right ear when they did it made me dizzy. Lasted a good three weeks. I'm now on week 8 but I'm not dizzy now, but sometimes when I'm going to sleep I feel like I'm spinning but as soon as I open my eyes I see that I'm not. Also my balance with my eyes closed is bad. I think at the moment my anxiety is the worst thing. I still don't feel 100% but I think il get there!
    • Terry6872737
      Terry6872737 melody08508

      Posted

      I you are only 8 weeks in you will denitely get there.  Sounds like VN from what I have reseached.
    • melody08508
      melody08508 Terry6872737

      Posted

      That's what I thought too. Intially I thought labyrinthitis but u suggested VN to me in one of my older posts as I didn't have hearing loss or tinnitus so I looked into VN and it all matched up. U have been a HUGE help! I can't thank u enough. U may not think u have done much but i assure u that u have. Most importantly u have given me hope. I'm only 28years old but feel like it's really robbed me of my time with my kids. But if I feel 70% now, then surely I will feel 100% in time :-)
    • Laurie34
      Laurie34 Terry6872737

      Posted

      Thank you Terry. You're always willing to help. Are you fully recovered? 
    • Terry6872737
      Terry6872737 Laurie34

      Posted

      I am around 95% but, have some days where I feel closer to 100%. I struggled for over a year to get to the 95%. I have chronic sinus issues and barometric changes bother me but, I live life as normal and do most of what I want each day. This is a weird illness that few understand. Most of those that understand and can relate have had to walk this road, unfortunately.
    • Laurie34
      Laurie34 Terry6872737

      Posted

      Thanks Terry. I've had many sinus infections over the years as well. When did this initially happen to you?
    • Terry6872737
      Terry6872737 Laurie34

      Posted

      I was hit March 23rd, 2014. I also had a bout several years ago that resolved with no residual issues in about 3 months.
    • Laurie34
      Laurie34 Terry6872737

      Posted

      Sorry to keep asking you questions.  But it's comforting to connect with someone who's come through it successfully.  Was there any moment that something happened that you realized it was over?  Or was it so gradual you had to recognize it subconsciously that it was actually over?
    • Terry6872737
      Terry6872737 Laurie34

      Posted

      It is just a gradual fading of symptoms.  They get more and more minor and then disappear or cause very minor sensations.
    • Laurie34
      Laurie34 Terry6872737

      Posted

      Thank you Terry.  You've been a lifesaver for me.  I truly appreciate your continued presence on the message boards even as your symtoms dissipate and decline.  
    • melody08508
      melody08508 Terry6872737

      Posted

      Terry I have now had ringing in my ears for 2 days constantly and it's made my anxiety so bad that I feel off again. Can this still be VN? I'm worried now
    • Terry6872737
      Terry6872737 melody08508

      Posted

      I had quite a few symptoms that would come and go.  My tinnitus always acts up when I have sinus related issues.  It has been bad for a couple of weeks as I have been fighting a sinus infection.
    • melody08508
      melody08508 Terry6872737

      Posted

      My dad suffered from sinus issues as does my son. I do wonder if it's that. The doctor is treating it as that for now and I have an antihistimine plus nasal spray. How would I know if I have meniers disease? I haven't had a hearing test but wouldn't say I have hearing loss but could it be so little that it's not noticeable? I worked myself into a state thinking I have that. Sorry to keep bugging u!
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