Vestibular neuritis won't go away

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Hello all,

I am wondering if anyone has symptons that are similar to what I've been experiencing.  Some background - I have had silent migraines for years - 15+.  I have a pain migraine about once a year.  Last September I had Vestibular Neuritis and it destroyed 83% of my balance on my right side. I was bedridden for a week, then had to hold onto walls to walk around the hosue, very wobbly for months.  My sepcialist did not recognize it as Vistibular Neuritis - he insisted it was a silent migraine.  When the side effects continued for months he finally agreed to set up an appointment for Caloric testing. (basically involves having water (warm/cool)  injected into the ear with a syringe).  The results showed that it was indeed Vestibular neuritis with an 83% loss.  I have had months of Vertigo Therapy which has helped tremendously.  Now I can pretty well do everything I had before.  Unfortunately I suffer from positional vertigo and have to constantly learn what I can and can not do regarding that issue.

Now to my big issue - Although I am not dizzy (except for the positional vertigo) I continue to have problems.  The only way I can describe it is that my head is 'wonky'.  There seems to be a delay when I move my head - my brain needs to catch up with my vision.  I have a hard time concentrating when it's really bad.  My specialist doesn't have any answers for this - not sure he even believes me.  I am at a loss as to what to do.  I do know that if I spend lots of time reading or concentrating on something close it gets worse.  If I'm outside, hiking, walking it seems to get better.  Does anyone have these same symptons and if so have you discovered anything to help?

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  • Posted

    The above is due to not having compensated 100% for the vestibular loss. Vision and proprioception (touch) have not completely filled in the gap left by the vestibular loss.

    The positional vertigo is most likely a seperate issue.  

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

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    • Posted

      Thank you for your response - in your opinion is this something that can be worked on with Vistibular Therapy for 100% recovery? 

      My vision seems fine and yes, I agree that the positional vertigo is separate.  I had positional vertigo once in awhile, but now it's an every day issue depending on how I move my head - I cann't look up or when I have my hair washed at the hairdresser it is really bad to the point of me having to change position to have my hair washed.  Luckily my hairdresser fuly understands.

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  • Posted

    Yes that's exactly how many of us feel.  We use the term "brain fog" to describe it. And it is horrible.  I'm still dealing with it ten months later.  Although the VRT is helping.  

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    • Posted

      Yes, brain fog.  It just sucks the life out of you.  I have started doing my VT exercises on my Strider (similar to an eliptical) without holding on - it does help, as well I have found a bike ride helps.
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  • Posted

    Hi Elizabeth36542

    I have the exact same condition regarding moving and needing my head to catch up with me.  I've been losing my vision or having it distorted or doubled when looking at stuff close then trying to focus further away.  I've had two new pairs of glasses - the second has helped the best, but I still have difficulty between close and far away.  Nothing helps.  I just know to relax because it isn't permanent, the vision does return. 

    If I get too hot or exert too much effort I bring on the VN full force.  And, unfortunately, I've begun to become 'nasty' when in that condition.  It's not my regular personality so it bothers me a lot.  Then I don't remember what has happened.  I don't seem to be able to control it.  Has this ever happened to you?

    I see a specialist in a few months.  But, I've had this condition for almost three years - stemming from swimmer's ear that got infected into the bones of my head and the virus settled in and the condition has become permanent.  At its worst I was laid up for three months.  After a full attack I can be laid up for days.  I love the days I don't feel sick.  But then I just want to go at chores etc. and then it all happens again.  I don't do lazy very well.

    If I find any answers on my end for the eye distortion I'll let you know.  I have tried to play brick breaker on my phone to see if I can follow the ball.  So not happening when it gets fast.  I just can't catch up with it.  My eye doctor knew exactly what I was talking about when I went to him.  (My regular doctor couldn't explain what was going on - and I too, felt like they thought I was making it up.)

    Take care  . . .

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    • Posted

      Thank you Margot 9009, I have found that any amount of time spent on my iPad (I like doing puzzles) is very detremental to my 'foggy head'.  I have deleted the app.  As well I do stained and fused glass and have had to reduce the amount of time I spend on a hobby that I absolutely love.  A 2 hour session is about all I can do - very frustrating.

      I haven't had any subsequent attacks, but I seem to have setbacks.  I feel fine after a lot of activity like hiking, and getting outside doing stuff, but then the next day I might have that foggy head feeling again.  I'm at a loss at to what can be done, what causes it to go into a setback.  Unfortunately there seems to be more questions than answers.  If I discover anything new I will post it.

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    • Posted

      Did you get prism glasses?  I'm looking into those,  I have to travel to New York to be tested from Massachusetts in the USA.  Long drive so I hope it's worth it.

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    • Posted

      Hi Laurie34 - no, I didn't get prism glasses.  I've had a hemiplegic stroke on my left side and subsequent palsy with my VN.  The eye doctor says that my left eye is wandering away causing the distortions.  The prescription he has me on now supposedly brings in the left eye to allign with the right better.  Will ask more questions when I see the neurologist in September.  Let me know about the ones you are looking at.

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