New to vestibular neuritis diagnosis

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new to vestibular issue.  just had mri and vng, having VT

If someone would like to talk and compare notes, I am up for that

thanks

Pooli

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  • Posted

    Hi Pooli,

    I’m having vestibular issues too, started from severe dizziness, vomiting, nausea. I wasn’t able to walk or drive. I have seen ENT he said labiryrintitis. Then I seen neurologist he said vestibular migraine and BPPV. Have done MRI scan, CT scan blood tests which all came clear, except small neck disc bulge. Neurologist convinced me that neck disc bulge is not giving all that symptoms what I’m having.  I have made my own research and thinking I might have vestibular neuritis not only BPPV.  Have you seen any vestibular specialists or planning to do? What are your symptoms and how you dealing with? 

    Thank you, Zhibek.

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    • Posted

      Thanks Zhibek,

      For sharing your information.

      I did have an MRI which was fine, the VNG showed a 50percent loss on the left ear

      I am having the vestibular therapy, doing eye gazine exercise and balance therapy as well.

      So far, I do see improvement.  I just want to be able to go onto home exercises soon enough, as

      the therapy is not covered by my insurance right now.

      I do hope there is light at the end of the tunnel and that's what I'm reaching for, staying positive.  

      Feeling better and also getting used to the dizziness, as I feel I can tone it down somewhat now

      and not give in entirely to the dreaded feeling.

      I feel lightheaded when doing some activities so I modify what I do until I am more clear.  Also the feeling

      of walking on uneven ground pops up at times.

      I do think, as you said, doing your own research and self help does contribute to moving forward with this

      annoying disorder

      Thanks

      Pooli

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    • Posted

      I forgot to add this

      I notice when I do the eye gazing exercises that initially were troublesome and provoked very dizzy sensations

      now take less time to bring me back to the baseline feeling, so that makes me feel positive.  I know sometimes

      I am overdoing the exercises in the intent to get better faster, so my VTherapist did tell me to gage things

      better so as to make myself a little dizzy, but not to the point that it would take more than 30 minutes to get back to normal. Hope this helps

      Pooli

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    • Posted

      Hi Pooli,

      Thank you for sharing your experience. I’m glad to hear that you improving and staying positive which is really important. I noticed that anxiety making my dizziness worse sometimes. I’m not having any vestibular therapy/ exercise. Neurologist recommended Epley manoeuvre but it made me worse.  My vision is still blurred but none of the specialist paid attention to that. They simply were optimistic and keep saying nothing to worry as MRI clear, CT clear.  I have no private health insurance and to get specialists  appointment takes ages.  

      Well done to you that you modified your exercises. I think that is the way to success. Wishing you soonest recovery. 

      Zhibek.

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  • Posted

    Hi pool

    i have been diagnosed 3x with 3 different things.  Fist- in ER-BPPV.  2nd days hospilized -vestibular neuritis.  3rd- now vestibular migraines.  I also have been in vestibular PT since June.  It was very difficult at first.  Now it's easier and I have improved.  I am working on closing my eyes and balancing.  I was concerned with my second diagnosis of vestibular neuritis because i was on steroids and after months I wasn't feeling any better.  Brain fog, dizziness, moving eyes slightly would cause dizziness.  Numb hand Tripping over feet ect.  Every doctor kept saying I'd get better with time.  3 catscans 1 MRI all ok. Seen a neurologist-who was just awful. Useless appt.  my ENT tried and I asked her to treat me for vestibular migraines. It has worked.  I am now being treated by an otolaryngologist.  Lots of people here say neuro-ontology.  My advice is to at least see one of these specialists. Because so many of us have had several diagnosis before finding the right one.  And if you read the posts here most people, including myself had to advocate for self.  If I hadn't, I would still be in a fog.  

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    • Posted

      Yes, self advocating is the way to go.

      I am just glad I was able to have the MRI and VNG without opposition from my insurance company, which had

      been more oppositional a few years ago.

      I am glad that there is no worry about tumors or brain diseases.  And the VNG shows a loss of function, which is actually shows something, so it isnt that mysterious after all.

      I guess it is a waiting game of trial and error as well.  I know that the VT does help, but if there is an eye

      gazing exercise that makes me too dizzy and sick, I will not do it anymore, since I feel better without doing it

      Sometimes, I wonder if just not doing anything, would bring about the same end result which is to feel

      all better, though I would accept 90 percent better too !

      Thanks for your response

      I wish you continued success on your journey to good health

      Pooli

      Pooli

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    • Posted

      Hi pooli

      yes it's a crazy journey that can be mysterious and misdiagnosed time and time again.  I will say that I have been in PT since June doing balancing and eye exercises.  For the first couple of months I had to go home right after to rest my eyes all day.  My eyes would droop after and was very dizzy.  I had a hard time following simple instructions.  I still have difficulty with balancing but since starting the medication I see that I am returning to myself and really have little memory of June and July. I am now practicing exercises with my eyes closed.  I have no night vision anymore. Keep pushing and if it doesn't feel right move on to a new doctor.  Had I not, I would be in brain fog too.  The PT says that you will feel worse before you get better.  I am still very tired all the time but I understand that my brain is working overtime to stay upright.  But I can work full time now as before I could only work half time and even then was kinda useless.  So progress in small amounts is awesome. 

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    • Posted

      I thought it was like a cold and it would be gone in a few days!  Little did I know .. I've never been sick before so this was/is very strange for me.  

      I just keep pushing through, staying active, working out, not changing anything until I keel over I guess...lol

      glad I can joke about this all still, it is kind of amusing in a strange way.  I just keep talking to myself as it occurs and remind myself I am getting better, and do not fall into the trap 

      thanks so much for your very informative and supporting reply smile

      best wishes

      Pooli

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