Have had vestibular neuronitis since February 2019

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Hi

I'm new to the forum but unfortunately not to vestibular neuronitis. Symptoms started in February this year, woke up feeling like I was on a water bed and very dizzy when I got out of bed. GP diagnosed my symptoms but had to wait 6 weeks for referral to ENT (it might just go on its own I was told?). Went private to see ENT consultant who confirmed diagnosis. Have seen vestibular audiologist who suggested exercises which I have been doing since April and really thought I was getting somewhere, considering trying a phased return to work then out of the blue I had a full day of vertigo with severe spinning and vomiting with about a week of feeling awful. This made me nervous of going anywhere in case it happened again but after 5 weeks thought I was safe when it happened again. Both times it started early morning while in bed (as did original symptoms but without vomiting). At my latest audiologist appointment I was told I need to inform DVLA (have not driven since February) and that exercise is my only hope as damage to inner ear is permanent. This came as a shock but I think I was just being naive, and hopeful.

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7 Replies

  • Posted

    Hi Alison! sorry to hear you are still feeling like this. I've had VN for about 2/3 years now. I too was feeling dizzy and sick at first and driving was out of the question. I saw a consultant who diagnosed me with VN and was given a set of exercises to do which did seem to help, also I went for a walk if I felt up to it but I felt very odd like walking on a boat! I couldn't work so ended up having 6 months off work but I did feel better day by day. Now 2 and a half years on I am back at work, driving and trying to live a normal life but I still suffer with that funny feeling when walking ( think my brain had adjusted) I too am convinced that my ear is permanently damaged as I have mild tinnitus too but I'm not too bad with it . Hang in there, it does get better! Do you suffer with anxiety? I think it was stress that triggered all this . Hope this helps.

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  • Posted

    hi! I too have vn, was diagnosed 3 years ago. from what I was told, labyrintitis doesnt do permanent damage but vestibular neuritis always does...neuritis means nerve basically. BUT this doesnt mean a full recovery isnt possible. your good ear will compensate for your bad ear. I was 8 months in when I saw a specialist who told me I had vn but I was now dealing with the anxiety caused by the vn. if you research it you will see the two are closely linked. so my dizziness and brain fog was no longer vn but anxiety. I went on an anti depressant and only wished I had started sooner. I got my life back. I could drive again without feeling like I was on the verge of a panic attack. I even did a half marathon. I did a caloric test which showed I had 24% damage in my right ear. recovery is possible, and it's never straight forward there will be setbacks a long the way but this is all normal. hang in

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    • Posted

      Melody- what kind of antidepressant did you start? I am having the same issues (found this comment through one you posted years ago) and I'm on exactly week 9 of VN and I just started getting tinnitus too. My other symptoms are aural fullness, head pressure on affected side.

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  • Posted

    Hi Alison, no I don't do anymore of the exercises, in fact I found walking helped and I started going on a treadmill at the gym which was challenging! The more you can move, the better even though you might not feel like it . Hope this helps.

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  • Posted

    I feel for all of you. I just dont know what I have.

    I have been to ENT, CT Scan, thorough blood tests and just get told this is all in my head. I am fine when I wake up, just a big foggy headed and spaced out. But it gets progressively worse throughout the day.

    I was told I was depressed and had anxiety, but didn't feel it.

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