Vestibular Neuritis 8 months later report and heads up post

Edited , 12 users are following.

Hi all, I will try to be short. 8 months ago I got struck by typical syndroms of Vestibular Neuritis (I didnt know then what it was and never heard of it so I panicked a bit). Typical smyptoms (dizzines, lightheaded, sleepy, wanted to vomit, problems in abdominal part etc). Only first day I experienced 2 short and strong vertigos. First few weeks were like hell as you all can imagine (some of you also get through this). On top of that I was going on summer holiday in that state as I didnt want to spoil the vacation for my kids and wife. Hell on earth tbh. Only after 4 months I "fully recovered" (smyptoms were weaker, gradually as time passed away). Last few months the situation is much much better, I still have (from time to time, let say every 2 or 3 weeks) vsymptoms but that is in really small "doses". Almost that I barely feel that...

What is VERY IMPORTANT to know for all the NEW PATIENTS. This thing is not a super serious illness. You wont die from it. It WONT last forever in 95% of cases (note: the older you got struck the less chance there is). So all you need is to prevail and to be strong (mostly in your head since the illness is influencing our brain, our mental state). The center of it is an inflamed inner ear which is responsible for our cener of gravity..this is why the symptoms are awful....So dont worry you will be getting better. Worst part for me is that my doctor told me the smymptoms usually last not longer than few weeks which ofcourse isnt true at all. For most ppl it can last much longer. This I learned on the net reading articles from doctors who are experts in VN.

If you want you can tell me your experience, ofcourse..

All the best and hold on..

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  • Posted

    Hi...thanks for this post. It's given me hope. 5 weeks ago I had 3 short spins in a day. Straight to Drs who said BPPV. 2 weeks later went back to Drs who said as I'd had no other spins it's not classic BPPV so now have to go to ENT (and have an MRI just to rule out anything else other than ear). I now just have a sort of whoosh feeling in my head and just generally feel of kilter, like I'm wobbling or my head is wobbling. I also sleep well now lol. I've been so worried about this as a single parent of 3 with no support network. Anxiety hasn't helped and I don't walk as far as I used to (having to rely on son to drive me to work). I really hope I improve soon.

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  • Posted

    I have been recently been told by the neurologist that I have damage to the vestibular nerve. Therapy to help live with it so I don't feel the effects It can improve on it's own

    ?but no time limit for it to occur. I am not able to drive because I never know when

    the dizziness will get worse. What a horrble thing to have

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  • Posted

    You're very lucky, I have had it for 7 years.. some people,have it shorter, some even longer than me.  Too many variables to generalise i'm afraid.

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  • Posted

    I have vn too and did caloric testing which showed 24% damage. I'm on month 10 and 95% better but struggle with anxiety now and like u I also have a few blips with issues but they are short lived.

    Mine started in April last year, woke up to the room spinning around me. Felt really dizzy for a good three months. 9 weeks into it I got tinnitus which is still there all the time. I struggled in busy stores but push myself to just do it. Did you do any vrt?

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  • Posted

    Thanks for your post, Tvrdi.

    i'm into week 6 and not enjoying it much at all.  I'm in my 50s and so I expect the recovery will take longer. I work in a busy medical clinic and dealing with the dizziness - worse by mid afternoon - can be challenging. I walk every evening and do vestibular exercises to try and retrain my brain. I even have a practice balance beam!  It really takes a lot of determination and patience (don't always have enough of that).  I also get anxious at times. Anyway, I am still surviving and continuing to push through it.  I think the hardest thing is knowing when you should just rest. My mantra right now is that if it makes you dizzy, repeat 5 times. Haha. 

    Thanks again for your positive post. 

    Best,

    linda

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  • Posted

    What a great  message to help people who think they will never get better with this. I had the same experience as you.  I have had 3 epeoisode over the past 4 years and I alwasy got better and symptom free.
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    • Posted

      That is really strange as usually VN is one time experience, in its full strenght, ofcourse. But experiences are very different. I have a friend who had stronger symptoms than I did but he recovered after just 4 weeks...

      btw folks sry for my english, its not my native language

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  • Posted

    I forgot to add that some exercises can be found on the net. Im not sure if they help and didnt do them. Our brain is "good enough" to compensate for the "loss of information" after the inflammation of the nerve of the inner ear which is responsible for our balance. But the brain needs time and the recovery depends of the damage done.

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