I had VN in 2009 - Here is my take on things !

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Darren’s Story

I am 45 years old and was diagnosed with Vestibular Neuronitis about in 2009 and after 5 years of searching for a cure/ fix I have finally come to the conclusion, there isn’t one. I have searched the internet high and low and I have never come across any success stories. Perhaps naively I thought that once people did recover, they just simply didn’t return to the forum(s) on which they initially posted to share their news. I am more inclined to think that they’ve just got to the point where they’ve just accepted it. When you comb through all the web pages, there are lots of do gooders who suggest this that and the other but unless you’ve had VN or Labyrinthitis, you don’t know what we are going through.

The thing with an inner ear disorder, is it’s ability to make your symptoms change over the months and years that follow and just when you thinking your brain has compensated you get a set back and you are back to square one again. I live in hope that that the key ingredient to my recovery….is time !

This post is just my take on my own personal situation and its not intended to come across as a rant or to be negative but when you’ve had this condition for as long as I’ve had, you learn one or two things and like to share this with people just like me as honestly as I can.

An inner ear dysfunction will without doubt cause depression and it will definitely cause anxiety and a doctor will confidently tell you that anxiety will trigger vertigo so you are on this merry-go-round (pardon the pun) where one symptom is fueling the other or so you are led to believe.

The facts are these:

An inner ear dysfunction will muck about with your vision. Your eyes have to overcompensate and do the work of your dodgy inner ear and if you are like me and as blind as bat, you’re poor eyes won’t know what’s hit them. Your eyes will feel constantly tired and achy because of all this extra work it has to do. You will also find you will become sensitive to light, strong colours, patterns and busy noisy places. if you are like me, you’ll find your visit to the Supermarket or DIY Store will make you feel vile. The fluorescent certainly lights don’t help.

An inner ear dysfunction will muck about with the way you stand. Standing still is something I have taken for granted but several things are vital and work together to help us do that simple task, ears, eyes, spine, neck, muscles to name a few, all sending messages to the brain to keep you upright. When something is not pulling their weight, you will get problems. If you are like me you will not like waiting in queues, you will not like standing in the same spot for too long. Standing in the same spot while talking to someone is almost unbearable. You will feel yourself swaying inside your own skin, you will want to hold onto something or be near something you can lean against but even that doesn’t offer complete relief of the vile unbalanced sensation that washes through you.

An inner ear dysfunction will make you tired/ fatigued and give you that foggy head. If you are like me you will go to bed at a reasonable time but you will still wake feeling as if you’ve been burning the candle at both ends. I can quite easily close my eyes at 10.30/ 11.00 pm and not reopen them until 7.00/ 7.30am, so on paper I am getting my hours in….but I still feel tired !! I put this down to the fact my body is running on 3 cylinders, instead of 4 and my brain is just knackered.

All doctors will tell you that we are all different and we all recover at our own rate in our own time. My own GP thinks its path for the coarse because she gets a bit of vertigo herself and I am not as young as I used to be. So that makes it alright then? I have had a neurologist who clearly thinks he’s too important to see me a second time (Tried to swerve me back to the Physiotherapist). More recently the GP wants to send me for CBT (Cognitive Behaviour Therapy) which I haven’t and probably won’t do. I refuse to believe that this is all in my head and talking about it will make it go away.

I have tried a Chiropractor and an Acupuncturist with no measurable benefits. They will tell you that their treatments quite often help with vertigo but it will take lots of time and the longer you’ve had the vertigo the more treatments you need. They don’t offer any guarantees and will take your treatment fees all day long. It’s so easy to fall into the trap of wanting people to listen to you and understand you, you start believing they can help you. The can help you with the secondary symptoms like achy necks and backs or nausea, anxiety and stress but they can’t help you with the primary issue.

There is no third party cure for this. VN & Labs, is the result of a virus that came, destroyed some balance cells or whatever and then buggered off again. What you are left with is the aftermath. The dizziness and the vertigo is simply the brain trying to fathom out what to do with you. Your senses are mismatched. Your ears don’t match for starters and then your eyes don’t match your ears. Your eyes are working even harder and if you have bad eyesight to begin with then you will suffer more. Then you are all hunched up and your posture is all to cock.

The destroyed balance cells aren't coming back, they are gone for good so we have to get used to what is left and work with that. The only cure is teaching the brain to deal with it and also learning to accept it and I think once we do accept it and stop chasing this idea of a cure, in time we will get over it.

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  • Posted

    Hi, Well i concur with absolutely e erything you have said above - i have had he same 'journey' since Ocy 2010.so coming up for for years. I agree with you on so many counts, the physios 9done hose, twice! for desenitising eercises - right! don't work)  I haven't eve been given a proper diagnosis, but am pretty sure i have the VN like you as you're are describing me in every way!  I tried Acupuncture and the first treatment (of a 12 week course at great expense) worked and for four days i had no symptoms, then they came back and the rest of treatments did nothing.  All the different meds made me feel worse.

    Also if the more i do physicacally, ie moving around etc or travelling on bus, train whatever, am fine at the time, but it's when i stop.  Also only have to have 'other' problems, ie headache, gutsache (i have IBS), neckace etc it makes it worse.  Also have Tinnitus which actually came a few years before, but i beleive you when you say it's a virus (even talked dr into giving me a week's course of anti viral pills - didn't work)- woke up one morning and there it was and has never  gone away.  I have to correct people (and drs) when they say 'dizzy spells' - uh, no, no 'spells', it's there 24/7, just slightly better in morning and gradually gets worse as day goes on until 10p and ned to take dog out for 2 mins i am all over the place.no sympathy from friends and family to speak of as when they see me they can't tel, they don't see me later when i got t bed, which i am about to do as soon as i finish here, and stick my head on a stationary pillow!

    I have mentioned to others on here a good video i came across on line (via Ved website i think) of a lady taliing to a roomfull of new nurses, explaining all out how people like us feel, our symptoms etc etc.  Very interesting.  She found out eventually she had a fistula, and reckons they cannot be seen on MRI's.  If you want to see it, PM me and i'll fwd it to you.

    I have even wondered about therapy with magnets, am so deperate!!

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    • Posted

      Hi Gill was going to pm you tonight  ,today I've purchased Magnets going to try them for a month. Great minds thinking alike hey . Worth putting on site as maybe someone's given them a go already.xx What say you Dizzy regarding magnets ?
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    • Posted

      I have yet to research it Dizzy, but i know that a lot of ailments can be helped with Magnet type therapy (ie in a small example the magnets that are used in writbands for travel/motion sickness), so i figure there could be something that could help us somehow, it's only a theory at this stage!!!
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    • Posted

      Hi Gill and Dizzy got a book sent to me free called Healing with Magnetic Therapy by Dr Sarah Brewer they called me yesterday AM  had a chat on phone I'm trying the various magnets free for a month in book it gives for Dizziness Headaches etc worth a go I say look this book up told female on phone about balance,tinnitus and rhinitis so soon as I get them will try that. Never know may help nothing ventured hey ? 
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    • Posted

      Hi they said try free for months trial then if thumbs up I will purchase them can't system fairer than that ,how often do you get offer to free trial something .So there up front no gimmick ,the book is good to informative about magnets and what they do. Think a month fair go.My balance was okay till I went to Osteopath for neck ache  2 days later it began had it ever since Dizzy another said went to an Chiropracter and theirs started. Coincidence don't know and she went not for her neck but something else and didn't know why Chiropracter went and treated her neck as well now she has a balance prob. Was gobsmacked when I read what she wrote.
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    • Posted

      They call you up after a month,no think cost would be £23 for so many Magnets.didnt register expensive through my tinnitus being sky high while on phone ,but you know how that goes with that prob.Just E mailed you x
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    • Posted

      yes i know some people have it after seeing chiros etc.  mine was more a virus i think and somehow it's screwed up the tubes or whatever in there.  But getting a diagnosis is like pulling hens teeth and dout i will ever get one.  they just don't want to commit do they?

      I ,will give these people a call i think and see if they'll give me a free trial as they don't mention it on the website (free trial i mean).  i've ordered the book and their confirm e-mail hasn't come with invoice for the 2 quid yet.

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  • Posted

    Same here Dizzy me and Gill talk about our Balance/tinnitus it's a massive problem,Merry,go round it is had the tinnitus now over 8 years and balance going on for4 yrs you name it I've tried it and I'm like Gill at an utter loss no cure I know out there and we've looked hey Gill..you both summed it up beautifully.people whose got neither condition haven't a clue what we go through daily living or should I say try to. A boat ride that never never ends. One thing with me I'm okay in car down to concentration weird hey but I count that as a blessing I'm affected being upright and walking from A to B Stops your life hey. Did find both of your post spot on to what I would have described this condition to be like in a nutshell Hope A dr looking through these sites have good read on this subject xx
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  • Posted

    Like many people with Vertigo, you get an achy neck/ upper back caused by hunching yourself and sometimes it can be quite painful. By accident I found that if I went to bed with no pillows, this aching was a lot less the next day and also my foggy head is reduced.

    To begin with it can be quite uncomfortable to try and get to sleep without a pillow because you are so used to having one but you do get used to it and I am sure it can't be healthy to sleep for 8 hours with a kink in your neck.

    Anyhow this works for me so I thought I would share it :-)

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    • Posted

      I to changed my pillows Dizzy really flat ones now,use to have memory foam one,you do end up without a crick in the neck when you change the pillows I agree to that. You get use to it after few days,won't go back to foam one now.Still get up balance prob nothing new there. Only get neck ache if bend head down for to long .
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