Bilateral vestibular dysfunction

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[XAP]Bob
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Bilateral vestibular dysfunction

Post by [XAP]Bob »

I’ve mentioned a little bit on the forums that I’ve had a rough year...

In February I suffered a severe auto immune attack which has basically wiped out my inner ear (as well as impacting my liver, but that seems to have responded well tonsteroids).
I now have fluctuating hearing loss (currently moderate to profound) and no *measurable* vestibular function.

That measurable part is significant, because unlike vision and hearing there is no direct way to measure vestibular function - it’s a ‘silent’ sense and is buried deep within the head. There is a chance that there is some, very low level, residual function, and on that basis physio is trying to adapt what might remain.
However... my balance doesn’t appear to have responded to steroids at all...

This is a serious long shot because of the rarity of condition and symptom... but is anyone else cycling with bilateral vestibular issues?
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.
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NATURAL ANKLING
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Re: Bilateral vestibular dysfunction

Post by NATURAL ANKLING »

Hi,
I know nothing and have never heard of it, sounds rotten bad luck, I wish you well with your recovery [XAP]Bob.

I have had slight hearing loss once, I was surprised how depressing it can be, how I was affected.....how I felt....
NA Thinks Just End 2 End Return + Bivvy - Some day Soon I hope
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Please forgive the poor Grammar I blame it on my mobile and phat thinkers.
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[XAP]Bob
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Re: Bilateral vestibular dysfunction

Post by [XAP]Bob »

Hearing loss is incredibly isolating, it's very hard work to keep saying 'pardon' to everything anyone says, you just end up letting it slide and checking out of the conversation...

The vestibular dysfunction however is pretty weird. You can imaging being deaf (put your fingers in your ears) or blind (shut your eyes) but there is no way to image having no vestibular system... It does so much stuff silently.. Like keeping your eyes pointing in the right direction when your head moves (which it does, alot).
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.
reohn2
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Re: Bilateral vestibular dysfunction

Post by reohn2 »

Bob
Like N.A. I'd never heard of it before and have no idea how it would effect me.
I can only sympathise with you and your unfortunate problems and say I hope it responds to treatment,get well soon.
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Heatherdrinkstea
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Re: Bilateral vestibular dysfunction

Post by Heatherdrinkstea »

Hi, I realise you posted a little while ago but if you're still reading...

I was diagnosed with Meniere's Disease earlier this year. It is a disorder of the vestibular organ causing hearing loss and balance problems.

I had a little while where I was too poorly to ride but when I did get back on my bike I was very wobbly (and fell off). Saying that the best thing I have found is practise. The consultant I saw talked about retraining the brain to cope and gave me some exercises to do as well. I do know that the more I do the better able my brain copes with the balance disorder. The only time I really struggle at the moment is in the dark because my balance relies solely on my vision so no lights = no balance and I cannot walk in a straight line.

I hope my story gives you some hope!
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[XAP]Bob
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Re: Bilateral vestibular dysfunction

Post by [XAP]Bob »

I’m still here ;)

As far as we can tell I have no vestibular function at all, Intechnically can ride a bike - but only in good light when I can concentrate on the floor two metres ahead of me to the exclusion of all else. That’s not very realistic though...

Do you have any balance function?

I’m using ‘barefoot’ shoes - they’ve made a huge difference to my ability to walk.
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.
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NATURAL ANKLING
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Re: Bilateral vestibular dysfunction

Post by NATURAL ANKLING »

Hi
That sounds like a disability.
I can’t imagine that.
Along the lines of in a swimming pool not knowing Up or down.
Touching the sides but not being able to grab hold.

(Typed using my voice) ha ha.


Good luck Bob.
NA Thinks Just End 2 End Return + Bivvy - Some day Soon I hope
You'll Still Find Me At The Top Of A Hill
Please forgive the poor Grammar I blame it on my mobile and phat thinkers.
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[XAP]Bob
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Re: Bilateral vestibular dysfunction

Post by [XAP]Bob »

Yeah - swimming is potentially dangerous...

I have been swimming a few times, but not without a spotter (someone swimming alongside me focussed purely on my safety).
In a swimming pool the bottom and sides tend to look the same (just tiles) and of course there is no sensation of weight on any particular body part - so I am left with absolutely no idea which way is up. The best I can do is blow some bubbles.
If my goggles failed at any point I'd be in real trouble! (hence the spotter).


I walk with Nordic poles (much better for me than traditional walking sticks, they let me walk with my back upright and easily give me a much wider 'stance' when I need it), and 'barefoot' shoes. Still look like I've had several pints more than I should have done if the ground is anything other than perfectly level and flat (or if anything catches my eye). Soft ground (things like welcome mats, or grass, gravel or...) is especially challenging, as are slopes 'across' my desired travel direction.

As to the "that sounds like a disability"... it is. It's blue badge territory, particularly evident anywhere from approaching dusk or before the sun has really got decently into the sky (i.e. significantly more than just dusk to dawn) or outside - pavements are never flat and level...
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.
nez
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Re: Bilateral vestibular dysfunction

Post by nez »

Good luck with that, Bob
RS1
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Re: Bilateral vestibular dysfunction

Post by RS1 »

I had this hit me last April. This is going to take a long time to get better. Could not stand up for 2 weeks let alone walk, etc

It took over 6 to get to a 85% Recover point. What worked for me might not work everyone. I spent a lot, around 3k seeking Private Opinions. There are lots of vestibular training exercises' on the Net that really do help. Also a change in diet also.

You should visit these guys below. They are not expensive, after a check over he gave me a diet and exercise programme. Now after 10 months I am almost back to 100%. It will take time. Good Luck.

https://www.dizzycareclinic.co.uk/vestibular
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[XAP]Bob
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Re: Bilateral vestibular dysfunction

Post by [XAP]Bob »

Had what hit you?

(Stable) Hypofunction has a reasonably well defined recovery path - hopefully one you are well along.

Complete lack of function is fundamentally different, there is nothing to work with :(
Despite 5-6 months of diligent VORvexcercises there has been absolutely no change in things like my head thrust results.

Most of my treatment has been with a consultant and a vestibular physio who are absolutely world renowned - the benefits of health insurance do kick in occasionally.
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.
RS1
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Re: Bilateral vestibular dysfunction

Post by RS1 »

What hit me.?
Bilateral Vestibular neuritis......
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[XAP]Bob
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Re: Bilateral vestibular dysfunction

Post by [XAP]Bob »

Nasty - Hope you don't get struck again...
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.
RS1
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Re: Bilateral vestibular dysfunction

Post by RS1 »

Thanks,
I still don't know a to why it came on. The thing is with this type of problem that not everyone's symptoms are the same. It was only when I saw the Chap that runs the Clinic above, that I received a correct interpretation of the problem. Along with a way forward. Its all this Chap does day in day out is deal with Vestibular Problem's.
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[XAP]Bob
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Re: Bilateral vestibular dysfunction

Post by [XAP]Bob »

Yep - mine was abrupt and incredibly severe... So I ended up at a vestibular specialist very quickly...
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.
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