Bilateral vestibular dysfunction

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[XAP]Bob
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Bilateral vestibular dysfunction

Postby [XAP]Bob » 19 May 2018, 8:40am

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

Postby NATURAL ANKLING » 19 May 2018, 8:54am

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....
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[XAP]Bob
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Re: Bilateral vestibular dysfunction

Postby [XAP]Bob » 22 May 2018, 10:52am

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

Postby reohn2 » 22 May 2018, 11:05am

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

Postby Heatherdrinkstea » 11 Oct 2018, 8:12am

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

Postby [XAP]Bob » 11 Oct 2018, 8:34am

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

Postby NATURAL ANKLING » 11 Oct 2018, 10:40am

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.
Priority Is Still 500K In 24......Just Dreaming..............Stay Focused Guys And Keep Sharp.....
You'll Find Me At The Top Of a Hill...............Somewhere

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[XAP]Bob
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Re: Bilateral vestibular dysfunction

Postby [XAP]Bob » 11 Oct 2018, 11:01am

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 dans le guidon
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Re: Bilateral vestibular dysfunction

Postby nez dans le guidon » 23 Oct 2018, 9:57pm

Good luck with that, Bob