meniere

Author Topic: Bouncy vision and burnout  (Read 5502 times)

Offline jojo

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Bouncy vision and burnout
« on: Sep 07 2012, 08:36 AM »
Morning everyone

I am a little confussed about the bouncy vision side of Menieres and Burnout.  I remember seeing a post on this forum which included both.  I was just wondering if  these go together.  In otherwords if you get bouncy vision does that mean you have reached burnout ?

I remember reading a post which was written some time ago.  It was the reply by Simon that mentioned bouncy vision and burnout. So any help from Simon or others would be much appreciated.

Thank you.

Jojo

Offline chrissieg

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Re: Bouncy vision and burnout
« Reply #1 on: Sep 07 2012, 09:14 AM »
I dont think they necessarily go hand in hand. You can get bouncy vision at any point in an MD journey although several people have described it immediately following gent treatment or labrynthectomy and slowly overcoming it.

Burnout is a controversial topic. It seems overwhelmingly to be something that doctors tantalise us with, probably so we dont give up hope but with no time scale offered. On the other hand, no-one reports actually feeling confident they have reached that mythical stage. Remission is usually temporary albeit sometimes for many years.
Chrissieg

NEWOSA65

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Re: Bouncy vision and burnout
« Reply #2 on: Sep 07 2012, 11:34 AM »
Hi Jojo,

We normally have bouncy vision after the big ops such as labyrinthectomy and vestibular nerve section.  However for those of us who have just had the one side done, then the bouncy vision normally clears eventually as the other good ear takes over the new role of balance.  The amount of bouncy vision we have depends on how much balance function we have remaining before we have the VNS or Laby surgery  (i had a small amount of balance left so my bouncy vision was negligible and now i am completely over that).

If we have both sides done (double VNS or double labyrithectomy as some people on this forum have had) then for sure you will have permanant bouncy vision.  Having said that this can be improved immensely and those who have had both sides done are 80 - 90% clear of their bouncy vision!  It really depends on how good your eyesight is (eg., if you have a lazy eye then your bouncy vision may never improve).  Dizzyme on the forum claims that he does not even notice his bouncy vision now!

With gentamicin,  in most cases this is not totally destructive hence the need for top up injections!  (any hearing damage is permanant though!).  The labyrinth and nerve of balance is still intact so maybe bouncy vision in this case would not be an issue?

And i think same applies to burn out (if it exists!), the brain gradually adapts over the years until burn is reached(with no sudden changes like with VNS or laby) and so maybe no bouncy vision here either?

Hope this has helped... prob with burn out is 'how many years of life do we lose before this day arrives?'

Simon :-)


Offline jojo

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Re: Bouncy vision and burnout
« Reply #3 on: Sep 07 2012, 12:27 PM »
Hello Simon

Thanks for getting back to me so quickly.

To be honest I am not sure where I am with this pesky disease.  Maybe you could throw a light on it for me.

Here goes!!!!! My story so far:-In 1995 roughly I was diagnosed with ME following a nasty Viral infection.  A little later maybe 1997 and after a few more viral infections I noticed that I started to have a few problems with my balance.  I also noticed I had Tinnitus and started to loose my hearing in my left ear. I also had what the consultant said was vertigo although to me it was quite mild.  This consultant was at the ENT hospital in Kings Cross at the time.  I had an MRI scan following this scan I was told I had excess fluid in my inner ear. I was put on Betahistine for a year or two until things settled down a bit. Over the years I have lost about 60/70% of my hearing in my left ear. This was confirmed with hearing tests I have had. I was also given a masking device for the Tinnitus but this did not help much at all.  My right ear was not affected at all during this time.  Years went by and only the ME remained and I also had the odd balance issue of occasionally loosing my balance but this was rare and feeling as though I was walking on a floor made of sponge.

2010/2011 I started to have odd dizzy spells and mild short bursts of vertigo again.  I just ignored it and got on with my life.  Really was not troubled by it too much.  I just put it down to tiredness and my previous ear problems.  It was so mild I did not even go to see my GP with it, until this march that is.

In March I had a viral infection and noticed that my ears felt full especially my left ear. It was thought I had Sinusitis and I was given antibiotics  Both ears were not full all the time, it was on and off and worse in my left ear. First I was diagnosed with a viral infection. Then Sinusitis.  Then when I started to get vertigo I was diagnosed with BPPV.  The  vertigo attacks were making me sick and one of them lasted hours.  It got really bad and my GP sent me to see a ENT specialist.  To cut a long story short.  I had an MRI, all was ok there.  Was put on Betahistine 8mg 3 x a day, I now take double that dose as advised by the specialist. I have just started to take a water tablet as well. My recent hearing tests have showed I have severe hearing loss in my left ear.  All I can hear now in my left ear is a chain saw (just to give you an idea of the level of my hearing on my left side).  I am waiting to have a hearing aid now and waiting to have hearing therapy what ever that is.

The reason I have questioned burn out is that the fullness I get in both ears is almost constant now. Is it possible to reach burn out in one ear only for this pesky disease only for it to start up in the other ear. The reason I question this is that I have had many years without vertigo and fullness.  I now have low Tinnitus in my right ear too along with the fullness.  Many years ago I did not have any bouncy vision, but I do now.

Hope this has not confussed you to much.  I find it difficult with computers because of the bouncy vision.  I have struggled to complete this post to you but made it in the end. HOORAH!!!!

Look forward to hearing from you.  Thank you!!!

Jojo

NEWOSA65

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Re: Bouncy vision and burnout
« Reply #4 on: Sep 08 2012, 10:14 PM »
Hi Jojo,

Sorry for late response.

Your background sounds typical of Menieres - you have had many years without symptoms to then notice periods of fulness/tinnitus again is just how this illness is i'm afraid!

I cannot be sure from what you have told me but I doubt you your left ear has reached burn out as you have had many years without symptoms? From what i have seen it seems that burn out is not reached for decades.Obviously the attacks do gradually destroy the inner ear (organ of balance) and our hearing but most sufferers seem to lose their hearing well before their balance mechanism is destroyed!  If you have bouncy vision maybe your brain has not rehabilitated from the attacks?

Regarding your other ear, i was told years ago that there is no link between the ears so i doubt that your current symptoms in your good ear (right) is anything to do with your affected ear.  Its a bit odd that you have had yet another virus and that your other ear is now showing symptoms.  I have tinntus in my good ear -it sometimes freaks me out as have just had a laby op in my affected side which has resulted in complete deafness BUT a life now free of attacks!  My good ear like yours worries me lots and lots as this is now my only hearing side and balance side.  Mind you i would sooner have no balance rather than lose my hearing!

I was advised to not worry about tinnitus in my good ear - like you i may never go down with Menieres in my good side, if i do I will cross that bridge later but i shall not be accepting it as i did before for years on end!

Funny you mentioned the thyroid problem - i have not had my gland destroyed (my sister has) but i do have a biochemical thyroid problem which is related to hrmones binding to blood protein etc which has given me a raised T4 thyroid hormone!  This cannot be treated BUT my sister who has the same poblem did have treatment which messed her life up totally!  The condiion is not supposed to cause any problems but it was revealed later that it causes nervousness, anxiety, autoimmune problems, potential heart problems eg., Tachycardia, palpitations and over the long term heart damage!  My sister (twin) has pressure/tinnitus in her ears (has not been diagnosed with Menieres as yet) as well!  makes me wonder how many of us sufferers of MD have this raised T4 thyroid condition which is not noticed without special blood tests.

Sorry for essay!! LOL

Hope this helps Jo,

Simon

Offline shazza

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Re: Bouncy vision and burnout
« Reply #5 on: Nov 16 2013, 12:19 AM »
I do!! I started with thyroid problems, then liver problems then dry eye syndrome...all autoimmune.....now MD and ive been told that the low pressure in my left ear is also the disease.....ive been tod that all my conditions are rooted through immune problems.............not been a good time :(

Offline Elaine

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Re: Bouncy vision and burnout
« Reply #6 on: Jan 16 2014, 01:57 PM »
I've got tons of it happening since my sac decompression .I'm assuming it's cos they've been in there disturbing things .It's more common in those that are bilateral as both ears and eyes seem to be doing different things at different times LOL!