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Madmaggot

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Posts: 26
Reply with quote  #1 
I have a peculiar symptom and for seven years have been trying to find out what's causing it. I've had brain scans and ENT visits etc. no one has been able to help me and I've researched the net to no avail.
I get a loud clicking metallic noise in my left ear which can go fast or slow or even be just one click. When it's very fast it can be like static or crickets and be loud enough to make it difficult to hear speech. This problem is annoying but not the worst of it.
The worst part of it is that synchronous with the noise my eyes jump. I can't fix my focus as they dance all over the place. It can become bad enough to make me vomit and I've had episodes of violent vertigo that prevent me even walking to a toilet. The noise throws my balance off so that when it is bad I walk with a stick and stumble a fair bit.
It is not constant but comes and goes sporadically day and night and has done for seven years now.
Has anyone ever heard of anything at all like this? Please let me know as I do not know where to look for answers.m is it a nerve problem in the brain, inner ear or what. I also get hyoeracusis in that left ear.
Thanks to anyone who makes the time to reply with any help at all.
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Paulbe

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Posts: 176
Reply with quote  #2 
You're a Kiwi aren't you?  Seen you 'round elsewhere, who could forget a cool handle like "madmaggot"?

Have you looked up Tullio's phenomenon?  Sue at the other forum has a post about it.  Some elements of what you describe seem to fit with it.


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Madmaggot

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Posts: 26
Reply with quote  #3 
Yes. I'm trying everywhere.
Have read about tulios but isn't it caused by external noise? The only time it happens is with the noise in my ear - not external "real" noises.
I'm wondering if it could be something like a nerve actually moving inside the ear like a spasm and causing the same spasm movement in the optic nerve. The eye movement is exactly in time with the noise and the loudness. If quiet the eyes move slightly but if loud they move more violently.
But perhaps I should read more about tulios phenomenon again.
Thanks for your reply.
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Paulbe

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Reply with quote  #4 
I confess I don't know as much about it as I should because we all tend to troll for information about our own situations admittedly.  Nevertheless I would wonder if it needs to be external noise. or simply the perception/reception of sound, and whether that sound is being generated internally or externally.  I suppose its feasible that if a muscle spasm is strong enough (TTTS and/or SM) it could transmit a message that crosses over to other nerve pathways.  Exotic stuff I know, but given the paucity of settled knowledge in these areas we are often left with speculation.
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briann

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Posts: 141
Reply with quote  #5 
I am not a doctor but I believe you should see the ENT again about this. Without knowing all of your symptoms, I would think maybe you have a perilymph fistula (eye movement with click, vertigo) and stapedius myoclonus (what is causing the click). The ENT will know much more about this than me. They have fistula tests and other tests they can run.

Your eyes have some direct control from your vestibular system to help track as orientation changes. If the fluid in the ear is getting pushed in the vestibular canal, then the eyes would move. Generally fluid should only be pushed to the cochlea because there is a flexible membrane at the end to give the fluid somewhere to go. The vestibular canals are solid and are not supposed to have fluid movement from compression, just orientation changes. A perilymph fistula would be a leak where fluid can escape when it's not supposed to. Another cause for fluid moving in the vestibular canal when it's not supposed to is Superior Canal Dehiscence. This can be detected on a high resolution CT scan. There are treatment options for these.

-Brian
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briann

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Posts: 141
Reply with quote  #6 
Is your hyperacusis with or without ear pain? Which came first, the clicking/eye movement or hyperacusis?
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Madmaggot

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Posts: 26
Reply with quote  #7 
Thank you Briann. I have had countless visits with the ENT and all the tests and scans you can have. I also had thin bone show up on one of the scans for SCDS but no actual dehiscence and ENT said these symptoms are not from the thin bone. At my last visit I was told not to come again unless I developed any new problems. I think this is quite enough so I'd rather not develop anything new
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Madmaggot

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Posts: 26
Reply with quote  #8 
Oh sorry, my hyperacusis is not painful I don't think. It's difficult to describe and is not there all the time. I suppose discomfort would be the word for it.
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briann

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Posts: 141
Reply with quote  #9 
Quite enough is right. Maybe time for a new ENT doctor?

1. Which direction do your eyes move? side to side? Up and down?
2. Did you get an acoustic reflex test? If so did you experience these symptoms (eye movement or dizziness) during the test? This test gets pretty loud and is too much for many of us but it is a standard test that invokes a contraction of the stapedius muscle. If that was causing the click and vertigo it may show up on this test. 

-Brian
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Madmaggot

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Posts: 26
Reply with quote  #10 
They go up and then down mostly but also twist clockwise and shake side to side. Basically they can bounce all over the place. I had so many tests I can't remember them all. The cold and warm water in the ear. Nothing. Not even normal reactions and it was only suggested that my body has learned to suppress the usual reaction to the water because I'd had so much vertigo.
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Madmaggot

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Posts: 26
Reply with quote  #11 
I would see a new aENT but I have no insurance so in the public health system you go to who you are given and aren't given a choice.
If I went privately it would be hundreds of dollars for one consult and thousands thereafter. :-(
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briann

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Posts: 141
Reply with quote  #12 
Up and clockwise seems to be what would be expected with the SCDS. Do you ever notice the clicking/eye movement when starting to speak or after speaking? 


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Madmaggot

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Posts: 26
Reply with quote  #13 
On rare occasions I do when it's been super bad. But hey! I was on the tinnitus support website and a dr there suggested I see a dr Searchfeild at our university of Auckland and a neuro ophthalmologist he'd heard of. So I emailed this morning saying I had no money to pay for an appointment but had he ever heard of these symptoms and would they be weird enough that he'd be interested in seeing me for free? Well guess what! I'm officially weird!
He answered almost immediately and said if I'm willing to be a research subject and papers written about me there'll be no charge! So I have agreed.
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briann

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Posts: 141
Reply with quote  #14 
That's great! I'm so happy to hear that [smile].

Good luck!

-Brian
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Paulbe

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Posts: 176
Reply with quote  #15 
That is a great story Mad-one.  That's as good as you can get.
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briann

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Posts: 141
Reply with quote  #16 
I just came across Oculopalatal Myoclonus. Eye movement and clicking are symptoms.

http://www.dizziness-and-balance.com/disorders/central/opm.html
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Madmaggot

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Posts: 26
Reply with quote  #17 
Thank you. Yes I discovered that a few days ago and I think I may have that as I realise there is also clicking at the back of my throat on occasion and wondered what it was. Feels like a twitching nerve. Also my tongue sometimes. Usually notice the throat or palat click at night when resting in the quiet but this is not the same click I hear in my ear although it still could all be related. Had 3D scan of my head and neck last week and discovered my jaw and skull deformed - might explain a lot. Yes oculopalatal myoclonus might be something to do with all this.
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