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provwise

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Registered: 01/23/08
Posts: 4
Reply with quote  #1 

Im new to this message board, but I've been doing tonnes of reading over the last couple days. You all seem really knowledgeable on the subject, and the surgery to cut the muscles in the ear and all that, so I thought if anyone can help, its you guys!


Here's my story. 5 years ago my symptoms started, and after seeing a number of doctors that had no idea what was going on, I saw a neurologist who diagnosed me with epilepsy. The diagnosis was never concrete however, because my MRI and numerous EEGs all came back completely clean. My neurologist was also never very interested in persuing possibilities, and my subsequent follow-up appointments with him always went the same: "Any new symptoms? Have things got worse at all? What dose of medication are you on again? Ok, see you in 6 months."

My episodes would come and go, and it seems they come in clusters of a few at a time, then nothing for another year or so. At its worst, I had three clusters in the period of about two weeks, but like before, it disappeared for another year or so, then popped right back up again. My symptoms come on all at once, and very suddenly out of nowhere. They last about...30 seconds maximum, but when I described them as coming in clusters, they would sometimes happen one after another after another, sometimes 7 or 8 all in a row with about a 30 - 60 second interval between them.

My symptoms are as follows, and they occur only in my left ear:

A fluttering/vibrating sound and feeling. The sound isnt loud at all, but very unignorable.

A feeling of disorientation. Not room-spinning dizziness or anything, but the feeling that I have to sit down immediately to feel secure.

My vision goes slightly flat and 2 dimensional.

I can feel a tingly warmth deep in my ear that sort of spreads down my shoulder. This sensation always makes my shoulders and neck tense up in the same way that they would if someone was tickling my neck/spine with a feather.

The vibration/fluttering sensation always pulses, but not rhythmically. The 'beat', so to speak, is erratic and quick at first, but slows down until it fades away and all the symptoms stop.

Any sounds that occurr when Im having one of these episodes, ie. people talking to me, makes me feel very uncomfortable, like the sounds are hitting my ears too hard.

My ear is also, in every day life, sensitive to sudden, sharp noises, like glasses clinking, a cap gun being fired, two pots hitting together. Its almost like I can FEEL the sound inside my ear.

Given all of these symptoms, and the fact that they just kept coming back given enough time, I began to grow restless over the diagnosis of epilepsy I had recieve, especially because my family doctor had always said it never struck him as a classic case of epilepsy. I thought, given the nature of the symptoms, the fact that its always one ear, and the fact that its always the same ear, I should persue things further.

I finally got an appointment with an ENT specialist, and after answering a barrage of questions, he was quick to the diagnosis of middle ear myoclonus, adding "What else could it be!". He seemed faily sure of his diagnosis, and when I came home I immediately began researching it on the internet.

After extensive reading, however, I havent been able to find anyone with the same symptoms as mine. I also dont have any crackling, popping, or 'blown speaker' effect that I've read much about on this site. Many people have also reported that loud noises trigger it, without fail, but I've been around plenty of loud concerts and whatnot, and it has never triggered an episode. I actually can't pinpoint ANY triggers, despite almost 5 years of fine-toothed-combing.

It seems that everyone on this site is VERY knowledgeable on the subject, and I would very much appreciate any input you can offer. I've had this mystery hanging over me for almost 5 years now, and Im at the point where I need to get it solved to regain a bit of sanity. Anyone who has any comments on my symptoms, your symptoms, or even just your two cents, I will be forever in your debt.

Thanks!


Tim

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Reply with quote  #2 
You should find an otologist and ask for an ENG exam (cold-warm water test) to see if there is an overactive vestibular connection as the clonus appears to be stimulating your vestibular and optic system.

A neuro otologist who specializes in inner ear disorders.

Marsha Johnson
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LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #3 
Hi Provwise, (((( Smiles ))))

Lots of people on this board over the years that have had fluttering
vibrational, twitching, movements, spasming ears....

And in some cases there are some differences that I have noticed over the
years....

My spasming inside my ears didn't have anything to do with a booming noise,
crackling,popping ect.. Though I have had/have some of thoses sounds heard
in my ears right now....

With my spasming if I heard anything and it really didn't come with any inner
noise for me except static if any.. Plus I had the EEEEEEEEEE thing....
It mostly had to do with the outer sound's....

And with louder noises it came like a punching pounding effect like sound
physically attacking my ears.. But with softer sounds it came with more
of a spasmodic effect to theses types of sounds as well...

And I could actually feel the sound happening inside my ears...
The sound was not outside my ears but expirenced inside my ears like it
was happening inside.. The sound played in there....
At one time no matter how far away.. If it was heard....
It was really bad at one time.....

Along with this came the vibrational rumbling hearing of sounds...
Plus I had the echoing effect too... Of outer sounds....
At one time....  

Quote:

My ear is also, in every day life, sensitive to sudden, sharp noises, like glasses clinking, a cap gun being fired, two pots hitting together. Its almost like I can FEEL the sound inside my ear.
 


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Take Care

Lynn
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LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #4 
Yes.. (((( Smiles ))))

And I had that too.. But it made me more then uncomfortable...
I had a bad case of hyperacusis it sounded super duper loud..
Tinny, sharp, slicing, ect..... Not for you it seems though...  

Quote:

people talking to me, makes me feel very uncomfortable, like the sounds are hitting my ears too hard.



But I didn't have the dizzyness or vision thing..
And plus I new what was triggering it and you don't though you seem to
have a sensitivity to certain sounds.. But not loud ones.....

Yes.. For you.. It sounds like what Marsha wrote is a good idea to have
checked out.. Just in case.....

That symptom for me got better.....
It almost came back just one time recently like a sensitivity after a length of loud noise exposure..

Like what you wrote about with the dishes ect...
But cleared up after awhile and hasen't come back but....
It made me think about it alittle about what maybe I shouldn't do......
Shouldn't push to much....
But....

Think about what Marsha wrote....
She's the ear expert on this board.... (((( Smiles ))))   

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Take Care

Lynn
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provwise

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Registered: 01/23/08
Posts: 4
Reply with quote  #5 
Thanks to both of you, Marsha and Lynn, for your advice!

Marsha, I've only heard one first person account of the ENG test, and its from a relative of mine who has the tendancy to over-react to this sort of thing, but she insists it was the worst experience of her life. I know that it is true that the test can induce vertigo, but I cant find anywhere anything that says how often it does, or generally how unpleasant it can be/usually is.

Ill do what needs to be done to get to the bottom of this, but I just want to know what Im in for!

Also, if it is what you suspect, and I do have an overactive vestibular connection and the myoclonus is stimulating my optic and vestibular systems, is there any fixing that, or is it just an answer to the puzzle?

The most discouraging thing is that the typical treatment, according to my ENT, is Tegretol, and since this was originally diagnosed as epilepsy, thats what I've been on! Im now at the max daily dose of 1200mg, so that essentially doesn't leave me anywhere to go.

I have an Auditory Brain Stem Response test tomorrow at the hospital. I read up on it and am glad it will be a piece of cake. It might not be the most pleasant thing, considering my affected ear is sensitive to sudden sharp noises, but hopefully the "moderately loud clicks" (as described by my ENT) wont be anything to worry about.

Ill keep you guys updated! Thanks so much for your interest
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Mestermann

Registered: 01/15/08
Posts: 8
Reply with quote  #6 
Dear Tim,

I am new in here, too, and like you, I am happy to have found this board. Though the information and advice can be somewhat contradictory, probably due to the fact that there may be varying reasons for these symptoms, there is SO much useful information to be found, from termina to treatment suggestions. It is also comforting to know that one isn't alone with this thing.

I have had this thing in my ear on and off for almost 20 years, and my symptoms are almost identical to yours, except I get them mostly in the moment of falling asleep. The sounds and pulsations in my left ear wake me up, and I have to get up and listen to some white noise, e.g. running water to calm them. Then back into bed. Then the same story over again - if I'm unlucky, this can repeat itself 6-7 times before I finally fall asleep; or rather, lose consciousness from exhaustion, I think.

It's positively torture, depriving me of a good night's rest for weeks, sometimes months. Only occasionally do I get these symptoms being awake.

I am currently seeking professional help, here in Norway as well as in Germany, since the predicament has reached a point where it has become unbearable for me and my family. I will indeed keep you posted as to what suggestions and treatments might come out of it, especially since your symptoms were so uncanningly alike my own. I am also very interested in hearing (no pun intended) what comes out of your search for a diagnosis and a treatment. Though one thing is certain: It's not epilepsy. And it is not in your mind, either. To quote myself from a recent message: Hearing voices would be quite nice, for a change.

Good luck and keep us posted.
Erik



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When my ears bop, I bop
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provwise

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Registered: 01/23/08
Posts: 4
Reply with quote  #7 
In the last 5 years, I've never found anyone with the same symptoms as I have! What tests have you had done so far, and have you been given any sort of diagnosis?

Im interested to hear more about your symptoms. Care to go into any more detail, Erik?


-Tim
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