Otolaryngology with MS

Has anyone seen a ENT specialist in the process of their dx?

I started my third "flare" in June and with it came fluttering in my ears, a sensation of pressure changes, hearing fluctuations (where the hearing dims down just before ringing but there would be no ringing) and then rather frequent tinnitis too. I can trigger strange vibrations with my phone at work as well. It has slowly dimished over the last couple months. This is why my MSologist referred me. I am to have an audiogram before seeing him.

Lastly, is this the doctor that might order a BAER? If so, what are your experiences with a BAER?

[jensequitur]

Sounds like you're having tremors in your soft palate.  This can cause a fluttering sensation and pressure and hearing changes in your ears.  Typically it's referred to as palatal myoclonus.

Don't know anything about BAER, sorry!

[Sidesteps]

Dang Jens, you are one of my "go to" people. What's up with that?!?! lol ~

I knew I have had palatal myoclonus and I know I'm having tremor's. I never thought I'd find them in my hearing. How do they diagnose palatal myoclonus do you know?

[jensequitur]

I've never had my neuro tell me "that's palatal myoclonus."  Never really asked - although when I told her about it and the other problems I've been having with my legs, she prescribed keppra for me, which helps with myoclonus.  It definitely cut down on the tapping, which is good, because it was driving me crazy (crazier!)

But I know that the fluttering tap-tap-tap in your ear comes from the soft palate twitching.  I tested it out by tensing my soft palate several times very quickly, and it makes the same noise.  So it's actually not the hearing - it's the soft palate.

In fact, I had my hearing checked, and it's great - I hear better than most other people.  But I get these weird moments of silence, like somebody turned down the sound, and an odd feeling of fullness in my ears.

So check out this site, as this is where I get most of my info:

http://www.wemove.org/myo/

What I've found is that you can't Google your way into expertise - but you can certainly be a more informed patient.

[Sparkysarah]

Yes i first saw an ENT consultant as I had hearing loss and he investigated with usual hearing tests and then did MRI scan which showed demyelination on brain. I was then referred to neurologist for MS diagnostic tests and the rest is history. For me it was out of the blue and so unexpected as all I had was hearing problems. My hearing is now fine again!

Best wishes

Sarah

[essdipity]

I sometimes have a clicking sound in my left ear ,rather like tiny dice being shaken, or like a couple of grains of rice in a salt shaker. This happens only at night (or maybe the quiet makes me me aware of it then). This is a really minor issue for me, though, and I haven't pursued it .

My ENT, whom I see (rarely) for sinus problems, told me there are so many causes of tinnitus that it's virtually impossible to pin one down. This is the same doc I went to for a VNG test, though, which is more about dizziness than hearing. Yep, right on the money for me in terms of MS. My hearing is great,happy to say.

ess

[beachcomber13]

I'm newly diagnosed and don't know a darn thing about MS, but...

Maybe I can actually help someone here instead of people helping me. My profession is closely related to audiology, so I know a bit about it. :)

First a BAER, also called an ABR. Auditory brainstem response or brainstem auditory evoked response testing. It's totally painless, noninvasive. It's used for several reasons, most commonly to identify hearing loss in infants. They can't raise their little hands when they hear a sound, so the brain's response to sound is measured with an ABR. The readout looks like an EEG, with waves created by the inner ear and the brain in response to sound.

Hearing involves structures in the ear and the brain, which need to pass the sound along correctly so that you can understand what is said. If you are super nerdy like me, you might appreciate this diagram of the auditory pathway: http://www.ece.rice.edu/~dhj/pathway.html

If someone is having a problem hearing or processing sound, a BAER test can be used to narrow down where the problem is. There are waves on the "EEG" for a few of the structures in the auditory pathway. If the wave disappears at a certain point, you can guess where the problem might be (but you don't know anything about structures past that point).

When you go for your BAER test, they'll attach electrodes to your head. You'll probably lie down. They'll put headphones on you or put in little earbuds. You'll hear some clicks--not loud. All you will need to do is relax.

On to your symptoms... I share them!

I have had that fluttery feeling/sound in my ears. Off and on for at least eight years.

I've had intermittent tinnitus for the last year, more often recently. My tinnitus typically begins suddenly, without a ramp up. It does "ramp down," slowly disappearing rather than suddenly stopping. Occasionally it begins with almost a pop. Like a blown fuse. But it's never loud.

I've had a few brief hearing drops that return to normal, which happened for the first time six months ago.

Now that I've been diagnosed (less than a month ago), I wonder whether some or all of this is related to MS. I can see how it could be.

For me, the fluttery sound reminds me of the sound made when you shake an acetate sheet. Remember acetate? :) I would almost describe mine as a "warping" sound, although warping what, I don't know.

I have assumed that the fluttery sound was caused by spasms of a teeny little muscle in the middle ear called the tensor tympani. Its job is to protect your hearing if a loud noise happens--it makes your eardrum tense up so that the sounds are muffled a little before they hit your delicate inner ear at full strength. Although I understood that and could make a good guess as to what was causing the sound, I could not guess why on earth mine would spasm. MS could explain it--muscle tone and spasticity issues abound.

Hearing loss and tinnitus... Well, I emailed an audiologist friend about it last week, who said exactly what I thought he would say: Yup, could be the MS. I'll ask him about the fluttery sound when I see him on Wednesday. Here's what he said about the tinnitus:

as you are probably more aware of then I, with MS there's the issue with the mylin sheath on  your nerve which acts as insulation around the nerve keeping the impulses contained.  (I'm sure I am WAY oversimplifying it, please forgive me).  

With tinnitus, any impulses received to the brain by the auditory nerve that are outside of a normal stimulation pattern could be perceived as a ringing.  

[twopack]

Thanks for sharing a lot of interesting and helpful information BC.  Do you know if this test would indicate a diagnoses like peripheral or central vestibular neuritis?  I'm having a hard time remembering but I think at least some of the peripheral neuritis variety can be self limiting (go away with or without treatment).

You said something that got me thinking about possibilities.  You said,
"I have assumed that the fluttery sound was caused by spasms of a teeny little muscle in the middle ear called the tensor tympani. Its job is to protect your hearing if a loud noise happens--it makes your eardrum tense up so that the sounds are muffled a little before they hit your delicate inner ear at full strength."

I have become more and more sensitive to sudden loud noises.  (Like the phone ringing in a quiet house can make me strike out in anger and start crying at the same time.  It's not exactly painful.  It does feel intolerable.

I also find I'm increasingly sensitive to sound (and light) as time passes.  I remember my mother being told it is common for people to be sound sensitive before a hearing loss becomes apparent.  Maybe my waning warranty is showing.

I have my share of muscle spasms but guess I'm really just wondering what part that tiny muscle being too FLACCID might play in any of this.  I'd appreciate your ideas.  If this gets too involved I'll repeat this question in a new thread so we don't get derailed from what Sidestep is asking about.

Mary

[Sidesteps]

Oh very interesting... thank you for that information BC.

I know I have myoclonus, tremor's and twitching.... so I am fairly confident the fluttering is palatal myoclonus while it isn't exactly rhythmic it is more so than a spams of a muscle. I'm not sure that makes sense unless you have myoclonus.

The issue I have with my hearing when I'm on the phone is curious to me. I have to attend online webinars. I have to turn the volume way down in order when someone speaks on the phone for my inner ear to not "vibrate", like Mary said, it's not painful but it isn't tolerable. It's very odd but easily re-created.

I'll be super curious what he says ---

[beachcomber13]

Sidesteps, that vibrating thing is certainly curious. I want to think about that...

Mary, myoclonus is a MUCH better word than spasm for what I was trying to describe. Thank you. I guess I was thinking repeated brief spasms--right, myoclonus.

I wonder if repeated episodes of myoclonus might weaken the tensor tympani and make it less responsive when it needs to do its real job. Or flaccidity could cause it not to have the ability to protect you. Honestly, that muscle gets tired rather quickly. That's why you lose some hearing during loud concerts--the muscle can't keep working through the whole concert, so the sound hurts your inner ear.

Another thought. OK, the protection thing is called the acoustic reflex. It involves more than just that muscle. The sound goes in your ear and sends a signal up Nerve 8. The signal travels through the hearing areas of the brain. In one of the lower brain areas, before the sound gets to the part of the brain where you understand what it is, there's kind of a "trip wire." If the sound is above a certain loudness level, the wire gets tripped and a signal goes down Nerve 7 telling the tensor tympani muscle to do its thing. All of this happens in milliseconds.

But what if there's a glitch somewhere along the way? Could be a problem in the inner ear, Nerve 8, one of the brain areas, Nerve 7, or the little muscle. If the signal were simply delayed, the muscle wouldn't work in time to protect your ear, and the sound might be more piercing for you than for other people in the room.

There are ways to narrow down where the problem is, if an audiologist does acoustic reflex testing.

But aside from the acoustic reflex, I would also consider cochlear problems. There might be problems with the little nerves that help you hear variations in loudness.

If you already have hearing loss (which you could without realizing it... but you probably would know), I would also consider something called recruitment. And with the nuttiness of MS neurology, maybe it's worth considering even without hearing loss present. Here's an explanation of recruitment: http://www.hearinglosshelp.com/articles/recruitment.htm

Probably couldn't hurt to see an audiologist.