My Story - Rice Krispies (Snap, Crackle, Pop)

[jispop]

Hi y'all,

I am new to this site. So here is my story in the hopes that I will get helpful feedback from those with similar experiences.

In September I began to have episodes of popping (thumping) sounds in my left ear. The episodes last for many hours and are impossible to sleep through. They are often triggered by burping that jars the head and always, always by even the smallest repressed yawn. Or if sufficient time has passed since the last episode (a few days), the popping begins spontaneously. The episodes usually last longer if more time has elapsed since the previous episode. I am unable to stop the episodes and Skelaxin, Dilantin and Clonzepam have provided no relief. I was tested for Palatal Myoclonous but no palatal jerks were seen so I figured I must have myoclonous of the the middle ear muscles, the Eustachean Tube or both. A tympanometer test revealed nothing. MRIs and MRAs have been negative. I am going to another ENT next week, so I will ask him what tests can be done to localize the sources of the popping noises (anyone know any top notch ENT in the L.A. - O.C. area?). I do hear my own arterial flow (pulsatile tinnitus) and I have begun treatment for myofacial pain disorder (I have been wearing a M.O.R.A. for three weeks and have been seeing an osteopath for a month). My facial pain has reduced slightly but the myoclonous continues unabated and has become increasingly easy to trigger. Several times I have hiccuped during the night and had an episode start and a night of sleep lost. (Is the hiccuping also myoclonous ?). Also, I have begun hearing occasional faint clicks in my right ear, but its mostly when I am lying down and having an episode of myofacial pain.

That's it ... thanks for reading and thanks in advance for any feedback/help/sympathy, etc. that you can provide.

Jon

[EarXPlode]

I have learned that for the most part, even if you have palatal, you will never see the palate move (unfortunately).

J., it sounds like you may have TMJ? Is this correct? I am trying to put together a theory which I found may have some truth to it. It is this: (this part is fact), myoclonus itself is not a disease, rather the result of something else manifesting itself as muscle spasms, but what is the underlying cause. An article (http://www.drjimboyd.com/book/7th_sth.htm) says:

The are two other muscles associtated with jaw function (that is, muscles innervated by the mandibular division of the trigeminal nerve) call the tensor tympani (it attaches to the ear drum, and stabilizes it from the excess vibration caused by loud sounds) and the tensor levi palatini (it attaches to the eustacian tube, and helps to open and close the tube, thereby equilizing pressure withing the inner ear...it is what "unplugs" your ears as you chew gum in an airplane). Over activity of these muscle can sometimes cause a ringing sensation, called tinnitus. It is not unusual for the patient with CCS to complain of ringing in their ears, or vertigo. The tensor tympani and tensor levi palatini are tensed when ever the jaw-closing muscles are tensed, i.e., when ever the jaw is clenched. Although at first they might seem unrelated, you can now see how chronic jaw-clenchers ofter times complain of tinnitus.

I believe that TMJ causes more than just tinnitus. I believe it may be responsible for some of our problems.

Any comments, theories?

Joe

[jispop]

I have been diagnosed with myofacial pain and I have been wearing a MORA (jaw realigning appliance) for the past couple months. All of my symptoms began in close proximity to one another, which tends to make me think they must be related, however, I haven't been able to find a doctor with enough general knowledge to confirm that possibility (they are all to specialized in their own areas).

The part about not really being able to diagnose palatal is discouraging because that means having surgery to cut my tensor tympani and stapedial muscles will likely not have the desired effect of eliminating the popping episodes.

What course of action do you think I should take? Also, have you ever heard of someone having popping noises that are triggered by yawning?

Jon

[EarXPlode]

Yes, Lib (who is on this board, and you can also find her on the hyperacusis.net boards) has your symptoms. I don't have the palatal.

I have been discussing with her the possibility that the two are connected but she says all of her docs dismiss it right away. But that article really makes me think. And besides that, how many ENTs did you have to go to before one knew anything about (or believed you) stapedial myoclonus? I bet quite a few. So, even though docs may feel they aren't connected doesn't mean they're right in my mind. I think a lot of them are too close-minded (or at the least, too cautious).

From what I understand, it is very difficult to diagnose palatal, as it is difficult to ever see the palate move.

Like you said in your original post, tests revealed nothing. That unfortunately is the case. Tests show everything as fine. MRIs, CTs, stapedial reflux test, e-tube tests, they all show normal functioning ears, muscles, etc.

I too have the popping (I describe as thumping) in my ear from yawning, burping, etc.

As far as a course of action goes; ask you ent/neuro/otologist to take a microscope and view you eardrum. Find a noise that will undoubtedly case the popping. If they can see they ear drum move (this may be a while, and hard to do, but after a few minutes, the doc should see the ear drum dimple at least once). In that case, one of your two ear muscles is spasming.

But if they don’t see it, (don’t discount it), but it may be another muscle.

They are going to try botox on me today through the soft palate for my tt. (they say the muscle runs all the way down to the top of the mouth and innervates up to the tendon in the ear and if I stop spasming, they will know that it is the tt, if not it is the stap. But another doc says that both are usually involved.

I will post to let you know when I know more.

Joe

[jispop]

Joe,

I have been talking with Lib via email.

The current ENT I am seeing looked in my ear with a microscope while the ear was popping and saw nothing.
He twice sent me to the USC doctor who used an endoscope and both times saw no palatal movement while my ear was popping, so he suggested (as did the doctors at the House Clinic, who gave me a tympanometer test which showed nothing) that I consider surgery to cut both the tt and stapedial muscles. Now, after hearing what you and Lib have to say, I wonder if that is the wrong option and that in my case it is likely neither the tt or stapedial muscle that is causing the popping, but the e-tube muscle that is causing the popping? Should I be considering the botox (but what would the dr. inject botox into)?

I am seeing a Dr. Schames in L.A. next week. He is a TMJ doctor. My myofacial pain began two months after the ear popping started, so maybe he'll see a connect and have good advice and a possible less invasive and more reliable strategy (than just cut 'em and hope).

I have never had a problem with a dr. believing me regarding this (maybe because I seem so unhappy about it).

How long have you had your symptoms? How long does an "episode" of popping last for you? Isn't is torturous trying to stifle yawns and burps, and panicking when you can't avoid doing either? Last night I did a little hiccup while I was asleep (at 2 a.m.) and the popping didn't stop until 8 a.m. What a life!

Jon

[EarXPlode]

Jon,

Yes, unfortunately this is all so hard to diagnose. It does sound like it may be more of your e-tubes. But on the other side of the coin (playing devil's advocate here) is that it is very hard to see the ear drum move. It took my neuro about 2 minutes of my ear thumping in his office (using a microscope) to see it move once. But my ear was moving the whole time. All I am saying is that it may not be your problem, but don't totally discount it. Lib may have some ideas too.

Well, I didn't get the botox. It is a long story I will share later. But I don't think you can botox anything but the palate.

My docs right now are using their equipment to try and objectively measure my problem but this is totally new and uncharted scientific area.

I have to go now, but I will post more later.

Joe

jispop said:

Joe,

I have been talking with Lib via email.

The current ENT I am seeing looked in my ear with a microscope while the ear was popping and saw nothing.
He twice sent me to the USC doctor who used an endoscope and both times saw no palatal movement while my ear was popping, so he suggested (as did the doctors at the House Clinic, who gave me a tympanometer test which showed nothing) that I consider surgery to cut both the tt and stapedial muscles. Now, after hearing what you and Lib have to say, I wonder if that is the wrong option and that in my case it is likely neither the tt or stapedial muscle that is causing the popping, but the e-tube muscle that is causing the popping? Should I be considering the botox (but what would the dr. inject botox into)?

I am seeing a Dr. Schames in L.A. next week. He is a TMJ doctor. My myofacial pain began two months after the ear popping started, so maybe he'll see a connect and have good advice and a possible less invasive and more reliable strategy (than just cut 'em and hope).

I have never had a problem with a dr. believing me regarding this (maybe because I seem so unhappy about it).

How long have you had your symptoms? How long does an "episode" of popping last for you? Isn't is torturous trying to stifle yawns and burps, and panicking when you can't avoid doing either? Last night I did a little hiccup while I was asleep (at 2 a.m.) and the popping didn't stop until 8 a.m. What a life!

Jon

[jispop]

Have you ever known someone who did have botox injection for palatal myoclonus? What muscles did it immobilize? Did it work? If so, for how long, what did it cost and what are the side-effects ?

Thanks,

Jon

[EarXPlode7]

Jon,

Yes, in fact I know (of) a person who they did it to. My docs did it to this 15 year kid. They took a video of it and it was amazing. You could see his palate jerking like crazy. There was a quarter-sized spot on the top of his mouth that was jumping up and down and making a clicking sound so loud. They botoxed right into that spot and it immediately stopped the spasms, the noise, everything. It was gone. But they must have underdosed him because it only lasted 48 hours. They were going to botox me, but they are still learning about all of this and they may have thought that I had palatal, which I do not. My problem is specifically the tt or sm. You can't botox the stapedial because it is the size of a hair and to do the tt would mean they would have to go through my nose.

But they did tell me that every person has a different amount of effect time (how long it lasts). For some they said it could be up to a year, for others, just weeks and there is no way of knowing really for each person. And all of the docs I have talked to say that botox has very little if any side effects. The only side effect is the one it makes on your wallet. It isn't covered by insurance, even for medical reasons, and a bottle costs 4,000. And because you don't use all of it, most of it goes to waste, because it breaks down in the bottle in like 2-3 weeks. I think the muscle it stops is the tensor vali palatini.

Have your docs tried anything new on you? Have they come any closer to figuring out what is going on?

Joe

[jispop]

Joe,

The only tests the doctors did on me while the symptoms were occurring were 1) tympanogram, 2) viewing palate with endoscope (twice) 3) looking at ear with microscope and in all cases, they saw nothing (my popping is very intermittent). There are no plans to do anything else, except to cut the middle ear muscles next month. The more I talk with you and Lib about this, it seems the surgery is very likely to not remedy my problem.

I was wondering whether I should ask my ENT to inject my palate with botox just to see if the palate was the source of the problem, but you answered my question for me. At $4000 a pop, that is not an option for me. I have already tried skelaxin, dilantin and clonzepam without improvement.

My questions for you:

1) If you know your popping is due to the middle ear muscles how come you don't have them cut?

2) How do you know for sure it is the middle ear muscles and not the palate that is causing your popping (or all of them together) ?

3) What other tests besides the ones I've listed have you had done or you know I could have done?

4) How long have you had your symptoms and do you know what caused their onset? Have they only gotten worse over time?

5) What is the pattern of your popping episodes? For me they are set off and go on for 6 to 10 hours no matter what I do. They start off with a high frequency of pops, then taper off, then return to a high frequency of pops at the end.

Sorry for having so many questions.

Thanks,

Jon

If you would like to email me directly, I am at [e-mail].