The Vestibular Migraine Community

New member: What's wrong with me?


#21

The symptom list is identical to MAV.

“Symptoms typical of hydrops include pressure or fullness in the ears (aural fullness), tinnitus (ringing or other noise in the ears), hearing loss, dizziness, and imbalance.”

Diagnosis uses Ecog?

“Diagnosis is often clinical—based on the physician’s observa­tions and on the patient’s history, symptoms, and symptom pattern. The clinical diagnosis may be strengthened by the results of certain tests. For example, certain abnormalities in electrocochleography (which tests the response of the eighth cranial nerve to clicks or tones presented to the ear) or audiometry (which tests hearing function) may support a hydrops diagnosis. New research has shown that MRI with contrast in the inner ear can give a definitive diagnosis of endolymphatic hydrops, but likely would not be able to differentiate between primary (Meniere’s) and secondary. This is most commonly not used because clinical diagnosis is often accurate.”

Good going on the test front, that’s quite a list!!


#22

Have we just found the smoking gun, @turnitaround?

All of those tests I listed above were performed in March, 2016. At the visit where the doctor went over all of the results with us, we just remember him saying that all of my results were fine. He said that there’s nothing wrong with my vestibular system, so it’s probably vestibular migraine. And sent me on my way.

Click here for my normal test results
  • Audiological Analysis:  Excellent hearing
    
  • OAE (Evoked Otoacoustic Emissions):  normal
    
  • BAER (Brainstem Auditory Evoked Response):  normal
    
  • CDP (Computerized Dynamic Posturography):  normal
    
  • VEMP (Vestibular-Evoked Myogenic Potentials):  normal
    
  • V/ENG (Video/Electronystagmography):  normal
    
  • MRI of the brain, with and without contrast:  normal
    

BUT, last night when I was making that list of tests, I noticed the ECoG (Electrocochleography) results. And they weren’t quite “normal:”

ECoG Results:
Right ear SP was evident at normal negative values.
Left ear SP was evident at elevated negative values.
Right ear SP/AP ratio was 38% (SP = .13, AP = .33)
Left ear SP/AP ratio was 64% (SP = .17, AP = .26)

I looked up “SP/AP ratio” on Dr. Hain’s website and found this:

ECOG results are reported as an SP/AP ratio. A very conservative criterion for abnormality is a ratio of 0.5 or greater is considered abnormal. When attempting to diagnose Meniere’s, a criterion of 0.41 might be a better choice.

That quote is from his page on ECoG testing.

Now, there is a lot of discussion on his page about the limitations of the ECoG test, and it sounds like that test alone is not enough to determine someone’s diagnosis.

But, in my case, doesn’t it appear to show that there might be something going on, at least with my left ear?

Here are my actual ECoG test results:


Vng and ecog results and need input
#23

Bingo, maybe. The question is then, why? I feel a little unusual on this forum having a very definite trauma event. Clearly there are some things impacting the ear which are yet to be classified.

Btw, if you are seeing the legendary Dr Hain and can’t get to the bottom of things not much hope for many! I note he does not have a secondary hydrops page. I wonder why? There is definitely a condition where you can have hydrops but not menieres.


#24

Oh, no, I’ve never seen Dr. Hain. My most-recent tests were all done in Florida at the Silverstein Institute.

But I’ve been aware of Dr. Hain since probably 1999, when I think I first participated in some dizziness discussion groups (if you’re old enough, you’ll recall that back then they were email discussion groups). Back then he was recognized as one of the country’s experts, and some of the participants had traveled to see him.

He does have a page where he discusses patients who have Hydrops but do NOT have Meniere’s. He calls it “isolated hydrops:”

…However, not all persons with hydrops have Meniere’s disease, as this depends on meeting the committee’s criteria. Generally what is missing is hearing loss… There are persons who have hydrops (documented with the ECochG test), who do not meet the diagnostic criteria for Meniere’s disease. These people are simply diagnosed as having “hydrops”…

On that page he discusses his “hydrops diet.” I’ve done some of it (the low-salt thing) for almost the past 20 years but haven’t always been vigilant about it. I think I may try to follow his diet recommendation more closely for a while to see what happens.


#25

Just found more on Dr. Hain’s page about hydrops:

Comment: patients with hydrops do not fit the committee criteria for Meniere’s disease, generally because they omit hearing loss. The author of this page treats them as if they had Meniere’s disease (see algorithm). As MRI techniques improve for diagnosing hydrops, perhaps we will get confirmation that this is a real disorder.

So it sounds like he recognizes hydrops as a separate disorder, and uses his Meniere’s treatment plan for it…


#26

But if you read up about secondary hydrops it speaks about treating the underlying causative disorder first and foremost.


#27

If it’s “secondary,” then yes, there’s another underlying cause.

Maybe I’m reading too much into it, but perhaps Hain is suggesting that there is another, primary condition called “Hydrops” that is separate from Meniere’s.

AL


#28

Oh sure. I guess that could be possible.


#29

And, if there’s another condition that is just “Hydrops,” it still fits in nicely with your theory that, in many cases, “vestibular migraine” is really a type of hydrops…