Question about ECOG and caloric testing?

Hello,

This is my first time posting on this board. My dizzy journey began 15 years ago. My first diagnosis was MAV. I have bilateral hearing loss that is believed to be genetic due to the fact that it is a “cooke bite” shaped hearing loss pattern that was discovered on my first hearing test. I have bilateral tinnitus that was present from the onset of my first dizzy symptoms. Over the years I have been blessed with periods of remission, my most recent lasting 7 years.

My diagnosis was changed along the way to Meniere’s once I had elevated ECOG scores in the 60’s in both ears and a caloric test that revealed a weakness in one ear. The part that has always been confusing is that I have never had the typical MM symptoms. No room spinning vertigo, fluctuations in hearing or tinnitus. My symptoms were never episodic. Just the constant 24/7 dizziness. Patterns, grocery stores, certain types of lighting are just a few of the things that could really get the dizziness going strong.

Fast forward to March of this year. Had a bad cold that wrecked havoc on my ears. Pressure and fullness that has just started getting better in the last two weeks. I was blocked solid in one tube for weeks. Diagnosis was eustachian tube dysfunction, but not the fullness that can come with the whole MM package… Barometric pressure lows are rocking my world in a big way. Blurred vision starts long before the weather system hits our area, and the tinnitus really spikes as well. The lows can seems to affect the pressure in my ears as well.

The most difficult thing to try to overcome with this go round is terrible hyperacusis. The sound of water running out of a faucet is very difficult and dishes, silverware, etc. are very painful. Pain to the point of making me sick. I have never had hyperacusis before this.

Is it common or even possible to have positive ECOG and caloric testing with MAV? Is it normal to suffer from hyperacusis that is nearly disabling with MAV?

Having had both diagnosis on the table I want to make sure I am headed down the right path for treatment. I have even had steroid perfusions at the Shea clinic ( years ago) in Memphis in hopes of getting better. They didn’t help my symptoms much, but I did start to feel better over time.

When I am in remission I am symptoms free except for the tinnitus.

The only thing I can recall leading up to a few weeks prior to this was drinking a glass of red wine and feeling that “full” feeling in my ears. Didn’t think much about it at the time, but clearly that should have been a wake up call for me.

In the past 15 years I have never had any symptoms like this at all.

I would greatly appreciate any advice !!

Thank you!!

Hi,

I had 54% paresis after calorics in one ear and an ECOG showed over 60%. I only developed tinnitus years later and now thats continuous. They said I had endolymphatic hydrops from the results of the ECOG, but I was diagnosed with menieres before that, then more tests and diagnosis basilar migraine then vestibular migraine. I do get the room spinning vertigo, it usually lasts around 6 hrs where I cant move off the bed. It was red wine that gave me the first bad vertigo attack, but it was more than one glass :smiley: I had motion sickness as a child but also had 3 x perforated eardrums in childhood. I get proper full blown migraines, with the aura as well, I definitely know I am getting migraine.

Christine