Back at the dawn of my personal Meniere’s experiences, I had been having what I saw as seasonal afflictions of tinnitus and ear pressure that I treated with Sudafed Non-Drying Sinus, an over the counter allergy medication. When the vertigo started to present itself along with the tinnitus and the ear pressure, which is also when I started to notice permanent changes in my hearing, I had no treatment options that I could fall back on because the nausea and the vertigo of spinning was something that I had merely endured as a child. That kind of vertigo was something that you braced yourself to endure until it passed; which was generally less than an hour’s time, sometimes even less than a minute. I had never experienced an extended bout of vertigo like the ones that started to take over my life back in 2001-3 when my life took a left-turn into the land of near-permanent spinning.
The first time that I spent the night on the bathroom floor suffering from vertigo; spinning, vomiting and then unconscious (the first time that wasn’t related to drinking far too many shots of liquor) I made an appointment with an otolaryngologist (ENT) and asked open questions about what these seemingly-related symptoms meant rather than assuming that they were just allergies or some other thing that I could easily treat with over the counter medication.
The second ENT gave me my first caloric stimulation test, warm and cold water in the ears. Light bars on the wall that I was supposed to track. They couldn’t tell me what was wrong with me, but even this inconclusive attempt at an assessment was better than the first ENT that I saw. That guy told me I was mental and needed a psychiatrist. That might have been a true observation at the time, but I wasn’t there for advice on my mental makeup. I was there to stop the vertigo and nothing more or less than that.
The third ENT gave me my first thorough battery of tests (thank you Dr. Thompson) Electronystagmography (ENG) and caloric stimulation, this time with hot and cold air. I have had audiograms run on my hearing for most of my life because of my frequent childhood ear and sinus infections. This was the first time that they showed me the results for one. There was a noticeable drop in the hearing in the left ear. That ENT first said the word Meniere’s to me.
Several of the ENTs I saw over the time I spent trying to figure out where the vertigo came from performed various versions of videonystagmography (VNG) and head-impulse tests (HIT) although they never explained what it was they were looking for until long after I had the Meniere’s diagnosis and I started asking tougher questions of everyone around me.
I’ve had several CAT scans over the years, the most recent one was run specifically to rule out superior semicircular canal dehiscence (missing or abnormally thin bone structure over the inner ear canals) I’ve also had several MRIs or magnetic resonance imaging tests run over the years. The brain looks good. The problem is in the ears.
I’m seeing a new ENT these days and they’ve decided that some essential tests were missed in my original diagnosis. I don’t know why they are questioning the diagnosis now but I’m not hostile to finding an alternative explanation and treatment for my symptoms, either.
The test that they currently want to run is an Electrocochleography (ECOG/ECOCHG) I’ve never had an ECOCHG before and was confused when the subject first came up in the Meniere’s subreddit because they kept calling it an ECoG, which is a widely-known experimental procedure involving placing electrodes directly on the brain. I couldn’t imagine how it could be a common test conducted on patients suffering acute vertigo. As it turns out I was right, but for the wrong reason. Par for the course.
Once that confusion was cleared up on my part I was curious to know what that test was like and what it might show for me. I was curious enough to initially agree to undergo the test when it was suggested. However, I’m beginning to have second thoughts on the subject.
I don’t think that much can be revealed from an ECOCHG now aside from ruling out a Meniere’s diagnosis, something that will not get me any closer to the kinds of answer that I as a sufferer will find helpful. I don’t really care what you call this collective group of symptoms, what I want to find is a cause and through that discovery find a more useful treatment.
From the very beginning of my symptoms I have been convinced that there is an autoimmune-caused quotient of the overall problem. While I have had several blood tests to rule out autoimmune inner ear disease (AIED) and other commonly known autoimmune issues that can cause the symptoms I have, none of them have come up as positive and so none of them have produced results that I found useful.
I remain convinced that there is an autoimmune-related cause for my symptoms in spite of there being no evidence to back up this belief of mine. Betahistine and guaifenesin added to the treatments that I already undergo for hypertension seem to be the most useful medications at preventing ear pressure and vertigo. I can’t get past these facts. An allergy treatment and the most common Meniere’s treatment in the world are the two drugs that produce the best results for me aside from just basic rest and exercise. This has to mean something.