Verified by 
Ever since I first lost my hearing, 35 years ago, I’ve been frustrated by the fact that no one could figure out what caused it. As the hearing loss progressed to the point where I finally got a cochlear implant in the originally affected ear (the left) and a strong hearing aid for the right, I remained fixated on how such a major medical event could happen with no explanation. The term for that is “idiopathic.”
Webster’s defines the word idiopathic as “arising spontaneously or from an obscure or unknown cause.” It also means “peculiar to the individual.”
I hauled out Volume One of my “shorter” OED (two volumes, 4000 pages, three columns per page) looking for insight into the origin of the word. Not surprisingly, it comes from the terms “idio” and “pathic” – “of a disease.” The OED elaborates: “not consequent on or symptomatic of another disease,” and then the kicker: “no known cause.”
A disgnosis of idiopathic (for any kind of condition) puts a particular psychological stress on the individual. If you don't know the cause, you can't predict the prognosis. Will it get worse? Are there other symptoms that will emerge? Is it a symptom of an underlying condition? You can't know if it's genetic, and possibly hereditary. Will I pass it on to my children or grandchildren?
I've lived with this anxiety since I was 30, 35 years, as my hearing progressively declined. So imagine my surprise trecently when my longtime ENT casually dropped into a discussion of my hearing that the fluctuations I was experiencing were common with Meniere’s. “Wait,” I said, “Does that mean we are now diagnosing this as Meniere’s?” Believe me, I have begged for a diagnosis -- a name -- and never gotten a firm answer. "Meniere's" is not a firm diagnosis, but it's a name.
Meniere’s itself is idiopathic. In fact it’s also known as “idiopathic endolymphatic hydrops.” This mouthful refers to an imbalance in the fluids in the endolymphatic system, part of the cochlea. The symptoms include fluctuating hearing loss (most often unilateral), fullness in the ears, tinnitus, and dizziness or vertigo. I pointed out to my physician that I don’t have two of the symptoms (fullness or tinnitus, and I have bilateral hearing loss). My vertigo, which was intense, was also short lived: I had about 30 episodes over the course of a calendar year. Now it’s controlled by medication.
My doctor explained in what I am sure was very clear language why he was now using the term Meniere’s to describe the cause, but I wasn't following completely. I was distracted by my irrational pleasure at finally having a name I could put on my hearing loss.
So what if Meniere’s itself is idiopathic? (It’s also not treatable, and not even definitively diagnosable except during an autopsy.) I have a name for my condition! I can capitalize it. Capital “M” Meniere’s. It has a definition and known symptoms. After 35 years of “we don’t know” this seems like a step toward enlightenment.
The fluctuation that prompted this discussion was, for once, a good one.
In July I’d felt that I was hearing much worse than usual in my hearing aid ear. (The hearing in the cochlear implant ear changes only when the audiologist reprograms the implant.). I went to the audiologist and indeed I had lost about 20 decibels, going from being able to hear at 60 decibels down needing the sound turned up to 80 decibels. That put me in the category of a potential candidate for a second cochlear implant. But my ENT prescribed “watch and wait.”
So six weeks later, I went back. My hearing had returned to where it was before the July drop. Not that that level is anything to boast about: I still have moderately severe hearing loss and a moderately terrible ability to recognize words on a word recognition test. But no matter. My fluctuations in the past have almost always been permanently downward. “Up” isn’t something I can recall ever happening.
So maybe that’s another reason I was glad to have a name for my condition, one that starts with a capital letter.
