There is a need in the human psyche for certainty. It isn’t enough to simply prove that someone is suffering a particular set of symptoms, and to give that set of symptoms a name. The sufferers and the caregivers want to know what causes the symptoms. Why am I made to suffer this way?
There is no cause for Meniere’s by definition. Meniere’s is idiopathic endolymphatic hydrops, an inner ear fluid imbalance that has no known cause. That is what the name means. When you find a cause, those cases of endolymphatic hydrops are no longer idiopathic and so they cease to be known as Meniere’s and are known by another name even though the day before the cause was established those sufferers were lumped in with the rest of the Meniere’s sufferers.
AIED was Meniere’s. TMJ was Meniere’s. Semicircular Canal Dehiscence was Meniere’s. This list grows ever longer with each newly discovered cause. There will soon be a name for virally induced endolymphatic hydrops because we are clearly on the road to establishing that as a cause. There are other iterations of AIED that have not had a cause established yet and they’ll probably get lumped in as AIED-? When tests and treatments are developed after the causes are established. That is how this process we call science works.
In my years, decades now, of traveling the interwebs among my fellow sufferers, I have found people who have each and every cause that can be listed; from vascular to autoimmune to viral to trauma to metabolism to just insisting that Meniere’s is idiopathic, that there is no determinable cause at all. I have met each and every one of these people individually online. They all equally have Meniere’s. They have it because they have the symptoms in common with all their fellow sufferers. Singling out one cause for the disease and excluding all the others kicks those people who identify with all the other potential causes out of the family we either have established or can establish in the future.
In my estimation, even those people who never had idiopathic endolymphatic hydrops, because the cause of their symptoms is known, should still be considered a fellow sufferer so long as they have the same set of symptoms that I do, that most of us do. Ear pressure, tinnitus, hearing loss and rotational vertigo. If you have those symptoms then you are part of my family of sufferers and I’m here to support you in any way I can. While I need an explanation for my symptoms and will welcome the day the explanation is known, I’m not willing to throw any of my fellow sufferers overboard just to prove that my Meniere’s is the only Meniere’s that there is. Idiopathic may define Meniere’s scientifically, but suffering is universal and should be acknowledged wherever it is revealed. That is what it means to be humane.