Haya, you me both, to some extent.
I’ve done a lot of research since I became ill and have concluded that the science of vestibular medicine has a long way to go and there are a lot of unknowns and a lot of controversy.
Part of the problem is the anatomy - the inner ear is tiny, hugely complex and sits deep in bone. It’s very hard to image. This is in stark contrast to your eyes which are much more exposed and very easy to view in detail for example. Even measuring the pressure in your eye is sooo much easier!
Vestibular neuritis is an unsafe diagnosis and may not involve viruses. Instead up-to-date doctors refer to that condition as “acute peripheral vestibulopathy” (ie of unknown aetiology). It is also acute and not chronic, so if you are experiencing symptoms over many months it’s not going to be a virus. Viruses don’t remain continuously active for that long!
Some people are satisfied with this being called a ‘migraine’.
I am far from being satisfied with that (its far more complex than that I suspect and this diagnosis does not explain why you have a migraine, so it’s rather shallow!), but believing that does at least allow you to move on and work on what makes you feel better, rather than focusing on what is wrong with you.
I personally did not have a history of migraines and yet my first consultant diagnosed me with “MAV”. Knowing that my particular issue was brought on with an injury I immediately smelt a fish and my subsequent research has lead me to question the entire discipline.
Unfortunately with a chronic audio-vestibular condition there are a lot of unknowns and part of the fight is coming to terms with the things we don’t know.
Even if you get a diagnosis from one doctor, another may disagree. Who to believe? I saw 4 doctors and some of them gave me multiple alternatives, none of them agreed exactly. I understand why completely. Yet these were all top consultants. My current one has the chair at a major university. I’ve concluded that “a final diagnosis” is simply the one you believe in!
If you want my frank opinion I very much doubt a significant degree of these conditions involve ‘nerve damage’. That is a terrible unsubstantiated statement to make. We do not have the technology to determine that in a live human being. The alteration and/or instability in response in both your audio and vestibular senses could be for a whole different reason.
However, we do know that the MAV protocol is effective at improving most people’s condition so I urge you to focus on that.
It is normal to have to give up Amitriptyline for testing, get back on it if it made you feel better.
Good luck with your search.