After 3+ years of this, I might not have Meniere's after all?

So it's all sort of puzzling, but I am encouraged right now because ***fingers crossed*** we may have found some relief for me from the symptoms. I'll try to keep this brief.

My symptoms had a sudden onset in May 2011. Ear fullness, tinnitus, and several bad bouts of vertigo all in the first few weeks. I am married to an ENT who at the time was still in residency. He was sort of in denial that I could possibly have MM, he thought it must be labyrinthitis (sp?) or something similar. He got me in to see the head of the dept (this was at a top oto program) and along with all my symptoms and an audiogram that showed hearing loss in the low frequencies, the MM diagnosis seemed the most likely (MRI ruled out other stuff, etc etc). Two years later we moved to Boston for a year, where I saw Dr Rausch and he concurred with the original diagnosis. There was really no reason to think otherwise.

Meanwhile my symptoms, which initially fluctuated, became more and more frequent. During our year in MA, the tinnitus went from intermittent to constant. Also my balance took a big hit and I began having lots of dizzy (not full vertigo) episodes. During that time I'd also had a baby at the beginning of the move, and while things got a bit better during pregnancy, it all went downhill after delivering.

After the year in Boston, we moved a final time to where my husband has started a practice with several others. I have been seeing a new (to me) neuro-otologist here who has been puzzled by my case. He trained eons ago at the same residency program where my husband did, so he wasn't doubting the reliability of the diagnosis, but what he didn't understand was why my current audiograms show no real loss at all. It's like the low-tone loss was temporary, I am guessing lasted for the initial year, and then I regained what I lost. Meanwhile, the ear fullness episodes were becoming more frequent, lasting longer, and generally just getting worse. The tinnitus is still constant but has stabilized. The balance issues have gotten waaay worse. I had some return of vertigo too in the past 6 months, though it was different in nature than the original episodes.

Also during this year, he had me have blood draws and my kidneys were in distress, presumably from the diuretics I'd been on for 3 years so I had to stop those.

I've been seeing him every 6 weeks or so and he watched my symptoms complaints get worse and my hearing stay stable. He kept saying that if this was truly MM, the audiograms should be showing something by now, 3+ years in. He felt that my symptoms were more in line with vestibular migraine (which I believe is the same as MAV). I was doubtful because with the ear fullness being so extreme, from what I'd read about MAV it didn't seem as likely. I also have no headache history. But I was willing to try anything. (Incidentally, a few months earlier he gave me an intertympanic injection of steroids which did nothing). He put me on 10mg nortriptyline (sp?) at bedtime to be increased gradually to 30mg, also recommended I start the migraine diet to check for food triggers, and finally to start a Mg supplement. I tried the diet for a month and couldn't pinpoint triggers. 10mg and then 20mg did not do much for me, but I started to consistently feel somewhat better at 30mg. Nowhere near 100% but the fullness hasn't been quite as severe and is slightly less frequent. At my latest appt, he was encouraged by my progress (which I estimated at 20% better... the first time I wasn't worse since my previous appt). He has kept me at 30mg and added a prescription for 80mg Verapimil (sp?). I am still on the lo-so diet "just in case" for now -- there's always the chance I have both MM and MAV.

In his opinion, the way things are looking, I may have MAV instead of MM -- he also seemed to try to sell me on this being a better diagnosis, in that it's more easily treatable, and "attacks" don't leave permanent damage to hearing/balance as MM does. Time will tell, I guess. He's also explained that some people think MM and MAV are one and the same thing, with different symptoms being more prominent for different people. He said others in the field think MM and MAV are two sides of the same coin (whatever that might mean). He though thinks they are two distinct ailments, although some people can have both.

So since adding the new Rx, I am feeling a LOT better, but am cautiously optimistic that this could be one of those random MM remissions (that being said, I haven't had this kind of relief, for this long a period, since the first few months of illness). I am still not 100%, but most days I feel at least 80% and there's even been a few days, or parts of days, where (ignoring the tinnitus) I am pretty darn close to 100. Most days, I start to go slightly downhill in late afternoon, and at my last appt he said if that happens, we'd discuss either upping the dose of Rx#2 and/or starting to take it in the morning rather than at night. I do run really low blood pressure naturally, so we have to be careful with that one.

Just wanted to share my story, so far, here on this forum in case anyone sees themselves in a similar situation with symptoms and hasn't considered MAV yet.