How do you get a MAV diagnosis? It basically seems like a label to be put on neurological symptoms when no other diagnosis fits?
For me the neurotologist put it like this:
history of motion sickness + history of migraines + 24/7 dizziness + unremarkable MRI + unremarkable CAT scan = MAV.
Sometimes I worry that … well, it seems like if you go to, for example, a nephrologist, he’s going to say it’s your kidneys making you sick. But if you go to a chiropractor, he’ll say the cause of your problems is misaligned vertebrae. And a cardiologist will say it has something to do with your heart not beating right. The ENT will tell you it’s an inner ear problem. Know what I mean? All these doctors have their specialities & most of them don’t want to admit when they simply don’t know what’s wrong with you. So they do this hit & miss thing with different drugs that have helped other patients in the past & see if anything works. It all gets very frustrating when you’re the guinea pig.
Sometimes I think I’d be better off with no drugs at all … then I remember how I felt before the MAV diagnosis & various treatments. Vertigo 3-4 times a week … nauseous all the time … wondering how I was gonna be able to continue driving to work, let alone working at my job.
For me, I started with a desperate trip to my general practitioner to get some Meclizine to help me through serving Thanksgiving dinner last year. I ended up having to see a nurse practioner. Right away, she jumped on either Meniere’s or migraine. She sent me home with the Meclizine and Maxalt samples. The Maxalt did nothing for me, so I assumed it wasn’t migraine. The next trip was to my actual GP. She suspected meniere’s and sent me to an ENT. All the tests the ENT put me through came back normal. I ended up in urgent care after the ENG, which messed me up pretty badly, and the nurse practioner there sent me to a neurologist. He did a few more tests and when they came back normal he congratulated me for being otherwise healthy and most likely to live a long life, but he diagnosed the MAV. He is quite confident with the diagnosis at this point and so am I since all of the tests came back okay. Now we are just trying to find a way to better manage my symptoms, as is everyone else on this board. After hearing some of the other stories here, I feel quite fortunate to have found the neurologist I did. He is semi-retired and just happens to be working in my town on a temporary contract. That means I may lose him soon, but at least he was here to help me with the diagnosis.
— Begin quote from “joy”
Sometimes I think I’d be better off with no drugs at all … then I remember how I felt before the MAV diagnosis & various treatments. Vertigo 3-4 times a week … nauseous all the time … wondering how I was gonna be able to continue driving to work, let alone working at my job.
— End quote
I have this same thought sometimes, Joy. It is sometimes hard to distinguish the side effects from the actual symptoms. And, it is hard to know how much the meds are actually helping, or is it more the fact that I gave up my precious coffee and other foods.
Adam has posted a great article under the first link in the Articles section on the main page of the forum. It’s the eMedicine article. I’ve pasted a portion of it below but it helped me quite a bit to read the entire thing. This will help answer your question as to how MAV gets diagnosed:
*No diagnostic tests exist for migraine-associated vertigo. The diagnosis is made by clinical history or, when the history is unclear, by a therapeutic response to treatment. A definite diagnosis of migraine-associated vertigo can be made when patients have migraine with aura that is accompanied by concurrent episodes of vertigo or when they have migraine without aura that is repeatedly associated with vertigo immediately before or during the headache.
A probable diagnosis of migraine-associated vestibulopathy is suggested when patients experience recurrent or continuous vertigo or dizziness sensations without neurologic symptoms, when the dizziness is not time-locked to headache, when a past or family history of migraine headaches exists, and when the dizziness cannot be fully explained by other vestibular disorders. In these patients, a trial of migraine therapy can be started for both diagnostic and therapeutic purposes.
Proposed criteria for diagnosis of definite migrainous vertigo are as follows:
Episodic vestibular symptoms of at least moderate severity (rotational vertigo, other illusory self or object motion, positional vertigo, head motion intolerance, ie, sensation of imbalance or illusory self or object motion that is provoked by head motion)
Migraine according to the HIS criteria
At least one of the following migrainous symptoms during at least 2 vertiginous attacks: migrainous headache, photophobia, phonophobia, visual or other auras
Other causes ruled out by appropriate investigations
Proposed criteria for diagnosis of probable migrainous vertigo are as follows:
Episodic vestibular symptoms of at least moderate severity (rotational vertigo, other illusory self or object motion, positional vertigo, head motion intolerance)
At least one of the following: migraine according to the criteria of the IHS; migrainous symptoms during vertigo; migraine-specific precipitants of vertigo, eg, specific foods, sleep irregularities, hormonal changes; response to antimigraine drugs
Other causes ruled out by appropriate investigations*
Julie
I started with a diagnoses of Meniere’s desease. It wasn’t until the ENT I was seeing wanted to do surgery that I started talking to different doctors. They agreed with me that I may not have Meniere’s and sent me to the local university to see a specialist specialist. This doc told me that not only did I not have Meniere’s, I didn’t have any type of inner ear dysfunction that would show up in their extensive testing. Thanks to this doc, I still have use of my “bad” ear, and was sent to a nuerologist who told me that I “might” have MAV and the only way to tell for sure was to start treating my symptoms as if they were migraine related, and if things improved, then I had MAV, if not, then I would need to move on.
The ENT’s in my area love to diagnose any type of balance/dizzy problem that they can’t figure out as Meniere’s, and leave it at that, never questioning their own diagnoses. I had to question their diagnoses by going to a completely different city since all of the ENT’s in my city all work out of the same facility, and all follow the same course of prognoses. I knew getting a second opinion locally would just get me the same diagnoses, so it wasn’t easy for me to get an MAV diagnoses.