Other diagnoses besides MAV?

How many of you in the past or present have received other diagnoses besides MAV? What were they? Did you just blow off the diagnosis and begin following the migraine diet/lifestyle, or did you go on to find second (or third or fourth) opinions where you received the diagnosis?

Just wondering what the road ahead might look like… :cry:

Hi Suki,

I was told labyrinthitis or VN to begin with (which I think is highly probable) and then that it was an anxiety disorder and uncompensated labs/ VN causing the endless dizziness (i.e. producing chronic subjective dizziness) and that’s where I decided to take matters into my own hands and work it out myself. It was through Hannah and Adam and relating my experience to theirs that I finally got the answer. Halmagyi did give me the MS freak out as well about 5 years ago but that blew over. :shock:

Is that the halmalgyi test? I didnt know that was related to ms. That was an abnormal test for me.

Hask – Dr Michael Halmagyi is a specialist at Royal Prince Alfred here in Sydney. He told me once that I could have MS but highly unlikely. S

I always wonder about ms. All of the specialists tell me its highly unlikely as well. I actually read about that dr.

I was told at first that I had BPPV and to just turn my head in the direction that made me dizzy and eventually the crystals would move. Well, after awhile I thought that was a load of crap so I sought out a neurotologist who dx MAV and then to the headache specialist neurologist he referred me to for management of it and confirmation of the MAV. I also saw my ortho to rule out cervicogenic dizziness because I have terrible neck and shoulder issues.

I was first diagnosed with BPPV by an ENT who didnt even touch me. He referred me to a VRT therapist to do the Epley maneuver, but I had no nystagmus. Then 1 year later I saw an ENT and Otologist and they believed I had either MAV of Perilymph Fistula.

Diagnosed at different times (incorrectly) with vestibular neuritis, labyrnthitis, BPPV, virus. Also investigated for MS and Meniere’s Disease. ETA - MdDS considered (in addition to migraine).

Most dizzy people aren’t fortunate enough to get a correct diagnosis right off the bat. In the past year, I have heard BPPV, cervicogenic, chronic subjective/anxiety/agoraphobia, and most recently mal de debarquement. Right now I just say “I have vertigo.” I stopped taking Remeron a few weeks ago because it made me super dizzy, not to mention other horrid side effects. I feel much better now. Other than being on Remeron, I notice I am always much less dizzy at home, but very wobbly feeling at work and in restaurants. I dunno what to think anymore. :frowning:

— Begin quote from “alternaace”

Most dizzy people aren’t fortunate enough to get a correct diagnosis right off the bat. In the past year, I have heard BPPV, cervicogenic, chronic subjective/anxiety/agoraphobia, and most recently mal de debarquement. Right now I just say “I have vertigo.” I stopped taking Remeron a few weeks ago because it made me super dizzy, not to mention other horrid side effects. I feel much better now. Other than being on Remeron, I notice I am always much less dizzy at home, but very wobbly feeling at work and in restaurants. I dunno what to think anymore. :frowning:

— End quote

I forgot about MdDS! That’s in the mix for me too.

Maybe we should just say “I’m possessed by aliens who are attacking my vestibular system and sending messages back to the mother ship via my brain”.

i have mav and was just also diagnosed with mdds. i wouldn’t wish this upon my worst enemy.

I didn’t really go through a lot of possible diagnoses. And I still have only a SELF-diagnosis of MAV.

A few things have been SUSPECTED but quickly ruled out.

Acoustic neuroma, ruled out August 1999 with MRI after sudden hearing loss. (Sudden hearing loss was eventually attributed to possible “stroke” in ear. As we know, migraineurs with aura are more susceptible to stroke, so it’s a good theory.)

Perilymph fistula, ruled out December 1999 by surgical exploration/patching. (Suspected because the hearing loss occurred when I sneezed hard.)

Vascular loop, which I do have–on the opposite side to my hearing loss–but probably not the cause of my dizziness.

I had a handful of BPPV episodes, but that was never suspected as the real cause. No symptoms suggestive of Meniere’s/hydrops or VN.

Some docs (including the dim-bulb neurologist I saw last year–last one EVER!!) attributed the dizziness to whatever inner-ear damage occurred when I sneezed in 1999. But I was dizzy for 16 years BEFORE that time (though at a level low enough that I never consulted a doctor about it, thinking it was “just me” being inattentive, fat, lazy, and having a not-so-great inner ear, as evidenced by motion sickness).

The best dizzy doctor I saw (in 2000-2001), an otoneurologist, first said MS, then said he didn’t know what was wrong; mentioned “could have been a virus” and finally left me with “medical student’s disease” (hypochondriasis), although I think he meant that with respect to my OTHER neuro symptoms.

I was “lucky” because the hearing loss made doctors take my dizziness seriously at first. I was never told my dizziness was due to anxiety, stress, depression, etc. (And I had no history of those.)

The rest of my neuro symptoms got little respect and were, over the years, attributed to “paying too much attention to the sensations in your body,” which was mostly nonsense. (You do not get electrical buzzing in your knee when you bend your head down because of “anxiety.”)

I asked the otoneurologist, the neuro-otologist, and other doctors down the line whether the dizziness could be from migraine, and they all brushed off the idea. Eventually I diagnosed myself with MAV. There’s just nothing else, and it makes sense to ME, given the timing and course of things. Even if no doctor of mine ever embraces the idea.

Nancy