MAV needs a new name (follow up to KathyG's post)

So, I went to a get-together yesterday (first time in a crowd in a while…lasted about an hour) and saw some people who knew I have been having trouble the past 10 months. Told them I finally got a diagnosis. They asked 'what is it." Instead of saying Migraine Associated Vertigo and getting these either weird looks or having to explain it has nothing to do with what most people think of as migraines, I said “I have a neurological disorder that effects my balance. Right now I’m trying to find the right combination of medications and have started physical therapy.”

Wow…nice change. No weird looks, no stories about their headaches or spins from drinking too much. No looks like I’m crazy or depressed or psychotic. I now feel perfectly comfortable saying this, with no guilt (I guess I have had guilt thinking about people with MS and such…not anymore).

Anyway, what would be a good name for MAV that doesn’t get us tied into misperceptions by people?

How about NBD - Neurological Balance Disorder

DAT - Dizzy All the Time
IND - I’m Not Drunk
MWS - My World is Spinning

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The big problem is that people assume migraine = headache. Migraine is one of the most completely misunderstood disorders out there that actually affects a large number of people. Headaches are a SYMPTOM of migraine. They aren’t the disorder. But I would guess 95% (or even higher) of people think that the headaches are actually the disorder. Heck, until I had them I thought they were too.

Essentially I tell people that I have a variant of migraine that extends past headaches and affects my balance. But I’ll admit even some people in my own family don’t get it. Just the other day my dad asked me “how that eye problem was going”.

IND “I’m not drunk”

I need a button with that on it:)

Beachgal, I LOVE how you explained it to people. Very clever approach.

How about TRS? Can you guess? :lol:

I was going to suggest: FAAT=Feel Awful All the Time, but Scott, I like your idea better! TRS!!! :mrgreen:

TRS = This Really Sucks

How about WAN?

Ok, I give up. I figured out the TRS, but not sure about the WAN… (I might call it WANH=Want A New Head!, but I’m sure that’s not what you’re going for… :wink: )

Hell, I couldn’t figure out TRS (but love it!) Now, WAN…what is it Scott?!? What is it?

What a nightmare?

We Aren’t Normal? :slight_smile:

Dee gets the prize. ding, ding, ding :lol:

you guys crack me up… it’s nice to be able to laugh about it :lol:
I like all the new nicknames… I know I’m not going to use the word migraine anymore when someone asks.
As the World Turns :lol:

WAN…LOVE it. But who said we (okay, I) were normal before NBS/IND/TRS/FAAT/MAV :smiley:

— Begin quote from “beachgal”

So, I went to a get-together yesterday (first time in a crowd in a while…lasted about an hour) and saw some people who knew I have been having trouble the past 10 months. Told them I finally got a diagnosis. They asked 'what is it." Instead of saying Migraine Associated Vertigo and getting these either weird looks or having to explain it has nothing to do with what most people think of as migraines, I said “I have a neurological disorder that effects my balance. Right now I’m trying to find the right combination of medications and have started physical therapy.”

Wow…nice change. No weird looks, no stories about their headaches or spins from drinking too much. No looks like I’m crazy or depressed or psychotic. I now feel perfectly comfortable saying this, with no guilt (I guess I have had guilt thinking about people with MS and such…not anymore).

Anyway, what would be a good name for MAV that doesn’t get us tied into misperceptions by people?

How about NBD - Neurological Balance Disorder

DAT - Dizzy All the Time
IND - I’m Not Drunk
MWS - My World is Spinning

— End quote

I’ve often become really frustrated that people think I ‘just’ have migraine and don’t understand this… But you’ve just set a light bulb off above my head! Maybe we shouldn’t mention the ‘migraine’ word. I’m going to go with 'neurological disorder that affects my balance, vision and ears".

… and on bad days, TBS. :slight_smile:

TBS? Do tell :slight_smile:

First off, I want a button with IND!!!
I walk like a drunk no matter how good I feel!! LOL!!!

Second, I have said Vestibular Migraine, and that works if people are really listening to you and they hear the word ‘vestibular’. They ask some questions & you may actually end up communicating with them a bit about how much of your life is affected by this, without going into a whining session. But saying I have a neurological disorder that affects my balance seems to work much better. People either ask intelligent questions, or just shut the hell up. (That N word is really long…)

Either way I’m happy!

So where do I send away for my button?? :smiley:

TBS…

This Bullshit Sucks??

This bullshit stuff :slight_smile:

FTS - we all know what that means
VAMP - Vertigo and Migraine Paralysis
PMS - can now be referred to as Proper Migraine Spins
PMT - can now be referred to as Proper Migraine Trips
MAD - Mental and Dizzy or Migraine and Dizzy
C/UNIT - usually stands for Cents Per Unit but the word looks like it has a much more appealing use to describe MAV.

:smiley:

— Begin quote from “KathleenW”

First off, I want a button with IND!!!
I walk like a drunk no matter how good I feel!! LOL!!!

Second, I have said Vestibular Migraine, and that works if people are really listening to you and they hear the word ‘vestibular’. They ask some questions & you may actually end up communicating with them a bit about how much of your life is affected by this, without going into a whining session. But saying I have a neurological disorder that affects my balance seems to work much better. People either ask intelligent questions, or just shut the hell up. (That N word is really long…)

Either way I’m happy!

So where do I send away for my button?? :smiley:

— End quote

I tried to make you a button and post it on here, but alas I couldn’t upload a pic. I have to say though that it kinda looked funny, sorta like something someone who’s drunk would wear :smiley: