Vestibular migraine - new terminology

Hi Gang,

To get ourselves aligned with the Committee for Classification of Vestibular Disorders of the Barany Society and the Migraine Classification Subcommittee of the International Headache Society (IHS) we’re going to drop the name migraine associated vertigo (MAV) from this forum and start using the now universally accepted term “vestibular migraine” or VM for short.

I’ll change this in all areas of the forum where I can. A new homepage is on the way soon too. We will always be mvertigo though. :slight_smile:

This forum will mainly support people with both chronic and non-chronic vestibular migraine but of course welcomes anyone with a vestibular issue going on, whatever that may be.

Best,

Scott and Adam

Hi Scott & Adam,
I agree - it is better if everyone in the world uses the same terminology! However, Vestibular Migraine will be quite confusing for us to explain to our family/friends, etc that most of us don’t, in fact, have anything wrong with our ears. The fact that our brain doesn’t communicate properly with our balance system (ears included) to me is more than a vestibular problem. Or maybe this is how we can describe it? Thanks for all the good work you are doing.
Barb

Crikey - my country neuro was ahead of the curve as VM was the diagnosis he gave me 3 years ago :lol:

Barb - maybe it’s helpful to explain it to people the way he explained it to me - that migraine is a neurological condition and can affect different parts of the brain for different people - hence the variety of symptoms. Our variant is called VM because it seems to particularly impact on the areas of the brain that work with the vestibular system (cerebellum, cortex) / and causes vestibular symptoms (dizziness. nausea) etc as well as other more “classic” migraine symptoms.

Ok so this is the 2 sentence simple version but it might help?

Thanks Lorcalon - that’s an excellent brief summary of our condition! I have seen the term ‘VM’ used quite often - I think the UK Migraine Society does.
Barb

— Begin quote from "lorcalon"

Crikey - my country neuro was ahead of the curve as VM was the diagnosis he gave me 3 years ago :lol:

Barb - maybe it’s helpful to explain it to people the way he explained it to me - that migraine is a neurological condition and can affect different parts of the brain for different people - hence the variety of symptoms. Our variant is called VM because it seems to particularly impact on the areas of the brain that work with the vestibular system (cerebellum, cortex) / and causes vestibular symptoms (dizziness. nausea) etc as well as other more “classic” migraine symptoms.

Ok so this is the 2 sentence simple version but it might help?

— End quote

Fully agree with this lorcalon.

Migraine is a neurological condition that can affect the brain in many ways but with us predominantly affects the vestibular system.

In my mind, a vestibular migraine would be an episodic type of migraine associated vertigo. An attack for instance that lasted a few hours to days.

I understand the naming needs to be in line with the various organisations but MAV seems to fit the chronic form much better.

Maybe it’s just a matter of getting used to it haha

I’ve always told people I have chronic vestibular migraine rather than MAV.

I found that a lot of people said ‘vertigo- what tall buildings have you been up then?’ and if you use the term ‘vestibular’ and someone googles vestibular, they know it’s the balance and ears that are effected.

Richy, if you put the word ‘chronic’ in front of vestibular migriane, are you happier? (Well, happier with the term!)

— Begin quote from "missmoss83"

I’ve always told people I have chronic vestibular migraine rather than MAV.

I found that a lot of people said ‘vertigo- what tall buildings have you been up then?’ and if you use the term ‘vestibular’ and someone googles vestibular, they know it’s the balance and ears that are effected.

Richy, if you put the word ‘chronic’ in front of vestibular migriane, are you happier? (Well, happier with the term!)

— End quote

much happier , thanks lol :smiley:

Barb asked that this be made a permanent fixture here for a little while.

I moved some of the other older stickies into the VM archive. 8)

Great change! One problem with the term “migraine-associated vertigo” is that “vertigo” is often defined (rightly or wrongly) as a sensation of the world spinning around you, which of course isn’t always what VM sufferers experience. “Vestibular migraine” seems much more accurate.

Nancy

Thank you!

Vestibular migraine has just always made so much more sense to me. And in describing the condition to others, I think it is a better way for non-sufferors to get the gist of how horrid this is to deal with.

My new doctor said, Vestibular Migraine? Sounds like hell!

Yep.

:slight_smile: K

My ENT consultant diagnosed me with vestibular migraine about 4 years ago but did not give me much information and as I had had simple classic migraine for 18 years prior to this which didnt really upset me much I could’nt understand why my symptoms where so debilitating and different to what I used to get.

I then found this website and MAV appeared to be so much more than VM at that time as it was described as much more of a chronic condition 24/7 rather than just an attack of migraine…

At the end of the day I think health orgainsations will always have to come up with a name whether its MAV or VM, but we as suffers know its so much more than that, from my point of view ‘it is’ a chonic debilitating condition which is still poorly understood by many doctors who still label you ‘just anxious’ but on the other hand I am glad that it is being recognised higher up the level as a condition in it’s own right and hopefully people will be diagnosed quicker and not have to spend years worrying whats wrong with them…

My ENT consultant diagnosed me with vestibular migraine about 4 years ago but did not give me much information and as I had had simple classic migraine for 18 years prior to this which didnt really upset me much I could’nt understand why my symptoms where so debilitating and different to what I used to get.

I then found this website and MAV appeared to be so much more than VM at that time as it was described as much more of a chronic condition 24/7 rather than just an attack of migraine…

At the end of the day I think health orgainsations will always have to come up with a name whether its MAV or VM, but we as suffers know its so much more than that, from my point of view ‘it is’ a chonic debilitating condition which is still poorly understood by many doctors who still label you ‘just anxious’ but on the other hand I am glad that it is being recognised higher up the level as a condition in it’s own right and hopefully people will be diagnosed quicker and not have to spend years worrying whats wrong with them…