Why Arent we recognised by Migraine societies

Why is it that, " we migrane with vertigo Patients" are still not recognised by the medical institusions?

This Is all I could find on vertigo associated with migraine from the **"Headache and Brain foundation of Australia **
http://headacheaustralia.org.au/component/content/article/14-older-news/34-migraine-and-menieres-disease

No wonder we are left out in the cold!!! :twisted:
How can we make the Drs and neurologists aware of our condition if it isn’t even classified yet? This is the case in Australia.

God, that makes me cranky!
Look here, nothing about us, no criteria: http://headacheaustralia.org.au/headache-types

Jen

Sadly, I think too many docs look at MAV as a diagnosis of exclusion… that is, when they have ruled out all the “real” diagnoses they will slap MAV on you.
This is not right and I agree many docs need to be educated on this. I know many docs will also look at people with MAV as having a central dizziness problem and won’t even use the word MAV. In the US many docs don’t understand the various presentations of MAV and stick to the strict criteria which it seems few on this site fit into.

:frowning:

Hi Manvy yes I agree,
I think it’s time someone looked into this and tried to make something happen, there are so many good articles about mav and the symptomology, it is recognised as a “real” condition.
Unfortunately, someone isn’t listening to the neurologist and others in the know, let alone the patients like us.
An awareness campaign could just do the job, This is how the MDds’ers originally received funding, by doing the ground work necessary to make themselves recognised, and eventually a well known Dr who could then do research who got the funding.
I do understand the idea of "in the bin " type diagnosis, you know the "Too hard basket”, I felt that My original diagnosis of MDds was that, but as much as Mav’ers seem to be unusual/rare, I bet if you asked everyone on this forum if they know anyone with migraine with vertigo, most here would say yes.
My step sister’s husband had mav.

It bothers me, that they would ask me to do interviews for them on this subject, when they haven’t even classified our type of migraine. so frustrating don’t you think?
Maybe this is something well worth pursuing.

Multiple sclerosis has many types, Autism has many types, why should our difference in symptoms change having a name or classification?

Jen
best xx

I once came across this topic another site and the migraine expert there dismissed our condition because it is not recognized by the IHS. After over four years of this crap, two ENT’s, two Neurologists, three Headache specilaists and two vestibular therapists have never diagnosed me with MAV. The closest I have got is transformed migraine with unilateral vestibular loss on the left side. Even this site migraine.com/migraine-types/ doesnt’ even mention it. Very frustrating.

Steve

I’m on the bandwagon! We need banners and tee shirts and fund raising!! Let’s get the word out. FIrst, we need Janet Jackson to come forth as our spokesperson!!
:slight_smile:
Kelley

I have friends with Chronic Fatigue. Not so long ago, this was scoffed at. Today, when I went to give blood, a diagnosis of CFS was listed as ruling out donation.

Perhaps our condition needs a new name like some other diseases. The word “vertigo” doesn’t seem to fit this condition properly, and most people don’t understand or just roll their eyes when you use the word migraine. I vote to name this disease “Scott’s Syndrome”- a morbid form of migraine. :wink:

My Otoneurologist told me that MAV was being included in Edition 3 of The International Headache Society’s International
Classification of Headache Disorders (ICHD- 3).

I also read something about this on this forum but can’t find it.

— Begin quote from "dizzyizzy"

My Otoneurologist told me that MAV was being included in Edition 3 of The International Headache Society’s International
Classification of Headache Disorders (ICHD- 3).

— End quote

Great news. I know we all call it MAV but really doctors just need to realise that migraine quite commonly produces vertigo, dysequilibrium, derealisation and all sorts of other nasty cognitive problems. It is not solely a pain-based illness.

That is Great news, haing a clasification will make it easier for us to receive the correct medications for our condition , with NO MORE squables with GP’s. :smiley:

yes, and plenty of benzos for us! Without being looked at as “drug seekers” yay!

Kelley