POLL: Site title: "The Vestibular Migraine Community", does it need a tweak?

Guys I’m wondering if the site needs a slight change of title.

According to Dr. Hain, Vestibular Migraine is a subset of Migraine Associated Vertigo. Most of the board members on here relate to having MAV much more commonly than “Vestibular Migraine”. People write ‘MAV’ on many more posts.

“The Vestibular Migraine Community” is definitely more succinct, but may be technically slightly incorrect, therefore. I’m wondering if we should be titled “The Migraine Associated Vertigo Community”, which would better represent the scope (which includes Vestibular Migraine).

There is also the issue that we have a few Secondary Hydrops sufferers on here, and neither title reflects that, though perhaps we can work around that. Ideas?

Now it’s not all about being ‘technically correct’ of course, we just need a title that attracts sufferers to the site, one that instantly ‘makes sense’ to them and let’s them know that there might be community on here that can help them.

Let’s see what you think, please feel free to explain your point of view in a reply, but here’s a Poll.

  • Let’s keep the title “The Vestibular Migraine Community”
  • Let’s update it to “The Migraine Associated Vertigo Community”
  • Neither of those, we need to have a title that also encompasses our Hydrops sufferers (see my reply below)
  • I’ve got a different idea for a title (see my reply below)

0 voters

NB I’m not proposing a change of URL at all, that’s too core to the ‘brand’, no change from mvertigo.

Reference: Migraine associated vertigo -- Vestibular Migraine

I really don’t mind what it’s called - but if you want to attract new members…perhaps something that highlights the ‘Vertigo’ symptom - which seems to be the most common symptom to all current users - irrespective of their ‘diagnosis’?? Just my tuppence worth!! Some people have been given a ‘diagnosis’ and may not look beyond that???

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What’s the difference between MAV and vestibular migraine? I always thought they were the same. I tend to use “mav” when on forums such as this since it is much easier to write but when talking to a doctor I’ll use the the term vestibular migraine, I think it seems a more professional term, also I don’t use “mav” when talking to a doctor because I don’t know if it’s pronounced m-a-v, as in 3 separate letters or mav, as in one word rhyming with have. Personally I don’t like “vm” reminds me to much a a short cut for vomit (sorry).

According to Hain they are subtly different. Vestibular Migraine is a subset of Migraine Associated Vertigo. Link above in OP.

I was told I had vestibular migraine so would not have found this site if it had been called something else. I had no idea what MAV was at first! I do understand that the title needs to cover all things related to our concoction of symptoms but personally am happy with it as it is as I am very glad I found it.

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I just re-read Hain’s page (linked in the original post) and it sounds mostly like he just disagrees with the term that the IHS (International Headache Society) has chosen to use, which is “vestibular migraine:”

I suspect that most doctors out there are using the term “vestibular migraine.” I would bet money that if I called my doctor and asked him, “Do I have vestibular migraine or do I have migraine-associated vertigo?” that his answer would be, “They’re the same thing.”

Also, note that the companion Facebook page for this site, which was also started by the founders here (Scott and Adam), is titled “Vestibular Migraine Professional.”

I think we need to keep the term “Vestibular Migraine.” If you feel strongly that the word “vertigo” needs to be in the title, then maybe one of these:

  • The Vestibular Migraine (with Vertigo) Community
  • The Vestibular Migraine and Vertigo Community

P.S. It seems like a lot of doctors use interchangeable terms for essentially the same thing. In the past I was told I had “Vestibular Neuronitis” but that also seems to be called “Vestibular Neuritis.” And even the term for our specialists seems to be interchangeable between “neuro-otologist” and “neurotoligist.” These variations drive me crazy but I’m an engineer and like precise terms, whereas the medical community is still debating whether theirs is a science or an art and publishing papers about the debate!

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I like this idea.

Incidentally, 40% of those who responded to my poll on hearing loss say they have persistent hearing loss at high frequencies:

https://www.mvertigo.org/t/poll-do-you-have-any-hearing-loss/14520?u=turnitaround

Having hearing loss seems to put you into the Menieres bucket if you follow the criteria strictly … but CLEARLY this thing is so very different from Menieres, because:

  1. The symptoms are much more constant for most sufferers
  2. The hearing loss is untypically high frequencies only, which is very un-Meniere’s like too

Oh FFS!! That makes me mad!!!

I know… Apparently it’s possible to get anything published!

:+1:

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