The Vestibular Migraine Community
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MAV Meetings


#1

Hi everybody.

i’m interested to know whether anybody actually knows anybody else with this condition and meets up (aside from on this forum)?

Of course, when it’s at its worst and you’re going through an acute phase, travelling is the last thing anybody wants to do.

I have a friend who may have this condition, but she lives 300 miles away, so we don’t get to compare notes very much, except by phone.

so - just wondering if you know of any meetings, or if anybody would like to meet to compare notes, sympathise, etc. it can be quite a frustrating condition because nobody else really understands what you are going through and they just raise their eyebrows when you try to explain the symptoms…

I’m not far from London (actually in Tunbridge Wells, where Dr Surenthiran has one of his clinics), and would be willing to meet or organise a meet-up if anybody is interested.

let me know!


#2

That sounds like a very good idea. I am in Suffolk and haven’t met anyone else with VM yet. I think there was a questionnaire a while back about where people live but that may have been on the Facebook forum. I don’t recall anyone being near me then though. As you are not too far from London you may have better luck.


#3

I love the idea of a meet-up. It sounds like a lot of us are pretty spread out though. I’m in the states.


#4

It’d be cool to have an interactive map to state where we all are. You could put a pin where you are on the world map.

@turnitaround
James, is this something that could be introduced ?

Granted some people wouldn’t have to or want to due to privacy concerns.


#5

Open to meet up. I am in California.


#6

Yes it would. I don’t believe the feature has been developed in Discourse, or as a plug-in yet. I’m digging … but can’t promise anything


#7

OK, it seems we can add custom text fields which would at least allow us to capture, voluntarily the location of the user.

We could have the following two custom text fields:

  1. Nearest City
  2. Country

These would then appear on the public profile and the users pop-up card.

This is fairly straightforward and easy to configure.

Later we might be able to use that data to display on a map …

Of course the perfect solution would be to have a map on which a user could ‘pin’ their location, so that would be only one record and then we could obviously have a map with everyones avatar in their respective locations … but that’s a lot of development …


#8

I think the custom text fields would be great. In the US it would be better to have (1) nearest city, (2) state, and (3) country but I realize that’s not how the rest of the world works. :slight_smile:

And I assume they’d be optional fields so for those who are concerned about privacy, they could leave them blank.


#9

Yes we need a solution that works globally


#10

I have never used Skype, but I suppose that’s a possibility for a group meetup.


#11

Aha, yes, a big group Skype hello, haha …

btw, When I said “a solution that works globally” I meant the changes to the site to capture and display location :slight_smile:


#12

Ahh, yes, I know. I was going off on a tangent. :slight_smile:


#13

Hi James,

Can we have a med profile for every user. Where they can enter name of one or two meds. That way we don’t need to keep asking what meds are you on. This can show up when we click on the username along with real name and badges earned.

I think the med profile will be more useful than the actual location where everyone is situated.


#14

That’s not a bad idea Vignesh. Yes I can add two free text fields I believe.


#15

Done. Go to User Preferences -> Profile. You can see the change on my user card already. There is also a free text Location field.


#16

You are the best, James. I see your meds and i populated mine as well. !


#17

Where at in the US? I’m in Michigan


#18

Interested if you guys would like to arrange video chats since we seem to be spread out a bit. I can work on facilitating either Skype, ooVoo, or this app called GoToMeeting which all you have to do is have a special code. Would anyone be interested in this? Video chats bi weekly or something as such? Let me know!! :slight_smile:


#19

Kelsey, I’m in Utah.


#20

Hi

Yes, i think this would be a good thing, for those that are interested. i would be, for sure. i think sometimes it would be nice to have somebody understand what i’m talking about rather than just nodding and having no idea what it’s like…!