I'm going to be in a migraine study

Hey Gang,

On the way to my job interview today there was a senior lecturer and doctor sitting behind me on the bus. I overheard them talking about migraine. So I asked them what they knew about it and what they were doing and did they know what MAV was. They did not. As I ran out of the bus, I gave him my email address and now back from the interview, there was this note:


My colleague James and I met you on the bus today, thanks much for making your presence known!!
I’d be interested in hearing about migraine-associated vertigo, which I didn’t know about, and am also curious as to whether you’d be willing to participate in our research study of migraine.

At the Sydney Eye Hospital on Macquarie St in the city, we have been testing the brain response of migraineurs to visual stimuli, using a technique called multifocal visual evoked potentials. If you’re possibly willing to participate, my associate will send you some documents and something on which you are to record any migraines you have between now and when we test you. I don’t know how frequently you get migraines, but basically we only want to test people at 2 weeks or more after their last migraine. You would be compensated somewhat (with cash) for your time.


How fantastic is this? I can’t wait to tell them about MAV and how many people are walking around with chronic migrainous vertigo. This is just the stuff we need to get the word out and for more solutions to be found. The forum admin is about to become a lab rat! :lol:

Scott 8)

Good for you for speaking up, you MAV lab rat, you! :lol:

Scott,
Surely you will both be a benefit to one another. I think they are looking for more “textbook” common types of migraine, so letting them know about “us” will hopefully prove useful. Look forward to hearing how it goes…
Kelley

Nice one Scott :smiley:

Hey Scott - Thats great news - spread the word! I feel the need to tell everyone - I need people to understand!
Tracey

I wonder if they would be interested in me too? I’ve actually done the VEMP at Sydney eye hospital, back in 2002 when I had optic neuritis along with a virus and/or MAV. The optic neuritis is confirmed although Halmagyi and I also discussed retinal migraine… what do you think Scott - worth me getting in contact? I’ve had a migraine this afternoon in fact (still am) so could look at clearing my diary in two weeks’ time… :wink:

— Begin quote from “scott”

we only want to test people at 2 weeks or more after their last migraine. You would be compensated somewhat (with cash) for your time.
Scott 8)

— End quote

Do you actually get MAV attacks that have a defined end? Just wondering if MAV fits their criteria in terms of timing. My MAV bouts seem to fizzle out over a few days so I can’t say ‘it stopped on Friday’ for instance.

Still, sounds interesting and always good to spread awareness…

D-I

Scott - Awesome.! You’ll have to keep us updated. I don’t know how researchers wouldn’t already know something about the other forms of migraine, though most people associate migraine with just the horrible head pain, etc. experience.
Dizzyizzy - classic migraines don’t always have a definitive ‘end’ to them, either… they rather dissipate as well from what my ‘regular’ migraine friends and associates tell me. They usually say they can count on at least 3 days of knock-down misery. Oh, the joy.
Gail

Congrats Scott! :smiley:

i always knew you were a rat :lol: that’s awesome!!
nicki

Hey Scott, great news and good luck. I just saw another neuro and she told me that I shouldn’t be having unsteadiness and a rocking sensation because of migraine. Hopefully this will make more people aware of our condition.

— Begin quote from “stevenf”

I just saw another neuro and she told me that I shouldn’t be having unsteadiness and a rocking sensation because of migraine. Hopefully this will make more people aware of our condition.

— End quote

Hey Steve – that’s absurd isn’t it? Rocking and unsteadiness are textbook symptoms of MAV. Unbelievable. :roll:

OK, that’s just plain stupid. Another stupid doctor… I’m sure we’ve all seen our fill of them. Where do they get their training…at a gas station ?? That’s like the ENT who diagnosed Meniere’s telling me that it was irrelevant that Advil or Topamax diminished my dizziness. Whaaat?? Really?? This is exactly the reason people end up on this forum desperately chasing answers.
Gail

— Begin quote from “miniandelsa”

OK, that’s just plain stupid. Another stupid doctor… I’m sure we’ve all seen our fill of them. Where do they get their training…at a gas station ?? That’s like the ENT who diagnosed Meniere’s telling me that it was irrelevant that Advil or Topamax diminished my dizziness. Whaaat?? Really?? This is exactly the reason people end up on this forum desperately chasing answers.
Gail

— End quote

Gail, where do you live? I’m in Australia and I’m feeling compelled to defend our doctors. I’ve actually had a series of really great doctors who seem pretty clued up about migraine. Back in 2002 when I had optic neuritis (which was accompanied by a virus and/or migrane) I had a doctor in Goulburn who quickly identified possible optic neuritis (correct) neurologist in Canberra suggest migraine (correct) and a physcian who specialised in neurology in Byron Bay suggest migraine (correct) and it was ME who said they were all wrong about the migraine.

More recently (two years ago) when I was badly MAVing again (but not knowing that’s what it was) my GP tested me for everything under the sun before insisting I go to Halmagyi (I didn’t want to as symptoms then resolved). It was Halmagyi who confirmed MAV. He’s one of the top international migraine gurus. And he works only a couple of kilometres from my place!

To be fair, the vertigo part of MAV is only lately becoming more well known and understood. For those of us who have it it now all makes perfect sense but migraine has so many crazy symptoms and there is still so much to learn. What I think is really encouraging is how receptive many doctors are to new information - my GPs (I have 2 favourites), these guys on the bus Scott met etc. AND a bunch of them have posted on this forum. We’re all working together!

Vic

— Begin quote from “Victoria”

Gail, where do you live? I’m in Australia and I’m feeling compelled to defend our doctors.
Vic

— End quote

I have to say that my GP (small country town) felt it was migrainous , but wasn’t willing to start me on preventer meds without seeing the neuro given that by that point I’d been symptomatic for 1+ months and she wanted a second opinion. The first neurologist (a generalist) I saw (Albury) diagnosed me as vestibular migraine on my first visit - although probably helped by a strong family migraine history and the fact that I had had 2 “classic” visual aura experiences in the 6 months prior to visit (zig zag flashing light show that they show on the painkiller packets).

Having said that I am off to see Waterston in Melb in January, but not really searching for a diagnosis. It’s just given what I know now about the condition I’d like to review my management plan and treatment options with someone that specialises in this area as I suspect by now I’m more clued up on MAV than our local generalist (nice as he is) :lol:

Might be an interesting appointment as I’ve been warned that although he really knows his stuff Waterston is not really, shall we say, a “people” person according to one friend that has seen him :lol:

We now have a new super hero,
Good on you Ratman.

I’d like to see somone try and use me for a study, when my mav was bad they could have studied me day and night, It was honestly a never ending story.
Thank God for good ole fashion TCa’s.

An ENT told me I had Mav, and to get to a neuro.

jen

Yes, I think it does depend on “luck”, where a person lives (I live in the Bay Area of Northern California - lots of top notch doctors here), and the kind of doctors a person ends up seeing due to symptomology. At the beginning of my illness journey 3 years ago, pain was a large part of the picture, but it was less than 6 months later that the dizziness usurped it all with other weird neuro symptoms and fatigue. Because of the doctors I was seeing, they were dialed into chronic fatigue/fibro. I get angry when doctors see a patient isn’t improving and then don’t have the honesty, integrity, intelligence, creativity, patience, etc. to refer the patient “outside the box” to other specialists such as ENT’s, neurologists, etc. THAT’S where I think it gets just plain stupid - when doctors get locked into their own little practice box. I have had and currently have wonderfully competent doctors. However, I referred myself to most of my specialists. I’m just saying…
Gail

Hey folks,

I heard back from the lecturer on the bus and he had this to say:

Thanks for your message. I read most of your MAV document. MAV sounds very unpleasant, although fascinating from a clinical point of view. Trying to determine what if anything triggers the events must be a very frustrating experience. About that-- a colleague of mine in San Diego has developed a website called mymigrainejournal (mymigrainejournal.com) that analyzes daily records for correlations to help people determine the triggers. Please use it yourself or pass it on to anyone who you think might find it useful.

As for our experiment here, I’m copying xxxx on this email- she is a USyd student who often conducts the multifocal visual evoked potential testing over at Sydney Eye Hospital. She will send you some details, and I hope that, if you’re happy to be tested, you can work out a time with her to be tested- she’ll be available after 10 January.

So far, we have found some statistically significant differences in mVEP response between migraineurs and controls, which is thought by many to reflect differential excitability and habituation processes of the average migraineurs’ brain- in this case, in the visual cortex specifically. We are working on the manuscript now, and a master’s student in psychology has recently completed her thesis on it.


I checked out the link briefly and it is definitely worth a look for trying to nail down triggers. Full link here:

mymigrainejournal.com/

Scott

That is great news Scott! Please keep us posted…

Joe

Funny how some things come to be. Good for you Scott for speaking up.