Thomas Jefferson University Department of Otolaryngology is currently enrolling participants into a clinical study for Migraine Associated Vertigo also known as Vestibular Migraine.
The purpose of this study is to see if the study device reduces symptoms of vertigo associated with migraine. The device is a headband that vibrates behind the ear and has been researched with other hearing and balance disorders.
Modest compensation will be provided for participant’s time and travel. This study will require a medical history and physical exam, as well as one 1-hour visit to Jefferson Otolaryngology and four 20-minute phone calls over 8-weeks. Volunteers will need to wear the provided study head band when they are having a vertigo episode and answer a questionnaire when they wear the headband.
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Does it have to be true vertigo or just disequilibrium or dizziness?
Sounds like they are looking for episodic vertigo victims to me. Wonder if there’s anybody on here who’d qualify. Helen
What’s the point of a MAV study that disqualifies most MAVericks?
To get their predicted results they need to ensure they select people that match their preconceived ideas? Perhaps somebody ought to try and have a word with them. After all for most MAVers it’s not as much wearing a headband when you have vertigo as is it OK to take it off while you shower. Helen
Just so you guys know, I was politely approached by the company for permission to post this. I granted it. I have no affiliation with this group and there is no financial arrangement in place.
We know. We appreciate anyone who does research on behalf of MAV or any of our dizzy compatriots. If the device helps just a few of us, then it’s worth it. But it sounds like the vast majority of us don’t fit in the study group. The study sounds more like a study of vestibular paroxysmia or vestibular neuritis than Vestibular Migraine.
@adepireux would you like to respond to that?
@Manatee our resident vestibular paroxysmia patient
That’s one of mine, too. Right side, artery on the 8th nerve. But as long as I don’t go from the ground up to the right, I can avoid completing that move as a triple lutz where I fail to stick the landing.
Absolutely. My question would be, What’s the best way of conveying this info to that study’s authors though. Must be some way. We 24/7 affected MAV types must be the tiniest imaginable minority worldwide. That must be why it’s not recognised. Surely, putting our own individual variants to the side for one moment, there must be some slim chance here of ‘educating’ somebody who at least has some, albeit distorted knowledge of MAV. Best way forwards? Anybody? Helen
Disequilibrium and dizziness are accepted by the study coordinators.
What would we answer on the “How many episodes of acute onset vertigo have you had in the past 12 months that lasted at least 15 minutes?” …my dizziness is constant without vertigo attacks
I was wondering that, too. A hundred, a thousand? Just the one set on infinity?
So, like me, your answer would have to be ‘None’. Do you never experience true vertigo? Some don’t.
Have they actually defined ‘vertigo’, ‘dizziness’ etc for the purpose of their study? Helen
I suspect it must be very difficult for someone who has never experienced any of it to actually define the difference between vertigo, dizziness and disequilibrium. It is only relatively recently that I have been able to put the different feelings into definite boxes! Still don’t know how to ‘label’ the short, violent spins/pushes/kaleidescope vision episodes which seem to be my latest addition to the repertoire! Here’s hoping that whatever the headband is meant to do will at least help some!!!
That sounds like that might be true vertigo to me. There are distinct clearly defined definitions the medics use though interesting the UK and US ones differ - odd, eh. Mine have also be so different as to be easily labelled so far, but everybody’s different. Helen