Dear all,
I hope you are doing well. I posted on my diary but thought I would put it in a new topic. I am going to talk with a whole cohort of med students (around 140 students) tomorrow about vestibular migraine.
Something you want to pass along?
I am of course going to talk about my experience but I want to talk about the spectrum of experiences as well.
Hugs
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How much time you got? To speak for I mean.
In no particular order
Emphasise the no headache feature relative to diagnosis, the built-in increased med sensitivity, the Sensory stuff - photophobia, visual snow and imbalance, the huge effect on Quality of Life including the emotional toll, how as a ‘Balance Disorder’ it can take a physical toll and affect general health through lack of mobility.
As there isn’t a typical case scenario maybe talk them through a couple of different case scenarios. Yours postpartum which is quite a common one, mine maybe around menopause, a young male programmer maybe… Let them see what a mystery it all seems to be. (If you did decide on mine near beginning of my PD I copied in a section in response to a similar request for possible inclusion in a film. Might be stuff there you could use. Help yourself).
If I was speaking I would start with a few anonymised quotes from here relating briefly to the difficulty in obtaining a diagnosis (such a common theme) and the trouble coping with the symptoms. Not too sure how you stand about needing to obtain permissions for that. James @turnitaround’s bound to know. Helen
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Yeah so long as you credit this website, you can use any public information on it.
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I hope your talk went well. It’s great that you were able to do that and maybe dispel some misconceptions. For me, an issue has always been the 24/7 nature of symptoms which just aren’t believed (been told several times that dizziness can only be episodic for an hour or so as part of prodrome) or put down to GAD. I have Dr’s young and old in my family and they have told my father and brothers in conversation that it is “all in my head.” Surprised they don’t posit that I have “a wandering womb.”
Thanks for being an advocate.
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oh yes, the 24/7 symptoms… I told them “The dizziness sat one day next to me three years ago and has not left since”. I think we need to educate doctors. We are the experts on our conditions.
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