About this blog

Chronic. Invisible. Debilitating. (and hard to diagnose.)


These 3 words describe Soeun’s physical discomfort when he is in Australia.



The actual blog part of this blog (Scrapbook) is partly things I wrote in June 2016 during Migraine Awareness month reflecting back on 2011-12, trying to understand things, as well as links to relevant articles I'm reading these days. And bits and pieces of other things about life with the Dizzy Monster.


Monday, June 20, 2016

"rough draft" blog


There are a list of various vestibular disorders, Meniere's disease is one.
The doctor in Aus at the Balance Clinic said Soeun has something like MD, but not MD, rather Vestibular Migraine. I'm not medically trained, and I think there has been some changes since 2011 but I gather it's something you diagnose from a collection of symptoms, rather than from any tests.

It's migraine awareness month so I thought I would try to write something concise for our main blog and/or Fb, newsletters etc. I'm using this blog to sort out my thoughts.

I guess I think of like he has something between a vestibular disorder and classic chronic migraine.

But I don't even know if we know what those are or if that's what he really has, the more we learn the more confusing it is. But we need something to say to people as it is such a huge part of our lives so I normally say he has an inner ear thing, thats kind of like MD. I mostly haven't been using the word migraine as he was diagnosed in a Hearing Balance clinic and also if I say migraine people start telling me all the reasons that people get headaches. His main symptoms are all ear related.

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