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.


Triggers? (work in progress)

The initial years were so stressful, undiagnosed and 24/7 symptoms. Now that the sickness is not totally debilitating its easier for us to see times that are worse and think about why.

This blog post sums some of this up triggers.  


So far some things that are obvious to us, things that we try to avoid so he can stay as healthy as possible:

-being in Aus for more than 4 weeks makes him too sick (hope to narrow that down, so far no luck- food? air pressure/sea level?, housedust? some high pitch noise?)

-getting up early/fast (except when staying in a village)
june 2016 trigger, see below 

-high pitched noises (such as small children screaming in laughter or pain)

-some rice in Aus such as black and gold brand, iga brand- i think the coles one was ok, and koala was ok but not great, i think thai rice we bought in sydney was ok

-some times when hes eating he has instant dizziness, the rice mentioned above and other things we are trying to track, maybe egg and lemon cupcake, recently a bread roll with ham, cheese, pickles (somethings he feels instantly while he is eating, we suspect other trigger, maybe food, build up over time) (omlette 12/8/2016- instant discomfort)

-sometimes movement such as car rides and when people talk with their hands-  think this is mostly only when he is a bit sick already, this makes it worse

****

Other suspects

-according to allergy tests we did in Thai 2013 he is allergic to house dust, dustmites and cockroach dander, that doc said his ear issues come from his dust allergy

-preservatives and chemicals in food aussie food , -  we eat more packaged food in aus and i think when food is stored some chemicals deveop (in aus the things we eat have often been stored in fridges etc for a ong time, once difference between ) we tired to do like an elimination diet for this in aus but it was such a stressful time and i don't remember any obvious results, he was so sick by the time we started maybe it didn't really work anyway

-weather changes- even pre 2011 he would get sick when the weather changed, July 26th 2016, its a stormy day in siem reap and The Dizzy Monster is here. (a storm in august set it off)
***********

This is interesting as Soeun can smell the packet of uncooked rice in aus and know its dodgy

The smell of the food is important. Patients could often predict what foods they would tolerate from smell and taste. If they had a choice of food and thought they could tolerate a food after smelling it they were usually right. If, on the other hand, they were served food by a friend or relation and noted that the food smelt aged, or “strong” but felt they should eat it they often had a reaction. 

http://www.webmd.com/migraines-headaches/guide/tyramine-and-migraines

However he is fine with khmer fermented foods, just not European (cheeses, ham, olives SOMETIMES) deli type stuff, beer and coffee is fine.

july 2016 trigger- it could be tyramine?


June 2016- a cupcake was eaten- I put the list of  ingredients up in an online support group and asked people what they thought might have triggered the VM symptoms. Pretty much everything on the list was a trigger for someone, although most of them I'm pretty sure aren't triggers for Soeun, but perhaps it was eating it altogether that did it. Or maybe the yellow colour, there are at least 2 types that are known to trigger migraines (  tartrazine and number 5 or 6)
from the group:
 ingredients : Lemon juice, cream cheese, flour, butter, powedered sugar... Vanilla syrup..

All of that! Citrus, diary, gluten and sugar!! Run!!



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