When we first found the support groups

On our main blog I recently wrote on this subject, so I thought I'd paste and link it here too. 

I joined some facebook groups recently for people with vestibular disorders. Its been really helpful to find others with similar struggles- perhaps our time in Aus would have been easier if we had known others then (maybe not, we might only be ready for this now).

Most have had their lives changed dramatically- they can't work full time anymore, or sometimes at all, they can't look after their kids, they can't drive. Its only diagnosed after eliminating other things, and by the pattern of symptoms so it usually takes months to work out what you have before you can even think about how to manage it.  By that time its already taken a big toll on your mental health, social life, work life etc.

And from reading what other write it seems some people have worked out their triggers, but for many it seems so random. Sometimes cheese sets it off, sometimes it doesn't. Sometimes the attacks come out of no where, often the buzzing and ear pressure is just always there and you have to try to live with it.

The diagnoses from a sydney doc was "vestibular migraine", but if I use that term people often assume its a headache thing (and there is a headache involved actually, but its more an ear thing).

Members discuss things like whether its useful to go to the ER at hospital if things become acute. Theres not much they can do for most ppl , and it seems many doctors aren't really aware of these disorders anyway.

People often have trouble explaining it to their family and friends, its probably the same for any invisible chronic illness (or many others things). Family often think members are making it up, or get frustrated when sufferers keep not showing up to things. They get blamed for being unreliable and/ or lazy.

It seems like there are lots of different drugs people are trying.

Thankfully SOeun's symptoms are much less debilitating in Cambodia, so he can do many things here and live almost normally. It s hard when he is a bit sick though, it becomes a bigger problems than pre march 2011. Life is still frustrating but not as bad as when in Aus.

Just a short plane ride away is Bangkok, full of doctors and hospitals. Maybe we should start seeing a doctor there to help with management or maybe that would be a waste of time and money? Its hard to know.

online support groups are great, joining a new community is hard- the social side of invisible chronic pain

"Sorry I can't come, my husband is dizzy."

It sounds kind of ridiculous to people. Why would I need to cancel something just because my husband is a bit dizzy?

And people's natural responses sound ridiculous to me.

 "Ok, make sure he drinks enough water."

"Maybe he has too much XYZ, or not enough ABC." (insert whatever dietary or environment things the speaker has had experience with, MSG, exercise etc etc etc )

"Hope he gets over it soon."


Its been such a relief to join some online support group for vestibular migraine sufferers. After 2 years in Aus with debilitating symptoms and confusions, then a few years back getting better but not back to pre March 2011 we are still trying to understand Soeun's health.

Reading other people's experience has really helped, not only the physical side of things, but the social side, trying to explain it to people. Its hard for us and doctors to understand so you can imagine for friends and family its even harder. He has pain and discomfort a lot of the time and it stops him from doing things, which is really frustrating for him.

We recently moved to a new town and joined a new church, so our current community doesn't know what he was like before he got sick, and they don't know what it was like for us when it was at its worst. He is able to do a lot now, but not as much as he would like. Frustratingly he has been sick the last 2 weeks  so is missing out on time with people (extra stuff on at church due to a team visiting from overseas) as well as all the teaching / preaching prep he wants to be doing. I don't think they get that he is sick.