timeline of 2011-2012 part 1, the first 2 doctors

In the second half of Feb 2011 Soeun arrived in Aus after finishing up semester 1 of teaching back in Cambodia. The first month he had sort of a cold and was feeling gross etc, we were waiting for him to recover from the semester and flight so he could get into study and Aus life properly.

However, a month after he got off the plane he woke up in pain, a sore neck I think. Vomited and felt dizzy. It was alarming.

From then on he had a lot of discomfort. Ear fullness, dizziness, tinnitus, nausea etc etc. I had said goodbye to him in January in Cambodia, and had been looking forward to seeing him again after a month apart, but he wasn't himself.

We went to a nearby doctor. After asking lots of questions he helpfully he did heaps of test straight away and ruled out lots of things. He couldn't find anything interesting except cholesterol a bit high and he has strange shaped red blood cells. Maybe somehow related to thalassemia. So after a few visits and getting back all the test results we came away with a referral letter to see a blood specialist.

Meanwhile a friend's dad who is a doctor was in the area and made time to come and see him in our on campus residence. From his brief visit he concluded it was an ear problem and we should get a referral to an ENT.

From my blog at the time, on Friday April 29, 2011

Yesterday, I went to get the rest of Soeun's test results ( we now have a bout 20 pages ). The doc gave me a diagnosis and referrral letter. However, another doc has looked at all the results and has some other ideas, so we'll see how it goes.

high pain threshold

No man flu jokes here, Soeun has had lots of physical pain.

Many moto accidents, which also meant he had his face stitched up WITHOUT ANESTHESIA.

He considered a scorpion bite nothing to write home about.

And traditional medicinal practices seem to involve pain.

So when he says he is in pain, he is really in pain!

allergy tests in Thailand

According to some tests done in Chiang Mai about 3 years ago Soeun is allergic to dust mites, house dust and cockroaches. So the doctor there reckons his inner ear symptoms come from this.

A big difference between the diets in Aus and Khmer is dairy and wheat, so that was on our sus list early on, although from our own experience it didn't seem like those were the cause. It was nice to get him tested for this and confirm that.

He also isn't allergic to mould, although that doesn't rule out getting sick from mould.

hard to diagnose

As I mentioned in a previous post "triggers..?" we looked into lots of different things. I mentioned some of them already, others what have been suggested include Lyme disease and toxic mould sickness.

The Lyme disease was mentioned to us when we were still in Aus, dealing with initial testing. A friend who lives overseas had an American housemate who had worked in Thailand as a nurse. She, the American nurse came up with the idea of Lyme but the doctors in Aus didn't see what relevance it was .

However since then, I've come across others who are also diagnosed with VM (or MAV as its sometimes called, or maybe sometimes gets mixed up with?) who also suspect they have Lyme and try to get tested for it, but apparently its hard to get tested for, there are different ways of testing or something.

Recently someone we know got sick from mould, and his wife told me about it and said the symptoms were really similar to Soeun's. SInce then someone in the online groups was diagnosed with mould sickness and had to move out of house to get better.

triggers..?

Now that we are in Cambodia and Soeun is not constantly debilitated by his symptoms, perhaps its easier to track his triggers. In Aus we tried to work out if it was a particular food or environmental thing but nothing was clear. It just made us feel more stressed.

One big suspect we had was Aussie food in general, the way its packaged (preservatives ) and stored. I met a few people who had to look into amines and salicylates for their own health.

Some common triggers such as alcohol and MSG kept coming up- but he actually has a lot more of these in Cambodia than in Aus, and probably the same amount of caffeine in both places.

 So for awhile Soeun was just trying to eat what he would eat in Cambodia (which was expensive as we lived on campus and payed a reduced rate of board which is how we could afford to live in aus).

We also looked into salt as we learnt about Meniere's disease.

We saw lots of different doctors, the diagnosis that made most sense was from the Balance clinic at hospital. It took the better part of a year before we reach there. He said Soeun 's symptoms were like Meniere's but not Meniere's, rather Vestibular Migraine.

The only clear thing is that after being in Aus for more than a month it becomes too overwhelming. People often us ask about the common triggers for inner ear issues and for migraines but none of them are clearly a yes or no.

over the last 12 months it seems these set off his dizziness etc

-getting up in the morning too fast/too early. we found this early on, the doctor in aus said it was something to do with the crystals in the ear settling during the night then getting shaken up too fast, so now we plan around this

-high pitched noises (kids screaming, maybe the kettle, which got me thinkg in maybe some electronic thing  that might be more common in aus than here? googling this leads me down the path of fake science and crazy people, but 5 years of science haven't helped so i'm getting desperate )

-some foods can make him feel really dizzy and sick almost as soon as he is eating them, i find hat really weird, and in aus there was no obvious pattern, it seemed like sometime things made him sick one time but not another, 
recently 
eggs fried in olive oil (once about a year ago while in aus he made an omelette with onion and used olive oil spread, and recently i made like scrambled eggs with olive oil and chives

Earlier this month he got sick on a day that he ate a cupcake at a fancy cake cafe and a bbq beef sandwich from the german deli (it was supposed to be a special birthday outing, but it set of his sickness, 2 weeks so far)


From someone in a support group, this helps makes sense of it:

 my understanding is that triggers can build up in layers over time. An analogy that I heard once and that stuck with me is to imagine that you are in a swimming pool and the water is up to your chest. Say, the weather is bad so the water might move an inch up. You then eat some chocolate and drink a glass of wine so the water moves up to your shoulders. You have a very late night and the water moves up to your chin and so on. If too many triggers are happening all at the same time then the water goes over your head and bingo. What I was told was that we need to try and control the triggers we have some control over (diet, sleep etc) to try and keep the water level down. Not sure that I have explained that very well but I hope you get the gist!

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.

awareness month

From this article
But then, there were some doctors who took me seriously at first and ran a bunch of tests, but when the tests all came back normal, they went to the next logical conclusion– the symptoms aren’t really happening.