timeline 2011-2012, part 4, doctor 6- the long awaited ENT appointment

After a long wait it was finally the day when we could see an ENT doctor.

By this stage Soeun had been in pain for about half a year. Although he couldn't totally explain it I could see the impact that it had on him.

He was really excited to finally be able to come to Australia and do some study we had been talking about for the past 5 years. It was easy to see how relevant the subjects were to his work back in Cambodia.
But frustratingly the tinnitus, ear fullness, dizziness was too overwhelming for him to think clearly. These also brought on nausea and fatigue.

Half a year of debilitating symptoms  and so far all we had was a pile of negative test results. I was hoping the visit to the ENT would be a breakthrough.

But I don't even remember what he did now, apart from telling us he was referring us to another doctor. Oh and charged us a lot of money.

timeline of 2011-2012, part 3, emergency dept, doctors 4 & 5 (still waiting for the ENT appt)

The week didn't start off well.

On Sunday June 19th Soeun started getting a headache (keeping in mind he is already in 24/7 pain).

The next day on June 20th 2011 I wrote:

Went to the doc again today. Still don't know why Soeun is dizzy. He doesn't feel like eating sometimes cos he feels like he will vomit (he did vomit when the dizziness started in March), and feel like someone is blowing into his ear, as well as ringing in his ear. All the tests he has been having over the last few months haven't shown any reason why he would be dizzy , although we have found out other things we need to keep an eye on. But he's sick of being dizzy!

 It just kept getting stronger all week. We went back to doctor number 3 (on the monday and saturday of this week), that's who we were seeing at the time. I think he prescribed some migraine meds and gave us a letter to get a CT scan.

He doesn't have all the symptoms of migraines but the doctor said to try cafergot and meto something, if they help then it is a migraine , if not it still could be but might not be.

But it just kept getting worse all week, he was in so much pain, it was very scary, I thought he was going to die.

On Friday

Soeun seems to be in more pain today than before, I can't really tell cos he's not really talking. The only thing he's said was in response to my question "our housemate said she can drive us to emergency room at hospital", he doesn't want to go- i don't think he even wants to get out of bed. As he has already seen a few doctors he doesn't see what seeing another one would do. I think we are hanging out for the ENT appt next month.He took some stranger drugs and is going back to sleep.

Finally on day 7 (Sunday) of the headache we went to the hospital. I'd never been to the emergency department before. I think the only times I've been to hospitals was to meet new baby siblings. It was a long, exhausting, scary day of mostly waiting and not knowing what was happening next. I think we saw 2 different doctors- the first one you see after the triage nurse, then a Swiss neurologist.

Spent the day in hospital, from 9.30 to 5.30ish. Exhausted, neck and head sore, feel a bit disoriented or something. Its a whole other world in there, its weird being out......and I wasn't even the patient and I didn't even get bad news. I can't imagine what it would be like if I was, it was a weird enough day as it was.
Soeun had a ct scan, and it turns out there is nothing scary lurking in his brain according to the neurologist.
He's feeling mostly ok, headache finally seems to have gone, a bit gross from the stuff he had in him for the scan etc, and his back seems to have got sore since he started the new meds but doctor said not to worry.
So after a rest tomorrow he will hopefully be healthy enough to finally get into the 4000 words he is going to write over the next few weeks.

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.

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!

Chronic. Invisible. Debilitating. and hard to diagnose

Chronic.  Invisible.  Debilitating.  and hard to diagnose

Three words to describe Soeun’s physical discomfort when he is in Australia.

In 2011 he started having symptoms of a vestibular disorder. We began searching for a diagnosis and treatment, trying to pinpoint possible triggers.  Five years later we still don’t really know much except that his symptoms begin after being in Aus for a month.  He still sometimes gets sick here but it’s not 24/7 debilitation that it is in Aus.

Our feeling is that visiting Aus for more than a month would be useless and even detrimental to us. So we will probably have to make more frequent and shorter visits. We have at least 3 places we need to visit.  Each trip is a big disruption and expense so previously we have tried to see everyone in the same trip.