what was life like in the 2nd year of being sick?

On June 21st I wrote:

Last week was a good week for Soeun. Relatively speaking he was healthy, he had an intensive class, so it was really exhausting but he made it through the week. I sent an email to our prayer partners to let them know. We were really thankful for this as last time he had a class it took almost 2 months before he was well enough to do anything.

But this week he has struggled to see clearly, blurry vision is one of the problems caused by his inner ear migraine. Not being able to focus his eyes well enough to read is really hindering his study, as you can imagine. He is more healthy than last year, but its still an ongoing issue. We're both really sick of living with sickness!

One thing that has made this week bearable is that we enjoy where we are living this year. We have our own space to relax in. The recent public holiday was a really nice day, I spent the whole day inside watching the rain and reading.

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.

"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.

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.