At the start of the year he got sick, we were hanging out for it to be over.
Saw some doctors, had some tests done, nothing.
June was an eventful month- lots of blog posts about health.
Getting sicker. And waiting between each doctor.
At the end of October we added the words chronic and debilitating.
Having words to describe it was helpful.
December- Balance clinic finally.
Some health related posts from our main blog are here.
Wednesday, June 29, 2016
Links to other people stories
Here is another article about someone elses experience,
“Coming Out” With Vestibular Migraine
And another one here in the NY times.
“Coming Out” With Vestibular Migraine
And another one here in the NY times.
Dizzy and Disoriented, With No Cure in Sight
The dizzy spells that are migraines
This article explains a lot of what Soeun has , although some parts I'm still confused about.
Read more: http://www.dailymail.co.uk/health/article-2164600/The-dizzy-spells-actually-migraines--headache.html#ixzz4CyuLt09q
Follow us: @MailOnline on Twitter | DailyMail on Facebook
The dizzy spells that are actually migraines - without the headache
Read more: http://www.dailymail.co.uk/health/article-2164600/The-dizzy-spells-actually-migraines--headache.html#ixzz4CyuLt09q
Follow us: @MailOnline on Twitter | DailyMail on Facebook
September 2012: good days are bad, breaking out of the cycle
breaking out of the cycle! a link to my blog at the time
Soeun is spending some time in Cambodia. It wasn't a planned trip, but the side effects of chronic illness got too much for us, the disappointments and frustrations. It felt like it was useless- even destructive to go on how we were. So we are feeling relieved he can have some time getting healthy, and that we are making new plans.
Soeun feels long overdue to leave Aust, we're only still here because sometimes things seem ok, so we think maybe it will get better around the corner. But now it feels like being in this situation for so long is making things worse. All the way along we have been wondering "are things too hard, should we change, or keep persevering?"
Good days in the middle of chronic illness remind me of people who smile at you but don't mean it. At the time it seems good and nice but looking back you realise you've been deceived.
Soeun feels long overdue to leave Aust, we're only still here because sometimes things seem ok, so we think maybe it will get better around the corner. But now it feels like being in this situation for so long is making things worse. All the way along we have been wondering "are things too hard, should we change, or keep persevering?"
being absent means it feels like he is more present
in August 2012 i wrote:
Over the last year and half Soeun has been sick most of the time, often feels like he's not really here. He doesn't seem like the person used to know. A friend asked me the other day how I was coping with him being away. He said something like his wife would find it hard if he was away for so long.
I actually feel like I don't cope very well with his absence, but him being in Cambodia actually means he feels more present as he is healthy and can do stuff like laugh, ride motos and he is even preaching tomorrow.
So these weeks while he is away I'm feeling ok, it was the 1.5 years before that when it was hard, when he was really absent.
Over the last year and half Soeun has been sick most of the time, often feels like he's not really here. He doesn't seem like the person used to know. A friend asked me the other day how I was coping with him being away. He said something like his wife would find it hard if he was away for so long.
I actually feel like I don't cope very well with his absence, but him being in Cambodia actually means he feels more present as he is healthy and can do stuff like laugh, ride motos and he is even preaching tomorrow.
So these weeks while he is away I'm feeling ok, it was the 1.5 years before that when it was hard, when he was really absent.
uncertainty for want of a better description- oops i mean unpredictability
I just created this label "uncertainty" as I was reading through my 2012 blog posts.
I'm trying to think of a better way to explain it, but what I meant by that was each day was kind of stressful not knowing if Soeun would get sick.
We had a diagnosis finally, and for a time he was trying out a drug. So maybe we were thinking it was over, or under control.
And some days he would have a really good day.
But then the hard days were hard, I think we forgot to expect them.
I think life is still like that a bit, but The Dizzy Monster doesn't visit us as often in Cambodia, and its not as intense.
Update: i found the word- unpredictability
http://themighty.com/2016/06/chronic-migraine-and-unpredictable-daily-life-and-treatment/
I'm trying to think of a better way to explain it, but what I meant by that was each day was kind of stressful not knowing if Soeun would get sick.
We had a diagnosis finally, and for a time he was trying out a drug. So maybe we were thinking it was over, or under control.
And some days he would have a really good day.
But then the hard days were hard, I think we forgot to expect them.
I think life is still like that a bit, but The Dizzy Monster doesn't visit us as often in Cambodia, and its not as intense.
Update: i found the word- unpredictability
http://themighty.com/2016/06/chronic-migraine-and-unpredictable-daily-life-and-treatment/
Monday, June 27, 2016
seems this was the general pattern of 2012
From July 7th 2012-refreshing
Yesterday Soeun had a healthy day! He was happy and energetic, seemed like he was The Real Soeun. We both really enjoyed the day, remembered what he was like before he got sick! Really thankful, it was so nice to have a break.
But today he is unwell again :(. Disappointing, he thought he could get some study done today.
life after a diagnosis but still in Australia
After a year of being sick Soeun got a diagnosis which seemed to make sense (although things are still mysterious, we need a label to go with so we use it). So having the name "Vestibular Migraine" seemed to help, but life was still up and down.
On June 21st 2012 I wrote this:
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.
On June 21st 2012 I wrote this:
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.
faster and slower at the same time
faster and slower at the same time (May 22 2012)
Home/family life has become much slower since we got to Australia over a year ago.
The chronic illness has forced us both to slow down in day to day things, and slightly longer term things too.
But at the same time, its feels like things are going faster. With stable electricity supply and all the machines everyone has here in Aust, things are expected to happen much faster.
Strange feeling! Only just realising that now, looking back on last year.
The chronic illness has forced us both to slow down in day to day things, and slightly longer term things too.
But at the same time, its feels like things are going faster. With stable electricity supply and all the machines everyone has here in Aust, things are expected to happen much faster.
Strange feeling! Only just realising that now, looking back on last year.
blog post from 2012- about 5 months after the diagnosis and more than a year after he got sick
better? (May 26)
One day, a few years ago Soeun had a cold. The next day I asked him how he was and he said he was better. Later I realised he was still coughing and I felt confused, why did he tell me he was better when he still had a cold?
I asked him and he replied with the Khmer word for better, the one that means "more good/gooder" and then it made sense. I had thought he meant "chea howie" which means healed.
I've been thinking about that over the last week as Soeun has been feeling heaps better than he has been since late March. When he's sick it's almost as if the real him has disappeared, and when he's well it feels a bit like he has come back to life again, his personality is back. Makes a big difference to my day if I get to see my "real" husband.
So I've been enjoying his good health lately, it very exciting. But I can't get too excited and start planning all the things that are on hold because of his inner ear migraine..... his health is only gooder than before, he is not totally healed.
One day, a few years ago Soeun had a cold. The next day I asked him how he was and he said he was better. Later I realised he was still coughing and I felt confused, why did he tell me he was better when he still had a cold?
I asked him and he replied with the Khmer word for better, the one that means "more good/gooder" and then it made sense. I had thought he meant "chea howie" which means healed.
I've been thinking about that over the last week as Soeun has been feeling heaps better than he has been since late March. When he's sick it's almost as if the real him has disappeared, and when he's well it feels a bit like he has come back to life again, his personality is back. Makes a big difference to my day if I get to see my "real" husband.
So I've been enjoying his good health lately, it very exciting. But I can't get too excited and start planning all the things that are on hold because of his inner ear migraine..... his health is only gooder than before, he is not totally healed.
timeline of 2011-2012, part 7, the summer (Dec- Feb) A diagnosis, a drug and long school vacation
Finally in December we had a diagnosis.
And the doctor prescribed a drug to try. It was hard to take but seemed to help.
And we moved out of one on campus room
and into another which had more air flow, natural light and privacy.
We travelled north twice during this time for some family events (Christmas and a wedding).
Soeun's health seemed much better. I think we had been thinking maybe we should just go back to Cambodia, as being in Aus seemed useless, well destructive even. But the end of December and January and Feb seemed ok. But at the end of March his health went downhill. And the side effects of the drug became overwhelming.
And the doctor prescribed a drug to try. It was hard to take but seemed to help.
And we moved out of one on campus room
and into another which had more air flow, natural light and privacy.
We travelled north twice during this time for some family events (Christmas and a wedding).
Soeun's health seemed much better. I think we had been thinking maybe we should just go back to Cambodia, as being in Aus seemed useless, well destructive even. But the end of December and January and Feb seemed ok. But at the end of March his health went downhill. And the side effects of the drug became overwhelming.
Sunday, June 26, 2016
timeline of 2011-2012, part 6, doctor 8
Finally in December we got to go to the Balance Clinic!!!!!
On the 16th Dec I wrote this email:
On Monday 19th Dec 2011 I blogged:
is it an inner problem?...is it a migraine?...no!..its an inner ear migraine!!
On the 16th Dec I wrote this email:
so after the long awaited hearing and balance clinic appointments they say Soeun has inner ear/vestibular migraines. he has some different migraine meds to try, these ones he was told to take everyday for 3 months then go back to the clinic
(the others ones was prescribed back in June he was only supposed to take when he gets a headache, he couldn't really tell if they work tho, and he only gets his headache sometimes, while the dizziness is constant)
so thats the current diagnosis and treatment plan, feel happy about this, Doc also said ppl with this sometimes get/have Ménierès and vice versa or something like that
(he had his balance test on tuesday and it made him feel worse, I'm glad this weeks over!)
On Monday 19th Dec 2011 I blogged:
is it an inner problem?...is it a migraine?...no!..its an inner ear migraine!!
more 2011 posts
http://khmerkronicle.blogspot.com/2011/10/chronic.html
http://khmerkronicle.blogspot.com/2011/11/sick-of-sickness.html
http://khmerkronicle.blogspot.com/2011/11/sick-of-sickness.html
a post from 2011- helpful words
debilitating
Just in the last few days I've started describing Soeun's undiagnosed sickness as chronic and debilitating. It's helped to have words to describe it. Other than that we don't really have a name for it. This makes it hard to explain it to people, and we need to explain it as it impacts our life here so much.
So we need to start planning in the light of that, not going against the flow thinking, next week will be better, next week.. next week, we'll start XYZ when he gets better.
(Yesterday we were explaining to a friend all the ways it has impacted out life and he said- it sounds debilitating. And i thought of chronic a few days ago when I realised it had been about 8 months.)
timeline of 2011-2012, part 5, doctor 7- we had been waiting in vain!
After the ENT appointment Soeun went to Cambodia for about a month. We hadn't planned any trips back for our time in Aus, but he just couldn't bear being in pain. When he was in Cambodia he got better after a few weeks I think. But then after a month back in Aus he was sick again.
By now it was October and we went to a 3rd doctors clinic to meet a new GP. She went over his whole history with us.
She was surprised the ENT hadn't done a hearing test, and after making some calls found he hadn't put the referral through that he had promised.
From the 8th of July to the 25th October we were waiting for a call from a different specialist, one the ENT said was more suited to Soeun's health. He had told us not to ring them, they would ring us, and that it would be a few months so please be patient.
But when our new GP rang up she found he had requested the a doctor that wasn't at that hospital (or was it the other way around?). We had been waiting in vain, with Soeun's health getting worse, and our whole situation getting harder, but thinking that soon we would see a doctor who could help us.
So then she wrote a referral letter for us and set it up.
By now it was October and we went to a 3rd doctors clinic to meet a new GP. She went over his whole history with us.
She was surprised the ENT hadn't done a hearing test, and after making some calls found he hadn't put the referral through that he had promised.
From the 8th of July to the 25th October we were waiting for a call from a different specialist, one the ENT said was more suited to Soeun's health. He had told us not to ring them, they would ring us, and that it would be a few months so please be patient.
But when our new GP rang up she found he had requested the a doctor that wasn't at that hospital (or was it the other way around?). We had been waiting in vain, with Soeun's health getting worse, and our whole situation getting harder, but thinking that soon we would see a doctor who could help us.
So then she wrote a referral letter for us and set it up.
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.
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.
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.
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.
same same but different (5 years on)
(from May20th 2016 on our main blog)
Last week I didn't go to Bible study as Soeun and I were both vomiting.
Then we cancelled our weekend plans because the toddler had a fever.
Then cancelled Monday because we were all recovering from that.
Then Monday night the baby got a fever, and on Tuesday night I almost went home from work when she had some other weird symptoms.
That's been the general pattern of the last few months. We keep getting sick, and keep having to change plans because of it.
In some ways it reminds me of the two years we were in Aus. We kept cancelling plans all the time due to ill health.
In other ways it is really different.
This is MUCH less stressful, although physically hard, and frustrating at least these are all short term normal health issues. The others toddlers we play with are also getting fevers randomly. People get the flu, people have tummy issues.
When in Aus we had the the physically hard side of it as well as it being so stressful. The health problems got worse and worse despite doctors visits , lifestyle changes, trying medicines etc etc. On top of that because it was hard for us and doctors to understand it was even harder for the people around us to understand which added to the strain.
I'm just realising this now, how much less stressful it is when I tell friends I can't come to events because we are vomiting and/or have fevers etc. Its easy for them to get it, as they have probably had it themselves. Sooo different to our life in 2011-2012..
Nevermind the fact that we were going through all that at the same time as living back in Aus after a number of years in Cambodia....
Last week I didn't go to Bible study as Soeun and I were both vomiting.
Then we cancelled our weekend plans because the toddler had a fever.
Then cancelled Monday because we were all recovering from that.
Then Monday night the baby got a fever, and on Tuesday night I almost went home from work when she had some other weird symptoms.
That's been the general pattern of the last few months. We keep getting sick, and keep having to change plans because of it.
In some ways it reminds me of the two years we were in Aus. We kept cancelling plans all the time due to ill health.
In other ways it is really different.
This is MUCH less stressful, although physically hard, and frustrating at least these are all short term normal health issues. The others toddlers we play with are also getting fevers randomly. People get the flu, people have tummy issues.
When in Aus we had the the physically hard side of it as well as it being so stressful. The health problems got worse and worse despite doctors visits , lifestyle changes, trying medicines etc etc. On top of that because it was hard for us and doctors to understand it was even harder for the people around us to understand which added to the strain.
I'm just realising this now, how much less stressful it is when I tell friends I can't come to events because we are vomiting and/or have fevers etc. Its easy for them to get it, as they have probably had it themselves. Sooo different to our life in 2011-2012..
Nevermind the fact that we were going through all that at the same time as living back in Aus after a number of years in Cambodia....
Saturday, June 25, 2016
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.
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.
Wednesday, June 22, 2016
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:
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
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.
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.
to give our confusion some context: this discussion is happening?
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timeline of 2011-2012 part 2, the third doctor
The first doctor said the problem was related to blood cell shape, while the second thought it was an ear issue so we wanted to get a referral to an ENT . And I think the third one didn't think there was anything wrong.
At our first visit to the third doctor looked at our pile of negative test results and listened to Soeun say he was dizzy. As a GP he sees a lot of dizzy people and he wasn't going to just send us off to a specialist straight away. He ran some of his own tests, and after waiting and going back for results we found Soeun had low vit D.
He finally, reluctantly , wrote a letter for us to see an ENT.
So then we made an appointment with the ENT and became the months long wait.
We can't remember if his blurry vision had started by this time, or if it came later.
We can't remember if his blurry vision had started by this time, or if it came later.
In the mean time Soeun's symptoms got worse, and our whole situations just kept getting harder, the longer it went on.
I think by now it was almost half way through the year.
Monday, June 20, 2016
"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.
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
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.
Sunday, June 19, 2016
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!
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.
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.
Saturday, June 18, 2016
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.
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!
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.
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.
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