Vestibular Migraine: The Dizzy Monster in My Spouse

Katherine SeatMy Migraine Blog, Share Your Story

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“Sorry I can’t come, my husband is dizzy.”

Katherine and Soeun - Migraine Culture Shock and The Dizzy Monster

Katherine and her husband, Soeun, who became disabled by vestibular migraine after moving to Australia.

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

And people’s natural response sound ridiculous to me: “Ok, make sure he drinks enough water.”

When we arrived in Australia, we expected reentry/culture shock. We knew we were going to be in a different world and that that would mean stress and disorientation. It’s an inherent part of your life when you’re an Aussie married to a Cambodian. I’d read books and blogs, talked to people, made my own lists of my own experiences so far. I was expecting the first few months back in Australia to be extra hard.

Being uprooted from the familiar and landing in a new place there are so many things that inevitably cause exhaustion. Even though we were anticipating this, it was still stressful and painful. But it was expected and we could understand where the stress was coming from. Some things might not have been obvious at the time, but later we could look back on it and say, well I got stuck in the middle of that road because I was crossing as if it were a Cambodian road, where drivers are nice and just go around you. (Whereas Australian drivers stick to the rules.)

At the same time we entered Australia we also entered the world of undiagnosed debilitating sickness. We didn’t know we were going into it, and so there was no preparation or expectation of what it would be like. I don’t think I even knew such a world existed. Unlike culture shock we had no way to prepare and often no way to even know why we were stressed.

What stresses did this world of undiagnosed debilitating sickness consist of?

Vestibular Migraine: The Dizzy Monster In My Spouse Featured Image

“The Dizzy Monster” Representation by the talented Serene Wyatt

Seeing my spouse in pain was bad enough, not knowing what it was, not having a name for it, not being able to do anything about it. There were a few times of acute pain when I actually thought he was going to die, and many months of feeling like he (his real personality) had disappeared under a heavy pile of symptoms. It was hard to imagine that he would come back, as despite all the things we tried he was not improving.

I could see how he had been transformed since The Dizzy Monster started attacking him, and how exhausted he was from fighting with it day and night. But doctors could only see negative test results, and to others he just looked normal. On one hand it was a relief when we got the CT scan results back and it was all clear, but also frustrating as it meant the enemy was still invisible.

I have since learnt that unsolicited medical advice is a normal part of life for a chronically ill person. The internet is full of articles on how to handle it, and mocking memes. It’s usually with good intentions when your friend or a random guy on the street tells you that his cousin’s neighbour tried cutting a certain thing out of his diet and it worked for them so you should try it too and you’ll be better in no time. But when its coming at you constantly from many people, and you’ve already tried lots of things over many months it can be a source of stress. But because you can see the giver is trying to help you, you want to be polite and say thank you, although it may be a struggle to do so.

Social isolation is another part of chronic illness life. When we first arrived in Australia and people started inviting us to things, it became to frustrating and disappointing. We would say “yes” to an invitation but on the day Soeun would be sick so I would end up going by myself, or not going at all.

As a few one-offs that’s kind of ok, but when it become a general pattern it makes life hard. Not being able to keep commitments, not being able to show people they are important to us by spending time with them. So it’s easier not to make plans, then we don’t have the disappointment of breaking them.

After the vestibular migraine diagnosis

We had a community of people around us who were trying to care for us. We found that even when friends asked how they could help we just didn’t know how to reply. The double whamming of entering the two new worlds at once was just so overwhelming.

Five years, two kids and many house moves later we are still struggling to live with The Dizzy Monster. But thankfully here in Cambodia Soeun’s symptoms aren’t constantly debilitating. It’s a new normal but he real Soeun is back!

The stresses didn’t go away when a doctor described his symptoms as Vestibular Migraine.
It’s a little known, little understood condition so in some ways being diagnosed didn’t change things. The name can lead people to think he has a headache or a sore ear, neither of which come near describing the transformation that took place when The Dizzy Monster joined the family.

We have yet to go back to the place we lived when this happened; the thought of going there makes me feel anxious. I’m hoping to do it as soon as possible and make some new, good memories.

About the Author

Katherine Seat

As the wife of a vestibular migraineur, Katherine shares her fascinating and seldom-heard perspective on the disease that took over her husband's life. Katherine's ability to capture the struggle of living with an invisible, chronic illness is uncanny, and a true testament to her and her husband, Soeun's, relationship.

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