A day in the life with vestibular migraine

When my symptoms of vestibular migraine are playing up I often watch mindless YouTube videos. Or, if dizziness means watching isn't possible, then I simply listen to them. 'Day in the life' videos on YT are often full of glossy images. People sipping an iced latte in the sun or wandering down a beach. But my day in the life with vestibular migraine is somewhat different . . .

A day in the life as a 'vestie' is unpredictable. There isn't a regular day because symptoms fluctuate and you don't really know what will happen hour to hour. I wrote this on a more difficult day. Thankfully they are getting less, but one always comes along at some point.

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What is a vestie?

I love how the chronic illness community comes up with little phrases and words to describe us, or our symptoms. A vestie? Well it's a colloquial term for someone living with a vestibular disorder. Using that term, I think, helps us feel part of a community of people with a common experience in managing symptoms. Just have a search on Instagram for the hashtag #vestie and you will find many of us there!

What are vestibular migraine symptoms?

Symptoms of vestibular migraine can differ slightly amongst those with the condition. Two of the most common are dizziness, which VeDA describes as 'a sensation of lightheadedness, faintness, or unsteadiness', and imbalance, which is 'unsteadiness or loss of equilibrium that is often accompanied by spatial disorientation'.

Other symptoms of vestibular migraine in particular, and those that affect me, are motion intolerance (can't stand being on a bus), vertigo attacks (which I am thankful to have few of nowadays), and issues with heights or simply looking at tall buildings. Cobblestone streets and uneven ground throw out my balance, and you will never catch me going on a rollercoaster!

For more on this, my post vestibular migraine triggers: managing time in the city may be helpful!

And for more on life with vestibular migraine, the article summary on vestibular migraine by VeDA is very informative.

A swirly 'morning routine'

Some people say their first thoughts on waking are of coffee, or what they are doing that day. My first thoughts are always of what my body is doing in terms of pain or dizziness. Does it feel as though I am moving? Is my head swirling? Can I lift it off the pillow without too much difficulty?

Mornings then take a little longer than they used to. Jumping out of bed is never going to happen as I would likely have a head swirl, lose my balance and end up on the floor. Instead, there is a tentative sitting up, then each foot is placed gingerly on the floor. Standing is done with care, depending on symptoms.

Breakfast is made - with a body tilt

On more difficult days my balance is off. It feels as though I am leaning to one side - usually my right side - with a tilt that makes me feel as though I am going to crash into a wall or doorframe. Sometimes, as the often-present bruises on my hips show, this actually happens.

So breakfast is made on a tilt, as I call it. The walk downstairs and into the kitchen is done with care, and in a topsy-turvy world where things aren't flat or still as they should be.

Working, and the nemesis of screens

Screen time. Yep, we are all advised to keep it to a minimum, whether living with chronic illness or not. And with migraine? We should definitely try and watch our usage given that lights, flickering images and concentrating hard can provoke an attack.

The reality though is that most of us work - on screens. Today is no exception, even though it's a more difficult symptom day. I have deadlines and bills to pay, so screen time is a necessity whether I like it or not.

There are a few ways that I try and keep symptoms from spiralling into a full-blown attack though:

• Taking breaks, often! This is so necessary for me. I try and step away from the screen at least once an hour, more if possible. I give myself ten or fifteen minutes to either rest, or to do a little household task such as folding laundry or emptying the dishwasher.
• Migraine glasses. These help block the blue light from screens, and I find them so helpful. My personal favourites are the Axon Optics and Migraine Shields. Both are lightweight and don't cause pressure on my head, and seem to calm my brain down a bit, if that makes sense. Migraine Shields has kindly offered my readers 20% off with the code throughthefibro
• Eating and drinking regularly. Inconsistent patterns of eating are known to be a migraine trigger, as is dehydration (Migraine Trust). Personally, both of these are significant triggers and not drinking enough water will quickly lead to an attack.
• If nausea is kicking up due to dizziness, then nausea relief bands are a great non-drug way to manage it. I love the Blisslets bands as they are cute and don't feel 'medical'. Blisslets has kindly given my readers 15% off with the code fibrofog
• Getting some fresh air. If possible I try and go for a walk, even if it is short, every day at some point. It's time away from screens, walking is recommended by my vestibular rehabilitation therapist for me personally, and fresh air just seems to help.

Walking with vestibular migraine

Many of us with vestibular migraine also seem to live with other conditions, and of course that can mean managing symptoms gets tricky at times. Today my hips and legs are sore and achy, likely from fibromyalgia. They need a walk, and a good stretch.

I pull on my trainers with trepidation. There was a time when walking to the end of the street was incredibly tough due to my vestibular migraine symptoms and I don't think I will ever forget it. So walking is done rather tentatively on difficult days. Here's what I do:

• Set my expectations low! I always plan to walk to the end of the street. No more. That way anything else is a bonus.
• I make a pact with myself that if symptoms worsen then I come back home. No pushing through, and no guilt for not doing so!
• Making sure I have eaten well, am hydrated and have sunglasses on if it is bright out.

Today's walk went well, and brightened my mood. In fact, it seems to have helped my dizzy head a bit which was a nice surprise!

An attack arrives, just at the wrong moment . . .

You know what they say about chronic illness symptoms - they turn up uninvited and just when you least want them to. Today I had a (very) minor surgery, so of course my head decided to complicate that by being more painful (I also have 'classic' migraine) and more dizzy and off-balance.

Thankfully my GP (primary care doctor) is well-versed on my symptoms after ten years of discussing them! I did everything a little more slowly, including moving to and from the couch in his office. Every movement was thought-through so I didn't stand up suddenly or move my head too fast. Either of those can trigger an uptick in symptoms.

Surgery went well, and I went home a little sore but relieved it was done. The bright lights necessary for the procedure weren't ideal, nor was the stress of having it done. So it was an evening of 'quiet time' with dinner from the freezer, and a TV show watched through my migraine glasses.

Every movement is done with care

I think perhaps people who do not live a life with vestibular migraine don't realise that we are constantly trying to prevent an attack or an increase in symptoms. It probably doesn't occur to them that feet are gingerly placed on the floor in the morning, that standing up is done with care or that we look around for something to grab hold of as we walk about the house on extra dizzy days.

Vestibular migraine is an invisible condition. There is so much movement in our heads, but it is unseen and so often misunderstood. It's always confusing to feel as though we are on rollercoaster or a boat, yet to others we are as still as a mill pond.

And of course, compounding the misunderstanding of vestibular migraine symptoms is the lack of pain for some. I drew the short straw and do have pain, but many don't. Yet migraine is usually thought of as a 'bad headache', which is why the diagnostic process can take years for many with vestibular migraine. It just doesn't occur to primary care doctors that dizziness means migraine, and other conditions are suggested instead.

Tomorrow's day in the life with vestibular migraine may be very different

If I wrote this exact post on life with vestibular migraine tomorrow it may be very different. Vestibular migraine, for me at least, is changeable to a huge degree in terms of symptoms and their severity. Tomorrow I could go for a run, spend hours on my computer or travel on a train with no issues.

That uncertainty is itself difficult. Never knowing when symptoms will increase makes it difficult to make plans, whether in terms of work or leisure time. I've learnt to try and think positive and say 'yes' to invites rather than always no, as I used to. After all, true friends will understand if you have to cancel at the last minute and life is for living to the full, as much as is possible for each person.

Related posts

Living with a vestibular disorder: vestibular migraine

Vestibular migraine triggers: managing time in the city

7 ways friends and family can support you with vestibular migraine

10 travel tips for migraine and vestibular disorders

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