Living With a Migraine Variant Balance Disorder

Photo by Pawel Czerwinski on Unsplash

Why I’m Writing This …

In May 2023, after about 3 months of alarmingly poor health, I was diagnosed by my neuro-otologist with a migraine variant balance disorder. When I got home I did what most people do following a diagnosis they’ve never heard of before: I googled it. To my great surprise, I couldn’t find a single web page about my condition. It isn’t listed on The Migraine Trust’s website. All of the results in Google — and also on YouTube where I checked next — were about vestibular migraine, which is not the same thing.

Now, it’s worth mentioning at this point that I work in digital marketing. I spent years as a content marketing manager trying to come up with new ways of rehashing blog post topics that had already been written about a thousand times before. It was incredibly disconcerting to search for something and not be able to find an adequate source of information about it. I hadn’t realised before how important that kind of validation is. Does this condition actually exist? The only proof I have of it is my doctor’s letter. What if I misremember how the medical professionals explained it to me? How can I check that I’m doing the right thing and not making myself worse?

This post outlines my experience of a migraine variant balance disorder over the past year. I’m writing it for three reasons:

1. As a way of slowly building my tolerance to computer screens and engaging my brain while I’m on long-term sick leave
2. As a record of what I’ve experienced and what I’ve learnt about the condition and about myself, in the hope that the next person who searches for “migraine variant balance disorder” might find it and won’t feel isolated in their diagnosis
3. As a form of catharsis — I like the idea of leaving the trauma on the page so that I can move forward when this is all over (and it will be!)

I promise now not to be too melodramatic or doom and gloom about it — at this point I’ve tried so many migraine “cures” and found surprisingly good coping mechanisms that might help you too if you’re in a similar situation. So, if you’re still here and you want to hear my story, read on.

Skip ahead …

• Before: Migraines with Aura
• Before: Vestibular Dysfunction
• February 2023: Attack of the Mega Migraine
• May 2023: Getting Treatment
• June-September 2023: Getting Better
• October 2023: Feeling Worse
• November 2023: Long-Term Sick Leave

Before: Migraines with Aura

I think it’s important to give a bit of background information before I get to the main event. Migraines were nothing new for me — I’ve had them since I was 13. They tend follow a reassuringly similar pattern:

Step 1 — aura

The first sign that a migraine is coming is a visual disturbance known as an aura. For me this manifests as a small piece of my vision “missing” in the centre left. The first few times this happened when I was a teenager I found it terrifying. I remember looking at my textbook in class and seeing words disappear. The aura can vary in size, and the size usually tells me how severe the migraine is going to be, from a pinprick to a £2 coin. The bigger the shimmering patch of nothing obscuring my vision, the worse the migraine.

Although auras are disorientating and nauseating, they are a useful warning system telling you to stop what you’re doing and prepare for the headache to come. Mine tend to last for 20 to 30 minutes, which would give me enough time to take medication, make my way home if necessary and get into bed.

Step 1.5 — numbness and tingling

If the migraine is particularly bad, I get a tingling and numbness in my tongue and lower lip. This lasts for maybe the first hour of the episode.

Step 2 — headache

Next comes the headache. For me, migraine headaches feel quite different from dehydration or tension headaches, which I get relatively frequently. (I consider myself something of a headache connoisseur at this point.) The pain is rarely identifiable as being in one place in my head. It radiates out with pulsing ferocity that is literally sickening. It feels tangy and almost electrical, like an overloaded fuse box. There’s no way I can work through it. No medications I’ve tried — and I’ve tried a lot — are able to touch the headache. All I can do is ride it out.

Years ago I trained myself to sleep through them. My body seemed to know that shutting down in a 4-hour sleep would skip the worst of the pain. Usually the headache recedes to a dull ache after 7 hours or so.

Step 3 — sickness

This is the part that I hated most when I first started getting migraines. About halfway through the episode — maybe the 5-hour mark — the nausea would build until I vomited, sometimes multiple times.

Eventually I worked outa routine that allowed me to cope with a migraine episode with little fuss. Although none of the prescribed drugs I tried prevented them, I would always take Migraleve as soon as I developed an aura. This helped me to sleep and prevented any sickness when I woke up. It meant losing a full day, but I was comfortable with how I managed it.

Over the years the number of migraines I had waxed and waned along with my stress levels and the amount I used computer screens, which have always been my biggest trigger. I would estimate 4 migraines a year as normal for me, if I looked after myself and didn’t do things that I knew would trigger a migraine.

Before: Vestibular Dysfunction

Aside from my migraines, I developed some strange visual symptoms when I was about 18, which steadily got worse over the years. I jokingly said I was “allergic to stripes”, because high contrast parallel lines and intricate patterns made me feel sick. I know this sounds bizarre, but it’s surprisingly debilitating. Do you know how many things are stripey? Road markings, window blinds, escalators, railings — not to mention clothes. They strobe in front of my eyes the way stripey things do on TV, making me feel nauseous and headachey. I also became more sensitive to bright lights and flashes.

No one seemed to know why this was happening to me. My GP wondered if it was related to my migraines but couldn’t explain why it was getting worse. I had a full examination at Moorfields Eye Hospital, who gave my eyes a clean bill of health. I had a CT scan after a trip to A&E (I’m not even going to go into that one) which was all clear. I was basically told that I just had to live with it.

It is only after talking to a neuro-otologist last year that my condition was identified as vestibular dysfunction. Way back in my first week of university in 2011 I got labyrinthitis, which is an infection of the inner ear. The symptoms were very strange — I was sick every morning without fail, and every time I climbed a flight of stairs I got so dizzy I had to sit down. I almost fell off a ladder in the library.

At the time I had antibiotics for two weeks and didn’t think anything else of it once I felt better. It turns out that something got damaged in my vestibular system then, and it never fully recovered.

Your vestibular system relies on various sense receptors to function properly: your inner ear, your eyes and your neck and feet. Because my inner ear isn’t working as it should, my brain is over-reliant on my eyes to gather the sensory information it needs to situate myself in space. Hence: my brain perceives a world too stripey and bright for comfort.

February 2023: Attack of the Mega Migraine

So now you know a bit more about me and my hypersensitive brain, I can tell you about what happened 11 months ago.

I was working as a strategist at a digital marketing agency, growing my own department and sitting on the leadership team as a Managing Partner. I loved what I was doing and felt in total control of my health. I hadn’t had a migraine for 6 months, so when it came to working late one Wednesday night to get a PowerPoint presentation finished and proofread, I pushed myself further than I knew was strictly healthy. I was on the computer pretty much from 7am to 7pm. But it was just one day — how much could it hurt?

I was tired the next day but I thought I got away with it. Turns out it was building like an avalanche — and it finally struck on Saturday 18 February.

The aura was bigger than it ever had been before. The right half of my vision disappeared, becoming a shimmering, pulsing grey that made it hard to see anything. I had to feel my way up the stairs to get to bed. My bottom lip and tongue were numb, and my left arm had pins and needles that wouldn’t go away.

As usual I took some Migraleve and tried to sleep, but for once the pain was so intense that I couldn’t sleep through it. I lay there for hours trying to breathe through the headache, telling myself that a migraine had never killed me before. In a few hours I would feel better.

But the thing is … I never truly recovered.

Even when the headache receded, I felt nauseous and dizzy. My balance was off kilter. I found it harder than ever to look at screens or flashing lights. My vision felt too sharp, too sensitive, like when you try on the glasses of someone who has a prescription that’s too strong for your eyes. Busy places like train stations and shops made me feel overwhelmed and disorientated. A week later I got another migraine. Then, a week later, another. And another.

I felt constantly seasick and hungry. There was so much that I had to stop doing because it triggered me: reading, exercising, driving, going to the supermarket, using screens for more than a few minutes at a time — which is pretty disastrous for someone who works in digital. Permanent dark shadows under my eyes were the only outward sign that anything was wrong (I like to think of the look as “Twilight vampire chic”).

Here is a series of attractive selfies charting the under eye shadows:

I started noting down all my symptoms in a note on my phone. Here is a direct copy and paste:

• Visual strobing of stripes and high contract colours
• Headaches/nausea from using screened devices too much (especially scrolling), reading/writing, difficulty focusing
• Dizziness/seasickness
• Lack of balance
• Ringing ear/s
• Stiff shoulders and neck
• Severe dizziness/loss of vision when standing up too quickly
• White wiggly lines at edges of vision when straining, eg. Doing weights
• Migraine aura with eyes closed — same pinpoint in the centre left as I get when my eyes are open as an aura
• Regular shivers/chills
• Hungry but nauseous
• Fatigue, sleeping a lot
• Tension headache — pain and pressure like a vice at the base of my skull, alleviated by a heat pack
• Pressure in my head when lying down, shifts as I move
• Bruises under eyes, gets more pronounced when a migraine is on the way

It got worse. I had planned to celebrate my 30th birthday in May at a rooftop bar in London, but that week turned out to be one of the worst weeks of my life. I had a migraine every day for eight days in a row — and that was after already having dealt with 10 migraines since the epic one in February. It was utterly exhausting and debilitating. My friends and family were all worried about me.

I started to get really scared. This wasn’t normal and I wasn’t coping. My NHS GP didn’t have any available appointments for two weeks, and I knew that it would take months to see a specialist. Luckily I have private healthcare through my husband’s work, which meant I was able to find a private neurologist and see them pretty quickly.

Two months — and 19 migraines — later, I was diagnosed with a migraine variant balance disorder.

May 2023: Getting Treatment

So what was happening? They told me to imagine a jug inside my head. A normal person with a normal brain may have a jug that is 40% full. If they are stressed, the jug might fill to 60% as their brain works harder to process everything.

My brain, as already established, is hypersensitive. For a long time it has scraped by with a damaged vestibular system, so at default the jug is 80% full. Every time I did anything that might cause some stress to my overworked brain — looking at a screen, doing exercise, trying to read a book — the jug would fill and overflow, triggering a migraine. That migraine would then irritate my damaged vestibular system, which in turn would fill the jug back up and trigger another migraine. And so on and so on — that first mega migraine and the ensuing cycle had caused a “wound” in my brain that wasn’t getting a chance to heal.

I was immediately put on a strict diet and supplements, told to stop all but light exercise, reduced my hours at work and started taking prophylactic medication. All of this was to help “drain my jug” and stop the debilitating cycle of migraines and dizziness. I had physio exercises to help with my balance, on the understanding that once I was out of the acute stage I could start vestibular rehabilitation therapy to help right my pesky vestibular system once and for all.

The doctor told me that recovering from a migraine variant balance disorder is a marathon, not a sprint. For some people it can take years to get back to normality. When I was first told this I refused to accept that reality for me. I would put together a recovery plan, I wouldn’t let this condition take any more of my life than it already had. *Cue recovery montage sequence.*

June-September 2023: Getting Better

It got worse before it got better. Throughout May, June and July I averaged 3 migraines a week, although they were less severe after making the changes to my diet. Weirdly I no longer had auras to signpost that a migraine was on its way … instead I had a permanent aura that never went away. For about 4 months solid there was a floating pinprick in my vision that stayed there even when I closed my eyes. (It still comes back when I’m at a low ebb.)

When I didn’t have a migraine I felt sick and dizzy — which was less acute but just as debilitating. My rest days pretty much consisted of going for walks and listening to audiobooks; anything more made me feel ill. However, I tried more and more ways to cope and found some that worked for me. See below: my “cool helmet” and blue light filter glasses. And look, finally a photo of me from 2023 without shadows under my eyes!

As the months went on I put all of my energy into work, cutting screen time out of the rest of my life so that I could be on the computer during my reduced hours. I felt like I was constantly letting people down. My colleagues and clients, when I had to cancel calls and rearrange deadlines; my friends, when I had to flake on plans at the last minute; my husband, when I had no energy left at the end of the day and couldn’t do anything more than lie on the sofa.

But slowly, carefully, I was making gains. In September I went on a 10-day trip to the USA and I felt better than I had in months. I didn’t wake up every day feeling like I had an awful hangover — it was a revelation! I came back rested and ready to increase my hours back to full-time as per the recovery plan I put together in May.

October 2023: Feeling Worse

The week I returned to work in September I had migraines for 4 days in a row. After that, I felt like I could barely keep my head above water. I woke up with a normal autumn cold one morning that I had felt building for a few days, and I was so dizzy I could barely get out of bed. It felt like I had taken a massive punch to the vestibular system and all those months of recovery … Undone. It was just as bad as it had been in the spring, and the realisation that I had gone backwards was devastating. The next time I went into work I fell down the stairs while dizzy and rolled my ankle. I knew then that I wasn’t coping.

I made an appointment to see my neuro-otologist again. He told me that what I was experiencing happened in 70% of the cases he saw — recovery wasn’t going to be quick or linear, there would be peaks and troughs. For the first time I acknowledged the fact that I wasn’t going to be better within six months. This was a long-term illness and I couldn’t just fight my way through it through sheer willpower.

November 2023: Long-Term Sick Leave

I knew that I wasn’t giving myself the time or space to get better. The doctor had told me it was better not to stop work completely, as it would make it much harder to go back to normal in the long run — but I knew that the stress and screen time at work was my biggest trigger. It was also draining all of my energy and stopping me from improving in other areas of my life, like reading, exercising and shopping.

Eventually I came to the decision, supported by my neuro-otologist, to go on long-term sick leave. I had resisted it for so long because it felt like admitting defeat. What would I even do with myself? I’m a planner, a doer, an optimist. Looking ahead at three months of doing nothing was scary.

But … I’m so glad I did it. Now, as I come to the end of three months on long-term sick, I’m in a completely different place to where I was last October. I have retaught myself how to read and write, rediscovered passions that have brought me joy and spent valuable time with friends and family over Christmas. There’s still a long way to go but I’m comfortable with the journey now.

I’m not ready to go back to a full-time office job yet, but there’s plenty to occupy my time while I recover. So — I’m happy to say goodbye to a truly shitty 2023 and I’m excited to see what 2024 brings.

Over the next few weeks I’m going to be publishing the following posts:

• Migraine Treatments: What Works and Doesn’t Work for Me
• How I Taught Myself to Read and Write Again
• Does a Migraine Diet Work?
• Being Photosensitive: Life in a Bright and Stripey World
• Chronic Migraines and Mental Health
• What to Do on Long Term Sick Leave
• What I’ve Learnt About Managing Migraines and Vestibular Dysfunction

If you’re interested, please come back and check them out!