Turning a decade of dizziness into something positive

My vestibular migraine story

I’ve had vestibular migraine for over 10 years. I knew nothing about migraine or vertigo when I was diagnosed, but over time I’ve learned a lot, and I’m passionate about sharing this with others. I’ve even been inspired to write a book.

Trigger point – vertigo then migraine

I can trace my first migraine experience back to one morning when I felt very unwell and faint. Out of nowhere, I suddenly developed persistent vertigo (dizziness) and then, over time, severe headaches. I’ve had daily symptoms ever since.

At the time, I didn’t know what vertigo was, and it didn’t occur to me that I had migraines. What I did know was that I was experiencing debilitating symptoms, including:

• visual challenges: dizzy watching TV, nausea scrolling on a laptop, feeling unwell at the cinema
• balance problems: clumsy and unbalanced, poor spatial awareness, difficulty crossing busy roads
• light sensitivity: dislike of screens, flickering candles, striped carpets, flashing lights
• cognitive issues: poor concentration at work, slow processing of information, memory problems

Diagnosing a dizzy designer

Throughout my career, I’ve worked in digital roles, so I’m always online, using screens to read, write, and design information. This means my visual symptoms are particularly challenging. After many visits over 3 years to my GP, ear, nose and throat clinics and other specialists, I researched visually-induced dizziness and headaches, and I ended up at a specialist balance clinic. They diagnosed vestibular migraine, something I’d never heard of, and assured me that with balance retraining and the right headache medication, it could be managed.

Medication trial and error

Diagnosis was a relief, but ignorance was bliss. I didn’t realize I would spend the next few years cycling through different medications with varying side effects and completing a punishing range of eye and balance exercises to try to improve my symptoms.

I tried:

• migraine preventatives
• triptans
• Botox
• gepants
• CGRP injections

I’ve learned you have to be willing to try different things to see what works for you. And the best results for me have come from a mixture of things – nortriptyline, eletriptan and erenumab (CGRP).

Adapting to migraine life and at work

I’ve made changes to my life and how I work to make things more comfortable. For example, I’ve switched to low-level lighting at home, listen to audiobooks instead of reading, and taken up tennis as a new hobby to help my balance and coordination.

At work, I’ve had to carefully manage my time and learned to ask for help. I’ve used different techniques to help my migraine brain, gone part-time, and been open with my manager and my team so that we can adjust my workload and I can turn my camera off in video meetings.

Telling your story

It’s taken a long time for me to open up to friends, family and colleagues about having vestibular migraine. At times, I’ve found it difficult to articulate everything I’ve been experiencing to medical specialists. But I’ve learned that when you have an invisible illness, you need to be open, honest, and tell your story fully. And it’s not easy.

Thinking straight in conversations, at work, and at medical appointments depends on how heightened your symptoms are that day and what you’re being asked. Only you can describe what’s happening to your body, how you’re feeling and what impact it’s having on your daily life. I’ve tried to plan ahead of appointments, used diaries and kept a record of my medical history to help explain my symptoms. And I’ve learned to be persistent – if you don’t feel you’re getting the help you need, keep asking until you find it.

Turning a negative into a positive

Having chronic vestibular migraine was never part of my life plan! But it’s a reality I have to confront. It’s been tough at times and, despite some good success with managing my headaches, I still struggle with my visual symptoms. We live in a digital world, so it’s hard to avoid screens, which are my main trigger.

On the positive side, I’ve discovered strengths and skills at work (resilience, empathy, coping with change) and learned where to best focus my effort when I can.

I’ve also been inspired to publish a book. ‘Migraine, Vertigo and Me‘ is my attempt to explain what experiencing vestibular migraine is really like for patients. It’s designed to be migraine-friendly (paper choice, font, colors, a digestible format with summaries) and includes 101 tips and practical insights I’ve uncovered and am passionate about sharing. I hope it will help anyone experiencing migraine and vertigo, as well as their friends, family, colleagues, and healthcare practitioners.

Together we can keep the conversation going and keep raising awareness of migraine.

Thanks for reading my story!