My vestibular migraine journey

By: Jay Evans, who lives with migraine with aura and vestibular migraine

13th July 2022

My name is Jay, I’m 28 and in April 2021 I started my challenging journey.

One night in April, I got a twitch in my finger. Then, one evening, I suddenly developed a tremor in both hands and I couldn’t control it. I went to A&E that night and they believed I’d had my first seizure. I was told that typically new initial seizures can be a sign that a big one is on the way. I spent the next two weeks terrified waiting for it to happen.

Two weeks later, the twitching stopped and the tremor had calmed down. The next morning, I woke up to the most unsettling feeling I’ve ever experienced. It was like I went to bed in one body and woke up in another. I was hit with this wave of dizziness, light-headedness, balance problems, brain fog and what I can only describe as vertigo but it wasn’t “true vertigo”. Without the help of my partner Liv, I could barely walk, get out of bed, or just function in general.

More symptoms kept coming, the feeling of movement when not moving, seeing white spots in my vision, my eyes kept moving rapidly especially at night and I couldn’t focus them, my tremors came back lightly in my hands, as well as random muscle twitches.

Have you ever leaned back too far in a chair, so it was about to tip over and had that second of panic as you lunge forward trying to stop yourself? Or come off of an elevator and felt like the floor is moving under your feet? It was like that, all day, every day.

I saw a neurologist who said he was 90 percent sure it wasn’t serious but there was a 10 percent chance it could be something more severe, he mentioned many diseases, one of which was motor neurone disease (MND). I remembered the ALS (amyotrophic lateral sclerosis, another term from MND) ice bucket challenge a few years back, I’m sure most of you will remember. Although it was a tiny chance that that was what it was, I had never been more terrified in my life than at that point.

I then had months of different tests and scans, which were clear. However, I couldn’t shift the thought that 1,100 people in the UK alone are diagnosed with MND each year.

For months my symptoms continued. I saw specialist after specialist and eventually, after about eight months of the unknown, I had a breakthrough which all the specialists agreed on… vestibular migraine. What is that??

I’ve always suffered from migraine with aura, but this was new. Vestibular migraine attacks are caused by a nervous system problem that can damage your vestibular system (which controls balance). My ears and brain stopped communicating! Although I’m very relieved it wasn’t serious, my diagnosis has been life-changing. I’ve been extremely lucky with my symptoms, but many people with this type of migraine aren’t so lucky. They can experience full vertigo for days/weeks/months at a time and can’t carry out day-to-day activities.

Helping others with vestibular migraine

I’ve managed to get my symptoms under control and I’m nearly back to normal life now. I’m so grateful it wasn’t any worse and now I want to use my experience to help others by raising awareness of these diseases.

I recently took on the Conqueror Challenge, a 149-mile virtual walk down the great ocean road in Australia. I started my walk on June 1st and finished at the end of the month.

It’s about 11,500 steps a day, which might not seem like a big challenge, but since my vestibular migraine started last year, I’d been doing, on average, 928 steps a day, so it was tough!

I’m thrilled to have raised over £700! All the money raised will be split equally between two charities, The Migraine Trust and the Motor Neurone Disease Association.

So little is known about both of these diseases and both are very difficult to diagnose and treat, with no cure for either. So many people spend months if not years in the dark. They need our help so these fantastic charities can continue research to learn more and understand the diseases and find new treatments.

I thank everyone around me who has been here to support me. I now ask you to stand with me to help support those going through these difficult and life-changing times and give whatever you can to help.

You can support Jay’s fundraising efforts here.

Read about Jenny’s experience of vestibular migraine here. Learn about the different types of migraine here