My vestibular migraine experience

By: Jack Evans, who lives with migraine

20th April 2023

A week before my 26th birthday my vestibular migraine symptoms began. I felt constantly dizzy 24/7.

When you’re having a vestibular migraine attack it feels like you’re incredibly drunk. The difference is that even though you feel drunk, you’re mentally still all there. I would look in the mirror and think, am I swaying or is my head wobbling? It’s like you’re under water. It’s a constant uneasy swaying sensation. You feel like you’re a guitar string and you’ve been pinged from head to toe and can’t stop vibrating.

Jack smiling

My healthcare journey

Everything started in August a couple of years ago. I was really run down and had tonsillitis and impetigo. It affected my ear and I think I might have had labyrinthitis. I experienced a sensation I’d never had before and said to my sister, I think I’m having a stroke. I went to A&E and they laughed and said it was just anxiety about Covid. A doctor then said I had the worst case of tonsillitis they’d ever seen. I went home and felt like I was rocking on a boat. I returned to A&E and they put me on an IV drip and then sent me home again. I was swaying as I left the hospital.

The dizziness made it so difficult to walk down corridors or past things like fences, it would send me into a weird spin. You can’t walk past grids, floor lines or bright lights. I was working in a hospital at the time which was really difficult.

I wasn’t diagnosed properly until the next January when I had an appointment at a balance clinic at the hospital. I burst into tears when I finally had a diagnosis. They said it wasn’t my inner ear but actually vestibular migraine. I’ve also now had the diagnosis confirmed by an ear, nose and throat (ENT) consultant.

I was put on Amitriptyline as a preventive medication which took eight weeks to work. I also begged my GP for a brain scan as I was convinced I had a brain tumour. I had the scan in July, 11 months after my symptoms started, and didn’t get the results until that September. Thankfully, the scan was normal but it was such a stressful time. It was the worst year of my life. One GP told me I must have adult glue ear. When I told this to the consultant they laughed out loud.

I was very lucky that my work were very supportive. I was working in a hospital surrounded by doctors and consultants who were understanding. I didn’t have to take time off because I had a very supportive manager. The pandemic helped me in a way because things were much quieter than normal.

I now take 35mg of Amitriptyline every evening and it’s made a huge difference to me. It’s my cure. When everything finally felt still after so long it was the biggest relief of my life. I’m so glad it worked because I know how hard finding the right migraine medication can be. I’m part of a Facebook support group and everyone seems to be on their fifth tablet. I wasn’t expecting Amitriptyline to work. I did have to up my dose, I started on 25mg for about four months. I then had a relapse and we increased the dose to 35mg.

It’s now been two years and it’s still working well for me. I’ve also decreased my caffeine consumption. I can’t have more than one tea and one coffee in a day. I also gave up red wine.

I did have a bit of a relapse recently but I think it was from drinking fizzy drinks at work. As soon as I went back to drinking water I felt fine.

Why we need better awareness of vestibular migraine

I think rarer kinds of migraine like vestibular migraine need a lot more recognition. I do also get migraine headaches a few times a year and they can be debilitating. Vestibular migraine, however, just doesn’t seem to be recognised or taken seriously. Doctors just say it’s anxiety. Having vestibular migraine actually gave me severe anxiety as it made me feel like I was dying from a brain tumour.

I’m very lucky that I have a balance clinic a mile up the road and there are ENT specialists in all the hospitals near me in Manchester. I’ve read on online support groups about people who live in more remote areas who just can’t access the care. It’s been a total postcode lottery. I’m also very lucky that I was able to pay to see a consultant privately. It would have taken me a lot longer to see one on the NHS.

I think it’s also so important that workplaces are aware of migraine and understanding about it. I’m so thankful that my work were very supportive and it made a huge difference, but I know that many people aren’t so lucky.

My advice to others struggling with migraine

My advice to others in a similar position is that you’ve got to keep going. Do your own research and don’t stop, even though cycling through so many doctors and waiting can be frustrating. It’s important to get the right tests to rule out anything else so you can get the right treatment for you.

Learn more about vestibular migraine here. Read Jenny’s experience of living with vestibular migraine here.