Jenny’s experience of vestibular migraine

What vestibular migraine feels like

I started getting vestibular migraine attacks almost four years ago when I was in my late 60s. When I have an attack, I experience extreme dizziness that can last for days. I find myself staggering around clinging to furniture and struggle to get out of bed during the first couple of days of an attack. I occasionally get a mild headache during a migraine attack, but not always. Interestingly, I did used to get migraine attacks when I was a child.

A lot of people have never even heard of vestibular migraine, so people struggling with dizziness often aren’t thought of as having migraine at all. I worry that some people might go undiagnosed or untreated for years because of this. Many people think of migraine attacks as headaches, but there’s so many other debilitating symptoms and not everyone gets a headache.

The impact on my life

Before I was prescribed effective medication, the impact of my migraine on my life was enormous. I had regular periods of migraine which lasted around a week.

During the first few days of an attack I was hardly able to get out of bed and, since I live alone, this meant I couldn’t get food or look after myself. Even now I get occasional bouts when my life goes on hold. If I get a really bad attack, I feel terrible at the start and then it gradually improves over anything up to 10 days.

Finding the right treatment

I didn’t have a good experience with my GP at first – they just tried me on one drug after another that made no difference at all. They prescribed me antidepressants but these affected my head and I couldn’t focus, and all they wanted to do was try me on a higher dose. Fortunately, I had a better experience with another doctor at a specialist ear, nose and throat centre in Brighton and finally found medication that helps me manage my symptoms.

I take a preventive called pizotifen everyday which has made a huge difference. While it hasn’t completely stopped my bouts of migraine attacks, it has made them less frequent and less severe, although weight gain is a downside of it. I also take sumatriptan when I feel an attack coming on, but it doesn’t always work which can be very frustrating.

While living with vestibular migraine is very challenging, something I would say to others is that finding the right medication can make a big difference – so don’t give up. Finding an effective preventive has helped me a great deal.