For over 17 years now, I have lived with a rare type of migraine condition that impacts much of my daily life. My situation is unusual because I do not get headaches, and I do not get attacks of symptoms, but they are ever-present on a kind of spectrum.

The symptoms I do get can be very difficult to deal with; dizziness, a feeling of swaying or unsteadiness and feeling light-headed. I have permanent visual aura, bright flashes in my line of sight that never go away. It’s become so normal for me to have the aura I’ve almost become used to it and forget that it’s there. I suppose you do have to adapt.

‘At the mention of migraine, even healthcare workers’ minds immediately seem to go to ‘head pain’ and ‘pain management’’

It’s odd living my life when my reality is different to everyone else’s. If I’m sitting at a table opposite you it might look like I’m perfectly still but I actually feel like I’m rocking side to side. Or If I’m walking up the street, I feel like I’m going to bump into somebody walking the other way.

Having symptoms that are different from what people would usually connect with migraine has meant my healthcare and treatment journey has been difficult at times. At the mention of migraine, even healthcare workers’ minds immediately seem to go to ‘head pain’ and ‘pain management’, and I have to explain that for me that’s not how the condition manifests.

The route to diagnosis was a lengthy process. Initially I was diagnosed with basilar migraine (known as migraine with brainstem aura) but I still didn’t get the right treatment and support, so I just muddled through. In recent years, things got progressively worse. The waiting list for the NHS was so long, it was demoralising. I ended up paying to see a private neurologist – they were fantastic and seemed to really understand. They updated my diagnosis to ‘a neurological condition migrainous in nature’. They said it’s very rare, but they will try to find the right treatment. The consultant did mention other treatments but said that my lack of head pain means that I wouldn’t be eligible to try them.

‘I am grateful not to experience head pain, but it can be very isolating’

I look at having migraine without head pain in two ways – firstly I am grateful not to experience head pain, I imagine it must be awful to be in pain like that, and I’m blessed that I’m not. But then the second way I look at it, is that it can be very isolating. Migraine is not a well understood condition anyway, but to have symptoms that aren’t the ones commonly associated, means I feel even less understood. I’ve never met anyone else with symptoms like mine, and that is why I wanted to share my story.

In terms of the impact on my life, my symptoms vary, and so does their effect on my life – at best things are kind of OK, at worst I can’t do the things that I enjoy. This condition came on when I was in my thirties and I used to play football regularly, something like that would just be impossible now.

‘It’s easier for people to grasp needing support for a physical condition or injury’

I definitely would categorise my condition as a disability as it does have a substantial effect on my day-to-day life. Any hidden disability is harder to explain for a start, and then trying to explain my particular condition is harder again. Sometimes I’ve just given up trying to explain at all. I actually use a walking stick at the moment, partly because I’m waiting for a knee replacement, but also because of my migraine condition due to balance issues. It’s hard for me to walk around without the stick. I use it more for the migraine condition really. At some point I’ll still be using my stick after my knee replacement, and people will just assume my knee is still bad. I probably just will agree, rather than trying to get into an explanation. It’s just easier for people to grasp needing support for a physical condition or injury. I’ve tried to explain to friends and family at times and can see it’s difficult for them to understand.

Psychologically, it’s very anxiety-inducing. There is always an underlying thought of ‘what if symptoms get worse when I’m out by myself’. I would tend to avoid new and unfamiliar places to an extent because of it.

I work for a mental health charity, so I have an understanding of the connection between mental and physical health. I also know men don’t report mental health issues as much. In mental health, there is a lot of talk of traditional perceptions of masculinity and stigma, and I think there might be similar reluctance for men to talk about migraine. I imagine a lot of men feel they’ll be seen as complaining about ‘just a headache’. Maybe men are just more reluctant to raise health concerns generally.

The most recent preventive I have been put on seems to have helped, and things have settled to a degree. I also found support and information through The Migraine Trust, via their helpline and their website. I think it is important to reach out for support and also to speak up about our experiences. Even just sharing my experience here has helped a little for me, and I hope for anyone else reading it who has gone through something similar.