Tony's story

Photo of Tony

I used to just get the pain, a blinding pain that felt as if it was going to split my skull in two. The first time I had it, I remember turning round to see something behind me. I felt this searing pain, but when I looked forwards it was okay. But the pain gradually filled my head no matter which direction I looked. It was my first migraine of many. I went back and forwards to doctors. The GP sent me to the optician and the optician said that my eyesight was perfect. ‘Maybe it’s too good’ was the confusing diagnosis.

When I did get a migraine, I couldn’t do anything. Lying in the dark, if I got uncomfortable, even turning over from one side to the other was an invitation for another onslaught. It was almost as if I could hear the rhythmic pulsing of the blood through my brain, like a squatter in my head was beating a Lambeg drum. It also felt as if I could physically feel the lump in the back of my head where the blood seemed to get blocked and struggle to get through. I don’t know if there’s any science to suggest this happens but it felt like that to me.

Once in 1987 and again in 1997 I had the ‘aura’. I didn’t realise this was a precursor to the head pain, a warning sign that would give me time to wallop down some pills, eat food, drink water and if possible lie in a dark room with ice on my head.

The first time I was at a Chelsea game at Stamford Bridge, having just moved to London and doing a bit of a tour of the city’s football grounds. My vision was disappearing, disappearing, disappearing until the only thing I could see was Pat Nevin preparing to take a corner. Trying not to panic, I thought if I concentrated on him I’d be alright and things would somehow get back to normal. Then, instinctively I tried to follow the flight of the ball. I came round sitting on the terracing with my head between my legs, apparently having keeled over. The Chelsea fans were as sympathetic as you’d expect!

The next time in 1997 I was in work and the words began disappearing off my computer screen. I was sent to the occupational health nurse. She suspected a migraine and sent me to my GP who agreed with her. Jokingly he said, ‘Whatever you do, don’t get on a flight.’ I had made plans to go to Brussels that night and as I’d only had the aura and not the subsequent pain, I weighed up the options and thought, what’s the worst that could happen?

Tip. When your doctor says don’t get on a plane, then don’t get on a plane.

I rarely get the pain now, but recently I’ve been going through a lot of aura attacks. It starts with noticing words missing on a screen or a page or, last week, one of the hockey players in the Olympics suddenly had only one leg. The area of blindness increases at pace, a semi-circle kaleidoscope of light fractals gradually obliterating your vision. When you talk to someone it’s as if half their face is missing, like Gus Fring in Breaking Bad.

Six months ago, I had six of these in five days. Luckily they were all at home so I could deal with them without any fuss. I have had about eight in the last ten days now, and three of them have come at work. This has meant taking 20 minutes to half an hour to go lie in the dark until the aura passes, combined with some strong medication, water, food.

Luckily I’ve been able to go back to work and finish my shift. When I previously had the pain rather than the aura I simply wouldn’t be able to do that. It was bed and darkness for a day, two days, three days and more.

Only once I’ve thrown up with a migraine.

I have food triggers, mainly cheese and chocolate. I haven’t had cheese for about 13 years, apart from an odd occasion when there’s been some in a ready meal that I missed in the ingredients. Recently I’ve wondered if it’s the pickle I’ve put on my sandwiches, chorizo or green olives. But even as I’ve eliminated all of these things, they’re still happening.

I think they’re probably stress migraines at the moment, possibly brought on by the sporadic nature of my work as a freelancer and worrying about continuing to get enough to keep me going. Ironically, the fact that it’s happening at work gives me further stress that people might stop booking me for shifts if I have to take frequent time-outs to go lie down.

At the moment, maybe because I had a migraine last night, or maybe because I need a new prescription for my glasses, as I look at my computer monitor I don’t really see a plain white background. I see shadows of things I looked at a second ago, like you would if you looked at a bright object (e.g. a lightbulb) and then blinked elsewhere and you would still see the brightness of the lightbulb in your vision. I don’t know if this is always there, or it’s just more pronounced because I’m having regular attacks at the moment.

Hopefully this will pass, the way it did six months ago, as I cut out more foodstuffs and try to deal with the build-up of stress that may be causing it. The problem is not knowing what’s behind it.

The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.