Travelling Migraine Diary

As a longtime sufferer, and member of the Migraine Trust, I was asked if I would participate in their Travelling Migraine Diary. They sent the diary around to members and we wrote a bit about our own migraine experiences. Mine is below. This is the flickr link to the complete published diary.

I think this travelling diary is a wonderful idea, and I’m very pleased to be part of it. Best wishes to every sufferer. My own migraine journey started when I was about six. It was a very scary episode, and I was diagnosed at the time by the GP who had come out to see this screaming vomiting child. I have had them ever since, over forty years, sometimes once a month, sometimes twice a day.

My triggers are not straightforward, but I think a drop in blood sugar is one. However, even when I’m eating well and controlling that, I still get migraines. Sometimes a strong smell, like Tarmac, will set one off. Mostly I’m not sure.

I’m lucky in that I always have an aura first, so it warns me that a migraine is coming. I get a series of visual disturbances, the pulsing, shining, colourful, undulating, moving, growing zigzag, the blind spots, tunnel vision, colours, blobs, or sometimes something that I term ’slippage’ in which my vision just seems to ’slip’. It’s really hard to describe, but it’s a bit like a funfair effect – everything is just slightly distorted and wrong. Increasingly, as I get older, this happens and sometimes my vision is odd all day, but the migraine doesn’t develop. Once my aura – a silver blob – lasted a week, until the next migraine sort of ’overwrote’ it. Also, I’ve started to feel ’odd’ for about a day beforehand. Just feel weird, odd, peculiar, then the next day, BANG, big migraine.

So when I get the first inkling of an aura, I need to take my medication, the only thing that has ever worked, pink Migraleve. Ordinary paracetamol/codeine doesn’t do it, and for all I know it could be a placebo effect, but when I have taken other migraine meds, they haven’t stopped it, and I get a full-blown whole-hog migraine, which puts me out of action for 3-4 days.

So I have to take my Migraleve within 5-10 seconds or it’s too late – I always have it with me – then I can relax a bit. The aura comes on with different intensities, so I know sometimes it will go in a minute or two, and sometimes it will be bigger and take longer to go, and will leave me with headache and ’brain holes’ when I feel like bits of my brain are inaccessible. It seems like a stroke might be.

After the visuals, I get travelling numbness. One hand; side of the face; other hand; lips; back of the head. Then I lose the ability to talk. I can think ok, know what I want to say, but it comes out all garbled. That’s really quite unpleasant and stroke-like. After that goes – all this takes about half an hour to an hour – I go back to normal, apart from feeling like my brain is a walnut rattling in my skull, and not being able to think straight. I’m not safe to drive either really or do dangerous things!

If I get a full blown attack, the head pain is excruciating. It makes you want to jump out of the window just to stop it. The only way to deal with it is to sleep it away. Two days at least, then a further two of creeping about in the dark with no loud noise… And if it gets to the vomiting stage, that’s horrendous because of the force transmitted to your pounding head. bang bang bang. But on the whole I don’t get to that point if I take the drugs quickly.

I have a friend who only ever gets migraine when she is asleep, so she has no way to medicate. She wakes up when the pain wakes her. That’s really awful. Mostly people who don’t get them often don’t understand. They think its just a headache. I get just headaches too, and while they aren’t pleasant, and can sometimes be debilitating, I never had one that bad that I wanted to die to get away from it. And people really don’t understand when I say I can’t see, the aura is here, I have to stop. I can’t see! I think the visual aura can be very beautiful, and I keep trying to capture it in my art, but don’t get the intensity.

Sometimes when I have taken the pills and the aura is there – the zigzag – I try to have a good look, and get at least something interesting from the experience!