Jeff's story

JeffIt started with some odd smells and tastes in 2012. It was so odd, I went to my GP who passed me straight onto a neurologist. Initially it looked like I had epilepsy, but then the headaches set in and things got really bad. At which point my neurologist switched from epilepsy to migraine with non-epileptic seizures.

To me, and pretty much everyone I knew, migraine was just a really bad headache! You feel bad for a few hours, get exhausted and go to sleep. But I soon learned about all the other types. How the pain is a side-effect of what’s really going on in your head.

I’ve learned most of my triggers. Fluorescent lighting and flickering/bright light (no more going to the cinema, unless I’m prepared for the consequences). But the one I can’t avoid, and the one that effects me most I found by accident.

I love to collect data, and one of my collections is local weather data from a cheap station in my garden. On a whim I compared some of my weather graphs to my headache diary, matching up my “bad” days. To my shock I found a match with falling pressure. Doesn’t matter if it’s hot and sunny, or cold and raining, outside, if the pressure is falling I’m in for a rough ride. And there’s nothing I can do about it.

My medication is my saviour and my curse. My day-to-day meds keep the persistent headache at bay (it was like having a permanent hangover), but has some side-effects. The triptans work for when it gets so bad that I can’t stand it any more, but they just knock me out and allow me to sleep through the worst of it.

So, as I’m at the mercy of the weather, I’ve become too erratic to work. I can only really predict how I’m going to be about three days in advance thanks to the Met-Office’s giant super computer. Fortunately, the company I work for has been amazing, and fought tooth-and-nail with its medical insurance to make sure I was covered. I couldn’t thank them enough for that.

My biggest hurdle going forwards though has been perception of my condition. From the outside I look normal! If there was a leg missing, or some other highly visible problem, there wouldn’t be an issue! But because it’s hidden away inside my skull, the only outward signs are my aversion to light, slurring and the left-side of my body and face don’t work properly. And I’m not in front of anyone when that happens except my closest friends and family.

Migraine can be debilitating as much as any other neurological problem. Whether right or wrong, I’ve tried to explain it as a posh form of epilepsy. Epilepsy is chaos and anarchy, where it’s every brain-cell for itself flashing on and off. Whereas migraine, by comparison, is an orderly mexican wave across the brain, with some equally horrible effects. The difference is that you’re awake for the migraine.

Fortunately I have the support of my family, friends and company. Even if they don’t understand, and still get it wrong when they think I’m going to be fine and I’m not. So many people don’t have that. And it’s a struggle, even when you do, because you’re still trapped in your head with the migraine when it happens.

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.