Susie Maguire

The Mystery Illness arrived in my late teens, during a family holiday in a remote Highland glen. A doctor visited, expressed concern, but was reluctant to send me 75 miles by ambulance to Raigmore Hospital in the middle of the night. Back at home five days later there was a recurrence, so I was carted off for a lumbar puncture which, in the absence of the suspected viral meningitis, was deemed investigation enough.

Throughout my twenties, however, the mystery ailment appeared every few months, masquerading as random viral illnesses; once, it actually turned out to be viral meningitis, and from then on my symptoms seemed like echoes. By my mid-thirties, the rate upped to about once a month but with no clear pattern. I was variously diagnosed as having ME or chronic fatigue syndrome (both with a solid lack of conviction), depression (by this time I was certainly depressed), hyperventilation (sighing and shallow breathing, hmm, perhaps owing to pain and exasperation), or some other psychosomatic affliction that could only be alleviated by - these were the suggested options - brisk exercise, a high-fibre diet or Prozac.

None of those worked. I grew used to being told there was nothing wrong with me, grew used to feeling awful. I felt like a freak, unable to explain to anyone what was happening.

By my forties, these mysterious episodes caused me to dread work deadlines. The frequency escalated to four or five attacks a month and the pain sometimes made me vomit. Depression and chronic pain become inseparable. More referrals, X-rays and blood tests ensued, all negative or inconclusive. Thyroid fine, hormones fine, nothing wrong with me. I stopped accepting invitations, tried acupuncture, herbalism, osteopathy, anything and everything. I felt too defeated to keep asking GPs about it.

One day, in quiet desperation, waiting for codeine to kick in, I Googled "headaches" and "experts"; up came a link to info on NHS Headache Clinics, including one at the Western General Hospital in Edinburgh. The zillion-watt light bulb moment was swiftly followed by questions like "Why have I never heard of that before? Why have I been sent everywhere but there?"

The next available appointment at my GP surgery was with a locum; no arguments or attempts to persuade, I simply asked her to refer me, and she did. Around eight months later (there are a million headaches in the city) I was seen by a consultant. I related my history and the symptoms: hypersensitivity to light, noise and smell; nausea; a dragging fatigue; the sensation of compression, as if wearing clothes one size too small; and sneakily, gradually, the emergence of more specifically-located pain in my neck and all over my skull which, if left long enough, pulsed and stabbed at my right temple. If left even longer, the pain induced vomiting, for hours. "Like sinusitis plus the worst hangover in the world with a bit of hay fever thrown in, emerging over a period of 12 to 24 hours, usually," was my capsule description.

The consultant listened. When he said "Well, yes, that sounds like migraine to me", I tried not to sob all over his white coat. I went home equipped with a prescription for a triptan drug, and next time the pulsing shifted into one-sided agony, I took a tablet, and felt the pain slowly ebb. Overnight, the world stopped looking so irredeemably grey.

It took a while to get the right drugs and dosages, and to become adept at catching the monstrous creature before it took me over the edge - there's a narrow window for oral medication, after which the digestive system refuses to absorb the drugs, and you're stuck with a few horrible hours until the blood vessels reset themselves. For a couple of years the attack rate remained high. I put exclamation marks in my diary on the rare days when I felt well and able to think and work. Recently, treatment for hypertension has begun to decrease the frequency of the migraines. Fingers crossed.

Of course, the big question is: what's causing the migraines? Everyone has a theory. Yes, I can eat wheat and oranges and chocolate and cheese and shellfish. No, I don't drink alcohol or coffee. Yes, I've drunk enough water today, and taken exercise. No, I've tried homeopathy, thanks. Yes I've had my eyes tested. No, I don't think it has anything to do with my amalgam fillings. Yes, I have heard that too many painkillers can make headaches worse. No, I've tried herbal concoctions, and talking cures. Thanks, but I really don't need to hear another lay-person's opinion of what's "wrong" with my metabolism or my psyche, or how standing on my head or drinking goat's milk or avoiding carbohydrates could be the miraculous solution.

From this end of that long journey, I'm still quite shocked at how much - and to what little effect - I was shunted around the health system. True, I suspect now that my set of symptoms are atypical, but I did have several pretty classic ones which I described in full to numerous professionals, and nobody ever used the term migraine, or suggested trying a proven migraine drug to find out if it worked. That long struggle towards diagnosis and treatment has left me with little trust and many questions, although - now that the condition is manageable - I find I'm loath to spend time thinking about it. I'd rather use the days when I do feel energetic and focused to write.

Coping at home is bearable, but if a migraine arrives when I'm out I find myself longing for the world to be a little better organised in favour of my tender head. I dream of pharmacies that offer small dark rooms to lie down in, ear plugs against clatter and chatter, and Phillipe Starck-designed basins for when the nausea reaches critical. A kinder world where the NHS 24 helpline doesn't play Vivaldi "on hold" at a volume which pounds delicate eardrums, where there's a switchboard option for those whose logic and patience are temporarily compromised. Better still, I'd like my neighbours to wear slippers, their hi-fi systems to herniate, traffic and scaffolders to disperse quietly at the push of a button. I'd really like to whack a few doctors over the head with a rubber hammer, so they can learn from personal experience. Most of all, though, I'd like a dozen cool black T-shirts bearing the slogan "SSSHH - MIGRAINE IN PROGRESS. NO, IT'S NOT JUST A HEADACHE".

No,it's not just a headache