I still remember the day of my first attack. I remember it clearly. It was the very day before my first school-leaving finals exam (Abitur). In the morning, I was still prepping with my books, in the afternoon I was on the sofa in severe pain. My head felt like it was about to explode. I felt incredibly sick. When the headaches were at their peak, I threw up.

Since then, the migraine has been with me constantly. There has not been a year, rarely a month, without attacks. On many days, I could merely hide away in a darkened room. Sometimes it feels as if my brain is expanding. Sometimes it feels as if someone is drilling into my temples – always into the right one. But the migraine can also sneak up on you. Creeping up from the back of my neck onto my forehead. At first, it only makes itself known as a tug near the temple. The tug turns into pressure, the pressure becomes throbbing. The initially rather mild headache turns into a full-grown migraine attack.

Developing a migraine is genetic

I know I’m not the only one. I am not alone. Ten to 15 per cent of all Germans have migraines. With many, myself included, they occur for the first time in young adulthood, at the age between 20 and 30. Most people, myself included, suffer from episodic migraines. That means that ‘migraine days’ are succeeded by a pain-free phase. In my case, the pain-free phase can last for seven days, sometimes even for a fortnight. Days on which I feel fine and don’t have any headache at all. Then it almost feels as if the ailment is not a part of me after all. Doctors call it a chronic migraine when there are more than 15 pain-days a month.

The predisposition to develop a migraine is genetic, it is inherited. ‘You are already born with a migraine brain’, says Professor Dagny Holle-Lee, head of the West German Headache Centre at University Hospital Essen in the Ruhr Valley. This ‘migraine brain’ reacts particularly sensitively to external stimuli. It has difficulties filtering and blocking them out, it internalises everything. ‘Migraine patients are the people who notice and hear everything: every little click or knock. They sense the construction site near their front door just as much as a dripping tap’, Holle-Lee explains.

Migraine is a part of me – whether I like it or not. But I can tame it and put it in its place. Sometimes that works better, sometimes worse: That’s standard.

But it is not only with such annoying stimuli. It also happens at a friend’s birthday party in a café, the buzz and the babble of voices mixed with loud music and snippets of the various conversations. In such moments, I can almost feel how my brain is trying to ingest all these impressions at once. I can feel the strain, the overload. Then I am overcome by a heavy fatigue and want to fall asleep immediately. This is usually the harbinger of the next attack.

Both the strain of processing all these stimuli and the enhanced brain response to them are real. In addition, the brain receives more pain signals than under normal circumstances. The cerebral vessels subsequently expand. ‘There is a slight inflammation of the cerebral membrane around the cerebral vessels’, Dr Robert Fleischmann told me, a senior physician at the Clinic and Polyclinic for Neurology at Greifswald University Medicine. Dagny Holle-Lee compares the situation to a ‘sunburn on the brain’.

What makes migraine different from headaches

The inflammatory reaction also separates migraines from tension-type headaches. During a migraine attack, an increased amount of a protein called ‘calcitonin gene-related peptide’ (CGRP) is released. The knowledge about CGRP is by now successfully used in migraine attack prevention treatment.

I used to ask myself why my brain is a ‘migraine brain’. That is a question that no one has answered satisfactorily yet. ‘Migraines develop through processes that we still don’t fully understand’, Holle-Lee concedes. And who says that knowing the exact cause of my attacks would simply make them go away? I don’t think it’s likely. For a long time, I was ashamed of my migraine attacks. I rarely talked about them. It is not that easy to say: ‘I have migraines.’ To the people near me, I may just be a little quieter and paler than usual. But no one can fully understand that – during an attack – I would like to rip my head off or swap my brain with someone else’s. I know all the sceptical looks: ‘Is she just faking it? Surely, it can’t be that bad? Yet another headache? She is certainly quite delicate. Not at all resilient.’

Quite the opposite: Many migraine sufferers are actually quite tough. I might put myself under too much pressure in some phases, want to get too much done. Until my migraine brain can no longer keep up. ‘Studies indicate that increased anxiety, combined with – for example – a catastrophising style of thinking, increases the risk of the migraine affliction becoming chronic’, says Clarissa Verschoof, a psychotherapist at the Migraine and Headache Clinic Königstein. But does anxiety cause the migraine, or vice versa? If you have had to cancel appointments because of an attack, missed family events or stayed in bed with a headache on holiday, you may be more prone to anxiety. The migraine can always throw a spanner in the works. I try not to let it determine my planning anymore.

Living with migraine

Because what I have understood is this: It is not the migraine that will adapt to my life. My everyday life has to adapt to the migraine. Above all, this means regularity and structure in my everyday life. My list of potential triggers fills more than a page. But I don’t spend so much energy and attention on them anymore more. ‘Most triggers get overestimated’, says Holle-Lee. ‘For example, a severe craving for chocolate doesn’t trigger the migraine at all: It is already a part of the attack. The same goes for most of the so-called triggers.’

One thing is certain, however: The female cycle, menstruation, can be aligned with migraine attacks. That is the reason why more women are affected than men. The weather can also release an attack, as well as an irregular sleeping rhythm - which is why many patients suffer from attacks especially at weekends. It is a fine line: Don’t sleep too little, but don’t sleep too long, either. I also know that I have to eat regularly, especially eat enough breakfast. I know: Don’t skip a meal, and most certainly don’t leave the house on an empty stomach.

Drugs are never the exclusive solution. Always try out all paths recommended. Exercise regularly, practise relaxation techniques.

As it was ‘only a headache’, I sought professional medical help very late. I regret that today. I am glad and blessed to have found a neurologist who specialises in migraines and thus understands me. With her help, I found painkillers – triptans – which do me more good than the ibuprofen I had been taking for years. I practise yoga regularly and try to include relaxation exercises in my daily routine. Lately, I have managed to go for regular runs. I don’t really enjoy it – but it helps. In good months, I have just three migraine days. Or I even enjoy a longer phase without headaches.

Acceptance

I only realised at a very late stage what helps me the most: acceptance. I no longer ask myself constantly why I – of all people – have these migraines. Anger and defiance don’t get me any more pain-free days. The migraine belongs to me. It is my companion, whether I like it or not. But I can tame it and put it in its place. Sometimes better, sometimes worse - that is also standard. I probably will never get rid of it completely. Migraines cannot be cured. The path to acceptance is also a grieving process, according to Clarissa Verschoof: ‘Accepting that you have to organise your life a little differently than you would have wished for. But permitting emotions like anger or grief, too.’

I think that is a worthwhile process. Nowadays, I try to see a migraine attack as a warning signal from my brain. As a prompt to take better care of myself again. I have become better at reading these signals by now. A sudden tiredness, for example, is a sign that my brain is currently getting too much input. If that happens, I sometimes even manage to withdraw, to rest and to recharge my batteries. I can fix the dripping tap. Leave the noisy party earlier. And maybe in doing so, I can even avert the next attack.

It's been a long time since my first attack. Almost 25 years. I have lived with my migraine for more than half my life. It has changed over the years. The really bad attacks that make me want to rip my head off have become less frequent. And I would not like to trade my migraine brain anymore – by now, I know it far too well for that.

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