Who suffers from migraines?

Migraine in Germany
Numbers, facts, fates

Prejudices about migraines are persistent. They're reflected in sayings like, "Erwin's not at work today – he's got another migraine," or "Migraines are when women don't feel like having sex." All of this is nonsense. Because migraines are something completely different: recurring, severe headaches where jackhammers pound in your head for up to three days, where the pain behind the eyes and in the temples is almost unbearable, making your head feel like it's about to burst. Working is out of the question. You can't do anything anymore; children and partners are left to fend for themselves. Every tiny movement intensifies the pain to an unbearable degree. Everything you've planned, all your appointments, all your engagements, all for nothing – canceled.

Migraine attacks strike when you least expect them. Two, three, or even four times a month. Each attack lasts up to three days. Every sound hurts, light is blinding and painful – opening your eyelids is pure agony. Every smell is unbearable and intensely repulsive. Constant nausea and retching make the misery even more hellish. And it doesn't stop there – profuse vomiting leaves you completely exhausted. Migraine means three days of confinement to a darkened room, confined to bed and the toilet, with painkillers. Migraine means a lack of understanding from others and, for the sufferer, the fear of not being able to make up for lost time.

The immense debilitating effects of migraines are difficult for outsiders to comprehend. X-rays show no abnormalities, blood tests and other examination findings are normal. The doctors say everything is fine, they can't find anything wrong. Migraine – an illness without a bandage or cast to point to

National ailments with economic significance

Two out of three German adults (approximately 66 million) suffer from headaches at least occasionally. That's around 47 million people. Of these, almost 18 million are affected by migraines, another 25 million by tension-type headaches, and the remaining four million suffer from other forms such as cluster headaches and many others.

That's a considerable number: 18 million people suffer from migraines, most of them employed. If you take the average number of migraine attacks per month and the average duration of an attack, and assume that a migraine sufferer is unable to work or pursue meaningful leisure activities, then it follows that 900,000 human days are lost every day due to migraines.

• 900,000 human days. If we divide that number by seven and subtract the "unproductive" weekends, we're still left with almost 650,000 days lost as working time every day. Let's extrapolate that: 650,000 times 220 working days per year equals 143 million working days lost annually due to migraines.
• Let's continue this calculation a little further: Statisticians calculate the cost of lost work time for men at €29,191 per year, and for women at only €17,340. Averaging these figures gives us a value of €23,265. This is the cost of a year's lost work time for a man/woman. What does this mean for migraines?
• So we calculate: 23,265 euros divided by 220 working days equals 105.75 euros. We now multiply this result by 143 million: 105.75 euros times 143,000,000 days equals 15,122,250,000 euros – that's a good 15 billion euros.

The costs of lost work time due to migraines alone amount to approximately €15 billion per year. Added to this are around €27 million for hospital treatment (over 90,000 treatment days per year) and a significant portion of the roughly €500,000 spent annually in Germany on over-the-counter painkillers. Unfortunately, reliable figures for outpatient treatment by general practitioners are unavailable. However, this figure is certainly several billion euros per year as well. The confirmed costs of migraines alone thus amount to a good €16 billion. This corresponds to almost a third of the 1999 federal budget for transport, construction, and housing, as well as the defense budget, which together totaled around €50 billion. Or, to put it more vividly: €16 billion equates to 512,984 average net household incomes per year – enough to cover the living expenses of 512,984 households for an entire year. It can therefore be rightly claimed that migraine is a disease of high economic importance.

Who suffers from migraines?

How many people suffer from a disease within a specific timeframe, what characterizes those affected (e.g., age group, whether they smoke or not), and what social consequences the disease has – finding out all this and much more is the task of a medical discipline called epidemiology. However, this discipline has been greatly neglected in Germany.

It wasn't until 1993 that a representative German study on the prevalence of migraines and headache disorders was conducted. This study was based on data from a group of 5,000 representative adults and also included information on gender, age group, education level, town/city size, and region. All the facts mentioned below are taken from this study or—in the case of migraines in children—from representative studies in other countries. It should be noted upfront that education level, town/city size, and federal state do not play a role in the prevalence of migraines. However, age and gender do.

More and more children are suffering from migraines

According to a Scandinavian study from the 1960s, 2.5 percent of 7- to 9-year-old children suffer from migraines, rising to 4.6 percent in the 10- to 12-year-old age group and reaching 5.3 percent of 13- to 15-year-olds – roughly one in twenty. Although the study is now 40 years old, its findings have been largely confirmed by more recent research.

A Finnish study from 1974, repeated in 1992 with the same objective, is particularly thought-provoking. According to this study, in 1974 "only" 1.9 percent of 7-year-old boys and 2 percent of girls of the same age suffered from migraines. When the study was repeated 18 years later, these figures had risen to 6.3 percent of boys and 5 percent of girls. The incidence of all types of headaches, including migraines, increased even further, from 14.6 percent (boys and girls) in 1974 to 51.5 percent in 1992.

Even if the percentages are not directly applicable to the German context, they do indicate a tripling of migraine frequency and a 3.5-fold increase in headaches in general at this age. Furthermore, the study revealed an increase in the number of headache attacks per month.

Women are more frequently affected by migraines

As we saw in the last section, boys suffer from migraines more often than girls. This is exactly the opposite in adulthood. Over a lifetime (so-called lifetime prevalence), 27 percent of adults will experience migraines at some point. However, when looking at the sexes separately, 32 percent of women are affected, but only 22 percent of men. This corresponds to a ratio of 1.45 to 1. In other words, women are almost 50 percent more likely to suffer from migraines. Nevertheless, the figure of 22 percent of affected men proves that migraines are by no means exclusively a women's disease.

It becomes even more interesting when we look at the incidence of migraines calculated over a year. The underlying question is: "Did you have any migraine attacks in the past year?" – taking both gender and age into account: Here, we clearly see not only the different frequencies between women and men, but also the progression across different age groups. We see a peak in both women and men around the age of 30. After that, both curves gradually decline. In other words: The older we get, the less frequent migraines become.

What migraine patients think about their illness

Patients with many illnesses are exceptionally well-informed about their condition. Consider, for example, the various forms of coronary artery disease, such as angina pectoris or a heart attack. They know the correct terminology, have a clear understanding of how the disease develops (high blood pressure, arteriosclerosis), and are familiar with at least some treatment methods (e.g., bypass surgery, balloon angioplasty). This is not the case for patients with headache disorders. Although headaches in their various forms are among the most common and frequent ailments, surprisingly, there is a lack of knowledge about headache disorders.

Even the name migraine is problematic

The aforementioned representative survey of 5,000 Germans also investigated how those affected described their headaches. Only patients who actually suffered from migraines were interviewed.

Just under a third of these patients (27 percent) described their headaches as migraines. Six percent used other terms, such as stress headaches. Four percent thought their headaches were due to the weather. One percent believed they were psychologically based and referred to them, for example, as "nervous headaches.".

Besides this more cause-oriented group, another group of six percent of patients simply names their headaches by describing the subjective symptoms, e.g., “throating or tearing headache”.

A third group classifies migraines based on supposed organic changes. Accordingly, nine percent of migraine patients describe their headache as a "tension," "menstrual," "wear and tear," "circulatory," or "hormonal" headache.

Particularly concerning, however, is that 48 percent of those affected have no name whatsoever for their migraine headaches. These figures clearly demonstrate that there are no universally accepted concepts for naming and classifying headaches within the population. Headaches are simply endured. From the patients' perspective, there is no modern knowledge about the various headache disorders and, consequently, no specific therapeutic strategies that could be used for the different types of headaches.

Causes of migraine from the patient's perspective

Migraine sufferers have widely differing opinions on the origins of their headaches. One in two assumes that migraines have a physical cause, 26 percent believe there is no physical cause, while 24 percent have no specific opinion on how their headaches arise. However, those 50 percent who assume a physical cause cite a wide variety of possible causes (multiple answers possible):

• Musculoskeletal disorders: 75%
• Circulatory problems: 25%
• Intervertebral disc or spinal damage: 14%
• Hormonal causes: 12%
• Lifestyle (stress): 11%
• Jaw, throat, nose, ears, eyes: 11%
• Head injury, concussion: 6%
• Environmental factors: 5%
• Wear and tear: 3%
• Metabolic problems: 3%
• Allergy: 1%

This also demonstrates that there is a virtual "headache and migraine illiteracy" among the German population. Scientific findings on the causes of migraines have barely registered in the public's health knowledge.

Do you trust your doctor?

Trust in doctors regarding migraine sufferers is rather low: only slightly less than two-thirds of migraine patients seek medical advice at least once in their lives. A full 38 percent forgo it entirely. This is especially true for younger people.

The reasons for foregoing a doctor's consultation vary widely. One in two people believes that a doctor is not the right person to consult regarding migraines. These individuals feel it's pointless because the pain isn't constant and usually subsides on its own. Many sufferers also give doctors a poor review: "They don't care about my headaches anyway." They lack trust in doctors and don't believe they can competently treat their headaches. Another group of "doctor-shy" migraine sufferers believes they can manage their pain quite well themselves and therefore an examination isn't necessary. Some simply don't want to "waste" their time in the waiting room, especially since they assume the doctor probably can't help them anyway and painkillers are readily available at the pharmacy.

The general consensus, however, is quite clear and should give the medical profession pause for thought. To put it somewhat bluntly: What should one make of the fact that a good third of drivers would rather try to repair their cars themselves because they lack trust in repair shops?

It is evident that little is being done by the medical community to foster trust in her expertise regarding migraines and headaches. This is certainly due in part to the minimal time some doctors dedicate to their patients and their headaches: a reliable diagnosis or an appropriate treatment plan cannot be established within the scope of a "three-minute consultation." Such behavior naturally leads to patient disappointment. And it is obvious that such negative experiences are shared with other sufferers and influence their behavior.

Information sources for self-treatment

It is consistent with what has just been said that 15 percent of migraine sufferers have acquired their knowledge of pain management from friends and acquaintances. Only seven percent follow a doctor's advice when self-treating – the same number as those who treat themselves according to television, magazine, or radio advertisements.

At least 18 percent follow the recommendations of a pharmacist. Most, however, treat themselves as recommended in the media or as they learned within their families – with advice often passed down through generations.

Self-treatment with medication

The vast majority of migraine sufferers are so severely debilitated by their condition that they inevitably begin some form of treatment. The most obvious solution, of course, is to go to the pharmacy and buy one of the over-the-counter painkillers. However, self-medication with medication shows that two out of three patients take too low a dose. Only about a third of those affected take two tablets (1000 milligrams of acetylsalicylic acid or paracetamol) or more, which is within the range of an effective dose. The ratio is somewhat better with prescription painkillers: only a third of patients take too low a dose.

From whom do patients expect help?

Of those who seek medical help at all, the vast majority of patients consult their family doctor or general practitioner. Neurologists, internists, and orthopedists are almost equally ranked second in terms of physicians consulted. Following closely behind are alternative practitioners, psychiatrists and psychologists, ophthalmologists, homeopaths, gynecologists, ear, nose, and throat specialists, dermatologists, acupuncturists, and chiropractors.

It should be obvious that with such a diverse range of professional groups involved, the same level of expertise regarding headaches cannot be expected across the board. Consequently, diagnoses vary widely. The aforementioned study of 5,000 people yielded a shocking result: Of those patients who met all the criteria for migraine, only 26 percent were actually told they suffered from migraine. In short, this means that three out of four patients go home with the wrong diagnosis or no diagnosis at all.

To return once more to the issue of trust in doctors: In light of these figures, is it any wonder that migraine and headache patients feel they are not taken seriously and prefer to resort to self-help and explanations passed down through folklore?