Who suffers from migraines?

Migraines in Germany
Numbers, facts, fate

Prejudices about migraines persist. They are reflected in sayings like “Erwin is not at work today – his migraine has taken hold again” or “Migraines are when women don’t feel like having sex”. All of this is nonsense. Because migraines are something completely different: recurring, severe headache attacks in which jackhammers pound in the head for up to three days, in which the pain behind the eyes and in the temple is almost unbearable, causing the head to burst. There is no thought of working. Nothing works anymore, children and partners are left to their own devices. Every movement, no matter how small, increases the pain to an unbearable level. Everything you had planned, all plans, all appointments, all appointments, all for nothing - canceled.

The migraine attacks come when you don't need them at all. Twice, three times or even four times a month. The migraine attacks last up to three days each. Every sound hurts, light blinds and hurts - opening your eyelids is a real torture. Every smell is unbearable and intensely disgusting. Constant nausea and the urge to retch make the misery even more hellish. It doesn't stop there - bursts of vomiting take away the last of your strength. Migraines mean three days of house arrest in a darkened room, tied to bed and toilet, painkillers. Migraine means a lack of understanding from others and, for those affected, the fear of not being able to make up for the time.

The immense disability caused by migraines is difficult for outsiders to understand. There are no abnormalities in the x-ray, blood values ​​and other examination findings are normal. The doctors say everything is fine, they can't find anything. Migraine – a condition with no bandage or cast to point to

Public suffering with economic significance

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

That's a significant number: 18 million migraine sufferers, most of whom are employed. If you take the average of the number of migraine attacks per month and the average duration of an attack and assume that a migraine sufferer is unable to work or engage in a meaningful leisure activity, this results in 900,000 human days lost per day due to migraines get lost.

• 900,000 human days. If we divide the number by seven and deduct the “unproductive” weekends, there are still almost 650,000 days that are lost as working time every day. Let's extrapolate that: 650,000 times 220 working days per year equals 143 million working days lost every year due to migraines.
• Let's continue the calculation example a little further: Statisticians calculate 29,191 euros per year of lost work for men, and only 17,340 euros for a woman. If we now average the whole thing, we get a value of 23,265 euros. This is the price for a year of loss of work for a man/woman. What does this mean for migraines?
• So we calculate: 23,265 euros over 220 working days equals 105.75 euros. We now multiply the result by 143 million: 105.75 euros times 143,000,000 days equals 15,122,250,000 euros - a good 15 billion euros.

The costs of lost work due to migraines alone amount to around 15 billion euros per year. In addition, there are around 27 million euros for treatment in hospitals (a good 90,000 treatment days per year) as well as a large part of the around 500,000 euros annually that are spent on over-the-counter painkillers in Germany. Unfortunately, there are no reliable figures for outpatient treatment by practicing physicians. However, several billion euros will certainly be incurred here every year. The guaranteed costs of migraines alone are a good 16 billion euros. This corresponds to almost a third of the size of the 1999 federal budget for transport, construction and housing as well as the defense budget, for which a total of around 50 billion euros was budgeted. Or, to put it more clearly: 16 billion euros corresponds to 512,984 average net household income per year - 512,984 households could make ends meet for a whole year with the money. It is therefore fair to say that migraine is a disease of great economic importance.

Who suffers from migraines?

How many people suffer from an illness within a certain period of time, what characterizes those affected (e.g. age group, smoker or not) and what social consequences the illness has - finding out all this and much more is the responsibility of a medical discipline called epidemiology calls. But in Germany this discipline has been very neglected.

It was not until 1993 that a representative German study on the occurrence of migraines and headache disorders was carried out. This study is based on information from a group of 5,000 representatively selected adults and also includes data on gender, age group, school education, town size and region. All the facts mentioned below come from this study or - for example in the case of migraines in children - from representative studies from other countries. This much can be revealed in advance: school education, size of place of residence and federal state do not play a role in the occurrence of migraines. But 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 are affected by migraines, 4.6 percent of those aged 10 to 12 and 5.3 percent of 13 to 15-year-olds - roughly every twentieth child. Even though the study was conducted 40 years ago, its results have been largely confirmed by more recent studies.

A Finnish study from 1974, which was repeated with the same aim in 1992, is particularly worth considering. According to this, in 1974 “only” 1.9 percent of 7-year-old boys and 2 percent of girls of the same age suffered from migraines. When repeated 18 years later, the figure was already 6.3 percent of boys and 5 percent of girls. The occurrence of all types of headaches, including migraines, even increased from 14.6 percent (boys and girls) in 1974 to 51.5 percent in 1992.

Even if the percentages may not be exactly transferable to German conditions, they do indicate a threefold increase in the frequency of migraines or an increase of a factor of 3.5 in headaches in general at this age. The study also showed that the number of headache attacks per month had increased.

Women are more likely to suffer from migraines

As we saw in the last section, boys suffer from migraines more often than girls. This is exactly the opposite in adulthood. Calculated over their entire lives (so-called lifetime prevalence), 27 percent of adults will suffer from migraines at some point. However, if you look at the genders 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 number of 22 percent of men affected proves that migraines are by no means just a women's disease.

But it also becomes interesting if we look at the occurrence of migraines over a year. The underlying question is: “Have you had migraine attacks in the past year?” – whereby we now take both gender and age into account: You can clearly see not only the different frequency in women and men, but also the progression through age. We see a peak in both women and men around the age of 30. Afterwards both curves slope down and become flatter. In other words, the older we get, the less common migraines become.

What migraine sufferers think about their illness

For many illnesses, patients know exceptionally well about their illness. Just take the different forms of coronary artery disease, such as angina or heart attack. They know the correct names, have a clear idea of ​​how the disease occurs (high blood pressure, arteriosclerosis) and know at least some treatment procedures (e.g. bypass surgery, balloon catheter). Not so for patients with headache disorders. Although headaches in their various facets are one of the most common and common illnesses, there is a surprising lack of knowledge about headache disorders.

Even the name migraine is flawed

The already mentioned representative survey of 5,000 Germans also determined how those affected describe their headaches themselves. Only patients who actually suffered from migraines were surveyed.

Only just under a third of these patients (27 percent) described the headache as a migraine. Six percent used others such as stress headaches. Four percent said their headaches were due to the weather. One percent said they were psychologically caused and spoke, for example, of “nerve-related headaches”.

In addition to this more causally oriented group, another group of six percent of patients name their headaches simply by describing the subjective symptoms, for example “throbbing or tearing headaches”.

A third group classifies migraines on the basis of supposed organic changes. Accordingly, nine percent of migraine patients describe their headache as a “tension-related,” “menstrual,” “wear and tear,” “circulatory” or “hormonal headache.”

What is particularly serious, however, is that 48 percent of those affected have no term at all for their migraine headache. These figures make it clear that there are no generally accepted concepts among the population for naming and classifying headaches. Headaches are simply tolerated. From the patient's perspective, there is no modern knowledge about the various headache disorders and therefore no specific therapeutic strategies that could be used for the various headaches.

Causes of migraines from the patient's perspective

There are also very different opinions among migraine sufferers about the cause of their own headaches. One in two people assume that there is a physical cause of migraines, 26 percent assume that there is no physical cause, while 24 percent have no specific opinion at all about how their headaches arise. But those 50 percent who assume a physical cause name a wide variety of possible causes (multiple answers possible):

• Musculoskeletal system disease: 75%
• Circulatory problems: 25%
• Intervertebral disc or spine damage: 14%
• Hormonal causes: 12%
• Lifestyle (stress): 11%
• Jaws, neck, noses, ears, eyes: 11%
• Head injury, concussion: 6%
• Environmental: 5%
• Wear: 3%
• Metabolic problems: 3%
• Allergy: 1%

It can also be seen here that in Germany there is a kind of “headache and migraine illiteracy” among the population. Scientific findings on the development of migraines have hardly been reflected in the public's health knowledge.

Trust in the doctor?

Trust in the medical profession regarding migraine disease is rather poor: only about two thirds of migraine patients seek advice from a doctor at least once in their lifetime. A full 38 percent forego it altogether. This is especially true for younger people.

The reasons for not seeking a medical consultation are very different. One in two people think that the doctor is not the right person to contact when it comes to migraines. These people are of the opinion that it doesn't make sense because the pain doesn't occur all the time and goes away on its own anyway. However, many of those affected also give the doctors a bad report: “They don’t care about my headaches anyway.” They don't trust the doctor and don't trust him to competently treat their headaches. Another group of “doctor-shy” migraine sufferers believe that they can treat their pain quite well themselves and that an examination is therefore not necessary. Some people simply don't feel like wasting their time in the waiting room, especially since the doctor probably won't be able to help them anyway and painkillers are freely available at the pharmacy anyway.

But the tenor is pretty clear and should give the medical profession something to think about. To put it a little exaggeratedly: What should one think if a good third of drivers would rather try to repair their vehicle themselves because they had no trust in the workshops?

Apparently, little is being done by the medical community to ensure that she is trusted to have the necessary competence when it comes to migraines and headaches. This is certainly also due to the minimal time that some doctors devote to their patients and their headaches: within the framework of a “three-minute consultation” it is certainly not possible to make a reliable diagnosis nor to create an appropriate treatment plan. Patients' disappointment is naturally programmed by such behavior. And it is obvious that such negative experiences are communicated to other fellow sufferers and shape their behavior.

Sources of information for self-treatment

What has just been said is consistent with the fact that 15 percent of migraine sufferers get their knowledge of how to treat their pain from friends and acquaintances. Only seven percent follow the advice of a doctor when treating themselves - the same number as treat themselves according to television, magazine or radio advertising.

At least 18 percent follow the recommendations of a pharmacist. But most people treat themselves the way the media recommends or the way they learned from family circles - with advice that has often been passed down through generations.

Self-treatment with medication

The vast majority of migraine sufferers are so disabled by their condition that they inevitably begin some form of treatment. The most obvious option is of course to go to the pharmacy and get one of the over-the-counter painkillers. However, when self-treating with medication, it turns out 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 and are therefore in the range of an effective dose. The ratio is somewhat better for painkillers prescribed by a doctor: only a third of patients take too low a dose.

Who do patients expect help from?

Of those who seek medical help at all, the vast majority of patients turn to their family doctor or general practitioner. In second place in the medical rankings, neurologists, internists and orthopedists are almost at the same level. Then come alternative practitioners, psychiatrists and psychologists, ophthalmologists, homeopaths, gynecologists, ear, nose and throat doctors, dermatologists, acupuncturists and chirotherapists.

It should be obvious that with such a diverse collection of professional groups, the same expertise in headaches cannot be expected everywhere. The diagnoses are correspondingly different. The above-mentioned study of 5,000 people also produced a shocking result: of those patients who met all the migraine criteria, only 26 percent were actually told that they suffered from migraines. In a nutshell, this means: three out of four patients go home with the wrong diagnosis or no idea at all.

To come back to the trust in doctors: Given these numbers, is it any surprise to anyone if migraine and headache patients do not feel that they are being taken seriously and prefer to resort to self-help and traditional explanations?