Chronic migraine: Attention, attack!

She doesn't like it when it's too cold, nor when it's too warm. She hates lecture halls, the Hamburg subway, and large squares in cities. In general, she finds all places that are loud and bright terrible. She doesn't particularly like vacations either, especially not the preparations: doing the laundry, packing her suitcase, not being able to sleep because of the excitement and finally setting off without knowing what it will be like in the place where she will spend her next days or weeks.

Well, Caro Sajok himself likes it, very much so. Only the illness in her head can't stand it all.

Sajok has lived with headaches since she was a child. She estimates she has had migraines since she was 13 years old. She used to be able to treat them well with ibuprofen, but over time her symptoms became more frequent and more intense. The 21-year-old student teacher only had a final diagnosis for almost two weeks on this sunny Tuesday at the end of July. More precisely: since the day she came to the pain clinic in Kiel, the world's first neurobehavioral clinic for the specialized treatment of migraines. Her inpatient stay now lasts 16 days. On the 13th day she sits on one of three benches in the shade of the clinic garden. From here you can hear the birds chirping in the treetops and watch ferries heading towards the Kiel Fjord, just a few hundred meters away.

If you ask Caro Sajok about the time of her last migraine attack, she presses her lips together and laughs briefly to herself. “Today,” she replies. This morning? “Yeah, well, theoretically now, but this morning too.” Sajok has blonde-red dyed hair, she wears a long striped dress and gold rings on her fingers. Her voice is quiet, and yet she seems confident in everything she says, as if nothing can faze her. This is also the case when she explains why she has to laugh a little at the question: "I can't really tell when an attack starts or ends because I'm in pain every day of the month."

Migraine is one of the most common illnesses worldwide; current studies estimate that 1.2 billion people are affected. According to experts, around 900,000 people are affected every day in Germany alone. Of those, an estimated 100,000 have symptoms so severe that they lie in bed behind closed curtains or on their bathroom floor, unable to move. About 2 percent of the world's population suffers from chronic migraines. A migraine is chronic if pain occurs on more than 15 days per month for three months.

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When migraine sufferers talk about attacks, many mean much more than just a headache. Science distinguishes between different phases of an attack: the preliminary phase, which is felt by around one in three affected people. It can occur with tiredness, irritability or cravings, but also with unusually high motivation and creativity. In around 10 percent of those affected, a so-called aura phase follows, with temporary visual and speech problems and even complete visual field loss. It usually goes away after 20 to 30 minutes.

The actual headache ultimately lasts 4 to 72 hours and is often accompanied by loss of appetite and hypersensitivity to stimuli. Many sufferers describe it as pulsating, hammering or throbbing. Typically, the pain originates in one side, begins around an eye or in the temple area, and spreads to other areas of the head and body over hours. This process most likely gave the disease its name: migrare means wandering. The migraine moves around.

In Caro Sajok's case, the pain sometimes comes from the left, sometimes from the right, sometimes from the front or back, often coming from all sides at the same time. A bit like victorious Vikings who are about to conquer a fortress. They run towards her head in a full sprint, armed with bows and arrows, knives, swords and spears. They invade, devastate everything, cut and stab into every corner. “Go to bed or I’ll shoot!” they shout at Caro Sajok. She always surrenders.

Be it light, sounds, smells or touch, everything is too much for Sajok in moments like this. Often the only thing that helps is silence and darkness. "Sometimes, when I'm in a lot of pain, I talk a lot of nonsense. The words don't really come out of my mouth the way I want them to," she says. She always takes sunglasses and earplugs with her when she's out and about, as well as Tiger Balm, which she digs out of her crescent-shaped handbag in the hospital garden. “It cools me down a bit and I don’t notice other smells as much,” she says as she rubs the ointment on her temple and a little under her nose. After her attacks she is usually very tired.

30 pain days a month: That's what it says in her patient file, which Hartmut Göbel keeps in his office. He is the founder, medical director and managing director of the Kiel Pain Clinic since 2005. You can also watch the ferries from Göbel's desk. If you turn around, you see a shelf full of books several meters high and wide. Most of them have “headache”, “headache” or “migraine” in their name.

The 68-year-old knows these terms better than almost anyone else in Germany. From 1989 onwards, the neurologist and psychologist set up an outpatient clinic for migraines and other types of headaches at Kiel University. In 1992, he conducted a large population study to reveal the frequency of migraines in Germany. In 1997 he founded the pain clinic in cooperation with the AOK Schleswig-Holstein and the University of Kiel. In 2014, the hospital needs plan included it in standard care.

Everything here is tailored to the needs of people with migraines: the walls are specially insulated, there is no typical clinical light, and smartphones are prohibited in the dining room. Patients attend pain management training, sports and relaxation courses, and therapy sessions.

Because of its complexity and diversity, migraine is also known in science as the encyclopedia of neurology, explains Göbel. “Thinking, feeling, concentration, memory, everything is affected.” Hardly any illness is so disabling and so invisible at the same time. “People break their soul out of their body and look radiant the next day,” says Göbel. If you don't talk about your illness, you won't be perceived as sick - migraines are like a "hidden epidemic".

Karl Marx, Marie Curie, Serena Williams, Thomas Mann, Heidi Reichinnek – they were and are all affected by migraines. For a long time, the illness was considered an excuse; some people are still convinced that those affected are hypochondriacs or want to avoid work. Erich Kästner addresses the prejudice in his book "Pünktchen und Anton": "After lunch, Director Pogge got a migraine. Migraines are headaches, even if you don't have one."

Headaches that supposedly aren't headaches at all: They particularly often affect young women. According to scientific evidence, hormonal changes are also responsible for this, especially fluctuations in estrogen levels. While migraines occur equally in boys and girls before puberty, the frequency in women increases significantly during puberty. They are affected three to four times more often in adulthood. Many women also experience migraine attacks around their menstruation. During pregnancy, when hormones are stable for a long time, their condition often improves.

If some people only have a few attacks per year - in this case we speak of episodic migraines - the quality of life for others is massively reduced. The intensity and frequency of a migraine often changes over time; an episodic migraine can sometimes become chronic, or vice versa. According to studies, the risk of anxiety disorders in chronic migraine patients is seven times higher than in healthy people, and the risk of cardiovascular diseases, heart attacks and strokes is also significantly increased. 20 to 25 percent of all patients suffer from depression.

The World Health Organization also classifies migraines as one of the most debilitating diseases for people under 50 years of age. For severe cases, the German health care regulation stipulates a degree of disability of 50 to 60 out of a maximum of 100. According to studies, around 32 million working days are lost due to the disease in Germany. In addition, there are significant losses due to unpaid care work or in caring for relatives.

Frieda Oliva sits upright on the spacious sofa in Hartmut Göbel's office and does the math. If she stayed home every day she woke up in pain, she estimates she would have had an average of 11 sick days per month over the past few months. Even on weekends, she is often in so much pain that she cannot go out the door. Nevertheless, her illness was hardly noticed at the parent-child health clinic in Cuxhaven, where the 29-year-old has been working as a social worker since last year. Until her hospital stay in Kiel. It was like that at school and at university: “Somehow I still rock my everyday life, even though I’m actually not feeling well.”

For as long as she can remember, Oliva has remembered pain, she says. For a long time she thought this was normal. Doctors repeatedly dismissed her complaints and prescribed her medication, some of which had severe side effects - until she received her diagnosis around five years ago. Despite migraine medication, her symptoms are currently worse than ever. Ibuprofen works “like Smarties” for her, she says. Their headaches are often accompanied by dizziness, nausea, tingling in the arms and legs, problems with vision and finding words, severe fatigue and simultaneous heart palpitations. Above all, she hopes that her stay in the pain clinic will give her tips on how her psyche can endure all this better.

Oliva, who wears her hair short and her clothes loose, describes herself as a lively, cheerful person. But when she needs to talk about the emotional impact of her illness, she rolls her shoulders, takes off her glasses and wipes tears from her face. “I often feel like my illness is taking my life,” she says. Above all, she is grateful for her partner, who is always there, holds her and takes care of her when she cannot. “I regularly grab them and say, oh God, am I not the worst burden ever?”

Caro Sajok and Frieda Oliva are typical patients with a typical course of the disease, says Hartmut Göbel. By this he also means that several years have passed for both of them without a diagnosis or medical help. “There are many women who spend decades going from doctor to doctor and no one can tell them what they have,” says Göbel. But is the diagnosis really that complicated?

Actually not, one might think when looking at the International Headache Classification (ICHD-3), which appeared in its third edition in 2018. Since 1988 it has been the standard work for headache diagnoses worldwide; many forms and causes have been added over the years.

In order to diagnose migraine without aura, i.e. the most common form of migraine, and to differentiate it from other widespread types of headaches such as tension headaches, it says: Is the headache one-sided? Does it feel pulsating? Is the pain intensity moderate or severe? Does physical activity make the pain worse? For a diagnosis, those affected must have experienced at least five attacks that lasted 4 to 72 hours and be able to answer at least two of these questions with a yes. Hypersensitivity to light and noise or nausea must also play a role.

However, what makes a clear diagnosis difficult in many cases is that several of the almost 400 recorded types of migraines and headaches can occur at the same time or one after the other. Anyone who frequently takes painkillers can also get a so-called overuse headache. This leads to changes in the brain, attacks become more frequent, and medications become ineffective. Many sufferers are unable to provide precise information about the course of their pain because everything becomes a blur in their heads.

No X-ray or MRI machine will provide a conclusive result, and you will also search in vain for indicators of the disease through the lens of a highly professional laboratory microscope. A resource that is often limited in everyday medical practice is absolutely necessary for a diagnosis: time. “I have to resort to the utmost of medicine,” says Göbel with a slightly ironic undertone: “I have to talk to people for better or for worse.”

When Caro Sajok first sought medical help for her symptoms, she was 14 years old. Migraines run in her family; her mother also suffers from them. At least ten different doctors have visited her over the years, and even a neurologist couldn't help. “He didn’t really listen to me at all and basically threw me out again when he heard it was about headaches,” she remembers. “Take an Ibu,” Sajok advised others and recommended warmth in the neck and magnesium. Sajok doesn't want to believe that she was discriminated against because of her gender.

Part of the diagnostic problem is that doctors who typically see people with migraines sometimes have fundamentally different concepts for classifying and treating symptoms such as headaches, dizziness or visual disturbances. General practitioners, for example, prescribe physiotherapy, ophthalmologists prescribe glasses, orthopedists try to correct the cervical spine, internists treat blood pressure and gynecologists recommend the pill.

All in vain, because migraines, no matter how much those affected want them to be, are not caused by other causes. It is the disease itself.

For a long time there was a different opinion: In ancient times, for example, it was assumed that evil spirits caused headaches. Bone finds show that people tried to free them by drilling holes in the skull, similar to a chimney opening in the roof of a house. Another operation involved cutting the frown line muscle between the eyebrows to provide more relaxation. According to tradition, objects and even animals were placed on patients' heads or foreheads to force them to rest.

Forced idleness remains a form of therapy to this day. What makes migraine brains special is their high sensitivity. They react earlier and faster to stimuli and become less accustomed to them. The advantage of this: They tend to be more attentive and sensitive than others. The disadvantage: your nervous system is constantly under high tension. “If I have a rather slow brain, don’t notice a lot of things around me and don’t care about a lot of things, then I don’t get migraines,” says Göbel. And with a wink: “Perhaps this also explains why men are not affected as often as women.”

To date, it has not been conclusively clarified why the brains of migraine sufferers appear to function differently and, in some respects, even better. In the largest migraine study to date with several hundred test subjects, researchers blame genes. The hypothesis: For genetic reasons, the nervous system of those affected processes stimuli particularly intensively, for which it requires a lot of energy. If this cannot be supplied sufficiently, the brain uses a messenger substance to expand its blood vessels so that more oxygen and carbohydrates reach the nerve cells. This makes the cells more sensitive to pain and triggers inflammatory reactions. The brain tries to help itself - but checkmates itself in the process.

If the energy deficit arises particularly quickly, information processing in the brain also comes to a standstill. The visual cortex is affected, which is very hungry for energy, even more so than the liver, heart or lungs. The aura is an expression of their excessive demands and undersupply: things begin to flicker or flicker in front of those affected' eyes, zigzag lines or blind spots appear. Some people feel dizzy. Parts of the body start to tingle. For others, the space and also their own body image are distorted. They then think they have a smaller waist or that their arm extends like an old radio antenna. Science speaks of Alice in Wonderland symptoms.

How loudly and often the brain screams for energy and hurts also depends on external factors, so-called triggers. The word trigger comes from the earlier idea that there are specific triggers for migraines. Triggers work in some situations and not in others. Even those who are careful not to expose themselves to too many stimuli and eat, drink and sleep regularly can get migraines. Attacks only become more likely if the body uses too many of its resources - carbohydrates, water, oxygen - at once.

Caro Sajok prefers to leave just about anything that requires strain on her head and body. She played badminton for a long time and started jogging at the beginning of the year. "My boyfriend goes jogging and I thought it would actually be really cool to do that together. But every time after that I felt really, really bad." Reading is also often too strenuous for her; she prefers to indulge in a series or influencers in her Tiktok feed. “Which of course isn’t good, but it’s just a distraction, it makes me less aware of my pain.”

On the list of possible migraine triggers, stress is number one, followed by anxiety. Many sufferers suffer more from fear of the next attack than from the pain itself. Alcohol or changes in the weather are also often cited as triggers. Neither the alcohol nor the weather itself is the problem, but rather the body's abrupt adjustment to a new situation. Anything that comes too quickly throws him off his rhythm. Those who consume a lot of alcohol no longer consume the carbohydrates that could prevent an energy deficit and may sleep worse. And in weeks in which the temperatures fluctuate between 15 and 35 degrees, in which even healthy people complain about their circulation, migraine brains overreact.

According to the Robert Koch Institute, less than half of those affected by migraine seek medical help, and studies show that only around 10 percent receive treatment in line with guidelines. Experts justify this, among other things, by saying that their complaints are being trivialized. Another role is played by the fact that often the mothers, fathers or friends of those affected also suffer from headaches, giving those affected the feeling that they have to treat themselves or endure their pain - just like the others.

Headache research has made enormous progress in recent years. New insights into the mechanisms that cause migraines have also revolutionized therapy.

Only since the early 1990s have those affected been able to specifically combat their symptoms with migraine medication. Triptans are still considered to be the most effective means of acute treatment. The earlier you take them in an attack, the faster and more effectively they usually work. According to current knowledge, they inhibit the release of CGRP, the messenger substance that the nerve fibers in the brain release in large quantities during an attack. In recent years, specific antibodies have been developed for prophylaxis, which those affected inject under the skin approximately every four weeks. Erenumab was the first of four antibodies to be approved in Germany in 2018. Since 2025 there have also been so-called Gepante, tablets that block the CGRP receptor and can be used both acutely and preventively.

But so far there is no therapy that helps everyone affected. Even the antibodies only work in up to 60 percent of patients. Scientists therefore assume that the CGRP protein alone cannot be responsible for the inflammatory reactions in the brain and is currently researching other messenger substances. In addition to medication, guidelines also recommend non-medicinal procedures such as endurance sports and relaxation techniques.

Ann-Christin Hoeltje doesn't want to call the pill that recently changed her life a miracle cure. Since her migraines became chronic in 2024 after the birth of her second child, she has “tweaked a variety of adjustments”: she sleeps and eats more regularly, and she tries to reduce stress. She says this on the phone during a foot care treatment. She also bought a neuromodulation device that helps many sufferers during attacks because it stimulates nerves in the forehead or upper arm with weak electrical impulses.

The 36-year-old is sure that all of this helped to reduce the intensity of her attacks. She says she was prescribed medication, but it either didn't work for her or caused side effects. She used to try triptans, then two years ago started with beta blockers, which inhibit the effects of the stress hormone adrenaline, followed by the antidepressant amitriptyline, until she was finally injected with antibodies and finally Botox, another preventative measure to treat chronic migraines.

The solution for Ann-Christin Hoeltje was ultimately called atogepant. Hoeltje herself can hardly believe how well the medication, which she has been taking every day since the beginning of May, has worked for her. In December 2025 she had documented 22 attacks in her calendar, from January to April there were 16 each. In May then 6. One in June. In July 12, but rather mild. “It’s nothing compared to where I come from,” she says. One of her most important findings from recent years is not to take medication too late or only in an emergency. “Unfortunately, when it comes to migraines, enduring them is the biggest mistake you can make.”

The Hamburg native also explains all of this progress and general questions about migraines to the almost 40,000 people on her Instagram channel “Migraine: you ass!” on. She says that the response from those affected to the videos she has made of herself continues to overwhelm her to this day. “That’s my biggest motivation.”

Dagny Holle-Lee, head of the West German Headache and Dizziness Center in Essen, has also been relying on education via social media for years. She answers questions from the community almost every day on her “Migraine Doc” channels, and around 80,000 people now follow her. Those affected exchange their experiences and treatment options in the comment columns and show solidarity with each other. And they are angry together.

The federal government's planned health care reform gives them good reasons for this. In the future, a certificate will be required from the first day of illness, it says, and telephone sick leave will no longer apply. For people with migraines, as well as those affected by many other chronic illnesses, one day is often enough to get their symptoms under control with rest and plenty of sleep. “If you could still go to the doctor with a migraine attack to get a sick note, you probably wouldn’t need the sick note at all,” says Holle-Lee.

When Caro Sajok makes an effort, such as clenching her teeth or stiffening her neck, the smiley on the screen in front of her pulls the corners of its mouth far down. She sits in a small meeting room with round sensors stuck to her forehead that measure her muscle tension. Behind her is her psychologist Tessa Ladwig. Biofeedback is called the point of the day this afternoon. "The goal is to consciously tense and relax to get out of thought cycles. Migraine pain is even more difficult to endure when tension is added," explains Ladwig.

A few weeks after her hospital stay in Kiel, Frieda Oliva said in a voice message that she came back with a changed attitude towards herself and her illness. “I’m very grateful for that.” However, her condition is still as bad as ever. So bad that she had to quit her job. The general conditions at work would have greatly encouraged the attacks. She doesn't know what will happen next. “But I really hope that I can somehow reconcile work and migraines.���

Caro Sajok has now been medically treated; she has already received the antibody injection twice, which has not yet had much of an effect. Her goal is a few more pain-free hours, but she wants so much more than that: to successfully complete her studies and generally be able to do more things without constantly having to think about whether her illness allows her to do so.

“I won’t allow myself to be restricted like that,” she says. “It’s a decision I made and I’m going through with it now.”