How have migraines been fought over the centuries? Absurd treatments and real pain....

Below we pre-publish an excerpt from Celia Svedhem 's book The Dark Room, revealing the remarkable story of migraine and the struggle to understand this disease. Premiered on November 17!

"Theories about the existence of migraine personality have so far always irritated me. It seems that they are not substantive, and only contribute to the spread of prejudice and stigmatization. In fact, it is rather the opposite: in fact, it is migraine that brings out the commonalities in all those who suffer from it. After all, it is hardly surprising that someone who is constantly in pain becomes more introverted and less sociable! However, if there is indisputable scientific evidence of a link between migraine and neuroticism - which could also help explain its cause - things are obviously different. Neurotics are more prone to experiencing negative feelings, and consequently develop more or less subtle behavioral mechanisms to avoid such unpleasant sensations. This can manifest itself as perfectionism, exuberant ambition, compulsiveness and perfect organization, among other things. Neurotic avoidance of feelings, therefore, means high stress. And it seems that this very stress can be alleviated with ISTDP.

For me, migraine is, after all, a neurological disease. There are many indications that about forty genes are responsible for the biological susceptibility to it. In addition, the interaction of various so-called risk factors is essential. One of these is a neurotic personality. It has also been noted that migraine is favored by maltreatment and traumatic experiences during childhood - so these too may be risk factors. A 2021 cross-sectional study comparing the results of several different studies on migraine and stress makes it clear that the relationship between the two is very complicated and not easy to understand. In any case, the authors of the study do not see sufficient grounds to conclude that stress itself causes migraine. Instead, it seems that stress and migraine tend to exacerbate and reinforce each other. Therefore, different types of stress are considered at least risk factors.

Everyday stress, or what is referred to in English as minor stressful events, minor stressful events, has a greater association with episodic migraine, while major stressful events translate more strongly into chronic migraine. Retrospective studies of chronic migraine sufferers show that most of them experienced something classified as a major stressful event about a year or at least a few months before the condition turned chronic. Therefore, it would be interesting to compare this theory with the methodology underlying ISTDP and EAET therapy, where one typically looks for links to events that occurred in the patient's life during the period when the pain emerged or became a long-term annoyance. Based on these findings, one would rather expect a shift. When a migraine becomes chronic, it is necessary to go back in time to understand what might have been the trigger for this change.

Both prolonged stress and prolonged pain affect the body's pain modulation system, making it more sensitive over time. In other words, pain breeds more pain. And prolonged stress further intensifies it. When pain becomes chronic, the recovery process is significantly prolonged - because even if stress has largely contributed to the change in the nature of pain from episodic to long-term, simply releasing the stress is not enough. Recovery of the entire system must take place.

Since I no longer have chronic migraine, it's easier for me to identify more triggers. In my case, it's insufficient sleep, postponing or skipping meals and working for days in a row without rest. Each of these puts my body under stress in different ways. The worst is when several of them come together. When I then get an attack, my brain membranes are extremely sensitive for one more day or for several more. During such phases, an attack can easily be triggered by external factors, such as sunlight or loud noises. And one is quickly followed by another. I, for one, no longer ask the question of which single factor triggers my migraine. This is because I see that it is the result of a number of circumstances that, influencing each other, create a spiral of increasing or alleviating symptoms.

The Swedish health service still relies on the WHO-developed ICD-10(International statistical classification of diseases and related health problems). Meanwhile, there is already an update to it - the ICD-11, which is being introduced internationally. Both ICD-10 and the alternative Americanmanual DSM-5(Diagnostic and statistical manual of mental disorders) clearly divide pain conditions into two categories: they have either an organic or psychological basis. The ICD-11 introduces a new approach to diagnosing pain and distinguishes between primary and secondary pain. Secondary pain is interpreted as one of the symptoms of a disease, while primary pain is not a symptom, but is a disease in itself. Migraine is included in the category of primary pain. In addition, the new manual also introduces a clear and consistent division between pain conditions classified as acute and chronic. However, the biggest difference from ICD-10 has to be considered the fact that in the updated version all chronic primary pain is defined as pain of multifactorial etiology. It is made clear that for this type of pain to arise and persist, biological, psychological and social factors must interact. How they interact varies in each individual case and requires separate investigation. However, it is stressed that the patient should be provided with treatment that includes all interacting factors. The ICD-11 is expected to be translated in 2024 and will be ready for implementation in Sweden as well[1].

This more comprehensive approach to chronic pain will, at best, help reduce the stigma associated with the ailment. Above all, it should enable people with chronic migraine to obtain an earlier and more comprehensive diagnosis and access treatment by a multidisciplinary team. Currently, there is a lack of integrated care that utilizes the skills of all specialists necessary for full rehabilitation. Neurologists stress that migraine is simply a neurological condition, while psychologists and psychotherapists do not specialize in its treatment.

It is hoped that in the future, neurologists will work closely with one or even more psychologists. The latter should include specialists in both ISTDP and CBT and ACT. Cooperation and exchange of experience between them for the benefit of patients should also be obvious. Such a focused team could help migraine sufferers cope with social pain, remove emotional blockages, set priorities and motivate necessary lifestyle changes. This is in contrast to the current situation, in which psychodynamic therapists and CBT therapists often appear as if they deliberately do not want to understand each other and consider themselves adversaries. The team should also include physiotherapists to help with training and relaxation, and a specialist to ensure that the workplace is properly adjusted.

Another study compared the effects of the drug vyepti with placebo. Vyepti contains the same active ingredients as the other CGRP inhibitor drugs aimovig and ajovy, but was administered intravenously. All participants in the study had to spend thirty minutes each every three months in the hospital to undergo an injection - some a dose of vyepti, others a glucose solution. Patients receiving the medication had an average of four fewer migraine days per month. However, the placebo also produced an effect of as many as three additional migraine-free days per month. These results are in line with observations made in placebo studies - the positive effect proves to be greater the more invasive the treatment and the more involved the approach to the patient. Currently, for many migraine sufferers, the only contact with a neurologist is reduced to a five-minute teleportation taken once or twice. Admittedly, I was demonstrated by a nurse on how to give myself an injection, but many patients are referred to video footage. In an ideal system of care, patients are always in regular contact with the same neurologist, which allows a relationship and trust to be built between them.

Since it can take many years to determine which medications and lifestyle changes can be most effective in combating migraine, I believe that the best solution for migraine sufferers is to rely on two pillars. One is the pursuit of cure and relief, and the other is the pursuit of acceptance and adaptation. By evenly distributing the burden between the two pillars, it is possible to ensure that demanding periods of testing new medications, psychotherapy and lifestyle changes are punctuated by quieter periods, during which one focuses on adjusting daily life, as well as one's own demands, to the disease. There may be changes of a very practical nature, such as a more flexible schedule of duties and a quieter work environment. But most important in all of this - which is not always discussed - is the question of priorities. Choice and resignation. In order to be able to live a meaningful life despite migraine, we, affected by this ailment, need to be more consistent than others. So we need to constantly ask ourselves what is most important, what should we spend our healthy time on? What is of greatest importance to us and what brings us joy? In addition, the stories of Nietzsche's and Darwin's illnesses also prove the great power that lies in focusing on clear goals. Having something that is more important than a migraine can also provide a point of support in dark and difficult times.

Following the stories of historical figures suffering from migraine, I got the impression that in the past, to a greater extent than now, people viewed illness and pain as natural parts of life. There has been so much progress in medicine in the last century that they are actually less present in our daily lives today than they were in the days of Woolf, Nietzsche and Carroll. However, this also seems to entail less tolerance for illness and pain, which, after all, still exist."

Celii Svedhem Dark room]

Translated by Elzbieta Ptaszynska-Sadowska

Black Publishing

[1] ICD-11, the eleventh revision of the International Classification of Diseases and Health Problems, became effective on January 1, 2022. Poland, like other countries, has five years to implement it.