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Hanna Stalenhoef

Putting migraine into words: the patient’s account is crucial for diagnosis

Migraine can’t be diagnosed with a blood test, scan or physical examination. Language therefore plays a crucial role in its diagnosis. Neurologist Joost Haan has researched the relationship between language and migraine, and looked at how migraine is described in fiction. His PhD defence is on 22 October.

A thumping headache for days on end, nauseous, unable to tolerate daylight or waiting anxiously for the next attack. Migraine is a condition that has a serious impact on many lives. There are still many unknowns about the disease, so an ultimate remedy has not yet been found. Neurologist Joost Haan treats patients with migraine in the Alrijne Hospital and has researched the genetic side of migraine in the LUMC. Now, after obtaining a BA in Literary Studies, he has also explored a completely different aspect as an external PhD candidate: the relationship between pain and language, and how migraine is described in novels.

Why is migraine so difficult to diagnose?

‘The disease can’t be seen with a laboratory test, scan or physical examination. So you can only make a diagnosis on the basis of the patient’s account and using artificial, internationally agreed criteria (see text box below). Initially these were mainly intended for scientific research but now they’re also often used in everyday practice. Because they’re artificial criteria, it’s debatable whether every patient receives the correct diagnosis of “migraine” or – often even more distressing – “not migraine”.’ 

So the diagnosis depends on what the patient says. What problems does this create?

‘Patients usually go to the hospital when they’re not having an attack, because the pain during an attack means they only want to be lying down in a dark room. The diagnosis therefore has to be based on the words and remembered pain of a patient who is currently not experiencing any problems – apart from fear of the next attack. In the past, migraine was seen as an exaggerated illness, and that’s why many people are afraid or unwilling to talk about it. Doctors need to be aware of this and to listen carefully. I investigated the role of language on the basis of my own practical experiences and also conducted literature research.’

An outpatient at a headache clinic. Photo: Hanna Stalenhoef

You also researched how migraine is described in novels. What did you find?

‘I studied four novels for my dissertation, all of which give a striking picture of migraine, as in describing the headache and seeing an aura. Three of the four novels were written in the first person and therefore describe migraine from within. The novels are too different to allow you to draw a simple conclusion. For instance, Rivka Galchen’s novel Atmospheric Disturbances is an example of postmodern confusion. The narrator is a psychiatrist who has migraine and also another psychiatric disorder, the Capgras syndrome, where the patient thinks that friends or family have been replaced by doppelgängers. I would highly recommend this novel, and also the other three: The Blindfold by Siri Hustvedt, The Horned Man by James Lasdun and When Nietzsche Wept by Irvin Yalom.’

Can patients learn something from novels about migraine?

‘Many ego documents that describe migraine give you the opportunity to read about what it’s like to have migraine; novels add a symbolic and more profound meaning to this. An important role in Hustvedt’s book is played by the stigma attached to having migraine, and in Lasdun’s by the incoherent thoughts that patients can experience due to migraine. Galchen emphasises the distorted perception of reality, and Yalom reflects on the influence of migraine on the philosophy of ‘the real’ Nietzsche. These perspectives can be valuable and can make you think about the consequences. But if people with symptoms want to know something practical about migraine, it’s obviously better to read a book about headaches or a textbook. One that many lay people read is Migraine by Oliver Sacks.’

Finally, what is your own relationship with the topic? Do you suffer from migraine yourself?

‘No, I don’t. As a neurologist, back in the early 1990s I set up an outpatient clinic for headache patients in the Alrijne Hospital, then known as Rijnland, in Leiderdorp. I also do migraine research in the LUMC. One of my personal interests is how pain is described in fictional literature. For a long time I’ve collected novels that feature migraine or headache and in 2009 I wrote a short book about them: Migraine als Muze (‘Migraine as Muse’).’ 

Joost Haan, Migraine as Text - Text as Migraine. Diagnosis and Literature.

The IHS diagnostic criteria for migraine without aura (2018)

  • headache attacks lasting 4–72 hours (untreated)
  • at least two of the following four characteristics:
  • unilateral location
  • pulsating quality
  • moderate or severe intensity
  • aggravated by physical activity
  • plus at least one of the following two symptoms:
  • nausea
  • photophobia and phonophobia
     
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