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“The pain was so bad I thought I was going to die”

Daisy Swaffer’s whole life is consumed by migraine. She reveals her symptoms, why she had to give up work because of the disease, and what she does to manage the pain.

The first time Daisy Swaffer experienced a migraine attack, she felt she was going to die. “I thought something had exploded in my brain and it was the end for me,” she says. “That was how bad the pain was. Now it’s like that every time.”

Daisy has been so badly affected by chronic migraine that she had to give up her IT job at the University of York. “If I’d had better care from my GP at that initial stage, I might not now be in a situation where I can’t even work,” she says. “But back then, the doctors gave me some tablets and sent me away. I didn’t get any more support, which meant my migraine got worse and worse.” Before stopping working altogether, Daisy typically had between 18 and 21 days of migraine a month and would experience pain every day.

Daisy’s migraine started relatively late in life. She was 29 and her trigger event seems to be a particularly stressful period in her life. Apart from the crippling pain, she can experience other symptoms. These vary, but can include sensitivity to light, nausea and vertigo. Movement is excruciating.

Taking a holistic view of migraine management

Daisy has since been referred to a specialist and learned how to manage the disease more effectively. “You have to take a holistic view of your life and constantly monitor which factors will lower your threshold and trigger a migraine,” she says. Because of COVID-19, she hasn’t had access to a newly-approved migrainespecific preventative medicine; and, of the other preventatives available, only one has proved tolerable and its effect is limited. She also takes a number of acute medications that can abort an attack — but only if taken at exactly the right time, “which is difficult to judge.” Daisy’s advice to anyone struggling with chronic migraine is to share stories and find support from other migraine patients on the internet. “But the biggest thing is to talk to people who are close to you and get them to read what you’re reading,” she says. INTERVIEW WITH “They’re going to need to understand what you’re going through if they are to remain part of your life.”

Migraine – how much control do you actually have?

WRITTEN BY

Dr Nazia Karsan

Headache Clinical Research Fellow, King’s College London

WRITTEN BY

Dr Goadsby

NIHR-Wellcome Trust King’s Clinical Research Facility, King’s College London Some migraine sufferers consider they can trigger a migraine. Some have symptoms before headache, which can be mistaken for triggers. How much control over whether you have an attack or not do you really hold?

Migraine triggers

Many people with migraine identify factors, such as foods and bright lights, that they consider as triggers for their migraine attacks. Some feel a change in pattern of regular behaviour, such as altered sleep and food and drink intake, can be triggers. We know that the brain of someone with migraine likes balance; such as regular sleep and meal patterns, and we also know that migraine can be triggered by alcohol and the menstrual cycle. The evidence for other triggers is less impressive. When researchers have tried to trigger migraine in experiments using measures such as exercise, chocolate ingestion and bright light, they have largely been unsuccessful.

Premonitory symptoms

Many sufferers, when prompted, can identify painless symptoms of a migraine attack starting hours to days before headache, that act as a warning of its onset. These are called premonitory symptoms. A range of symptoms have been reported including mood and cognitive change, light and sound sensitivity and food cravings.

The brain is already behaving abnormally before headache, which we know from studies of electrical activity and imaging. Given the brain areas involved during this time include those that can generate food cravings, then, for example, sweet cravings could occur before you know the attack has started. If you then eat some chocolate, and soon after develop a migraine headache, you may think that the chocolate has triggered the migraine. However, the attack had already started. In this situation, it is conceivable that the chocolate was correctly associated with the attack, but incorrectly attributed as a trigger. The same could be true for other triggers like bright light perceived as a trigger and light sensitivity in the premonitory phase, and strong smells as a perceived trigger and smell sensitivity in the premonitory phase, among others.

Systematic symptom capture in this way could help shape migraine therapeutics going forwards

the pain-generating pathways in the brain, we do not really know how the migraine attack starts in the brain and causes premonitory symptoms. We know that the brain behaves abnormally during this time, in areas that could feasibly be causing the symptoms, like mood and memory areas and the part of the brain responsible for regulation of food and water intake and sleep cycles (the hypothalamus).

The similarlity in premonitory symptoms with some reported trigger factors, the involvement of corresponding brain areas during premonitory symptoms and the general difficulty in triggering migraine experimentally, have made us think that perhaps many triggers are misperceived as early migraine attack symptoms and that avoidance of lifestyle and environmental factors may be unnecessary and unhelpful.

How much control do you have?

This leads to the question: how much control do you have over your migraine? The associated question being, is ‘trigger avoidance’ a useful treatment strategy? We would suggest detailed diary documentation of attacks, with symptoms and perceived triggers before pain, and pain onset relative to these, so that a sufferer can evaluate the reliability of a particular trigger factor, or indeed assess if it is actually associated with the corresponding premonitory symptom.

Systematic symptom capture in this way could help shape migraine therapeutics going forwards, enabling assessment of early treatment, trigger modification and attack prediction. No doubt many migraineurs can identify triggers; however, if you cannot, perhaps reflecting on early premonitory symptoms will provide understanding and new answers.

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