There’s more to managing migraine than just listening to it

By: Professor Fayyaz Ahmed, Consultant Neurologist, and Ria Bhola, Headache Specialist Nurse

A recent article by Amanda Ellison in The Guardian, Listen to your migraine to help you feel better – and to learn about yourself, highlighted how taking control of certain things may help some people manage migraine better. The author highlighted her personal experiences and made some points about what people could do to manage their migraines. While we acknowledge this may be some people’s experience; we want to highlight that many people will not see this as their experience. People with migraine have their own unique experiences that may not be shared by others.

The Migraine Trust was contacted by some people with migraine commenting that the article didn’t address the many complexities that come with living with migraine, and were concerned it may undermine people’s experience of migraine and contribute to a feeling that it is “all in your mind”, which many people face.

We believe it’s important to provide information about migraine that helps people to better understand it as a complex brain disease. It is the third most common disease in the world, affecting around 1 in 7 of the global population. According to NHS England, in the UK there are around 10 million people living with migraine. However, it is much misunderstood and there is a lot of work to be done to raise awareness of migraine and dispel common misconceptions.

Migraine is a complex disorder and everyone experiences it in their own way. There are many different types based on the symptoms, frequency, duration and severity. For example, some people experience migraine fairly infrequently (episodic migraine) while others experience more than 15 days every month (chronic migraine).  A third of people with migraine have symptoms resembling stroke (called aura). Others experience headaches without the aura. The impact of migraine on activities of daily living varies from person to person and is dependent on many variables for example the nature of their job and responsibility at home etc. Triggers are also different for different people and something that helps one person may trigger migraine in others (for example, caffeine). Migraine is, therefore, not a one size fits all condition

Migraine was thought to be primarily a disorder of the blood vessels, although this has been challenged by many scientists and clinicians and it has been established that migraine pain is due to many other reasons than simple dilatation of the blood vessels.  There are neurotransmitters as well as a cascade of events in the brain that cause a range of symptoms in addition to pain such as nausea, vomiting, sensitivity to light sound and smell and exacerbation with physical activity. In addition, migraine aura involves changes in cortical function, blood flow, and neurovascular coupling (the interaction between neural activity and vascular response).

We know the brain is a highly complex organ and getting a better understanding of migraine is not that simple. It takes time to unravel the complexities of the brain mechanisms involved in migraine and in spite of understanding many aspects of migraine we are still far from finding a cure.

There is a lot of expectation on people with migraine to understand and manage their triggers to try and reduce the frequency of their migraine. However, this is fairly difficult and can have a negative impact on the quality of their life. Many people believe migraine is just a headache and there is lack of understanding on the debilitating and challenging impact of the condition. There is often an expectation that someone with migraine should ‘just do more’ to help themselves and manage their migraines better.

While some people may be able to identify and manage some of their triggers, for a lot of people it’s not that easy. Often it is the combination of many triggers rather than a single one that cause them to have a migraine attack. It is fairly rare that someone knows about every trigger and even if they had known all of them, it is extremely difficult to avoid them. Trying to avoid all potential triggers would lead to people not being able to do very much and would have a huge impact on their quality of life.

Avoiding triggers won’t necessarily eliminate an attack that is coming or make it possible to avoid all attacks because the interaction between our brain processes and the environment isn’t simple. We also know that migraine is likely to be caused by a combination of factors not just the triggers. We need to understand that people with migraine often spend years trying to work out and manage their triggers, in many cases without being able to. By suggesting trigger avoidance as an easy way to manage migraine we do people living with it a huge disservice.

Migraine symptoms can be very disabling, can vary in severity (even from attack to attack) and there is no cure. We need to appreciate that coping with all aspects of migraine is difficult and there is a need to better support people with migraine. For example, psychological support to help with the emotional impact of these symptoms and help people deal with how they feel as a result of their migraine.

The prodrome or premonitory stage is an area where we need to raise more awareness. If some people struggle to recognise it, we should be doing more to explain what it is and how it relates to a migraine attack. We still don’t know how migraine starts and causes symptoms, but we do know the brain behaves abnormally during the premonitory stage in the areas that may be causing symptoms.

The research on the premonitory aspect of migraine has been fairly recent.  Understanding more about the premonitory stage and what symptoms it causes can act as an early warning sign of an attack. This can help some people prepare for the attack. However, it doesn’t mean that someone will be able to stop an attack from happening. It can also be helpful for people to know that what they thought may have been a trigger may actually be due to the premonitory stage and part of the migraine process. For example many clinicians believe that chocolate craving is a premonitory symptom rather than a trigger for migraine attack. As our knowledge and understanding grows it should mean we are better able to support people with migraine.

We need to better appreciate the individual nature of migraine and that there is no easy answer to managing and living with migraine. When we over-simplify migraine or suggest managing or treating it is easy, we undermine the millions of people living with migraine who struggle constantly – not just with their symptoms and the impact on their quality of life, but also with the lack of understanding from society.