The Migraine World Summit is a week long event held every March, which brings together a host of leading migraine experts, doctors and specialists from around the world. It is an amazing resource of information - and inspiration - with interviews delving into everything from common migraine triggers, to the latest developments in research and treatments.
We can’t control the waves, but we can learn to surf - Dawn Buse, PhDThe online summit's daily talks are free for 24 hours, but for those who missed out, all the interview recordings and more are available for a fee via the website linked here, (with up to 50% of funds raised from the Migraine World Summit going towards their migraine nonprofit partners, such as Migraine Again).
The week long talks can be tough for me to follow as a sufferer of chronic migraine - prolonged time in front of a screen, and trying to take on a lot of new and sometimes complex information when in pain is tough! But I'll share some of what I learnt and found interesting at this years event.
Don’t let anybody ever tell you ‘it’s just a headache’ - William B. Young, MDOne of my favourite talks of the summit was by Dr William B. Young, Neurologist and Headache Specialist at the Jefferson Headache Center, with his talk 'Are You Really “Just Fine”?'.
He begins by asking why we hide the fact that we have migraine. Is it because we don't look sick? Because friends, family, colleagues can't see our symptoms? Or because there is no diagnostic scan or blood test to prove our diagnosis?
He talked about his patients "putting on their armour" as a coping strategy, and "faking 'well' all too often", despite the World Health Organisation considering migraine the second most disabling disease in the world - and it's something I resonated with completely. So often I've gone to work with a migraine - unable to see clearly, in pain, nauseous - and most of the time my colleagues are none-the-wiser to my pain. (Excuse me Academy - but where's my Oscar?)
Dr Young then shared some shocking statistics - did you know that 90% of us are unable to function normally during a migraine attack?
He then went on to show that 44% of chronic migraine patients questioned felt that they would have a better relationship with colleagues without migraine, and 61% felt they'd have a better romantic relationship. This number rises to 81% when asked about their enjoyment of free-time and overall health. And half of chronic migraine patients felt they'd have a better career and be in a better financial situation without migraine. All thoughts I've often had myself.
He ended his talk with a powerful statement:
Opening up about migraine takes courage, but migraines makes courage. - William B. Young, MDJust getting through the day with migraine is an achievement in itself; doing it without those around you knowing what you're going through is too. But sharing your vulnerabilities with friends, colleagues, family - even strangers on the internet - takes courage, and it's a strength we've had to build over the years. Some have struggled to get a diagnosis, with finding the right doctors, with finding a treatment that works - or with access/funding for new treatments.
It's then hard having gone about your life trying to hide your symptoms, to trying to convince those around you how disabling those invisible symptoms in fact are - but it's so important that we do share! Hopefully by improving the general understanding of migraine, the better care and compassion people will have towards sufferers.
A really interesting talk - and one that I can in no-way do justice by trying to summarise was Migraine Genetics, MTHFR and Concussion by Professor Lyn Griffiths. She talked about the research on genomes and migraine, and how a combination of studies totalling 60,000 participants has identified 40 different genetic loci in common with migraine. She discussed migraines as having "strong familial aggregation” - something some of you may have already known from experience - and that 50-60% of migraine components are genetic, with the rest being from things such as environmental, lifestyle, food triggers etc.
How Pain Works in the Migraine Brain by Patricia Pozo Rosich, MD, PhD was another interesting talk - but one I felt quite scared by. She opened by defining pain as a built in mechanism which is meant to protect us - to help us survive. It's an alert system that tells us when something is wrong.
But does pain change the brain?
Dr Pozo Rosich noted that changes in the brain have been found in chronic migraine patients. It is believed that after an ‘x’ amount of attacks, or years of living with pain, that certain parts of the brain have lesions secondary to the experience - it’s believed that these lesions are not reversible, and so the sooner you treat the pain, the better.
She talked about the emotional response to pain, and how the fear of having an attack can lower the threshold to actually having another. (Something which was also touched on by Christina Treppendahl in her talk Status Migraine: When Pain Doesn’t Stop). The repetition of attacks doesn't allow for proper recovery, and your brain therefore doesn't need much input to trigger another attack - leading to a cycle of pain. The longer the pain goes untreated, the harder it is to treat, and the slower your response to new treatments will be.
Understanding Migraine-Related Mood Disorders by Steven M. Baskin, PhD, Psychologist and Founder of the New England Center for Headache, Behavioral Medicine, discussed the prevalence of anxiety in migraine patients - with over 50% of migraine sufferers also having some kind of anxiety disorder. He notes that around 30% also suffer with depression.
If you have migraine then you’re more likely to suffer from an anxiety or mood disorder, if you have an anxiety or mood disorder then you’re more likely to suffer with migraine. - “they travel together” he says - but one is not simply a side-effect of the other that can be ignored, Dr Baskin states that they are co-occurring disorders that both deserve attention.
You have to be a very firm advocate for yourself - Steven M. Baskin, PhD
He ended his talk by imploring those watching not to feel stigmatised by migraine, or by psychiatric disorders - and to seek care for both - because people who treat both disorders have a better outcome.
The last talk I want to highlight is The Science of Light Sensitivity and How to Manage It by Rami Burstein, PhD Professor of Anesthesia and Neuroscience at Harvard Medical School. Light sensitivity (or photophobia) is a phenomenon where light makes the headache more painful - and interestingly migraine is the only pain disorder linked with photophobia.
Light increases the intensity of pain by 20-25% - which is so important as it can be the difference between the pain of migraine being bearable and unbearable. The burden of disease can be changed dramatically by light.
The colour of light also has an impact - with blue, red light yellow and white light found to make head pain more painful in patients with normal vision. Green light however was found to do the opposite - with both head pain and the magnitude of autonomic symptoms decreasing under green light. Green light was found to be calming, soothing and comforting - and the longer you’re under green light, the better the effect it has on migraine and it's symptoms - improving anxiety, cognitive decline, brain fog and nausea.
Dr Burstein stated that cutting down blue light, in general, is good for you. However filtering light would be priced way beyond consumer viability at present.
But I'll end my post with another of my favourite quotes, and this one was from the patient panel;
because the summit does so much to keep me hopeful - with the research being done into migraine, to the treatments soon to be released - and seeing the care and compassion those involved have for migraine and migraine sufferers. Hope is what keeps me going. Always.My biggest success is hope - Shirley Kessel
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