Patient Perspective on Brain Health Series
The brain story of a migraineur neuroscientist
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats so you can know who you are, what you can rise from, and how you can still come out of it.” — Maya Angelou
A brain story is a story about how experiences shape our brains and minds. This is my brain story. I share it in hopes that it can empower others.
Thanks to advances in modern neuroscience, my 15-year struggle with migraines has finally turned a corner. In my new treatment responsiveness phase – where I suffer much less – I have the mental space and mindset to reflect on how migraines have influenced my life in the positive and seem to be, in fact, a super power.
My migraines started when I was 15-years of age and living in Australia. They were inherited from my mother’s family, a classic migraine with visual aura. Until recently, this meant that once every month (occasionally up to once a week) I would be struck down with vision disturbances (the appearance of fuzzy lines also known as a scintillating scotoma) for 1-hour, followed by a 4-hour pin-point throbbing headache, vomiting and then 24-hours of lethargy. My triggers are still mostly unknown and therefore cause some anxiety due to the unpredictability. Over these 15 years, I have seen many general practitioners and neurologists. The medications had all failed, including all painkillers,vitamin supplements and prescription medications. This type of monthly occurrence in one’s life, trial-and-error (with all error) medication pathway, does tend to breed hopelessness and despondency. However you have no choice as a migraineur but to soldier on.
Fortunately, 2-years ago, a new medication came on the market in the United States of America, where I now live, to change the writing of my story. It works as a small-molecule calcitonin gene-related peptide receptor antagonist and proved to be the correct answer for me. I still get vision disturbances every month that stop me from working, driving and all activities, but none of the other symptoms, so I gained control over the worst part of this 15-year saga.
To my mind, my successful treatment is down to modern neuroscience, not to mention generous health insurance. I am lucky to live in the USA where this drug is available and to have the means to access health insurance which allows for generous discounts on medications. Differences in medication access and health insurance between countries has made me very interested in health diplomacy as a means to drive high quality, evidence based approaches across low, middle and high income countries. It even led me to co-develop the field of brain health diplomacy.
As my life and career unfold, I have begun to turn from the despondency and despair of this situation to recognize the profoundly positive impact of these migraines, which I consider responsible for my design and leadership of the field of brain capital. They are a superpower of sorts.
The migraines led me into a health care pathway at university, where I completed medical school. While at medical school, I began working in neuroscience, likely driven by my desire to better understand the brain – how it works and how it can go ary. The fields of psychiatry and neurology spoke to me too – they are brain-focused and were possible for me (surgery with the inevitable standing over a surgical table for extended hours was a likely trigger and it didn’t seem responsible to have a migraine in the middle of a lengthy surgery). However, I have now learned of a successful eye surgeon migraineur.
The grit and resilience required to get through medical school, medical training and a PhD were significantly resulting from my migraine experiences and life with the disorder. When you suffer from a migraine which floors you every month-or-so you have no choice but to dust yourself up and keep on keeping on in life.
My interest in team-work to optimize efficiency, productivity and to reduce the burden on any one individual was likely driven by my wanting to reduce my concern about being responsible for letting folks down. Many hands make light work. This means I have been forced to hone my social skills to work out how to optimize team environments, who to trust and who not to trust.
I also see team-work as essential given the multifaceted nature of my brain disorder. To optimally manage migraines it requires lots of transdisciplinarity (bridging and fusing disciplines). At a high level, it requires diverse clinicians, scientists, business executives, policy and economists strategists all to collaborate to provide better breakthrough science and better, more affordable clinical care. My interest in transdisciplinary led me to lead edit a book with Oxford University Press on this topic.
Ultimately, wanting to minimize patient dependency on my clinical care led me into a career of larger scale system change-making. Such as experience in brain health technology entrepreneurship and business, public health, science diplomacy, public policy and economics.
In these system change-making endeavors, one recognizes that creativity is key to advance progress in the field of brain health. We have too much that is unknown, too much suffering and too much economic and societal breakdown owing to brain-based issues like fake news’ effects and the effects of social media on the brain. I have therefore developed practices to boost my personal creativity, such as nature-based exposure aimed at optimizing my default mode network activity and epiphany generation.
Enhanced empathy and compassion for those living with brain disorders is another added advantage of being a migraineur. You know firsthand what it is like to have an illness that medical science can only partially explain and treat. And you develop a sense of the issues of stigma as not many people really understand that migraines are an epilepsy-like phenomenon, real and non-trivial.
From a personal health angle, the emotional turbulence associated with migraines led me to take up meditation and mindfulness at an early age. I now also frequently take awe walks and bike rides in the forest for relaxation. My treating neurologist has informed me that strategies I’ve developed to maintain a healthy lifestyle in response to my migraines may reduce my risk of heart disease, diabetes and dementia in later life. We have to live our lives within tight boundaries to try to avoid migraine attacks. Migraineurs like me do our best to optimize our sleep, diet, exercise, stress, alcohol consumption and general health.
All of the above has led me to the field of brain capital whereby we need to think hard to optimize our environment and society to improve our brain health and skills. With brain health we aren’t just looking at deficits but also strengths. Our brain capital agenda argues that we need widespread policy change across all sectors, we need approaches to measuring these factors, and we need novel financing instruments. This work is totally aligned with my values, skills and lifestyle. It is a privilege to be able to work with diverse experts from around the world to achieve impact and renewed hope for individuals and communities.
If more people are to – like me – cross the rubicon from significant suffering to treatment responsiveness and effective control of their brain health, we need more investment in brain science. And more careful consideration about public policy to optimize brain health.
As inspired by the Maya Angelou quote, migraines have not defeated me. Migraines were likely a necessary evil for me to find my calling in life. We must all push on and look for the positives in our brain stories. I encourage those reading this to consider their own brain story and to share it with those around them.
If you would like to share your brain story, please contact communications[at]efna.net