Carl Cincinnato joins us for “Pick 3 With The NHF”, an interview series where we ask three questions of patient advocates, healthcare providers, supporters, and people living with migraine disease and headache disorders. Carl is the founder and co-host of the Migraine World Summit. The Migraine World Summit (MWS), an annual online event that offers hope, education, and support to people living with migraine and headache disease, will gather for its sixth year, March 17th – 25th, 2021. This free live stream event will feature interviews with 32 top experts, doctors, and specialists, and over 100,000 people are expected to attend from around the world. Click here to register for this free event.
1. How did you get involved in migraine advocacy and the Migraine World Summit?
I got involved in migraine advocacy because migraine had a devastating impact on my life for seven years. For seven years I was trapped in a downward spiral of fear, anxiety, pain, depression, guilt, and no control. I spared no expense seeing the best doctors and alternative practitioners and was getting nowhere. It got to a breaking point when I was on a week-long holiday with my then partner (now wife) where I had an attack every single day of our trip for her birthday.
My migraine had ruined the holiday and taken a heavy toll on our relationship. It was then that I made a desperate decision to quit my job to focus full-time on my health. I didn’t realize it at the time, but this was the turning point in my condition.
I began learning as much as I could about migraines. I researched and read as much as I could from medical journals and articles from peer-reviewed publications. As I learned more, I began to make some important changes in my migraine management.
Eventually, I crawled out of chronic migraines. To this day it remains the most difficult thing I’ve ever done.
I felt a deep sense of obligation to those that really knew what I was going through and had supported me. I also knew that there were still so many people still trapped in that dark room fighting a chronic migraine.
The Migraine World Summit was something that arrived shortly after as a way I could pay forward the support and information I had received that saved my life. I hoped that if I could help just one other then it would be worthwhile.
Since then the Migraine World Summit has become one of the largest patient events in the field of headaches and migraines. It has also become a platform on which we can advocate for those living with migraine disease.
2. What advice would you give to someone recently diagnosed with migraine disease?
For someone recently diagnosed with migraine disease, the first step I would encourage them to take is to learn about it. Understand how and why migraine occurs, its triggers, symptoms, treatments, and management. We all wish for a cure but until that time, like any other chronic disease, migraine needs to be managed. The good news is that migraines can be managed in the vast majority of cases. But it does require you to play an active role in your own care.
Keeping a diary is also important. Migraine attacks are often the result of multiple factors (or triggers) that change and are highly variable – even within the same person. A diary will help you uncover your habits that may be exacerbating your migraine disease and also help you uncover potential triggers. Personally, I was stubborn and didn’t keep a diary for years. I only began to improve once I kept a diary and learned about migraines, my own condition, and started making changes.
The last important piece of advice is that with frequent migraines, you ideally are working with a doctor. You may also have other health care professionals you are working with such as a nurse, pharmacist, physical therapist, psychologist, dietitian, etc. But out of all these people, the most important person in your healthcare team is you. You control what medication you do or don’t take, you control who you see, you control your own lifestyle and behavior.
3. What is your hope for the future of migraine and headache treatment?
My hope for the future of migraine and headache treatment is that I live to see a cure. For this to occur there is much work that needs to be done. For a cure to arrive we need more research funding. Migraine is the least funded neurological disease relative to its economic impact according to research by Dr. Robert Shapiro based on NIH funding data.
We have learned that stigma actually affects funding for certain health conditions like migraines. If stigma blocks research funding, then we are not able to attract or recruit new and creative medical researchers to go into the field of migraine. Therefore addressing stigma and advocating for migraines is critical.
Advocating for migraines will lead to better treatments, support, and understanding. But it requires an effort from all of us. To educate those who don’t understand. To provide accurate information. To dispel myths. To speak out in the media, in the workplace, and to lobby policymakers. The pace of change is often slow and it can seem like, despite all your efforts, little has changed – but it is necessary for all of us to enjoy a better quality of life.