With the FDA approval of the first ever medications specifically designed to prevent migraine attacks, this past year has seen the most exciting development in migraine treatment since the emergence of triptans over 20 years ago. Over three decades ago, researchers made a breakthrough discovery that calcitonin gene related peptide (CGRP) played a role in the mechanism of migraine, and in 2018 this ultimately led to the FDA approval of three monoclonal antibodies which inhibit CGRP: AimovigTM, AjovyTM, and EmgalityTM.
Even more exciting, this new research has helped birth a new interest in migraine and its treatment in the medical world, and there are several more CGRP inhibitors (both monoclonal antibodies and receptor antagonists) in the clinical pipeline expected to be FDA approved over the next couple of years. This will add both new preventative and abortive treatment options for a disease which, until now, has been sorely lacking in research, education, and certified specialists.
As people living with a chronic disease, our goal is always to find and share high-quality research and articles in order to inform our decisions about new treatments like the CGRP inhibitors, but what do we do when science is not keeping track with real-world application? Clinical trials only get us so far due to design constraints: e.g., time and participant restrictions. This often leaves more unknowns than knowns immediately after FDA approval, especially with new classes of medications. Once those medications reach clinical practice (real-world application), then it is not unusual to see an influx of new information.
How do we respond when we are concerned about new side-effects that are not yet well-known, or worried about the long-term ones? What about navigating the maze of insurance approvals, often exorbitant prescription co-pays, and confusing medication access programs? And then there are the endless questions about whether or not a treatment is actually working, if and when it’s time to try a new one, and the emotional fallout when the medications fail you for one reason or another.
CGRP, Social Media and Unanswered Questions
There is no way to underestimate the incredible impact of these new medications on people who have been living with migraine disease and limited treatment options for years – some for their entire lives. However, along with new classes of medication there often come more questions than answers.
With patients taking more control of their healthcare and becoming better self-advocates, people are increasingly turning to social media and Facebook groups like the one I founded, CGRP and Migraine Community. These groups are popular partly because research on the CGRP inhibitors is not complete, but also because the lack of certified headache specialists makes finding answers even more challenging. Social media support groups can offer education, guidance, and connection with others experiencing the same journey.
Not only is social media becoming a wealth of invaluable information and support for people with migraine, but certified headache specialists are increasingly taking advantage of it! Their Facebook Live chats, interviews, and evidence-based articles are helping reach the millions of people who are unable to get referrals to a certified headache specialist for one reason or another, providing much needed education and information sharing.
Social Media & New Treatment Options: A Mixed Blessing!
Strangely enough, this landscape of new treatment options combined with the massive amount of information available online, can be a mixed blessing. Facebook, in particular, provides countless opportunities in the form of support groups and pages offering support, connection, and evidence-based information. However, there is also a stream of opinion-based articles from various sources, and an endless bombardment of “ads” still sadly promising a “cure” or “permanent relief” from migraine. One of the biggest challenges is learning how to navigate the support groups, a much-needed lifeline for many, while making sure that we are accessing factual information and processing it in ways that are neither frightening nor confusing.
CGRP Medications & Navigating Social Media
Without missing out on the positive aspects of social media, and in particular Facebook groups, how can we navigate them wisely? How can we learn, connect, and sift through the new information on the CGRP medications in a way that is helpful and does not add to the stress and challenges of living with migraine? Here are a few of my suggestions if you are just starting out:
- LEARN: Listen to the many certified headache specialists who generously give of their time on social media through articles, interviews, and live Facebook chats. You can find many world-renowned doctors sharing on pages such as The American Migraine Foundation, the CGRP & Migraine Community Support Group, and at the Migraine World Summit.
- CONNECT: Consider joining a support group, if you haven’t already, to connect with others trying or interested in the new medications. However, bear in mind that many of those who have experienced tremendous success are now off living their lives, enjoying their “new normal,” which means that frequently we hear more from those who are struggling, afraid, or concerned about side effects than those who are responding well to new medications.
- READ: If the support group you belong to has a “Learning Section” or “Files,” take the time to read the information in them, because that will often give you an overview, provide the latest updates, and answer frequently asked questions.
- RESEARCH: Bear in mind that there is a wealth of information available on social media and the internet in general, with articles often providing contradictory information or personal opinion rather than evidence-based facts. Do your research before making decisions, do not be afraid to ask questions, and focus on the information provided by certified headache specialists, advocates, and organizations connected to reputable non-profits such as The Coalition for Headache and Migraine Patients (CHAMP).
- BE BALANCED: Realize that everyone experiences the CGRP medications differently. As with other migraine treatments, there is no “one-size-fits-all.” For example, while one person may be a “super responder” (75-100 percent reduction in headache days per month), another may be unable to tolerate any of them at all. At this point we do not have enough information to know who will respond, which medication may be better for you, and who is more likely to experience adverse side effects – right now, you will only know by trying! It is okay to be cautious when it comes to new treatment options – be informed about potential side effects, but balance that out by reading some of the success stories found in migraine support groups, pages, and websites.
- COMMUNICATE: Don’t be afraid of sharing new information and articles with your doctor, especially if they are not a certified headache specialist. A great doctor understands the importance of two-way communication and wants to learn, and you are your own best advocate!
Allow Yourself to Dream & Have Hope Again
With every new frontier there also comes challenges, and while this is also very true with the new CGRP medications, now more than ever this is a time to allow yourself to dream and have hope again. Not only is there hope because of the CGRP medications already approved in 2018, but because of the ones still in the clinical pipeline. Over the next few years we expect to see the first CGRP antagonists be FDA approved (rimegepant, ubrogepant and atogepant), and a surge of research about the mechanism of migraine has led to clinical trials for additional classes of medications, as well as neuromodulators.
In the CGRP & Migraine Community support group we have heard everything from, “It has literally been a life-changer” to “It’s been a total bust for me.” Countless people who have been struggling with migraine for years, some their whole lives, are finding that they are living again and are now no longer afraid of the future. Others have had moderate relief from CGRP inhibitors, but are still needing more. While some are facing the reality that these medications are not for them either because of adverse side effects or lack of efficacy.
Bearing in mind that many people with migraine have already tried countless treatment options with little to no success, the process of starting any new treatment plan can be completely overwhelming. However, that process is one that many of us are willing to go through. We are determined to do everything we can to manage an incapacitating disease that until now has been largely misunderstood, undertreated, and without effective treatment options.
This is a time of new possibilities! While we often find ourselves dealing with a balancing act between evidence-based information, unanswered questions, and patient experiences, this looks to be the start of a new era in the treatment of migraine disease. So, however you respond to the new medications, and wherever you are at in your decision to try them, be informed, advocate for yourself, and discover the value of connecting with others who understand. Most of all, have realistic expectations while holding onto HOPE, knowing that there are countless headache specialists and patient advocates passionately invested in helping bring relief to people with migraine disease. You are not alone on this journey!
Shoshana Lipson is the founder of CGRP & Migraine Community as well as Migraine Meanderings, a blog and online community. She is a migraine patient advocate and collaborates with CHAMP as well as several other migraine advocacy organizations in the USA. She can be found on Facebook as well as Instagram & Twitter.