Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you in part by our generous sponsors Amgen and Novartis.
Migraine.com gives us a reason to speak up about migraine disease! Stick around as we interview Marcia Kavulich and Lawrence Ogunkua of Migraine.com about how statistics from their Migraine in America survey help shape accurate perspectives on migraine.
Since 2015, Amgen and Novartis have been working together to develop pioneering therapies in Alzheimer’s disease and migraine. Together, Amgen and Novartis share in a mission to fight migraine and the stereotypes and misconceptions surrounding this debilitating disease.
Molly O’Brien: Hello and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. Today we’re taking a closer look at how migraine impacts our life through new data. Today I’d like to welcome our guests, who both have extensive background in public health and research. Thanks for joining us, Marcia Kavulich and Lawrence Ogunkua. They are from Health Union, who owns Migraine.com.
Marcia Kavulich: Thanks so much for having us.
Lawrence Ogunkua: Thank you. Hi.
Molly: Really excited to talk to the both of you. So let’s talk a little bit about Migraine.com. It’s a great domain name to have. Can you tell us a little bit about your users and how many page views you have?
Lawrence: On Migraine.com, through our 27 online communities, Health Union actually reaches millions of readers a month. Specifically on Migraine.com, we have an online community integrated with social media that connects on average 200,000 people per day.
Molly: That is absolutely incredible, and I’m sure many of those migraine patients — Migraine.com has to be probably one of their first stops when they get that migraine diagnosis. But also, I’m assuming it’s not just for migraine patients. Can you tell us a little bit more about the people who are visiting not only Migraine.com, but some of those other websites that you have?
Marcia: Sure. So at Health Union, our main focus is meeting people where they are in their disease state journey. We also prioritize giving people what they want and curating a safe space that is free of judgment and stigma. So across all of our sites, including on Migraine.com, we publish original daily content written by patient advocates or by their caregivers, sharing perspectives on anything from diagnosis challenges to failed treatment options and just coping with the stigma faced in the workplace or from loved ones.
This can be especially useful not only for people with migraine, but also for their caregivers or loved ones, as well as colleagues and professors who could read some of these stories and maybe try to understand more of what people are really facing.
Lawrence: And something to add as well, you can also read our stories from other community members, so you can ask direct questions. You can receive advice from others in the community through our question-and-answer section. We have a very active forum section on the site as well, so you’re able to participate in interactive polls, speak directly with our patient advocate authors, who are also actively providing support to readers and members on the site.
And we also have a dedicated team of community managers and patient advocates. So what they do is they help to moderate in order to ensure that people in our community feel validated and heard, and that really creates an opportunity for people to build relationships with others who understand exactly what they’re actually going through.
Molly: I think that’s really important, especially within the migraine community, to feel heard and to feel supported, because many times, especially with migraine patients, you don’t always feel heard when trying to seek out a diagnosis or find out what’s going on. So I think that’s really valuable.
Do you feel like any of the content that you provide through Health Union is exclusive? Can you find anything from Health Union that you can’t find anywhere else?
Lawrence: That’s actually a really great question. So we believe that people are looking for support from people going through something similar, like I previously mentioned. But for Health Union, which we started in 2010, we currently have about 27 condition-specific communities, and with Migraine.com being the oldest and our largest community.
To give you an example of other things you can find, we have communities that serve chronic conditions that range from rheumatoid arthritis, multiple sclerosis, lung cancer, endometriosis, advanced breast cancer. We have a recent site, which is our HIV site, as well as our heart failure site, and our most recent site is Lupus.net.
Marcia: To add to that, I think what you can find at Migraine.com, because of the larger Health Union community, is as community managers — which we can delve into more — we’re constantly learning not only on Migraine.com, but from our colleagues and what they’re doing to connect people and get people what they want. So it’s almost like this think tank of ideas of maybe something that works on rheumatoid arthritis, for example, could apply to migraine or vice versa.
So I think because we’re not just focused on Migraine.com, we have knowledge from other disease states of people who are kind of going through similar experiences, whether it’s doctors not believing them, whether it’s feeling guilty about being a parent with a chronic disease or finding a way to talk to your child about why you might have to go lay down. We see these experiences being commiserated over across all our of Health Union communities, and because we all work so closely together as a team, I think that’s what makes a lot of our work unique.
Molly: It’s really interesting. And continuing on with that work, since 2012, you’ve been running an annual survey called Migraine in America, gathering data from this online community. Can you tell us a little bit about Migraine in America and some of the questions and some of the responses that you’ve received this year?
Marcia: Yeah, so just a brief summary is our Migraine in American survey is usually around 90 to 100 questions, and people have completed it thus far just because they want to share more about their story and they like seeing when we share the results back with them.
And I’d like to start also by saying back in 2018, we actually decided to compare the survey results that year to the survey results from 2012, and while we can’t confirm that the participants were the same over the years, we did want to look at making some comparisons. So one thing is that the participant respondents actually nearly doubled in six years, and in both time periods, the majority of the survey participants were female, at around 93%, and the average age of respondents were around 48 years old in 2018, slightly older than they were in 2012.
So the other thing that we noticed that’s a little more interesting is that head pain, sensitivity to light and sound, difficulty concentrating, and brain fog were the top five reported migraine symptoms in 2018. Back in 2012, instead of brain fog, nausea and vomiting made it to the top five symptoms. So this made us wonder, are people just more aware that brain fog could be a migraine symptom compared to back in 2012? I would venture to say yes because I know Migraine.com has certainly shared its fair share of articles and patient experiences with this originally lesser-known symptom, as well as others.
I will also add that because we’ve noticed trends of people really responding well to those articles of lesser-known migraine symptoms, we decided to then increase the number of symptoms we ask about in the survey. So the survey is always evolving. We’re always also paying attention to what’s changing in the community. So now we also ask in the Migraine in America survey about lesser-known symptoms, including food cravings, sensitivity to touch, and hallucinations to sound or smell. So that was just an interesting difference that we saw.
Lawrence: Something also to add is to kind of give you a comparison between 2018 and 2012, survey participants — we actually asked them to report their medication behavior over the previous prior six months. So back in 2012, for instance, patients were more likely to avoid migraine medication due to side effects, and they were also more likely to avoid medication due to the cost compared to those in 2018.
And also in 2018, we also asked which resources patients used to make their treatment decisions, and almost half — so 41%, actually, of survey respondents — reported that going online to read other patients’ opinions of a medication, as well as 31% of those people also reported visiting a prescription medication’s website. So this, overall, it actually shows the increasing importance of online resources for people living with chronic health conditions over time.
Molly: I think with the migraine community, learning about other people’s opinions and experience is really valuable, and we all know that everyone’s migraine journey is different. That’s one thing that we really do know. I think those data points are really interesting.
Can you talk to us a little bit about some of the data points that maybe were new to this year’s survey? Can you talk to us about some of that?
Marcia: Yeah, absolutely. So jumping up to 2019 survey, we had almost 5,000 respondents complete the survey, and this year — I can definitely touch upon CGRP and treatments, but something that we jumped into differently this year was we started also asking about people with cluster headache. And so 99% reported being diagnosed with migraine, but 11% also said that they were diagnosed with cluster headache.
So 26% of the age of onset of cluster headache was before the age of 18; however, 25% didn’t receive the diagnosis until their mid-20s to mid-30s. At first, I was kind of surprised at the fact that, one, the people who reported having cluster headache also had migraine. I kind of thought that there would be more of a separation.
But then when I really thought about it, we do hear in the community as well as in our survey that people are often misdiagnosed with cluster or migraine, and often people have to see more than one doctor before even receiving a proper diagnosis. So 75% with migraine and 83% of those with cluster headaches had to see more than one doctor before receiving a diagnosis.
Molly: That’s really interesting. Can we talk a little bit about — so we hit on the cluster and migraine diagnosis and some results from that from the Migraine in America survey. Again, I want to get back to the medication questions that you asked this year that were new. Can you talk to us a little bit about the questions asked this year and results that you saw?
Marcia: Yes, happy to. So we do see time and time again that treatment satisfaction is still not what it should be for people with migraine, and having migraine yourself, I’m sure you can certainly relate to that, although I hope not. But this is important because it translates to people not feeling that their migraine care is well managed.
So in the 2019 survey, when asking participants about their treatment plans, people expressed interest in learning about new treatment options. So while over half reported currently using a triptan, almost 30% are currently using one of the new CGRP treatments that you mentioned earlier, and more than half are actively seeking out information about the latest treatment that has become available for migraine.
Additionally, people talk about popular alternative therapies, including the CBD oil and other supplements, but this all kind of tells us that people are still really willing to keep trying to find better care despite feeling discouraged by their lack of success thus far. And that’s something that we see almost every day in our community — people just expressing frustration, feeling hopeless. But then through the stories from our advocates and from other community members, there is still that drive to somehow, someday find relief.
Lawrence: Yeah. And even to add to that, you almost want to have a disclaimer that says, “Those with migraine totally get that it’s not just a headache.” About 47% of people share that they feel that others don’t really understand this reality of what it means to be living with migraine. So from having to miss out on hobbies and many of life’s important events, to constantly worrying about disappointing people, migraine negatively impacts the quality of life of anybody who’s living with migraine. In fact, to give one last percentage for you, 48% of people that took our survey felt that migraine literally controls their lives.
Molly: It really is powerful to see these results, especially if you are a migraine patient, because I think if you didn’t take the survey and you read the results, whether or not you’re part of a community, when you’re looking at that, you feel part of the community. You can feel valued and understood, and so I think it’s really great that you are able to provide the survey. You have data.
Can I ask you, what can people learn from this survey? What do you think people can take away from this?
Marcia: I think our in America survey result shows that people are not alone. It shows that people’s diagnosis journeys are complicated. It shows that the treatment options are varied, and what may work for one person may not work for another, just as we kind of mentioned in the beginning that everyone’s journey is very different and everyone experiences migraine so differently.
But I also think it highlights the fact that there is attention being paid to this important disease. I think it also shows that you can commiserate with others when you’re — just like kind of how you said, Molly, “Well, I was reading the stats, and nothing was really surprising.” That always kind of struck me a couple times in maybe it was a social psychology class or something, where I’m like, “Well, that’s all very obvious.” But sometimes having that obvious information can feel validating.
And I also just think being able to share those infographics or share those stats with others, when you say, “You know what? 48% do feel migraine controls their lives. I’m not just making this up. I’m not being dramatic. I’m not trying to get out of work or get out of school.” I think all of those messages together can make people feel a little stronger in the fight.
Molly: That wraps up today’s episode of Spotlight on Migraine. I’d like to thank our guests today, Marcia Kavulich and Lawrence Ogunkua. Thank you for joining us here on Spotlight on Migraine. I’m your host, Molly O’Brien.
Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.
This podcast is sponsored in part by Amgen/Novartis.
*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.