Being Real About Chronic Migraine: A Conversation With Paula Dumas

Nora McInerny:

Life sometimes has a way of blindsiding you with a feeling of being overwhelmed at the worst possible time. It could come while you're out with friends, running an important meeting or just with your family at home, a spiraling thought that leaves you feeling helpless. That's why you have your self-care, your coping strategies, that's why you have us.

I'm Nora McInerny and this is The Head Start: Embracing the Journey, a podcast where we'll be taking all those things you usually save for your friend group out into the open so we can all find a bit of optimism. I'll definitely be sharing my experiences and vulnerabilities and trying to pick up some things along the way to work into my own routine, but this show isn't about me, it's about life, and wow, that just made it sound very deep. I guess it will be deep, but it won't be heavy. For those battling chronic migraine, these conversations are going to be even more helpful and relatable, so definitely stick around.

This show is brought to you in partnership with AbbVie. So first, let's hear some important safety information and stay tuned to the end of the podcast for more.

Speaker 1:

Indication: BOTOX^® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older.

It is not known whether BOTOX is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).

Important Safety Information: BOTOX may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX:

• Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.
• Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.

Please see Important Safety Information, including Boxed Warning, within this podcast or on the website below.

Nora McInerny:

Hi guys, welcome back. Somehow this is the last episode of our first season. For months I've been having conversations with Dr. Rhyne and extraordinary people who are living with migraine attacks and chronic migraine. This is not a life experience that I share with them, but like every conversation I have, I am so grateful to everyone who has been on this show for opening themselves up to the world, for sharing the pieces of themselves that might be hard to share with someone who knows and loves you, let alone a complete stranger on a video call. I know that this is not a small thing to ask of somebody, but even the shyest among us want to be heard. Maybe not by thousands of people, but by someone.

One of my favorite writers is the author Laura McKowen, who wrote one of my favorite quotes of all time. I can repeat it by heart, and I do often and I will right now. Laura wrote, "One stranger who understands your experience exactly will do for you what hundreds of close friends and family who don't understand cannot. It is the necessary palliative for the pain of stretching into change. It is the cool glass of water in hell."

Laura was writing about sobriety, but that sentence holds up when we are sharing experiences about anything. To find a person who gets you, to be the person who gets someone else, this is what gets us through. It's what we're talking about with today's guest.

Paula Dumas is the producer and co-host of the Migraine World Summit and a board member of the American Migraine Foundation. Paula has been able to see firsthand how sharing stories and making connections with people living with chronic migraine can make a difference. As someone not living with migraine, I'm looking forward to talking with her even more, so I can hear about some of the impact that she has seen and felt as a part of this community. But first and hopefully not last, let's hear from my friend, Dr. Rhyne.

Hello, Dr. Rhyne. Good to see you again.

Dr. Christopher Rhyne:

Hey, Nora, what's going on?

Nora McInerny:

Today is a little bit bittersweet, because one, I get to see my friend Dr. Christopher Rhyne. On the flip side, this is our last episode.

Dr. Christopher Rhyne:

It has been a heck of a ride. From a doctor's standpoint, learning the podcasting universe has been really fun.

Nora McInerny:

I've learned so much from you and from the chronic migraine community. I love sort of dipping into a community that I'm not a part of and observing and learning, and I have had my eyes truly opened to so many people's experiences. It is really truly humbling that we've gotten to have these conversations with people who are living with chronic migraine, and to learn so much from them and from you has just been so wonderful.

So Dr. Rhyne, today we're actually going to do something a little bit different. Usually I sit down and I just ask you questions, but instead today I'm going to sit down and I'm going to say out loud some of the myths that people believe about chronic migraine, and you are going to set the record straight.

Dr. Christopher Rhyne:

Episode eight, we are myth busting.

Nora McInerny:

The word fear has come up in a lot of these interviews, and a few keys to navigating these fears have been connecting with other people who understand and finding the right headache specialist. A big reason for this is you do need connection with people who understand, because there are so many misconceptions about chronic migraine. Let's talk about some of those misconceptions.

Dr. Christopher Rhyne:

We're talking about a true or false kind of deal?

Nora McInerny:

A true or false. So I've got myths for you to debunk for us, for me, for our listeners.

Dr. Christopher Rhyne:

Deal.

Nora McInerny:

Myth number one, and this is one that I am not afraid to say I kind of used to believe, and so I'm going to cringe as I say it, chronic migraine is just a headache?

Dr. Christopher Rhyne:

So that is not true, that is absolutely a myth. Chronic migraine is a neurological disease, chronic migraine is associated with more than just a head pain. It's often associated with nausea, sensitivity to light, sensitivity to sound or odors, difficulty concentrating, thinking clearly. People living with chronic migraine can even have visual disturbances, numbness, language impairment, and rarely in some really rare cases even weakness. So it is an all-encompassing experience, not just a headache.

Nora McInerny:

Myth number two, there is a diet plan that will cure chronic migraine.

Dr. Christopher Rhyne:

This is also just a myth. Although there are foods that generally are thought to trigger migraine attacks, unfortunately the truth is there's no diet plan that will cure migraine. We've talked about foods that are thought to trigger migraine attacks with some of the guests that we've had, so some of the foods that are associated that we've talked about include alcohol, tyramine-containing foods like chocolate or cheeses, or nitrogen-rich foods like cured meats, even some pickled or fermented vegetables.

But that list is extensive and the experience with that list is also really individual and personalized, and so this is something that I would work through with your headache specialist, with your neurologist to identify what those might be and find those triggers to avoid.

Nora McInerny:

Okay, myth number three, caffeine is the cause of my migraine attack.

Dr. Christopher Rhyne:

So, caffeine is unique. Too much caffeine can trigger migraine attacks, but if we're regular caffeine consumers, unfortunately stopping that caffeine can trigger migraine attacks. So the moral to the story here is remember that tea, soda, sports drinks, pre-workout drinks and obviously coffee all can have caffeine, and so we just want to watch labels and see what we're consuming. We want to look at the amounts of caffeine that are in these different drinks so we know exactly what we're taking into our bodies. Also, caffeine can be found in some acute medications that actually help manage your migraine attacks.

Nora McInerny:

You have to watch out, because I drank a sparkling water recently that had caffeine in it.

Dr. Christopher Rhyne:

Yeah, you have to be really careful and look for it.

Nora McInerny:

Here we go. Myth number four, there are no preventive treatments available for chronic migraine.

Dr. Christopher Rhyne:

We are on a roll right now, Nora, this is also not true. So, there are two main types of treatments that we've talked about. Through the podcast, we've talked about acute treatments which are going to stop that headache right now, and there are preventive treatments here to that piece of the myth that are built to keep that headache from showing up in the first place. The goal of that preventive therapy is to reduce frequency, intensity of those migraine attacks. There may be preventive options available for you to discuss with your doctor.

Nora McInerny:

Myth number five is chronic migraine only affects women.

Dr. Christopher Rhyne:

More than half a million men experience chronic migraine in the United States today. Technically, migraine tends to present more in women, and so it is a problem that women deal with, but men also deal with this too. Here's the statistics. Migraine is three times more common in women than men, but migraine can affect people of all sex and all gender.

Nora McInerny:

Myth number six, our final myth, I just have to get through a migraine attack alone.

Dr. Christopher Rhyne:

First of all, the myth is completely untrue, but I cannot tell you how much I hear this, and it's a bummer, man. Yeah, it sucks.

Nora McInerny:

Yeah, I understand why people think that, because it's happening to you, right? It's not happening to your colleague, it's not happening to your partner. It can be really hard when you are going through something physically that somebody else cannot feel to ask for help, because I really do think it's a very real fear that if somebody sees this part of you, they might not see the rest of you.

Dr. Christopher Rhyne:

The thing that breaks your heart in half is watching people try to do this alone. There are thousands of advocates out there, there are hundreds of doctors and there are millions of people with migraine who are absolutely here to help you through this, and to offer sometimes just a, yeah, man, this stinks, me too kind of attitude.

Sometimes therapeutic intervention ideas like I do with my patients, sometimes opportunities to go on a Miles for Migraine 5K run or a Shades for Migraine advocacy where you wear sunglasses one day a year because of light sensitivity awareness when it comes to migraine, or it's just somebody to just sit next to you while you're dealing with your headache who knows when to go get the next ice pack. So yeah, they don't have to do this alone. It's the only reason I get out of bed and go to the hospital every day is just so people don't do this by themselves.

Nora McInerny:

That was wonderful. I had a great time dispelling preconceived notions with you.

Dr. Christopher Rhyne:

I loved it too, Nora.

Nora McInerny:

I'll be right back after the break with Paula Dumas, so stick around.

Welcome back to The Head Start: Embracing the Journey.

Paula, hello. Welcome to the show.

Paula Dumas:

Thank you. So wonderful to be here.

Nora McInerny:

I have a question for you, and it is a big one. What is the best book that you have read this summer?

Paula Dumas:

Ooh, I just finished Demon Copperhead.

Nora McInerny:

Who wrote that? Tell me about it.

Paula Dumas:

Barbara Kingsolver

Nora McInerny:

Oh, yes. Yes, I can see that book cover.

Paula Dumas:

Yeah, it's a phenomenal book. It's entertaining, but it's really a commentary on how we treat people who are struggling with opioid addiction, poverty, and being an orphan really through no fault of their own.

Nora McInerny:

I love Barbara Kingsolver. I love her world building and her use of language and the way that her books are huge stories, and they're always really heavy too. Every Barbara Kingsolver book I've read in hardcover and it's a hefty book, but I fly through them.

So we are here to talk about books obviously first and foremost, but we're also here to talk about Chronic Migraine, and I know this is a world that you are a part of in so many ways as an advocate for Chronic Migraine. What did your Chronic Migraine look like?

Paula Dumas:

So, I was first diagnosed when I was 23 and the headaches were diagnosed as migraine. It became chronic pretty quickly, and I remember that, because I remember how much my employer was helping me try to manage the nearly daily migraine attacks. It was a major obstacle in the plans I had for myself. I had plans, and then bam, Chronic Migraine came along.

So, collapsing the story. It was chronic in my 20s and 30s and by my late 30s I was like, "Something's got to give." So, I finally went to an inpatient headache clinic to try to get care, and I tried Eastern medicine, Western medicine, went to different specialists, anybody I could find. I had a business trip to Beijing, I even went to the Institute of Herbal Medicine looking for help.

Then finally when I started working on migraineagain.com back in 2014, I realized how much I didn't know and how much I was depending on others to fix me instead of taking care of myself and putting myself first. So, I realized that my migraine attacks were not going to go away. It simply was a neurological disease that I was going to be living with and I needed to figure out how to manage it.

Nora McInerny:

I love knowing two things. One, that you had a supportive work environment and a boss who was really invested in helping you navigate your health in what sounds like a really humane way, and also that you had plans for a really big full life. Talk to me about how Chronic Migraine has helped to shape your life.

Paula Dumas:

Yeah, so when you're driving down the road and you see one of those giant orange detour signs, that's Chronic Migraine. It is a detour. It will take you off whatever path you thought you were going down, and the question is, are you going to throw up your hands and say, "That's it, I'm not driving anymore," or am I going to keep turning and navigating until I find a way?

One of the interesting things about this last leg of my journey as a health advocate is that I've discovered that really by listening to other people's stories and sharing them, by trying to serve people and connecting them to whatever they need to kind of take the next step in their journey and by amplifying their stories, it's become one of the most rewarding things in my life.

Nora McInerny:

I love that imagery of the big orange cone detour, that's a really wonderful metaphor for this experience. You do so much work, you are a part of so many organizations, you have done so much work building community, and a huge part of building community is creating that space for people to share their stories.

Can you share some of the standout stories? I know they're all near and dear to you. It is an honor to be a person who holds other people's stories, but what are some of those that have stuck with you after speaking with so many people who are living with Chronic Migraine?

Paula Dumas:

Yeah, there are so many amazing stories, and the fact that migraine does not discriminate. I know that you interviewed Kristin Chenoweth, I had the opportunity to hear her story. So hearing celebrity stories, those are always poignant and surprising, but hearing the stories of everyday people like the nurse who cannot finish her shift, because the lights in the hospital and the sounds, and the sometimes putrid smells even of the Pine-Sol in the hospital are such an assault on her, and she has to leave her patients in the middle of her shift to go home and literally go to bed. Those kinds of stories rock my world.

The kindergarten teacher who has to sit and wait in her room for a sub to show up. The men who struggle with this disease, their stories are often not told. I've interviewed Hall of Famers like Terrell Davis, but also military veterans who went to serve their country and they come back with these headaches that they don't understand and can't talk about, and it's very tough for these very proud veterans to talk about it.

One woman really struck me. She was a police officer, she says, "I went out to try to cover for my partner and I realized I couldn't hold my gun steady, because my hand was shaking." She says, "I couldn't see clearly, 'cause I was getting an aura, and I realized I'm putting other people's lives, my partner and all the people I'm supposed to protect in danger. I need to take a desk job." And that's what she did.

Nora McInerny:

Yeah, so many detours, so many people just being rerouted through the world. Those are all really powerful. What do people tell you is the most impactful part of sharing and learning from all of these different stories?

Paula Dumas:

I think they see themselves on the pages, on the screen. They feel a sense of validation like, oh my gosh, that happens to me. I've also served in various advocacy programs, and one of the most powerful is called Headache on the Hill, and we gather all these advocates from as many states as we can get to go to Washington DC and tell congressional leaders why we need more funding for migraine-related disorders.

If you could be on the bus on the way from the hotel to Capitol Hill and just hearing all of the different people talk about, "Oh my gosh, you get that too?" And the symptoms that they experience. It's just all these weird things that may be part of the Chronic Migraine experience, or a boss who doesn't understand you or a spouse that's fed up with having to cancel plans.

Nora McInerny:

Yeah.

Paula Dumas:

One of the reasons why my husband and I got into this space in the first place, because we thought maybe we can help.

Nora McInerny:

Oh, I love that. I do believe that people want to be good to each other. They want to be a good boss, they want to be a good friend, they want to be a good partner. What work is there to be done so that people like me can be more supportive to people living with Chronic Migraine, not just interpersonally, but also on that systemic level?

Paula Dumas:

I'm so grateful for the people who have shown kindness and understanding. My husband said he has learned patience because of Chronic Migraine, because he's had to face the disappointment of our canceled plans of all those unanticipated trips to the hospital of the changed career paths, the ruined vacations. So, he's learned patience and empathy.

I think we have a lot of awareness building to do particularly in the workplace, which is a ground zero of conflict for many people. It's where people miss out on promotions, they deal with stigma from coworkers who don't understand. One of my least favorite, but well-recognized stats is that four out of five bosses think that migraine's not a legitimate reason to call in sick to work.

Nora McInerny:

Four out of five is almost five, that's a lot.

Paula Dumas:

Yeah, so obviously we have a lot of work to do. If people in legislative roles understood the amount of suffering and disability that migraine attacks cause, they would probably ink a few more checks for migraine research, because it is wildly underfunded relative to its burden on society, so we got a lot of work to do in policy work as well.

Then I would love to see people with Chronic Migraine cast in the media in a more heroic fashion. The people who I've met, the people who I've interviewed are some of the most resilient, empathetic team players who plan ahead, incredibly courageous warriors. So I am in awe of the people in our community, they astound me every day.

Nora McInerny:

I agree, especially after making this show. Paula, we like to end our show by asking our guests to share a message for people who are living with Chronic Migraine. This is what you do every day. I know, we don't necessarily call it advice, but is there a message that you would like to leave our audience with?

Paula Dumas:

Yes, you have to stay hopeful and keep seeking and connecting with others, and more importantly, I think as we're talking about the power of story, it's important that you think about your own story and think about yourself as a character in your story.

You can begin to rethink that story and reframe that story, so when you hit that detour, you take that detour and you go, "Well, I wonder where this is going to take me? Maybe someplace new, maybe someplace better, let's just go along for the ride." So you get to rewrite your own story, stay helpful and stay tenacious, and take good care of yourself.

Nora McInerny:

That was perfect, that was beautiful. Paula Dumas, thank you so much for joining us here on The Head Start: Embracing the Journey. It was a pleasure to get to know you.

Paula Dumas:

Oh, so fun to get to know you too, Nora. I enjoy your other podcast, I've been listening to it.

Nora McInerny:

Oh, thank you. Oh, that means so much to me.

Paula Dumas:

Yeah.

Nora McInerny:

That means so much to me. This is where we record them, half in my closet.

Thanks for listening to The Head Start: Embracing the Journey. We hope you found something worthwhile here with us today, a new coping strategy, a relatable story, the comfort of knowing you're not alone. I'm so happy to be a part of creating this community for all of us, and especially for people living with Chronic Migraine. If you haven't found a treatment plan that is working for you, please do reach out to your headache specialist to explore your options.

I truly hope this has helped you find a bit of comfort and maybe a smile, maybe. Thank you so much for joining us for season one of The Head Start: Embracing the Journey, and stay tuned for more important safety information.

The Head Start: Embracing the Journey is hosted by myself, Nora McInerny, executive produced by Yvonne Sheehan. Our head of post-production is James Foster, our researcher is Ciara Kaiser, and our writer is John Irwin. Original music by Soundcat Productions and Artlist.