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1 “A Holistic Assessment of Patient Needs in Migraine Prevention: A Tale of Two Patients” Symposium Held at 2019 Scottsdale Headache Symposium on Friday, November 22, 2019, in Scottsdale, Arizona Transcript of Excerpts Posted on GetAheadofMigraine.com Chapter 1: The Burden of Migraine: Data and Firsthand Experiences Facilitator: Join us for A Holistic Assessment of Patient Needs in Migraine Prevention: A Tale of Two Patients, recorded November 22, 2019, in Scottsdale, Arizona. Our esteemed faculty, Dr. Dawn C. Buse, presents key topics for discussion with real migraine sufferers. Cory and Wendy are both migraine sufferers from the Phoenix, Arizona, area and have been compensated for their time. Before we get started, we would like to disclose the following: [see following screen for disclosures] Dawn C. Buse, PhD: I'm going to talk very briefly about some epidemiology and burden of migraine. As everyone knows, that's one of my favorite topics. We know, according to the Global Burden of Disease Study, that more than one billion people currently are living with migraine, meet criteria for migraine. That translates to 1 in 4 households, 1 in 5 women, or 1 in 16 men, so this is a prevalent, common condition. I know I'm preaching to the choir, so that's nice. I know we're all in this, in line, in the same boat there, that we know migraine is prevalent, and we know it's disabling. In fact, 157 million lost workdays a year is the estimate just for the US alone. We know from the Global Burden of Disease Study that migraine is the top cause of disability in people from age 15 to 49. This is a time when people are finishing high school, possibly starting college, starting careers, possibly starting families. These are the busiest days of our life. This is when you are asked the most of you, and not the easiest time to live with an unpredictable, painful, surprising, chronic illness that may come out of the blue and with attacks. So, this is a tough time of life to have a chronic, episodic condition. And there's an estimated $36 billion in lost productivity in the US alone due to migraine every year. So, we know that migraine has a significant impact on your ability to work, both presenteeism and absenteeism, absenteeism being out of the workplace entirely, presenteeism, being there but not operating at your full potential. And so, studies have shown that of people with

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Page 1: “A Holistic Assessment of Patient Needs in Migraine ... · Join us for A Holistic Assessment of Patient Needs in Migraine Prevention: A Tale of Two Patients, recorded November 22,

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“A Holistic Assessment of Patient Needs in Migraine Prevention: A Tale of Two Patients” Symposium Held at 2019 Scottsdale Headache Symposium on Friday, November 22, 2019, in

Scottsdale, Arizona

Transcript of Excerpts Posted on GetAheadofMigraine.com

Chapter 1: The Burden of Migraine: Data and Firsthand Experiences Facilitator: Join us for A Holistic Assessment of Patient Needs in Migraine Prevention: A Tale of Two Patients, recorded November 22, 2019, in Scottsdale, Arizona. Our esteemed faculty, Dr. Dawn C. Buse, presents key topics for discussion with real migraine sufferers. Cory and Wendy are both migraine sufferers from the Phoenix, Arizona, area and have been compensated for their time. Before we get started, we would like to disclose the following: [see following screen for disclosures] Dawn C. Buse, PhD: I'm going to talk very briefly about some epidemiology and burden of migraine. As everyone knows, that's one of my favorite topics. We know, according to the Global Burden of Disease Study, that more than one billion people currently are living with migraine, meet criteria for migraine. That translates to 1 in 4 households, 1 in 5 women, or 1 in 16 men, so this is a prevalent, common condition. I know I'm preaching to the choir, so that's nice. I know we're all in this, in line, in the same boat there, that we know migraine is prevalent, and we know it's disabling. In fact, 157 million lost workdays a year is the estimate just for the US alone. We know from the Global Burden of Disease Study that migraine is the top cause of disability in people from age 15 to 49. This is a time when people are finishing high school, possibly starting college, starting careers, possibly starting families. These are the busiest days of our life. This is when you are asked the most of you, and not the easiest time to live with an unpredictable, painful, surprising, chronic illness that may come out of the blue and with attacks. So, this is a tough time of life to have a chronic, episodic condition. And there's an estimated $36 billion in lost productivity in the US alone due to migraine every year. So, we know that migraine has a significant impact on your ability to work, both presenteeism and absenteeism, absenteeism being out of the workplace entirely, presenteeism, being there but not operating at your full potential. And so, studies have shown that of people with

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migraine, 13% report a reduction in their working time, absenteeism. 48% report a reduction in presenteeism due to migraine. And 52% report impairment in both absenteeism and presenteeism combined as well as daily activities. Those are from the MIDAS data, which everyone knows missed work, school, family, social, and personal functioning. Now, these are estimates from the general population. When we get into a care seeking population, the folks that are going to be in your office on Monday morning, we know that tertiary clinics are going to see people who are actually much more burdened than this, as the data show us. But we know even in the general population, there's quite a bit of burden. And, you know, this is the right time to actually start to ask Cory and Wendy, how has migraine impacted your ability to work and your career trajectory throughout your life? Cory: So, migraines sort of hit me, you know, early on. Headaches always, as long as I can remember, as a kid. But the migraine really started around the age of 14, along with the, my menstrual cycle. So, by the time I hit late high school, it was already getting closer, you know, growing from episodic to chronic. I was right at the age where I was trying to think about what I wanted to do with my life and what college am I going to go to. And so anyway, so it sort of, it stunted me a little bit with I don't even know how to manage what's going on with my pain levels right now, let alone, how do I think about going to college. But eventually, I started off, I wanted to be an artist. I wanted to be a photographer. And I feel like I sort of, early on, had to change my path and, and I realized it's tough to be a freelance business owner. And, when you're dealing with this pain as well and, you know, keeping commitments and trying to reach out to clients and just running a business in general. So, I quickly had to change my path and I luckily found something that suited me a little bit better and very, I'm very grateful for that. I know not everyone has that option, but— Dawn C. Buse, PhD: So, you really had to do a whole career— Cory: ...Yeah. For sure. Dawn C. Buse, PhD: ...A shift. You didn't change your field, but— Cory: Right.

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Dawn C. Buse, PhD: ...You said this is not something that's going to work. Cory: Right. Dawn C. Buse, PhD: I cannot sign up to do a wedding— Cory: Yeah. Dawn C. Buse, PhD: ...And then that morning realize I can't get out of bed. Cory: Right. Dawn C. Buse, PhD: I just, this isn't going to work. Cory: Yeah. Dawn C. Buse, PhD: Or when that happened, you probably do get out of bed, and you go anyway, and it's a really, really— Cory: It's horrible. Yeah. Dawn C. Buse, PhD:

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...Horrible day. Cory: Yeah. Yeah. Dawn C. Buse, PhD: So, you did come around to— Cory: Mm-hmm [affirmative]. Dawn C. Buse, PhD: ...a really, innovative solution. So, you— Cory: Yeah. Dawn C. Buse, PhD: ...Do medical photography at Mayo Clinic. And you were able to kind of figure out a way that, that you could make this work for you. Cory: ...Right. Dawn C. Buse, PhD: But you had to do a real, a real shift in what you wanted to do. Cory: I did. I did. And I, I definitely had to fight early on for limited work hours and I'm lucky that I found a team that kind of understands and can appreciate that and— Dawn C. Buse, PhD: How did that fight go, for requesting limited work hours—

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Cory: ...You know, it was— Dawn C. Buse, PhD: ...Or part time? Cory: ...I guess it was just sort of overlooked or, yeah, yeah, we'll, you know, we'll, see what we can do. You know, it was always something that was kind of like, we'll see how it works out. But I was always, and, and maybe it was more so in my mind perceived, I was always kind of pushed to do a little bit more, work a little bit more. Can you, you know, always adding things on. And I always felt like I was saying no, and I, you know, when you're early on in your career, you don't want to say no to anything, and— Dawn C. Buse, PhD: What, what w-what did it feel like to say no? What were your worries or your feelings about that? Cory: You know, that maybe you're going to get let go, or maybe, you're just not going to move up as far as you had wanted, or, I don't know, or like you're letting your team down, or, all, all kinds of things. The guilt, too. There's feeling guilty and feeling like you want to do more, but, you're a little bit, held back by the limits of your body. Dawn C. Buse, PhD: Yeah. Cory: Yeah. Dawn C. Buse, PhD: And Wendy, you've worked in commercial construction management for a few years. Wendy:

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For a few years. Dawn C. Buse, PhD: A couple. How, so how has that been? Do you travel to other cities? Do you. Do you go for quite some time? How does that work for you with living with migraine? Wendy: It was tough. I started with migraines or headaches when I was 12 years old, and back then, I don't even think they had the word migraine. I never heard anybody say that until I actually moved to San Francisco, and I finally started seeing a neurologist there. But the kind of work that I did, and I, I'm going to digress a little, and even in c- when I went to college, was probably some of my worst years, because I realized I couldn't live in the dorm. I would come down with headaches that would just, I, I couldn't function, and I couldn't take all the noise in the dorm. I couldn't take all the commotion in the dorms. So, I actually had to move out of the dorm, get an apartment by campus. I managed to get through college, moved to California, and I was in the construction industry, which is, it's an interesting industry. It's a noisy industry. It's very full of commotion all the time. The traveling was just insane. I would be gone. Sometimes I'd go on temporary assignments for six, eight months at a time. And what I found the most difficult thing to, with that was getting my medications, because sometimes I'd have a prescription that necessarily couldn't be filled in the state that I was living in. So, it'd mean a call to my husband. He'd get the medication filled for me, and then he'd fly to wherever I was for a weekend and bring me the medication, or I'd have to fly back to San Francisco and fill the prescription and get back to where I was. I didn't have access to my doctor at the time, although I'm sure I could have found one (laughs) but I wanted to stay with my doctors. It was, it was excruciatingly impossible to get through a day sometimes, but I was very, very fortunate for all the years I was working. I had wonderful, wonderful bosses and wonderful employers who allowed me to just do whatever I had to do to compensate for my headaches, and they understood, to the point that I kept a pillow in my office to put my head down when it got that bad. Or just all the little minutiae that I think people don't really realize when you're handed that prescription. It's not as easy, sometimes, as going to your drug store and filling it. It's like, you're going to be gone for six months. You know, how are you going to deal with this? Or I'd be gone out of sta-, or out of the country for a month and a half or two months. How am I going to deal with all this? Carrying, whether they were suppositories at the time, no matter what it was. You have to always think five steps ahead of just going to the drug store and filling your prescription. Dawn C. Buse, PhD: That's a really good point. That's a really good point. So, traveling with medications.

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Wendy: It was so difficult. Dawn C. Buse, PhD: ...Whether it's injectables or suppositories or something you have to keep cold. Going through security, keeping it on a plane, being in a hotel, potentially. Wendy: Well, that was one of my biggest challenges. For many years, I was on a prescription that was the suppositories that had to be kept cold. So, I might be on a flight for 10 hours, and I'd take a little kid's lunch pail, you know, a little sandwich thing and put an ice pack in it and just carry it around and take it wherever I went. And when people asked me why I was carrying it, I just told them. Dawn C. Buse, PhD: So, I think that hearing both of your experiences is so important, because it really brings the data to life and brings the data really home. And, so we, we looked at how does migraine affect your career in the CaMEO study, and we were able to survey, you know, many thousands of people. And people both with episodic and chronic migraine said, you know, “I missed a promotion due to headaches,” “I had to reduce the number of hours I work.” Cory, you just talked about that. “I retired early due to headaches or migraine,” and “I felt a burden to coworkers.” You, you both have mentioned that feeling. Wendy: Mm-hmm [affirmative]. Dawn C. Buse, PhD: Letting people down, letting your team down. When you look at these responses that we got from the CaMEO study that, that, you know, 2,000 people said, or, you know, 44% of 2,000 people said, “I missed a promotion, um, with chronic migraine,” or “I felt a burden to coworkers,” do these data speak to your experience as well? Wendy: Very much so.

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Cory: Yeah. Wendy: I was one of the ones who retired early because of it, so very much so. Cory: Yeah. Recently turned down a possible promotion, recently cut down my hours, and, and always somewhat feel a burden when I have to call out sick or leave early. Dawn C. Buse, PhD: Even though this is a biological condition, this is not your choice, you would never choose this. Cory: No. Dawn C. Buse, PhD: And you're not going home to enjoy yourself in any way. Cory: [laughs] I wish. Yeah. Yeah. Dawn C. Buse, PhD: You still carry that guilt— Cory: Yeah. Dawn C. Buse, PhD: ...and the feeling of being a burden to others.

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Cory: Always. Yeah. Even after all these years of dealing with it. It's gotten better. I've gotten better at that, but it still bothers me. Yeah. Dawn C. Buse, PhD: So, another thing that, that we know from the literature is that, that migraine has fellow travelers. You know, the, the grouchy old guy in the subway that you don't want to, it's a smelly guy on the subway you actually don't want to sit next to, with the, you know, the, the legs spread. It has fellow travelers in its comorbidities. There are quite a few comorbidities which naturally travel with migraine, and there's, there's a good 20 or 30 that we've found through the various epidemiologic studies. And some of those that are really quite common are anxiety, sleep disorders, depression, and PTSD, among many other conditions. And, you know, in some of these cases, one may precede the other. We know that, for example, anxiety and depression have bidirectional relationships. Either one may be more likely to come on before migraine or, or after migraine. But certainly, these are challenging things to live with on their own, and now you add them to migraine, and they kind of complicate life with migraine. I realize this is really getting personal up here, so I only ask you to share what you feel comfortable with, but do any of these data of these comorbidities kind of resonate with your experience? Wendy: Yes. Cory: All of them, yes. Dawn C. Buse, PhD: Did you say all of them? Cory: All of them. Yeah. Yeah. Wendy: Yes.

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Dawn C. Buse, PhD: Yes. And do you, does, does this make managing migraine or managing your life more difficult to also be managing these other conditions at the same time? Wendy: Very much so. I still to this day suffer from severe depression. To be perfectly honest, in 2004 there was a time that I considered taking my life. I just, you don't know what it's like until you live with it, to wake up every single day of your life with a headache and know that you have to, you have a whole day to yourself, you have to function. Thank you. Thank you. And you have to get to work, and you have to meet with people. You can only call in sick just so many times. You can only tell your boss you can't go to wherever they want to send you so many times. So, you just fight through it. And I just took charge of my life, and I fought through it. But there was a really grim time in my life, um, back in 2003, 2004 that I could say it just took my life over. Dawn C. Buse, PhD: And certainly, we know that, that you're not alone in that feeling from, from what we know, from each of us with our patients. And I see people nodding their heads in the audience, as well as what we know from the data, from kind of large numbers of people. And thank you for sharing that because that's really important, to know that this is common. This is not uncommon. In fact, suicidal ideation is a known comorbidity with migraine and something that we as healthcare professionals should keep in the forefront of our mind. Do you think a doctor should ask about it? And if so how? Wendy: Absolutely. Cory: Sure, yeah. I mean it's a, it should go along with it because it, there's no way that migraine is not affecting your life in that sense. I mean, it takes over every little aspect. So, it, it changes who you are, and that's bound to make someone depressed eventually. And, and the anxiety too. I wanted to mention that. I mean, that's, that's something I live with daily every second of my life, the fear of the next, you know, 10 out of 10 migraines happening. I mean, I have some level of pain all the time, but knowing that that next big one is around the corner, possibly, and out of my control sometimes, and that anxiety of it just feeling out of control of your life, it really takes over for me.

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I mean, I have had bouts of depression like Wendy, where I didn't want to live anymore feeling like the way I did. I never did exactly want to take my life, but I just knew I couldn't live like this my whole life. And so that just kept me fighting, but I did have to work through that depression quite a bit. But the anxiety is constant. That doesn't go away. Dawn C. Buse, PhD: And would you, you'd recommend that a healthcare professional specifically ask about it when they're managing your migraine? Cory: Yeah. Wendy: Absolutely. I think it should be part of every discussion that a physician has with their patient. And the anxiety, just, even to this day, almost controls my life. If I have, if I'm going on a flight, even if it's for vacation, my biggest, and I, I feel myself getting all tightened up because my biggest anxiety is I'm going to get on that plane and the person sitting next to me is going to be wearing perfume. And at that point I have been known to offer my seats to people no matter where I am in the plane to say, “Please change seats with me.” That's all these little things that come with it that people just, they don't understand. Even to this day my husband just, he's like, “Oh. Wendy she's wearing perfume. You're, you're going to have to move.” Whether it's a restaurant, whether it's a plane, whether, anywhere I go, the odors and the lights, and that's what gives me the anxious feeling walking into an environment that I have no control over. My doctor in San Francisco, it was just never even spoken of. And I would try to broach the subject, and no, that was it. We spent many an appointment with me sobbing and it's, it's not fun. Dawn C. Buse, PhD: You know, what I'm hearing, though, is how important the relationship, the trust... Wendy: Number one, you have to really trust your physician and feel really at ease speaking with him or her. Cory: Yeah. I, you know, we just want to stress how important it is to, really feel comfortable with a provider that, is compassionate, and that understands all these little things that go along with

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migraine. We've both had many physicians in the past that just didn't quite understand it. They tried, but just didn't quite understand. You know, I remember opening up to one, years and years ago, and then just sobbing during the appointment because I was just so depressed, and didn't know what to do, and didn't feel like we were getting anywhere, and I just got this blank look in return, and literally no talk about, you know, “Let's, let's talk about that depression,” “let's talk about that anxiety.” It was just kind of like a deer in the headlights. And then I just realized I, I can't talk about that with, with this provider, you know. Dawn C. Buse, PhD: So, after that experience, did you not bring it up again? Cory: Yeah, you shut down, sort of, because you just don't feel understood. But, I mean, that's all you can ask for really, a provider that sticks with you, and understands you, and knows what you're going through, and isn't scared by that. Wendy: I can go to my therapist, but they're not going to understand the migraine part of it, which to me is my whole life. It's so important to be able to be honest, truthful, and just no bars being held to be able to confide in your doctor. Cory: Your migraine specialist is probably one of the most, for me, one of the most important people in my life next to my husband, my children, my mother, you know, my parents. Seriously, I don't know where I would be without a doctor that has stuck with me this long, hasn't given up on me, has had compassion, and it, and, you know, I may not be, I'm still chronic, and I'm still suffering, but I don't feel like, I feel like I'm able to manage it way better than I used to. And, I don't feel alone. I feel understood, so that's important. Dawn C. Buse, PhD: This is not surprising. Of course, associated disability and burden increases as the number of headache days increase. That's not surprising but certainly important to keep in mind, is those number of monthly migraine days or monthly headache days do inch up. Everything in life gets harder and gets, starts to get pushed aside. Richard Lipton and I did a little interesting analysis years ago for an editorial to see what goes first. And at least in the U.S. it looked like kind of the personal social leisure drops. And then your family responsibilities, try to get someone else to cover what must be done, and maybe

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some of the more kind of special enjoyable things get dropped. And then people really hold on to work because, you know, most people need the work to support their family. And so, this is not surprising that as, as days with headache increase, that burden increases so much. And you know, we're talking about family. We know that no one lives in isolation. And you both have spouses, and Cory, you have children, little children at home. You have a seven-year-old and a two-year-old at home, Lola and Leo. And you know, we know from the CaMEO study when we asked, you know, 2,000 people with children, “Does having migraine affect your family?” Of course, it does and we can see here this increases with the number of increases in headache days that people did not participate in activities with either their spouse or their children. And, what's very interesting in this slide is this just is not just the proband with migraine. We asked their spouse. And their spouse actually reported to us as well how much family time the spouse of the person with migraine is missing due to the proband's migraine. And we see that go up, so we know this is like throwing a stone in a lake, but there are ripples that go out to family, to community, to colleagues. So, when we talk about the family burden as a mom of two young children, what does that mean to you? Cory: I mean, that's the most important thing in my life right now is raising my two little ones. And it's hard. Motherhood is hard, parenthood is hard on its own, but to have this constant pain and all the other things that come with it, it steals. It steals from your motherhood. It takes away from the joy that you want to experience with your children and the time you want to give them. And you just can't be the mother you want to be, you know, so that, that's hard. And even the decision to become a mother, you know, should, I, I fought with that for years. I would, I'm a late parent, late in the game, you know, and I, I wanted to have children sooner, but just waiting to feel better. I kept waiting for that next thing to be the magic answer, you know. And then, and then I'll start my family. Yeah. And then it just kept getting prolonged in the, with many long talks whether I should or shouldn't. Um, he encouraged me. You should have children. I didn't know if it was ethical to have children feeling the way I did. You know? Can I raise them like I want to? So, yeah, fighting with that is, has been tough and probably like the most difficult part in all of this for me so far. Dawn C. Buse, PhD: It's so core. I mean that's your heart. Cory: Right.

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Dawn C. Buse, PhD: It's so, so, so important to who you are, and what you care about, and who you want to be. Cory: Yeah. Right. Dawn C. Buse, PhD: I really appreciate both of your candor. I think it's really important, and I think your stories, which are so personal, really bring these data to life, but remind all of us when we go back to our offices next week and see patients, the importance of all aspects of life for the patients that we're caring for. Chapter 2: Migraine Preventive Treatments: Current Approaches and Question and Answer. Facilitator: Current preventive migraine treatment options include a range from antidepressants and antiepileptics to biologics and procedurals. Wendy: Everything that's on this list I have tried and probably more. This is, I've gone the holistic approach. I've, I, there's nothing that I haven't explored, and I'm willing to continue if that's what it takes. Um, just to have at some point before I leave this world, to go a week without a headache, to go four days without a headache. Cory: Right. Yeah, I've tried everything too and I've tried it so diligently, and so, you know, we've tried to be the best patients we could be, and still not responsive to most of these things. Right? But we still try. Wendy: You know, even my eating habits, my, my husband, my friends, there is so much I don't eat because I'm afraid what it will do. I don't think I've had a drink of alcohol in 20 years because I know the slightest sip or two of the drink will just spin my world around. So, I, you know, I go to parties, and I sit there with my water and my iced tea. And I'm fine with it. I think other people aren't fine with it, but I'm fine with it. And uh, just so many little facets of your life that it's not just about medication sometimes. I mean, whether it's working out as good for you or bad for

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you, for me it seems to work. But the food I eat, what I drink, what I put into my body, it just all goes with living with chronic migraine. Facilitator: Recommendations for preventive treatments offer a guideline for identifying and offering migraine prevention to patients. Despite guidelines, preventive treatments are dramatically underutilized. Recommendations for evaluating the benefit of migraine preventive treatments offer a quantitative measure including reduction in monthly migraine days by at least 50% or other validated patient-reported outcomes. Question for Cory and Wendy: What questions can physicians ask to measure treatment benefits in a way that matters to you as patients? Cory: Are, are there things you're able to do now that you couldn't do before? Or just, how are you feeling about it? What, I don't know. Wendy: Or what, what does trigger your headaches, you know, what, do you find in certain foods, do you find things that you drink, do you find the weather? Like, for me, personally, once I go over 5,000 feet altitude, I can't do it. So, therefore, my husband, who loves a lot of the National Parks and, I just don't go with him. He goes by himself. And, you know, that's, that's tough after a while, it really is, cause you want to go, and I just stay back, or what we'll do is we'll go up into the altitude, walk around 15 minutes and I'm back down. I just can't be over a few thousand feet. And I know that, so I know my limitations. But I think these are really important things for physicians to ask their patients. Like, what, what do you notice when you do certain things in your life that will set you off? Cory: Or if you've noticed, uh, you know, for example, if a patient is keeping track of their headaches with the red, yellow, green diary, you know, have you noticed, for example, my diary is all yellow, with, sprinkled with some red. I haven't had a green day in a long time. So, if a treatment's working I'm going to see green in there. So, have you had any green days?

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Wendy: And, same thing for me, I keep the same headache diary as Cory, and I find it fascinating. I guess we've been using it about a year and a half now, and it's fascinating for me to go back. Sometimes I'll just sit in my living room and just go back a year or six months to see what the month was like for me and what the month is like for me now. And things are getting better, but I also think I know how to manage it so much better now. And I know what my limitations are, which I didn't know when I was younger, and I find it so incredibly useful. I do it every single day. There's a little box at the top you can put in, I'll put in, like, woke up with a headache at 4:30, took this, it went away. Came back again at 3:00 in the afternoon, but I keep all of this information. Dawn C. Buse, PhD: And which diary are you both using? Cory: The ARMR. Wendy: Yeah. Cory: The A-R-M-R, yeah. Dawn C. Buse, PhD: So, the American Migraine Registry Study diary, and it sounds like you both like it? Wendy: I love it, I really do. Dawn C. Buse, PhD: Oh cool. Nice.

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Facilitator: Most people living with migraine are not receiving appropriate treatment. Only 26% of patients with episodic migraine and 4% of patients with chronic migraine have consulted a provider, received a diagnosis and been prescribed an appropriate treatment. Question for Cory and Wendy: What road has your treatment journey taken? Cory: It's been a long journey, um, where I feel like I've literally tried everything that I could possibly have tried. Dawn C. Buse, PhD: I'm wondering, when were you first diagnosed? At what age and what was, which type of doctor did you see and when? Cory: Right, so in the beginning. So, I had mentioned before, I started noticing I was getting the migraines, had headaches for as long as I can remember but started getting this debilitating pain during my menstrual cycle, around 14, and it would happen every month and so, you know, started seeing my family physician, but I didn't really get the migraine diagnosis until 17. So, a couple of years. It took— Wendy: About the same for me. Cory: Yeah, and then that's when I was started on my first preventive, actually, right then. So, I was fortunate that I, that I did get offered treatment early on. Along with acute treatments too, which were more effective, but despite that, despite trying so many preventives through, through my lifetime— Wendy: Well, I was about 12, although I was, my mom was very progressive in those days and she had me at a headache clinic in Manhattan but it was, you know, give her two aspirin and let her go lay down, and that was pretty much my life, just giving me two aspirin and telling me to go lay down.

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I found when I applied for disability, for, what's the word I'm looking for? To retire. I actually went through an entire list that I had kept years and years and years from different doctors. And I think I had tried over 50 different medications and I, nothing helped. It becomes disheartening and that's when the depression sets in, and that's when the anxiety sets in, is anything ever gonna help me? It wasn't until probably when I saw my neurologist in San Francisco, my headache specialist, that he finally diagnosed me with migraines, per se. Dawn C. Buse, PhD: What, what age would that have been? Wendy: I was probably in my early 20s when I moved there. Dawn C. Buse, PhD: So, so probably 10 years from the start? Wendy: Oh, easily, easily, and I found— Dawn C. Buse, PhD: Talking to a doctor. Wendy: That it's so important and I had so much respect for this doctor. I was seeing a doctor in San Francisco for maybe four or five years and absolutely nothing was helping. Nothing. I was out of work more than I was in work and finally this doctor said to me, “I don't think I can help you. You have to see a headache specialist.” And at that point he referred me over to someone in another location and, you know, it was really just hit and miss. Try this, try this, try this, try this. And when I was leaving San Francisco to move to Arizona, I was petrified, I mean, my biggest fear was that I was leaving my doctor. It's a long journey of just trying everything and then some make you nauseous, some do this, some do that. The side effects from some of these medications were just grueling. So, you stop taking them. And you move on to something else. Cory: Or the waiting for months and months to see if something's even gonna work.

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Wendy: Yeah. Facilitator: Question for Cory and Wendy: After your long treatment journeys, do you remain hopeful for the future? Cory: And being so lucky to have, um, an amazing support system at home. You know, I'm lucky that I met my husband when I was only 17 and he got to know me a little bit before migraine took over my life. Right? He knew I wasn't always so miserable. But yeah, I'm lucky to have love and support in my family, in my career and with my physician. Without that I don't, I don't know that I would be hopeful. I probably wouldn't be. Wendy: And I guess I'm hopeful because I am a lot better than I was years ago and that just keeps giving me hope that in years I'll be that much better. And my biggest concern of the younger people, kids, who really don't even know what it is now, but there are so many phenomenal things on the market now, they won't have to go through what Cory or I did when we were 13 and 14 and 15 years old, you know, just, just little things. Like, whenever I go anywhere, I travel with ice packs in case I have to lay down to put over my forehead. I put them in a little sandwich box for a kid to go to school and I throw a big ice pack in it to keep the ice packs cold and if I, if I'm at someone's house and I don't feel well, well, I have my own ice pack and I go lay down. But you have to plan all these things ahead and you have to think ahead. And you have to be an active participant. You can't just assume it's going to happen; you have to take responsibility for it. Cory: Yeah, and also hearing, another thing that gives hope, you know, hearing about all the things that are coming. Yeah, that really keeps me going, I feel like, and you know, and not, I don't ever feel like it's false hope. You know, there's a difference, you know. I feel like you have to be talked to realistically, but just to know that there's hope there, that things like this are happening where people are talking about it more and the stigma's getting a little less. That gives me hope for sure. Facilitator: Question for Cory and Wendy: What is the last thing you want to hear a physician say to you?

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Wendy: That they can't help me. To me that— Cory: The last thing you want to hear? I don't know. The same old thing over and over, maybe, too, is just as bad, right? But yeah, if they don't think they can help you, you need to hear that. Wendy: And you need to move on. Cory: Yeah, yeah. But, yeah, it is sad to hear that, too, at the same time. Wendy: And I, you know, I respect that doctor that I did have many years ago telling me, “There's no more I could do for you, you need to move on to a headache specialist.” And, and, it worked. Facilitator: Migraine is a complex, unpredictable disease. A substantial impact on people with migraine in their daily lives. The burden of migraine underscores the need for patients and physicians to work closely together on an appropriate treatment approach. Question for Cory and Wendy: What advice would you give to the physicians listening today? Wendy: Listen to your patients. Be patient, be compassionate and try and understand what it's like when they leave your door, what their life is like. Cory: And I think I said it prematurely already but that you can be someone's most important person in their life or one of their most important people on their team, whether or not, like you so eloquently said that, it, you might not have reduced their pain as much as you would like but to be there for them in other ways is huge.

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Wendy: Don't ever give up on your patients and they'll never give up on you. Dawn C. Buse, PhD: Well, I really appreciate you both sharing this really important advice with us as well as giving us a, a real personal glimpse into your lives. This has been very impactful. I know we're all emotional up here. We all need our tissue and I see some people in the audience, can I, can I give you some tissue? I mean I've really enjoyed this; I think it was really important. Thank you for being here and thank you to all of you for being here and being interested in learning from Cory and Wendy. © 2020 Lundbeck. All rights reserved. MIG-D-100101