Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Michelle Tracy  00:10

I got so close to losing hope right before I found something that was helpful for me. And I think about what would have happened if I hadn’t continued pursuing things.

Joe Coe  00:23

Hello, and welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe,  Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with a dear friend, Michelle Tracy, who is an advocate, a writer and an all over amazing person that inspires me and so many in our community. Michelle, I’m so happy that you’re here today. How are you feeling?

Michelle Tracy  00:51

I’m actually feeling great today. I am so excited to be here, I have wanted to be on this podcast. I’m an avid listener. So I’m just really excited to have the opportunity.

Joe Coe  01:01

I’m so glad that we are able to have this discussion and to keep it real with the audience since you can’t see me, I’m currently without my lights on. I have a heating pad over my shoulders and neck. Had a mild injury to my neck that’s been causing pain and headache and migraine like symptoms. So the reality is sometimes we are not feeling well. And I try to be honest when I’m not. Snd really feel good, though about having this discussion with you. I think that that will make me feel better by the end of it. Let’s hop right in. And I asked most of the guests that I have on the show what their worst migraine attack was like. What was yours? Like? How did you feel, what went through your head?

Michelle Tracy  01:43

So my worst migraine attack, I would say was probably my first one. Especially because I just didn’t know what was happening. My family didn’t know what was happening. I was 19 years old. It was the summer before my sophomore year in college. And I had really severe head pain on the left side of my forehead back down into the base of my skull. I was really nauseated, vomiting a ton, very sensitive to light and sound and smell. Very sort of dizzy vertigo type feelings. And I was absolutely terrified. And so you know, my mom rushed me to the emergency room, my dad stayed home with my younger brother. And I happen to have a really incredible doctor at the ER who knew migraine, his wife had migraine, his daughter had migraine. He explained to me what was happening and that he thought it was migraine and referred me to a neurologist. And I thought, “This is just sort of like a freak accident. Like I don’t I don’t need to go to a neurologist.” But I did need to go to a neurologist. And so I’m very grateful that he caught it and explained to us what was happening, did the tests to rule out any sort of things that we were fearing and treated my symptoms in the ER and then sent me on my way.

Joe Coe  03:10

Both a horrifying but also powerfully positive experience that you were able to get to the right doctor at the right time and get diagnosed relatively quickly. How did you turn this experience now that you have been diagnosed with migraine, you develop chronic migraine. How did you take that experience and all the negative from that and turn it to a positive by becoming an advocate?

Michelle Tracy  03:34

At my worst I was having attacks pretty much every day, symptoms pretty much 24/7. And I got really frustrated because I had been really active as a preschool teacher and in different theater and singing productions around my town. And all of a sudden, I found myself just laying in the dark, a lot of the time. Felt really lonely, it felt really isolating. And one thing that I’ve always loved to do is write and so I thought, “I’m going to write about this. And I’m just going to put it out there and see what happens.” And so I did that. I went back and I laid down and got up like eight hours later. And there were a bunch of comments and messages from people saying, “This really helped me identify with this,” or having additional questions about what I wrote. And I thought, wow, even while I’m asleep in bed and like very sick, I can be helping other people at the same time with my writing. And that gave me renewed purpose for what I was going to do because I wanted to turn the suffering into something and we do have to accept that a certain amount of suffering comes with living our lives, but I really wanted to take it and do something with it and I felt like writing and speaking were things that I could bring to the table. And so that’s where I started.

Joe Coe  05:05

So powerful. And that’s how I first met you, at a writing and blogging summit with advocates probably six or seven years ago. And we’ve stayed in touch since. So that brought us together. Something that inspires me that you do on social media is when things are rough for you, you put out the bat signal for support or encouragement or just, you know, pictures of animals, whatever works to make you and others feel supported. Why did you start doing that? And how has it been talking about mental health and needing community and support for you, during this migraine process?

Michelle Tracy  05:42

I love this question, I have a very dear friend named May and she was a teacher at the same time I was and she knew me slightly before my diagnosis of migraine, and then she’s known me since then. And she’s actually the one who brought up the idea one day of the bat signal, saying, you know, “We don’t talk enough sometimes about when things are difficult in our lives, or when we need help. So we’ll just put out this picture of the bat signal. And all of the superheroes in our life can swoop in and help us and then we’ll do the same when we see their bat signal.” And I found that to be just such a pure and kind and authentic, so very May, concept, I loved it. And when I saw it, I was having a hard time. So I figured, you know, I’ll throw it up there and see what happens. And the response to it was incredible. People loved it. There were so many comments, not only supporting me, but saying, “Thank you for giving me permission to do this, permission to ask for help or support, permission to share just as much as I want to of what’s going on without having to tell everyone and still be able to ask for help.” There have been people since then, who have shared the bat signal on their own. And I always try to find it when they do but social media, you know, there are evils of social media, of course. And then there are these truly wonderful things where you can connect with people all over the world in different ways and on different things. And that just sort of showed me the best of social media. You know, I think that mental health is really inseparable in some ways from migraine, and especially chronic migraine. Because for me, it was nearly impossible not to have some anxiety or some depression or different things about what was happening. And I know there’s a lot of debate about, you know, which came first, is it migraine or depression or anxiety. And for me, it was pretty clear cut. I already had Generalized Anxiety Disorder, obsessive compulsive disorder and panic disorder well prior to my life with migraine, and then depression came in the year that followed my diagnosis and sort of the explosion of chronic migraine into my life. You know, I see a therapist weekly, I participate in something called dialectical behavior therapy, or DBT, which is a skills based program. So when you’re in DBT, you go through a skills group, and it’s a group of about 10 to 12 people. And you’re taught these different skills like mindfulness, distress tolerance, emotion regulation, interpersonal effectiveness, things like that. And then you have individual sessions with your therapist. And I have found that particular modality of treatment, DBT, to be particularly helpful for me with migraine. And I think that’s part of why I talk about it so much because it didn’t get rid of migraine, but it certainly was able to help me deal with what was going on.

Joe Coe  09:15

All of this is so important. And thank you for being so open. And that’s why I love the bat signal. I haven’t had the courage to use it, but I’ve definitely participated in yours. I want to know, as a follow up, how long did it take you to find a therapist or modality that worked for you?

Michelle Tracy  09:33

So this is a great question. I started seeing a child psychiatrist actually when I was 13 years old, and I sort of went to a bunch of different therapists for a while trying to find one that I really connected with. Because I think it’s it’s really important to feel like you can trust and open up to whomever you’re going to be sharing your life with in a therapeutic setting. And so it wasn’t really until about, I’m gonna say seven years ago, maybe a little bit longer than that, that I found DBT. And I found my previous therapist who’s moved on to do other things, and my current therapist. So it took me a really long time and a lot of effort going from person to person and giving them a chance. I didn’t just go for one visit, and then decide that they weren’t it. I really tried to build a relationship. And when I found DBT, and I found these two therapists, it was instantaneous, the connection. My first session with Tom, who was my first DBT therapist, I went in, I knew sort of the routine where you go in and you sort of give them a synopsis of what’s going on in your life. I was incredibly sick, I was in so much pain, physically and emotionally. And at the end of the story about migraine and everything that was going on, he just looked at me and went, “Wow, that sucks.” And I just crumbled, because he wasn’t trying to fix me, he wasn’t trying to tell me to buck up or look on the bright side, or here’s what we can do about it. He was just like, “This is this is lousy,” and I needed that piece of validation more than I realized. And it really opens a whole new world of mental health for me and therapy for me. After hearing that it was just like a weight was lifted off my shoulders.

Joe Coe  11:47

For many with migraine, they may be hesitant about speaking to a therapist. I asked Dr. McAlister about how different modalities of psychotherapy could be beneficial for migraine patients.

Peter McAllister, M.D.  11:58

We can start by saying that migraine is a genetically inherited medical condition as quote real as any other medical condition. But having said that, like a number of other medical conditions, it can be worse by stressors, internal and external. So I find psychotherapy invaluable for people who have a trigger or triggers that respond to psychotherapy. So if someone has anxiety, depression, and migraine, post traumatic stress disorder, and migraine, any number of those, we have our psychotherapist work with them on mindfulness and meditation, and other modalities, and it has often a profound effect as good or better than most of the medications we use.

Joe Coe  12:45

Yeah, it’s powerful when someone outside of our world can see and acknowledge that, you know, it’s not fair. And it’s messed up. And we don’t hear that a lot. So I could definitely see how that could be a transformative moment. I want to dig a little deeper, which I say a lot on the show, about the process to find a therapist. And I think that that’s something that a lot of us don’t really take into consideration. And we’re told go to therapy, you’ll feel better, when in fact, we’re not told you have to really find the right one, and they have to be good for you. So it’s less of a question more of an observation, that I’m glad that you did that work and that you’re sharing that here, because a therapist that works for me isn’t necessarily going to work for you, or a modality that works for me isn’t going to work for you and vice versa. And I think we can’t approach our wellness, and our chronic disease with a cookie cutter one size approach. I know from knowing you that at one point in your life, you weren’t well managed with migraine, and now you are. How has newer medications really impacted your life and what is that done for you?

Michelle Tracy  14:07

I have been living with migraines since August of 2004. So quite quite a while. I think actually I was I had some childhood versions of it, but we didn’t recognize it at the time. But I was really unmanaged almost completely until 2018. So like 14 years of just trying to cobble together whatever we could to keep me out of the ER because I vomit so much with my attacks that at a certain point you have to go and get something to stop the vomiting. And so I had tried so many things and was honestly losing a little bit of hope. But my headache specialist and my primary care physician who are incredible. They’re the leaders of what I call my Dream Team, they encouraged me to try one of the new injectable medications. And I was told, you know, “This is preventative medication, it’s not necessarily going to break the cycle that you’re in, you know, be cautiously optimistic about it.” And so I started using the monthly injectable. And I went from, you know, attacks every day to about seven days a month. And then like two to four days a month, which was something I had never allowed myself to dream of. I used to say to myself, “If I can get it to the point where I only have to go to the emergency room, once a week, I will be so grateful,” like I prayed for that. And so having two to four attacks per month, it’s wonderful. And it’s also really bizarre. And when it first happened, I didn’t really know what to do with myself. And I had a lot of I refer to it, I may not be using the correct term. But sort of survivor’s guilt, I felt like I didn’t deserve to be the one who had the medication work for them. I had, you know, great friends who have chronic migraine who have jobs or who have kids, or who have partners, or, you know, all different kinds of things. And I just didn’t feel like I deserved it. And I also wanted to be very careful about not shoving it in other people’s faces, because I know that when I was at my sickest, and there were other people who would be like, “This works. And this works.” Of course, there was a part of me that was like, I’m so glad that works. And then there was another part of me that’s like, why not me? Like, why can’t I have this, and then there was a third piece to it, which is that my form of OCD makes me a little bit superstitious. And that coupled with anxiety made me not want to say anything out loud, about what was happening, because I didn’t want to jinx it, so to speak. And so it took me a while to really talk about it. I got very actually depressed right after it started working because of all of those things together. Especially because everyone around me was like, “You’re fixed now. So what are you going to do, like, you’re going to go back to school, you’re going to do this, you go when you’re gonna get married?” And it was just like, I don’t know, when the other shoe is gonna drop. I don’t want to disappoint all these people. I’m also not fixed because I wasn’t broken. But also like the treatment isn’t a cure for me, I do still get attacks each month. And so it was very overwhelming and scary. But I’m also really grateful for the things that it has allowed me to do that I thought I would never do again, like sing and perform with a choir or get a poem published in a book or different things like that. So it’s been a wild roller coaster.

Joe Coe  18:18

So appreciate you sharing all of this. Particularly something that resonated with me listening to your story is, I also have responded really well to new treatments. And I wasn’t very well managed, at least now I know in retrospect, that I wasn’t well managed on other treatments, because it’s not normal to have a headache every day. I say that to everyone. I’m like if you’re having a headache every day, there’s something wrong. It’s not normal. I thought it was normal that people just had a headache every day. So when I started to have things that responded really well, I too, and I think it’s because we’re both very caring people, I didn’t want to hurt anyone by sharing that it helped me, because I know that there are so many people struggling and I heard you say a very similar thing to that. And I think as advocates, that’s a line that we have to balance, like sharing our personal experience also knowing that it’s our personal experience and others might not have it. Others might have zero headaches from treatments too, so it can go in the other direction. But it’s definitely something I’ve grappled with in sharing my story, my wellness journey, you know, trying different things, both pharmacological and non pharmacological, to manage, you know, this disease. So really important and impactful that you shared that. I want to know how it felt to be able to sing again, in your choir.

Michelle Tracy  19:43

It was a really emotional, really incredible experience for me. My dad’s a singer and a musician. My mom’s always singing, my brothers playing guitar. I come from a very musical family and so I I’ve been singing since I could talk, essentially. And, you know, in high school and early college, I was involved in musical theater and choir and different things where I was singing every day. And then all of a sudden, there was this decade and a half, where if I was able to sing, it was sort of like very rarely and like sometimes in my room, kind of thing. It wasn’t the performing, I feel most at home on stage, which I know is not the case for a lot of people. But it was early August of 2019, when I got to sing, and it was a Motown inspired program with our local rock chorus, Rock Voices. I had a solo in the song You Can’t Hurry Love, which is an amazing song that I love. For our concerts, we’re supposed to wear all black, but we can have a splash of color. And my splash of color was, I both deeply regret and deeply do not regret my choice of these entirely too high spiky purple stiletto heels, which looked incredible, felt horrendous. I will never wear them again. But that was my homage sort of to migraine and our community and saying, “I’ve been through this, and I’m here now.” And I really wanted to, like I said, give a nod with the purple color to the migraine community because they were all so supportive, and so kind when seeing the pictures and the videos, and it was just really special.

Joe Coe  21:47

I love that. And for those that don’t know, purple is the color that the migraine community uses to raise awareness about the disease. I feel like I would be missing an opportunity and really be upset if I didn’t ask how Benson is doing.

Michelle Tracy  22:02

He is fantastic. He is at doggy daycare right now. Which is why you don’t hear him in the background. Because like his mama, he is very vocal at all times. But he is an English bulldog. And he’s a little bit over 18 months. And I had never had a dog before. When I was younger, my parents didn’t, you know, weren’t really interested in having one at that time. And then I was so sick, that I couldn’t really care for one. And so having Benson come into my life, and I’m not saying of course that people with migraine can’t have pets. I don’t mean that at all. I just know that for me raising a puppy took a lot and continues to take a lot of time and effort and being alert and aware and so Benson’s a dream come true for me really. It’s something that I’ve always wanted. He’s perfect. And I get him involved in the advocacy things. You’ll see him with Miles for Migraine tee shirts on or you know shades for Shades for Migraine, different things. He loves people and he loves getting involved. So I’m hoping that he’ll get to be at something in person someday, because people are big fans of Benson.

Joe Coe  23:25

I am definitely in that camp. And I love hearing how really pushing and not settling brought you to a place where you’re singing now and finding joy. And you have Benson, who I read a review he gave of Talking Head Pain, it was very nice. So thank you. And it’s just amazing. And the work that you’ve done your advocacy, how you continue while you’re well, or doing better, to do this work. A lot of people will be like, “Alright, I’m gonna go about my life and saying and do all the things that bring me joy,” and forget about the folks that are still struggling. And I really admire and respect that you are sticking with it and continuing to educate, putting out the bat signal, supporting others and being a voice for people that that need it. So I want to end this with any advice you would give to fellow people living with migraine.

Michelle Tracy  24:25

I want to tell you, if I can speak directly to you, the you that is listening to this and Joe to of course, that you’re not a burden. You’re not alone. Your pain is real and it is valid. And it’s so important to be kind with yourself on the days that are the most difficult. And if you can remain cautiously optimistic, even if it’s just the tiniest part of you. I got so close to losing hope right before I found something that was helpful for me. And I think about what would have happened if I hadn’t continued pursuing things. And so I just hope that as so many new things come down the pike, and as we learn so many new things about what migraine is, and how it shows up, that you can keep hope alive and know that you are loved and you are needed in this world. And it wouldn’t be the same without you. You have specific gifts to bring to the world. And I am really grateful to be part of a community of so many incredible people who are fighting back against this disease. And I know it’s really difficult and I see you and I hear you and I love you.

Joe Coe  25:57

Thank you for that from both me and our community. My suspicion is right, I do feel a little bit better after this conversation than before. So I thank you for your energy and time and all that you do. Thank you for being on Talking Head Pain today.

Michelle Tracy  26:16

Thanks so much for having me.

Joe Coe  26:20

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time. This season of Talking Head Pain was made possible with support from Amgen, a sponsor of the Global Healthy Living Foundation.

Narrator  26:43

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.