Headache 360- The Migraine Diva, The Migraine Advocate

Announcer: Welcome to the Headache 360 Podcast, a place to listen and learn about the diagnosis and treatment of chronic headache and migraine pain.

Dr. Lowenstein: Hi, and welcome to the Headache 360 Podcast. I’m your host, Dr. Adam Lowenstein, and I have a really interesting guest today, and a very unique one. Jamie Sanders is a blogger and a, I guess I personally think even more importantly, a patient and migraine advocate, an advocate for patients with migraine. And she has been kind enough to join me here today. And so Jamie, thank you very much for joining me.

Jamie Sanders: Thank you so much for having me on the show today.

Dr. Lowenstein: You have a I guess your primary outlet is the blog called the Migraine Diva, and that blog is you can fill in that which I don’t know, but let’s say it’s an award-winning blog, right? I mean you’ve gotten some kudos from the blogging community as well as the migraine community, and from what I’ve seen, there’s just a lot of great information and a lot of resources that you have there.

Jamie Sanders: Yes, I use my blog as a platform to reach out and connect with others in the headache and migraine community because having migraine, especially my case having chronic migraine, it could be very isolating spending so much time at home, in bed, in the dark, in your room. You’re not very social. So reaching out and being able to, you know, converse with other people and share experiences that with others that, you know, are the same as yours is very important. So that’s one of the reasons why I started the blog. And also I wanted it to be a place that could help educate because there’s such a huge stigma around migraine, and I wanted to show exactly what migraine is, that it’s simply more than just a headache, that it is it is a neurological disease, and it is very complicated and can be very difficult to treat when it’s very when it’s progressed to the stage of being chronic, and it does have huge impacts on a person’s life. And I wanted to chronicle that as a wife and a mother and how that affects me and the roles that I played in my daily life. And I just wanted to help break down those stereotypes and those stigmas behind it, and really put a face to what migraine is and help others feel validated in their own experiences and in their stories.

Dr. Lowenstein: I spend a good amount of time on Facebook and in the kind of there’s so many Facebook forums that are kind of closed. And it’s interesting to me that you’re you’ve got kind of the opposite. You’re very open, very accessible, and kind of easy to find. You can just do enough Googling to find your blog, whereas I think a lot of people are feeling isolated and the connections that people make and what I see in the in the Facebook community are just super helpful to sufferers who really feel that they’re alone. So I think that’s fantastic that you’re doing it. Do you want to talk a little bit about how you how this came to pass? I mean, when you have migraine yourself, and so you want to talk a little bit about how that developed in your life?

Jamie Sanders: Sure. Migraine started in my life when I was a child. I was diagnosed when I was eight with migraine, and it does run on my mother’s side. She did grow up with migraine herself, her father had migraine, so she recognized what my symptoms were, but she brought me into my pediatrician. She wanted to rule out that it wasn’t anything serious, but I was seen by a neurologist back then. This was like 1986, I want to say. And I was diagnosed with migraine and I was put on preventive medication, and at that point I was episodic. And for those listening that don’t know what episodic means, you have 14 or less days of migraine days per month. So I was still able to function, but it still impacted my daily life, it impacted school. I dealt with people who didn’t understand, my peers didn’t understand, teachers didn’t understand, you know, if I missed, you know, a couple of days of school in a row over something that they thought was just a headache. So there was a lot of just people just not understanding the severity of what I was dealing with. But for the most part, throughout going through my school age years, I remained episodic and have maybe about two severe migraine attacks per month, but I still would have mild ones every couple of days throughout the month. And when I was growing up though, my doctors told me, well, you’ll outgrow them when you turn about 18. So in my mind, they had an expiration date. So I was like, Well, I can get through this, you know, through these years because it’s not gonna affect me. And plus my mother really didn’t have that many migraine attacks. I didn’t see her suffer from them the way I was. So I was like, she was my example. It’s like, well, my mother’s not really dealing with them that much, so that’s what I expected from myself as well. But that was not the case. When I was in my early twenties, I got married really young and had my kids young. So my last pregnancy, I was about 23. And during my first trimester, I had a migraine the entire trimester. And that was my first experience of having an intractable migraine. And at that time I did not know that’s what it was, and my neurologist that I saw never called it that. So I didn’t know that it had a term, that it had a name. But that was the first time I had a migraine that lasted that long, and it was, you know, the pain was pretty severe on a daily basis. So I thought it had to be something more serious than a migraine because this was not normal for me. So I had an MRI done, and when it came back that everything was fine, I was kind of disappointed because I’m like, well, if it there isn’t anything wrong, then and it’s just a migraine, there’s really not much you can I can do about it. And now you know that’s funny.

Dr. Lowenstein: It’s I see that on Facebook all the time to the point that I actually did a blog on my website to say, you know, if you have a negative MRI, you need to be happy because brain tumors are not good, right? But people are so frustrated that they’re just all they want is a source, they want to decide, they want to find out why something like this is happening, right?, and you lose sight of the fact that you don’t have a tumor, you know.

Jamie Sanders: There’s it’s a better thing. It is, and it’s very warped thinking. And I, you know, I realize that when I’m thinking I’m like, you do you really don’t want a brain tumor, but it’s but you can that’s tangible. That’s something that you know you can see, you can, you know, okay, I know what it is, but with migraine, it’s so evasive and it’s so elusive. And it’s just this thing that exists, but it’s has all this, you know, mystery around it. And it’s just so difficult to treat. It’s disappointing when that’s all that it is, because that means I’m gonna have to deal with this and for the most part really not have the best options as far as treating my pain, especially as a pregnant woman. So I had just had to deal with it. But ever since I got through that first trimester, migraine was very different for me after that point. They stopped being intractable once I got through my second and third trimester. But when I did get a migraine attack, they lasted a lot longer and it didn’t respond to medication like it used to. I was able to use over-the-counter medications to treat, you know, acute migraine attacks. But they were becoming less responsive to that. So I had to start using prescription abortive medications and then eventually going on preventive medications because they just started to occur more frequently over the years. And by the time I was about 26, 27, that’s when I was diagnosed with chronic migraine. And about a year after that, I was diagnosed with new daily persistent headache and chronic daily headache. So I was in pain every single day. And at that point, my kids were still in elementary and middle school. So it was really, difficult trying to raise a family and manage a house, household, and be a wife and try to manage my pain, which was unrelenting and just not responding to what treatments I was applying to it. So migraine has been very a very impactful presence in my life. But it was through that journey that started me on this road to wanting to better myself and educate myself and to want to connect with others and that opened the door to this space of advocacy, which I’m very grateful for because it not only helps me advocate for myself when it comes to my health care, but it helps me elevate other people’s voices and help them see that their voice does count and they have a say in their health care, and that’s very important for me.

Dr. Lowenstein: That’s, yeah, it’s I would say one of the only excuse me, the only things that are more complicated than migraine is the healthcare system. So you sign you you’re mixing pain and suffering to do this, so that’s great. I’m glad you’re I’m glad you’re doing it because it is very it is a very, convoluted situation. Your blog, like how do you decide what to write about and what resources to utilize there?

Jamie Sanders: For the most part, my blog is like an online diary. So and I’m very transparent about what I’m experiencing. I don’t sugar coat anything. I like it to be real raw and very real. And, for me, that’s the only way that’s gonna help break down stigma is by showing the real face of what something is and how it truly affects someone. And so it’s just a documentation of how migraine shows up in my life, how I approach it, how it affects me emotionally. I also have depression and anxiety, so that plays a major part in how I see migraine, how I approach it, how I feel about it, how it makes me feel as a person. And it also plays a role in how and what treatments I use and how integrative I am with the approach to my to my treatments. So I’m very open and transparent about those things and how, you know, I could just be having a sometimes I just feel really, defeated about migraine and my treatments. And I’m gonna talk about that. And it’s okay to have those feelings and we can’t always be a hundred percent positive and gung-ho all the time, and it’s okay to have those days where you just don’t have that much of a fight in you, but it’s okay as long as you don’t lose that hope. That’s my main purpose, my main goal. It’s okay to have those days where you’re just having a bad day. It’s you know, that’s gonna happen. But it’s important to focus on the little things that you did accomplish because sometimes we can’t do those bigger tasks because it takes a toll on us. But if you manage to get up and brush your teeth and throw on some sweatpants and go sit on the front porch and drink a cup of coffee as opposed to staying in the bed, that’s a huge accomplishment and recognize that for yourself. So I try to, you know, put those little points in my blog as well. And then when it comes to resources, I work with a few organizations like the Coalition for Headache and Migraine Patients, Champ, the Global Healthy Living Foundation, the Society for Women’s Health Research, the Headache and Migraine Policy Forum. All these organizations put out great information and great resources for migraine around a policy, around insurance barriers, around access to treatments. And so when I get my hands on that information, I want to spread that and share that with whoever’s following my blog because it’s difficult to figure out, like you said, how to navigate the healthcare system. It is so complicated. So if you have a resource, a tool that can help you figure out how to get access to specific treatments that you may need to treat your migraine, or if you’ve been denied access to treatment and how you can appeal that decision with your insurer, who do you contact? That type of information is very important to for people to have at you know at their fingertips and be easily found. So that type of information is very important for me to have available on my blog.

Dr. Lowenstein: And again, just we’ll I’m gonna say this lots of times, and I’m not I there I’m not here to plug anything, but I really I think there are a lot of great resources on Jamie’s blog. And so it’s TheMigraineDiva.com and you’ll you will you’ll find a there’s a lot of great stuff there. And so the personal aspect to your blog, great, and but you’ve kind of evolved that into these different affiliations and you’ve never really comfortable with this word, but you become kind of an influencer in both socially but also I guess actively for migraine for migraine patients. How like how did that just develop? I mean you how does that go from somebody putting a diary out on a blog to being that involved?

Jamie Sanders: It’s very interesting. It just happened to come from an email from a company saying, Hey, we found your blog, we love it, and we love for you to participate in this event. And that happened to be an event at the BlogHer Conference in LA in 2016, and BlogHer has the largest women’s conference in the world. So it brings about all these women, bloggers who blog about lifestyle, family, health, what have you. And there was a particular panel about migraine that I was asked to be a part of, and that was that was just from them finding my blog online. And that was just like I was like, wow. That even like surprised me and shocked me. And that’s kind of how it all started, and that kind of started the exposure for me. And then getting asked to participate in blogger in a blogger summit, and that brought me in the room with other people who really liked how I spoke and the things that I said, and that it brought in more opportunities for me. So it happened very organically and it was never a plan for me. But I’m very grateful for it and the way that it transpired because it’s become a vessel for me, and it’s become a way for me to turn my pain into empowerment. It’s become a very focused thing. I can deal with my daily pain because it has a purpose. It really does have a purpose for me now because I get to do such great things because of my experience with pain. And it’s just become such a an extraordinary journey for me, and one that just keeps evolving. And I’m very grateful to have opportunities to be able to speak at conferences or at summits or at events where I can just really shine a light on the patient perspective and really shine a light on what it’s like living with migraine, especially as a woman of color. There aren’t that many representations of women that look like me when you think of migraine in the media. So it’s important for me to be that voice for people that live with migraine that aren’t represented. So not just women of color, but men, children, people that may not speak English as a first language, marginalized communities. It’s important for me to speak on that whenever I’m asked to speak anywhere. So I use this as an opportunity to help elevate the conversation and to broaden the conversation and to help enlighten and help try to bring you know, bring awareness to other areas and other communities of people that we’re not even considering. And usually when we speak about migraine in these particular events, we’re usually speaking about people who have insurance, people who are insured. But what about those who are under insured or not insured and their struggles and their lack of access to care? So these are all very important things for me. These are things that I speak about, things that I like to bring up and discuss and really try to have that conversation. So advocacy has really been a really awesome journey for me and one that I hope continues to grow.

Dr. Lowenstein: We need you not only from a patient, yeah. I I’ve got migraines as well, so I can see both sides of this whole story, but the you know, as a as a migraine surgeon myself, managing the insurance world as a provider is as painful as it is, you know, for from a consumer. And you know, we have I’m in California and Blue Cross and Blue Shield California just I can almost just recite what the letter’s gonna say before I open it, because it we never get we never get coverage. And so you know I can it’s very frustrating because we can help so many more people than we’re helping, but people just can’t navigate the insurance world and the insurance policies are just certainly not doing anything to help. So it’s better than great of what you’re doing. I wish I had more local resources like this. Because again, I’m in California and you’re outside of my hometown in DC on the East Coast, but it’s I really I can’t say enough great things about the stuff that you’re doing. That’s fantastic. Your blog, you have a couple of things that I’d love to get just a little more familiar with. Like what is a 50 State Network?

Jamie Sanders: Okay, so the 50 State Network is a grassroots organization that was put together by the Global Healthy Living Foundation, and it is across all disease states, but what they do is they take people who live with chronic pain, chronic illness, who are very interested in becoming advocates and provide free training, free conference calling, and utilize their stories and their experience to help advocate on the local, state, and sometimes in the federal level. So whether that’s Changing insurance policy, things like non-medical switching or fail first step therapy policies, things that negatively impact the patient and also the physician as well. It negatively impacts the physician-patient relationship.

Dr. Lowenstein: Well, that’s great. There’s plenty of things that negatively impact the physician-patient relationship. So that’s something certainly well needed. You mentioned the CHAMP. About that?

Jamie Sanders: Yes, so CHAMP is a organization that is a collection of like-minded organizations and patient opinion leaders that are striving to create resources and a central hub for patients and caregivers who live with migraine headache or cluster disease. So they have central access to up-to-date information, access to all events, things like the miles for migraine race walks that happen across the country, or events like Shades for Migraine that happen every June that the Association of Migraine Disorders puts together, things like Headache on the Hill that happens every February, that lobby event that happened that happens in DC. And it’s just a central place where you a patient or providers can go to get information, including guides to how to navigate your insurance and how to deal with any barriers you may receive or encounter that way. There is a great language and image guide. Language is very important with language we use when talking about headache and migraine and cluster to help destigmatize it. And the image imagery that we use is very important as well, and they have a great resource there that’s very helpful, not just to patients and providers, but also to media. So there’s a great wealth of information there, and it’s shared information amongst organizations. So it’s a really, great resource to go to. And that website is headachemigraine.org. I really recommend Champ as a great resource for anybody living with headache or migraine or cluster disease. So yeah, Champ is a great one.

Dr. Lowenstein: And again, there’s all these things that we’re talking about. There are links from TheMigraineDiva.com webpage too. What are there other affiliations or I know you actually do some writing for migraine.com, is that right?

Jamie Sanders: Yes, that’s correct. I do some writing for migraine.com. I also write for Health Line Media with their Teva Life Effects program. So you can find my writing there. I have links for all the articles that I write on my blog. I also write for New Life Outlook for their migraine section. Again, all the links for that are on my blog. So I some of it is more technical writing, some of it is a more personal aspect on how migraine affects myself. Like how do you how do you approach migraine with the upcoming school year? As a parent with migraine or if you have children with migraine. So topics similar to that, how to navigate migraine during the holidays, things like that, and best practices that I use and things that work for me. And so you’ll find all of that on my blog as well.

Dr. Lowenstein: Oh, that’s fantastic. You just if you if you go to her blog and click on the resources button, there’s like years of information consumption available. And it’s just it’s amazing. What do you see as the next steps in your evolution as a I don’t know, not necessarily as a migraine sufferer? It’s rare that somebody’s gonna say, gosh, I’m glad that person has migraines, but you people may be saying that about you because you’re providing such great information secondary to your personal experience. Are you, know, what’s next for influencing and advocacy and what would you like to see happen?

Jamie Sanders: Well I’m currently working on starting my own nonprofit, which would focus on people living in communities where there’s hardly any access to health care that and these are people that will be living with headache or migraine or cluster and also living with mental health issues. So people living in rural areas or people that are living in low-income areas, people of color, people in the LGBTQ communities, and people who don’t speak English as their first language. This is what I want to focus on because in my experience these are people that are forgotten about and not spoken about and not referenced to. And a lot of times these people just don’t have any access to any kind of specialist at all. And may only use community health centers. So I want to focus on how do we go into those communities and educate the health providers in those communities and help educate the people in those communities about their disease and how to live a more healthy life with their disease and give them better resources and access to providers and really help people in these areas that just aren’t being thought of and not spoken of in the conversation.

Dr. Lowenstein: And there is so much comorbidity, as we say, with migraine. Right. I one of my recent episodes was discussing things with a guy named Dr. Ansari, who’s the director of the headache clinic at University of California, San Diego, and we were just we were talking about medications and how you know people just think that okay, you’re gonna be put on an antidepressant because it must have something to do with the actual migraine itself. But in fact, you know, a lot of patients have depression, anxiety as part of their symptom complex for migraines, and it’s a it’s a circular event where you’re, you know, you’re you’ve got chronic pain, you’re depressed, you’re not doing anything to help things, you’re not getting up off the couch going to have coffee on the on the porch and the things that you’re talking about. And I think a lot of those cycles are not adequately broken. And that like you’re talking about, it moves into a social commentary on forgotten communities. And you know, that they’re certainly if you don’t have access, you’re gonna be kind of trapped in this cycle in a much more severe way than people who do have access to more specialized care.

Jamie Sanders: Exactly. And also people’s cultures play a role in how they approach their pain and their suffering. And that’s an important you know, aspect for me as well. Growing up as not just a black woman, but, you know, a daughter of an immigrant from the West Indies, they both, you know, American black people see pain differently than West Indians do. So there was kind of a clash and how do you treat that and how do you deal with mental illness. So it’s very important for me to keep that cultural aspect in mind and respect that, but be very delicate about how we approach different communities because not everybody’s going to see things the same way. So we need to know how do how are we gonna have the right conversation with certain groups of people, and so that they fully understand, you know, what it is that they’re, you know, really experiencing and the best ways to approach it and treat it. And it’s important for me because this works for me to be very integrative. I don’t rely simply just on medication, but behavioral health is very important. I have a pain psychologist, I use guided meditation, deep breathing, relaxation, acupuncture, on top of like my Botox and nerve blocks and massage therapy, and I use you know, essential oils and CBD salves and you know magnesium rubs. I use a lot of things. I use herbal teas, watch what I eat, like really looking at looking at it as treating the whole body instead of just trying to put a band-aid on a bleeding artery kind of aspect is really important and that’s another piece that you know a lot of times people don’t see. Like they just wanna take a pill and make and make everything go away. Well, no, we need to treat the whole body and make sure everything is in unison because there are a lot of comorbidity, so comorbidity, so we need to make sure that your mental health is being taken care of because there is this vicious cycle that goes on when you’re in pain constantly, then you’re going to be more in a depressed mood and you’re gonna be more anxious. And if they’re not being treated, then you’re just gonna fall deeper and deeper into this hole. So we need to treat them all concurrently and we need to treat them all holistically. And I think that’s a the better approach as opposed to just trying to use, you know, one modality.

Dr. Lowenstein: And this is you can tell that somebody who’s got their finger on the pulse of culture, because not only is she from near where I grew up, but she is originally from right around the corner from where my family is in New York. So I guess Jamie, you grew up in Queens, and my family’s originally from Valley Stream and certainly couldn’t hit a more hotbed of cultural differences there. So I applaud you on really being aware of that and working towards that because I mean we see that in my practice, you know, different ethnicities and just you know, it doesn’t even have to be different ethnicity, it’s it is just a different approach. People who’s who were brought up in a manner where they’re paying close attention to their pain or their you know various different aspects of their health versus you know somebody who’s very stoic. Both of those people have a significant problem that we’re working to make better, but have different personal approaches to their discomfort. Right. So that’s great. Well, I again I really thank you very much for taking the time to talk with me. Again, I would really suggest to anybody listening check out TheMigraineDiva.com. Such a wealth of information as well as a really great way to see that you’re not alone. And I think you got a bunch of resources not only for patients to feel better, but feel better about themselves and kind of work towards having a productive and happy situation, even in the face of what can be quite a painful symptom complex. So thanks. And again, I really I wish you the best going forward and we’ll continue to watch your blog, and I appreciate your involvement.

Jamie Sanders: Thank you so much. I appreciate you having me on today and allowing me to share my story and my journey, and I really do appreciate that.

Dr. Lowenstein: My pleasure. We’ll look for more great things from you. All right. Thanks for listening, everybody. Hey everybody, this is Dr. Lowenstein once again, and I have two last things to ask of you. Firstly, the thing you can do for fellow headache sufferers is to please remember to subscribe and rate our podcast. The more ratings and subscriptions that we get, the more visibility that we’ll get, and the more listeners will be able to find us, and the more help and information we’ll be able to provide the huge population of people who suffer from headache pain. Secondly, please remember that the treatment of headaches of all types is very individualized. The purpose of this podcast is not to give medical advice, so please use the information here on this podcast and elsewhere that you’re here on the internet to broaden your knowledge, but consult with your physician before acting on any information that you’re here on podcasts or see on YouTube or read anywhere on the internet. I, as a physician, don’t necessarily endorse the opinions or practices of my guests, and if you have particular questions that you’d like to consult with me directly about, please call our headache surgery center. Our phone number is 805-969-9004, or you can email us at info@headachesurgery.com and my staff will set up a consultation and we can discuss your specific case over the phone or in person. Our website is filled with information as well, and that is headachesurgery.com. Thanks and best wishes from all of us here at the Headache 360 Podcast.