Dr. Lowenstein: Hi and welcome to the Headache 360 Podcast. I’m your host, Dr. Adam Lowenstein. I have a really interesting guest today and a very unique one. Jamie Sanders is a blogger and I guess I personally think even more importantly, a patient and migraine advocate, an advocate for patients with migraine. She has been kind enough to to join me here today. Jamie, thank you very much for joining me.
Ms. 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. 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. From what I’ve seen, there’s just a lot of great information in a lot of resources that you have there.
Ms. 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 in my case having chronic migraine, it can 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 conversate with other people and share experiences with others that are the same as yours is very important.
Ms. Sanders: So that’s one of the reasons why I started the blog. Also I wanted it to be a place that could help educate because there’s such a huge stigma around migraine. I wanted to show exactly what migraine is, that it’s simply more than just a headache. It is a neurological disease, and it is very complicated, and can be very difficult to treat when it’s progressed to the stage of being chronic. It does have huge impacts on a person’s life. I wanted to chronicle that as a wife and a mother and how that affects me in the roles that I play in my daily life. 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 there’s so many Facebook forums that are kind of closed. It’s interesting to me that 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 fin your a blog. Whereas I think a lot of people are, are feeling isolated and the connections that people make, and what I see 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. You want to talk a little bit about how this came to pass? I mean when you have migraine yourself. So you wantt to talk a little bit about how that developed in your life?
Ms. Sanders: Sure. Migraine started in my life when I was a child. I was diagnosed when I was eight with, with migraine. 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 wants 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. At that point, I was episodic and for those listened to don’t know what episodic means, you have 14 or less days of migraine days per month.
Ms. Sanders: 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. If I’d missed a couple of days of school in a row over something that they thought was just a headache.
Ms. Sanders: 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 remain episodic and had maybe about two severe migraine attacks per month. But I still would have mild ones every couple of days throughout the month. When I was growing up though, my doctors told me, “Well you’ll outgrow them when you turn about 18.”
Ms. Sanders: So in my mind they had an expiration date. So I was like, “Well, I can get through this, through these years ’cause it’s not going to 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. I was like, “Well, my mother is not really dealing with them that much.” So that’s what I expected from myself as well.
Ms. Sanders: But that was not the case. When I was in my early 20s, I got married really young and had my kids young. So my last pregnancy, I was about 23. During my first trimester, I had a migraine the entire trimester. That was my first experience of having an intractable migraine. At that time, I did not know that that’s what it was. 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. The pain was pretty severe on a daily basis.
Ms. Sanders: So I thought it had to be something more serious than a migraine ’cause 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 there isn’t anything wrong and it’s just a migraine, then there is really not much I can do about it. And now I’m-
Dr. Lowenstein: That’s funny. I see that on Facebook all the time to the point that I actually did a blog on my website to say, “If you have a negative MRI, you need to be happy because brain tumors are not good.” Right?
Ms. Sanders: Right.
Dr. Lowenstein: But people are so frustrated that they’re just … All they want is a source. They want to find out why something like this is happening.
Ms. Sanders: Right.
Dr. Lowenstein: And you lose sight of the fact that you don’t have a tumor.
Ms. Sanders: I know.
Dr. Lowenstein: It’s a better thing.
Ms. Sanders: It is. It’s very warped thinking. I realized that what I’m thinking, and I’m like, you really don’t want a brain tumor. It’s tangible. That’s something that, you can see, okay, I know what it is. But with migraine, it’s so evasive and it’s so elusive. It’s just this thing that exists, but it’s has all this mystery around it. It’s just so difficult to treat. It’s disappointing when that’s all that it is because that means I’m going to have to deal with this. 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.
Ms. Sanders: They stopped being intractable once I got to my second and third trimester, but when I did get a migraine attack, they lasted a lot longer. I didn’t respond to medication like it used to. I was able to use over-the-counter medications to treat 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. By the time I was about 26, 27, that’s when I was diagnosed with chronic migraine. 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. At that point, my kids were still in elementary and middle school. So it was really, really, 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.
Ms. Sanders: So migraine has been very, a very impactful presence in my life. But it was through that journey that started me on this, this, this road to wanting to one, 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 healthcare, but it helps me elevate other people’s voices. Then I help them see that their voice does count and they have a say in their healthcare. And that’s very important for me.
Dr. Lowenstein: I would say one of the only, excuse me, the only things that are more complicated than migraine is the healthcare system. So you’re mixing pain and suffering to do this. So that’s great. I’m glad you’re doing it ’cause it is very … It is a very, very comminuted situation. Your blog, like how do you decide what to write about and what resources to utilize there?
Ms. Sanders: For the most part, my blog is like an online diary. I’m very transparent about what I’m experiencing. I don’t sugarcoat anything. I like it to be real, raw and very real. And for me, that’s the only way that’s going to help break down stigma is by showing the real face of what something is and how it truly affects someone. It’s just a documentation of how migraine shows up in my life, how I approach it, how it affects me emotionally.
Ms. Sanders: 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. It also plays a role in what treatments I use and how integrative I am with, with the approach to my treatments. So I’m very open and transparent about those things and how I could just be having a … Sometimes I just feel really, really, really defeated about migraine and my treatments. I’m going to talk about that. It’s okay to have those feelings, and we can’t always be a 100% positive and gung-ho all the time.
Ms. Sanders: It’s okay to have those days where you just don’t have that much of a fight in you. 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. 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 sweat pants, and go sit on the front porch and drink a cup of coffee as opposed to staying in bed, that’s a huge accomplishment, and recognize that for yourself. So I try to put those little points in my blog as well.
Ms. Sanders: 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.
Ms. Sanders: All these organizations put out great information and great resources for migraine around policy, around insurance barriers, around access to treatments. 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 for people to have 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 going to say this lots of times and I’m not here to plug anything, but I think there are a lot of great resources on Jamie’s blog. So it’s the MigraineDiva.com and you’ll find there’s a lot of great stuff there. The personal aspect to your blog is great. But you’ve kind of evolved that into these different affiliations. I’m never really comfortable with this word, but you’ve become kind of an influencer in both socially but also like it sounds like actively for migraine, for migraine patients. How did that just develop immunity? How does that go from somebody putting a diary out on a blog to being that involved?
Ms. 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 you to participate in this event.” That happened to be an event at the Blog Her Conference in LA in 2016. Blog Her 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. There was a particular panel about migraine that I was asked to be a part of. That was just from them finding my blog online.
Dr. Lowenstein: Wow.
Ms. Sanders: I was like, wow, that even like surprised me and shocked me. That’s kind of how it all started. That started the exposure for me and then getting asked to participate in a blogger summit. That brought me in the room with other people who really liked how I spoke and the things that I said, and that brought in more opportunities for me.
Ms. Sanders: So it happened very organically and there was never a plan for me, but I’m very grateful for it in 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. It’s just become such an extraordinary journey for me, and one that just keeps evolving. 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.
Ms. Sanders: 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 awareness to other areas and other communities of people that we’re not even considering.
Ms. Sanders: Usually when we speak about migraine and 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’ve got migrains as well, so I can see both sides of this whole story. But as a migraine surgeon myself, managing the insurance world as a provider is as painful as it is from a consumer. I’m in California and Blue Cross and Blue Shield California just … I can almost just recite what the letter is going to say before I open it becaus we never get coverage.
Dr. Lowenstein: It’s very frustrating ’cause 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, what you’re doing. I wish I had had more local resources like this. ‘Cause again, I’m in California, and you’re outside of my hometown in DC, on the East coast. I can’t say enough great things about the stuff that you’re doing. That’s fantastic. On 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?
Ms. Sanders: okay. So the 50-State Network is a grassroots organization that was put together by the Global Healthy Living Foundation. 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 nonmedical switching or failed 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 it’s something certainly well-needed. You mentioned the CHAMP.
Ms. Sanders: Yes.
Dr. Lowenstein: You want to talk a little bit more about that?
Ms. 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 essential 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 Chase for Migraine that happen every June that the Association of Migraine Disorders puts together, things like Headache on the Hill that happens every February.
Ms. Sanders: That lobby event that happens that happens in DC. It’s just a central place where 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 encountered that way. There is a great language and image guide. Language is very important, what language we use when talking about headache and migraine and cluster, to help de-stigmatize it, and the imagery that we use is very important as well.
Ms. Sanders: They have a great resource there that is very helpful not just to patients and providers but also to media. So there’s a great wealth of information there. It’s shared information amongst organizations, so it’s a really, 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: Great. And again, there’s all these things that we’re talking about. There are links from the MigraineDiva.com a web page too. There other affiliations or I know you actually do some writing for a Migraine.com, is that right?
Ms. Sanders: Yes, that’s correct. I do some writing for Migraine.com. I also write for Healthline media with their To Have a 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. Some of it is more technical writing. Some of it is a more personal aspect on how migraine affects myself. Like 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. So you’ll find all that on my blog as well.
Dr. Lowenstein: That’s fantastic. If you go to her blog and click on the resources button, there’s like years of information consumption available. It’s amazing. What do you see as the next steps in you evolution as a, I don’t know, not necessarily as a migraine sufferer. It’s rare that somebody is going to 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. What’s next for influencing and advocacy? What would you like to see happen?
Ms. 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 healthcare. 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.
Ms. Sanders: 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. 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.
Ms. Sanders: 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 health, 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 up in the conversation.
Dr. Lowenstein: There is so much comorbidity, as we say, with migraine. 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. We were talking about medications and how people just think that, okay, you’re going to be put on an antidepressant because it must have something to do with the actual migraine itself.
Dr. Lowenstein: But in fact, a lot of patients have depression, anxiety as part of their symptom complex for migraines. It’s a circular event where 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 porch and the things that you’re talking about.
Dr. Lowenstein: I think a lot of those cycles are not adequately broken. Like you’re talking about, it moves into a social commentary on forgotten communities. Certainly you don’t have access, you’re going to be kind of trapped in this cycle in a much more severe way than people who do have access to more specialized care.
Ms. Sanders: Exactly. Also people’s cultures play a role in how they approach their pain and their suffering. That’s an important aspect for me as well, growing up as not just a black woman, but a daughter of an immigrant from the West Indies. They both, American black people see pain differently than West Indians do.
Ms. Sanders: So there was kind of a clash on how do you treat that and how do you deal with mental illness. So it was 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 are we going to have the right conversation with certain groups of people. So that they fully understand what it is that they’re really experiencing and the best ways to approach it and treat it. 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.
Ms. Sanders: Acupuncture. On top of like my Botox, and nerve blocks, and massage therapy, and I use essential oils, and CBD salves, and magnesium rubs. I use a lot of things. I use herbal teas, watch what I eat, like really looking at it as treating the whole body instead of just trying to put a bandaid on a bleeding artery kind of aspect, is really important. That’s another piece that a lot of times people don’t see, they just want to take a pill and make everything go away. Well, no.
Ms. Sanders: We need to treat the whole body and make sure everything is in unison because there are a lot of comorbidities, so comorbidities. 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 going to be more anxious. If they’re not being treated then you’re just going to fall deeper and deeper into this hole. So we need to treat them all concurrently and we need to treat them all holistically. I think that’s the better approach as opposed to just trying to use one modality.
Dr. Lowenstein: You can tell that somebody who’s got their finger on the pulse of culture, 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 if, Jamie, you grew up in Queens and my family is originally from Valley Stream. Certainly couldn’t hit hit a more hotbed of cultural differences there. So I applaud you on really being a aware of that and working towards that because I mean, we see that in, in my practice. Different ethnicities and just it doesn’t even have to be different ethnicity as it is just a different approach. People who were brought up in a manner where they’re paying close attention to their pain or their various different aspects of their health versus somebody who’s very stoic. Both of those people have a significant problem that we’re working to to make better, but have different personal approaches to, to their discomfort.
Ms. Sanders: Right.
Dr. Lowenstein: So that’s great. Well, 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 the MigraineDiva.com, such a wealth of information as well as a really great way to see that you’re not alone. I think you get 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 a happy situation even in the face of what can be a quite a painful symptom complex.
Dr. Lowenstein: So thanks. I wish you the best though going forward. We’ll continue to watch your blog and I appreciate your involvement.
Ms. Sanders: Thank you so much. I appreciate you having me on today and allowing me to share my story and my journey. I really do appreciate that.
Dr. Lowenstein: My pleasure. We’ll look for more great things from you. All right, thanks for listening, everybody.
Dr. Lowenstein: 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 suffers is to please remember to subscribe and rate our podcast. 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.
Dr. Lowenstein: 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 hear on the internet to broaden your knowledge, but consult with your physician before acting on any information that you hear on podcasts or see on YouTube or read anywhere on the internet.
Dr. Lowenstein: 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. 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.
