Shades for Migraine Awareness, Headache Disparities and Expanding Access to Life-Changing Medications





Today is Shades for Migraine Day! It’s part of Migraine and Headache Awareness Month (#MHAM2020) to raise awareness about living with migraine. Post your photo on social media with the hashtag #shadesformigraune and challenge 3 friends!

I wanted to talk about some facts about migraine and headache disparities today. So, here are some quick facts:

  1. Migraine is a serious neurological disease. It’s not “just a headache.” 
  2. Migraine is the 3rd most prevalent illness in the world and the 6th most disabling. 
  3. There is a serious lack of availability in specialists for headache disorders, with only about 500 certified headache specialists in the U.S and 40 million sufferers. The U.S. has less than 1/6th of the number of doctors that we need, which is why organizations like the Headache and Migraine Policy Forum and Alliance for Headache Disorders Advocacy and other organizations are advocating for increased federal funding for headache fellowships to end the shortage and increase access to care. 
  4. Racial disparities in headache treatment are widespread. In one study, 46% of African Americans were less likely than 72% of Caucasian Americans to receive treatment for migraine disorder in their primary health clinic, and less likely to be prescribed acute medications. I highly recommend reading Migraine Diva's recent post on disparities in headache diseases. We can and must do more to make sure that we address implicit bias in health care and in our daily lives. 
  5. While there are has been an increase in new migraine medications like CGRPs, access to these medications is far from equitable or accessible. Many insurers force patients to "fail" two treatments in one category (either preventative or acute. Usually, it can take months for patients to adequately "fail" the treatments, losing time, quality of life, and money, before new treatments will be covered. Sign this petition to urge insurers and government agencies that provide healthcare insurance to provide access to these drugs. 
  6. Educate those around you: Migraine is an invisible disease. Many people do not know how living with migraine affects your life. Take MHAM as a reason to talk with your friends, families, and coworkers about what migraine is and begin to break down stereotypes. Another great way to start the conversation is by watching the Out of My Head documentary, which is now streaming on Amazon. If you want to talk about how to have these conversations, feel free to send me a DM on Instagram or Facebook
I've had some time in the last couple of months to reflect on my experience with migraine. I've been living with migraines for 8 years at this point. I've thought about how much that my life has changed, but also about what I've been able to accomplish. By writing about my experiences, I've learned about how to talk to doctors, friends, bosses, and family about my disease and break down stereotypes in my own circles. I've become a patient advocate for migraine and headache disorders, bringing my story to Capitol Hill to discuss with lawmakers how they can better support the 40 million people in the U.S. that live with headache disorders. I've also been working on the policy side as well. COVID-19 has changed the way healthcare is delivered. Migraine is one of the disease that would greatly benefit from increased telehealth capacity because of the lack of qualified specialists. Telehealth allows patients to see specialists and neurologists from the comfort of their own home, which is extremely important given the challenges that people with migraine face with travel. It is exciting to be working on the forefront of these issues as I am working to blend my advocacy with policy. 

Migraine and Headache Awareness Month is always one of my favorite months. It is amazing how much that one conversation can change things. We all start somewhere.  Advocacy is still advocacy, no matter how many people you reach. 


Life Update: Looking Ahead to Headache on the Hill 2020 By Reflecting on the Past



It's been a while since I've written a blog here. In the past year, I wrote a thesis that got high honors, graduated college, moved to a new city and started a full-time job, all while navigating my life with migraine disease. I've joined Migraine.com as a writer and Lyfebulb as a patient ambassador. This past week, I co-hosted #MigraineChat with Beth Morton (My Counterfactual Brain) and talked about migraine advocacy. Since Headache on the Hill (HOH) is next week, I wanted to take some time and reflect on how I got here, some formative experiences and how lucky I feel to have a voice in the migraine community.

I stumbled into migraine advocacy. I started this blog because I felt alone and isolated in my experience. I started writing about my life - the good, the bad, and the ugly of living with migraine disease. It truly is a way for me to process what I've gone through in my life. To learn that there is an amazing community of support out there for people living with migraine completely changed my life. Walking into Headache on the HIll for the first time in 2017, I was overcome with emotion being around people who understood the daily struggles and pain that I live with. For once in my life, I didn't have to pretend that I was okay.

Last year, I was in a meeting at HOH2019 and I got a migraine attack in the meeting. I was having trouble putting words together and was beginning to get upset that I was failing to do what I had traveled so far to do. But Kevin Lenaburg (CHAMP) picked up on what was going on and told the staffer, "This is an example of what happens during a debilitating migraine attack." Even though I was frustrated with myself, that moment made me realize the importance of education even more than I already knew. Migraine is a misunderstood condition. Not many people realize how debilitating and life-altering that it is. And while I was embarrassed, my very apparent disability helped prove our point in that meeting that for people living with migraine, your ability to function can disappear instantaneously with an attack.

In the past 4 and a half years, I've tried to change the narrative and stigma in my daily life surrounding migraine. Looking back at three years of advocacy, participating in workshops, writing online and having discussions with people, I am always surprised when people outside of the migraine community tell me that I am inspirational and have helped them understand a bit more what it's like to live with migraine.

So much of my life has been defined by the negative experiences I've had. The times that people fail to understand the daily level of pain that I go through because they can't see it, and I "don't look sick," when others have flat out told me that I would never achieve anything because of my disability or can't have accommodations because they're not "fair" to other people or aren't included in my benefits. But I am not their negative perceptions. In fact, the people that live with migraine are some of the strongest and most resilient people that I know. We go every day living in excruciating pain and somehow, still are able to keep fighting through.

At the end of the day, our power comes when we speak up collectively. There are over 40 million people in the United States who live with migraine. Many of us have comorbid disorders or live with other pain syndromes. Not everyone will understand what we go through, but if we continue to lift each other up, we will get there.

I took a break from blogging because I had to figure out who I am and what I am doing. I needed to adjust to working in a full-time job, navigate migraine days at work, and the emotional and physical toll that comes with those experiences. Furthermore, I felt embarrassed that I was having so much difficulty. I kept thinking, how can I be an advocate when I'm not even getting the accommodations that I need? How can I claim to be educating people when I feel like I'm failing to be transparent and educate people in my workplace?

I realized that I was doing myself a disservice by downplaying the severity of my migraines. My bosses knew that they hired someone with chronic migraine, but didn't know the full extent of my severity because I didn't share it with them. They still don't fully understand what I go through, but now I am trying my best to be more transparent with them about what I go through. If I keep pushing myself silently, they don't know what is going on. Even though I'm scared, I've begun making a concerted effort to tell them when I am not okay and when I do need to go home. I was telling them the other day about how there's a shortage of headache specialists in the U.S., which is why I've been having issues getting a new doctor in my new city. They were shocked, and couldn't believe that it's only 1.2 specialists per 100,000 people with migraine. That's a six-fold disparity.

Yet as people living with migraine, we know this. We know how hard it is to get an appointment, and how hard it is to get care when you actually need it. We know how hard it is to get insurance to cover our medications, to get bosses to give us reasonable accommodations that we are entitled to, and to live our lives in an environment full of triggers. But somehow, we still do it.

In 2020, I'm going to continue my advocacy work to amplify the experiences, struggles and policy barriers that people with migraine experience. In the past couple of months when I was not writing, I  was trying to figure out what I can contribute to the migraine community and where my voice fits in. I'm going to continue writing about my life, but I also want to start writing about the work I've been doing in health policy and the knowledge I have there. I believe that if I can provide some background on what's currently going on with Medicare and Medicaid, public options, telehealth and social determinants of health initiatives, I can help some of you understand the fractured system that we live in a bit better. If this is something of interest to you or you'd like to discuss a specific topic,  please reach out to me through email or on social media.

I'm excited for Headache on the Hill 2020 next week as well. Let me know if you're going to be there! I'll write a blog after talking about our ask and my experiences.

Until then,
Ellie

The Struggles of Writing an Undergraduate Thesis with a Chronic Illness



Yesterday, I tweeted about how writing a thesis with chronic migraine has been one of the most difficult things that I've done. It got an outpouring of love and it just so happened to be on a day that I finished the first draft of my body chapters. I was already feeling good, and I'm a month out from my final deadline. But it hasn't been like this for the whole process. I feel like I don't read enough about young adults with chronic illness going through school/university, so I thought that I'd spend a bit of time writing down my own experiences over the past year.

My thesis process started a year ago when I applied for a grant to do my research. I'm writing about the development of pain management as a medical specialty, and how the physician organizations that were created within the specialty became advocacy groups that influenced public policy in the 1990s and 2000s. It's a deeply personal project for me, as the first doctor who took me seriously was a pain management specialist. In essence, this is a look at how the pain problem (including the rise of the opioid crisis) came to be in the United States. 

There's been a lot of emotions that have gone into this project. Writing a thesis is not an easy process, even for anyone who is able-bodied. Throw in a debilitating chronic illness and anxiety, and it makes a hard process even harder. 

One of the main issues that I keep running into is completing the deadlines that I set for myself. This is applicable to anything outside of a thesis, either in work or in school, but I've been feeling it particularly often with this. I'll say that I'll want to write 10 pages by the end of the week, but then get hit with pain at some point and have to make up my classwork or completely lose a couple days. Then I would get upset with myself that I couldn't hit that deadline, which was self-imposed, and if I couldn't even finish that, how could I complete my thesis? 

It's thinking like this that would lead me to feel like I was failing, that everyone around me was hitting their deadlines and was on track, but somehow I wasn't capable of doing this project. Which, quite frankly, is bullshit. 

Just because I have down days, which I will always have, does not mean that I am not capable of doing what I put my mind to. Like everything else I've done in college, I just needed to do it at my own pace. So what does that look like? It means that I need to set realistic goals for myself, taking into account that I will have great days where I do everything that I set out to do and more, and I'll have bad days, where the best that I can do is get up and get out of bed. If I defined myself by my down days, I would feel defeated and incapable, which I did for a while. There have been so many days that I've sobbed on the phone to my parents, crying about how I'm behind and why am I even doing this if my brain won't work? 

The reality is that my thesis is as much about my mentality and belief in myself as it is about the writing and the work that goes into it. I need to be kind to myself and understand what I need to work well when I am feeling okay to do so. I can't force myself to work with extreme pain. When my brain isn't working, it doesn't help to get upset at myself. I can only do what my body allows me to, so it's better to take the time to rest and recover than it is to push myself and put out mediocre work, or even worse, gibberish. Just because I am disabled does not mean that I cannot do this. I am passionate about my work, and through this whole process, I've come to know SO much about this topic. I mean, if you ask me a question, I promise you that I will spend hours answering it and discussing the evidence with you. My inability to work on some days is NOT connected to my passion or my ability to finish the project in the long run. It's just another fact of my life. I am a young, disabled academic. I can't work in the same way that my able-bodied friends can. And that's okay. 

A main theme of my thesis is legitimacy. Whose pain was considered real? Whose pain deserved to be treated? As we all know, this is still an issue that many people with chronic illness and chronic pain deal with today. In a way, writing about these different theories has made me think about my own medical traumas where my pain has been ignored or dismissed. It's been difficult to work through my own history with chronic pain as I write about the ways that chronic pain has been understood historically. For a long time, pain was seen as either somatic or psychogenic (body or mind), and was theorized that it was impossible to be both. Now, there's the widespread idea that chronic pain is connected to both the mind and the body, not one or the other. But I've met people and doctors who have tried to convince me that my pain was a result of stress and anxiety, that it was somehow me that was creating my chronic health problems. On the other side of that is illness-splaining, where people think they know what treatments will work for me without bothering to ask what I've tried. One funny letter from the 1970s I came across in the archive I researched at recommended fire walking as a modality for chronic pain relief. Fire walking. As in walking across hot coals, barefoot. To relieve pain. Yeah, these type of "recommendations" for pain have been going on for a very long time. 

At the end of the day, we are the ones who know the most about ourselves and what we need to succeed. Whether the task is completing an assignment, cleaning our rooms, or writing a senior thesis (or master's or Ph.D dissertation), we are the only people who know what we are feeling in our bodies and how to plan to succeed in our goals. The biggest part of what I've learned throughout this whole process is that I need to take it a day at a time. Every day provides a new opportunity for me, either to learn to treat myself more kindly if I'm in pain or to write about a topic that I love, even if I don't do as much as I want to. Anything that I do is good enough. Whether I write one sentence or five pages, whatever I am able to produce is something to celebrate. I've started telling myself that every day, and even though it doesn't seem like a lot, that extra bit of confidence helps me a lot. 

On April 16th, I'm going to hand in my thesis. It may not be perfect, but I'm going to be proud of it no matter what. Because anything that I do and complete is something to celebrate. Repeat after me: I am capable. I am disabled. And I can do this. 


P.S. I'm partnering with the Migraine World Summit to promote this great informational (free) online event happening between March 20-28, 2019.

Join more than 100,000 new and returning attendees and tune in to 32 NEW interviews to find the answers to help better manage migraine and chronic headache. Questions answered include:
  • What new treatments are available or coming soon?
  • What can I learn from successful patient case studies?
  • What new non-medicinal alternatives are recently available?
  • How can I break refractory chronic migraine?
  • When should I get a scan for my headache condition?
  • How are neck pain and migraine related?
  • How important are sleep and exercise really for those with migraine?
  • Are supplements or vitamins worth considering?
  • What are some common drug interactions and side effects we should know about?
  • What do I need to know about hemiplegic and vestibular migraine?
  • How important is diet for migraine and headache?
  • How can I interpret migraine research?
The World Summit brings together leading experts and is an excellent way to learn more about current migraine research related to living and treating migraine. I'm going to be tuning in too! 

Claim your FREE ticket now at the following link:



Changing my Life with the Push of A Button: My Experience with Aimovig


In June of 2018, I took my first dose of Aimovig, one of the new CGRP medications. I livestreamed on facebook about taking my first dose, posted about how excited I was to try it and then haven't talked about it since. I've always been one of those unlucky people with medications where it either has terrible side effects or it works for a bit and then isn't effective anymore. I was excited to try Aimovig, but also completely terrified. What would happen if it didn't work? Even more terrifying, what would happen if it DID work?

The injection itself was one of the best autoinjectors that I've ever tried. I mean, I've tried the Sumavil Dosepro, the generic Imitrex shot with the autoinjector needle, and I regularly do DHE 45 injections. Suffice to say, I am no longer scared of needles because of my migraines, but I'm still a little wary of autoinjectors. To be honest, the buildup to my first dose was the worst part. I psyched myself out and had to facetime a friend (who's also an amazing patient advocate, you rock Sarah!) in order to calm myself down. I didn't have Ciara's "One-Two Step" playing like I did for my first DHE injection, but Sarah was expertly talking to me about how the anxiety before the shot is always the worst, and the best thing to do is just to do it and get it over with. So, after about 20 minutes of freaking out, the shot was over in 5 seconds. Minimal blood, almost no pain, I looked up and went, "wait.... that was it?" I couldn't believe that 1) I had just taken a dose of medication that could change my life and 2) it barely hurt and it was over so quickly.

It's now been 4 months on the 70 mg dose of Aimovig, and I'm living a fundamentally different life than I have for the past 6 years. I've seen a decrease of 4-5 major migraines each month, with a decrease in severity as well. My daily life is not as badly affected, in fact, I've had less brain fog and cognitive effects with my migraines after I started the Aimovig. This isn't to say that my migraines are gone completely, because trust me, I still get migraine brain a lot, but overall, I'm able to be a lot more functional than I was before. Furthermore, I'm able to be active again. I've written a lot over the years about my struggles with being able to exercise without triggering. Over the past 4 months, I've been able to slowly work up to doing spin classes, yoga for 80 minutes twice a week, and just generally be more active. I still get fatigued and have to ration my energy, but my threshold for activity is much higher.

I also stopped the Botox protocol when I started the Aimovig to see if it could balance out the withdrawal that I usually get around 10 weeks after the Botox injections. As a quick recap, the Botox protocol is a 31 injection migraine treatment that's injected into the head, neck, and shoulders. The Botox helped me for a while, but since I was starting the Aimovig, I proposed to my doctor that we use this past summer as a trial period and fully test it out. Much to my surprise, I didn't experience withdrawal from the Botox after starting the Aimovig, which was great!

I've been hesitant to write anything about my experience with Aimovig mostly because I was worried that publicizing my early success would somehow jinx how well that the Aimovig is working. I'm definitely lucky that I've been able to see such an improvement in my life, especially without any side effects! I take it every 28 days, and I've been able to set up delivery with a local pharmacy so it's convenient for me. I never thought that one shot a month would be able to make my life so different from what I had been used to. I still have migraine days, in fact, I had one yesterday, but those severe days are not happening as often, which means that I get to enjoy my life just a bit more.

Some people may be wondering why I'm so excited about a 4-5 day decrease in my migraines. What difference does it make? When you think about it, I usually spend over half of my month with a migraine, being a chronic sufferer means that I get 15+ migraines a month, usually around 18-20 days per month for me. Taking 4-5 days out from that of severe pain means that I'm looking at about 10-12 days, which is a huge difference.

Recently, Teva Pharmaceuticals and Eli Lilly released two other CGRP medications, Ajovy and Emgality, respectively. I'll do another post soon about the differences between these three drugs, but I do know that there are migraineurs who did not see changes on Aimovig who are going to give Ajovy and Emgality a chance.

I'm currently in my senior year of college and writing my thesis on the development of pain management as a medical specialty and the relationship between physician pain management organizations and U.S. pain legislation between 1970-2010. So, I do have a lot on my plate, but I'm looking forward to being able to see even more success with the Aimovig in the coming months.

Do you have questions about Aimovig, Ajovy, or Emgality? Let me know and I can answer them in my next post!




Breaking the Cycle

There's a state that migraineurs know that's an in-between of being functional and non-functional, where you're alive, but not completely there. You're able to complete small tasks and make small talk, but still are forgetful and can't fully focus. It's almost like there's a haze of brain fog surrounding you and no matter how much you rest and sleep and do everything that you're supposed to do, you don't get better.

For the past couple of weeks, I've been in between this half-functional state and full-blown migraine episodes. My to-do lists became an ever-growing mountain of tasks that no matter how hard I tried I couldn't do. My meds weren't fully stopping the migraines, and when they did stop, I'm not sure I actually recovered. I ended up having to make a choice this past week; do I get hospitalized or do I get an infusion and do the DHE 45 protocol of 3 shots a day for 5 days to break the cycle? It was a choice that I haven't had to make in almost two years. The last time I went to an ER for a migraine was the beginning of my freshman year in fall of 2015, and a couple months after that I had to do the DHE 45 protocol so I wouldn't be hospitalized. But this time was different. This time was terrifying because it reminded me of what I had gone through in high school. I was reminded of how helpless I actually was in dealing with my illness. I can be doing everything "right" and taking care of myself, but to a certain extent, that doesn't matter. I have a debilitating illness that affects my life and no matter what happens or how healthy I've been, episodes like this are a harsh reminder that there will always be times in my life where I can't control what my body is doing.

I ultimately decided to go in for the infusion and continue the DHE protocol at home. Infusions are never easy, and this was no exception. For the first time in my life, I was alone when I received the treatment. My parents were at home across the country, waiting to hear if I was being hospitalized and whether they should just get on a plane to be with me anyways. I always had someone be there with me to talk to me when the IV was placed, to reassure me when the pain of the medication hit my veins, telling me that everything would be okay and alright, even if it didn't feel like it now. I realized that it had been two years since I had an IV placed, my last one was in February of 2016 for my blood clot. When I got back from the infusion, I slept for 6 1/2 hours straight, not knowing if I would have to come back in a day for a nerve block if the infusion didn't work, and if that didn't work I would definitely have to be hospitalized. Luckily, I didn't. I opted for the DHE 45 protocol instead, because I'd much rather be giving myself shots than staying in the hospital for multiple days.

It's gotten easier to give myself the DHE shots over the years, but it's a special type of hell to have to do them 3 times a day. DHE is nothing short of a miracle drug for me, it has been the only abortive that has broken cycles for me. But it leaves bruises, the only physical element of my illness. It leaves tender spots so that by the end of the 5 days, I may be clear, from migraines but my legs are left sore and bruised. In a way, they are my battle scars. They are the only things that I have to prove that what I go through is real to the outside world, the only physical reminder. Yet bruises fade, just as these episodes do. At the end of the day, I will be okay. At least, that's what I've been telling myself. I'm finally clear but I am still very much dealing with the aftermath of this, both emotionally and physically. Throughout this whole ordeal I've been praying that I'll be able to access the new CRGP antibody drugs once they're released (hopefully in May and more on that in another post), so that maybe one day, I could have a healthy life. It's hard because I once again realized that I "looked" functional. I was taking a test when I got a full blown migraine and my proctor struggled to figure out what was wrong with me because I looked fine but was having trouble putting sentences together. I looked fine, but I wasn't.  And that's just the thing, I'm fine until I'm not. But those cycles of not being okay have been some of the most terrifying experiences of my life. When I am in those cycles, there is no foreseeable end. It is all pain, anxiety, and fear. When I'm out of these cycles, I can have some more clarity about what's going on, but it doesn't make the heightened emotions that I feel much better. These pangs of loneliness, shame, and fear come back when I am feeling okay, a lingering reminder of the times that I am not doing well.

I've been in love with songs that make feel like everything is okay when it feels like everything isn't. The song "Happiness is not a Place" by the Wind and the Wave really highlighted that for me. (Here's a link to my Uplifting Spotify playlist in case any of you were interested) The chorus goes;
"And don't you happiness is not a placeIt's the road you takeAnd who you choose to walk it withAnd the grass ain't always greener on the other sideIt's okayBut I wish it was easy like it soundsJust believe one dayAnd your walls start coming downTrust me things are gonna be alright"

To me, it's a reminder of how our struggle does not define us, but it shapes our lives. That no matter how difficult, frustrating, or painful things get, things will turn out okay. I say this for all of you as much as I do for myself. As for myself, I'm going to breathe during these next couple of weeks. I am grateful for the resilience of my body and my support systems. I'm going to breathe and start chipping away at my mountainous to-do list. Most importantly, I'm not going to give into those feelings that have been wearing down on me. I'm going to be looking towards the light at the end of the tunnel, because trust me, things are going to be alright.