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

5:48 PM chronicmigraineellie 8 Comments

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

5:10 PM chronicmigraineellie 4 Comments

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. 


Why Am I A Patient Advocate?

2:31 PM chronicmigraineellie 3 Comments

As I'm preparing for my second Headache on the Hill, I've been reflecting on how I got to the place where I am. Being a patient advocate is something that I never saw myself doing, especially when my health was at its worst. At the end of the day, being a patient advocate is about sharing your story. The more that I told my story to people in my life, and then to people that I met, the more I realized that my story and my experiences impact other people and how they think about migraine and chronic illness.

Most people know someone who has some type of chronic illness. In 2012, about half of all adults in the US, around 117 million people had one or more chronic health conditions, with one in four adults having two or more chronic health conditions, according to the CDC. Chronic illnesses affect everyone in some way, but our society still struggles to talk frankly about the realities of living and managing a chronic illness.

I've become pretty comfortable talking about my experiences and my illness, but it didn't start off that way. Starting this blog was extremely nervewracking, and in some ways, it was easier to sit behind a computer and write to a faceless, nameless crowd than it was to talk to someone in person. Whenever I would talk with anyone in person, I would start worrying about how they saw me. Would they judge me? Do they understand? Are they uncomfortable? Can they see that I'm in pain right now? I was so worried about what other people thought of me and my story that I forgot what actually mattered. By sharing my story, I am owning my story. It's not pretty. It's filled with fear, medical problems, and discomfort. But it's my story. It's my life, and no one else's, and to a certain extent, there is nothing that I can do to change that. Living with a chronic illness is not easy by any means, but by sharing my story, I am helping others find the strength to tell theirs.

There will always be someone who doesn't understand, who judges you, or who makes nasty comments. But I've found that when I tell my story, more often than not, the reaction is positive, even curious sometimes. I've become friends with people because we've bonded over our migraines and chronic illnesses. I've talked with family friends about their loved ones, with Uber drivers, with anyone who wants to talk with me about healthcare or their own medical stories. I've been surprised by how open that people are when you show a bit of your heart on your sleeve. Never, in a million years, did I expect to be sharing my experiences on the internet and being a part of #HOH2018 and lobbying for migraine and headache disorders. It all started with me, writing a post about my migraines on a blog that only my parents and a couple friends read. The main point is that advocacy doesn't have to be about writing articles or taking monumental efforts to do something big. Just talking with people, and taking the time to explain your story and listen to their questions and their own experiences can make a significant impact. I can't tell you how many times my friends and family have had conversations with other people and tell me that they were able to empathize and understand someone else's story (whether it was with migraine or some other chronic illness) because of the conversations that we had about my story. and experiences

I'm a patient advocate because I love helping people understand and learn about migraine and chronic illnesses. You can also be a patient advocate as well. It all starts with you sharing your story.

As always, have an amazing migraine-free week!


Putting Together The Dr. Jekyll and Mr. Hyde of My Migraine Identity

6:34 PM chronicmigraineellie 5 Comments

It's been a while since I've sat down and written a blog.  2017 was a monumental year for me in so many ways. To start off, I am a lot healthier and more active than I have been in the last 6 years. I participated in Headache on the Hill 2017, which was one of the most exciting and fulfilling experiences that I could have attended.  I'll be back this February for HOH 2018! This summer, I lived in Washington D.C. working full-time at a start-up healthcare company named Aledade Inc. at which I learned a lot about the business side of healthcare and accountable care organizations. I've started collaborating with other bloggers and migraine websites, which has been such a rewarding and amazing experience as well. 2017 felt almost like a dream, I was so surprised that I could actually have a job, live my life, and function with my migraines.

In some ways, I felt overwhelmed by this. Blogging about migraines and invisible illnesses has allowed me to be able to put into words the wide range of emotions that I've felt over the last 6 years. I cannot tell you how amazing it feels when someone tells me that they relate to what I write about, or that it's a bit easier to share their experiences with friends and family because of my articles. When I started this blog two years ago, I had no idea how much of an impact my words would have on other people. I am so grateful to all of you who have continued to read my blog and support me during some of the hardest times of my life. Over the past year, I've truly learned how to advocate for myself. At this point, I have learned what works for me and what doesn't. I know what I can and can't eat, what activities will drain my energy, and what is and is not too much for me to handle. I've taken this mindset into 2018, and it has already started with so many new opportunities that I never could have imagined would be available to me.

Part of the reason why I needed a break from blogging in 2017 was that I needed some time to figure out my own emotions about who I am and what I do. I've talked a lot about identity on this blog, about what it means to me to be a young person living with a chronic illness. But as much as I have talked about it, I feel like I made a breakthrough this year about who I am and my life, migraines and all. For years, I felt that my pre-migraine identity and my post-diagnosis migraine identity are like a twisted version of Dr. Jekyll and Mr. Hyde. They were separate, two different and distinct parts and eras of my life. With my pre-migraine identity, I used to have dreams of working in politics, wanting to make a difference in people's lives. I was headstrong and idealistic, thinking that I could accomplish whatever I wanted to as long as I worked hard to achieve it.

After I was diagnosed, I felt like I lost my voice. I didn't feel like I was able to achieve any of the goals and dreams that my pre-migraine identity was so set on achieving. My post-diagnosis identity was focused on proving that what I was experiencing was real, which took a lot of the limited energy that I had. I had to prove to others that I was truly sick, truly in pain, and truly still a version of myself. I lost my identity because I felt like I had to prove to my friends, my family, and my teachers that I was sick and to do so I had to fit into the conceptions of illness that they had. I pushed myself, sometimes too far, to do what I needed to do to fit these conceptions, and as a result, I was left with a mindset that chided me to get to the finish line no matter the cost. Finish the essay, take the test, just push and get it done, even though you'll crash and have to deal with the after-effects. You'll deal with it when it comes, but right now, you need to prove to everyone else that you can do this, it said. My academic performance became the only way that I could prove that I was able to function, a way to prove to others that I was still "good enough" despite my illness. Being able to hold a job and living a "normal" life seemed like an unattainable goal and all of the dreams that I had seemed to disappear in front of my eyes. This was my Mr. Hyde identity, the one that was riddled with fear, guilt, anxiety and shame, the identity that I preferred to hide from those around me. When I migraine, I get sucked into this vortex of "migraine brain," full of anxiety that no matter what I do, I won't be able to succeed in any career, have productive and supportive relationships, or live a fulfilling life.

Despite how I feel when I have migraine brain, I know that this is completely wrong. Over the past 2 years, and especially over the past 6 months, I've come to realize that my identities aren't as dichotomous as I had thought. I've come a very long way since I was at my sickest, which was only 3 1/2 years ago. My identity is a mix of both my pre-migraine and post-diagnosis identities. I would not be the person that I am today without them, but I also have learned that I am a much stronger person than I ever thought that I was. In the latter part of 2017, I had to take a step back and evaluate who I actually am. I felt that in order to keep blogging, I had to come to terms with my own turbulent ideas about my identity. There was still a part of me that didn't fully accept this part of me, even though I have been writing for years about my experiences. I feel that the stigma of chronic illness is still quite tangible in my life, and I'm still reminded of the little actions that I take to protect this part of my identity from those in my life. It's taken me a while to try and be more open, but I still find myself putting up protective barriers because of the fear that people will not understand. It's kinda like a reflex, but it's one that I am trying to unlearn.  I'm trying to no longer think of myself as weak when I'm experiencing a migraine. Instead, I try to think about how my body and my mind are actually quite strong and resilient, even more so because of my migraines. It just took me a while to actually see that and apply what I preached to my life.

My experiences have brought me to where I am today, with my career goals marrying together the Jekyll and Hyde of my identities. I still want to change the world, but now I'm focusing on public health and healthcare. I am using my platform of migraine advocacy to find a way to impact national legislation in the future. Why should I be ashamed of something that is my life? I shouldn't, and I should not be scared to reach for the stars. All of my experiences have led me to this point in my life, including the good, the bad, and the sickness. It's a long process, learning to put my two identities together, but one that has ultimately made me a happier person, even when I'm dealing with DHE shots, essays, tests, and all of the other things that go on in my life. I've started 2018 with a better outlook on my life, and even though it's difficult, you all know that I wouldn't be writing about it if it wasn't an important part of my life. How do you feel that migraines have affected your identity?