Migraine Advocacy: My Migraine Story, Some Book Quotes + Migraine Summit Notes

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Migraine showed up in my life during early childhood but neither myself, my family, or my doctors knew my childhood headaches was actually migraine disease manifesting. There’s a lot I know about migraine disease and a lot that I don’t because there isn’t that much research about it. Migraine is a genetic neurological disease with multiple symptoms that isn’t understood very well medically or socially or in any way really. Migraine disease and headache disorders are closely related and usually genetic- I have a great aunt who’s had a constant headache for 48 years, and she’s the only person I know of in my family with a headache disorder or migraine. This August will be my 10th anniversary of intractable/refractory migraine- I have a daily baseline level migraine that flares with triggers and sometimes for no reason even though I try to manage it the best I can. As a child I had frequent ‘bad headaches’ and at age 13 I had the first one I first initially recognized as a migraine- it started in August 2009 and hasn’t gone away since. During childhood and adolescence I tried so many different medications and treatments for headaches and migraine and my body didn’t respond to any of them. I remember when it started at school and got worse throughout the day until I was in unbearable pain and my mom took me to the Emergency Room, where they gave me multiple migraine cocktails with no relief so I returned the next night for a repeat of the same thing. When that didn’t work, I had an MRI and CT scan and blood tests done a few months later (that showed up normal), and over the next couple of years there was a lot of frustration and defeat trying to make it stop by seeing multiple doctors and specialists hoping to find the problem or cure. After that when all the resources ran out and I was still stuck with a constant migraine, I gave up finding further treatment until a couple of years ago when I got married and decided to try again. I finally found a migraine specialist who explained migraine disease to me and was the first doctor to really hear and understand and work with me rather than blowing me off like so many others had. She was the one to connect my childhood ‘headaches’ (which she said were likely some episodic migraines) to this migraine that started 10 years ago as an unfortunately typical progression of episodic to chronic migraine, and I took so much medication growing up to try to treat it which is a potential influencing factor in the transition from episodic to chronic and intractable/refractory. There is hope that once I can break this migraine pain the first time, that they will be lesser in frequency and severity after that. I am currently in-between doctors but I was blessed with the opportunity to see a migraine specialist for the first time for almost a year, and I am trying to work it out with insurance to see another specialist. I’ve tried a lot of things out there but I haven’t tried everything- there are a couple different new migraine-specific medications that I want to try besides Aimovig, along with some other options like injections so I have hope.

Doctors either told me that it would eventually go away when they couldn’t figure out a cause, or they believed it was psychosomatic (in my own head) so I started to believed them and literally lived with a 24/7 migraine for years trying to pretend to be normal because if people found out then that meant rejection in one form or another. I’ve experienced a lot of rejection from a lot of people that I just got tired of it so I kept it hidden and carried on with a smile. When I still had a migraine after seeing numerous doctors and specialists and trying all my options at the time, some people thought I was crazy so I learned to drastically minimize my migraine and its impact on my life so I could be seen as somewhat normal and be accepted and taken seriously. Even my family thought it eventually went away because I stopped complaining and thought I just got migraines sometimes when it got bad and I couldn’t control and hide my symptoms- add in multiple layers of family dysfunction on top of that rather than a loving and supportive environment, and you have an invisible and ignored disease. My family did what they could and took me to appointments and tried to find a cure/solution/relief but didn’t have the resources to continue seeking treatments and doctors, and it was clear that my migraine was a burden so after a couple years I pretended like I was fine because I learned that complaining about a migraine all the time didn’t do a single thing to change it. What else do you do at that point? For most of my life I’ve been miserable and bitter and depressed and tried my best to make sure it didn’t show because no one likes a negative Nancy or Debbie downer. I hid my migraine like it was a dirty secret. I was tired of being dismissed as the girl with a headache and hypochondria so I decided it was better off to keep it to myself. I completely lied and edited and deleted parts of myself for acceptance that I so deeply craved. I pushed my pain, feelings, and most things deep down and I got good at hiding basically most of my being. People find it hard to comprehend chronic and constant pain, especially a constant migraine. A migraine usually doesn’t last more than a few days and when it does it continues to go on without relief and over the months and years you just learn to function with it because you don’t have another choice.

I was a migraine behind a mask without hope and my mask was so thick from all the metaphorical and physical fake cover-up and denying a part of my humanity just to survive- with every fiber of my being I was putting all my energy into that instead of being who I really was, migraine and all. Wearing a mask and being in immense pain that no one believed led me to put a smile on my face for a lot of things and to live my life in isolation where I frequently withdrew because of migraine and hid it with a good cover- I felt like a master masquerader, and everything I kept hidden festered and fostered damage inside that was getting harder to keep to myself. Oh how I longed to be fully seen and deeply loved. I masked my migraine with a lot of “yeah I get really bad headaches” because whenever I said migraine, I felt almost instantly discredited and misunderstood most of the time when it seemed as if the other person heard me say headache in the first place, so I started calling it that and denying a part of my humanity to save the hassle of it all. To tell someone I’ve had a migraine since I was 13 and headaches and migraine before that usually leads to the other person thinking I’m a little crazy or a hypochondriac with a headache. It’s a hard thing to conceptualize and comprehend, especially if you’ve been surviving and managing it for so well for so long and intentionally keeping it a secret that no one notices. I still struggle with this even as I’m learning to speak and live truth instead of living with lies like before. I completely broke down at the end of my sophomore year in college working as an overnight manager at McDonalds and taking 4 classes for two years at a university. I just couldn’t do it anymore and was at rock bottom- I was pushing myself so hard and was my own worst migraine enemy. I was so miserable and depressed and spent a year at home figuring out what to do with my life- I cut back on my work and school load, switching jobs and taking a couple classes at a community college (I’m currently putting school on hold for a bit to handle my plate well and take care of myself). A year later I came back and decided I was going to start fresh and try again and take my mask off and live as myself, chronic intractable migraine and all. My whole life I’ve hidden my pain and it wasn’t until I really got to know Jesus that I started to learn how to live with it instead of hiding it with a miserable mask. He sees and He knows. He accepts and He loves. I started to take my mask off and let God take all of my messy brokenness and trust him to redeem it into something good- and oh how He was faithful to do just that. Since taking my mask off I’m finding that I do indeed face much rejection and am misunderstood most of the time, but I’m finding that living a life with a vulnerable courage is like walking in the wilderness and it’s so freeing. Yes, it hurts when people don’t get it or could care less about even attempting to understand it. Yes, some people think I’m a little crazy and that’s okay- their opinion doesn’t matter anyway. I’m slowly finding some people around me that love and accept me for who I am and who truly support me by genuinely being there and attempting to understand me and migraine.

The deep depression and all-encompassing anxiety of it all is difficult to distinguish apart from migraine, but the internal battles are almost always there. The brain fog and cognitive struggles made me think I had a legitimate mental retardation on top of migraine for the longest time and I sometimes still struggle with my brain not being where I think it should. I am thankful that the darkness has been drastically dimmed by the Light, but it’s still a daily struggle to mentally cope with the shadows. Working through lifelong acceptance and a renewed hope at the same time is a difficult balance to find. I hate that my migraine seems to manage me, my marriage and most of my life more than I manage my migraine. Chronic migraine is teaching me to choose joy when it’s hard and unnatural to. It has made me struggle to love and accept myself and experience that from others and God. It’s teaching me to be gentle with myself and to stop pushing myself to do everything just like everyone else and that I’m a little different and that’s okay. Chronic migraine has helped me develop healthy boundaries with myself and others. It has made me question every little single thing in my life and makes it hard not to have anxiety or overthink everything. It has helped me figure out what’s important and what isn’t as important as I once thought. It’s teaching me to embrace simple rhythms and routines for my health and well-being. It’s teaching me to find genuine connection amidst the deep dark loneliness of it- letting people truly see me has been a process and the mask I had on for so long prevented the genuine connection I needed. It has been a struggle finding true authentic connection and finding my tribe and not worrying about those who don’t even try to get me- few people have been able to understand and few support me but the ones that do are gems from Jesus. I have a small support system but it’s slowly growing- I’ve had some familial support off and on throughout the years but it hasn’t been very strong or consistent, which was a frustration for me for a long time but I am now seeing as a strength, and God has provided family in His own way to fill in the gaps and healthy relationships to build and restore. I am open about my migraine and have struggled sustaining friendships with it and the baggage that comes with it, and I’m finally discovering the goodness of awkwardly building relationships with the ones that stick around. Social media and meeting others with migraine has been so refreshing and beneficial and helped me find comfort in community with others experiencing similar struggles. I am open about migraine at work and talk with my manager and shifts about how I’m feeling and if I need any adjusting in my roles and work accordingly if I am really struggling- some bosses have been understanding and some haven’t been, but I am so grateful for the ones that are. There are still so many sad things people believe about migraine and the stigma is still so strong- I’ve been accused of having migraine because of a sin issue in my life or unforgiveness in my heart, both of which I admit I have struggled with and have learned to work through those processes with Jesus and counseling- yet the beliefs remain.

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Some Quotes from 10: A Memoir of Migraine Survival by Danielle Fancher- I just read this book and I admire this woman’s courage to tell her story and give an inside look on living with migraine disease.

  • “’Sometimes when you’re in a dark place you think you’ve been buried, but you’ve actually been planted.’” –Christine Caine
  • “Since there are approximately 39 million Americans who live with migraine, most people are aware of someone who suffers from an occasional intense headache, I doubt that there are many who have befriended the 10 million with chronic migraine where the person suffers a range of symptoms at least one out of every two days of their lives year after year. This more severely disabled community of sufferers who have to manage their unpredictable disease wear a public mask and often do not discuss their disease because of the risk of being shunned. Most people do not understand that migraine is so much more than head pain. It can affect how the gastrointestinal system works, muscles feel, and the mind sleeps. Often it overlaps with feelings of depression or anxiety.” “According to the Migraine Research Foundation: There are roughly 39 million Americans and 1 billion migraine sufferers worldwide, approximately 28 million women in the United States battling migraine, and over four million adults have chronic daily migraine, consisting of at least 15 migraine headache days per month. These numbers, and the many stories behind them, motivate me to give a voice to this soundless illness.”
  • Her appropriately named titles and sections include: Navigating the Early Stages of Migraine, Invisible in Plain Sight, A Glimpse of Migraine, Lost Experiences, Staying Positive as Migraine Takes Control, Enjoying Life Regardless, Refusing to Fall Behind, Seeking Success in Failure, It’s Not ‘Just a Headache’, Moving Into Acceptance, Using Mind and Body as Tools for Prevention, Eating Strategically, I’ll Try ANYTHING!, Releasing Emotions, Staying Present, Facing the Mental Side of Physical Pain, Finding a Creative Outlet, Struggling with Thoughts of Death, Testing Close Relationships, Leaning on Family, Taking Ownership, Appreciating This Migraine Brain, Quitting Life, Discovering Power in Creativity, and Finding Purpose in Pain.
  • “At this time, I knew very little about migraines, how I should discuss them and how they could impact my life. But one thing was sure: I knew that migraines were a ‘thing’ that is not openly discussed in any setting.”
  • Everyone must think I’m a miserable person. If I were any of them, I would completely avoid me. I’m such a downer.”
  • “Dealing with migraines can be looked at as a game. Sometimes you win: you overcome the pain and get on with your life without missing out on an experience. But sometimes you lose: the migraines completely take over and no strategy can be executed to change the outcome of the game.”
  • “It’s a challenge to figure out how to balance pushing myself far enough without pushing my migraine brain too far. And when I can do it, successfully experiencing life while also overcoming a migraine feels like a major victory.”
  • “The challenge came out of staying positive after multiple failed attempts of looking to find correct answers. Moving forward, I knew that I had to give every treatment a try, but that I had to be realistic that it may not provide relief.”
  • “Living with migraine pain is hard enough. Feeling like your illness is not taken seriously makes it much harder.”
  • “Even morphine couldn’t fix my head. I am so fucked up.”
  • “I decided to maintain a no-one-needs-to-know mentality when it came to migraines in my personal life and workplace. No need to make the same mistake twice.”
  • “I didn’t want people to see me, or my work, differently because of my migraines, but they did. And after my experience with my previous boss and my college tennis coach, I knew that I couldn’t handle another letdown of someone misunderstanding my illness and seeing me differently. I wanted to find a solution, but I didn’t know how to fix the problem in front of me. I wondered how I could share this private side of myself, without receiving judgment in return.”
  • “Considering that there is no clear answer to solving the migraine problem and that the attempt to find an answer, at times, seems insurmountable, you may find yourself saying ‘it is what it is.’”
  • “Sometimes sacrifice is important in building a healthy relationship, even if the relationship is just between you and your migraine brain.”
  • “Even on my best of days, I had a bad headache, and, while excellent at ignoring the pain, I always knew of its presence.”
  • “Unbeknownst to me, my migraines forced me to step outside my comfort zone, become a healthier person and rethink every aspect of my life.”
  • “Managing migraines parallels working for a sociopath. In your head, you think that you are doing a great job at dealing with the migraines or your boss. You create little milestones that only you can pat yourself on the back for achieving. And then, when you feel that you have overcome the obstacles put in front of you, your boss/migraine slaps you back to reality and puts you back in ‘your place’, feeling low, down, and utterly defeated.”
  • “I hoped that meditation and sharing my illness would provide the release that would help prevent more migraines and give me the forgiveness that I needed as I continued to unscrew the lid to the bottle of my complex mind.”
  • “Pain makes it hard to look forward to things. It’s hard to think about how painful life has been and how long pain will last in the future. All we can do is focus on right now, which is easier said than done.”
  • “Who would I be without my pain? I definitely identify myself as a migraine sufferer, but that doesn’t make me who I am, right? I am a tennis player, a marketing researcher, a good friend, an adventurer, a reader, etc. But I don’t think that migraines make me who I am. I actually think that they take away from me all of the great things that make me ‘me’. But, Dani, you always tell yourself, ‘this is my life,’ when the migraines come on. But at the same time, without the migraines you would still have a very whole identity. My internal dilemma made my head hurt even more. Maybe I am, unknowingly, grounding my sense of self in my migraine life instead of my migraine-free life, if it is still buried in there somewhere. His words sat with me for weeks, and I thought about them over and over. I also thought about how I identify myself, both consciously and unconsciously, as a migraine girl. How could I have given up hope of a migraine-free life- a migraine-free Dani? I hated myself for thinking this way, but I didn’t know how to believe anymore.”
  • I hope my head doesn’t get bad soon. I knew it would happen at some point, but I didn’t know when.”
  • “Migraines work like a dysfunctional stoplight. Sometimes they hit hard, very hard, and completely out of nowhere, and then you need to stop everything you are doing immediately. You may go right back to your normal self once it passes. Other times, you may experience a slower moving and subdued migraine that doesn’t force you to stop until much later.”
  • “It felt as if the doctors and nurses caring for me were caring for someone with a headache, not a migraine… I also have been to the hospital between ten to twelve times for migraines in the past, as a last resort, and I honestly don’t think I have ever left feeling better.”
  • “The words, ‘We won’t be able to cure your migraines,’ stung in my head. I KNOW THAT THERE IS NO CURE. I KNOW THAT THIS IS MY LIFE. I DON’T WANT A REMINDER THAT THIS IS HOW I WILL HAVE TO LIVE AND THAT YOU DON’T KNOW HOW TO CHANGE THAT. I ALREADY KNOW THIS. How could I have been so hopeful that you would, at the very least, have some hope for a migraine-free life for me? Dani, come to your senses. This woman is clearly trying to help you. She understands your situation and wants you to get better. I let out a deep exhale. You just need to accept that ‘managing your migraines’ is the best you can get…This is my life. They just confirmed again, that my life will forever be one of migraines, and I have to accept it. After all these years of knowing there is no real fix, I wondered why it hit me so hard to hear it bluntly. A little part of me always held out hope. I knew all of this information; it was nothing new. But why did it hurt so badly?”
  • She understands. No one ever understands. I needed that connection so badly. We were both members of an exclusive club whose members didn’t know who else lived on the inside, a club all of whose members wanted out.”
  • “At its worst, a migraine puts you in checkmate, and you have no other options than to stand firm in anticipation of the inevitable defeat. Also at its worst, a migraine may force you to do something unexpected, like begin writing letters to your brain.”
  • “Next step: Deal with insurance…My insurance company’s ability to send me around in circles left me feeling irate. I found it even more frustrating that they would not cover anything from any of the other best migraine and headache centers either… Not only was I battling migraines but I was also battling my insurance company.”
  • “In my ideal scenario, someone would say, ‘Of course she cancels plans all the time. She is very sick. What else is she supposed to do-never make plans and assume that she will always have to stay home?’ But I knew that was not how the conversation continued. When I heard things like this, I wasn’t surprised, but I was also not pleased. After having heard comments like this and unreturned text messages and phone calls, I decided to cut the fat. If I didn’t think someone would understand if I needed to cancel plans, then I cut them out. I was fighting for my life; expending any energy on superficial friendships was not worth my energy. I needed friends to lift my spirits and to keep me sane, not to fill my calendar…Fortunately, once I stopped caring about my superficial relationships, I found an opposite effect in my personal relationships. The ones that mattered grew deeper.”
  • “I couldn’t believe how many migraine sufferers I met during my stay at the clinic, all of them facing debilitating migraine pain every single day. How am I just meeting them now? Why is the migraine community seemingly without a voice or sense of community?”
  • “When feeling desperate for answers and suicidal, every once of you wants to pull the trigger even though you are very much aware that it is an unacceptable option.”
  • She made a list of all the treatments she had tried: 102 of them in various categories such as different classes of medication, procedures, non-traditional tactics like acupuncture and chiropractic, lifestyle and dietary changes, cleanses and natural remedies, supplements, devices, essential oils, mental coping mechanisms, and more. Of her extensive list, I personally have tried 69 of them. I haven’t tried hypnotism, devices like Cefaly, procedures like Botox or nerve injections, alternative therapies like Reiki or reflexology, in-patient treatment at a special center, and there are some medications I haven’t tried that are within the same class of medications as ones I have taken (that haven’t worked and are designed for other things, like antidepressants or betablockers).
  • “At the end of my rope I made an appointment to see Dr.Stein. She said, ‘I know you are in a lot of pain still, but you are a rock star. You are doing everything that you are supposed to be doing’. I smiled at her. It felt good to hear that I was doing everything right. However, at the same time, it hurt to hear that I had done everything right when there was no improvement.”
  • “Now not only did I find myself sinking into a hole of mental madness, but everyone made me angry. I knew that many people were being considerate of my illness, but I sincerely wanted to punch anyone who said:  Question: “Have you tried…” Answer: “Honestly, I have tried everything: every medication, procedure, supplement, etc.”

–       Question: “It has to be…” Answer: “It’s actually an enigma. I have had every test done to see where the migraines are coming from. Tests have given no real answers.”

–       Question: “It must have to do with…” Answer: “I have spent years of my life looking at every decision I have ever made, every food I eat, every experience I have and every place I visit. The common denominator, despite all of the changes, is that I can get a migraine in any situation, after eating any type of food, at any type of stress level and at any location.”

–       Question: “What do you think it is?” Answer: “Migraine.”

–       Question: “It’s gotta be triggered by…” Answer: I know some of my triggers, and I avoid them as much as possible, but it is just not something that I can control.”

–       Question: “There has to be an answer…” Answer: “I know that it’s hard to understand, but there are no answers. There is no cure for migraine. There are just many forms of trial and error.”

  • “I wished that people’s misunderstandings didn’t bother me, but it did, deeply.”
  • “I need to do something to change the conversation, because no one else is going to do it for me.”
  • “Even when there are aspects of your life that feel permanent, you have the power to rewrite your story.”
  • “I could choose to try every technique possible to rid myself of pain, but I needed to remind myself that I have an illness and accept it. The choice of acceptance, in my mind, was an important step in coping.”
  • “Your personal power is somewhere, but you need to notice it first.”
  • “Dear Migraine,  I hate you. I have hated you for a long time and have tried to pretend that you do not play a role in my life. However, I can no longer pretend that you are not a part of me. You are inside of me and will forever play a role in my life whether you are present or not. I do not want to write you a letter to tell you how much you have hurt me. Instead, I want to write you a letter of thanks for everything that you have done for me, even though I didn’t see it until now. Thank you for teaching me patience. Before you, I thought that patience meant fighting my frustration as the girl on the other side of the tennis court who intentionally bounced the tennis ball too many times before serving. Instead, you have shown me that patience is a form of strength. Thank you for putting a new filter on my worldview. I now understand that everyone has a story and a personal struggle that I cannot see and know nothing about. Thank you for connecting me with other migraine sufferers. The baseline of pain that you provided me brought me undeniably close to total strangers and gave me the opportunity to talk to them about the stuff that nobody else ‘gets’. Thank you for pushing me to reinvent myself. I appreciate the old Dani, a naïve, normal girl excited about her future. However, I much prefer the person that I have become not despite you but because of you. Even if I am depressed, a stoner and someone who can’t make it to the gym, I am more whole than ever before. I don’t know how to explain this feeling, but I feel more like me than ever before. Like an expanded version of the old Dani I once knew, in both the good ways and the bad ways. Thank you for showing me my strength. My view on strength no longer involves muscle mass, weight reps or control because my strength appeared when my muscles had atrophied, when I could barely lift my heavy head off my pillow and when I had no control over my life. You showed me that my strength lives within me and that I am strong. Thank you for making me feel so misunderstood that I needed to write about it. Never before had I turned to writing for anything. But you pushed it out of me. You woke me up in the middle of the night itching to put words on a page. And when you did, it didn’t make me feel more understood, but it gave me an outlet that I had never once considered. For this I am eternally grateful. Thank you for giving me the confidence to publically share a private side of myself. For the entirety of my life, I have tried to be the most perfect version of myself possible. I have wanted to seem strong, smart and beautiful. But I do not care anymore. Those things don’t matter when I am in pain; I have something of higher priority to deal with, like getting through the day. Should I ever be free of pain, I know that I am capable of living above that everyday nonsense. Most importantly, thank you for giving my life purpose. Without you I never would have gone to Costa Rica and sat in a class where the question was posed, ‘What is your life’s purpose? And I wouldn’t have walked out of that class with a list of my five ‘callings’: building relationships, creating dialogue, making connections, organizing things, and researching things. I trusted the exercise that I did during the class and my list of callings that resulted, but didn’t really see them until now, as I write you this letter. By sharing the migraine Dani, I am doing all of these things in some form or another. While I may have checked these boxes, on a superficial level, before you, I feel that you had to come into my life for me to tackle all of these callings. Your purpose was to make me write and my purpose is to share what I have learned. On some level, I appreciate your stubbornness. You needed to be here to teach me these lessons and it needed to take a long time for me to understand. And that’s okay. Now, I am ready to start the next chapter of my life, with the lessons that you have taught me but without the physical pain. – Danielle”
  • “It had been around six months since I had written the thank you letter to my migraines. During that time, I gained a new sense of power over them. Despite their continued efforts to pull me down, stab me with pain and steal my life, I kept telling myself that, ‘This is my path. And I need to go through this.’ While I still had breakdowns every couple of weeks, in private, I knew that everything was going to be okay, even if it was not. In some way, I felt at peace. But something, in that pit, kept nagging at me, hinting that I could dig a little deeper in my thinking about my migraines and my writing. One morning, as I stood in a packed subway car, during a morning commute, with my shoulders collapsed inward, the smell of armpits wafting through the air, and sweaty limbs rubbing up against mine, I realized exactly what I needed to do. A few evenings earlier, I read a chapter on forgiveness in a book by Gabrielle Bernstein called May Cause Miracles: A 40-Day Guidebook of Subtle Shifts for Radical Change and Unlimited Happiness….I came to the realization that I hadn’t forgiven myself. If you are really honest with yourself, Dani, you have not forgiven yourself for letting your migraines rule your life. Without any thinking, or coffee as fuel, my fingers started typing another letter into the notes section of my phone. This time, it was a letter to myself.”
  • “Dear Dani,  I am going to start with the good stuff. You have killed it! Somehow you have continued to live an exciting life- the life you have always wanted to live- regardless of your pain. That alone is a huge accomplishment. You should be very proud of yourself. Every day you push yourself to do as much as physically possible, stay alive, and not let your migraine win. You have survived something that no one else will ever understand. I am proud of you. However, I know you are disappointed in yourself for letting your migraines take control. Now is the time to forgive yourself and finally let go of the disappointment. Let’s start at the beginning. It’s okay that you didn’t scuba dive in the Whitsundays. If you hadn’t missed out on that experience, you may never have gone cannoning in Switzerland, exploring Iceland in the dead of winter or done Qigong in Costa Rica as monkeys watched overhead. It’s okay that you have missed out on scuba diving, trips, dinners, date nights, even your own birthday parties over the years because of your migraines. Now it is time to forgive yourself and let go. You have made so many mistakes at work due to your migraines. They happened. Some were in your control and some were not. Regardless of whether you could have handled those situations differently or not, you need to forgive yourself and let go. On a similar note, I know that you also feel behind in terms of where you think you ‘should be’ in your ideal career trajectory. But this is your path. Forgive yourself and let it go. Unfortunately, this battle is not over. You will feel disappointed hundreds, maybe even thousands more times because of your migraine brain. Now is the time to make the decision to start forgiving yourself as these things happen. I don’t mean that you should stop trying or caring or being hard on yourself. Instead, try to think differently. You will make more mistakes, you will lose more fights against your migraines and you will handle more migraine-situations poorly. As this happens, you need to forgive yourself and let it go. Keep fighting, Dani”
  • “It started with a spot, and it has not ended. Many nights I have had that dream of waking up in my apartment, pain-free and living a full day without the constraints of my migraine brain. I’m not there yet, but I’m hopeful.”
  • “The one caveat is that I am always in pain; the same pain that started on October 2, 2013, over five years ago, continues today. Although I am still searching for my ‘miracle’, I’ve been able to find beauty in this situation…With that in mind, I am sure you are wondering what my life is like today. As I noted, my life is great- and I mean that. I’ve come a long way since the day of sitting in my childhood bedroom – broken – trying to make my bed while a scorched hole sat in the ceiling above. Today, I continue to live in New York and I’ve begun regularly writing about my migraine experiences. Professionally, I am lucky enough to work full time at a job that I enjoy- one that challenges me, with people who understand that I may need time off due to my pain. Personally, I make it a priority to connect with my friends and family as much as possible, whether through my monthly forum meetings, my regular sushi dates with my college and camp girlfriends or hour-long conversations on the phone. I recognize that I am lucky to have these relationships in my life. As I see it, I have achieved that ‘happy ending’ – it’s just that I have a different definition of what that means. I am proof that life does not stop with pain and, further, that it is possible to live a fulfilling life in this circumstance. And I hope that those who don’t yet understand this or feel my pain can’t possibly be this bad if I am saying such a thing keep hanging on so that they too can understand one day. Even if it doesn’t completely get better, it may get a little bit better. And if it can get a little bit better, then maybe it can get a lot better.”

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Migraine Summit Video Takeaway Notes – The Migraine World Summit is a gathering of the leading neurologists, researchers, clinicians, and migraine sufferer advocates. You can watch the video interviews for free with online registration for the week it’s going on during March at migraineworldsummit.org. This year was the fourth Annual Migraine World Summit but this was my first year watching it. These are my notes that I wanted to share for my own records and to help bring education and awareness to others. I prioritized and watched the videos that seemed the most interesting and relevant to me, but I think next year I am going to have to make a marathon of it and watch more of them because so many seemed full of good information.

Controlling Unresponsive Chronic Migraine (David Dodick, MD)

  • The brain of someone with chronic migraine differs both structurally and functionally than those with episodic migraine and without migraine. Some brain neural connections are strengthened. Areas of the brain that process pain are heightened in sense and areas of the brain that shuts off pain is weakened making a terrible combination. There are changes in brain activity in certain areas during migraine attacks.
  • Chronic migraine means at least 8 migraine days per month and at least 15 headache days per month and characterized by very frequent attacks. Most patients have symptoms almost daily in-between full-blown attacks. Chronic migraine is often comorbid with depression and anxiety, mood disorders, epilepsy. The baggage of the disease further impairs the ability to function so it’s incredibly disabling. It occurs in about 2% of the population, 300 million in the United States and at least 6 million with chronic migraine. Normal progression from episodic to chronic migraine and can become refractory/intractable if it doesn’t respond to treatment. Some people respond to some treatments and others don’t. New Anti-CGRP drugs are helpful for many.
  • What’s happening in the brain and nervous system? Central sensitization means some areas of the brain become more excitable that lowers the pain threshold, making the brain more vulnerable and sensitive to triggers. Research is so important- we need to figure out why the pain receptors are shutting off and continuing to fire pain signals.
  • What about those are never pain-free? Take care of yourself and get to know your pain patterns, know when it’s going to escalate, know your body, take medication when you know you’re headed there. Try to reduce the number of times pain escalates and take acute medication. New acute treatments will become available within the next few years to treat attacks. Address and modify risk factors within influence.
  • Exercise, sleep, and a good diet is crucial.
  • Migraine is a genetic disorder not just due to one gene but likely due to variations in multiple genes. It is part of what you’re inherited with and part of it is the environment and risk factors that are layered on top of that determines how it manifests.
  • The goal is to have more migraine doctors and centers around the country and world because access to treatment is so limited right now and doctors and treatments are few.
  • Get to a headache specialist with expertise and knowledge to attack it from multiple angles. Find a headache center with an integrative and multidisciplinary approach to treatment, should have a pain rehabilitation program.
  • Can easily get frustrated chasing your tail trying to figure out all your triggers. Keep a simple diary – mild moderate or severe for how much of the day anything unusual or out of the ordinary.
  • A trigger is a consistent thing that brings on a migraine attack or increases the severity.
  • Hospitalization suggested when migraine is much more intense or different than before or changes in character.
  • Why are so many doctors unaware of chronic migraine? Lack of education. He received 0 hours on migraine or headache disorders during his schooling. He only got one 2-hour class during his residency training before advanced training in his field. The average doctor doesn’t have a single clue about migraine disease. Migraine constitutes 25-30% of all neurology patients. Neurologists get some training but not much or in depth. There needs to be a push for a mandate that doctors receive some training on migraine disease and headache disorders. There is also a lack of adequate funding to accelerate progression of knowledge.

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The Latest on Medical Marijuana for Migraine (Dr. Eric Baron, DO)

  • CBD is 100 times more anti-inflammatory than aspirin, THC is 20 more times anti-inflammatory than aspirin and twice as anti-inflammatory as hydrocortisone. THC also has some analgesic pain relieving benefits. There are pain relief benefits in both CBD and THC.
  • There are legitimate therapeutic benefits for cannabis with migraine and chronic pain. The evidence is most strong with cannabis being useful in treating pain, multiple sclerosis, and nausea. There is growing evidence for cannabis with epilepsy- new medication Epidiolex recently approved.
  • Medical marijuana is a viable legal option for people with migraine. Australia, Canada, and over half the states in the US and Europe have legalized medicinal marijuana.
  • Cannabis is still a scheduled 1 drug (which means the DEA claims there is no medicinal value, although plenty of research shows otherwise), with this being a major obstacle to research. If it can be rescheduled to schedule 2 then much more research can happen. It’s been illegal for a while but has historically been used for a long time throughout the world- before it became illegal in the US it was used pharmaceutically for many things, especially chronic pain and migraine. The politics like competing cotton and synthetic fiber industries played a huge political influence in that decision. Cannabis use decreased with the Marijuana Tax Act of 1937 that imposed large fines and prison time on anyone who was involved with the cannabis industry after one guy tried to criminalize it, and the American Medical Association strongly opposed this bill. In 1941 cannabis preparations (medicines) were taken off the national formulary. The Controlled Substances Act of 1970 made cannabis a schedule 1 drug and made it very restricted.
  • In 2003 the US government was awarded a patent for cannabinoids in health and human services for neuroprotectants and antioxidants. Paradox claiming no medical benefit while having a patent for cannabinoids and approving medications with cannabis. There are currently 3 FDA approved medications- 2 contain THC all 3 have CBD and are primarily used for nausea from chemotherapy and epilepsy.
  • In November 2017 world health organization put out a statement that CBD exhibits no concern for abuse dependence or public healthy issues. This year in January the World Anti-Doping Agency has removed CBD from its prohibited list of substances for athletes.
  • The endocannabinoid system in our body is involved in all organ systems and helps regulate homeostasis and is very involved in the nervous system.
  • Vaporization is suggested to eliminate smoke inhalation. Oils, tinctures, oral formulations, edibles and other options.
  • There are no deaths from overdose of cannabis and there is no respiratory depression like opiates.
  • Evidence for cannabis and migraine lacking strong data as of now but there is solid evidence for cannabis and chronic pain and migraine is a form of chronic pain.
  • Medical marijuana is not widely accepted yet.
  • Recent paper published by National Academy of Science and Engineering analyzed all the data out there and came to the conclusion that cannabis is beneficial for chronic pain syndromes.
  • 2014 Canadian pain society recommends cannabis as 3rd level treatment for neuropathic pain. It is a viable option to help with the opioid epidemic tool for opioid detoxification with a 30% decrease in opioid mortality in cannabis-legal states in US.
  • It is used both acutely and preventively, as needed and ongoing.
  • More research will open the door to understanding it a lot more.
  • Side effects include dry mouth, increased appetite, red eyes, short-term memory impairment, poor concentration, anxiety, and paranoia with higher THC doses.
  • THC and CBD used together suggested because CBD neutralizes negative THC effects.
  • Currently 32 states have medical marijuana and 10 states legalized adult recreational use.
  • Long term effects are unknown but potential issues with blood pressure or increase risk of stroke in someone with cardiac disease but the evidence is inconsistent. Use in adolescence is the biggest concern because it could cause neuropsychological and neurocognitive issues.
  • Who could benefit? Patients who have tried and failed other treatments.
  • Think of cannabis as a general class of medicine. Each strain has a different set of clinical characteristics and features with some consistency. Process of fine-tuning and tailoring for patients to find what works best for them. If you try one strain/kind of application and it doesn’t work try another because they vary a lot.
  • Laws are currently murky with a disconnect. Doctors can’t prescribe cannabis but they can fill a form out to recommend patients to get medical marijuana and they take it to a dispensary. Access to dispensaries varies.
  • In the future increasing research for medical marijuana to have more evidence to hopefully sway laws to legalize medical cannabis.
  • The key is advocacy at the local level- bringing your case with evidence to local lawmakers to try and convince them to make changes – change starts small and goes higher up.

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What’s Holding Us Back From Getting the Care We Need? (Robert Shapiro, MD)

  • Pink and breast cancer with grassroots advocacy went from being this taboo thing to being demystified with increased awareness, detection, and activism that’s led to research. Migraine is still unspoken but in a very different way – it’s unspoken among the people that have it. It’s necessary to break the attitude among others that it’s just a headache and turn this around.
  • Encountering stigma- someone having a trait that is discredited, something that taints them. Stigma holds us back and forces people to hide and not show it because migraine lacks visible symptoms most of the time.
  • Study in Great Britain done of credible reasons to call out- migraine was the least likely credible reason to call out of work so if you have migraine and it’s disabling a lot and you can’t call out sick you’re at risk of losing your job and you have very few options.
  • “Never once have I faked having a headache, but I faked being well every single day” -Mary Vogliano
  • Migraine is a trap that leaves no choice sometimes so loss of productivity is a major problem.
  • It is difficult to get grants and funding for research which is hindering treatment. The NIH funding has continued to stall- relative to disease burden migraine is the least funded.
  • There are currently only 570 board certified doctors in headache medicine.
  • There are consequences with a lack of funding. Research allows this invisible disease to become visible and validates it. Not just a conversion of stress into your system or a bad attitude or not coping this is a disease entity. Research provides links and clues and traction to learn more which could potentially lead to more treatments.
  • Migraine is invisible. Current situation migraine is trivialized as headache, it’s disrespected and it’s discriminated against.
  • Without actually encountering migraine there is continued isolation, delayed effective treatments, lack of workplace support, and disability rights discrimination.
  • What can we do? Think differently about your disease. You are entitled to understand and believe and feel validated that your disease is real. Don’t let anyone discount it. Talk to people about it- it takes courage and there’s risks. Educate. Engage in social media. Get involved and tell your story. Work to change the structural stigma. Know and defend your rights.
  • We need more research and social security disability reform and address barriers for recognition of migraine as disability.

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Other Noteworthy Information

“There is a staggering 37 million people living with migraine in the United States alone. Many of those people have never had their symptoms taken seriously or even addressed by a headache specialist,” said Meghan Buzby, Executive Director of the American Migraine Foundation. ‘The more resources we can dedicate to education and driving public awareness, the more effective we will be at giving millions of people the tools they desperately need to advocate for their health and overall well-being’” (americanmigrainefoundation.org).

“Migraine is the third most prevalent and sixth most disabling medical illness in the world. Despite the more than 1 billion people affected by migraine around the globe, it is vastly underrecognized and undertreated, and there remains tremendous disparity in patient access to education, healthcare services, and drug, device, and non-pharmacological treatments. The risk of other serious diseases is significantly higher in those with migraine, including stroke, epilepsy, depression, anxiety and chronic pain. Despite this, only one of every three people talk with a doctor about their migraine attacks and of those, only half get the right diagnosis. There is also a massive shortage of specialists focusing on migraine, with one specialist for every 65,000 individuals living with migraine, which worsens the problem” (americanmigrainefoundation.org).

https://wildlyredeemed.com/2018/07/12/read-this-if-you-have-migraine-disease-or-know-someone-who-does/

https://wildlyredeemed.com/2018/02/19/marijuana-mental-illness-migraine-why-i-speak-up/

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