What I Wish People Understood About Living With Migraine By Michelle L. Tracy

Sponsored: Each year, June is designated as Migraine and Headache Awareness Month. Our community utilizes this time to empathize, educate, and empower the millions of people living with migraine.¹ However, for many people living with migraine, especially those living with chronic migraine, every month is Migraine and Headache Awareness Month. As someone who has lived with migraine for almost 17 years (and endured chronic migraine for most of them) I have found that this disease is often misunderstood and shrouded in stigma.² The importance of having a support system to help manage migraine cannot be understated yet it can be challenging to truly understand life with migraine unless one has lived it themselves. Here are the top five things I wish people understood about living with migraine.  

1. A migraine is not just a headache.³ It is a distinct neurological disease.³ Though head pain can be one symptom of a migraine attack, there are many other potential symptoms as well.⁴ These may include (but are not limited to) nausea, vomiting, dizziness, and sensitivity to light and sound.⁴ Every migraine patient is different and has different triggers that induce migraine attacks.⁵ In my opinion, it is not only dismissive to refer to migraine as “just a headache”, but incorrect.³ By avoiding the term “headache” and using words like “migraine attack” to describe a specific instance and “migraine” to describe the disease, you can help educate the general public and show the people in your life who live with migraine that you truly understand them.

2. Because of certain triggers, a migraine attack can come on very suddenly and seemingly out of nowhere.⁵ A person may be fine one minute and not okay the next. They are not faking or exaggerating. They are not lazy or looking to get out of work. They do not want to cancel a social engagement at the last minute. They have a debilitating neurological disease that can impact many areas of their life.¹,³ It’s difficult to participate in your day to day life with migraine. Do not assume that someone must not feel too bad because they are on social media. For many people living with chronic migraine, social media is their only source of socialization. Chronic migraine can feel incredibly lonely and cause social interactions that were once critical to that person’s life to shift because others don’t understand what they’re going through.² People with migraine want to surround themselves with people who understand them and believe them. Take it from me, if you can be one of those people for someone, it’ll mean more to them than you can imagine.

3. Migraine is not a psychological disease or “all in our heads.”³,⁶ It is also not only a “women’s disease.”¹ As a person living with migraine I have found that engaging in weekly sessions with a counselor has been incredibly helpful for me. My counselor works with me to develop coping skills and to re-build my “new normal.” The type of therapy I engage in encompasses both individual and group sessions that teach skills in four core modules: mindfulness, interpersonal relationships, emotion regulation, and distress tolerance. While I find all of these helpful, the distress tolerance skills are particularly helpful for me during a migraine attack. I find the other three modules to be more useful before and after the attack itself. Validation is also a key piece of this practice. Sometimes all I need is for someone to listen and bear witness to the joys and challenges of my life while also helping me navigate them.

4. Having a support system is an important part of living with migraine. I have a group of people in my life that I refer to as my Dream Team and I am forever grateful for their love, wisdom, support, compassion, and empathy. This team includes (but is not limited to) my family, my friends, my primary care physician and her staff, my headache specialist, my therapist, my psychiatrist, my Intuitive Eating/Health At Every Size nutritionist, my two favorite pharmacists, and the chronic illness support group I attend. At times, I have also had a massage therapist and an acupuncturist on my team as well. Living with migraine can be so lonely and isolating and having people in my corner is so important which is why I’ve teamed up with the Know Migraine Mission community to help make the world more migraine friendly and to help those with migraine feel supported. People I thought were my friends dropped out of my life when my migraine attacks became more frequent. However, the community of people living with migraine and other headache disorders has welcomed me with open arms. Meeting other people who really understand what life with migraine is really like has helped me feel less alone. They have become my family and I cannot imagine my life without them. Those relationships would not exist if I did not have migraine and as odd as it may sound I am grateful that migraine brought us all together.

5. There is currently no cure for migraine. However, this is a very exciting time for people living with migraine because there is so much research being done and many different migraine management options are now available-some with data showing long-term benefits.

If you are a person living with migraine, please know that you do not have to go through this alone. There are many different organizations and support groups to help. You have a community of people who understand you even if you have not met them yet. Start by sharing something you wish people understood about those of us who live with migraine. You may find that someone else can relate and a connection could be made.

This post is part of a collaboration between myself and Amgen. I have been compensated for my time. To learn more about my involvement in the Know Migraine Mission, please visit http://www.KnowMigraineMission.com.

Reference

1. Lipton R, Bigal ME, Diamond M. et al. Migraine prevalence, disease burden, and the need for preventive therapy. Neurology. 2007;68(5)343-349.
2. Rutberg S, Ohrling K. Disabil Rehabil. 2012;34(4):329-336.
3. Russo AF. Annu Rev Pharmacol Toxicol. 2015;55:533-552.
4. Headache Classification Committee of the International Headache Society (IHS). Cephalalgia. 2018;38(1):1-211.
5. Kelman, L. Cephalalgia. 2007;27(5): 394-402.
6. Sprenger T, Boorsook D. Cur Opin Neurol. 2012 June;25(3):252-262.

SPONSORED: WHAT I’VE LEARNED AS A PERSON LIVING WITH MIGRAINE DURING THE COVID-19 PANDEMIC

It hasn’t been easy for many people to manage life during the COVID-19 pandemic, but it may present some unique challenges for people living with migraine. Here are the top eight things I’ve learned as a person living with migraine that may also be helpful to you. 

1. It is important to talk to your health care providers so there is a plan in place to manage your migraine. During this time, it is imperative to have an adequate supply of preventive, and rescue treatments on hand. Advocating for yourself by initiating this conversation with your doctor is key. Find out how you should treat migraine at home, when a televisit would be appropriate, and when an in-person appointment is necessary. These measures may all help to manage your migraine, keep you out of the Emergency Room, and limit your exposure to the virus. In some cases, you may even be eligible to have your migraine medication – like Aimovig ® (erenumab-aooe) – mailed to you.

APPROVED USE
Aimovig ® (erenumab-aooe) is a prescription medicine used for the preventive treatment of migraine in adults.

IMPORTANT SAFETY INFORMATION
Do not use Aimovig ® if you are allergic to erenumab-aooe or any ingredients in Aimovig®.

2. Telemedicine may be a helpful option in managing migraine. During a telemedicine visit, you will either speak with your doctor on the phone or via video chat. You will be able to see and hear them and vice versa. This allows you to check in with your doctor from home which can be helpful, especially during a migraine day. These virtual appointments can help you keep yourself on a schedule as well as provide some sense of “normalcy.”

3. Taking breaks and creating boundaries are a must. While it is very important to stay informed, you must also check in with yourself in order to determine the best plan of action for you. You may find that watching a particular news program or that reading articles about a certain aspect of the pandemic is challenging. It is okay to turn the television off, to put your phone down, and to distract yourself for a while. This does not in any way mean that you aren’t taking the situation seriously. It is just as important to tend to your personal needs as it is to manage your migraine.

Consider setting aside a specific amount of time each day to consume news. Make it a priority to learn from current and reputable sources that are based on facts, logic, and science. You might choose to check the CDC and WHO websites or the Department of Public Health in your state. Briefings from your governor and other state-elected officials may also be helpful. It is important to acknowledge that others may want to know all the latest breaking updates. A boundary can be helpful in this situation. For instance, you may want to compromise if you are watching TV with someone. Making a plan to watch one hour of news and then one hour of sitcoms can help to break up the day. Letting others know how you feel and what choices you are making helps them support you. Be open to hearing their feelings and choices as well.

IMPORTANT SAFETY INFORMATION
Aimovig ® may cause serious side effects, including:

• Allergic reactions. Allergic relations, including rash or swelling can happen after receiving Aimovig ®. This can happen within hours to days after using Aimovig ®. Call your HCP or get emergency medical help right away if you have any of the following symptoms of an allergic reaction: swelling of the face, mouth, tongue or throat, or trouble breathing.
• Constipation with serious complications. Severe constipation can happen after receiving Aimovig ®. In some cases people have been hospitalized or needed surgery. Contact your HCP if you have severe constipation.
• High blood pressure. High blood pressure or worsening of high blood pressure can happen after receiving Aimovig ®. Contact your healthcare provider if you have an increase in blood pressure.

Please see additional Important Safety Information below.

4. Use social media intentionally. For many people living with migraine, social media is a lifeline. It’s a way to connect, socialize, and support each other even while laying alone in a dark room. However, social media can be overwhelming. The COVID-19 pandemic has created a great deal of uncertainty. With stay-at-home orders in place, many turn to social media to ask questions, share their fear, and vent their anger. This can be very cathartic for some and it can be harmful for others. Choosing who to follow and unfollow can help control what’s showing up in your feed. You may choose to take a break from social media or avoid it altogether. It all comes down to self-care and what is best for you.

5. Find new ways to connect with people. During periods of social distancing and stay-at-home orders, it can be very easy to isolate yourself without even realizing it. This can be especially true for people choosing to limit their time on social media. Now is the time to reach out with a phone call, a text, or even some snail mail. Creating a video chat with friends and family can really brighten your day. Look for virtual support groups as well.

6. Start a mindfulness practice. There are many apps and online opportunities to learn about and practice mindfulness. You may want to try a short, guided meditation, a longer body scan meditation, or even some gentle yoga. Every mind, body, and spirit are different so each person’s practice will look different. Mindfulness exercises and guided meditations can help to ground you in the present moment. Even reclining the seat back in your car and just laying there with the windows open can be an opportunity for mindfulness and fresh air on days when you don’t feel well.

IMPORTANT SAFETY INFORMATION
The most common side effects of Aimovig ® are pain, redness, or swelling at the injection site and constipation. Please see additional Important Safety Information below.

7. Consider speaking to a trusted source. A trusted friend or trained professional can be an incredible resource during periods of uncertainty. We are enduring a collective global trauma as a result of COVID-19. Having someone you can confide in to help assess certain situations you’re dealing with could be very valuable.

8. We are weathering the same storm, but we are in different boats. Try not to compare your situation with the situations of others. There are so many factors that go into how people are coping with the pandemic and you may not be able to do what others do and vice versa. Try to find gratitude in what you are able to do and don’t hesitate to take things one day, one minute, one second at a time. Reach out for help if you need it. You are not alone.

*This post is part of a collaboration between myself, Amgen. I have been compensated for my time.

APPROVED USE

Aimovig ® (erenumab-aooe) is a prescription medicine used for the preventive treatment of migraine in adults.

IMPORTANT SAFETY INFORMATION
Who should not use Aimovig ® ?
Do not use Aimovig® if you are allergic to erenumab-aooe or any ingredients in Aimovig® .

Before starting Aimovig ® , tell your healthcare provider (HCP) about all your medical conditions, including if you are allergic to rubber or latex, pregnant or plan to become pregnant, breastfeeding or plan to breastfeed.

Tell your HCP about all the medicines you take, including any prescription and over-the-countermedicines, vitamins, or herbal supplements.

What are possible side effects of Aimovig ® ?
Aimovig ® may cause serious side effects, including: 

• Allergic reactions. Allergic reactions, including rash or swelling can happen after receiving Aimovig ® . This can happen within hours to days after using Aimovig ® . Call your HCP or get emergency medical help right away if you have any of the following symptoms of an allergic reaction: swelling of the face, mouth, tongue or throat, or trouble breathing.
• Constipation with serious complications. Severe constipation can happen after receiving Aimovig ® . In some cases people have been hospitalized or needed surgery. Contact your HCP if you have severe constipation.
• High blood pressure. High blood pressure or worsening of high blood pressure can happen after receiving Aimovig ® . Contact your healthcare provider if you have an increase in blood pressure.

The most common side effects of Aimovig® are pain, redness, or swelling at the injection site and constipation.

These are not all of the possible side effects of Aimovig ® . Call your HCP for medical advice about side effects.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit
www.fda.gov/medwatch, or call 1-800-FDA-1088.

Click here for full Prescribing Information and Patient Product Information.

The Migraine Warrior is Now A Proud Partner of The American Migraine Foundation!

 

 

The Migraine Warrior has joined the American Migraine Foundation to fight debilitating head pain together.

As part of an ongoing commitment to providing meaningful information, resources and support for those living with migraine, I am thrilled to announce a new partnership with the American Migraine Foundation.

The American Migraine Foundation is the official resource for millions of Americans living with migraine seeking reliable information about diagnosis, treatment and advancements in research. Launched in 2010 as a patient support and advocacy effort of the American Headache Society, AMF’s mission is to mobilize a community for people living with migraine and their support networks, and to drive impactful research into the third most common and sixth most disabling disease around the globe.

“The Migraine Warrior is a cornerstone organization in the migraine world. It is truly an honor to work side by side as we #MoveAgainstMigraine,” says American Migraine Foundation Executive Director Meghan Buzby. “We look forward to continuing to make an impact together.”

Like The Migraine Warrior, the American Migraine Foundation is dedicated to helping people with migraine live meaningful and pain-free lives. I’m so excited to join forces with AMF to provide support, advocacy and treatment innovations to people living with this disabling disease.

The American Migraine Foundation supports people living with migraine by providing free, comprehensive information sourced directly from headache specialists, by maintaining a searchable database and map to improve access to headache specialists, by investing in research efforts towards new, innovative treatments, and by creating support networks and communities where people with migraine can support and learn from each other.

Together, we are as relentless as migraine.

#MilesForMigraine – Virtual Race

Hi! My name is Michelle Tracy (also known as The Migraine Warrior) and I am a patient advocate for migraine disease and other headache disorders. I was diagnosed with chronic migraine disease 13 years ago at the age of 19. Shortly after my diagnosis, I began to write as a way to process my feelings about this chronic and incurable disease that seemed to descend upon me overnight. Soon, I became involved in online and local advocacy work and The Migraine Warrior blog and Facebook page were born. In the past few years, I’ve had a variety of incredible opportunities to work with doctors and other patient advocates as we work to raise awareness, educate, and erase the stigma associated with migraine disease. I’ve met friends who have become family. This year I am participating in the Miles for Migraine Virtual Race. This means that I can complete the 1 mile walk in my own neighborhood during the month of October whenever I am feeling up to the challenge. My plan is to complete it on Sunday October 15, 2017 to coincide with the Miles for Migraine Event that will be taking place that day in Washington, D.C. Could you please help me reach or exceed my pledging goal of $500? Any donation is appreciated. If you’re unsure about what amount to give, might I suggest $33 in honor of my 33rd birthday which is on October 27? Or perhaps you’d like to donate $13 since it has been 13 years since I was diagnosed with chronic migraine disease? How about $4 since I was diagnosed in ’04? Whatever amount feels right to you is much appreciated. Thank you so much for all of your continued support and please don’t forget to share this with other folks who may want to donate. Thanks! Click here to donate! Want to know more about Miles for Migraine? Click here!

Handy Guide to All Things Migraine & Headache Awareness Month June 2017

June is Migraine and Headache Awareness Month #MHAM. There is so much excitement in the air about many great campaigns, it can get a little confusing. The Migraine Warrior, Michelle Tracy, @chedeco, and Katie M. Golden, @GoldenGraine, have teamed up to break it down for you. You’re reading this post on Michelle’s blog. If you’d like to learn more about Katie, head over to Golden Graine!

Whether you want to just share a post, blog about a given topic, take photos of you in migraine-related apparel, attend an in-person event or participate in a walk or run, there is something for everyone. Follow the hyperlinks for more information on each initiative. It’s kind of like “choose your own adventure!”

Share and Make Aware

• INvisible Project – Migraine Edition– The INvisible Project is a magazine sponsored by the US Pain Foundation. It highlights the personal strength, character, and courage of those living with invisible illnesses by sharing personal stories and photos. The ultimate purpose is to educate society about the toll pain has on an individual while also empowering those who live with pain and illness. The INvisible Project has released its first disease-specific edition, choosing to highlight migraine disease.  Each day a quote from the participants will be shared in the afternoon, illustrating the raw truth about living with migraine disease. Don’t forget to like their Facebook page and Twitter to get quotes to share. Want a hard copy for you or to share with loved ones or doctor’s offices? Click here. Suggested hashtags: #INvisibleProject #MigraineMatters
• Migraine.com– Look out for unique content from videos, presentations, patient perspectives and honest answers from contributors. Follow their Facebook page and Twitter to share content you find useful.
• Move Against Migraine’s Day of Action– Sponsored by the American Migraine Foundation, June 8^th has been designated as a Day of Action. Sign up with Thunderclap to pledge your online support via Facebook, Twitter, and/or Tumblr. Everyone who signed up for the Day of Action will have a one-time message shared on their social media accounts at 4:30 pm EDT. This will flood various social media outlets with messages of support for migraine awareness, all at the exact same time, around the world. Suggested hashtags: #MoveAgainstMigraine.
• Migraine Ninja Blogging and Social Media Challenge– The Migraine Ninja Blog has created daily social media posts, complete with hashtags and web links, ready to be cut and pasted into your social media. The Blogging Challenge is discussed in detail below. Suggested hashtags: #MHAM #MHAMSMC #Migraine #Headache #ClusterHeadaches
• Chronic Migraine Awareness, Inc’s “Take the Challenge”- Each day a question or prompt will be posted on their Facebook page, asking you to share different aspects of your migraine life. Suggested hashtags: #MHAM #MigraineMatters #CMAware
• American Headache Society & American Migraine Foundation Twitter Chat– Wed, June 7 at 5pm EST. The topic is Managing Migraine: From Understanding Your Triggers to Getting Help and Emerging Treatment Options. Follow #AHS17BOS on Twitter.
• American Headache Society– Webcast from the 59^th Annual Scientific Meeting on Thurs, June 8^th at 9am with Q&A to follow. Hosted by Peter Goadsby, MD, Ph.D., FAHS, AHS Scientific Program Committee Chair, Professor of Neurology, King’s College London and the University of California, San Francisco, and Director, NIHR-Wellcome Trust King’s Clinical Research Facility, King’s College Hospital, London. The discussion will include the latest advances in research, pharmacological and non-pharmacological treatments, and disease epidemiology. Please submit questions prior to the webcast to janet.turley@inventivhealth.com. Sign up for the webcast here.

It’s Selfie Time!

• Association of Migraine Disorders’ World Migraine Solidarity Day & Shades for Migraine– June 21st is the longest day of the year, making it the perfect day to wear sunglasses all day long – a reference to the photosensitivity commonly experienced by those with migraine. Take a selfie while wearing cool shades and post it to social media using the hashtag #ShadesForMigraine. Get your friends and family involved. It’s an easy and effective way to show your support for the migraine community. Join the Thunderclap campaign to amplify the reach of this campaign on June 21^st. Follow them on Facebook & Twitter. Suggested hashtags: #ShadesforMigraine #WorldMigraineSolidarityDay
• Migraine Idaho’s Haturday for Headaches– buy their specially designed hat here by June 7^th and wear on June 24^th. Sign-up for the event here and like their Facebook Page, Twitter, and Instagram. Take a selfie on June 24^th wearing your hat and share on social media using #haturdayforheadaches. Funds raised by this campaign will be donated to the Migraine Research Foundation.

Put Pen to Paper

• National Pain Report Mygraine Stories- The U.S. Pain Foundation has partnered with The National Pain Report in June to feature the stories of U.S. Pain Foundation Ambassadors who are living with migraine disease. These personal narratives will be shared on The National Pain Report’s website, Facebook page, and Twitter. The U.S. Pain Foundation will also share on their social media platforms, newsletters, and website.
• Migraine Ninja Blogging and Social Media Challenge– As detailed in the “Share and Make Aware” section above, The Migraine Ninja Blog gives bloggers daily prompts to use as inspiration during Migraine & Headache Awareness Month. If you don’t have a blog, post your response on Facebook. The blogging challenge goes hand in hand with their social media statements mentioned above. Consider doing both! Suggested hashtags: #MHAM #MHAMSMC #Migraine #Headache #ClusterHeadaches

Wanna Meet Your “Migraine Family” In Person?

• 5^th Annual American Headache & Migraine Association (AHMA) Patient Conference– AHMA’s conference onSunday June 11 will be held at the Westin Boston Waterfront from 9am to 6pm. This event is a great opportunity to learn from some of the best and brightest doctors and advocates in the migraine and headache disorders community as well as to network with fellow migraine patients. Caregivers, friends, and family are also encouraged to attend, with a break-out session devoted just to them. You can register in person.
• Association of Migraine Disorders’ Mad Hatter Party– On Friday, June 23, The Association of Migraine Disorders is hosting their 3^rd Annual Mad Hatter Party at The Squantum Association in Riverside, Rhode Island from 6pm to 9:30pm. This is a fundraising event that will feature dinner, live music, and an awards ceremony honoring this year’s most impactful and influential people in the migraine community. The Impact Award recipient is Katie M. Golden and the Innovation Award recipient is Dale Bond, Ph.D. of Brown University. Prior to the main event, there will be a panel discussion from 4:30pm -6pm on hot topics in migraine. Tickets are still available and are discounted for first-time attendees.
• Chronic Migraine Awareness, Inc’s Medical Marijuana for Migraine Patient Info Dinner– Wed, June 28 from 6pm-7:30pm in Buffalo, NY. Dinner and a conversation on how medical marijuana fits into a migraine management plan.

Fundraising Fun

• Danielle Byron Henry Migraine Foundation’s “Shine Her Light” Fundraiser-This foundation was established in 2016 to increase awareness of migraine disease and its impact on patients, their families, and society. Their ultimate goal of our foundation is to help build a comprehensive migraine treatment center in Utah. On Friday, June 16 starting at 6:00pm, the Shine Her Light Fundraiser will be held in Salt Lake City, UT. There will be dinner, live band, and a silent auction. Tickets can be purchased here.
• Miles for Migraine June Virtual Challenge– Miles for Migraine has three charity walk/ races planned for the remainder of the year in San Francisco, Washington, DC and Philadelphia. For June, they are promoting a “virtual race,” with a goal to have participants create teams and fundraise in all 50 states. If you can’t physically attend a race, consider raising funds and spreading awareness in June through a virtual race.
• Race Against Pain: Cluster Headache Awareness– Join the Inaugural fundraising walk/race for Race Against Pain on Sat, July 17^th from 7:30am – 12pm in Centennial, Co. 100% of the profits will go towards cluster headache research. You can register here. Oxygen tanks will be available for participants with cluster headaches, but you must bring your own mask. There will be refreshments available and aid stations placed along the route and a raffle at 10am. There is also a playground a few hundred feet from the shelter.

Pick one, pick ’em all. Let’s work together to educate and end stigma.

Did we miss something? Let us know!

-Michelle & Katie

3 Great Ways to Participate in Migraine & Headache Awareness Month 2017!

June is upon us and you know what that means: it’s time to break out your purple clothes and get ready to raise awareness for migraine and other headache disorders! Why purple? Because purple is the awareness color for headache disorders! Some folks stick with purple shirts or shoes or socks but other sport purple jewelry, purple hair, and even purple tattoos! Purple of any kind is great conversation starter so find whatever makes you feel the most fabulous and get ready to advocate! 

There are a ton of great ways to get involved with #MHAM. I don’t want overwhelm you, so I’ll start you off with three of my personal favorites (words in italics are direct quotes from the websites listed):   

1.) Migraine and Headache Awareness Blogging and Social Media Challenge by Migraine Ninja:

“June is just around the corner, and it’s Migraine and Headache Awareness Month. Social media — blogging, Twitter, Facebook, etc. — is a great way to promote awareness. A unified message spread via social media can be extremely powerful. So we’ve put together daily prompts for an Awareness Month Social Media Challenge. The challenge isn’t a contest to see how many days people will participate. It’s simply a challenge to join us and participate as many days as you can and want to. We also hope you’ll use the provided images to help unify the campaign. Participation in the Blogging and Social Media Challenge doesn’t mean that you have to participate every day. If there are days when you’re not well enough or are too busy, that’s fine. Every bit of participation counts, helps, and is greatly appreciated.”

2.) Move Against Migraine Day of Action by The American Migraine Foundation:

“Please join us on June 8, 2017 for the first ever Move Against Migraine day of action! We are mobilizing people across the country to come together and show their support for the millions of Americans living with migraine by joining the Move Against Migraine Thunderclap. Thunderclap is a crowdspeaking platform that mass-shares a single message on social media channels (Facebook, Twitter and Tumblr) at the same date and time. The result is a unified rallying cry that amplifies the voice of the migraine community. As you may know, we launched Move Against Migraine to change the conversation around the disabling neurological disease. The initiative strives to mobilize and empower individuals living with migraine to advocate for themselves to find the support and treatment they need, as well as inspire support and funding for research that will lead to safe and more effective treatments. To add your voice and join the movement: Visit our Thunderclap page before June 8 and pledge your support with Facebook, Twitter or Tumblr. Share with your friends, family and colleagues to help drum up support and join the Thunderclap to help further spread awareness in days leading up to June 8.” 

3.) World Migraine Solidarity Day by The Association of Migraine Disorders:

“For some of us, June 21 is the longest day of the year.  We thought it would be an appropriate day to show solidarity with those who have to live with this invisible, unpredictable and stigmatized disease. Migraine disease is more common than Alzheimer’s disease, Parkinson’s disease, epilepsy and multiple sclerosis combined.  Shocking, huh?! You may also be surprised that despite that fact it only gets a small fraction of the available neuroscience research funding and there is a very small number of neuroscience researchers who decide to take on migraine as a project. Migraine disease is not getting the attention it deserves; all the while, millions of people are suffering year after year behind closed doors. So…on Wednesday, June 21, let the world know about it!  Let the millions of sufferers know that you care…that you know they aren’t faking an illness…that you know much more needs to be done to find a cure and give them relief…that you want to help give migraine disease the prominence it deserves. Wear some sunglasses all day long.  They just need to be visible…hanging around your neck, hanging from your shirt or propped on your head are options if you can’t wear them on your face the entire day. Wear them indoors and in places where people usually don’t wear sunglasses. Be silly. Wear goofy ones if you dare. Let them make a statement…  Start a conversation…Post a photo of yourself (and friends/co-workers) wearing your Shades for Migraine on social media using the hashtag #ShadesForMigraine. We are trying for a “viral” awareness campaign! Share this campaign with your friends and family…let’s make migraine a big deal!”

Keep your eyes on this space for more ways to get involved, updates on my own Migraine & Headache Disorders advocacy work, and more! Don’t forget to head over to The Migraine Warrior‘s Facebook page for even more great info! Happy #MHAM! 

 

Let’s All #MoveAgainstMigraine!

 

Click the above image to be redirected to the American Migraine Foundation’s #MoveAgainstMigraine Campaign

 

I am excited to announce the American Migraine Foundation’s new campaign to #MoveAgainstMigraine! AMF posits that “together we are as relentless as migraine.” As someone who has been living with chronic migraine disease since 2004, I am thrilled to see migraine disease in the spotlight and I am hopeful that this renewed energy and attention will raise both awareness and funds for this debilitating neurological disease. There is a Move Against Migraine Group on Facebook that you can request to join that already has several thousand members. I look forward to seeing you there, especially on Thursday evenings when AMF features Facebook Live videos from migraine experts who speak on a particular topic as well as answer questions from migraineurs and caregivers alike. For more information, click on the image above and/or scroll down to see the official press release from The American Migraine Foundation. And be sure to share this post/information with everyone you know! As I am fond of saying, I believe that #CaringIsCuring and this campaign aims to not only show migraineurs that they understand and empathize with the challenges of migraine disease, it also aims to show others why they should care about migraine disease. Let’s all #MoveAgainstMigraine!

 

THE AMERICAN MIGRAINE FOUNDATION LAUNCHES INITIATIVE TO MOBILIZE THE 36 MILLION AMERICANS LIVING WITH MIGRAINE, A DISABLING NEUROLOGICAL DISEASE

Move Against Migraine illustrates the hidden truth about migraine

The American Migraine Foundation (AMF) announced this month that it is launching an initiative – Move Against Migraine – to empower the more than 36 million Americans living with migraine to advocate for themselves to find the support and treatment they need. Given the lack of awareness of the varied symptoms that can occur during migraine attacks and the long-standing stigma associated with this disease, less than 5% of those with the most debilitating form of migraine have sought help, received a diagnosis, and been treated.¹

“Migraine is a neurological disease that costs our healthcare system more than $20 billion each year,” said David Dodick, MD, FRCP (C), FACP, FAHS, chair of the American Migraine Foundation, president of the International Headache Society and professor of neurology at the Mayo Clinic in Arizona. “For more than 90% of those affected, it interferes with education, career and social activities, yet many people don’t get the help they need. Move Against Migraine mobilizes patients to become self-advocates to live healthy and fulfilling lives, and inspire support for research that will lead to safe and more effective treatments.”

Move Against Migraine aims to help individuals learn more about migraine and treatment options, as well as assist them in finding help by accessing migraine experts and resources. Additionally the initiative connects individuals with others in the community living with migraine, as well as doctors and researchers in the field. It integrates advertising, public relations, social and digital media, as well as radio and television public service announcements. The imagery of the initiative is boldly conveyed through original and compelling artwork.

“As someone who suffered in silence for years from migraine, I am grateful for the creative spirit behind the Move Against Migraine initiative,” said Lisa Jacobson, a migraine patient, founder of The Daily Migraine online support group, and AMF board member. “The imagery provides a candid depiction of how I and so many others feel during a migraine attack, and it helps illustrate the reality of the migraine experience for friends and family.”

For those impacted by migraine, resources and tools about AMF and Move Against Migraine can be found at www.americanmigrainefoundation.org.

About migraine

Migraine is a major disabling neurological disease that affects more than 36 million men, women and children in the United States. The disease impacts one in four households, one in five women, one in 16 men and one in 11 children in the United States. Globally, migraine is the sixth highest cause of years of life lost due to disability. Individuals who experience migraine have symptoms that include nausea, sensitivity to light and/or odors, skin sensitivity, fatigue, mood change, dizziness, difficulty concentrating, neck pain, and changes in vision, including seeing spots, stars, lines, flashing lights and zig zag lines. The risk of other serious diseases is significantly higher in those with migraine, including stroke, epilepsy, depression, anxiety and chronic pain. Despite of 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.

About The American Migraine Foundation (AMF)

The American Migraine Foundation (AMF) is a non-profit organization dedicated to the advancement of research and awareness surrounding migraine, a disabling disease that impacts 36 million men, women and children in the United States. The AMF was founded in 2010 to provide access to information and resources for individuals living with migraine, as well as their loved ones. Working alongside the American Headache Society, the AMF’s mission is to mobilize a community for patient support and advocacy, as well as drive and support innovative research that will lead to improvement in the lives of individuals living with migraine and other disabling diseases that cause severe head pain. For more information, please visit www.americanmigrainefoundation.org.

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¹ Dodick DW, Loder EW, Adams AM, et al. Assessing Barriers to Chronic Migraine Consultation, Diagnosis, and Treatment: Results From the Chronic Migraine Epidemiology and Outcomes (CaMEO) Study. US National Library of Medicine National Institute of Health. doi: 10.1111/head.12774. Published May 3, 2016.

² Global Burden of Disease Study 2013 Collaborators (2015) Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet (published online June 8, 2015 at http://dx.doi.org/10.1016/S0140-6736(15)60692-4)

Calling all Migraine Warriors!

Do you own one of these purple “Migraine Warrior” shirts? They were originally offered in three styles: t-shirt, hoodie, and tank (not pictured.) I’m going to make a collage using pictures of folks in their purple “Migraine Warrior” shirts for #Migraine & #Headache #Awareness Month (#MHAM.) If you’d like to be included, please e-mail me a picture of yourself wearing your purple “Migraine Warrior” shirt at the following address:

themigrainewarrior@gmail.com.

I’d love to get as many people as possible to participate. If you don’t have a purple “Migraine Warrior” shirt but would like one, please comment below. If there is enough interest, I will re-open the campaign. A portion of the proceeds will go to The American Headache and Migraine Association (#AHMA.) Thanks in advance for your help! 💜💜💜

The Migraine World Summit: Medical Cannibis

Access the Migraine World Summit

The Migraine World Summit is going on as we speak and it’s an opportunity for you to access some of the best and brightest minds in the field of migraine and headache disorders without even having to get out of bed. I’m furiously taking notes which I will make available here on my blog soon. In the meantime, I’d like to urge you to take advantage of this opportunity by clicking on the link above and watching as many of the interviews as possible. You can also purchase an all-access pass that allows you to access all of the interviews and additional information at any time, even after the summit has concluded. With this option, you can watch the interviews at your leisure, stopping and starting as you please, without feeling pressed for time.

In my previous post, I wrote briefly about Dr. Robert Cowan’s lecture on migraine causes and triggers as well as the increasing role of technology in the diagnosis and treatment of migraine. It’s a must-see interview for anyone living with migraine.

Today, I’d like to suggest that you watch the interview with Dr. Eric Baron from the Cleveland Clinic Neurological Institute. He gives a fascinating history of medical cannibis (marijuana) as well as a summary of how it’s being used today for a variety of conditions, including migraine and other headache disorders. He gives an in-depth look at the political climate that affects the use of marijuana both medically and recreationally as well as discussing the challenges faced by doctors, patients, and researchers seeking more information about medical cannibis in the United States. (Though 23 states, as well as Washington D.C. have voted to legalize medical cannibis, it is still illegal at the federal level.) I’ll post a longer summary once I’ve organized my notes but I suggest you watch this interview yourself as well. Perhaps you may even opt to share this with your migraine/headache specialist. I hope you enjoy Dr. Baron’s presentation as much as I did. Feel free to leave comments on this post or to e-mail me at themigrainewarrior@gmail.com with any further comments or questions. Wishing you a low-pain day and hoping that you are as well as possible.

The Migraine World Summit

The Migraine World Summit is taking place right now! Take this opportunity to Learn From 32 World Leading Migraine Experts, Doctors & Specialists. The Migraine World Summit is Free Online From April 15- 20, 2016.

There are a wide variety of topics being discussed by some of the top migraine experts in the world and you don’t even have to leave your bedroom to attend! Simply head over to https://www.migraineworldsummit.com/ and start watching the speakers at your own convenience. So far, my favorite interview has been with Dr. Robert Cowan from Stanford University. He discusses migraine triggers and causes (there’s a difference between the two!) as well as the increasing role that technology plays in diagnosing and treating migraine.

If you missed an interview, don’t worry. Each video is available for free for 24 hours after it’s initial posting. Want access to all of the videos and information for longer than 24 hours? Click the following link to purchase an All-Access Pass to The Migraine World Summit:

https://www.migraineworldsummit.com/idevaffiliate/idevaffiliate.php?id=104