Suicide Prevention Awareness

September is National Suicide Prevention Month. September 10 is World Suicide Prevention Day.

Photo by Thought Catalog on Unsplash

Suicide is something that hits close to home for so many people, yet we often don't talk about it. There is a lot of shame, guilt, and stigma associated with mental health and suicide. 

We need to talk about our mental health. 

I've shared some about my experiences with depression, anxiety, post-traumatic stress disorder (PTSD), panic attacks, grief, loss. It's all part of my journey and it's important to share so others know they're not alone. 

You're not alone.

My cousin died by suicide in 2020. It's a heartbreaking and complicated loss. The stigma around suicide affects how we process the loss and grieve. For me, I found that it's further complicated in light of experiencing deep depression and suicidal thoughts at various times in my own life. 

I do my best to speak about mental health, chronic illness, and suicide with honesty, vulnerability, and language that reduces the shame, guilt, and stigma associated with them. Life is hard enough without these piled on. 

You matter. You are enough. You are not alone.

*The following resources include additional information, support, and helplines*

Awareness

• The American Foundation for Suicide Prevention (AFSP) highlights the Talk Away the Dark campaign: "There are countless ways you can help Talk Away the Dark by initiating open conversations about mental health; speaking up and making sure more people know what research reveals about how we can help prevent suicide; lighting the way for those in distress to feel comfortable asking for help; and knowing what to say to support survivors of suicide loss and provide them the care they need." 

About Suicide

• Globally, more than 700,000 people die due to suicide each year, that's about one suicide every 40 seconds. (WHO, Suicide Prevention Fact Sheet and Suicide – TWLOHA)
• In the U.S. (2021), there is a suicide every 11 minutes. (Suicidology, Fact Sheet)
• Suicide is the 10th leading cause of death for Americans. (CDC, Fact Sheet" and Suicide – TWLOHA)
• Suicide is the 2nd leading cause of death for Americans ages 10-34. (CDC, Fact Sheet" and Suicide – TWLOHA)
• Males die by suicide four times as often as females, but there are three female attempts for every male attempt. (Suicidology, Fact Sheet and  (Suicide – TWLOHA)
• In 2012, the US Department of Veteran Affairs (VA) released a data report for suicides among veterans and active military members, indicating that an average of 22 die by suicide every day. (22Kill and Mission22)

Resources

• American Foundation for Suicide Prevention (AFSP)
• World Health Organization (WHO) (mental health and suicide data)
• American Association of Suicidology (AAS)
• National Alliance on Mental Health (NAMI)
• To Write Love On Her Arms (TWLOHA): "A nonprofit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide."
• The Jed Foundation: "A nonprofit that protects emotional health and prevents suicide for our nation’s teens and young adults, giving them the skills and support they need to thrive today…and tomorrow."
• The Trevor Project: "We provide information & support to LGBTQ young people 24/7, all year round."
• 22KILL (One Tribe Foundation): "Restore the value of life by empowering veterans, first responders, and their families."
• Mission 22: "Our Veteran non-profit offers programs at no cost to all participants. We focus on three main pillars—Veterans, families, and community."
• Talk Away the Dark: Resources to learn the warning signs, know the risk factors, and have real, open conversations with those you care about.
• 988: We can all prevent suicide: Know the risk factors, warning signs, help others in crisis, and change the conversation around suicide.

Helplines

• 988 Suicide & Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) at 988 or text TALK to 741741. For those that are deaf and hard of hearing, use your preferred relay service or dial 711 then 988. Spanish is also available.
• Crisis Text Line (24/7): text TALK or AYUDA to 741741 or chat online to connect to a trained crisis counselor for free, 24/7.
• NAMI (National Alliance on Mental Illness) Helpline (M-F 10am-6pm ET): 800-950-NAMI (6264) or info@nami.org
• Veterans Crisis Line (24/7): dial 988 (press 1), text 838255, chat online
• Additional 24-hour helplines (including child abuse, domestic abuse, sexual abuse)

If you, or someone you know, is in suicidal crisis or emotional distress, please call the 988 Suicide & Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) at 988 or text TALK to 741741. For those that are deaf and hard of hearing, use your preferred relay service or dial 711 then 988.

Shades for Migraine 2020

Today, June 21, is Migraine Solidarity Day (aka, Shades for Migraine).

Shades for Migraine is a global campaign hosted by the Association of Migraine Disorders to promote migraine awareness and show support for the 1 billion people living with migraine disease worldwide. 

The collaborative campaign is simple to participate in: wear a pair of sunglasses of June 21, post a photo to social media with the hashtag #ShadesForMigraine, and challenge others to take part, too.

"Show you care, wear a pair."

Quick shoutout to my Dad: Happy Father's Day! 

© 2020 Jamie V.

 

© 2020 Jamie V.

© 2020 Jamie V.

Headache on the Hill Fundraising Event

Taking part in headache disorders advocacy is an important part of my journey living with chronic pain. While I participate in advocacy work throughout the year, one of my favorite events is Headache on the Hill (HOH) - you can follow the link to read about my HOH 2020 experience.

HOH is an annual event that brings together a large group of advocates in DC to share our stories, and call on lawmakers to recognize the impact and take action to reduce the burden (individual and societal) of headache disorders.

The Alliance for Headache Disorders Advocacy (AHDA) organizes the annual HOH event and covers one night hotel for each attending advocate. Most advocates must cover the remaining travel costs out of their own pockets.

In order to support the HOH event and provide assistance with travel scholarships for advocates to participate, Miles for Migraine is collaboratively* hosting a first-annual walk/run/relax fundraiser event from June 29 to July 7. 

There are a few different ways you can show your support: 

• Donate (any amount is greatly appreciated)
  
• Participate by walking, running, or relaxing (from 6/29 to 7/7)
  
• Share this post on social media 

© 2020 Jamie V.

This link takes you to the event page: HOH walk run relax event. From there, you can Pledge a Team (Chronic Migraine Warrior), Donate to a Participant (Jamie Valendy), or Register (and join my team). 

This link takes you to my team page: Team Chronic Migraine Warrior. From there, you can Make a donation or Join my team.

Please join me!

"Each one of us can make a difference. Together we make a change." - Barbara Mikulski

*Participating non-profit organizations for this event include:

• Miles for Migraine
  
• Coalition of Headache and Migraine Patients (CHAMP)
• National Headache Foundation (NHF)
• Clusterbusters
• The Headache and Migraine Policy Forum (HMPF)
• Headache Cooperative of New England
• Headache Cooperative of the Pacific
• Southern Headache Society
• American Migraine Foundation (AMF)
• US Pain Foundation
• Danielle Byron Henry Migraine Foundation
• Association of Migraine Disorders (AMD)

Migraine World Summit 2020 Replay

The Migraine World Summit is a virtual event that broadcasts interviews from over 30 leading experts, including doctors and specialists, to share about treatments, research, and strategies to help you manage and improve your headache disorder. 

The 2020 event took place in March. Due to the significant challenges we’re facing in the midst of the Covid-19 pandemic, the event is being offered again from June 10-19. 

The event is FREE: the interviews will be open according to the event schedule (4 per day, plus 1 webinar), changing each day at 6pm ET. You can access the interviews directly on the website free for 24 hours. If you’d like to have lifetime access to the interviews, you can purchase the Summit All-Access Pass (affiliate link).

Register for free: Migraine World Summit 2020 Replay

Tune in June 9 at 5pm ET for a Live Pre-Summit Q&A with Hosts, Carl Cincinnato and Paula Dumas. They’ll explain why the Summit is being replayed, what’s new about the June Replay, and answer other questions. It’s free to join, but you must register beforehand. Click the link to register (no sign up required) for the Live Pre-Summit Q&A.

Wear Purple & Headache at Work

June 1 is the first day of Migraine and Headache Awareness Month (MHAM). Today, we’re highlighting a headache awareness initiative and headache at work. 

© 2020 Jamie V.

Wear Purple to Work (at Home)

The National Headache Foundation (NHF) created an initiative to help promote migraine and headache awareness: Wear Purple to Work (at Home). On June 1, wear purple and share a photo on social media to show solidarity for the 40+ million people in America living with headache disorders. 

When you share on social media, please use the hashtags: #MHAM #MHAM2020.

Headache at Work

Work often includes facing a slew of headache and migraine triggers that can stack and result in increased attacks: bright lights, computer screens, strong odors / scents, loud noises, stress, rigid schedules and deadlines, the list goes on. 

Many people are working from home during the pandemic. For some, work being moved to a virtual / from home format is proving to allow the flexibility needed to be a more productive worker and have improved quality of life.

It’s unclear what the work landscape will look like, as more workplaces decide how to move forward. It remains important to recognize the need for employer accommodations for those living with headache disorders. Hopefully these months of virtual workplaces will provide the evidence needed for companies to consider offering employees more options moving forward. 

Once workplaces bring people back to the office, the Migraine at Work campaign provides tools and resources for employers and employees to utilize. 

"I don't have a dis-ability, I have a different-ability." - Robert M. Hensel

Headache on the Hill: Behind the Scenes

As I began writing about my Headache on the Hill 2020 experience, I found a post that was written but never posted from last year's event. The following post is from 2019, though much of it is timeless.

Photo by Ian Schneider on Unsplash

In writing about my experience and the asks of Headache on the Hill (HOH) 2019, I realized that there's another side that needs to be shared.

Every person that went through the process to participate in HOH has their own story of the event. Some people weren't able to make the trip because of health, financial, or other reasons. Some pushed to make the trip, but were then unable to attend training and/or their meetings on the Hill because of health. Some pushed to participate, and then crashed hard afterward.

Headache diseases can be unpredictable. And, everything that participating in a lobbying event like HOH entails adds up and can be difficult to do while living with the uncertainty of chronic health conditions.

Sometimes you can push through, and sometimes you can't. There is no shame in that. Oh! But, I know that those unable to attend their meetings were overwhelmed by enormous emotions.

Traveling alone

I haven't traveled much alone, since I became chronic after my car accident in 2008. My husband and I have traveled, but my only solo travel has been to visit and stay with family. Attending HOH was the first non-family related travel that I ventured out on my own. I was both excited for the independence and anxious about managing on my own. Knowing that I had friends also attending HOH helped put my mind at ease.

The day before the HOH training was a travel day for me. I flew across the country alone. Time in a plane is hard on the body, and I was hurting badly, when I arrived in Washington, D.C. I made it to the hotel, checked in, and collapsed onto my bed. A friend of mine invited me to dinner and encouraged me to come, despite my exhaustion and pain. I appreciated being around people that get it, and I know that my body needed an actual meal after a day of snacking. I made it back to my room after dinner, but I was completely spent. The weather outside was worsening, and my head and body pain mirrored that.

Reaching out for support

I reached out to my sister, in tears. The exchange of messages revealed the spiral that pain often takes me on.

"When I hurt, my brain catastrophizes. I'm trying to not be overcome with thoughts about not being prepared tomorrow, should I take meds today, if I take today I can't take more tomorrow, etc... It's just a spiral I go through. It's hard."

My sister doesn't experience migraine herself. She has a truly beautiful heart, though, and has taken note of things that I've mentioned help me in the past. She recommended heat... all I had were hand warmers, but she encouraged me to use them to try to help manage the pain (specifically my neck pain).

One thing that I appreciated was that she made a couple simple recommendations (heat and ice), which can sometimes slip my mind. She acknowledged what she wasn't equipped to guide me on. Through it all, she offered me what I needed most... herself. Knowledge that I wasn't alone. Prayers being sent up on my behalf. Reminders that my my painful groans are wordless prayers that reach our Father, when we cannot find the words. Sharing a beautiful song to speak truth to my heart in a way that it could hear it. The song she sent on that night: Fear is a Liar by Zach Williams.

The person that was supposed to be my roommate wasn't able to make it because of a status migraine, but she did her best to try to help from afar... even going so far as to try to get some supplies delivered to me to help me through the attack.

I ended up treating the migraine attack, and made it through the night. My mind and body felt the effects of the battle that had raged on the previous day, but I was able to attend the training day. After training, I gave my body rest and quiet.

The day we went to the Hill for our meetings, one of the people in my group was having a bad migraine attack. I offered support in the ways that I was able to, and checked up on him throughout the day. We shared that he was missing the day's meetings due to a migraine attack, which highlighted the impact of this disease.

I've observed, heard others' stories, and experienced first-hand, the love and support that this community has among its members. There is an often unspoken understanding that we all experience pain and other symptoms, allowing for deeper connections and support in ways that can feel like home. There is such great power and hope in knowing that we're not alone.

“Give your weakness to one who helps.” - Rumi

Headache on the Hill 2020

This week, I joined a group of 174 advocates from 45 states in Washington, DC at the 13th annual Headache on the Hill lobbying initiative, which is organized by the Alliance for Headache Disorders Advocacy (AHDA).

2020 Headache on the Hill

This was my second time participating in Headache on the Hill (Headache on the Hill 2019: My Experience). We spent Monday in training and preparing for our Hill visits. On Tuesday, we loaded onto buses to head to the Capitol for a group photo, before splitting up to head to our congressional meetings.

Team Arizona

Team Arizona

The group for Arizona was made up of six amazing advocates: Kerrie Smyres, Dr. Amaal Starling, Amy Tees, Jenn Tingwald, Jamie Valendy, and Don Vanderpool.

We had a full schedule, meeting with the offices of: Senator Kyrsten Sinema, Senator Martha McSally, Representative Greg Stanton, Representative Ruben Gallego, Representative Paul Gosar, Representative David Schweikert, Representative Ann Kirkpatrick.

Our meetings went well, and we were able to make some connections with the staffers we met with. I never cease to be amazed at the prevalence of headache disorders. Everyone has some connection to them. It reminds me that my voice and story speak for so many others that live with migraine or other headache disorders... and that gives me a push to continue advocating.

Migraine Impact

The impact that migraine has on individuals, families, and society is profound. Sharing my story with legislators gives a face to the disease, while sharing statistics speaks to the pervasiveness and burden of migraine and other headache disorders. 

Migraine is a prevalent and serious public health issue:

• Migraine is the 2nd leading cause of disability in the United States (1).
• 47 million Americans will have migraine attacks this year (1).
• 5 million Americans with migraine will have 10 or more days with headache per month (2).

Migraine is part of the Chronic Pain Crisis in the United States:

• There are more than 1.2 million emergency department visits for migraine annually in the United States (3).
• 59% of emergency department visits in the United States for migraine include opioid treatments (2).
• Opioids are not indicated for the treatment of migraine (4), and opioid use may increase the frequency and severity of migraine attacks (5).

Migraine disease management requires patient access to headache medicine physicians:

• At least 8 headache medicine physicians are needed per 100k people with migraine (6).
• There are currently only 1.2 certified headache medicine physicians per 100k people with migraine in the United States (7).

There are only 574 headache specialists in the United States (6). Given the prevalence and burden of all headache disorders, the disparity of current and needed headache specialists is devastating.

The 'Asks'

The United States is facing a huge shortage of doctors, including specialists (8). The Opioid Workforce Act H.R.3414 / S.2892) would fund 1,000 new physician training positions in addiction medicine, addiction psychiatry, and pain medicine.

However, there is a problem with the bill language. It explicitly supports "approved residency training programs in... pain medicine." However, residency training programs do not exist in pain medicine. There are only approved fellowships in pain medicine. There is also no specific mention of headache medicine, which also has only fellowships.

The asks:

• Urge amendment to H.R.3414 / S.2892 to ensure support of US physician training in:
• ACGME-accredited pain medicine fellowships
• UCNS-accredited headache medicine fellowships
• Co-sponsor the bill and support pain medicine and headache medicine fellowships.

Advocacy Work

Taking part in advocacy work is an important part of my journey living with chronic pain. Being surrounded by others that are passionate about coming together as a unified voice for all people living with headache disorders fills me with hope. There is power in sharing our stories and making connections with others. I'm honored to have been able to participate in Headache on the Hill, again; and I look forward to continuing to do so. 

"Unity is strength... when there is teamwork and collaboration, wonderful things can be achieved." 

- Mattie Stepanek

Sources:

(1) GBD 2016 Headache Collaborators (2018). Global, regional, and national burden of migraine and tension-type headache, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet. Neurology, 17(11), 954–976. https://doi.org/10.1016/S1474-4422(18)30322-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6191530/.
(2) Blumenfeld, A., Varon, S., Wilcox, T., Buse, D., Kawata, A., Manack, A., Goadsby, P., Lipton, R. (2011). Disability, HRQoL and resource use among chronic and episodic migraineurs: Results from the International Burden of Migraine Study (IBMS). Cephalalgia, 31(3), 301–315. https://doi.org/10.1177/0333102410381145. https://www.ncbi.nlm.nih.gov/pubmed/20813784.

(3)   Friedman, B. W., West, J., Vinson, D. R., Minen, M. T., Restivo, A., & Gallagher, E. J. (2015). Current management of migraine in US emergency departments: An analysis of the National Hospital Ambulatory Medical Care Survey. Cephalalgia, 35(4), 301–309. https://doi.org/10.1177/0333102414539055. https://www.ncbi.nlm.nih.gov/pubmed/24948146. 

(4) Loder, E., Weizenbaum, E., Frishberg, B., Silberstein, S. and (2013), Choosing Wisely in Headache Medicine: The American Headache Society's List of Five Things Physicians and Patients Should Question. Headache: The Journal of Head and Face Pain, 53: 1651-1659. https://doi.org/10.1111/head.12233. https://www.ncbi.nlm.nih.gov/pubmed/24266337.

(5) Thorlund, K., Sun-Edelstein, C., Druyts, E., Kanters, S., Ebrahim, S., Bhambri, R., Ramos, E., Mills, E. J., Lanteri-Minet, M., & Tepper, S. (2016). Risk of medication overuse headache across classes of treatments for acute migraine. The journal of headache and pain, 17(1), 107. https://doi.org/10.1186/s10194-016-0696-8. https://www.ncbi.nlm.nih.gov/pubmed/27882516.

(6) Begasse de Dhaem, O., Burch, R., Rosen, N., Shubin Stein, K., Loder, E. and Shapiro, R.E. (2020), Workforce Gap Analysis in the Field of Headache Medicine in the United States. Headache: The Journal of Head and Face Pain, 60: 478-481. https://doi.org/10.1111/head.13752. https://www.ncbi.nlm.nih.gov/pubmed/31985046. 

(7) https://www.ucns.org/Online/Diplomate_Directory/Online/Diplomate_Directory.

(8) The Complexities of Physician Supply and Demand: Projections from 2017-2032, AAMC, April 2019. https://www.aamc.org/news-insights/press-releases/new-findings-confirm-predictions-physician-shortage.

Headache on the Hill 2019: The Asks

In my previous post, Headache on the Hill 2019: My Experience, I shared about my personal experience at the annual advocacy event. Below is what I wrote at the end of my time in DC. The majority of this post, however, will speak to our 'asks' for 2019.

"The last few days have been an amazing, exhausting, powerful experience. I joined a wonderful group of patients, advocates, headache specialists, and other supporters in Washington, DC for the 12th annual Headache on the Hill. We met with lawmakers to raise awareness, request increased research funding commensurate to the burden of headache disorders, and demand equal protection and just coverage under Social Security Disability Insurance. I was honored to participate - it was especially rewarding to be working alongside my headache specialist. I will continue advocating for all those affected by headache disorders, and look forward to future visits to the Hill."

This year, we asked our members of Congress to support increased research funding for headache disorders from the National Institutes of Health (NIH), and to support requests directing the Social Security Administration (SSA) to revise disease listings for determination of disability benefits for those disabled by migraine and other headache disorders.

Our 'ask' for the National Institutes of Health (NIH) was to prioritize research funding commensurate to the burden of headache disorders. Congress has already appropriated funds for the HEAL (Helping to End Addiction Long-term) Initiative to address the need for non-opioid therapies for chronic pain. Some of those funds have been set aside for research in specific areas (back pain and hemodialysis pain). Our request was that some of the appropriated funds be allocated specifically for headache disorders, in proportion to the disease burden.

• Migraine is the 2nd leading cause of all global disability (1).
• Headache disorders are the least funded NIH research area among the most burdensome US diseases (2).
• Migraine research comprises just 0.6% of all NINDS extramural funding (3).

Our 'ask' for the Security Administration (SSA) was to seek equal protection and just coverage under Social Security Disability Insurance (SSDI). When a person applies for SSDI benefits, they are faced with an unfairly arduous process. When that person is filing a claim for benefits due to a headache disorder, they are often initially denied. What I didn't know until Headache on the Hill is why...

The SSA uses a "Blue Book" listing of impairments, when making decisions for disability benefits. If one's impairments meet or exceed the listing, benefits are granted. However, there are NO listings for any headache disorder!

When a person applies for disability due to a headache disorder, the claim is compared to impairment listings for epilepsy. There is no guidance on how to apply an epilepsy listing to headache disorder impairments, and the two aren't sufficiently comparable.

This is unacceptable, given the prevalence and impact of headache disorders:

• 1 in 7 Americans will experience a migraine attack this year (4).
• Active migraine attacks disable with impacts comparable to severe dementia or amputation of both legs (5).
• Only 37% of Americans with chronic migraine are employed full time (6).
• Socioeconomic status decreases as migraine prevalence increases (7).

Our 'ask' was to reform the Social Security Administration (SSA) Blue Book for fair adjudication of headache disorder claims. We requested that the SSA offer clarification for how SSDI claimants with headache disorders should apply current Blue Book listings, ensure that all listings are updated at least every five years (it was last updated in 2016, but before that was 1985), and add a listing for headache disorders at the earliest opportunity.

UPDATE: On August 26th, the SSA released a new Ruling or SSR with guidance specific for "Evaluating Cases Involving Primary Headache Disorders."

More information about Headache on the Hill 2019:

• Alliance for Headache Advocacy HOH 2019
• American Migraine Foundation HOH 2019

Sources:
(1) GBD 2016. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990-2016: a systemic analysis for the Global Burden of Disease Study 2016. Lancet 2019;390:1211-59, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)32154-2/fulltext
(2) https://report.nih.gov/info_disease_burden.aspx 
(3) https://report.nih.gov/categorical_spending.aspx
(4) Global Burden of Disease study, 2016, https://www.ncbi.nlm.nih.gov/pubmed/28919117.
(5) Salomon JA, et al. Disability weights for the Global Burden of Disease 2013 study. Lancet Glob Health 2015;3:e712-23, https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(15)00069-8/fulltext.
(6) Stewart WF, et al. Employment and work impact of chronic migraine and episodic migraine. JOEM. 2010;52:8-14, https://www.ncbi.nlm.nih.gov/pubmed/20042889. 
(7) Stewart WF, et al. Migraine prevalence, socioeconomic status, and social causation. Neurology. 2013;81:948-55, https://www.ncbi.nlm.nih.gov/pubmed/23990405.

Headache on the Hill 2019: My Experience

In February, I joined a group of 160 advocates in Washington, DC at the 12th annual Headache on the Hill lobbying initiative. The event is organized by the Alliance for Headache Disorders Advocacy (AHDA). Healthcare professionals, advocates, and patients come together to request that lawmakers recognize the impact of headache disorders and take action to increase research funding and awareness.

This was my first time participating in Headache on the Hill. The first day was filled with advocacy issue training and Hill visit preparation. We learned more about what our 'asks' would be (I'll share more in a separate post, Headache on the Hill 2019: The Asks, if you're interested) and we practiced sharing our personal stories of living with headache disorders, so that we'd be prepared to approach and interact with our policymakers.

The following day, we all came together for a group photo and a policy meeting, and then we broke up into small groups to visit our respective congressional members' offices.

My group didn't have scheduled meetings until the afternoon, so we split up to rest until then. One of our group members was unable to attend meetings because he was dealing with a migraine attack. While I know that being unable to participate was in many ways just as excruciating, we carried his story with us and used it in our meetings as a powerful example of what living with migraine disease is really like.

One group member down, I spent the day partnered up with my headache specialist (Dr. Amaal Starling) to attend our scheduled meetings.

• Our first meeting was with a staff member, and we felt a lack of interest in what we were sharing.  
• Our second meeting ended up being part of a "roundtable" situation, which basically meant that there were multiple groups there during the same time-slot, but the Representative was there in person. He had some personal interest in headache / migraine, but was dismissive to me as someone living with migraine and focused his attention on my partner (as a healthcare provider). 
• Our third meeting revealed the misunderstanding and stigma of headache disorders, but was where we really leaned on the story of our missing group member, as it was his congressional district's office we were visiting.

Based on conversations with others that have attended Headache on the Hill before, my experience during the three meetings I attended were a bit different or rougher than "normal." It may have been a push into the deep end, but Dr. Starling and I worked well together in advocating for the headache community.

It was quite powerful to be surrounded by so many people with a passion for advocacy work. We were all on a single mission: to be the voice of all people living with headache disorders. We bravely shared our stories, to help others better understand what it's like to live with these diseases. I'm honored to have been able to participate, and I look forward to continuing to do so.

"There is no power for change greater than a community discovering what it cares about." 

- Margaret J. Wheatley

Upcoming Happenings

I wrote in Farewell, 2018! about having a word or phrase to guide and grow in during different times.

Along those lines, there are some exciting events coming up over the next few months. Here's a sneak peek, but I'll definitely share more.

Headache on the Hill (February 12)

Photo by Nerdy Rockson on Unsplash

Headache on the Hill is an annual lobbying event in Washington, DC, where healthcare professionals, advocates, and patients come together to request that lawmakers recognize the impact of headache disorders and take action to increase research funding and awareness.

Miles for Migraine Walk / Run (March 2)

Miles for Migraine is focused on improving the lives of those living with headache disorders, by increasing public awareness, fighting stigma, and raising funds for migraine research. 

Migraine World Summit (March 20-28)

Migraine World Summit is a virtual event that will provide talks from "over 30 of the world’s top migraine and headache experts, doctors, specialists, researchers, scientists, geneticists, psychologists, authors, and advocates." The event is FREE (4-5 talks will be released per day, and will be available for free for 24 hours). If you can't listen during those dates, the Summit will be available for purchase. Click here, to claim your ticket for the 2019 Migraine World Summit.

RetreatMigraine (April 12-14)

RetreatMigraine is a conference focused on people living with migraine disease. It will provide "support, community, disease and treatment education, advocacy training, and complementary therapy experiences."

Headache on the Hill

Miles for Migraine

Migraine World Summit

RetreatMigraine

   

Two More CGRP-Drugs Approved by FDA

May 17, 2018 was a Momentous Day for Migraine: First CGRP-Drug Approved by FDA. It was the first FDA approval in a new class of preventive medications developed specifically for migraine.

The month of September has seen the FDA approve two more CGRP-related medications.

On September 14, Teva announced the FDA approval of Ajovy (fremanezumab-vfrm), "a humanized monoclonal antibody that binds to calcitonin gene-related peptide (CGRP) ligand and blocks its binding to the receptor" (https://www.businesswire.com/news/home/20180914005613/en/). It's available in monthly or quarterly doses, via self-administered, subcutaneous injection(s) from pre-filled syringe(s). The list price is $575 per monthly dose and $1,725 per quarterly dose.

On September 27, Eli Lilly and Company announced the FDA approval of Emgality (galcanezumab-gnlm). It will be available as a once monthly, self-administered, subcutaneous injection. The first month will be two injections, followed by a single monthly injection.(https://www.multivu.com/players/English/8386051-lilly-emgality-fda-approval-migraine-treatment/)

The CGRP class of medications work to stop CGRP protein from binding to the receptor. Aimovig, is a monoclonal antibody against the CGRP receptor. Both Ajovy and Emgality are monoclonal antibodies against the CGRP protein. There is one more medication that targets the protein that has not yet been approved by the FDA.

Further reading:

• https://www.neurologylive.com/clinical-focus/galcanezumab-fda-go-ahead-migraine-prevention?utm_medium=email
• https://americanmigrainefoundation.org/understanding-migraine/new-anti-cgrp-migraine-treatment-options/
• https://americanheadachesociety.org/news/cgrp-blocking-antibodies-qa-with-dr-david-dodick/

Each of the companies that have come to market with CGRP medications for migraine prevention are offering patient support programs, specifically for those with commercial insurance.

Here are the links for the different medications that have been FDA approved:

• www.aimovig.com
• www.ajovy.com
• www.emgality.com

Momentous Day for Migraine: First CGRP-Drug Approved by FDA

Huge news! Today, the first-ever preventive developed specifically for migraine was approved by the FDA.

"The drug, Aimovig [erenumab-aooe], made by Amgen and Novartis, is a monthly injection with a device similar to an insulin pen. The list price will be $6,900 a year, and Amgen said the drug will be available to patients within a week." (https://www.nytimes.com/2018/05/17/health/migraines-prevention-drug-aimovig.html)

This new class of medications targets the calcitonin gene-related peptide (CGRP), which is believed to play a critical role in migraine. There are three other drugs in this class that are aimed at FDA approval in the coming months. During clinical trials, all of these meds have done remarkably well: more effective than the meds currently used for migraine prevention, and with fewer side effects. This could be life-changing!

Further reading:

• https://www.amgen.com/media/news-releases/2018/05/fda-approves-aimovig-erenumabaooe-a-novel-treatment-developed-specifically-for-migraine-prevention/
• http://www.businessinsider.com/fda-approves-amgen-novartis-preventive-migraine-medication-aimovig-2018-5
• https://americanmigrainefoundation.org/understanding-migraine/cgrp-drug-migraine-facebook-live-recap/

Migraine World Summit - Order

Get your own copy of the 2016 Migraine World Summit today!

The Migraine World Summit has ended, but it's not too late to have access to information from over 30 world leading migraine experts, doctors, and specialists. If you're interested in finding out more, you can go to The Migraine World Summit. 

Get your own copy of the 2016 Migraine World Summit today!

Migraine World Summit

CLICK HERE

The Migraine World Summit started today. I just listened to the first lecture / presentation, and I found it very informative. The presentations are available free for 24 hours from when they are posted online. There is an All Access Pass that you can purchase, so that you can watch / listen at your leisure (part of the proceeds go to migraine research). They have a website and Facebook page, and it runs daily from April 15-20, 2016 - the schedule is available on the website.

*** If you do order the All Access Pass, please use THIS LINK (or click on photo above) so I get credit for referring you!

Song of Hope

Song of Hope: What song gives you hope to hold, despite your Migraines or Headaches and how?

I love music. It can express things that it's otherwise difficult to express.

I've posted a lot about different songs that provide me comfort, inspiration, hope, etc. If you'd like to take a look and hear more, I actually have a blog post specifically for songs of hope: My Playlist: Songs of Hope.

One of the songs on that playlist is the one that I feel most compelled to share today: Stronger by Mandisa.

This song is such a strong reminder that God loves me unconditionally and will never forsake me. He knows the hurt I feel, and He will help me through even the most difficult of times.

'Cause if He started this work in your life / He will be faithful to complete it / If only you believe it / He knows how much it hurts / And I'm sure that He's gonna help you get through this

http://youtu.be/emgv-VRtMEU

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" (Jeremiah 29:11).

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

Symbol of Hope

Symbol of Hope: What symbol helps give you hope for living with Migraine and Headaches?

There are multiple symbols that help give me hope for living with Migraine and Headaches. But, there is one that stands far beyond all the others.

The cross.

The cross means and reminds me of so many things, including: that I am a cherished child of God, that God loves me so much that He sacrificed His only son (who was raised on the third day), that I have purpose in this life,  that I am never alone, that I have the God of angel armies fighting for me.

The cross points me back to God. My faith in Him is where I find strength, hope, gratitude, and peace.

"I can do all this through him who gives me strength" (Philippians 4:13)

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

Large Migraine Hopes

Large Migraine and Headache Hopes: What large thing gives you hope for living with Headaches and Migraines?

One of the large things that gives me hope for living with Migraine and Headache is advocacy. I get a surge of hope rush through me, as I see and read so many people's stories and advocacy efforts online.

It also gives me hope to be able to be one of the voices out there. This blog is a place that I can share my experience, advocate for myself and the Migraine community, and let others know that they're not alone. Even though there are times that I struggle to write, I try to share / spread hope in other ways. Being able to contribute, in even the smallest way, is huge to me.

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

Small Migraine Hopes

I've fallen a few days behind in the blog challenge, so hang on tight as I quickly get caught up.

Small Headache and Migraine Hopes: What small thing gives you hope for living with Headaches and Migraines?

I've been much more aware of the "little things" in life. Perhaps this is one of the "side effects" of life slowing down. Life is made up of little moments, and I now find that even the most mundane things have taken on different meaning.

It is in the simple, everyday things that I find hope. For example, I find hope in being able to help out around the house, in whatever capacity I'm able. Each day, I do at least one thing, no matter how big or small. 

My husband really helps me with this. He cheers me on, even when I don't feel I've contributed to the day in any way. Even when all I can do is get out of bed in the morning and barely hang on throughout the day, he is there to help me and he tells / reminds me that my worth is not based on what I can or cannot do.

It gives me hope, when I'm able to attend and participate in things outside the home: going for a walk with my husband (and our dog), going to the grocery store with my husband (rarely, alone), spending time with loved ones. When I'm able to manage the pain with coping skills and/or meds, and still be able to participate in life, it gives me hope.

I also believe that gratitude and hope are intertwined. The more grateful I am, the more hope I feel for the future. There's power in noticing and being grateful for even the smallest of things in life.

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

Favorite Hope Quote

I know that I have been absent from the blogging world for quite some time, but I'm still here. In the spirit of awareness, I'm going to be participating in the MHAM Blogging Challenge.

Favorite Hope Quote: What's your favorite quote about hope, and how does it apply to your Headaches or Migraines?

I LOVE quotes! Whether by a well-known author or someone I have a passing conversation with, I find words that resonate with my soul to be a huge blessing.

As I read the prompt, I immediately thought of a poem I've loved for as

long as I can remember: "Hope" is the Thing with Feathers by Emily Dickinson.

"Hope" is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all - 

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm - 

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

I think this poem beautifully depicts the hope that is ever-present in the heart. And, it is this ever-present hope that defeats despair, despite overwhelming circumstances.

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

Migraine and Headache Awareness Month

Yesterday was the first day of Migraine and Headache Awareness Month (MHAM).

The theme for 2015 is INSPIRING HOPE.

I love the theme for this year. I'm looking forward to both reading and writing about how hope plays a role in each of our lives.

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.