Retreat Migraine: Coalition for Headache and Migraine Patients CHAMP
Retreat Migraine: Coalition for Headache and Migraine Patients CHAMP has provided both in-person and virtual connections for me over the years. Each year, this weekend provides me with comforts and experiences that last forever.
Coalition for Headache and Migraine Patients CHAMP
The Coalition for Headache and Migraine Patients, CHAMP for short, brings together the most influential patient advocacy groups, organizations, and leaders of the migraine, cluster, and headache disease community. Their goal is to fight stigma and help promote fair access to treatments while enhancing communication, coordination, and collaboration among the groups.
The reason I like the Coalition for Headache and Migraine Patients is that it brings together many of the organizations I support and love. Some of these organizations include the Miles for Migraine, Migraine World Summit, Association of Migraine Disorders, Chronic Migraine Awareness Inc., Danielle Byron Henry Migraine Foundation, Migraine Again, Headache and Migraine Policy Forum (HMPF)U.S. Pain. It’s a great group trying to take their collaborative efforts and make them even bigger with teamwork.
What is Retreat Migraine?
Retreat Migraine is a conference specially designed by and for adults living with migraine disease. The multi-day event brings together patients, care partners and migraine experts to support and strengthen our community. In 2023 Retreat Migraine will be a hybrid event. In-person capacity is for 250 attendees and virtual capacity is 250. The conference offers interactive sessions that provide disease and treatment education, advocacy training and complementary therapy experiences.
If you can not afford Retreat Migraine, Champ offers ways to raise money or apply for a scholarship.
What if I get a Migraine Attack?
The whole weekend is created to be migraine friendly. No pressure, lots of accommodations, and easy access to my room for a quick escape. In my first year at Retreat Migraine, I got back to my room, and I was not making it back out. I was able to watch live, from my room, which allowed me to still be a part of the event and catch what I could the next day. Unfortunately, I missed a lot that weekend. Sometimes my migraine attacks last for days and this was one of them.
While I missed so much, I gained significantly. A significant moment for me was when I was sitting alone at breakfast. I knew people in the restaurant but chose to sit alone because the swirl of people was too much for me, I was too nauseous to talk, and I didn’t want to ruin others’ time. As I sat staring at my coffee, having a migraine moment, I had a friend tap me on the shoulder and ask if I was OK.
I had no strength left to hold back my tears. As another friend came over, I sat and cried in their arms. I was so mad that migraine was taking this away from me and even madder knowing that tomorrow most likely held the same fate. When I looked into her eyes, she said, “It’s not F@#$ing fair!” with hate in her eyes from someone who lives it. I have never felt so understood in my hatred for migraine, what it does to me, and the unity of wanting to do something about it. Make it change. Make it get better.
Who can Help?
As someone who has small children and teaches preschoolers, I don’t usually hear the F word, but I believe it has a purpose. What greater purpose than to say F@#$ migraine! I have so many people in my life that hate migraine for me but looking into her eyes and knowing the depths that it has affected her life, I felt a sense of not pity but rage inside her. Seeing and hugging someone who feels my internal anger for this awful disease and wanting to do something about it was powerful. The power that brings tears to my eyes as I’m writing this.
Just being around people who get it is very normalizing. I never felt like migraine made me different these were my people! We feel differently, our stories are different, and our purpose for being there may not have been the same, but I think we can all say, “F@#$ migraine!” from the depths of our souls.
On top of the kind stranger and familiar migraine buddy I had sitting next to me, Champ made it possible to have someone there to help at all moments. There were people there to greet me, welcome me at tables, and show me where to go. In our rooms, we had information on people who could help and a committee of people there to help. The great news is that there were lots of therapies that could potentially help there to try.
Where is Retreat Migraine?
Retreat Migraine 2023 Minneapolis, MN May 5-7
Retreat Migraine 2019
[April 2019] I went to the first-ever Retreat Migraine hosted by Coalition for Headache and Migraine Patients CHAMP in San Antonio, Texas in April. The second I saw it advertised was the second I started looking forward to it. Traveling to Retreat Migraine was exciting and worrisome at the same time. I don’t ever travel without my family and support. At the same time, I looked forward to meeting and seeing faces that I connected with online or new in person. I had never been around a group of people “like me.”
Being immersed in knowledge, having a chance to try products or devices, and getting information from all the organizations were something I looked forward to. I was interested to see how I would feel, what I would learn, and eager to feel a connection with people who understood. So I packed my migraine bag and was off. I boarded the airplane at a pain level of 6, and the pain only worsened throughout the weekend.
Arriving in true My Migraine Life fashion, I was triggered and under migraine attack. I was greeted by CHAMP staff and taken by van to our hotel. The van of eager guests was very considerate knowing I was sensitive to noise, light, and chaos around me. They all made me feel like I wasn’t the only one struggling to make it to this great event. I walked around the beautiful hotel in a pain-filled, medicated state while spending most of my time in my room. Mostly, I left to eat or warm myself in the sun while keeping my head in the shade. I watched from Facebook Live what I could and attempted to be part of the group while mainly focusing on calming my migraine symptoms.
Retreat Migraine Virtual
For the next couple of years, I stayed home and participated in Retreat Migraine virtually. There was this thing called Covid that stopped us from traveling and gathering so I took advantage of connecting at home. I loved that I still could register for a swag bag and enjoy all the goodies from the comfort of my own home. While the whole world was being isolated, I felt together with my community.
Should I go to Retreat Migraine?
So the question begs to be asked, “Was it worth it?” and the answer is a resounding “Yes!”
The reality is that I was in the ER the weekend before the retreat and throwing up in an airport the weekend before returning from a family trip. As a person with a chronic illness, I’m always sick. It doesn’t matter where I am. Retreat Migraine is made to plan around migraine attacks and be as triggerless as possible. The benefits far outweigh the triggers. Believe me, when I say, the experience far outlasts missing it fully.
With that said, I have experienced the benefits of both in-person and virtual participation. I encourage you to do either! Going in person is a priceless gift of real-life connection. Post Covid, we all understand the value of face-to-face interactions and I would recommend it to everyone. At the same time, the convenience of being at home was also very valuable. I was unable to travel, put my health at risk, or gather and that may never change. Everyone’s health is at a different stage and I appreciate the flexibility each year holds.
Retreat Migraine Community
I can’t say thank you enough for the fantastic people who brought us all together. Most people who work for these unique groups are sick, at some point, before, during, or after, these events. It is a group comprised of volunteers and some of the hardest workers I know. You are the definition of strength and inspiration!
Retreat Migraine Sponsors
Also, thank you to our sponsors. The products and companies that support this event are what made it possible. Migraine has been ignored since the beginning of time, and I’m so glad people are finally investing money into research and the people behind it.
Should I go to Retreat Migraine?
Unfortunately, I left Retreat Migraine on the earliest shuttle and missed the last day. I went to the airport to have a computer glitch and many lines waiting for my first flight. My second flight was canceled and rescheduled twice and was much delayed. I ate soup on the floor, waiting in line with intense pain, congestion, dizziness, and nausea. The following day, I was the first appointment to hear that I had been diagnosed with a double ear infection, upper respiratory disease, and fever.
Would I do it again?
YES, YES, YES, YES. This is My Migraine Life. Those people are migraine lifers. Whether you have had one migraine attack or live with them daily, you are part of our group. You know what it feels like to have your brain and body attack you. It’s not OK. I write this blog and continue to work for the migraine groups of CHAMP because we all deserve better. I find such value in meeting you all and look forward to continuing my advocacy efforts in a fight for us all.It was a highlight of my 2019
Allay Lamp- Green Light Therapy
Headache Hat- Ice Hat
Bed of Nails
Sarah tells stories of My Migraine Life. Living life through Migraine consists of advocacy, treatment, prevention, and searching for health and happiness in a positive honest way. Her kids, husband, dog, family and friends motivate her to make a difference in the Migraine World.