Episode 36. What Is Hemiplegic Migraine & How to Find a Hope?
On this episode of the Migraine Heroes podcast, we’re honored to share the inspiring journey of Cheryl Warren, a devoted advocate for the hemiplegic migraine community. Cheryl’s story is one of resilience, courage, and the power of human connection. Through her advocacy work, Cheryl has become a beacon of hope for countless individuals navigating life with hemiplegic migraine — a condition often misunderstood, yet profoundly impactful.
Cheryl’s advocacy is deeply personal — her journey began with her own battles with hemiplegic migraine. Experiencing debilitating episodes that mimicked strokes, she faced years of misdiagnoses and confusion before finding clarity. This personal struggle fueled her passion for creating supportive spaces for others facing similar challenges.
In this episode, Cheryl talks about the origins of her advocacy, her personal experiences, and how small steps can lead to big change. Here’s a closer look at her story.
Cheryl’s Journey into Advocacy
Cheryl’s path to advocacy began with the encouragement of her daughter’s case manager. During the podcast, Cheryl recalled, “She suggested I start a Facebook group for moms. I wasn’t sure about it, but her encouragement was all it took to get me started.” That first group became a supportive space for mothers to connect and share experiences, but it also sparked something deeper in Cheryl — a desire to make a broader impact.
Motivated by the success of her first group, Cheryl decided to create a separate Facebook community specifically for individuals living with hemiplegic migraine. “I realized how important it was for people to have a space where they could feel understood,” she shared.
“The group became a place where we could talk about things that others might not understand.”
The group quickly grew into a lifeline for many, offering both emotional support and practical advice. Members found comfort in sharing their stories and discovering that they weren’t alone in their struggles. Cheryl’s natural empathy and dedication to fostering a positive, inclusive environment helped transform the group into a vibrant community.
Reflecting on her journey, Cheryl said, “That one small push to start something turned into so much more than I could have imagined. It taught me that sometimes, all it takes is a single step to make a big difference.” Her advocacy began with a simple idea but has since impacted countless lives.
Understanding Hemiplegic Migraine
Hemiplegic migraine is a rare and complex type of migraine and one of the most challenging to manage. During the podcast, Cheryl explained how this condition mimics the symptoms of a stroke, causing temporary paralysis or weakness on one side of the body. These episodes are often accompanied by intense pain, visual disturbances, and other debilitating symptoms, making daily life unpredictable and difficult. Cheryl shared how her own hemiplegic migraine episodes often left her partially paralyzed, and unable to move or speak. 'The first time it happened,' she recalled, “I truly thought I was having a stroke. It was terrifying.” These experiences were not only physically debilitating but also emotionally draining, as she often struggled to explain her condition to those around her.
“It’s not just the physical symptoms — it’s the emotional toll of feeling like no one understands what you’re going through.”
One of the most alarming aspects of hemiplegic migraine is the widespread lack of awareness, even within the medical community. Misdiagnosis is common, leading to unnecessary treatments or delays in proper care. Cheryl highlighted the importance of education and advocacy in reducing this confusion. “When someone experiences a hemiplegic migraine for the first time, they’re often terrified,” she said.
“It looks and feels like a stroke, and that’s incredibly overwhelming. But sharing knowledge can make a huge difference in how people cope.”
Through her advocacy, Cheryl has played a vital role in bringing hemiplegic migraine out of the shadows. Her support group offers a safe space for individuals to connect, share their experiences, and find reassurance from others who truly understand. The group also provides practical advice, from managing symptoms to navigating the complexities of healthcare systems.
“By sharing our stories and knowledge, we’re helping each other feel less alone,” Cheryl explained. “It’s not just about managing the condition — it’s about building hope.” Her work has illuminated the unique struggles faced by those living with hemiplegic migraine while creating a community where compassion and understanding thrive.
The Power of Community Support
A key theme in the episode was Cheryl’s deep belief in the strength of collective support. She emphasized how building meaningful connections, particularly among women, can empower individuals to overcome even the toughest challenges. Reflecting on her own journey, Cheryl described how finding a community transformed her approach to living with migraine. “Before I connected with others who understood, I felt completely alone,” she said. “Knowing I wasn’t the only one experiencing these challenges gave me the strength to keep going and advocate for others.”
“If you’ve got a good group of women behind you, you’ll go much further. We rise by helping each other.”
For Cheryl, this sense of unity has been a foundation of her advocacy and an essential source of strength for the communities she supports.
Her online support groups have become a lifeline for individuals with hemiplegic migraine, offering advice, empathy, and a sense of belonging. Cheryl explained how these spaces create a safe environment where people can openly share their experiences and find comfort in knowing they are not alone.
“Sometimes, just knowing you’re not alone can make all the difference.”
This sentiment is echoed in the feedback shared by members of her Facebook group. In a recent Instagram post, Cheryl highlighted a message from a new member of the group who expressed their frustration with the lack of medical knowledge about hemiplegic migraine. Cheryl’s response showcased her mission to educate and advocate:
“We are trying to change this by our efforts in educating and advocating about hemiplegic migraine through our support group and nonprofit! I’m so glad we could reach out to this new member in our group, especially during a difficult time.”
The story reflects the core of Cheryl’s work — offering not only resources but also a community where people feel seen, supported, and empowered to navigate the challenges of migraine together.
Chronic Illness and Advocacy
Cheryl Warren knows firsthand the challenges of living with chronic illness, particularly the frustration of feeling unheard. “Chronic illness is hard,” she shared, acknowledging the emotional and physical toll it takes on individuals. For many, including Cheryl, the journey isn't just about managing symptoms but also about facing the isolation that comes when others don't fully understand.
Despite these challenges, Cheryl has worked tirelessly to create spaces where people with chronic illnesses, especially migraine, can speak openly and advocate for themselves. By fostering these conversations, she empowers others to share their experiences and stand up for the care they deserve. “It's a journey, but we can help one another along the way,” she emphasized, showing that mutual support is key to finding strength and moving forward.
Through her advocacy, Cheryl has built a community that encourages people to speak out and find solidarity in their struggles. Her work highlights that by supporting one another, individuals can reclaim their power and make their voices heard in a world that often overlooks them.
Starting Small, Dreaming Big
Cheryl’s journey to success began with small, manageable steps. She recalls, “When I started, my first trackers were just paper,” but those simple tools helped her — and countless others — understand their migraine triggers and patterns. What began as a basic method evolved into a powerful way to track and manage chronic illness, showing that even small actions can have a big impact.
Cheryl encourages others to embrace uncertainty and take action, no matter how small the steps may seem. “You’ll never know unless you try,” she says, urging people to begin their journey toward better health, no matter the challenges. She believes that passion is the driving force that turns even the smallest efforts into meaningful progress. “Just start, and let your passion guide you,” she advises, reminding us that every step counts toward the bigger picture.
A Shared Vision for the Future
Cheryl’s vision for the migraine community extends far beyond her personal advocacy efforts. She believes that meaningful change is most achievable through collaboration and shared purpose.
“We’re going to Mars — why can’t we solve migraine?”
Cheryl remarked during the episode, blending humor with a resolute determination to inspire action. Her statement captures her unwavering optimism and the need for bold thinking to address the complex challenges faced by those living with this condition.
For Cheryl, partnerships must be grounded in authenticity and shared values. She stressed the importance of aligning with others who are genuinely committed to making a difference. “If we’re in this together, I want to know we’re doing it for the right reasons,” she explained. Cheryl highlighted that the work should always prioritize the needs of the community over profit, focusing on creating tangible, positive impacts for those affected by migraine.
This belief fuels her dedication to fostering innovative solutions and building a united front against the condition’s challenges. Cheryl’s call for collaboration isn’t just a vision — it’s a rallying cry for anyone who shares her commitment to transforming the lives of people with migraine through empathy, persistence, and collective effort.
Key Takeaways from Cheryl’s Story
During the episode, Cheryl offered invaluable advice and insights for listeners:
Start Small: Don’t let fear hold you back. Begin with what you have and build from there.
Build Community: Surround yourself with supportive individuals who uplift and inspire you.
Advocate for Yourself: Speak up about your needs and experiences to create change.
Stay Resilient: Life with chronic illness is challenging, but persistence and connection can make the journey easier.
A heartfelt thank you to Cheryl Warren for sharing her insights, passion, and dedication to the migraine community. Your work inspires us to keep pushing for progress and creating spaces where every voice is heard. We’re so grateful for your continued advocacy and the difference you make every day.
Tune in to hear Cheryl’s full story on Migraine Heroes! Her story will leave you inspired, empowered, and ready to take your own steps toward change.
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