Episode 28. From Pain to Purpose: Shoshana's Journey to Migraine Meanderings
A Beacon of Hope for the Migraine Community
In a world where chronic pain can often feel like an isolating, invisible battle, Shoshana Lipson has emerged as a beacon of hope, compassion, and empowerment for the migraine community. Her life’s work is a powerful testament to the resilience of the human spirit, and her impact reaches far beyond advocacy. Through her organizations Hope for Migraine and Migraine Meanderings, Shoshana has created a platform where individuals grappling with migraine and other chronic conditions can find solace, validation, and strength.
In this episode of Migraine Heroes, we celebrate Shoshana’s incredible journey, the vital work she is doing, and the profound impact she’s had on so many. As someone who has lived with chronic migraine since childhood, Shoshana understands better than most what it feels like to live in the shadows of pain. Yet, she has taken that pain and turned it into power — not just for herself, but for thousands of others like her. Let’s dive into her story.
From Pain to Advocacy
Shoshana’s migraine journey spans over four decades. It began in her childhood, with migraine becoming a consistent part of her life, and as she grew older, the condition worsened. Despite pursuing many different treatments, Shoshana struggled to find relief, and the frequency of her migraine only increased. Today, she experiences 15+ migraine days each month.
This challenge — trying endless treatments without success — can feel disheartening, but Shoshana didn't let it stop her. Over time, she found strength in advocacy. Recognizing that many others were also suffering, she began to channel her energy into creating supportive spaces and resources for the migraine community. Her mission became clear: to encourage, support, and educate others living with chronic pain. Through her advocacy, she has helped thousands find solace and empowerment, knowing they are not alone in their fight.
Shoshana’s work goes beyond addressing migraine — she’s also driven to bring attention to chronic pain conditions as a whole. A unique position as both a patient and advocate allows for a deeper understanding of the complexities of living with pain while pushing for change, awareness, and better treatment options.
Founding Migraine Meanderings and Empowering Others
In 2018, Shoshana decided to take her advocacy work to a new level, driven by her own experiences and desire to support others living with migraine. This passion led her to found Migraine Meanderings, an online community designed for people with migraine to connect, share their experiences, and learn from one another. What started as a modest initiative has since grown into a thriving space, with over 30,000 active members across multiple social media platforms. Migraine Meanderings has become a vital resource for thousands of people navigating their migraine journey, offering not just connection but education and hope.
Building on the success of Migraine Meanderings, Shoshana also launched a unique tool for the migraine community — a Migraine Treatment Toolbox. Reflecting on this project, Shoshana shares,
“My greatest achievement so far would be creating what I call the Migraine Treatment Toolbox.”
This resource was created to provide individuals with comprehensive, up-to-date information about a range of medications, medical devices, and other treatment options, including the latest on new treatment options such as the new anti-CGRP therapies, which have been a breakthrough in migraine management.
The Treatment Toolbox doesn’t just list existing medications and medical devices; it covers everything from preclinical treatments to those in the final stages of phase three trials, giving people a clear roadmap of what could work for them and what is in the pipeline. In a field that can feel overwhelming and confusing, Shoshana has created a tangible resource that demystifies the process of finding effective treatment options. This practical guide has become an invaluable tool for those seeking relief, offering hope and clarity in the often challenging journey of managing migraine diseases.
Loved this artwork at #IHC2019 and the opportunity to spray paint your own words for #migraine. I added ‘monster’ and ‘hope’" – Shoshana Lipson
Beyond Advocacy. Elevating Voices and Breaking Stereotypes
While Shoshana Lipson’s advocacy work is well-known for its focus on treatment awareness, she also places significant emphasis on expanding the conversation around migraine disease. A major part of her mission is to challenge stereotypes, empower others, and amplify underrepresented voices within the migraine community.
One key issue Shoshana addresses is the misconception that migraine is a “women’s disease.” Although the majority of sufferers are indeed women, Shoshana stresses the importance of recognizing that around 25% of people with migraine are men — over 10 million men in the U.S. alone. She argues,
“I’m passionate about the fact that this is not just a women’s disease.”
Shoshana believes that men with migraine often face additional barriers to diagnosis and treatment, and are often less likely to seek medical help. She explains, “We know that approximately 75% of people with migraine are women, but that still means there are over 10 million people in the U.S. who are men who live with migraine. I wouldn’t call that a women’s disease. And then there's my own personal theory that men are less likely to go to the doctor, less likely to get diagnosed, less likely to be treated.”
Another focus of Shoshana's advocacy is supporting young adults with chronic migraine. She highlights the unique challenges faced by individuals aged 18 to 25, who often experience difficulties as they transition from pediatric care to managing their condition independently. Shoshana reflects on her own experience with her sons, noting, “My older two sons were diagnosed quickly and treated very quickly. I advocated for them throughout their childhood and adolescence, but once they left home, it all fell apart. Fortunately, my oldest son is doing much better than during adolescence, but my youngest son has recently also had multiple migraine attacks, and I’ve been watching his migraine journey with the healthcare system, and getting a birds-eye view!” She adds,
“If you're getting better, that's fine. If you're getting worse or not getting better, it's not fine. Because migraine can chronify, that means it can get worse. And one of the markers for it getting worse and chronifying is if it is not appropriately treated.”
Advice to Others. Knowledge is a Power
When asked what advice she would give those struggling with migraine, Shoshana emphasizes the power of knowledge and persistence in navigating this complex disease. She believes education is key for anyone managing migraine, stressing the importance of being proactive in learning about available treatments.
Shoshana also highlights the importance of self-advocacy when dealing with healthcare professionals. Many people living with migraine face difficulties in receiving the proper care, often encountering doctors who do not fully understand the disease or its complexities. She encourages others to take control of their health journey, even if it means seeking a second opinion or finding a new healthcare provider. Her organization also provides a fillable “ Migraine Action Plan ” which patients can download and fill out together with their doctor.
"If your doctor isn’t taking you seriously or isn’t knowledgeable enough about migraine, find someone who is. Be persistent because you deserve to be heard, and you deserve better treatment."
Her message is clear: persistence and empowerment are vital. The more you know about migraine and the available treatments, the better equipped you’ll be to advocate for yourself and demand the care you deserve.
Photo credit: Shoshana Lipson, via Facebook
"Here in a very windy Dublin, super excited to be at the CHAMP - Coalition For Headache And Migraine Patients meeting here and also to have the amazing privilege of attending the #IHC2019 congress! Middle of a migraine right now and waiting for my meds to kick in - not feeling real happy with my brain at the moment! But refusing to give up on life like all of you. There is #hope for all of us still. Seeing everyone here reminds me of that!" – Shoshana Lipson
Building Community: Finding Strength in Connection
One of the most impactful aspects of Shoshana’s advocacy is the strong, supportive community she has cultivated through Migraine Meanderings and her other platforms. Living with chronic migraine can be an isolating experience, but Shoshana has worked tirelessly to create spaces where individuals can connect with others who truly understand the challenges they face.
"It’s hard to describe what it's like living with chronic pain and migraine unless you've been through it yourself. But finding other people who ‘get it’ is incredibly empowering. You realize you're not alone in this journey, and that is a source of strength."
Shoshana’s community offers more than just a place to share stories — it provides emotional support, camaraderie, and hope. For many people, this connection to others who share their experiences can be as healing as any treatment.
"When you find a community, you realize that you’re not isolated in your pain. And that’s a really powerful thing."
Her work underscores the importance of support— not only through medical treatment but also through the shared experiences and empathy that come from being part of a community that truly understands.
A Family Affected by Migraine
For Shoshana, the fight against migraine is deeply personal. It’s not just a professional advocacy effort — it’s something that has impacted her own family on a profound level. Living with migraine herself, Shoshana has seen firsthand how this debilitating disease can affect multiple generations.
"Migraine is rampant in my family — my sister, one brother, three sons, and myself all live with this disease, which is highly impacted by genes,"
she shares in one of her Instagram posts. This personal connection fuels her passion for creating awareness, fighting the stigma, and advocating for increased funding in migraine research. Shoshana believes that despite affecting over 1 billion people worldwide, the stigma surrounding migraine remains a huge barrier to better care and understanding.
Shoshana’s story is one of resilience, determination, and hope. Through her advocacy, she has empowered thousands of individuals to take control of their migraine journey, offering them the resources, community, and encouragement they need.
As we wrap up this episode, we encourage you to explore the resources Shoshana has created and become a part of the incredible community she’s built.
Tune in to hear Shoshana’s full story on Migraine Heroes!
🔗 Connect with Shoshana on Instagram
🔗 Join the Migraine Meanderings community: Migraine Meanderings
Thank you, Shoshana, for your unwavering commitment and the profound impact you’ve made. Your work is a testament to the power of advocacy and the strength of the human spirit.
Migraine Heroes podcast stands as a testament to the strength of the human spirit and the transformative power of holistic approach, understanding, and support.
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