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  • Living with Visual Snow Syndrome

    Living with Visual Snow Syndrome
    2025/04/23
    Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision, no matter if her eyes are open or closed. This constantly moving static is black and white, similar to that of an old TV. The static itself is only one symptom out of many that Willemijn experiences, including blurred motion, after images and tinnitus, a constant ringing in the ears. She also experiences burning or cold prickling sensations in her body, and a sense of depersonalization. Overall, this is an overwhelming and debilitating constellation of overstimulating sensory experiences that has drastically changed her life. Willemijn's journey with VSS started about a year ago, but this was not her first unexplained health crisis. Several years before she had woken up with her legs no longer working, precipitating the need for a wheelchair for the next 6 months. Doctors never figured out why this happened, partially because the problem was worked through in physical therapy while Willemijn waited a year to see a specialist. Her visual snow started when she was about 20 weeks pregnant, and when her son was born she experienced a thyroid issue that eventually turned into Hashimoto's disease. Dealing with her day to day symptoms has been frustrating enough, but the lack of answers or support from medical professionals has been deeply discouraging. In this episode of the Major Pain podcast, Willemijn tells us what it's like to live with visual snow syndrome, and talks us through her medical journey so far. The onset of VSS has felt like she's in some kind of glitch where she doesn't feel like herself anymore, which has understandably led to anxiety and depression. Still, Willemijn has hope that researchers will uncover clues about how to treat this mysterious disease in the future. In the meantime, she has learned a great deal by connecting online with others going through similar things. She hopes that by sharing her story she can shed a light on VSS, spreading awareness about the disease itself, and the importance of continued research. Learn more about VSS at the Visual Snow Initiative's website: https://www.visualsnowinitiative.org/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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    48 分
  • Season 5 Premiere! Catching Up With Previous Guests Joey, Colby and Angela

    Season 5 Premiere! Catching Up With Previous Guests Joey, Colby and Angela
    2025/04/09
    Today we are kicking off the fifth season of Major Pain! Jesse reflects on the past year before we jump into three interviews with previous guests, updating us on their health journeys. Joey tells us about a surgery to manage his hidradenitis suppurativa, plus updates on his amazing advocacy work. Check out Joey's original episode here: https://majorpainpodcast.com/living-with-hidradenitis-suppurativa/Sign up for the upcoming HS Brotherhood meet up: https://zoom.us/meeting/register/d1fgOjAoTGOmmJDu9J9J8g#/registration Colby updates us on a new diagnosis, and discusses how past trauma has influenced their decision to undergo elective surgery. Find Colby's original episode here: https://majorpainpodcast.com/managing-somatic-symptom-disorder-inside-a-multitude-of-chronic-illnesses/ Angela tells us how breathing problems led to her diagnosis with pulmonary hypertension.Find Angela's original episode here: https://majorpainpodcast.com/surviving-multiple-chronic-illnesses-surgeries-a-coma-and-being-pronounced-dead-angela-b-brown-feels-blessed-to-be-alive/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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    1 時間 40 分
  • Sarah Fox on the Intersection of Mental Health and Faith

    Sarah Fox on the Intersection of Mental Health and Faith
    2025/03/26
    Since being diagnosed with bipolar 1 disorder, Sarah Fox has made it her mission to break down the stigma surrounding mental health. She is the host of the Rough Edges podcast, which provides tools for mental health education and examines the intersection between faith and mental health. Sarah's faith journey has been an integral part of her bipolar journey, in fact her diagnosis initially triggered a crisis of faith that she has since overcome. In January of 2021, Sarah experienced a severe manic episode. This involved disruptions in her sleep, incoherent thoughts and psychosis, with both auditory and visual hallucinations. Her memories of this time are hazy, but she does remember feeling a powerful sense of euphoria, like she was on top of the world. As this manic episode increased in intensity Sarah became aggressive, at which point her family decided to have her hospitalized. During her three week stay in the hospital Sarah was diagnosed with bipolar disorder, and the severity of her manic episode qualified her as type 1. In this episode of the Major Pain podcast, Sarah discusses how her bipolar diagnosis transformed her life, initially turning her world upside down. Her prior knowledge of bipolar had a negative connotation due to poor representation in popular media, and to be diagnosed with this disease triggered not only a crisis of faith but also an identity crisis. She suddenly had to re-contextualize everything she thought about herself, but the resulting transformation has brought her to a place of stability in both her bipolar journey and her faith. Through her mental health advocacy work she endeavors to spread a message of hope, proving it is possible to thrive with bipolar. Connect with Sarah and check out the Rough Edges podcast at https://www.roughedgespodcast.com/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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    1 時間 3 分
  • From Rebellious to Transformative: Alex’s Journey with Type 1 Diabetes

    From Rebellious to Transformative: Alex’s Journey with Type 1 Diabetes
    2025/03/12
    Alex Burket believes that his bout with bacterial meningitis in middle school may have saved his life, because it led to the discovery of his type 1 diabetes. Although meningitis resolved in about a month, diabetes would become a constant companion. 17 years later, Alex has learned a tremendous amount about living with this disease, in a journey that has gone from rebellious to transformative. Alex is the host of the Rise to the Challenge podcast, where he speaks with athletes, CEOs, entrepreneurs, recovering addicts and more, sharing stories of overcoming obstacles. Facing challenges is Alex's passion, he enjoys pushing himself out of his comfort zone to see what he can achieve. Doing so while balancing type 1 diabetes requires a level of discipline that Alex worked hard to cultivate. In this episode of the Major Pain podcast, Alex discusses his history with type 1 diabetes. We discuss what it was like to be diagnosed at such a young age, including the feeling of isolation this brought about. He talks us through his rebellious phase, where he pushed his body to the limit and fought against his diagnosis. He also discusses his transformation in the last 6 or 7 years, where a renewed focus on nutrition and fitness changed his body and mind for the better, developing the discipline to live harmoniously with his disease. Connect with Alex online: https://linktr.ee/alexburket PlayWatch on YouTube, or listen on your favorite podcast platform.
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    47 分
  • How Chronic Pain Led Pallavi to Holistic Wellness

    How Chronic Pain Led Pallavi to Holistic Wellness
    2025/02/26
    Pallavi's journey through chronic pain began with physical agony, but led to spiritual transformation. She grew up in India with a deep love of dance that had turned into a passionate career in her early 20s. On a fateful day about 6 months after her marriage in 2011, she fell from her bike while racing her cousins and went sliding down the road. This accident ended her dance career, leaving her in extreme pain that did not improve with time, baffling her doctors. Pallavi's situation expanded far beyond chronic pain - it became mysteriously difficult for her to use the right side of her body. She struggled to sleep, get out of bed and feed herself. Doctors had no idea how to help her, prescribing a large cocktail of medications out of desperation. Pallavi's turning point came when she overheard a doctor saying that she wasn't actually in pain, and just wanted attention. This made her extremely angry, and she vowed to find a way to overcome this mysterious affliction. Pallavi began to learn everything she could about energy healing and holistic wellness. She soon realized that the more she meditated, the less pain she was in. After around 3.5 months of meditation, she was pain free. On this episode of the Major Pain podcast, Pallavi shares how her harrowing journey with chronic pain has fueled her new purpose in life: to lead people with chronic pain and chronic illness through holistic wellness practices. She tells us about getting diagnosed with fibromyalgia several years after her accident, finally having a name to put to her mysterious pain. She also discusses the deep spiritual journey that resulted from this experience, learning to listen to ancient wisdom that helped transform her life. She now provides a healing space as a meditation, yoga and energy healing practitioner. Learn more about Pallavi's wellness program at https://www.highlivingwellness.com/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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    1 時間 15 分
  • Premature Birth at 24 Weeks: Preeti Discusses The Lifelong Impact

    Premature Birth at 24 Weeks: Preeti Discusses The Lifelong Impact
    2025/02/12
    The normal gestation period for birth is 40 weeks, and anything under 37 weeks is considered premature or preterm birth. Preeti experienced a premature birth at 24 weeks in 1989, weighing only 2 pounds, an astonishingly early birth that she feels incredibly lucky to have survived. Premature birth can impact health in a variety of ways over the course of someone's life, including neurodevelopmental challenges, cardiovascular disease, congestive heart failure, high blood pressure, chronic kidney disease and more. These impacts can present throughout the course of someone's lifespan, often unpredictably. In this episode of the Major Pain podcast, Preeti discusses not only her personal history with preterm birth, but also the wide-ranging spectrum of how premature birth can impact someone's life. She also shares the incredible steps that were taken to keep her alive at birth in 1989. So far, the majority of Preeti's challenges have been neurodevelopmental. She lives with ADHD and anxiety, as well as mild issues with executive functioning, visual-spatial learning and focusing. Luckily she has not experienced any issues with her organs so far, but remains constantly aware that there is potential for these issues to develop at any point in her life. As an adult she has made it her mission to educate other people about premature birth, to help both patients and their parents learn about how their lives may be impacted. Preeti has assembled a collection of research papers for anyone interested in learning more about premature birth. You can find them here: https://drive.google.com/drive/folders/1HfLIOUepjME6GX7UJHlH3PxUt_9gHux_?usp=sharing She also recommends the following resources: https://www.frontiersin.org/articles/10.3389/fped.2023.1213243/full#B16 https://adultpreemies.com/resources/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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    55 分
  • Every Time This Baker Eats, She Risks Intense Abdominal Pain

    Every Time This Baker Eats, She Risks Intense Abdominal Pain
    2025/01/29
    Danni Hertel (aka foodie_with_da_booty) has turned her passion for baking into a full time career. She is known for putting a fresh spin on classic treats. Her recipes have been featured in the Houston Chronicle, she has worked with dozens of celebrities and she has even won Best Holiday Cookie for the Houston area in 2021. While she enjoys bringing tasty treats to the masses, behind the scenes not everything is so sweet. For almost 5 years she has been dealing with intense abdominal pain, which is set off almost every time she eats. Danni has been through every test her doctors can think of, but her pain remains a mystery. She experiences early satiety (getting full quickly when eating), bloating, nausea and sharp shooting pains that often leave her curled up in agony. This condition seems to be flared not only by eating, but by external stress and anxiety. Doctors often don't take her complaints seriously, blame it on anxiety, or even on the fact that she is a woman. She says, "A young woman walking into a hospital or ER complaining of stomach pains, the first thing they always think of, oh, it’s your cycle, you’re pregnant ... and so I’ve been tested for pregnancy a million times because that’s what they think it is." In this episode of the Major Pain podcast, Danni describes her quest to diagnose her medical mystery. She shares the mental toll her journey has taken, including the development of an avoidant eating disorder. Since she experiences pain so often after eating, she struggles to eat at all. She tells us about the tests she has undergone, the potential diagnoses her doctors have discussed and the immense impact her symptoms have had on her life. Even though this situation has been extremely difficult, it has also prompted intense personal growth. She shares the things she's learned, the ways she's changed and how this challenge has helped her become a better person. After hearing Danni's story, please reach out to majorpainpodcast@gmail.com if you have any ideas of what might be causing her symptoms. Connect with Danni on her website: https://www.foodiewithdabooty.com/ PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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    1 時間 8 分
  • Tayler’s EDS was Screaming for Attention, But Doctors Ignored It

    Tayler’s EDS was Screaming for Attention, But Doctors Ignored It
    2025/01/15
    Looking back through the history of her medical challenges, it becomes painfully obvious that Tayler was born with the connective tissue disease EDS (Ehlers-Danlos Syndrome). Unfortunately, the lack of quality healthcare in her youth prevented this diagnosis for many years. She struggled physically throughout childhood, often being accused of laziness or being unwilling to participate, when in fact physical activity was more difficult, painful and dangerous for her than for her peers. Medical challenges often made her stand out, like her time spent in a back brace for scoliosis or her runaway heart rate in health class that led to a POTS diagnosis (postural orthostatic tachycardia syndrome) at 15 years old. Her EDS was constantly manifesting, screaming to be acknowledged, but doctor after doctor refused to take Tayler's complaints seriously. In this episode of the Major Pain podcast Tayler shares her remarkable health journey with us, eventually coalescing around her EDS diagnosis. The tumultuous road she has traveled includes many unexpected diagnostic detours, like septic arthritis, congenital muscular torticollis, visceroptosis, MALS and more, all conditions she teaches us about during this conversation. In the past year her GI issues have necessitated transitioning to an ostomy bag, and the ileostomy surgery led to unexpected complications that she will also share. Tayler found a creative outlet in crafting custom ostomy bags (found on her Etsy store). Since her ostomy bag gave her a second chance at living more fully, she likes to craft these bags out of second-hand materials found at thrift stores. Her experiences have given her a passion for helping others, working as a sign language interpreter and disability advocate. Check out Tayler's amazing projects or connect with her online: https://linktr.ee/distaaybled PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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    1 時間 13 分