Major Pain

Tiffany had her first seizure at 16 years old. She had gone to bed after studying for a history test, and woke up the next day on a gurney bound for the hospital. This first seizure caught her completely by surprise, and for years seemed to be some sort of fluke occurrence. At 22 years old she passed out during a grand mal seizure at the wheel of her car, waking up to find herself crashed into a tree. She felt lucky to be alive, but dismayed to be diagnosed with epilepsy. From that point forward she has experienced seizures constantly, as if a switch was flipped and seizure mode was permanently activated. Over the past 14 years since her epilepsy diagnosis, she has learned a great deal about acceptance and sacrifice in the pursuit of her best life.

In this episode of the Major Pain podcast, Tiffany shares her epilepsy story along with valuable insights and practical tips about her disease. She spent painful years experimenting with different medications to control her seizures, learning that she actually has refractory epilepsy. This form of the disease is characterized by difficulty controlling seizures through medication. Although her current medication helps to prevent grand mal seizures, she experiences complex partial seizures daily. She tells us about having an SEEG test (stereoelectroencephalography) in which electrodes were placed inside her brain to determine the location of her seizures. She had hoped to discover that the location would be operable, but learned that the risks would be too great. Since surgery is not an option and medication only brings partial relief, Tiffany has adapted her life to accommodate her constant seizures. She shares valuable tips and tricks for thriving with her disease, as well as guidelines to follow should you encounter someone experiencing a seizure. She also tells us about her work on behalf of the epilepsy community, as a blogger, advocate, and the founder of the The Epilepsy Network (TEN).

Growing up in the UK, Emma received care and services that helped her adapt to life with cerebral palsy. For some patients this disease affects cognition and neurology, but Emma was born with a less severe form causing mostly physical impairment. She was a bit clumsy and fell more often than her peers, but was able to live a mostly normal childhood. At 18 she was discharged from support services, as it was believed she had been given all the tools needed to thrive. Since this disease is not considered to be degenerative, it came as a shock when Emma started to experience a decline in her mobility during her 30s. It was an even greater shock to realize that support for adults with worsening CP symptoms was almost nonexistent.

In this episode of the Major Pain podcast, Emma discusses the disconnect between the medical view of cerebral palsy and the actual experience of living with it. Cerebral palsy is caused by damage to the brain around the time of birth. Since this damage does not get worse over time, CP is not classified as a degenerative disease. However, living in an adult body developmentally affected by cerebral palsy brings with it wear and tear that can be progressive and debilitating. Seeing a huge gap in this awareness, Emma turned to activism. She now works full time with the Adult Cerebral Palsy Hub, advocating for the needs of adults with her condition. Further research and understanding is needed to provide a clear care pathway for these adults, many of whom feel lost and ignored.

Emily has been having mysterious seizures since she was 8 or 9 years old. Her preliminary tests all came back normal, and none of the adults responsible for her care pushed any further for a diagnosis. Over time the seizures blended into her daily life, becoming a normal occurrence in Emily's mind. They even got better for a few years, to the point that Emily thought she had grown out of her mysterious ailment. But suddenly in her early 20s she was afflicted with massive seizures unlike any she had experienced before, sending her to the emergency room. This was the beginning of a health flare-up that would change the shape of Emily's life, as well as spark the search to uncover the mysteries of her seizures.

In this episode of the Major Pain podcast, Emily discusses searching for a diagnosis while simultaneously navigating life as a disabled college student. Her condition has evolved to include intense fatigue, migraines, light sensitivity, food sensitivity, vertigo, chronic pain, and difficulty standing or walking. These changes have prompted her to reevaluate how she moves through the world, taking a year off from grad school to explore accommodations such as her recent need of a wheelchair. It has taken a great deal of reframing to contextualize her evolving health situation, since adults had insisted throughout her childhood that her health issues weren't a big deal. Reaching adulthood means that Emily can finally advocate in pursuit of her own health, and diagnostic pathways are finally starting to appear. Emily is sharing her story in the hopes that others with similar journeys can feel less alone, having personally lived through the emotional toll of an isolating health situation.

Emily is running a fundraiser to help her get a service dog! Find more information here: https://indogswetrust.org/portals/emilydog/

Anyone who has passed a kidney stone will tell you of the excruciating pain, often citing it as the worst physical pain they have ever experienced. The idea of passing two stones a month indefinitely would make anyone recoil in horror, but that has been Erik's reality since he was 25 years old. Now 42, Erik has passed a total of 416 stones. Most of them have been uric acid with a few calcium stones thrown in. Erik has tried everything in his power to make this nightmare stop, but has been unable to get support from doctors to find the root cause.

In this episode of the Major Pain podcast, Erik talks us through his horrific history with kidney stones in tandem with the horrific way he has been treated by medical professionals. Doctors often refuse to believe he has passed hundreds of stones, even when he brings in the stones as proof. He has twice been mistakenly diagnosed with terminal cancer, only to find out months later that doctors misread kidney stones on his imaging. To complicate matters, Erik became addicted to opiates during his battle with constant pain. He shares tips and tricks for combating kidney stones without narcotics, as it is no longer safe for him to use them. He also discusses maintaining focus on the things that bring him joy, to move forward one day at a time.

Our bonus episode for the month of March is now available to everyone who supports this podcast on Patreon. Click here to listen.

A year ago, Chelyn suddenly lost the ability to keep food down. She was constantly throwing up, losing over 20 pounds in less than 5 months. Chelyn loves food, describing it as her love language, and was utterly confused by the sudden change in her body. Seeking help initially proved fruitless, as her doctors and insurance company assumed she was a teenager with an eating disorder and refused to authorize the appropriate tests. She got worse and worse over the course of a year, finally finding herself in the emergency room. At that point her insurance finally authorized an emergency CT scan, revealing superior mesenteric artery syndrome (SMA).

In this episode of the Major Pain podcast, Chelyn shares her experiences living with SMA. This rare disease involves compression of the superior mesenteric artery, leading to partial or full obstruction of the small intestine. She describes the intense relief of finally receiving a diagnosis, just weeks before recording this interview. Chelyn is currently getting all nutrition through a feeding tube, working with her doctors to gain 30 to 50 pounds before removing the tube. This tube goes through her nose and is very visible, but Chelyn has not let that stop her from going to school or sharing her story. She has even gone viral on TikTok with her inspirational confidence through medical adversity, not letting what others think impact her positive self image.

Jesse's mystery illness continues to go undiagnosed, and recent liver biopsy results have plunged the situation into even murkier waters. In this episode of the Major Pain podcast he sits down with his partner Andi to discuss the evolving situation. They discuss the challenges of having an undiagnosed and elusive disease, and the discomfort of a health journey that is not linear or clear. Andi also shares updates on her pituitary adenoma, after seeing a new endocrinologist recommended by podcast listener Sydney.

Throughout Minna's childhood she always felt different from her peers, as if everyone else had been given a manual on how to function that she had somehow missed. She struggled with sensory overload and difficulty managing social interaction, constantly needing to excuse herself from class to take breaks. As she got older she sought professional help but was never taken seriously, being told that all people experience these sorts of discomforts and that it was no big deal. She was taught to deny her own experience of the world so many times that she started denying it to herself, until she reached a breaking point. Desperate to understand why life was so challenging she began researching human behavior, discovering information about autism that lined up perfectly with her experiences.

In this episode of the Major Pain podcast, Minna not only shares her journey to finally receive an autism diagnosis, but also explains from a first hand perspective what living with an autistic brain feels like. She describes autism as having a brain that runs on a different operating system than non-autistic people. Society is often ill-equipped to accommodate the needs of people who don't fit into predetermined boxes, leading many to mask their true nature in order to fit in. Minna describes the exhaustion of masking constantly, feeling like she was continually hiding more and more of herself. After finally learning she is autistic, she is working to let go of unreasonable self-expectation to act like everyone else. She discusses a potential future in which people are accepted for who they are instead of constantly pretending to be something they aren't, as societal evolution opens new pathways towards acceptance.

When Sydni was 7 or 8 years old she started exhibiting symptoms of instability and difficulty walking. At 10 she was diagnosed with Friedreich's ataxia (FA), a rare inherited neurodegenerative disease. Both of her parents were unknowing carriers of the disease, giving birth to two children with FA. Over time FA causes progressive loss of feeling and mobility. Although research into this disease is ongoing, there is currently no cure.

In episode 44 of the Major Pain podcast Sydni discusses living with Friedreich's ataxia. Now 21 years old, Sydni is the CEO of her own social media company and was recently engaged to her boyfriend. Although her disease has progressed over time it has not stopped her from living her life and pursuing her dreams. Growing up with health problems caused her to become more empathetic towards others in need, giving her a deeper appreciation for the positive things in her life. She shares her hope for the future of FA research, having participated in several clinical trials. Although the therapies she trialed did not prove effective, she has hope that breakthroughs will be made to improve the lives of FA patients in the future.

Zoe's life changed dramatically at the beginning of 2021. In rapid succession she contracted Covid-19, suffered a concussion, and came down with mono. These three major stressors on her body caused a massive flare of chronic pain, functional difficulty and POTS symptoms (postural orthostatic tachycardia syndrome). At first her doctors thought Zoe was experiencing long covid, but upon digging deeper they realized she had experienced some of these symptoms before the covid pandemic began. She went through dysautonomia testing which revealed an official POTS diagnosis, and was then diagnosed with EDS (Ehlers-Danlos Syndrome) by a rheumatologist.

In episode 43 of the Major Pain podcast, Zoe discusses her difficult health journey so far. She has been working towards a music education degree but her health has made that path more and more difficult. Now that she has a diagnosis, she is looking to integrate her life goals with her health realities, potentially changing course towards social work. She discusses the importance of learning patience during her diagnostic journey, since doctors visits tend to be excruciatingly far apart. She also shares how creating TikToks has provided her a platform for chronic illness advocacy and a vital creative outlet that has brought her a valuable sense of community.

At just 16 years old, Jonelle was hit by a drunk driver and suffered a broken neck. The only reason she survived is that a friend was driving behind her and rushed to her aid, holding her head in proper alignment to open the airway that had been cut off. After being life flighted to the hospital, Jonelle's doctors were astonished that she not only survived her injuries, but did not suffer permanent paralysis. An even greater shock would come in her 20s, when Jonelle's neck was broken a second time in another car accident. This would lead to several surgeries, leaving Jonelle with a poorly understood condition called complex regional pain syndrome (CRPS).

In episode 42 of the Major Pain podcast, Jonelle shares her incredible story of survival and subsequent pain journey. CRPS is not widely known among doctors, often leading to misdiagnosis and improper care. It is characterized by intense pain localized around the site of injury or surgery, disproportionate to the injury in both severity and it's long-lasting nature. Patients face extreme difficulty in not only managing symptoms, but advocating for care in a system that often disbelieves their situation due to a lack of CRPS awareness. Jonelle shares stories of shocking negligence from multiple doctors, as well as deeply personal reflections on her difficult path. Jonelle has turned to activism through her work with the National Pain Council, helping other chronic pain sufferers get the care they deserve. She has learned a great deal about self-advocacy, and finding joy on the other side of trauma.

This week Jesse participated in a panel discussion on Invisible Disabilities with the ConnecTra Society. You can watch the archived live stream here: https://www.youtube.com/watch?v=mxM4GqjpHUM