Major Pain

Andi and Jesse wrap up season 2 of Major Pain by sharing their health updates and reflecting on the past year of the show. Jesse discusses his potential diagnoses of mast cell activation syndrome and small fiber neuropathy, while Andi tells us about her vocal surgery recovery.

Michelle is an idiopathic intracranial hypertension patient and advocate.

Michelle is unsure when her journey with idiopathic intracranial hypertension (IIH) began. She started experiencing chronic migraines and pulsatile tinnitus in her 20s, which may have been the first sign. However, a freak accident in which a man fell from a theater balcony onto Michelle in 2017 intensified her symptoms, leading to an IIH diagnosis in 2019.

Intracranial hypertension is characterized by pressure inside the skull caused by a buildup of cerebrospinal fluid around the brain. Although there are many reasons this can happen such as a blood clot or infection, Michelle has the idiopathic form meaning there is no confirmed cause for her condition. Symptoms include headache, twitching, temporary blindness, absent seizures, fatigue, brain fog, memory loss, and papilledema (optic nerve swelling).

In 2017, Michelle attended a play at her local theater. She decided to stay in her seat during intermission, during which a man fell 30 feet from the balcony above. He landed on the left side of Michelle's head and shoulder, breaking the metal chair beneath them. After this incident Michelle began experiencing visual disturbances, so she went to have her eyes checked. She was told her optic nerve was swollen and sent to the ER. During a spinal tap the opening pressure of her spinal cord was measured and it was very high, leading to her diagnosis with IIH.

In this episode of the Major Pain podcast, Michelle tells us about the incredible accident that worsened her disease, the diagnostic process, and how she manages IIH. Recently her situation was complicated by a Crohn's disease diagnosis, requiring changes to her diet that are contrary to the diet recommended for IIH. To vent frustration while also building community around chronic illness, Michelle launched the IIHWarriors platform. She creates content on TikTok and runs an Etsy store, for which all proceeds go to IIH research at Johns Hopkins University.

IIHWarriors Linktree: https://linktr.ee/IIHWarriors

Coach Ki is a wellness coach and fibromyalgia advocate.

After being diagnosed with fibromyalgia, Kiera (AKA Coach Ki) did some online research to see if she would be able to continue her fitness journey. She was disheartened to find several accounts of people unable to continue training with this disease. Kiera has been passionate about fitness since she was 14 years old and feared losing herself if she couldn't train anymore.

Fibromyalgia is best known for the presence of widespread chronic pain, but is also associated with fatigue, brain fog and several other symptoms. On a mild day, Kiera experiences radiating pain in her shoulders, wrists, knees, and neck. On a severe day this pain spreads throughout her entire body, making any movement difficult. These symptoms appeared mysteriously during her mid-20s while she was serving in the US Army. It took over a year to get a diagnosis from a military doctor.

Initially, Kiera rebelled against the idea of having a chronic health condition, but denying this reality only worsened her symptoms. She is now coming to terms with her disease and learning to integrate it into her fitness practice. She is discovering ways to train her body while managing her fibromyalgia pain (such as using a tens machine), taking breaks more often, adjusting expectations and listening to her body. She is excited to share what she's learned on social media (including TikTok and Instagram), and through her work as a higher self mentor and life elevation strategist.

In this episode of the Major Pain podcast, Kiera discusses her fibromyalgia diagnosis and how it has impacted her life. She has also been diagnosed with hypermobility, and is currently searching for a connection between her two conditions to determine if she has a connective tissue disease like EDS (Ehlers-Danlos Syndrome). As a fiancée and mother of two, fighting for her health is more than just a personal quest, as she wants to ensure she can be there for her family. Her fibromyalgia journey has already taught her a great deal about empathy, perseverance, and the importance of acceptance.

Learn more about Coach Ki on her website: https://www.herdivinealignment.com

Patreon subscribers can listen to the bonus episode for the month of March here: https://www.patreon.com/posts/march-bonus-79902249

Toya Jules was first diagnosed with lupus in her teens, and lupus nephritis in her early 20s.

In her early 20s, Marimee (who goes by Toya) was diagnosed with lupus nephritis. This is a complication found in people with systemic lupus, in which lupus autoantibodies damage the kidneys, causing impaired function or even kidney failure. At first, Toya was horrified to discover she had this disease, being forced to confront potentialities like dialysis and a kidney transplant. However, after a tumultuous journey in which she learned much about advocating for herself, Toya is now in remission after trying a game-changing medication.

Systemic lupus is an autoimmune condition in which the immune system mistakenly attacks healthy tissue throughout the body. Toya was first diagnosed with this disease at just 15 years old, a revelation that completely disrupted her life. During her senior year of high school she started experiencing extreme joint pain while suddenly becoming allergic to almost everything. Her allergist was the first to suggest lupus as a diagnosis. The three month wait to see a rheumatologist was almost unbearable as she experienced constant fevers. Once her lupus diagnosis was confirmed she was determined not to let this disease slow her down, but soon after starting college she recognized the need to put school on pause and rest.

Unfortunately, resting did not provide any health benefit. She continued to decline and ended up in the hospital for 10 days, where she learned that she had lupus nephritis and her kidneys were failing. This ended up being a turning point for Toya, as this traumatic revelation helped push her to advocate for herself more vigorously. She did some research and discovered positive outcomes for lupus patients taking the drug benlysta. After pushing her doctor for a prescription, Toya now finds herself in remission with dramatically improved kidney function.

In this episode of the Major Pain podcast, Toya discusses how this traumatic medical journey has inspired her to create the Village Tree Health Support Network, a startup nonprofit designed to be a hub for patient care access and case management. She describes this endeavor as "something that I was meant to do. I'm able to turn my pain into purpose." She now recognizes the importance of advocating on behalf of the chronic illness community, discovering a passion and direction she never would have considered without her diagnosis.

Connect with Toya on Instagram @toyajules_

Check out Jesse's appearance on the Seizure Salad podcast: https://seizuresalad.podbean.com/e/misdiagnosis-rollercoaster-w-jesse-mercury-of-the-major-pain-podcast/

Jo's health went haywire after being diagnosed with pancreatitis in 2017.

In 2017, Jo began experiencing intense pain under her rib cage that traveled to her back, as if she was being impaled. She had complained of various pains throughout her life that doctors always brushed off, so at first she had no desire to seek professional help. But after two weeks of this stabbing pain, something had to be done. She was expecting doctors to run tests and once again tell her everything was normal, but was shocked when they discovered acute pancreatitis.

Pancreatitis refers to inflammation of the pancreas and can have many causes. For Jo, her pancreatic ducts had narrowed, backing up the normal flow of enzymes and causing intense pain. Jo says this was the tipping point that caused the rest of her body to go haywire. Since then her list of diagnoses has grown dramatically to include Sjogren's syndrome, small fiber neuropathy (SFN), mast cell activation syndrome (MCAS), cervical cranial instability (CCI) and several other conditions. She has also found an explanation for her various pains throughout her earlier life, after being diagnosed with the genetic connective tissue disease Ehlers-Danlos Syndrome (EDS).

In this episode of the Major Pain podcast, Jo talks us through some of her intense medical journey so far. Her pancreatitis has transitioned from acute to chronic, and is being managed through injections to block the celiac plexus nerves in the abdomen. Although her pancreatitis is still causing intense pain, this celiac plexus block dulls the pain signals to a more manageable level.

During this interview we talk extensively about small fiber neuropathy, a condition that arises after continued damage to nerve endings. SFN can cause a wide variety of symptoms including extreme sensitivity to touch, burning sensations, temperature dysregulation, gastrointestinal issues and even paralysis. Jo talks us through her diagnostic process for SFN, a skin punch biopsy where doctors looked at her small nerve fibers under a microscope. Jo's SFN is believed to be caused by her Sjogren's syndrome, although she has a few diseases which may be causing this comorbidity.

Jo is the kind of person who likes to be in control of her life, and found it emotionally devastating when chronic illness took some of that away. Sometimes the way she was treated by medical professionals was even worse than her physical pain, adding another layer of challenge to an overwhelming situation. Still, Jo has learned invaluable lessons from her medical journey. She realized she needed to stop living in the past and worry less about the future, leaving her to find things to be grateful for in the present moment. In 2019 she was featured on 'Chasing the Cure' with Ann Curry, allowing her to educate a wide television audience on her unique story.

During this interview we discuss the low histamine diet. Find the histamine master list here: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

We also discuss an article on small fiber neuropathy which can be found here: https://www.foundationforpn.org/small-fiber-neuropathy-causes-it-all/

Find Jo on Twitter

Vicky has been diagnosed with multiple autoimmune conditions, including rheumatoid arthritis, Sjogren's syndrome, Raynaud's disease, interstitial cystitis and gastroparesis.

According to the National Library of Medicine, about 25 percent of patients with an autoimmune disease will develop additional autoimmune diseases. That is definitely true of this week's podcast guest, Vicky. Her first diagnosis of autoimmune rheumatoid arthritis came during high school, and she was diagnosed with Sjogren's syndrome a few years later. This condition causes the moisture-secreting glands and mucous membranes to be drier than normal, resulting in dry eyes and mouth.

Vicky has also been diagnosed with interstitial cystitis, Raynaud's phenomenon and gastroparesis, all of which are suspected to be autoimmune related. Interstitial cystitis affects the bladder and can cause urinary retention or hyperactivity, pain or ulcers. Vicky says it feels like having a UTI all the time. Raynaud's phenomenon causes fingers and toes to feel numb and change color. Gastroparesis is characterized by slowing or even halting of the muscles in your stomach. It can be a comorbidity in many conditions including diabetes, Parkinson's, EDS and MS, occur idiopathically, or in Vicky's case be autoimmune in nature.

Naturally, having this many conditions coexist in one person can feel extremely overwhelming. After her fourth diagnosis, Vicky didn't want to deal with any of this anymore. She was sick of going to doctors, sick of getting bad news about her health, and aching to forget that these health challenges existed. But ignoring chronic illness never makes it go away, and over time Vicky made huge progress learning to manage these diseases. She is now in a relatively stable place thanks to her current treatment regiment.

In this episode of the Major Pain podcast, Vicky walks us through her many diagnoses and what she's learned along the way. She shares firsthand experience of what these diseases feel like, as well as living through an unexpected bout of idiopathic intracranial hypertension. She also discusses what she's learned about navigating the medical system and how to push through the many roadblocks chronic illness can present.

Micah started the Seizure Salad podcast after his diagnosis with breakthrough adult-onset epilepsy

As a child, Micah would experience episodes where he would space out or become manic in class, leading his teachers to assume he had a mood disorder. He would have night terrors where his consciousness would expand beyond his body, believing he was connected to something otherworldly. He chalked it up to aliens or magic, but eventually moved on as these episodes stopped happening in his 20s. It wasn't until he was diagnosed with breakthrough adult-onset epilepsy that he realized these childhood issues were likely his first seizures.

Micah was almost 50 years old when his seizures fully broke through. He had gone outside for an early morning stretch, blacked out, and woke up 25 minutes later sprawled over a bike rack with torn muscles in his shoulder and back. This was his first generalized seizure, also known as a grand mal. Over the next few years he would try 14 different combinations of medications trying to minimize his now constant seizures, but the side effects were extreme and the benefit was unsatisfactory.

Eventually, Micah's doctors recommended he undergo surgery to install a responsive neurostimulation system (RNS). They cut out a section of his skull to install a tray which holds the device, implanting it just behind his right temple. For the first month after installation his RNS only recorded seizure activity, providing his doctors data to tune the device to his individual needs. Then they flipped it on, and it began sending counter-pulses of electricity into his brain to counteract his seizures in real-time. In the months since turning on his RNS device, Micah has had no significant seizures.

In this episode of the Major Pain podcast, Micah talks us through his experiences with breakthrough adult-onset epilepsy, as well as his RNS. When his epilepsy broke through life came to a screeching halt, severely limiting his functionality and productivity. Now that his physical situation has improved, he is beginning the process of dealing with the emotional and mental fallout of such a fundamentally challenging experience. Micah creates his own podcast called Seizure Salad, chronicling his journey with epilepsy while connecting with fellow patients and advocates. Find it at https://seizuresalad.org/

Joey Torre feels that advocating on behalf of fellow hidradenitis suppurativa patients is his life's purpose.

Joey Torre lives with hidradenitis suppurativa (HS), a painful, chronic skin condition that affects up to 2% of the population. The disease causes the formation of bumps, lesions, or boils in sweat gland areas, such as the armpits and groin. Joey also experiences extreme fatigue, which can sometimes accompany HS, requiring him to constantly manage his energy levels to stay productive. His journey with HS, spanning 15 years so far, has impacted every aspect of his life and taken him in unexpected directions.

In his early 20s, shortly after being diagnosed with HS, Joey rebelled against the notion that he needed to adjust his life to accommodate a chronic health condition. He was a heavy smoker who enjoyed partying and drinking, habits that could exacerbate the severity of his HS flares. During this time, his flares were rock hard, painful, oozing, and pungent. After years of enduring not only physical pain and discomfort but also anxiety and depression related to his disease, he finally made the decision to adopt some lifestyle changes.

Joey began working towards a life of discipline, eliminating smoking and drinking while adjusting his diet and adding in some exercise. It took time, but these lifestyle changes eventually calmed down his HS flares to more manageable levels. He began to examine his relationship to HS, realizing that hiding this part of himself was doing more harm than good. This led him to become an HS advocate through social media, educating others about his disease while creating community for those who share his diagnosis.

In this episode of the Major Pain podcast, Joey recounts his journey with hidradenitis suppurativa so far and describes how learning to manage this disease has made him a better person. Initially, he would have done anything to eliminate HS from his life, but he now considers his work as an HS advocate to be his life's purpose. He also shares practical tips for managing this disease, and common misconceptions people often have about HS.

Find more information about HS at https://hsdisease.com, including articles written by Joey.

Our Major Pain bonus episode for the month of February is now available. While Jesse's health has moved in a positive direction, Andi has been having the opposite experience. They discuss their crisscrossing journeys in this bonus episode for our Patreon subscribers. Click here to listen.

The Hypertrophic Olivary Degeneration Association (HODA) was founded by Christina Coates after being diagnosed with this rare disease.

When Christina turned 40 she suddenly started having migraines every day. She was going to work as an accountant dealing with spreadsheets and math, while splitting headaches turned each day into relentless agony. After a month of this pain she finally went to see her doctor, who ordered an MRI. The results arrived as a voicemail, stating there was an abnormality on her brain and she should go see a neurologist.

Christina soon discovered that she had a cavernous malformation (also known as an angioma) on the fourth ventricle of her brain, adjacent to her brain stem. A cerebral cavernous malformation (CCM) is an abnormal bundle of stretched out blood vessels that may bleed into the surrounding area. Christina was instructed to monitor this legion with regular MRIs. Although it initially remained stable, in 2020 imaging showed that her CCM was filling up with blood. Since this was adjacent to Christina's brain stem, there was serious risk of bleeding into her spinal fluid, or even the chance this CCM could rupture. After discussing with her doctors and family, Christina knew it was time for surgery.

Christina's neurosurgeon successfully resected the entire cavernous malformation from the fourth ventricle of her brain, but shockingly did not prepare her for the post-surgery recovery period. Christina had to re-learn basic functions like walking and showering, a possibility that was never mentioned to her prior to surgery. She had no chance to prepare herself emotionally or mentally for these challenges, or to prepare her 20 year old child to see her mother struggle in this way. Given no choice but to overcome these obstacles, Christina committed herself to her physical therapy and was able to return to work 6 weeks later.

After returning to work Christina developed intense pain behind her eye, while her vision started looking bouncy. She was sent in for another MRI, and a legion was discovered on her medulla oblongata (a structure at the base of the brain stem) that had not been present prior to surgery. Her doctors were stumped by this development, so Christina sought a second opinion from the Mayo clinic. There she was diagnosed with hypertrophic olivary degeneration (HOD), an exceedingly rare and poorly understood condition.

Hypertrophic olivary degeneration affects one or both inferior olivary nuclei, a pair of olive-shaped structures in the medulla oblongata responsible for coordinating signals from the brain to the spinal cord. With HOD this olivary nucleus first expands like a balloon then begins to atrophy. This causes a wide range of symptoms that may mimic multiple sclerosis (MS), and varies widely from person to person.

Being diagnosed with this degenerative neurological disease was a huge blow to Christina. Initially she found it difficult finding the will to continue living, but eventually discovered new purpose after creating the Hypertrophic Olivary Degeneration Association (HODA), a nonprofit dedicated to raising funds for HOD research while performing patient outreach and educational advocacy. Hear a first-hand account of her incredible story and learn about this rare disease in this week's episode of the Major Pain podcast.

Find HODA online at https://hodassoc.org/

Cover artwork for 'Compass Points the Way' by Alexis Kline

As a child, Alexis Kline hoped to one day be a professional soccer player. That all changed at 12 years old during soccer tryouts when Alexis started feeling so weak and sore that she needed to visit the doctor. Her soccer dreams were dashed when she was diagnosed with dysautonomia, a condition in which the autonomic nervous system functions incorrectly. This can have wide ranging effects on the body, potentially involving the heart, bladder, intestines, sweat glands, pupils, and blood vessels. To this day, Alexis's exact form of dysautonomia remains unknown.

Alexis has channeled her years of experience navigating chronic illness into her new middle grade novel 'Compass Points the Way.' The author's story is mirrored in the main character Allie in that she dreams of nothing but soccer, but diverges from the author's reality in that Allie is diagnosed with POTS, or postural orthostatic tachycardia syndrome. A huge element in the book is Allie's relationship with her dog Compass, and how this canine friend helps inspire Allie to switch gears and find new purpose in life after her POTS diagnosis. Although POTS is indeed a form of dysautonomia, Alexis herself does not meet the criteria. She decided to focus on POTS in her novel to provide representation for this specific disease, as it is being diagnosed in higher numbers than ever before.

In this episode of the Major Pain podcast, Alexis details the inspirations behind 'Compass Points the Way' while also sharing her tumultuous path through chronic illness. When she initially left soccer practice due to illness she was immediately diagnosed with mono, but never fully recovered. Doctors have debated whether or not to qualify her as having CFS/ME (chronic fatigue syndrome or myalgic encephalomyelitis), but have leaned towards believing this mono infection triggered a flare of an underlying illness. This theory is influenced by the presence of Alexis's comorbidities, including Chiari malformation and small fiber neuropathy.

Although Alexis has not given up on uncovering the mysteries of her chronic illness, she has also turned her attention to improving her quality of life within her limitations. She has discovered that mobility aides including a walker and wheelchair allow her to participate in life more fully. Being an author was always a distant dream, but Alexis turned it into a reality after realizing she was unable to maintain consistent employment. By refocusing her life goals and aspiring to reach new dreams, she has proven that finding direction and meaning is still possible while living with chronic illness.

Find Alexis's published works at https://www.underthesunpublishing.com/