Working Through Some Major Health Issues!

My Nightmare with POTS

It was a cool November morning in 2023 when my life took a dramatic turn. I was walking down the stairs outside my Honeymoon Island condo, carrying a heavy plate in one hand and a big tea mug in the other. Both of my hands were full, and I had no way to catch myself when I suddenly fell. In an instant, I flew backward, landing hard on my head and back. The pain was excruciating, and blacking out was even worse.

As I lay there, unable to move, my mind raced: Please, God, if I’m not paralyzed, I’ll accept any back injury. It was a desperate plea, and little did I know how much this injury would define the coming year. My neighbors found me, but everything felt surreal—I was in so much pain, nauseated, and disoriented. I factually couldn’t move.

The immediate aftermath was a blur. I was battered, bruised, and barely able to lie on my body for months. I sought physical and spiritual help, thinking the worst had passed. But as the months went on, strange symptoms started creeping into my life and escalating from day to day.

The First Signs

The first major episode occurred in January 2024 while I was on a business trip to New York. Out of nowhere, I became incredibly nauseated, my heart raced uncontrollably, and fatigue consumed me. It was alarming but seemed like an isolated incident. Then, in June, I experienced another severe episode while walking near the White House in Washington, D.C., on a sweltering day. My heart rate skyrocketed, and I became dizzy and faint. I had to pull over in my car and call 911. Paramedics arrived to find my resting heart rate to be sky-high—far above the normal range of 60-100.

Over the next few months, these episodes became more frequent. I began attributing them to various factors: low sodium levels, dehydration, and even diet. Nothing seemed to help.

Escalation

By July, things took a turn for the worse. I started incorporating heavy weight training into my fitness routine, guided by my friend Chris. The intense exercise regimen seemed to exacerbate my symptoms. My heart rate would spike uncontrollably, reaching 150, 160, or even higher. I felt faint, nauseated, dizzy, and utterly helpless. I began carrying a pulse oximeter and monitoring my blood sugar levels, which sometimes dropped dangerously low. Despite my best efforts, my resting heart rate would continue to beat above 150 every once in a while (which is called tachycardia; your heart beating above 100 beats per minute).

By September, I was in constant physical distress. The episodes were happening closer together, and the symptoms were debilitating. Medical advice ranged from eating more carbs to "just calming down." But calming down felt impossible when my heart was pounding through my chest, and I was barely able to function.

Seeking Help

In September, October, and November, I could no longer sleep alone in my apartment. I stayed with friends, who helped me through the worst episodes. My weight plummeted as the constant nausea made it nearly impossible to eat. Despite hydrating religiously with mineral-rich salt and electrolytes, I felt like I was deteriorating.

I started visiting emergency rooms regularly, sometimes daily, desperate for answers. Hospitalizations, misdiagnoses, and countless tests followed. One ER visit revealed a fractured T4 and T5 vertebrae on a CT scan from my fall months earlier. It was a shocking discovery, but it didn’t explain the persistent chest pain, racing heart, or other symptoms. I was told it was costochondritis, an inflammation of the cartilage that connects a rib to the breastbone (sternum), and that it could be due to the broken vertebrae directly behind that breastbone. Pain caused by costochondritis might mimic that of a heart attack or other heart conditions. I took some Ibuprofen for the inflammation.

Frustrated, I began researching on my own. I stumbled upon conditions like autonomic dysreflexia and dysautonomia—nervous system disorders that could explain my symptoms and can occur from an injury like that. Despite this, every doctor dismissed the possibility. I was told it was anxiety or that my symptoms were difficult to diagnose and to continue seeing specialists. "Your heart is healthy, Miss Moon."

The Worst Days

One night, after being discharged from the hospital, I took a hot shower and nearly fainted. My blood pressure spiked, and my heart raced uncontrollably. I ended up back in the ER. This time, I was admitted after an EKG captured an episode of tachycardia—an abnormally fast heart rate. But even with clear evidence, the doctors still dismissed my condition, after being admitted to the hospital because nothing happened again while I was there overnight.

I refused to accept that anxiety was the root cause because I was doing well before and when I didn’t have the episodes, and it would occur when I was relaxed, happy, or in a deep sleep. I pushed for more tests, including an MRI, echocardiogram, heart monitors, and consultations with specialists. I was finally prescribed beta blockers (which slow the heart) to manage my heart rate, but the side effects were debilitating. My heart rate would drop dangerously low (even in the 30s and 40s), leaving me exhausted and unable to function.

A Diagnosis

After countless hospital visits, I finally found a cardiac electrophysiologist (a surgeon who specializes in the rhythm of the heart—an electrician of the heart, if you will) and specialized in autonomic disorders. He was in Jupiter, Florida. I found his POTS video on YouTube. He diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia. POTS causes the heart rate to increase dramatically when transitioning from lying down to standing, often leading to fainting, dizziness, and other symptoms.

It all started to make sense. My fall had likely triggered this condition, which affects the autonomic nervous system. POTS is often underdiagnosed and misunderstood, especially in women. While the exact cause is unknown, it can be exacerbated by trauma, hormonal changes, or even viral illnesses. I have definitely fainted over the years, always suffered from very low blood pressure, weakness, nausea, and many other symptoms that fit.

Moving Forward

The diagnosis was a turning point, but it wasn’t a full solution yet. Managing POTS requires a multifaceted approach, including medication, dietary changes, and lifestyle adjustments. It’s a complex syndrome, and most doctors don’t know much about it, let alone how to treat it. I’ve been advised to increase my salt intake and stay hydrated—something I was already doing through my mineral salt company that had almost launched. I also need to pace myself physically and avoid triggers like heat and prolonged standing.

I share my difficult story with you from my hospital bed in Palm Harbor, Florida. I had to call 911 again 3 days ago as my heart was racing trying new medication and was immediately admitted to the telemetry cardio floor with a heart monitor. Yesterday was hard because when I stood up, my heart raced to almost 190 (which is so dangerous) and did that again later when I was laying down. Luckily, a cardiologists was walking by my room and did breathing exercises with me while he had me take a beta blocker. It was so stressful. One of the most debilitating days of my life again.

Once my heart rate went down, they admitted me to inpatient care and have been continuing to monitor my heart 24/7 under observation of the new medication dosage (which they doubled). It makes me very nauseated and wipes me out physically, so we’re seeing if my body can adjust to the symptoms or if I need to change meds again.

I’ve barely been able to work the last couple of months or enjoy any pleasure. I’m scared to be alone when it happens, so I stay with friends every single night for well over a month now. My apartment is empty and the bills stack up.

It’s morning now. I couldn’t finish last night because my heart continues to race on meds. It’s Wed, Nov 20. Waiting to see if heart is ok and if I’ll need surgery. I hope not but I also want a solution to all the pain and discomfort.

I’ve always been very independent. I raised 2 daughters on my own, who are now adults and I can’t even take care of myself now. It’s hard to live with the change at the moment. I’m even dizzy in my hospital bed as I write this. I feel a bit embarrassed about the whole thing but I know that when I find a way to survive better, I will help educate others so people who have this don’t suffer like I did and still am.

Despite the challenges, I feel a sense of relief knowing what I’m up against. POTS is a chronic condition, but it’s manageable with the right care and support.

This amazing cardiologist also told me that I have hypermobility joint hypermobility syndrome. This is a connective tissue disorder that could be a genetic disorder called Ehlers-Danlos syndrome (EDS)—a group of inherited disorders that affect your connective tissues, primarily your skin, joints, and blood vessel walls. Many patients with hypermobility spectrum disorder and hypermobile EDS either have symptoms of or have been diagnosed with POTS or dysautonomia. Brutal.

Nonetheless, mystery solved. Onto getting better somehow now.

Reflections

This past year has been the hardest of my life. Falling down those stairs set off a chain reaction that left me physically and emotionally drained. The misdiagnoses, dismissive doctors, and constant fear of the unknown were almost too much to bear. But through it all, I’ve learned the importance of advocating for myself and trusting my instincts.

While my journey with POTS and EDS is far from over, I’m determined to regain control of my life. I’m grateful for the friends who supported me, the specialists who finally listened, and the strength I found within myself to keep fighting.

For anyone else struggling with invisible illnesses, know this: you’re not alone. Keep pushing for answers, and don’t let anyone dismiss your pain. Your health is worth it.

Next Steps For Me

Consult with a Geneticist in Miami.

I will visit a recommended geneticist who specializes in Ehlers-Danlos Syndrome (EDS) for testing and to help create a comprehensive treatment plan.

Ongoing care with the Electrophysiologist

I will continue seeing my electrophysiologist to manage my heart condition and work toward regaining normalcy in my daily life. Adjustments to my beta blockers and other medications will be made to prevent my heart rate from spiking into dangerous ranges, such as the 180s.

Endocrinology Consultation in Tampa

I will maintain regular visits with my endocrinologist in Tampa to address adrenal function and explore any additional treatments that may aid in my recovery.

Sleep Girl. Sleep!

Prioritizing better sleep will be crucial for my recovery. I will also begin a manageable exercise routine, such as Pilates, to help rebuild strength and endurance.

Work with a Nutritionist

I will seek guidance from a nutritionist to ensure I am properly fueling my body to support both my recovery and overall well-being.

Addressing Medical Bills

I will navigate the financial challenges of medical bills, working with my catastrophic insurance to cover as much as possible, and addressing the remaining balances from all the hospitals and facilities.

Launch Pink Moon Salt

I am excited to launch my mineral salt company, Pink Moon Salt, and contribute to global hydration by providing essential minerals to support health.

Continue Creating Art

I will keep creating beautiful works of art with my moon paintings, aiming to bring beauty, peace, and inspiration to the world.

Educate Others About POTS and EDS

I will dedicate myself to educating others about Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers-Danlos Syndrome (EDS). My goal is to prevent others from enduring the confusion, misdiagnosis, and suffering I experienced—ensuring they receive the correct diagnosis and are not stigmatized or falsely labeled with anxiety.