POTS (Postural Orthostatic Tachycardia Syndrome)

The phrase "overcome a medical condition" typically implies successfully managing or alleviating a health issue or disease to the point where it no longer significantly interferes with an individual's daily life.

WHAT IS POTS?

POTS stands for "Postural Orthostatic Tachycardia Syndrome." It is a medical condition characterized by an abnormal increase in heart rate when transitioning from a lying down or sitting position to a standing position. This condition can result in symptoms such as lightheadedness, dizziness, rapid heartbeat, fatigue, and sometimes fainting (syncope).

The exact cause of POTS is not always clear, but it is often related to dysfunction in the autonomic nervous system, which regulates basic bodily functions like heart rate, blood pressure, and digestion. POTS can be challenging to diagnose and manage, and its symptoms can vary in severity from person to person.

To meet the diagnostic criteria for POTS, the heart rate typically needs to rise by at least 30 beats per minute, although some healthcare professionals might use slightly different criteria.

It's essential for individuals experiencing these symptoms to consult with a medical professional for proper evaluation and diagnosis, as well as to discuss appropriate treatment options.

WHAT CAUSES POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) may be caused by factors such as autonomic nervous system dysfunction, genetic predisposition, viral infections, autoimmune conditions, deconditioning, hormonal changes, hypermobile Ehlers-Danlos Syndrome, mitochondrial diseases, deconditioning, infections such as Lyme disease, mast cell disorders, toxicities. See a more comprehensive list of causes here.

DESCRIBING MY POTS EXPERIENCE

Initially, I believed it was anxiety. The moment I tried to walk, a profound weakness washed over me, accompanied by an intense surge of heat and a heart racing as if in a marathon, turning even the simplest movements into a daunting task. Mornings and nights felt like enduring a relentless series of panic attacks.

I sought solace in medications, but their effects were mixed, sometimes leaving me feeling worse. The turning point came when an anxiety medication made me feel like I was having a heart attack as my heart rate skyrocketed to 209 when I attempted to stand. My vision darkened, and my heart rate fluctuated wildly, soaring past 200 and plunging into the 50s. That day, I knew something had been awry for a while because I had encountered similar symptoms before, though not as severe. A hospital visit led to a diagnosis of ‘serotonin syndrome’. My attempts to explain to the doctor that there was something wrong with my heart were met with reassurances about its soundness, attributed to my age. I emphasized that the symptoms occurred when I attempted to stand and walk, not when lying down. Unfortunately, things continued to deteriorate from there.

I turned to "Dr. Google," who suggested something called POTS. It turned out to be the answer I had been seeking.

I BECAME A “HEALTH DETECTIVE”

I transformed into a health detective out of sheer necessity as my quality of life plummeted. Struggling with part-time work, intermittent disabilities, and the loss of a fulfilling life, I was determined to unravel the mystery because I simply couldn't accept that this was the end of the road. They often say that everything happens for a reason, right? While the full story could fill a book, let's fast forward to the first answer that made genuine sense – SIBO.

My "Aha!" moment arrived when I stumbled upon research (PMID:29326369) regarding SIBO (Small Intestinal Bacterial Overgrowth), MCAS (Mast Cell Activation), and POTS, and it was as if a light bulb had been switched on. Astonishingly, a few months earlier, a naturopath had suggested the possibility of SIBO.

My SIBO test confirmed a positive result, deemed one of the most severe cases according to numerous practitioners, and I exhibited all the classic symptoms of MCAS. Despite struggling to tolerate the treatments, I did manage to find some relief through antihistamines and mast cell stabilizers.

I also did a GI-MAP stool test that showed lots of dysbiosis and inflammation.

BUT THE DETECTIVE IN ME SAID THERE WAS MORE TO IT THAN THIS….

After seeing some improvements by working on my MCAS, my condition reached a plateau, and I was still mostly bedridden. The brain fog had become so intense that I had to stop working, and driving was nearly impossible. I was still having so many symptoms.

One day, I woke up with a realization—it had to be mold. I had glanced into it a year earlier, but my then-practitioner didn't give it much attention. In hindsight, I wish I had taken action at that point, as it indeed turned out to be mold illness.

I was already on the path to improvement when I sought the guidance of a naturopathic doctor to assist me in navigating my mold illness journey. This practitioner diagnosed me with reactivated EBV, elevated levels of lead in my body, and a host of other conditions. However, it was mold exposure that significantly worsened my health. It's crucial to acknowledge that in water damaged buildings, it's not just mold that is releasing toxins, but bacteria as well. I strongly believe that research and awareness in this field will continue to expand in the coming years.

MY OFFICIAL POTS DIAGNOSIS

The path to my official POTS diagnosis in 2022 was undeniably challenging.

My symptoms first appeared in 2019. By the time I received my formal diagnosis, I had already made considerable progress, but still tested positive. At one point, my standing heart rate reached 180-190 beats per minute, but it gradually improved to 160, then 140, then 120 or lower.

MY POTS DIAGNOSIS - NASA 10 MINUTE LEAN TEST

HERE IS WHAT HAS HELPED ME THE MOST:

MOLD AVOIDANCE. This has made a world of difference to me. I personally think all POTS patients should rule out mold toxicity. My gut wasn’t able to heal until I addressed the mold.
TREATED MY GUT ISSUES. Gut issues can contribute to MCAS, which can contribute to POTS. SIBO is a huge driver of MCAS.
TAKING ANTIHISTAMINES AND MAST CELL STABILIZERS.
LOW HISTAMINE DIET. I used to eat only low histamine foods. I eat a moderate histamine diet now. I avoid high histamine foods as much as possible. There are certain ones I never have. Interestingly enough, some foods that are very high in histamine, are also “moldy”. I do enjoy a glass of wine sometimes, to be honest. I just need to make sure there is room in my “histamine bucket “ for it.
Supporting my liver and cell membranes by taking phosphatidylcholine, milk thistle, high DHA fish oil.
Digestion support, vitamins, minerals, probiotics and antioxidants.
STRESS MANAGEMENT. This is extremely important and should be part of any POTS treatment/symptom management.
HYDRATION AND ELECTROLYTES.
*PLEASE NOTE: THIS IS NOT A COMPREHENSIVE LIST OF THE HEALTH SUPPLEMENTS AND THINGS I HAVE TRIED. THERE ARE MANY OTHER FACTORS TO CONSIDER WHEN DEALING WITH A COMPLEX CONDITION LIKE POTS. I HAVE ONLY LISTED THE ONES THAT HAVE HELPED ME THE MOST. ALWAYS CONSULT WITH YOUR HEALTHCARE PROVIDER BEFORE FOLLOWING ANY DIETS OR TAKING HEALTH SUPPLEMENTS.

HOW I AM DOING TODAY

Today, it's almost unimaginable that I once had pretty severe POTS. My condition has improved significantly and is now quite mild compared to how it used to be. I've noticed it flares usually during times of high stress. Additionally, if I consume high-histamine foods in excess, I may experience worsening symptoms.

Most days I find myself wondering if I'd still test positive for POTS, while some days I experience some symptoms. I'm aware that if I were to stop all the strategies and practices I've put in place, I might regress. I've reached a point where I can exercise, go hiking, and lead a normal life. This outcome was something I never believed possible.

I might not be 100% healed, but I overcame POTS. I consider myself a success story.

A FEW MORE WORDS….

POTS is an incredibly debilitating condition that's challenging to put into words. It completely upended my life. In many ways, I believe POTS is the body's way of saying "I've had enough". Over time, a complex interplay of infections, gut issues, toxins, chronic stress, genetics, and numerous other factors can contribute to the development of POTS.

If you're reading this, my heartfelt hope is that my journey can offer you a glimmer of hope and the answers you've been seeking.

IMPORTANT INFORMATION: This blog is for informational purposes only. It is not meant to diagnose, treat or cure POTS. I talk about my very personal experience with POTS, but I want you to remember that everyone is different and that POTS has multiple root causes. Please consult with your healthcare practitioner before taking any supplements or following any diets.

How I overcame POTS (Postural Orthostatic Tachycardia Syndrome)