What it’s like living with postural orthostatic tachycardia syndrome, aka POTS

I sat in my cardiologist’s office, waiting for him to go over my electrocardiogram (EKG) results and various blood tests. “Everything looks normal,” he said without looking up. Relief did not wash over me. Instead, I felt annoyed. I still didn’t have an explanation for my years of frequent fainting spells and bouts of low blood pressure. I had seen multiple doctors over the years, but no one could give me a definitive diagnosis. 

“Based on your history of symptoms,” he continued. “I believe you have postural orthostatic tachycardia syndrome (POTS).” He later confirmed his suspicions with a standing test. I was relieved to have an answer—but needed to learn to live with it.

What is postural orthostatic tachycardia syndrome? 

POTS is a group of symptoms that occur when going from a sitting position to standing upright. It’s characterized by a rapid increase in heart rate of at least 30 beats per minute (BPM) induced by changing body position to an upright state. Contributing to the problem is a gravity-induced redistribution of blood volume to the abdomen and legs when standing, effectively reducing the volume available centrally for the heart to pump. In isolation, POTS is not associated with a reduction in blood pressure, but orthostatic hypotension is a related and sometimes coexisting condition that does involve a drop in blood pressure with standing.  

POTS can cause lightheadedness and fainting. Symptoms can be cardiac (rapid palpitations) and noncardiac (“brain fog,” nausea, fatigue, dizziness, and sleep problems). The syndrome affects 1 to 3 million Americans and is most commonly seen in white women aged 15 to 50. 

Diagnosing POTS

Just like in my case, POTS can be difficult to diagnose. That’s because there are many symptoms associated with the syndrome, but they can look a little different in each patient. Healthcare providers will often perform a comprehensive physical exam and bloodwork to rule out other causes before measuring heart rate while lying down and standing using a tilt table test. If other causes for orthostatic tachycardia, such as blood loss or dehydration are ruled out, a diagnosis of exclusion is made. 

In my case, doctors misdiagnosed the reason for my seemingly unrelated symptoms for years. I was told it was anxiety or a panic disorder, then severe dehydration, until a well-versed physician saw me and figured out the cause. 

What causes POTS?

While the exact cause for POTS is unknown, many patients first experience episodes after the onset of a viral infection, hospitalization, or trauma. These signs can also come on more gradually for some individuals. 

“Many causes for POTS have been proposed, from simple dehydration to excessive sympathetic nerve stimulation, deconditioning, and autoimmune dysfunction,” says Adam Saltman, MD, Ph.D., the chief medical officer of Eko. “There is relatively little hard data, however, supporting any of them.” 

For me, my regular fainting spells and sudden dips in blood pressure persisted on and off for years, beginning in my early 20s. But after contracting COVID-19 last year, they became chronic. (Researchers at Johns Hopkins Medicine believe the virus can trigger POTS. Enough patients are presenting with the syndrome that a Johns Hopkins doctor started a POTS program to further investigate the link and treat the syndrome.)

RELATED: What we know about sequelae and lingering COVID-19 symptoms

Treating POTS

It’s important to remember that POTS is not a disease, but a syndrome, characterized by a set of associated symptoms. For this reason, treatment is primarily supportive and will not cure the condition. It involves lifestyle changes to treat the symptoms affecting the particular patient. Sometimes medications will be prescribed. Fortunately, nearly 90% of POTS patients respond to treatment. POTS is not life-threatening, and there is not evidence of reduced life expectancy.

“I’d recommend a change in diet, specifically drinking 2 to 2.5 liters of water each day and increasing your sodium intake to help expand blood volume, which helps with blood flow to the heart and brain,” says Suzanne Steinbaum, DO, an attending cardiologist and the director of Women’s Cardiovascular Prevention, Health, and Wellness at Mount Sinai Hospital. 

Because I was a younger patient, my cardiologist recommended that I incorporate cardiovascular exercise, carry SaltSticks (a chewable electrolyte supplement), and drink tomato juice when I feel dizzy. 

Unlike most people, I’m encouraged to eat foods high in sodium because it can keep my blood pressure up. Normally, the recommendation is to consume less than 2,300 mg daily to avoid causing hypertension. For people with POTS, 3,000 to 10,000 mg is ideal. 

“Medications like beta-blockers can [sometimes] be used, but there’s not one medication that can directly treat it,” says Dr. Steinbaum. Salt tablets, pyridostigmine, midodrine, fludrocortisone, and compression stockings are also sometimes prescribed. For me, a prescription isn’t part of my treatment plan.

RELATED: What is a beta blocker?

Living with POTS 

In the year since my POTS diagnosis, my quality of life has improved significantly. The condition is associated with depression and anxiety, likely because of the uncertain treatment path. One study found that 87% of adults with POTS showed signs of mild to moderate depression. For me, I felt like a weight was lifted. Receiving an explanation for my symptoms has allowed me to receive proper treatment. 

I now take better care of myself. I’ve had to change my daily life by exercising regularly and incorporating more resistance training into my workouts (which increases muscle mass). Before my diagnosis, I’d often skip meals when saddled with work or social obligations. Now, I eat small, frequent meals throughout the day and stay hydrated. 

I try to stay on top of my condition by keeping a portable blood pressure monitor on me for when I begin to feel nauseous or dizzy on the go. Often eating a salty snack—like nuts or olives—or sipping a sports drink will alleviate these symptoms.

Managing my mental health with mindful meditation and therapy has also helped when I’m not feeling great. According to Hoang P. Nguyen, MD, an interventional cardiologist in Orange County, California, since this is a comparatively newer diagnosis versus “cardiac conditions such as hypertension and coronary artery disease,” providers often misunderstand it. By learning everything I can about my condition, I’ve become a health advocate for myself. Now, I can make informed decisions about my care together with my healthcare provider—and hopefully I can help others, by sharing my story.