I Had POTS Syndrome But Was Misdiagnosed With Anxiety
My racing heart, exhaustion, nausea, chest pain, and salt cravings turned out to be symptoms of postural orthostatic tachycardia syndrome, a condition that most often occurs in young women.
Backpacking, running marathons, CrossFit, dancing, even circus arts classes: I’ve always enjoyed a very active lifestyle. Well, at least I did at sea level.
In 2015, my family and I moved to the mountains of Colorado and while I was prepared to feel some effects from the increased elevation (they don’t call Denver the “mile high city” for nothing), I was shocked at how difficult it felt to even run around the block. People told me that my body would adjust within a month and I’d be back to my usual activities.
It didn’t happen. A year later, my problems had actually gotten worse, to the point where doing even routine things, like laundry, felt incredibly difficult and painful. In 2016, I forced myself to run the Bolder Boulder 10K with friends but even though I finished, I got my slowest time ever and I was in such bad shape afterwards I had to lie down for two days straight.
My chest ached, my whole body felt weak, I was exhausted, and every time I tried to stand up my heart would race so much I thought I was having a panic attack.
My husband was incredibly worried but I stubbornly insisted that I just needed to work harder to increase my cardio capacity.
A doctor dismissed my symptoms
My breaking point came during a Zumba class. At sea level, dancing was something I did for fun and for recovery but never really considered much of a workout. In Colorado, it was all I could do just to finish the class. On that fateful day I just couldn’t do it.
Halfway through the class I was overwhelmed with a feeling of nausea and light-headedness. Positive that I was going to faint, I sat down on the floor and put my head between my knees. My chest ached and my heart was pounding. It took an hour for the room to stop spinning and even then I couldn’t stand up and had to call my husband from work to pick me up.
I was humiliated and more than a little scared. I was only in my 30s and while I’d never been an athlete, I’d always had a fairly high fitness level. And now I couldn’t even finish a single dance class? What on Earth was happening to me?
The chest pain was the most obvious symptom so I made an appointment with my primary care doctor who referred me to a cardiologist. The first one I saw dismissed me as having anxiety and recommended I see a therapist.
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I was shocked he wouldn’t take me seriously; I knew myself well enough to know this wasn’t anxiety. Sure, I was worried but the worry came after the symptoms.
The second doctor ran many tests and even though they came back normal, he suggested I probably had a common congenital heart defect. He recommended correcting it through open heart surgery. That was a completely different kind of shock. Before I committed to such a life-altering surgery, I wanted a third opinion.
This time I chose a female cardiologist. After taking time to really listen to all my symptoms and how they had progressed, she suggested something none of the other doctors or specialists had brought up: postural orthostatic tachycardia syndrome (POTS).
I remember her explaining that while everyone’s heart races sometimes and everyone occasionally gets a little dizzy standing up, experiencing these things on a regular basis is not normal. She said that it may indicate POTS, a fairly common yet relatively unknown syndrome that mostly affects young women. Her diagnosis would both change and save my life.
What is POTS syndrome?
Patients often report it as a heart or neurological problem but POTS is actually a disorder of the autonomic nervous system, the part of the body that regulates necessary-to-life systems like blood pressure, heart rate, breathing, digestion, urination, and even sexual arousal.
Most of the time you don’t even notice that it’s working, until something goes wrong. And when it goes wrong it can go very wrong, making even the most basic activities feel excruciating.
POTS is a collection of symptoms, marked by excessive tachycardia, related to “orthostatic intolerance” upon standing, according to Dysautonomia International. That’s medical jargon for saying that my heart races uncontrollably whenever I stand up. Yes, standing was my problem.
Every time you stand up, about 1/2 liter of blood is pulled downward by gravity, pooling in your lower extremities. Normally, your body compensates quickly for this by adjusting your heart rate, blood pressure, and veins but in people with POTS, something goes wrong with the process, says says Hugh Parker, cardiologist with UCHealth Heart and Vascular Center and assistant professor of cardiology at the University of Colorado School of Medicine.
The muscles and veins don’t move the pooling blood effectively, which reduces blood flow to the heart. This can cause the heart to beat rapidly as it tries to compensate, he says.
That may not sound like a big deal but as someone who deals with this, let me tell you that it feels absolutely horrible. The rapid heart rate can cause a cascade of other symptoms and eventually the only way to feel OK is to lie flat down and stay there.
Causes of POTS syndrome
POTS can strike people of any age, gender, or race, but it is most often found in women between 15 and 50 years old. Men and boys can and do get it as well, but approximately 80 percent of patients are female.
Most cases of POTS are “idiopathic,” meaning that it’s unknown what causes it, says Jeffrey Mossler, cardiologist and heart rhythm specialist with Indiana University Health. Sometimes it appears to be triggered by pregnancy, a virus, or a pre-existing health condition like diabetes. But there isn’t a lot known about exactly why and how it happens, which can be incredibly frustrating for both patients and their doctors, he says.
My case appears to be triggered by the change in altitude from my move across the country. While there’s no research to support my theory, Mossler says that’s not the first time he’s heard a patient report that being at a high altitude caused POTS problems — something my Denver-based doctor also has confirmed.
POTS is a syndrome, not a disease, which means it’s a collection of symptoms that seem to be related to the same cause. The primary symptom of POTS, and the one used to diagnose it, is a rapid increase in heart rate upon standing. However, because POTS isn’t just a cardiovascular issue and stems from dysautonomia, you may experience a wide variety of painful, disabling, and often confusing symptoms, Mossler says.
In addition to tachycardia, symptoms of POTS may include nausea, dizziness upon standing, mental fog, exhaustion, exercise intolerance, heat intolerance, purple or swollen hands and feet, chest pain, headaches, shortness of breath, stomach pain, anxiety, and cravings for pickle juice (we’ll come back to this one in a minute).
Because the symptoms are so varied, differ from person to person, and mimic many other conditions, POTS is one of the most misdiagnosed and underdiagnosed health conditions, Mossler says.
Another factor may be that it mainly affects young women and they are more likely to have symptoms that are dismissed or ignored by medical providers. The symptoms can range in severity from mild flares several times a year to being completely disabling, Parker says.
“The medical community has known about POTS since the 1930s yet to this day there’s a certain bias that because it primarily affects young women it’s just hysterical females,” Mossler says. “But it’s not psychological and it has a real physiological cause.”
Anecdotally, I’m not the only woman with POTS I know who had to seek out multiple doctors and was told I could cure it with therapy and mindfulness.
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Unlike many syndromes, there is a diagnostic test for POTS, called a “tilt table test,” says Sanjiv Patel, interventional cardiologist at MemorialCare Heart & Vascular Institute at Orange Coast Medical Center in Fountain Valley, California.
This involves strapping the patient to a special table that is reclined for several minutes and then raised upright. This method keeps the patient’s leg muscles from becoming involved, which can skew the results, he says.
To be diagnosed with POTS, you must experience an increase of 30 beats per minute or more, or have your heart rate go over 120, after going from a prone position to an upright one.
Once the heart rate is elevated, it should stay high for at least five minutes and often longer. You can do a “poor man’s tilt table” at home by using a heart monitor to take your own readings as you change positions. However, a formal tilt table test is recommended for the most accurate diagnosis Patel says.
“It’s not high-tech but it works; I’m often surprised by how quickly we can reproduce symptoms using the tilt table,” Parker adds.
This is how it worked for me. After being raised upright, I was immediately overcome by that all-too-familiar feeling of intense nausea and a conviction that I was going to faint. I went pale and broke out in a cold, clammy sweat while yelling at everyone that I needed a garbage can to puke in. Oh, and my heart was racing, going from 59 BPM lying down to 110 and then 135 BPM upright.
I did not end up vomiting or fainting, thankfully, but I did end up with a diagnosis of POTS.
If all your symptoms point to POTS, your doctor may stop with that and try treating it as such, Parker says. However, if you have additional symptoms, including actual fainting or a drop in blood pressure, those may indicate a more severe form of dysautonomia or another underlying condition and your doctor will order more tests, he says.
There is no cure for POTS but there are several ways to treat the symptoms, including eating a high-salt diet, lifestyle changes, and medication, Mossler says.
“The first-line treatment for POTS is aggressive hydration and salt loading,” Parker says. “This causes the body to retain fluid, which increases blood pressure.” While the blood pressure isn’t the primary issue, raising it can give your body a little more “wiggle room” when it comes to the amount of blood pooling and the effects, he says.
Oftentimes people with POTS will have intense salt cravings, as the body tries to do this itself, Parker says. “I’ve had many patients who will confess to drinking pickle juice or licking straight salt off their hand and they are ashamed of it, as they think it’s not healthy,” he says. “But that’s your body telling you what it needs.
For me, it was drinking the juice from a jar of kalamata olives. I craved it so much I’d buy multiple jars a week, only drinking the liquid and discarding the olives, much to the annoyance of my family. I would totally drink pickle juice straight from the jar if that’s all there was.
When I was first diagnosed, before it had even been confirmed, my doctor suggested I take salt pills several times a day while drastically increasing my water intake.
For the curious, I eat four to five tablespoons of salt and drink over a gallon of water per day. (Don’t try this at home. You should talk to your doctor about the amount that is right for you as it is not a one-size-fits-all prescription.)
I was astonished at what a huge difference it made. Almost immediately my workouts improved and after three years, I was finally able to nearly return to my old fitness level. In fact, it’s worked so well that I haven’t needed any further treatment.
I have occasional flare-ups that land me back in bed, usually when I push myself too hard in the heat and sweat a lot without drinking enough, but for the most part my symptoms are gone. My “heart condition” that I almost treated with extreme surgery was cured by a $10 bottle of salt pills and a Hydroflask water bottle.
Other lifestyle adjustments include wearing compression stockings or leggings to prevent blood pooling and getting daily exercise, both cardio and strengthening the lower body muscles, Parker says.
Exercise intolerance is one of the primary symptoms of POTS so it makes sense that patients wouldn’t want to do it. But that means they can become deconditioned very quickly which makes their symptoms worse, turning into a vicious cycle, Mossler says.
“Even though it may feel harder for you to exercise, it’s even more important to do it regularly,” Mossler says. He suggests starting with a recumbent bike if standing up brings on too many symptoms. Many people have had great success by following the POTS Exercise Protocol.
For me, daily exercise has been a major component of managing my symptoms. The salt and water made it so I could exercise again but if I miss even one or two days, I start to feel ill again. I’ve found that it doesn’t have to be much — even a walk to the park with my kids is enough — it just has to be consistent. Lifting weights to strengthen my leg muscles has also helped reduce blood pooling.
Taking care of yourself is also a key component of POTS treatment. Make self-care a priority by getting adequate sleep, eating a healthy diet, treating underlying health conditions, reducing stress, not pushing past your limits, and never allowing yourself to get dehydrated, Parker says.
Not everyone is as responsive to the salt-and-water treatment as I am. The next step is to try medication, Parker says. Fludrocortisone is a hormone that causes your body to retain water or your doctor may order beta blockers, a type of blood pressure medication that blocks adrenaline so your heart can’t race.
“These are never my first choice because they do come with side effects but in people that need them they can be very effective,” he says.
There is hope
POTS isn’t curable but it’s very treatable. “Some people grow out of the condition on their own while others will deal with it for the rest of their life,” Parker says. “In the meantime, it’s important to have patience with yourself and your medical team as you figure it out.”
I’ve made it my personal mission to share my story with other women. Even after having been diagnosed, I still hardly ever hear about the syndrome yet many friends have experienced similar symptoms. The first step to feeling better is knowing what’s causing the problem in the first place and we can’t do that without more and better information.
“This is a situation where you may have to really advocate for yourself,” Mossler says. “Take your symptoms seriously and find a doctor who does, too.”