Doctors Couldn’t Explain My Racing Heart and Brain Fog Until I Investigated on My Own

The first clear sign that something was seriously wrong came in 2018, when my then-fiancé and I went on a hike. I had been a college track athlete and had even climbed the Alps before, but that day I couldn’t make it up a small hill without getting winded and needing to stop.

For several years before that, I had been dealing with brain fog and digestive problems, including both diarrhea and constipation. The symptoms would flare up and then ease off, so I kept going with my life. I also noticed that my heart would sometimes suddenly race for no obvious reason.

That year, everything worsened quickly. I was working as a physical therapist four days a week, and the job left me drained. On my days off, I slept nearly all day. I began to worry that something was wrong with my brain because I was so foggy I slurred my words and would forget what I was saying halfway through a sentence.

What was most frustrating was that every doctor I saw told me nothing was wrong. Along with my primary care doctor, I visited a neurologist and a cardiologist, but after normal test results, they all reassured me that I was fine.

I knew something was off, and I realized I would have to solve it myself.

My Heart Was Off to the Races

One major clue was that my heart would race at the strangest times, even when I wasn’t doing anything especially strenuous. My fiancé suggested I wear a heart rate monitor to look for a pattern.

That gave me an immediate clue: when I stood up to wash dishes, my heart rate shot up. I started researching online and found postural orthostatic tachycardia syndrome, or POTS, a condition that affects blood flow and can cause a racing heartbeat when standing. It can even lead to fainting. As I kept reading, I learned that brain fog is also a common symptom.

I live in Montana, and finding a doctor who knew about POTS was not easy. Even though I was in my 20s, I ended up seeing a pediatric cardiologist, who diagnosed me with POTS based on my symptoms. I started medication to raise my blood pressure and increased my salt and fluid intake.

Those steps helped somewhat, but I still didn’t feel normal. I did more research and learned about clinical trials at Vanderbilt University’s Autonomic Dysfunction Center. There, the first test they performed was a tilt table test. They attached electrodes, put a blood pressure cuff on me, and had me lie flat. After about 20 minutes, they tilted the table almost upright. Within minutes, I fainted. My heart rate had risen by 30 beats per minute, which officially confirmed the POTS diagnosis.

A Double Diagnosis in the Family

After I was diagnosed, I told my mom about everything I had been experiencing, and she said, “That sounds a lot like what I’ve gone through!” She explained that as a teenager she would faint for no reason, and when she went on bike rides, she often had to stop and sit down because she felt close to passing out.

As she got older, her heart would race without warning, and then she would feel exhausted for the next couple of weeks. Back then, a doctor told her she might have mitral valve prolapse and referred her to a cardiologist, but that specialist said her heart looked completely healthy. She had gone all those years without answers, too.

After hearing my story, my mom found a POTS specialist at Johns Hopkins in Baltimore, near where she lived. She had the tilt table test as well and was also diagnosed with POTS.

Getting Better, But Still Dealing With Challenges

In addition to taking a beta blocker to control my heart rate and changing my diet, I followed the Levine Protocol, an exercise plan designed specifically for POTS. It begins with exercises done while lying down, usually on a recumbent bike or rowing machine, then moves to sitting exercises, and eventually to standing ones.

The treatment was demanding, and I had to take medical leave from work, but it did help. I was able to hike again and put a lot of energy into building a new house after I got married. My mom increased her salt and fluid intake, wears compression stockings and an abdominal binder, and she is doing better too.

Things became more complicated later when I learned I also have mast cell activation syndrome, or MCAS, and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. It is not unusual for these conditions to occur alongside POTS.

In January, my doctor started me on H1 and H2 blockers, which have helped both my MCAS and my POTS. I still take electrolytes, stay hydrated, and wear compression stockings. Those measures have really helped bring my POTS under control. For the chronic fatigue, I am very careful about pacing myself and take low-dose naltrexone.

One reason it took so long for both my mom and me to get diagnosed is that POTS does not usually look like an obvious illness. The standard tests often come back normal. You have to keep advocating for yourself and find a specialist who understands the condition. That made all the difference for both of us.

What is POTS?

An estimated 3 million Americans have postural orthostatic tachycardia syndrome, or POTS, and research has found a strong connection with long COVID, with more than 60% of long COVID patients in one study experiencing POTS symptoms.

“POTS mainly affects young women of reproductive age,” says Cyndya Shibao, M.D., an associate professor of medicine and POTS specialist at the Vanderbilt Autonomic Dysfunction Center. In the condition, blood pools in the abdomen instead of circulating properly to the heart and brain when a person stands up. It often develops after an infection such as COVID, though in some cases there may be a genetic cause. “There is still not a lot of awareness about POTS, so a lot of young women go to the doctor saying their heart is racing, but the tests come back normal, so it gets misdiagnosed as anxiety,” Dr. Shibao adds.

Although POTS has different forms, they all involve the heart rate increasing by about 30 beats per minute after standing from a sitting or lying position.

Other symptoms may include:

• • Severe fatigue
• • Light-headedness and fainting when standing for a long time
• Brain fog
• Bloating, diarrhea, and/or constipation
• Headaches and neck pain
• Heart palpitations
• Nausea and vomiting

Read more medical mystery and misdiagnosis stories like this one in our column, My Diagnosis, which highlights real-life health struggles and paths to wellness. Have a story to share? Write to [email protected].