POTS reported in several with Long Covid but lack of awareness delays diagnosis, treatment

In July 2020, four months after Hyderabad-based journalist Padma Priya (now 36) contracted COVID-19, she fainted on her way to picking up vegetables within the gated colony she lives in.   

Initially, her doctors and family thought this was a one-off occurrence due to the usual fatigue that settles in after COVID-19. But the fainting episodes became frequent — up to nine times a week and continued till April 2021. 

Throughout, Priya’s blood pressure remained low and her heart rate high. Her resting heart rate was 110, according to an oximeter reading.

She consulted at least six doctors, most of whom attributed her symptoms to anxiety. A 2D echocardiogram also showed no cause for concern but Priya felt certain something grave was afoot.  

In August 2020, Priya stumbled upon some residents of the United States with similar symptoms on Survivor Corps, a social media support group that provides resources to Long Covid survivors. The members of the forum identified the condition as Postural Orthostatic Tachycardia Syndrome (POTS).

POTS is a dysfunction of the autonomic nervous system, indicated by an increase in heart rate and decrease in blood pressure while changing positions (sitting, lying down, standing up). This leads to dizziness and fainting and can sometimes be debilitating, leading to disability.   

Read more: After effects of COVID-19 pervasive in India, thousands living with new ailments

A tilt table test is used when a patient is strapped onto a table for 10 minutes while the table is titled at different angles, to monitor heart rate and blood pressure. A patient is said to have POTS if the heart rate increases by 30 beats per minute. 

Otherwise, some patients monitor their rate while sitting and standing up at home using various fitness technologies that display heart rate. Also called the NASA Lean Test, it is done at home when there is a lack of infrastructure.

“People in the group suggested I do a holter test. It showed my heart rate spiking up to 160 times in the range of 140-150 during the 24-hour monitoring period,” she recalled.

The doctor inquired if she had exercised that day, displaying the physician’s disbelief and unconcern, Priya said. “Sometimes, I couldn’t stand up and my heart rate would fluctuate. I would start profusely sweating and get tired easily after a short walk.”

In October 2020, after enquiring in journalism circles, Priya was referred to a cardiologist from Fortis Hospital in Mumbai who recommended an Internal Medical Specialist in Hyderabad, where she’s based. 

This physician suspected she had an adrenal gland tumor after running tests to check epinephrine and norepinephrine levels (key neurotransmitters that control blood pressure, heart and sugar through the body’s fight or flight response) and found that they were abnormally high. 

The suspicion was ruled out by a beta-human chorionic gonadotropin test — a blood or urine test that indicates cancer, she said. “They said my body was on overdrive, in fight or flight mode, and that I may also have POTS.”

This was the first time she received a formal diagnosis from a medical professional, four months after consulting various doctors. 

As is usually the case with POTS treatment, she was prescribed beta-blockers (medications that reduce blood pressure) as well as compression clothing that keeps the blood flowing to the upper part of the body and improves blood pressure. She described the outcome: 

I was fine for a few months, but fatigue and insomnia settled in again. I couldn’t work as it took me a long time to read and process information.

By March 2021, once again she was blacking out often after changing positions. I was falling face-flat on the ground, banging into walls, injuring my wrists and shoulders, she said. “There were times, I was not able to urinate without somebody by my side.” 

This time around, as things worsened, the doctor suggested she see a neurologist, who did a DOTA PET-CT scan used to test endocrine disorders. “They hypothesised that I may potentially have Parkinsonian syndrome, which was probably why I had problems with mobility." She added that this was only suspected, not confirmed.

To date, the neurologist has not figured out what caused these changes in the brain and attributed it to an autoimmune response connected to Long Covid. She said, "I was given steroids as my condition was terrible at this point."

Much later, another neurologist based in Kerala said she has damaged nerves in the right hand and leg, her dominant side. This indicates that she suffers from neuropathic POTS — dysregulated blood supply to the lower limb vessels, the doctor added.

Priya contracted COVID-19 from family members for the second time in April 2021. She landed in the ICU for 10 days fighting for her life, but survived. 

For the last year, her treatment comprised Midodrine, a drug used to treat unstable blood pressure, particularly while changing positions. 

She has now accepted she lives with a chronic illness and works in bursts of four hours a day. “My heart rate has entered the range of 100-120 as a tilt table test in Kochi confirmed. It was at 190 earlier when I was blacking out.”

General physician Dr Ashwin Rajenesh in Thiruvananthapuram, Kerala, said POTS is an uncommon consequence of viral infections such as chicken pox, herpes, infectious mononucleosis and lyme disease. “Since these infections are not occuring at pandemic rates, we don’t hear about it often. But with everyone being almost simultaneously affected by COVID-19, it’s become more noticeable.”

Little is known

Priya’s arduous two-year journey also highlights the global medical community’s unawareness about dysautonomia, a condition affecting 70 million worldwide. The autonomic system malfunctions in people with the condition and they have trouble regulating heart rate, blood pressure, pupil dilation, digestion, kidney function and temperature control, among other issues. 

Patients report lightheadedness, fainting, unstable blood pressure and abnormal heart rates. The condition, however, takes years to be diagnosed. 

The two most common forms of dysautonomia are vasovagal syncope and POTS, the latter more common at present after COVID-19. 

Read more: An engineer’s enduring struggle with Long Covid: ‘Various organs of my body were affected at random’

Rajenesh currently has 30-35 POTS patients. He was exposed to POTS back when he was training at Christian Medical College in Vellore. “POTS is not unfamiliar, but now there is an evident increase in patients.” 

In one instance, the head nurse at his private practice felt dizzy and experienced breathlessness and palpitations after taking 10 steps after COVID-19. “Her heart rate was 140 and she displayed clear symptoms of POTS.”

Several of his junior medical personnel also developed symptoms following a COVID-19 infection, majority of whom recovered after four to six weeks, he added. “Only a few of them have long-term complications like Padma Priya.” 

At this stage, it’s very difficult to say why some people don’t make a quick recovery from POTS, the doctor said. “A 360-degree evaluation needs to be done on them and I cannot say off hand.” 

According to Johns Hopkins Medicine, there are four primary types of POTS

• Neuropathic POTS: Due to nerve damage to the small fiber nerves, blood accumulates in the lower half of the body and not enough supply is sent back to the heart
• Hypovolemic POTS: Abnormally low blood supply to the heart
• Hyperadrenergic POTS: Accompanied by symptoms such as flushing and itching, due to increased secretion of the norepinephrine hormone from the adrenal gland
• Secondary POTS: Occurs as a result of another condition associated with autonomic neuropathy, such as diabetes, Lyme disease and autoimmune disorders

Several patients Down To Earth spoke to are always running between cardiologists and neurologists to fix their symptoms, but there is a general lack of clarity on who to approach for their treatment.

Most people don’t report conditions like POTS because they think they can deal with it on their own, said Dr Rajenesh. “So, there is not much research and data available too.”

Ideally, a general physician should be able to diagnose and treat a patient with POTS symptoms and refer them to a cardiologist or neurologist if further specialized evaluation is warranted, Rajenesh explained, adding:

In the MBBS syllabus, there is a very small mention of autonomic dysfunction and hence most general physicians aren’t aware of such in India. While most cardiologists tend to focus more upon coronary artery diseases or heart attacks, they prescribe the diagnostic titling test and neurologists are more able to discuss the pathology of the disease. 

Doctors must take on the onus and educate themselves and not leave patients to deal with it on their own, he added. 

As a result of Long Covid, several patient advocacy groups have come together, guiding people with dysautonomia towards relevant research and even doctors. One such support group is Body Politic COVID-19 based in the USA.

According to their survey that included 640 respondents with symptoms two weeks after their infection, 90 per cent did not make a full recovery 40 days after the onset. Many of the respondents had preexisting conditions like asthma which may have delayed their recovery.

A majority of them were women aged 30-50 who reported symptoms in line with autonomic disorders such as tachycardia, lightheadedness among others.

Similarly another patient advocacy group called Dysautonomia International is helping raise millions of dollars for research purposes, which will include POTS, a common form of dysautonomia. 

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