In 2019, Sourya, a 39-year-old ex-fauji was in the prime of his health. He was fit, worked out six times a week, and was on top of his career graph. Until COVID-19 hit him.
Sourya's brush with COVID wasn't particularly serious, but the remnants of the illness still haunt him every day. "Now my life is completely changed," he says.
He is one of the many people who developed a condition called Postural tachycardia syndrome (POTS) after recovering from COVID – a condition that causes severe fatigue, high heart rate, chest pain, dizziness, and blackouts.
For those living with the condition, respite has been slow to come by.
"I am maybe 30 to 40 percent better than what I was before (in 2021). But it’s still a long way to go," he tells FIT.
Why is treating POTS such a challenge? FIT speaks to experts to find out.
POTS Has Existed for Long...But Not Quite Like This
Speaking to FIT, Dr Sanjay Mittal, Director, Clinical and Preventive Cardiology, Heart Institute, Medanta Gurugram, says, "POTS is not a new thing. It's very common among women of menstruating age."
"Because of their hormone fluctuations they are vulnerable to having low blood pressure, and high heart rate. Even a small variability can dip their pressure as soon as they stand up from a lying down posture making them feel dizzy and faint."Dr Sanjay Mittal, Director, Clinical and Preventive Cardiology, Heart Institute, Medanta Gurugram
"...but it was a bit higher even in non-women after COVID-19," he adds.
"They are typically young adults, and they are by and large healthy people who didn’t have any heart issue before COVID," says Dr Aparna Jaswal, Director, Cardiac Pacing and Electrophysiology, Fortis Escorts Heart Institute, New Delhi.
Sometimes POTS can be triggered by severe infections and illnesses that take a toll on the body, be it bacterial, or viral, like say, COVID-19.
Three years into the pandemic and tonnes of research later, we now know that COVID does, in fact, damage the heart tissues and increase the risk of issues like myocarditis.
"Meaning, the COVID virus infected the myocardium, or the heart muscle. This came with several implications," says Dr Jaswal.
"Some people developed very low pulse rate, and some people came in with very high heart rate called tachycardia. And ofcourse we have been seeing that there may be some link between these infections and sudden cardiac deaths."Dr Aparna Jaswal, Director, Cardiac Pacing and Electrophysiology, Fortis Escorts Heart Institute, New Delhi
But the condition isn't well understood, and it's been an uphill battle for people like Sourya to so much as get a diagnosis, let alone the support and rehabilitation they need.
'They Didn’t Believe Me': Getting Medical Help Was the First Hurdle
Because symptoms of POTS can be vague and not easily detected in tests like ECGs, patients often have a hard time getting a proper diagnosis.
"I went to a number of doctors and they all said, it’s okay, just take rest. Because at that time not many were also aware of the extensive impact of COVID, and that these symptoms may be linked to COVID or the vaccine."Sourya Dash
Sourya says he then started doing his own research.
"This was not a normal situation. I noticed that when I was lying in bed my heart rate was completely normal at 68 - 70…when I take even one step, my heart rate hits 140 -145," he explains.
"It was only when I suggested to the cardiologist that could this be POTS that he agreed that yes, I think it is."
In fact, he says he himself researched the medication that could help and pushed his doctor to prescribe an anti-coagulant.
"My prescription also mentioned that on my patient’s insistence, I am prescribing this medicine."Sourya Dash
"Once I started taking them, the crippling fatigue that I was feeling improved, the dizziness was much lesser,"he says.
However, he admits this was a big personal risk he was taking. "You can’t be on anti-coagulants for a long period of time. There is a risk of internal bleeding, but at that time, I didn't see another choice."
"She (the doctor) wouldn't believe me when I was telling her that I could feel the tachicardia palpitations because all my tests came back normal. She thought that it was anxiety."DVL Padma Priya
But, Padma Priya says, she knew it wasn't just your run-of-the-mill anxiety because every time she changed postures she would black out.
"I would just be sitting and watching TV, and suddenly I'd be short of breath and my heart rate would spike as if I was running a marathon."
It took a lot of doctor-hopping before she found a doctor who would hear her out. "He said, let's run some more tests, and one of the tests revealed really high levels of adrenaline."
"My adreneline levels were so high that the diagnositc centre actually asked me if I was taking any performance enhancing drugs."DVL Padma Priya
The doctor then explained to me that maybe my body was stuck in a fight and flight mode because of the virus," she adds.
Explaining this further, Dr Mittal tells FIT, "High adrenalin drive is common in COVID - this can trigger sympathetic activity like high heart rate, and vulnerability to Postural related changes."
‘I Lost My Job'
Sourya talks about how the condition has altered all aspects of his life. In 2021 when POTS first hit him it was so debilitating that he had to quit his corporate job.
He's getting better now, but finding a job that would accommodate to his medical needs has been a challenge (even today, we only managed to catch him between job interviews).
“No work people come for any support,” he says.
"One organisation revoked my offer because I fell sick and I asked them if I can do 6 - 7 weeks of work from home, and I was selected for a director HR role."Sourya Das
“It’s been a struggle because I have been working for 14 years now and suddenly you dont have a job. But in the last year, since June, I have been trying to focus more on my health," he adds.
Building Communities Around Shared Struggles
As more and more people started talking about their own struggles with long COVID, support groups started mushrooming online. One such support group on Twitter and Telegram called Long COVID India was founded by Padma Priya.
These communities started serving as safe spaces for people struggling with the invisible wounds of COVID to share their experience, and find reassurance.
Sourya, who is a member of the group, says, "it has almost 400 to 500 people in the India group. I haven't yet seen anyone who has completely recovered to their pre-COVID health."
There Is Light at the End of the Tunnel
The good news, according to both Dr Mittal and Dr Jaswal, is that POTS is not a life-threatening condition. Dr Mittal goes on to say that "it is manageable once you diagnose."
"It is encouraging to see that it is not a permanent condition. We see it improving but improving over weeks to months."Dr Aparna Jaswal, Director, Cardiac Pacing and Electrophysiology, Fortis Escorts Heart Institute, New Delhi
However, recovery can be a slow and gruelling process.
There is no treatment for POTS as such, and the symptoms typically subside over time. This could be weeks, months or even years says Dr Jaswal.
According to the experts we spoke to, some lifestyle tweeks that can help control the condition include,
Keeping yourself well hydrated.
Doing mild to moderate exercise.
Contain the intake of caffeine, alcohol.
Sometimes treatments like beta blockers that control the heart beat may be required.
With COVID, we have been learning every day and there was no way of foreseeing how it would impact people.
"So, post COVID if you are experiencing any symptom that is untoward that you aren’t used to then it is worthwhile to consult a cardiologist," says Dr Jaswal.