POTS Diagnosis Offers Hope And Treatment For People With Long-Haul COVID-19 : Shots


    Jennifer Minhas had been a nurse for years when she contracted COVID-19 in 2020. Since then, lingering signs — what’s referred to as long-haul COVID-19 — made it unimaginable for her to work. For months, she and her docs struggled to grasp what was behind her fatigue and speedy heartbeat, amongst different signs.

    Tara Pixley for NPR

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    Tara Pixley for NPR

    Jennifer Minhas had been a nurse for years when she contracted COVID-19 in 2020. Since then, lingering signs — what’s referred to as long-haul COVID-19 — made it unimaginable for her to work. For months, she and her docs struggled to grasp what was behind her fatigue and speedy heartbeat, amongst different signs.

    Tara Pixley for NPR

    Within the months after she first received sick with COVID-19 in March 2020, Jennifer Minhas developed a cluster of mysterious symptoms.

    “I had profound fatigue,” she says, together with mind fog, complications and a speedy heartbeat, particularly when she modified positions from mendacity all the way down to standing up.

    “Simply standing as much as make a sandwich, my coronary heart fee can be 120,” remembers Minhas, a 54-year-old nurse who lives in San Diego. A standard heartbeat for an grownup ranges between 60 and 100 beats per minute.

    Medical doctors ordered exams to rule out coronary heart illness. All of them got here again regular. The docs could not discover something, Minhas says.

    About the identical time she developed one other unusual symptom that supplied a clue to her condition.

    “I’d get up in the course of the night time with burning palms and toes, and I’d look down and my toes can be shiny crimson,” Minhas says. As well as, she continued to really feel a tightness in her chest, and the mind fog was so intense at occasions, she says, she could not bear in mind a four-digit code for her telephone.

    Her signs turned so extreme that she stopped working. “Usually I am very energetic. I used to play tennis and go to the fitness center,” she says. However all this exercise got here to a halt.

    But docs couldn’t clarify what was fallacious. At first, her major care physician thought it was nervousness.

    “It was disconcerting,” Minhas says, and “lingering method too lengthy with no correct reply.” However she persevered, decided to “dig in and search for solutions.”

    And months later, in late 2020, a breakthrough: A bunch of cardiologists on the College of California, San Diego helped lead her to a prognosis of a mercurial and little-known situation: postural orthostatic tachycardia syndrome, or POTS, a blood circulation disorder.

    A rising variety of individuals are dealing with mountains of frustration over well being issues that linger after COVID-19 with no clear path to enchancment. However for a subset of individuals with what’s referred to as “lengthy COVID” — principally ladies resembling Minhas — a POTS prognosis affords a highway map to remedy choices and reduction from their often-debilitating signs.

    COVID-19 brings new circumstances, new consciousness

    The docs instructed Minhas that they’d begun to see different sufferers after COVID-19 who had developed related signs. They defined to her that a difficulty together with her nervous system was inflicting her coronary heart to race, normally upon standing — a signature characteristic of the syndrome — and the circulatory issues.

    POTS is a kind of dysautonomia, which stems from dysfunction within the autonomic nervous system. That is the a part of the nervous system that works robotically to control physique features resembling respiration, coronary heart fee, blood strain and digestion.

    Do not be shocked in case you’ve by no means heard of POTS. “There’s been a lack of knowledge” of the situation, even inside the medical neighborhood, says Dr. Tae Chung, a POTS specialist at Johns Hopkins Medication in Baltimore.

    The syndrome is estimated to have an effect on about 1 million to three million individuals within the U.S. — mostly ladies, younger adults and adolescents. However the COVID-19 pandemic has introduced new consideration and plenty of new recognized circumstances.


    Absolute numbers of long-haulers aren’t identified, however a current survey within the U.Ok. discovered about 13% of people that had COVID-19 continued to have symptoms three months after their preliminary an infection. Specialists say a small slice of individuals with long-haul COVID-19 have signs of dysautonomia, although its prevalence is unknown.

    What is thought, although, is that there’s a backlog of sufferers ready to be seen, Chung says. As a part of the Johns Hopkins Post-Acute COVID-19 clinic team, he sees many sufferers who’ve POTS-like signs that should be evaluated, although not all might be recognized with the situation.

    POTS consultants at different tutorial medical facilities — together with UC San Diego, the place Minhas is being handled — are also reporting an uptick in circumstances.

    Lengthy highway to prognosis

    POTS predates the pandemic. It was first named within the Nineties, although it existed – unrecognized – lengthy earlier than, consultants say. POTS typically comes on immediately following viral an infection, although there are additionally different triggers, resembling a concussion, for example.

    The encouraging information is there are a bunch of medicines and bodily remedy that may assist. “Many sufferers do get higher, considerably higher,” says Dr. Pam Taub, a heart specialist who treats Minhas at UC San Diego.

    However in lots of circumstances, POTS is a power situation, says Dr. Mitch Miglis, an autonomic dysfunction specialist at Stanford College, and sufferers require ongoing care. Signs can wax and wane over time, however he agrees that “most individuals get higher with remedy.”

    POTS has overlapping options with power fatigue syndrome, together with fatigue and mind fog, and consultants who deal with it say POTS has had among the identical challenges as CFS in gaining recognition. However this has begun to vary as researchers “have proven that there’s actual biology behind POTS,” Taub says.

    Nonetheless, even earlier than COVID-19, there have been typically lengthy delays between the onset of signs and getting a prognosis. Many sufferers see 5 or extra docs earlier than they’re recognized.

    “Although 90% of individuals with POTS are females, males truly get recognized with POTS a median two years faster than females,” says Lauren Stiles, who was recognized with POTS in her early 30s and is the co-founder and president of Dysautonomia International, a nonprofit affected person advocacy and analysis group.

    “Younger ladies complaining about a number of signs are sometimes instructed ‘it is all in your head’ earlier than an autonomic nerve dysfunction like POTS would even be thought of,” Stiles says.

    The connection between COVID-19 and POTS

    A number one concept for why COVID-19 long-haulers develop the syndrome is that “the antibodies produced after COVID might assault the autonomic nervous system,” says Taub, the UC San Diego heart specialist.

    Chung at Johns Hopkins agrees that the onset of POTS following COVID-19 is probably going “autoimmune” in nature. “The immune system is confused,” he says, inflicting the misdirected assaults.

    In consequence, the power of the autonomic nervous system to control blood circulate is broken. In POTS sufferers, the nerve that regulates blood circulate is not working, Chung says, and never sufficient blood circulates to the mind. That accounts for the mind fog amongst POTS sufferers. And train is hard, too, as a result of “train requires plenty of blood circulate to the muscle,” he explains.

    Chung makes use of a mix of exams and symptom historical past to diagnose POTS, together with a tilt-table test. Sufferers are secured to the desk and go from mendacity to standing up as the top of the desk is raised. If a affected person’s coronary heart fee jumps considerably when the desk goes up and the signs are reproduced with that motion, that is a robust indicator of POTS, Chung says.

    One other diagnostic check is a cutaneous nerve biopsy to have a look at the small fiber nerve within the pores and skin — which makes up the autonomic nervous system — to search for nerve harm.

    Medicine, bodily remedy, weight-reduction plan can all deliver reduction

    After a POTS prognosis, there are a number of remedy routes. Physicians can prescribe varied medicines to deal with signs, and there is some new proof {that a} drug referred to as ivabradine will help decrease coronary heart fee.

    A small double-blinded, placebo-controlled research revealed this yr within the Journal of the American College of Cardiology discovered ivabradine considerably lowered the guts fee of sufferers, together with 22 individuals with POTS.

    The drug has helped Minhas, the nurse in San Diego, though she pays for it out of pocket as a result of her insurance coverage firm denied protection.

    “Inside a few days, I began feeling higher,” she says. “I used to be in a position to arise with out feeling a racing coronary heart. I used to be in a position to do extra exercise.”

    Minhas, together with her 8-month-old pet Murphy, says she felt reduction after getting recognized with POTS, a blood circulation dysfunction, and her well being is enhancing slowly with remedy.

    Tara Pixley for NPR

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    Tara Pixley for NPR

    Minhas, together with her 8-month-old pet Murphy, says she felt reduction after getting recognized with POTS, a blood circulation dysfunction, and her well being is enhancing slowly with remedy.

    Tara Pixley for NPR

    Sufferers can use ivabradine as “a bridge,” explains Taub, who’s the writer of the JACC research and has been a marketing consultant to Amgen, a pharmaceutical firm that makes the drug.

    Some sufferers are so disabled by POTS that it is exhausting for them even to face up. However ivabradine allows them to begin shifting aground once more, Taub says. As soon as their train tolerance improves, “they now not have to depend on the drug,” she says.

    Chung says he prescribes ivabradine to some sufferers, but it surely’s not proper for everybody, since it might exacerbate fatigue, lightheadedness or different typical POTS signs. The identical goes for beta blockers, one other class of medication that additionally lowers coronary heart fee, he says.

    Other medicines can help, relying on which signs are current. For example, analysis exhibits that POTS sufferers are likely to have a decrease than regular degree of plasma and crimson blood cells. Sufferers with these signs may profit from fludrocortisone, which helps to increase blood quantity. Mestinon will help stop will increase in coronary heart fee and enhance signs, too.

    On condition that POTS is a syndrome with a spread of signs, Stanford’s Miglis says he chooses medicines which are tailor-made to every affected person. “Some sufferers with mind fog profit from stimulant remedy, for example,” he says.

    One other really useful remedy for POTS sufferers is to drink numerous fluids.

    “I’m as much as consuming a gallon of water a day,” says Michaelene Carlton, 47, who was just lately recognized with POTS by Chung. The additional water helps to increase the quantity of plasma, which will help tamp down signs. Further salt is really useful, too, since it might probably assist the physique retain fluids.

    Earlier than her COVID-19 an infection a few yr in the past, Carlton, who lives in Magnolia, Del., was energetic. She practiced yoga 4 to 5 occasions per week and ran 15 to twenty miles per week.

    However now, she’s now on long-term incapacity and has stopped working as a center faculty paraeducator, a job she says she beloved. She spends a lot of the day in mattress or on the couch, as a result of the fatigue, complications and lightheadedness have been so intense. “It is gradual going,” Carlton says.

    She has begun bodily remedy to regain energy and muscle mass, particularly in her core and legs. The PT routine emphasizes flooring workout routines and energy coaching to keep away from sudden positional adjustments which will exacerbate her signs. She’s additionally pedaling on a recumbent bike to regain some cardio capability. “Little by little” is her motto, she says.

    Carlton can also be making an attempt a brand new weight-reduction plan that emphasizes fruits, greens and proteins, together with lean meats. She has reduce out refined grains and sugar. Her strategy suits with some preliminary analysis from Vanderbilt College that discovered POTS symptoms get worse after meals wealthy in carbohydrates.

    That analysis means that “eating small meals throughout the day, and following a low-carb weight-reduction plan, low in refined-grains and sweets might be helpful, as a complementary strategy,” says Dr. Cyndya Shibao, a researcher at Vanderbilt College Medical Heart.

    It has been identified amongst POTS sufferers that consuming high-carb meals could make you are feeling worse, says Stiles of Dysautonomia Worldwide. She says that is an instance of how individuals within the POTS neighborhood “advise one another” and share info.

    As for Minhas, she says pinning down a prognosis has made her extra optimistic.

    “I undoubtedly felt a way of reduction,” she says, “one way or the other we might clarify what was occurring.” And as she slowly improves, she has turn into concerned in efforts to boost consciousness in regards to the situation, and the necessity for analysis to grasp higher all the post-COVID-19 sicknesses.

    The Nationwide Institutes of Well being just lately introduced a $1.15 billion investment to check long-haul COVID-19. NIH Director Francis Collins says the goal is to “determine the causes of lengthy COVID, to develop methods of treating people who do not absolutely recuperate, and, in the end, to stop the dysfunction.”

    Advocates within the POTS neighborhood resembling Stiles say that given the numerous variety of circumstances associated to COVID-19, it is important that a few of these analysis {dollars} be devoted to understanding autonomic issues.

    “Hundreds of thousands of long-haulers and other people residing with different types of post-viral dysautonomia are relying on the analysis neighborhood to determine this out to allow them to get again to residing their lives,” Stiles says.

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