Latest news with #PoTS
Miami Herald
11-05-2025
- Health
- Miami Herald
Managing PoTS: Tips for Living with the Chronic Illness Affecting Millions
Imagine standing up and your heart suddenly races as if you've sprinted a mile-except you haven't budged. For millions of Americans with Postural Orthostatic Tachycardia Syndrome (PoTS), this dizzying, exhausting reality is their daily norm. Though not fatal, PoTS profoundly disrupts everyday life, causing a spectrum of symptoms-dizziness, near‑fainting, brain fog, palpitations, fatigue, tremors, chest discomfort, headaches, nausea and gastrointestinal distress. Recent data suggest PoTS is on the rise. "PoTS can be triggered by SARS‑CoV‑2 infection as part of long COVID," said Dr. Svetlana Blitshteyn, professor of neurology at the University at Buffalo. A 2025 study in The American Journal of Medicine found that nearly 80 percent of long‑COVID patients met the diagnostic criteria for PoTS. "Prior to the pandemic, at least 3 to 5 million people had PoTS, which has likely doubled after the pandemic," Blitshteyn told Newsweek. "We still don't know exactly how many Americans currently have PoTS, but it is estimated that millions more Americans are now suffering from this disease," added Dr. Brit Adler, a professor of medicine in the division of rheumatology at Johns Hopkins University. PoTS is described as an abnormality in the functioning of the autonomic nervous system, the system controlling breathing, gut function, heart rate, blood pressure and many other bodily functions. It can also be linked to problems like "low blood volume, vascular dysfunction, or other mechanisms," Adler said, adding that those with hypermobility syndromes like Ehlers-Danlos Syndrome often had the condition as well. PoTS comes as a result of the autonomic nervous system's "adjustment to being upright not functioning properly," Professor Lesley Kavi, the chairperson of the U.K.-based charity organization PoTS UK, told Newsweek. As many basic tasks in the day require postural changes and standing, a person with PoTS is constantly being put under strain as they navigate simple tasks. Symptoms tend to lessen when a patient is horizontal, but it can sometimes take a long time for symptoms to ease off once flared. Things like heat, prolonged standing, dehydration, stress, intensive exercise, viruses, infections, and menstruation can all worsen PoTS symptoms. Kavi said that major surgery, injuries such as concussion, and exposure to a traumatic event can trigger an onset of PoTS, but she added that there isn't enough data and research yet to be able to determine precisely what mechanisms are going wrong within the body. Dr. Zachary Spiritos, a specialist in gastroenterology and hepatology at North Carolina's UNC Health, told Newsweek: "Many people may be born with a vulnerability, and then something in the environment - often an infection or injury - triggers the onset of symptoms. It's multifactorial, and the exact blend is different for everyone." Prevalence estimates range widely: the Cleveland Clinic cites 1–3 million U.S. cases, while Dysautonomia International reports 3–6 million. This variability stems largely from under-recognition-most clinicians seldom consider PoTS during evaluation, according to Spiritos. Women account for approximately 80 percent of cases in the U.S., according to Dysautonomia International, likely due to hormonal influences and autoimmune predisposition. "This is partly because the X chromosome carries many immune-related genes, and women have two copies, which can lead to more robust, but also more error-prone, immune responses," Spiritos said, "[And] we see anecdotal patterns where estrogen can worsen PoTS symptoms, while testosterone may be protective." Lesley Kavi from PoTS UK said that avoiding symptom triggers can be a good place to start for managing the condition, although this is very individual. For some, this could include avoiding prolonged standing, dehydrating things like the heat, alcohol, and caffeine, she added. Increasing fluid intake is essential, Kavi said, adding an adult with PoTS should aim to drink between two to three liters of water a day, or more if they exercise or are in a hot environment. In order to ensure the water stays in your system, increasing sodium intake is also important, Kavi said. Patients are advised to increase their sodium intake to as much as 10,000-12,000 mg per day, but each patient will respond best to a different amount. Compression clothing, particularly tights or leggings that cover the abdomen, are helpful in boosting blood circulation too, Kavi said. Typically medical grade compression is required of between 20 to 30 mmHg. "Exercise can be something that helps the most for some people, but the problem with exercise is that it can make others feel really terrible afterwards, even for a day or two," Kavi added. Starting "low and slow" is always the way to go, Kavi said, adding that it was important to get expert input. The best forms of exercise to start with are horizontal, she added, pointing to exercise bikes, Pilates, rowing machines, and swimming. Although, it is always best to get professional support, Blitshteyn said. "While there are no cures, there is treatment to help you improve and function better in your life." It is also important to remember "you're not alone and PoTS is a real, physiologic disorder," Adler said. "Many people go years without a diagnosis and are often told that their symptoms are from anxiety and it is in their head." Spiritos said it's a good idea to educate yourself, as "understanding the condition is empowering," and recommended listening to the POTScast and Bendy Bodies podcasts. "Ultimately, community and knowledge are power, and with the right tools, you can get better," he added. Related Articles What to Eat When You're Living With Long COVIDHow This Simple Routine Could Improve Immune Function Over TimeWoman Struggles With Dangerous Heart Condition-Then Dog Changes EverythingMillennial Woman With Stoma Who Refuses To Stop Wearing a Bikini Applauded 2025 NEWSWEEK DIGITAL LLC.
Newsweek
11-05-2025
- Health
- Newsweek
Managing PoTS: Tips for Living with the Chronic Illness Affecting Millions
Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources. Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content. Imagine standing up and your heart suddenly races as if you've sprinted a mile—except you haven't budged. For millions of Americans with Postural Orthostatic Tachycardia Syndrome (PoTS), this dizzying, exhausting reality is their daily norm. Though not fatal, PoTS profoundly disrupts everyday life, causing a spectrum of symptoms—dizziness, near‑fainting, brain fog, palpitations, fatigue, tremors, chest discomfort, headaches, nausea and gastrointestinal distress. Recent data suggest PoTS is on the rise. "PoTS can be triggered by SARS‑CoV‑2 infection as part of long COVID," said Dr. Svetlana Blitshteyn, professor of neurology at the University at Buffalo. A 2025 study in The American Journal of Medicine found that nearly 80 percent of long‑COVID patients met the diagnostic criteria for PoTS. "Prior to the pandemic, at least 3 to 5 million people had PoTS, which has likely doubled after the pandemic," Blitshteyn told Newsweek. "We still don't know exactly how many Americans currently have PoTS, but it is estimated that millions more Americans are now suffering from this disease," added Dr. Brit Adler, a professor of medicine in the division of rheumatology at Johns Hopkins University. File photo: a doctor checks a patient's heart rate and blood pressure in a clinic. File photo: a doctor checks a patient's heart rate and blood pressure in a clinic. Klaus Rose/dpa via AP What Is PoTS? PoTS is described as an abnormality in the functioning of the autonomic nervous system, the system controlling breathing, gut function, heart rate, blood pressure and many other bodily functions. It can also be linked to problems like "low blood volume, vascular dysfunction, or other mechanisms," Adler said, adding that those with hypermobility syndromes like Ehlers-Danlos Syndrome often had the condition as well. PoTS comes as a result of the autonomic nervous system's "adjustment to being upright not functioning properly," Professor Lesley Kavi, the chairperson of the U.K.-based charity organization PoTS UK, told Newsweek. As many basic tasks in the day require postural changes and standing, a person with PoTS is constantly being put under strain as they navigate simple tasks. Symptoms tend to lessen when a patient is horizontal, but it can sometimes take a long time for symptoms to ease off once flared. Things like heat, prolonged standing, dehydration, stress, intensive exercise, viruses, infections, and menstruation can all worsen PoTS symptoms. Kavi said that major surgery, injuries such as concussion, and exposure to a traumatic event can trigger an onset of PoTS, but she added that there isn't enough data and research yet to be able to determine precisely what mechanisms are going wrong within the body. Dr. Zachary Spiritos, a specialist in gastroenterology and hepatology at North Carolina's UNC Health, told Newsweek: "Many people may be born with a vulnerability, and then something in the environment - often an infection or injury - triggers the onset of symptoms. It's multifactorial, and the exact blend is different for everyone." How Common Is PoTS? Prevalence estimates range widely: the Cleveland Clinic cites 1–3 million U.S. cases, while Dysautonomia International reports 3–6 million. This variability stems largely from under-recognition—most clinicians seldom consider PoTS during evaluation, according to Spiritos. Women account for approximately 80 percent of cases in the U.S., according to Dysautonomia International, likely due to hormonal influences and autoimmune predisposition. "This is partly because the X chromosome carries many immune-related genes, and women have two copies, which can lead to more robust, but also more error-prone, immune responses," Spiritos said, "[And] we see anecdotal patterns where estrogen can worsen PoTS symptoms, while testosterone may be protective." What The Experts Recommend For PoTS Patients Lesley Kavi from PoTS UK said that avoiding symptom triggers can be a good place to start for managing the condition, although this is very individual. For some, this could include avoiding prolonged standing, dehydrating things like the heat, alcohol, and caffeine, she added. Increasing fluid intake is essential, Kavi said, adding an adult with PoTS should aim to drink between two to three liters of water a day, or more if they exercise or are in a hot environment. In order to ensure the water stays in your system, increasing sodium intake is also important, Kavi said. Patients are advised to increase their sodium intake to as much as 10,000-12,000 mg per day, but each patient will respond best to a different amount. Compression clothing, particularly tights or leggings that cover the abdomen, are helpful in boosting blood circulation too, Kavi said. Typically medical grade compression is required of between 20 to 30 mmHg. "Exercise can be something that helps the most for some people, but the problem with exercise is that it can make others feel really terrible afterwards, even for a day or two," Kavi added. Starting "low and slow" is always the way to go, Kavi said, adding that it was important to get expert input. The best forms of exercise to start with are horizontal, she added, pointing to exercise bikes, Pilates, rowing machines, and swimming. Although, it is always best to get professional support, Blitshteyn said. "While there are no cures, there is treatment to help you improve and function better in your life." It is also important to remember "you're not alone and PoTS is a real, physiologic disorder," Adler said. "Many people go years without a diagnosis and are often told that their symptoms are from anxiety and it is in their head." Spiritos said it's a good idea to educate yourself, as "understanding the condition is empowering," and recommended listening to the POTScast and Bendy Bodies podcasts. "Ultimately, community and knowledge are power, and with the right tools, you can get better," he added.
BBC News
22-04-2025
- Health
- BBC News
Bridgwater endurance rider completes Lands End bike trial
A 24 year old woman has completed a motorcycle endurance event, ten years after being seriously injured in a rollercoaster incident. Hannah Cant, from Bridgwater, was struck in the back of the head by a piece of metal when she queued for a rollercoaster ride in May 2015, leaving her unable to walk Ms Cant has completed her first ever 243-mile motorbike challenge in 17 hours. "It was "wet, muddy and foggy and very physically demanding," Ms Cant said. After her accident, Ms Cant was diagnosed with 'Postural orthostatic Tachycardia Syndrome' (PoTS), an abnormality of the automatic nervous system which has affected the regulation of blood vessels and her heart rate. She wanted to raise money for the PoTS charity, who have helped her to live with the condition and improve her quality of life. Ms Cant has now completed her first ever 'The Lands End Trial', a 24 hour endurance event for people on motorbikes, bikes with side cars and classic cars, that starts in Bridgwater, goes along the Exmoor Coast, and finishes at St Agnes in Cornwall. She set herself an original fundraising target of just over £1,000 but said she "smashed" that and raised more than £2,800 - almost three times the original amount. She added that finishing 'The Lands End Trial' was "amazing" but that riding through the night "wears down your concentration" and she was "shovelling down nuts" after completing each section to keep her protein levels up. Ms Cant rode her 1990s Yamaha TTR 250 off-road bike during the race and said standing up and sitting down was actually better as it meant she was constantly moving around. Her husband James completed the event with her on his own bike, and she said they are both so proud that she got to the end of the course and got her certificate within the required time.
BBC News
26-03-2025
- Health
- BBC News
Tamworth woman, 18, says she was told her long Covid was anxiety
An 18-year-old who has been suffering from long Covid for five years says she turned to a private clinic for treatment after feeling "brushed off" by the Galloway, from Tamworth, has experienced heart issues, dizziness and fatigue since catching Covid-19 when she was 12."My life just completely changed," she said. "I was always running around, active and now some days I can't get out of bed or get dressed."The NHS said staff were working hard to help patients with the "new and complex condition", and specialist clinics had supported over 100,000 since 2020. Walking through Birmingham's Cannon Hill Park, Tilly looks like any other her exhaustion and breathlessness mean she can only manage short distances about once a week. Sometimes, if she wants fresh air, she uses a wheelchair."I really don't like it. I feel really self-conscious," she said."Whenever I do go out in it, I always get stares, as if people are wondering why I'm using one." She is one of more than two million people in the UK with long Covid, which can also cause joint pain and brain first, Tilly turned to the NHS for help, where she was told chest pains and breathlessness were caused by asthma and given an inhaler. Although this reduced her shortness of breath, tests later showed she was not asthmatic and diagnosed long often felt her symptoms were not taken seriously. "They just sort of brushed it off," she said."They all just blamed it on anxiety and mental health and said I needed counselling."It just constantly feels like you're fighting a losing battle." Often too ill to go to school, she ended up having to leave in year 10, with her mum changing jobs to work from home and care for an echo scan, she was eventually diagnosed with postural tachycardia syndrome (PoTS), a condition long Covid sufferers are more likely to be affected by, where the heart rate increases very quickly after getting NHS also diagnosed gastroapresis, where food passes through the stomach more slowly than it should. She was sent to an NHS long Covid clinic but said she did not receive much support beyond a physiotherapist and occupational therapist, who were only able to offer advice on adapting to her a lot of different tests, her paediatrician said her condition was "too complex", leaving her with no answers, she said. This prompted Tilly's mum, Nicola Booton, to join a Long Covid Kids website, which led her to Dr Ben Sinclair, a GP based in set up his own private long Covid clinic after recovering from the illness himself and is working with the University of Exeter on research into the condition. Dr Sinclair described her condition as complex, due to "significant risk factors"."Her case demonstrates that long Covid is not driven by a single factor," he hopes what he has learnt from patients like Tilly will assist in producing more guidelines for young people and children dealing with long Covid."What we're finding is that some people produce way too many antibodies and some people produce very little at all," he says. "And those two groups get this fatigue syndrome because their immune system is either overactive or exhausted. "There are some medications that can help, but the research is lagging behind." Since visiting Dr Sinclair, Tilly has been on a treatment plan where she has to take medication every day."It isn't cheap," said Ms Booton, who estimated she had spent about £20,000 on private treatment. "Financially there's been a big strain on us as a family."But, she feels it has been worth the cost to see Tilly getting stronger and making some steps towards recovery. Meanwhile, Tilly is being home-schooled and working towards her maths GCSE, when she feels up to hopes to contribute more in the future by becoming a children's paediatric nurse. An NHS spokesman advised anyone concerned about ongoing symptoms after Covid to talk to their GP."Since 2020, our specialist post-Covid clinics have supported over 100,000 people with the long-term physical, cognitive and psychological effects of coronavirus," the spokesperson added the NHS had been "world leading" in "designing and implementing new pathways of care" to support affected patients.
Yahoo
26-03-2025
- Health
- Yahoo
Long Covid campaigners send open letter to Health Secretary
More than 13,000 people have signed a petition calling for urgent investment in Long Covid and chronic fatigue services - highlighting the need to fund research that leads to effective treatments. The petition has been delivered alongside an open letter signed by organisations, charities, and clinicians - including Dorset-based charity Long Covid Kids (LCK) - to Health Secretary Wes Streeting MP and Public Health Minister Ashley Dalton MP, READ: Weymouth Long Covid campaigner hits out at clinic closures The letter urges the government to take immediate action, including halting further clinic closures and highlights growing concerns around underfunding, lack of training for healthcare professionals, and the continued unmet health needs of children and adults living with Long Covid, M.E., PoTS, and other related conditions. Campaigners also want to see a long-term strategy to fund biomedical research, treatment, and monitor the wider impact of Long Covid and M.E., informed by lived experience. READ: Funding for Dorset-based Long Covid services to be cut Their call comes as the UK reflects on the five-year anniversary of the first national Covid-19 lockdown and the axing of Long Covid services - including the Dorset service - which closes at the end of June. A new report by LCK also revealed alarming gaps in Long Covid care, with the charity's founder, Sammie McFarland, from Weymouth, calling for the closures to clinics to 'stop immediately'. Sammie set up LCK in 2020 after she and her daughter Kitty developed Long Covid. She said: 'Long Covid is not going away, and neither are the children and adults who live with its effects - we need to monitor the wider impact. 'We're calling for urgent action to stop clinic closures, invest in biomedical research, and train healthcare professionals. Our young people are saying loud and clear: we want to be seen, heard, and supported.' Alongside the petition and open letter to government officials, children and young people affected by Long Covid have released a powerful video titled 'Don't Shut the Door on Us, which is now live across X, Instagram, and YouTube. READ: Weymouth mother develops resource for kids with long Covid In the short film, young people hold up hand-written signs describing the reality of living with the condition before dropping them to the floor - a quiet but striking call for recognition, care, and action. Molly, 16, who lives in Weymouth says she feels 'abandoned and hidden from view' after the announcement of the closure of the Dorset Long Covid service. She said: "I'm in my GCSE year, but I can't even go to school. I've lost the ability to do the things normal teenagers do, and there's no real support or treatment. "Thousands of children like me are suffering in silence - we need research, we need help, and we need to be seen." Kitty McFarland, 19, has been living with Long Covid since 2020 (Image: Sammie McFarland) Sammie's daughter, Kitty, who now needs to use a wheelchair due to the symptoms brought on by Long Covid expressed her gratitude for LCK and how important the charity is, especially now NHS services are closing. She said: "If long covid kids didn't exist, doctors would still believe only adults could get long covid, we are all incredibly grateful that the charity was created to educated others as no one else believed us."
