POTS In The News Relevant articles: 2023 A Little Known Nervous System Disorder Caused My Long COVID Symptoms Women’s HealthSujana Reddy, DO, with additional reporting by Jackie Lam | May 6, 2023For people with POTS, their blood vessels don't contract properly to promote blood flow to their heart and brain while they're standing. This causes dizziness, fainting, and exhaustion when standing for a long time.So, the longer they're upright, the more their blood pools in the lower part of their body. This results in not enough blood returning to the brain and causes lightheadedness, brain fog, and fatigue. As their nervous system continues to pump out hormones to get the blood vessels to tighten, their heart rate increases, leading to chest pain and shakiness.The treatment for POTS is mainly increasing blood volume to improve circulation. I started trying different medications, and none of them worked for me. So, I'm treating it by drinking a ton of water, taking salt tablets to help my body retain fluids, and wearing compression stocking to get my blood flow going. I also get a weekly IV infusion now of one to two liters of fluids depending on how sick I am.Click to read more A condition called POTS rose after covid, but patients can’t find care Washington PostAmanda Morris | February 27, 2023“When the autonomic nervous system is not functioning properly, any or all of those things can go a little haywire,” said David R. Fries, a cardiologist and POTS specialist at Rochester Regional Health.POTS patients typically experience a marked rise in heart rate when standing and a complex combination of symptoms, including dizziness, brain fog, fainting, headache and fatigue, among many others.There is no known cure for POTS, but physical therapy, medications and diet changes related to salt intake can sometimes help.Experts say there is a dire shortage of medical professionals who know how to care for patients with POTS. Lauren Stiles, president and chief executive of Dysautonomia International, a nonprofit advocacy group, estimates that the number of people with POTS has at least doubled since the start of the pandemic, while the number of specialists has remained the same and waiting lists are getting longer.Click to read more 2022 These Five Women Are Helping Doctors Crack the Long-Covid Mystery BloombergJason Gale | November 1, 2022Seven months later, while enrolled in a study into Covid’s effects on the heart, she learned the cause: a condition called postural orthostatic tachycardia syndrome, or POTS. Even standing at the kitchen sink doing the dishes can bring on the feeling that she’s about to faint, and her doctor advised her to use a wheelchair to conserve her energy. “It’s almost like I’m wrapped in a lead blanket,” says McGinn, who was diagnosed with chronic fatigue syndrome (CFS) in July and told two months later that she’ll never be well enough to work again. “It still feels like I’m running a marathon when I’m just standing there washing my hair.”Researchers say POTS occurs when Covid damages the autonomic nervous system that controls heart rate, blood pressure, digestion and body temperature. Although some sufferers recover, the majority live with it as a long-term, chronic condition.POTS can be a foreboding sign. With time, patients often resemble those with chronic fatigue syndrome, Yale’s Iwasaki says. A study of 41 long-Covid patients published in December found almost half met the diagnostic criteria for chronic fatigue syndrome. Acute infections are believed to be a leading cause of the syndrome, which leaves at least a quarter of sufferers bed- or house-bound for long periods.Click to read more Mom of 2 shares journey to wellness after diagnosis with POTS, gets second chance at life News 5 ClevelandMike Holden | October 25, 2022"Some studies show it can take six or eight different medical providers—many years before people get diagnosed," said Dr. Robert Wilson, Neurologist and Director of the Autonomic Center in the Department of Neuro Muscular Medicine at Cleveland Clinic."It makes you feel a little less crazy because he confirmed like, yes, these are the symptoms. This explains it. I was losing hair. I mean, hair was just coming out," said Botti.Wilson says POTS is caused by reduced blood volume when a person stands up — specifically, intolerances to postural changes and the body's inability to regulate blood volume.It’s most common in women ages 15-50, but men are frequently diagnosed as well.Wilson says POTS can be caused by a severe head injury, viruses — like COVID-19, and autoimmune issues.Click to read more West Ham goalkeeper Sophie Hillyerd on POTS, the condition 'that nobody else can see' ESPNTaryn Heddo | October 20, 2022The lack of answers is a common theme among patients who have Long COVID. In a Pultizer Prize-winning explainer on Long COVID by Ed Yong, patients describe the dismissal or disbelief of their symptoms by friends, family and even medical professionals. However, Hillyerd spoke glowingly about the medical team at Charlton, led by Dr. Chris Schoeb, and the way that they continued to pursue answers in the face of inconclusive tests."He never gave up," she said of Dr. Schoeb, and he helped her book an appointment for the specialist to confirm his suspicions of a condition known as POTS.Postural orthostatic tachycardia syndrome -- POTS -- has some tell-tale signs. They can include dizziness, brain fog, chest pains, fatigue, and a heart rate that increases by over 30 when standing. It is also a common diagnosis for people experiencing Long COVID. Most people have never heard of the condition, let alone know what the signs are, and can go months or even years before diagnosis.Click to read more Long COVID and POTS: 7 questions about the condition, including if it can go away on its own Nebraska Medicine October 20, 2022Normally your body regulates itself without you having to think about it. You can get up and sit down without a thought.But some people feel dizzy, tired or even faint when standing up. This syndrome is called POTS. "POTS means there's an imbalance with the nervous system," says cardiologist Dan Anderson, MD, PhD. "Basically, there's an overreaction to simple movements. The body isn't keeping things controlled in a balanced way."Click to read more Can Postural Orthostatic Tachycardia Syndrome, POTS, Be A Long Covid Symptom? ForbesBruce Y. Lee | September 3, 2022Technically, POTS is not an allergy, per se. It has nothing to do with your immune system responding or reacting to gravity. Quite the opposite. It’s about your body not being able to fully react to gravity as it normally does. It’s when your cardiovascular system can’t maintain enough blood flow to your head when you change your body position. And getting blood to your head is important for two reasons. First, it’s your head, which ranks fairly high on your list of important body parts. Secondly, red blood cells are what carry oxygen to cells throughout your body. Without enough oxygen, cells like those in your brain can’t fully function.Click to read more How long covid could change the way we think about disability The Washington PostFrances Stead Sellers | June 6, 2022Mallory Stanislawczyk was hesitant to make the call. She hadn’t spoken to her friend in years. But the friend, who gets around in a wheelchair, was the only person the 34-year-old nurse practitioner could think of who would understand her questions. About being ready to accept help. About using a wheelchair. And about the new identity her battle with long covid had thrust on her.“I think she is the first person I said to, ‘I’m disabled now,’” Stanislawczyk recalled telling the friend. “‘And I’m working on accepting that.’”Click to read more Halsey opens up about being called 'crazy, anxious and lazy' before recent health diagnoses USA TodayHannah Yasharoff | May 12, 2022"I started getting really, really, really sick. I've been kind of sick most of my adult life, but it started getting really bad (after giving birth)," Halsey continued, noting she is "allergic to literally everything" and was hospitalized for anaphylaxis.The singer saw "100,000 doctors" before getting diagnosed with Ehlers-Danlos syndrome, Sjogren's syndrome, mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS).Click to read more ‘I Had Never Felt Worse’: Long Covid Sufferers Are Struggling With Exercise New York Times February 12, 2022Dr. Lambert pointed out that some patients with long Covid are also diagnosed with postural orthostatic tachycardia syndrome (or POTS), a disorder that affects blood flow.In people who have POTS, “the nervous system can’t regulate the things that it’s supposed to automatically control, like heart rate, blood pressure, sweating and body temperature,” she said. Yet “those are all things that when you’re exercising need to be regulated properly.”Click to read more What Is POTS? US News & World Report January 11, 2022Because POTS is not as well known as other disorders, it can take a long time to get a diagnosis. A patient may see a cardiologist for the rapid heart rate, a gastroenterologist or primary care doctor for the GI effects and a dermatologist for skin lesions. That makes it hard to bring together all the symptoms for the right diagnosis. "On average, our patients have seen seven different providers prior to reaching our POTS clinic," says Jillian Myers.Click to read more 2021 ‘Jeopardy!’ apologizes for an ‘outdated and inaccurate’ clue about a debilitating medical condition CNNDavid Williams | June 23, 2021The popular TV game show “Jeopardy!” is apologizing for using what it called “outdated and inaccurate” information for a clue about a medical condition that affects millions of Americans.The contestants on Monday’s show were asked about postural orthostatic tachycardia syndrome (POTS) – a little-known disorder that affects blood flow and causes a rapid increase in heartbeat, lightheadedness and fainting when patients stand up.“Postural Orthostatic Tachycardia Syndrome is also known as Grinch syndrome because this organ is too small,” the $600 clue in the category “Plain-Named Maladies” asked.The answer they were looking for was “What is the heart?” because of a 2010 paper that suggested the “Grinch Syndrome” nickname because of its findings that POTS patients’ hearts were too small.But many POTS sufferers argued on social media that the name was offensive for comparing them to the famously not nice Grinch from Dr. Seuss’ “How the Grinch Stole Christmas.” It’s also inaccurate because the condition appears to be related to the autonomic nervous system, which regulates the body’s involuntary functions, such as heart rate, breathing and sweating.Click to read more After Months Of A Racing Heart And Burning Feet, A COVID Long-Hauler Gets A Diagnosis NPR May 22, 2021Don't be surprised if you've never heard of POTS. "There's been a lack of awareness" of the condition, even within the medical community, says Dr. Tae Chung, a POTS specialist at Johns Hopkins Medicine in Baltimore.The syndrome is estimated to affect about 1 million to 3 million people in the U.S. — most commonly women, young adults and adolescents. But the COVID-19 pandemic has brought new attention and many new diagnosed cases.Click to read more On the Heels of COVID-19: Influx of Patients with POTS Symptoms Johns Hopkins MedicineLisa Eddy | April 30, 2021Every flu season, Chung expects to meet new patients — as many as half of all patients with POTS previously had a viral or bacterial infection — but he’s never seen an influx of patients like the one he is seeing now.“The virus clearly seems to be affecting the autonomic nervous system,” says Chung, “and we are seeing it manifest in two scenarios.”These scenarios include patients who begin having POTS symptoms during the acute phase of COVID-19, and patients who don’t present with POTS symptoms until weeks after the acute phase.The current proposed pathology for POTS is an inability to regulate blood volume. Researchers suspect that vasomotor denervation causes dilation of the blood vessels, leading to reduced preload to the heart, which triggers an increase in the central sympathetic nervous system response. Resulting symptoms are likely related to inadequate blood circulation and overcompensation by the sympathetic nervous system.Click to read more 2015-2020 The article I wish I'd had: Diagnosed with POTS and still anchoring the news WPDESummer Dashe | November 13, 2019I can’t pinpoint the day I woke up and my body stopped working as it should. For me, it was gradual, but sudden all at the same time. Some patients with POTS can tell you the exact date their autonomic nervous system malfunctioned.The autonomic nervous system controls everything you don’t think about. Think “auto,” like “automatic.” Some of those tasks include breathing, digestion, pupillary response, temperature control, heart rate, bladder function and blood pressure. That means the effects are widespread and symptoms are many. Vanderbilt University in Nashville, Tennessee, has an autonomic dysfunction clinic. Their criteria for diagnosing someone with POTS is an increase in heart rate of at least 30 beats per minute upon standing.Click to read more POTS: Tori and Nick Foles battle 'the most common condition you've never heard of' CNNSandee LaMotte | June 26, 2018“Research from Mayo Clinic shows that the quality of life in POTS patients is similar in what is seen in congestive heart failure, or chronic obstructive pulmonary disease,” said Dysautonomia International co-founder and President Lauren Stiles, who is also a POTS patient.It’s estimated POTS affects between 1 and 3 million Americans. But since so few doctors are educated on the symptoms, experts believe numbers could be much higher, both in the US and in the rest of the world. POTS support groups are found in Australia, Brazil, Canada, Egypt, France, Germany, Ireland, Israel, Japan, Mexico, the Netherlands, New Zealand and the United Kingdom.Click to read more 12 'Embarrassing' Symptoms of Dysautonomia We Don't Talk About Yahoo NewsErin Migdol | January 31, 2018“Memory loss and brain fog. It’s embarrassing to have to pause to (hopefully) remember my birth date, phone number, social security number, address and other basic information when people ask.” — Kelliann G.“Brain fog. People think you’re incompetent for being forgetful unless you’re able to explain POTS to them. And even when you do, some think you’re a hypochondriac.” – Desirae L.Click to read more Speedskater Brittany Bowe After Concussion: “I Wasn’t Sure Returning To Sport Would Even Be An Option” TeamUSA.orgBrittany Bowe | October 19, 2017For those of you new to my journey to the 2018 Olympics, I should start by explaining that I suffered a concussion last season that led me to the decision to end my race season early and focus on my health. A number of challenges arose after my injury. After showing signs of vestibular dysfunction for a prolonged period, I was diagnosed with Post-Concussion Syndrome – not uncommon after sustaining a head injury. Another issue, which isn’t as common, is called “POTS.”I was diagnosed with POTS back in October 2016 after having fainted on more than one occasion, and little did I know this relatively unknown diagnosis would become a daunting part of my everyday life. POTS stands for postural orthostatic tachycardia syndrome, and essentially means the body does not control blood pressure or heart rate as it should after you stand up. This can make you feel dizzy, lightheaded and lead to fainting.After the diagnoses, I began a vestibular rehab program, began monitoring “POTS” episodes and continued to train to the best of my ability, with hopes of competing in the world single distance championships and having the chance to defend my world sprint championship title. After months of having more downs than ups, I realized that there was more than salvaging a season that I needed to be worrying about.Click to read more ‘Bubble girl’ is allergic to life CNNJacque Wilson | August 25, 2015It wasn’t until shortly before her 16th birthday in 2010 that Brynn had her first serious allergic reaction. The next two years became a blur of sick days and doctors’ appointments.Brynn saw specialist after specialist. The gastrointestinologist diagnosed her with gastroparesis, or partial paralysis of the stomach muscles. A cardiologist said she had POTS, or Postural Orthostatic Tachycardia Syndrome – meaning that when she stood up for longer than a few minutes, her blood pressure dropped, leaving her light-headed and nauseated. A Wake Forest doctor diagnosed her with Ehlers-Danlos syndrome, a connective tissue disorder that causes fragile skin and overly flexible joints.Click to read more Frequent Fainting: a Sign of Autonomic Nervous System Trouble? US News & World ReportMagaly Olivero | April 8, 2015If you’re prone to feeling dizzy or fainting simply from standing, you may be suffering from a legitimate medical condition that often goes undiagnosed and untreated.An estimated 500,000 to 3 million Americans have postural tachycardia syndrome, a disorder of the autonomic nervous system that causes people to experience an excessive increase in their heart rate when they stand. About 80 percent of patients are women, most in their childbearing years.Symptoms include dizziness, fainting, fatigue, lightheadedness, heart palpitations, headaches, tremors, anxiousness, poor concentration, blurred vision and shortness of breath. The symptoms typically worsen on standing.People with POTS often slip through the cracks because the symptoms are difficult to diagnosis and sometimes cast aside by the medical community, experts say."A lot of these patients are being dismissed. Doctors who aren't familiar with the condition are likely to tell patients they're crazy, stressed, depressed or aren't getting enough sleep because they have young children," says Dr. Sadaf Khorasani, a neurologist at Saint Francis Hospital and Medical Center in Hartford, Connecticut.Click to read more
