POTS on the rise

It's still unclear how many covid patients develop POTS. Studies show that anywhere from 2 percent to 14 percent of people with covid develop POTS. One study of long covid patients found that overall 30 percent met the criteria for POTS, although it was far more common in women. In that study, 36 percent of women met criteria for POTS compared to 7 percent of men.

Before the pandemic, Tae Chung, director of the Johns Hopkins Postural Orthostatic Tachycardia Syndrome (POTS) program, said he had an appointment wait list that was about a year long, which was on par with many other POTS clinics. Now it's a little over two years long, he said.

Fries, the cardiologist and POTS specialist at Rochester Regional Health, said most cardiology appointments take about 40 minutes, but because of the complexity of symptoms associated with POTS, most of his appointments with POTS patients take 60 to 80 minutes. Because his caseload of POTS patients has roughly doubled since the pandemic, leading to longer wait times, Fries has started working on Saturdays.

A lack of answers

After Jillian York, 17, of Spring, Tex., got covid in June 2022, she experienced stomach aches and excessive sweating, and began having trouble sleeping. She felt dizzy after standing up and like she might faint when she performed as a drum major in her marching band. Getting up from the sofa caused her to blackout for a few seconds.

Her mother, Heather York, 49, said she initially thought the Texas heat was to blame, but it soon became apparent that something was off.

She started taking her daughter to doctors, but felt dismissed. Doctors attributed Jillian's symptoms to her recent weight loss, despite the fact that she remained at a healthy weight.

Jillian said doctors made her feel "minimized." "I just felt really lost," she said.

Finally, in November, her mother took her to a pediatric neurologist, who told Jillian that she had POTS.

Jillian has struggled to find a treatment that works. She has seen numerous cardiologists and other specialists and tried alternative interventions like acupuncture. Physical therapy has offered some relief, she said.

"The lack of answers is the most frustrating thing that I have to go through," Jillian said. "I know that more and more people are getting it, so why is it not being talked about?"

At least a million new patients

While nobody knows exactly what causes POTS, symptoms commonly develop following a concussion or viral illness, said Satish Raj, a cardiac sciences professor and POTS expert at the Libin Cardiovascular Institute at the University of Calgary. Most POTS patients are women.

"There's an element of dismissiveness and misogyny in the room. The POTS demographic is women who, for the most part, look pretty well," Raj said. "They complain that their heart is racing, and I think that gets dismissed as anxiety a lot."

POTS wasn't widely recognized as a real condition by the medical industry until a little more than two decades ago. In the United States, the condition only received a distinct diagnostic code in October 2022. Without a diagnostic code, POTS often got lumped in with other heart conditions, which is why it's been difficult to track the overall number of POTS patients.

Before covid, experts estimated there were about 1 to 3 million Americans who had POTS. And now there are at least 1 million or more new POTS patients as a result of covid, said Pam R. Taub, a cardiologist and professor of medicine at UC San Diego School of Medicine, who is researching post-covid POTS for National Institutes of Health's Recover covid initiative.

Another barrier is that even after POTS was recognized, there historically has been little funding from organizations like the National Institutes of Health to research POTS or any potential cure. One analysis found that NIH allocated, on average, $1.5 million dollars for POTS research funding per year between 2015 and 2020, whereas other diseases that are about as common in women as POTS, like multiple sclerosis and lupus, have received an annual average funding of $118 million or $127 million respectively.

Potential treatments for POTS

POTS patients often have low blood volume and difficulty with blood vessel constriction, so their blood tends to pool below their heart when they stand up. This depletes vital blood flow to the brain and can result in dizziness, brain fog or fainting.

Ingesting more salt and drinking more water may help people with POTS retain more fluid and increase their blood volume, experts say.

In a small, controlled Vanderbilt University study, researchers found that a high salt diet improved but didn't eliminate many symptoms of POTS.

How much salt and water an individual with POTS needs can vary, but a high-salt diet may not always be appropriate for patients with cardiac complications from covid or high blood pressure, according to Svetlana Blitshteyn, an associate neurology professor at the University of Buffalo who is the director and founder of the Dysautonomia Clinic, which specializes in treating POTS patients.

Other interventions include beta blockers or other drugs that can decrease heart rate. Medications to help the body better absorb salt and fluid, or blood vessel constriction medication, which allows the body to more easily get blood back to the heart and brain, are also used, she said.

Physical therapy can also help many POTS patients, according to Thomas Chelimsky, neurology professor and director of the Comprehensive Autonomic Program and Autonomic Laboratory at Virginia Commonwealth University.

Because POTS patients are sensitive to the effects of gravity, he typically has his patients start exercising from a seated or laying down position, or while in a pool.

With treatment, Maura White, 44, of Rochester, N.Y., has significantly improved. She was diagnosed with POTS last October after getting sick for a second time with covid in April 2022. Before she got help, she was fainting about once a week and had a fluctuating heart rate.

"I met with my general practitioner four, five or six times, each time going in, crying and saying 'I'm not getting better, I'm not getting better.' She would just say 'You're going to get better,'" White recalled.

It wasn't until White went to physical therapy that she found out she might have POTS. White was finally diagnosed by a cardiologist in October and started taking beta blockers along with wearing compression stockings, eating more salt and doing physical therapy.

She hasn't fainted since starting the treatments. Although she used to be an avid runner, she isn't able to stand for long stretches of time. Now she sits on a bench to shower, relies on grocery pickup so she doesn't have to walk store aisles and rents a scooter for longer outings. She also sleeps about 12 hours a night and continues to have other symptoms like tingling hands and feet, muscle twitches, diarrhea and brain fog.

Worsening symptoms after covid

In some cases, covid seems to be worsening symptoms for existing POTS patients. Hanna Rutter Gully, 32, of Brooklyn developed POTS at the age of 17 after a concussion while playing soccer. She wasn't diagnosed until six and half years after the injury.

Her symptoms, which included dizziness, migraines, cognitive issues and fatigue, made it difficult for her to attend college. She took an extra three semesters to graduate, finished many semesters remotely and had her sister move in with her in her final year of college to help her.

So tender to the touch!

It's ME/CFS and Chronic Lyme for the TikTok generation, rivaled only by Ehlers-Danlos, ADHD and autism as the self-diagnosis du jour.

Mommy said we have POTS!!!

And you WILL accommodate us.

That's good news!

Oh lord I’ve heard it all now.

So long Multiple Chemical Sensitivities, Lupus, and Fibromyalgia, these days it's all about your doctor not believing you have POTS.

I have POOTS.

This is weird. First off, I'm a male and secondly I have not had COVID, but the symptoms described are exactly the same as I've been going through over the past several weeks. Have an appt. with the doc this Thursday.

Thanks, China!

I know a 24-year-old woman who has had this for a year, since getting covid. The worst symptoms for her are intense dizziness every time she stands up and frequent racing heartbeat. Luckily, she has found a job she can perform remotely. But her life is not fun these days. Doctors have no idea if the symptoms will subside with time.

Smoke copious amounts of POTS, silly!

My brother has it. He still works but he's fainted a few times. He's definitely not a malingerer of any kind, but covid fucked him up pretty good

Have had neuropathy, chilly extremities, insomnia and dizzy spells since both getting COVID and the vaccines.

WAY TL;DR

Time to bring back fainting couches.

Awww, my generation's fibromyalgia. We finally invented something new and exciting!

From reading the article, it seems like it might be caused by sudden and excessive weight loss due to undereating/malnutrition relative to energy expenditure? Just because you’re within a healthy weight range theoretically for someone doesn’t mean that the extreme low end of the range is actually healthy for you, or that what you’re doing to maintain it is healthy…

[quote]Time to bring back fainting couches.

Bring back? Mine has never left my salon.

R19 my doctor tried to tell me that a chronic cobalamin deficiency I have had for a decade due to parietal problems from birth was from an eating disorder I was keeping secret (I was not).

The medical profession truly hates women on a systemic level.

Gen Z Fibromyalgia.

R22, I know quite a few previously very athletic people who are struggling after covid. My brother was one of them. I literally had to tell him that when I visit we can do one 20 mile bike ride OR a canoe trip OR a long ass hike or a few days of tennis, but not all that shit. Now he snow shoes or cross country skis but no where the distances he used to. He's getting better but it's very gradual. May be something to the no fat to spare theory

[quote]I literally had to tell him

*eyeroll*

What's with the cuntiness, r24? It's not like I said, "I literally died". ...you first

My 29 y. o. niece has POTS, Ehler-Danos, and self-diagnosed autism. And chronic Lyme disease.

She doesn;t work and stays home with the infant daughter, except when even that is too much and her mother (my sister) cares for the little girl.

we are all taking bets as to when her husband tires of all this and leaves her.

r23/r25, I am not r24, but he is mocking the fact that you claimed you "literally had to tell" your brother that.

You did not [italic]literally[/italic] "have to" tell him that, unless a gun was at your head. You [italic]chose[/italic] to tell him that. No one forced you to tell him that.

I'm the younger sibling and have always happily followed after him. Sorry your family hates you

R10, can I have your stuff?

r19 overall, it's related to body having trouble regulating it's own systems in some way... and this leading to a specific set of symptoms.

But yes, often it's related to rapid changes.

So, imagine you have a "level" and normal is getting that little bubble to stay within the lines. . . if it veers off into the extremes, then people may develop the criteria for pots. if things move closer to normal, the primary cause may be found and addressed and some may recover but as it's not a one size fits all, others may get progressively worse.

Unfortunately, because of this.. it's one of those conditions that is frequently used to grift... it doesn't take much to fake.

also, some treatments can make it worse... it can be difficult for medical professionals to recognize the difference between a seizure and fainting, and especially if it doesn't take place in front of them.. if one is fainting or having seizures of unknown origin, it's good to somebody record the episode or setup cameras if they're alone. One would hope that would help professionals make a determination... because anti-seizure medication can have major side effects and used as a last resort.

It's a fake disease for women who want to be babies forever

Shut the fuck up, r27.

The fussbudget act may have been great fun back in 1998, but it's 2023. Not to mention, DL allows the absolute worst homophobia, racism, constant troll posts, political propaganda, and massive amounts of misinformation, and you old coots never say a word about that, but then have lengthy meltdowns when someone speaks colloquially or, heaven forbid, uses slang.

You're not smarter, better, or more ethical because the casual use of the word "literally" makes you stroke out, you just have misaligned priorities.

[quote]regulating it's own systems

Oh, dear!

R32 This really grinds my gears too. I'm surprised nobody here demands that posts be scanned and uploaded in handwritten cursive.

[quote]You're not smarter, better, or more ethical because the casual use of the word "literally" makes you stroke out, you just have misaligned priorities.

I'm not r27, but someone gave the poster an eyeroll. Hardly "stroking out." You sound closer to it than they do.

I wasn't talking to the person who merely said "eyeroll," r35, nor was I referring to them. That seems very clear in what I wrote. It's odd that you weren't able to understand that.

Been there done that bitches.

^ Count me in.

Don't forget me Karen!

I've dealt with a lot of people with POTS as part of my job though I'm not a doctor or healthcare professional. This article is very misleading. I believe t's a relatively minor affliction that can be successfully treated in 99 percent of the cases and has limited impairments on day to day living. If someone is in a wheelchair it is not because of POTS. Don't lump it in with fibro or eds though.

I have all the symptoms of Cunt's Disease.

Give me a break. I was not even the one who mocked you at r24, you big baby. I was only answering the question at r27 you yourself asked at r25 as to why r24 was mocking you.

[quote]If someone is in a wheelchair it is not because of POTS.

I know neurologists, cardiologists and psychiatrists who are alarmed by the rise of ambulatory wheelchair usage among young women with POTS, chronic fatigue and hypermobility syndromes. They obtain mobility aids against the advice of their doctors without fully understanding the lasting damage it can do to their health.

Many have fallen prey to the same "sickfluencers" on social media. Some even cry and throw fits in exam rooms after physicians tell them their self-diagnoses are wrong. You can witness a lot of this unfold almost in real-time on particular subreddits, where participants tend to be in the same age range and have the same mental health challenges. This is a separate group than adults who've struggled with their health post-COVID.

I had these exact symptoms in the early 90s when I was about 15 pounds underweight and didn’t eat regularly.

Now that I’m slightly overweight and eat on a normal schedule, no more fainting, irregular heartbeat, and lightheadedness!

Isn’t that amazing?

I've been telling you guys it's on the rise for years, but you wouldn't listen. You dismissed me.

DL, I came to you sick, sick and scared and you dismissed me. You didn't have the answer and instead of saying 'I'm sorry I don't know what's wrong with you', you made me feel crazy, like I made it all up. You dismissed me! You made me feel like a child, a fool, a neurotic who was wasting your precious time. I don't know where you DLers lose your humanity, but you lose it. You know, if all of you at the beginning of your time here could get very sick and very scared for a while, you'd probably learn more from that than from anything else. You better start listening to your posters.

Regardless, as angry as I am and as ANGRY as I always will be, I still wish you better posters than you guys gave to me.

R45 expect valid medical advice from a bunch of arrogant bitches like us???

Perhaps. Or perhaps not. But valid medical advice is different than being dismissed.

You dismissed me!

I suspect had I not been a DLer, you would've taken me seriously and wouldn't have told me to get my hair done.

POTS can usually be easily diagnosed via a tilt table test so it's not as vague and nebulous as the article may imply.

[quote]I know neurologists, cardiologists and psychiatrists who are alarmed by the rise of ambulatory wheelchair usage among young women with POTS, chronic fatigue and hypermobility syndromes. They obtain mobility aids against the advice of their doctors without fully understanding the lasting damage it can do to their health.

The problem is that doctors don't give the right advice so unfortunately people search in the wrong places. Doctors don't give the right advice because they simply don't know enough - such disorders are complex and insufficiently researched. Had the proper research been done before now, the medical system would be better able to cope with long COVID. Ah well!

Bethenny Frankel has this.

[quote] Doctors don't give the right advice because they simply don't know enough

That's what the conversion disorder patients always say.

When people are underweight and / or chronically dehydrated, they will often have abnormally low blood pressure.

It’s the abnormally low blood pressure that causes the problems— lightheadedness, irregular heartbeat, fainting.

That’s why salt helps— it gets the blood pressure up.

Doctors need to determine the source of the abnormally low blood pressure. Low thyroid? Malnourishment? Dehydration? That’s the best way to address POTS.

I can’t decide which 1940s starlet r45 sounds like.

[quote]I can’t decide which 1940s starlet [R45] sounds like.

Beatrice Arthur.

R51, I don't keep track of what people with conversion disorder say. I'm mostly concerned with the emerging research.

R45 I love you! I have this Monologue memorized and often break it out To the confusion of others.

R45, one cause of all these diseases may be psychiatric medication, or multiple side effects resulting from multiple drug interactions that have never specifically been the subject of any studies. Speaking from experience, I was on these types of medications for a few years in early adolescence, and it took years for me to function as myself again. Some of these medications even have “do not take if under 18” warnings, and doctors prescribe them anyway. People are taking more medications and spending more money on them but actually getting sicker.

“The more medications you are taking, the higher the risk of those drugs interacting dangerously with each other. Multiple medications can cause confusion, lightheadedness and even internal bleeding — all dangerous and injurious conditions.“

[quote] Speaking from experience, I was on these types of medications for a few years in early adolescence, and it took years for me to function as myself again. Some of these medications even have “do not take if under 18” warnings, and doctors prescribe them anyway. People are taking more medications and spending more money on them but actually getting sicker.

Yes, cosigned. I was given antibiotics plus birth control for just two years, and the resultant interaction fucked me up for a decade.

“About 128,000 people die from drugs prescribed to them. This makes prescription drugs a major health risk, ranking 4th with stroke as a leading cause of death. “

“In a recent decade, between 2002 and 2011, independent reviews by clinical expert teams in France, Canada, and the Netherlands have concluded that only 8 percent of 946 new products were clinically superior, down from 11 to 15 percent in previous decades (see Figure, below). Only 2 were breakthroughs and another 13 represented a real therapeutic advance.“

I would be very thankful for hospital care if I had an injury, but the best care can be very simple. Have opportunities for rest and recovery. Treat any possible wounds as possible entry points for staph infection, take them very seriously, and don’t put yourself in a situation where you have to take antibiotics in the first place if you can help it…antibiotics can mess up gut bacteria, which has a larger long term health impact.

We’d be healthier as a society if less people were under financial stress and housing stress. Workers’ rights…

“Scientists are beginning to discover that antibiotic use – and overuse especially – is associated with a range of problems that affect, among other things, glucose metabolism, the immune system, food digestion and behavior. They also suspect it is linked to obesity and stress.“

Love you right back, r56!

“U.S. spends the least on social services. The U.S. spends only 9 percent of GDP on social services like disability benefits or employment programs. It is the only country studied where health care spending accounts for a greater share of GDP than social services spending. In contrast, France and Sweden spent 21 percent of GDP on social services.“

How is this different from vertigo, which Lucille Austero has?

I've had this all 60 years of my life. It's pure hell.

It's nothing like Vertigo r64.

Bethenny Frankel looks as if she has disordered eating. That probably doesn't help her body, especially after a bout of Covid.

Are you very thin, r65?

Lé Frau disease du jour

R66 I was very thin when I was young, not so much now.

My blood pressure ranges anywhere from in the 30's to 210/120. I faint, have seizures, twice my blood pressure fell so low my heart stopped beating.

My heart goes crazy for no reason and beats out of rhythm.

A lot of it is caused by adrenaline surges.

Great! Something new for me!

Low blood pressure on its own will not cause a heart to stop beating; something else would have to be in the mix for that.

[quote]My heart goes crazy for no reason and beats out of rhythm.

The syncopated rhythm?

If they claim it's from covid, it's really from the vax.

POTS = Plain Old Telephone Service....first thing that came into my mind. Worked for the phone company...lol.

Why does every current POTS patient fit the same profile: typically female, gay or trans, purple mullet, under 30, co-existing mental condition(s).

R74, in my opinion, it’s because of the effect of psych meds. They really impede all aspects of life. They make you feel tired, mentally hazy, prone to extreme emotions, disassociated from yourself. They result in social isolation and extremely sedentary lifestyles, which then lead to an assortment of physical problems. And it doesn’t help that the outside world can be nasty too, especially towards women, non-stereotypically masculine men, overweight or disabled people, etc. Most people would have benefited a lot from activity programs and social groups in early childhood on, not on the internet but in real life, and from a less nasty social environment in general.

“Drugs that may lead to depressive, anxious, or psychotic syndromes include corticosteroids, isotretinoin, levo-dopar mefloquine, interferon-a, and anabolic steroids, as well as some over-the-counter medications.“

“Psychotropic drugs are increasingly being exposed as chemical toxins with the power to kill. Psychiatrists claim their drugs save lives, but according to their own studies, psychotropic drugs can double the risk of suicide. And long-term use has been proven to create a lifetime of physical and mental damage, a fact ignored by psychiatrists.”

Common and well-documented side effects of psychiatric drugs include mania, psychosis, hallucinations, depersonalization, suicidal ideation, heart attack, stroke and sudden death.“

Sorry, wrong link ^

Literally, everyone at my Starbucks has it!

R76 isotretinoin is the worst, should be banned. That shit broke my 17-year old brain.

“Today in the United States, more than one in five adults — and more than one in 20 children and adolescents — take a psychiatric drug on a daily basis.

Yet even as more and more people have been getting medical treatment for psychiatric disorders, the number of adults on government disability due to these disorders has more than tripled since 1987. The number of children so disabled by psychiatric disorders has increased more than 30-fold during this period.“

Pharmaceuticals are one of the main industries of the U.S. It doesn’t seem to be benefiting either us or the rest of the world health-wise that this happened, since psychiatric medications have increased the rate of mental illness in every country they have been introduced in. All since 1987.