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The article I wish I'd had: Diagnosed with POTS and still anchoring the news

For the last three years, I’ve started my day on the floor and ended it on the news. When I was first diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS, I researched. I read articles and journal entries and blog posts. I stayed up until the early morning hours Googling and searching the internet until I couldn’t find anything new to read anymore. I research. It’s what I do. I’m a journalist. My job is to find answers, but when I started feeling sick in 2017, I couldn’t find any answers, so I’m writing for you the article I wish I’d had.

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Featured

  Mystery Diagnosis: A Cold, A College Student, A Collapse and the New York Times

Could you have POTS without knowing it? Let’s take a short look at POTS.

  POTS: Explained by Doctors & Patients

Postural Orthostatic Tachycardia Syndrome (POTS) is both mystifying and misunderstood by nearly everyone, including most doctors. A relatively new disease, POTS still lacks a set of universally followed, predefined treatment guidelines. (This often results in confusion and frustration among patients and their physicians.) Instead of regurgitating the little information about POTS that can be found in medical textbooks, we decided to survey POTS patients (over 900 of them).

Articles of Interest

For Covid Long-Haulers, a Little-Known Diagnosis Offers Possible Treatments—and New Challenges

A disorder called POTS offers some treatment paths, but they are often arduous.

Ailment Can Steal Youth From the Young

It has taken some youngsters with the syndrome as long as a decade to get a proper diagnosis, by which time their teen years are a washout.

Diagnosis and management of postural orthostatic tachycardia syndrome: A brief review

Postural orthostatic tachycardia syndrome (POTS) has been recognized since at least 1940. A review of the literature identifies differences in the definition for this condition and wide variations in treatment and outcomes. This syndrome appears to describe a group of conditions with differing pathophysiology, which requires treatment tailored to the true underlying disorder.

First potential biomarker for a debilitating fainting condition

Nearly 90% of those in the largest-to-date study of patients with postural orthostatic tachycardia syndrome had elevated levels of a specific autoantibody. The finding both adds significantly to the evidence that POTS is an autoimmune disorder, and identifies a key biomarker that might allow diagnosis with a simple blood test.

Invisible Illness: How to Sustain Hope?

Imagine not knowing which symptoms will hit, and when, and never being able to plan for tomorrow, let alone for your whole future. And imagine a world in which it’s extremely hard to find doctors who take seriously that your discomfort is really physiological, a world in which the right treatment for you is elusive.

Majority of Patients With Long COVID Meet Criteria for POTS

Notably, majority of participants with PASC in this study reported mild acute COVID-19 infection and the lag in the onset of autonomic symptoms by at least two weeks from acute infection lends further support to COVID-19 as a trigger for dysautonomia.

Making Hope When the Medical System Can’t

Recent research has shown that POTS may prove to be an autoimmune disorder, a hypothesis that might lead to more treatment options. Nonetheless, the longer it takes to get a diagnosis for the real physiological problems, the longer it is before effective trial and error on treatments can begin. This is the source of massive patient frustration.

Postural Orthostatic Tachycardia Syndrome (POTS)

Postural orthostatic tachycardia syndrome (POTS) is a common form of autonomic dysregulation characterized as an excessive tachycardia upon standing in the presence of orthostatic intolerance. Current adult diagnostic criterion requires a heart rate increase of greater than or equal to 30 bpm within the initial 10 minutes of standing or head-up tilt (HUT) in the absence of orthostatic hypotension. POTS predominantly affects premenopausal females...

Postural tachycardia syndrome: multiple symptoms, but easily missed

The evolution of upright posture is usually considered an advantage in humans. For people with postural tachycardia syndrome (PoTS) it can present a daily challenge. Although orthostatic intolerance is often associated with older people, PoTS tends to affect young women who present with multiple, non-specific symptoms and significant functional impairment. PoTS was characterised in 1993, but previously existed under various names including irritable heart, soldier's heart, and idiopathic orthostatic intolerance.

POTS: Postural Orthostatic Tachycardia Syndrome https://pedemmorsels.com/pots-postural-orthostatic-tachycardia-syndrome/ One entity that may present with pre-syncope/syncope is POTS: Postural Orthostatic Tachycardia Syndrome. Let us take a moment to digest a morsel of POTS (no… not that kinda of Pot).

One entity that may present with pre-syncope/syncope is POTS: Postural Orthostatic Tachycardia Syndrome. Let us take a moment to digest a morsel of POTS (no… not that kinda of Pot).

Think Like a Doctor: Swept Off Her Feet Solved

POTS is considered a syndrome rather than a disease because it has many possible causes. It can be transient — a side effect of certain medications or a result of loss of conditioning, acute blood loss or dehydration — and in these cases it resolves when the trigger is removed. Other types of POTS are more persistent — which turned out to be the case for this patient — lasting months or years.

Your Teenager: Depressed, Anxious... or This?

I worry that there are teens who are being misdiagnosed due to a complete lack of knowledge about this easy-to-diagnose condition, and are sent to school psychiatrists to deal with “depression.” The first and most critical step will be to make sure that parents and every junior and high school administration know about POTS, and understand that it can mirror some of the most common aspects of anxiety, phobias and depression.

Resources

5 Things to Do When Symptoms Are Not ‘All in Your Head’

Missed or mistaken diagnoses occur most often for relatively new and complex conditions whose symptoms present differently from one patient to another. The diagnostic challenge associated with POTS isn’t that it’s rare, but that medical schools have only recently begun paying attention to it.

Life with POTS

My name is Lisa and this is my life with POTS (Postural Orthostatic Tachycardia Syndrome).

PoTS UK

PoTS UK was founded by a group of individuals with PoTS who had a desire to increase awareness of this condition. We now benefit from the support and guidance of a number of doctors and specialist nurses with an interest in this field.

Standing Up To POTS

Standing Up To POTS is committed to improving the quality of life for people with POTS through research, advocacy, and support.

Defying Gravity

My journey with dysautonomia.

Dysautonomia Information Network

DINET provides information and personal stories on several types of dysautonomia.

Dysautonomia International

Our Mission...to identify the causes and cures for all forms of dysautonomia and to enhance the quality-of-life of people currently living with these illnesses.

American College of Cardiology

It is the most common form of orthostatic intolerance in young people (predominantly premenopausal women). Presyncope is much more common than syncope in POTS, but it is not infrequent that POTS coexists with episodes of neurally mediated (reflex) syncope.

GARD

Postural orthostatic tachycardia syndrome (POTS) is characterized by orthostatic intolerance and a rapid increase in heart rate. People with POTS often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation. Approximately half of affected people have a small fiber neuropathy that impacts their sudomotor nerves (those that activate the sweat glands).

NHS

PoTS is diagnosed if your heart rate increases by 30 beats a minute (bpm) or more (40bpm in those aged 12 to 19) usually within 10 minutes of standing. This increase continues for more than 30 seconds and is accompanied by other symptoms of PoTS. You may have a range of tests to confirm a diagnosis and rule out other conditions...

Physiopedia

Postural Orthostatic Tachycardia Syndrome (POTS ) is described by a patient's intolerance to the change of body position from supine to an upright position - it is characterized by a dramatic and excessive increase in heart rate. POTS is theorized to be due to an autonomic dysregulation regulating blood flow and more specifically its' responsibility to control cerebral blood flow. POTS be classified as; primary or idiopathic with no known cause; secondary, which arises from a known disease or disorder.

StatPearls

The pathophysiology underlying postural orthostatic tachycardia syndrome is heterogeneous, encompassing excess sympathetic tone, impaired peripheral autonomic function, volume dysregulation, cardiovascular deconditioning, and autoimmune dysfunction.