POTS is a type of Dysautonomia or Autonomic Dysfunction. It’s estimated that 1/3 of patients with POTS have EDS. Both POTS and Dysautonomia are comorbid with Mast Cell Activation Syndrome (MCAS), Amyloidosis, Sarcoidosis, Diabetes (Type 1 & 2), Ehlers-Danlos syndrome, deconditioning and more.

There seems to be an underlying link especially for those of us who have these several of these conditions in our families — which is why awareness and proper diagnosis is critical. October is Dysautonomia awareness month, and today, there’s a charity ride at Zengo Cycle in Bethesda benefiting Dysautonomia International – one of my favorite organizations, other than EDS Wellness. There’re a few more bike seats left! Join us!

“On Sunday October 16th from 1pm-2pm, I will be hosting (NOT teaching!) a charity spin class at Zengo Cycle in Bethesda for the THIRD year in a row! All proceeds from the event will benefit Dysautonomia International’s POTS research fund.

Dysautonomia International is a non-profit committed to enriching the lives of people who live with various forms of dysautonomia, such as myself and members of my family. They are committed to raising awareness of these disorders, providing advocacy and educating physicians through continuing education. To date, Dysautonomia International has donated just under $500,000 in research grants to the world’s leading dysautonomia doctors and researchers – and every penny raised is put into this fund.

For just $35, you will be registered for an incredible spin class which includes a free bottle of smart water as well as shoe rental for the class. And, of course, the knowledge you’re working towards helping to make the lives better of so many dysautonomia patients who struggle with daily symptoms. We need research and each and every dollar raised in this class, combined with other fundraisers and donations, will get us closer to funding another research study. The class will be comprised of my friends, family, POTS patients and their families. It’s a relaxed, fun environment that will guarantee you a great workout! ALL fitness levels welcome!”

To register for the event and to learn more about Zengo, please click here: http://www.zengocycle.com/serve/index.cfm?action=Workshop.events#events23062. Or, go to www.zengocycle.com to sign-up!

To learn more about POTS and other autonomic disorders, please click here: http://dysautonomiainternational.org, or click on ’10 facts about POTS.’

The above information is reposted with permission from Elyse Schwartz.

Additional POTS and Dysautonomia links and resources:

What is Dysautonomia?

Short Video – ‘What is POTS?’ by Dysautonomia International

Small-fiber Polyneuropathy and Diagnostic Value of Blood Tests

‘What is POTS and Why Haven’t More People Heard of It’ – read below.

The condition, often misdiagnosed as anxiety, can be debilitating and demoralizing.

One summer morning in 2009, Michael Blaney woke up in a new body. At least, that’s how it felt. The rising college senior had gone to bed a long-distance runner who was healthy outside of frequent migraines and awoke a disoriented, exhausted young man who felt nauseous after just 15 minutes at the gym. “That was the day everything changed in my life,” recalls Blaney, now a 28-year-old graphic designer in Chicago.

Blaney, now a 28-year-old graphic designer in Chicago.

It took more than three years, countless visits to medical specialists, five ineffective medications and one year off school before Blaney learned the name of his condition: Postural Orthostatic Tachycardia Syndrome, or POTS. “It was basically the first time [I’d heard of it,]” he says.

It took more than three years, countless visits to medical specialists, five ineffective medications and one year off school before Blaney learned the name of his condition: Postural Orthostatic Tachycardia Syndrome, or POTS. “It was basically the first time [I’d heard of it,]” he says.

Many people still haven’t. The reasons are understandable: The chronic condition – in which the autonomic nervous system sends faulty signals to blood vessels, causing them to transport blood to the wrong places at the wrong times – manifests for unknown reasons and differently in everyone, and is readily misdiagnosed as anxiety or exhaustion. “One of the problems is that it’s a bit nebulous,” says Dr. Satish Raj, associate professor of cardiac sciences at the University of Calgary in Canada, where he studies POTS and treats people with the condition.

The hallmark feature, however, is a sharp rise in heart rate upon standing, which causes people with POTS to often feel dizzy, faint, disoriented and nauseous when they get up. “It really isn’t a big task in healthy people to stand up, but in people with POTS, these mechanisms are not functioning appropriately,” explains Dr. Svetlana Blitshteyn, clinical assistant professor of neurology at the University of Buffalo School of Medicine and Biomedical Sciences, where she directs the Dysautonomia Clinic.”

Link to full article – http://health.usnews.com/health-news/patient-advice/articles/2016-08-01/what-is-pots-and-why-havent-more-people-heard-of-it

‘Autonomic Dysregulation’ – read an excerpt from Mitoaction.org below.

An under-appreciated aspect of mitochondrial disease is the autonomic dysfunction (Zelnik, 1996; Axelrod, 2006) which can impact life on a daily basis. Patients often have some dysregulation of temperature, in which the baseline body temperature often measures in the 96s and 97s and sometimes lower; temperatures can drop even lower during the night. Less often, temperature values at baseline run higher than normal. This is a particularly important piece of information when assessing a mitochondrial patient who is sick with infectious symptoms. An apparent “low-grade” temperature of 100°F may be dismissed by an unknowing pediatric practice as being insignificant. However, if the patient’s baseline temperature runs at 96°, such an impression may represent a mistaken conclusion.

Autonomic issues include the following, and may present or worsen together with significant trigger factors such as heat or excessive activity, inadequate calorie or fluid intake, or with generalized fatigue:

Vascular dysautonomia with lability in heart rate and blood pressure. This can occur with orthostatic changes in position, but symptoms can also occur following exercise or activity, in temperatures that are too extreme, or sometimes for no apparent reason at all. Associated symptoms can include dizziness or lightheadedness, syncope, palpitations or irregular heart rate, dyspnea, and anxiety.

Heat and cold intolerance. Heat intolerance is not uncommon and may be associated with fatigue, lethargy, irritability, and usually flushing or blotching although some may display pallor or mottling. Cold intolerance is not as common a problem but can be associated with a worsening of fatigue or muscle pain. Some show color changes akin to Raynaud syndrome; in some cases, the color changes can be associated with pain or peeling of the skin.

This intolerance of temperature extremes resembles a “cold-blooded state” in which a person is dependent on a satisfactory ambient temperature to remain comfortable.

Inappropriate sweating. Patients may not sweat even in hot weather (which contributes to heat intolerance). Instead their skin might only become “clammy.” However, some of these patients might instead sweat in inappropriate settings – in cold temperatures or at night in comfortable conditions. Excessive sweating may be an important factor when considering a patient’s fluid requirement.

Skin temperature variability. Patients may complain of feeling very hot or very cold. This self-impression (like the patient’s body temperature) may not correlate with the way their skin feels to the touch.

Pallor, flushing or blotching, mottling of the skin. These changes can occur in association with temperature changes (heat or cold), activity, emotional distress, infection, and general fatigue; however, they can also occur spontaneously without any particular triggering factor. Raynaud syndrome-like changes may occur especially with temperature changes (usually cold), as well as erythromelalgia-like penomena with the appearance on the fingers and hands of painful, red lesions that are hot to the touch. It is postulated that erythromelalgia may represent a feature of vasomotor instability (Davis, 2002).

Autonomic issues of the gut and bladder. The gut and bladder can show evidence of dysfunction, with bowel dysmotility more common, manifesting with any combination of esophageal dysmotility, gastroesophageal reflux, delayed gastric emptying, and constipation. Symptoms include anorexia, early satiety, pain and distension after eating, and difficulty passing bowel movements even when the stools are soft in texture (though may be large in volume). Bladder dysfunction may be associated with urinary retention, incomplete emptying and “double-voiding,” urgency and frequency, incontinence, and when severe, vesicoureteral reflux and/or urinary tract infections. These issues at least in part are due to autonomic dysregulation.”

Link to full article – http://www.mitoaction.org/guide/autonomic-dysregulation