The A85 Cure Foundation

The A85 Cure Foundation (A85 Cure) , is dedicated to funding advancements in research and advocacy to cure Postural Orthostatic Tachycardia Syndrome (P.O.T.S.).

Email: info@a85cure.org

Phone: 630.480.0428

Registered Charity: 81-3292469

Headquarters: 913 W. Liberty Drive Wheaton, Illinois  60187

Satellite: P.O. Box 2077 Mississippi State,MS 39762

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What is P.O.T.S.

If you’re like many people, you’ve never heard of Postural Orthostatic Tachycardia Syndrome or P.O.T.S. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The ans control's the body's automatic functions.

 

 

These functions include heart rate, blood pressure, body temperature, respiration and digestion.

A person with P.O.T.S. may suffer from: fainting, with and without seizure like activity, extreme fatigue, migraines, tremors, nausea, insomnia and heat intolerance.

A person with P.O.T.S. has an elevated heart rate (tachycardia) upon standing (orthostatic intolerance), causing dizziness and palpitations.

Yet it affects as many as 3 million globally – more than Multiple Sclerosis and Parkinson’s disease combined.

 

P.O.T.S. is a condition of the autonomic nervous system, which automatically controls our heart rate, blood pressure, breathing, body temperature and digestion.

 

P.O.T.S. belongs to a group of conditions known as dysautonomia, but because many P.O.T.S. symptoms are heart-related, most cases are diagnosed by heart specialists (cardiologists).

 

Most P.O.T.S. sufferers are women. Though P.O.T.S. can affect people of all ages, races and genders, 80% of cases occur in women aged 15 to 50.

 

The name – Postural Orthostatic Tachycardia Syndrome – reflects the symptoms most P.O.T.S. sufferers live with every day.

When someone with P.O.T.S. stands up after sitting or lying down …

 

  • A person’s heart rate rises sharply, going up by at least 30 beats per minute or reaching 120 beats per minute within 10 minutes of standing.

 

  • A person may feel dizzy and experience heart palpitations.

 

  • A person may faint. In fact, it may appear as if they having a seizure.

 

  • A person may feel nauseated, weak, and hot or cold all over.

 

  • At different times they may also suffer from tremors, migraine headaches, insomnia, abdominal pain, extreme fatigue, trouble concentrating and other debilitating issues.

 
A study of 900 P.O.T.S. sufferers gives a complete list of symptoms and shows which are most common.

 

What makes P.O.T.S. difficult to understand and diagnose?

 

It’s a relatively new diagnosis. While the syndrome was first described in the 1940’s, the diagnosis did not begin to grain ground until doctors at Mayo Clinic began to discuss and write about it in the early 1990s.

 

No two people have the same symptoms. A P.O.T.S. patient may be in good overall health aside from her symptoms, which often come and go. Cases can be mild, moderate or severe. Some patients improve with treatment; but 25% are so sick they cannot work or attend school. 

 

We don’t know the true cause. P.O.T.S. has been linked with a long list of medical conditions, including Epstein-Barr virus (mononucleosis), Ehlers-Danlos Syndrome, Lyme disease, adrenal disorders, anemia and tumors. P.O.T.S. is often accompanied by joint hypermobility, where patients are described as “double-jointed”. Some people develop P.O.T.S. after repeated brain trauma or concussions. While all these relationships provide some clues, we still don’t have a clear picture of how P.O.T.S. develops.

 

1 in 4 people with P.O.T.S. are so impaired that they can’t attend school or work.
 
 

Why do so many patients wait for months, even years before finding real answers?

The difficulty in diagnosing P.O.T.S. creates real problems for patients and loved ones, as A85 Cure founder Amanda found out during her year-plus of medical tests.

 

P.O.T.S. is often mistaken for psychological issues. Doctors may believe they are seeing anxiety, panic attacks or depression when patients first come to them. One study shows that 78% of P.O.T.S. patients were initially told they were most likely facing a psychological, not a physical, issue.

 

Even when a physical cause is suspected, a different diagnosis is usually given at first. In total, an amazing 85% of all P.O.T.S. sufferers are initially diagnosed with something else.


More than 1/3 of all patients have symptoms for 6 months to 2 years before getting the right diagnosis. Another 1/3 suffer for 5 or more years before the correct diagnosis is made.

 

 

 

 

 

 

  • The ans control's the body's automatic functions.
  • These functions include heart rate, blood pressure, body temperature, respiration and digestion.
  • A person with P.O.T.S. may suffer from fainting, with and without seizure-like activity, extreme fatigue, migraines, tremors, nausea, insomnia, and heat intolerance.
  • A person with P.O.T.S. may suffer from: fainting, with and without seizure-like activity, extreme fatigue, migraines, tremors, nausea, insomnia and heat intolerance.