Postural Orthostatic Tachycardia Syndrome | Knowledge is Power

Published
by Vikki Earley Vikki Earley, ADN (New)

Specializes in Managed Care, Pediatrics, Postpartum, NICU.

Learn about postural orthostatic tachycardia syndrome (POTS) and how to best support your patients living with this chronic condition.

POTS: What Nurses Need to Know

Postural Orthostatic Tachycardia Syndrome | Knowledge is Power

Postural Orthostatic Tachycardia Syndrome (POTS) is a type of dysautonomia1, in which the blood vessels do not constrict properly and the patient experiences tachycardia when shifting positions from supine or sitting to standing. POTS is not rare2 and is more prevalent than multiple sclerosis. It is estimated to affect one to three million Americans, and though it affects both sexes, 80-85% of POTS patients are females between ages 15 and 50.  The odds are high that you will encounter at least one POTS patient during your nursing career.

What to Watch for in POTS Patients: Common Symptoms of POTS

The primary defining symptom of POTS is orthostatic intolerance while standing upright, resulting in significant tachycardia. The adult patient’s heart rate increases at least 30 bpm or is greater than 120 bpm during the first 10 minutes upon standing, with an absence of orthostatic hypotension. Tachycardia is often accompanied by a cluster of other specific symptoms, which may include:

  • Chest Pain
  • SOB
  • Lightheadedness
  • GI issues3
  • Migraines
  • Peripheral vascular pooling
  • Acral cyanosis
  • Cold sweaty extremities, I.e., “clammy” hands and feet
  • Cognitive impairment, I.e., “brain fog”
  • Exercise intolerance
  • Syncope

Types of POTS

POTS is classified as primary or secondary.

Primary forms of POTS are not correlated with other diseases. Secondary forms are associated with other diseases or conditions that may have contributed to the development of POTS symptoms, such as Lyme disease, autoimmune disorders, diabetes, chemotherapy, and heavy metal poisoning.

There are 4 characteristic forms of POTS and patients may present with multiple characteristics.

  • Neuropathic – small-fiber neuropathy affects constriction of the peripheral and abdominal vessels
  • Hypovolemic – abnormally low volume of blood
  • Partial Dysautonomic – the most common primary form, characterized by excessive blood pooling in the extremities and abdomen while upright
  • Hyperadrenergic – elevated levels of norepinephrine

Causes of POTS

POTS is not a disease, but a collection of disorders with similar symptoms and is a syndrome that is not fully understood. It is thought to have many causes and therefore the underlying root cause of POTS can be difficult to determine and may not be discovered for every patient. Since approximately 40% of patients living with POTS have a relative with POTS or another type of dysautonomia, some patients have a possible genetic link.

POTS-Associated Conditions and Comorbidities

There are numerous diseases and conditions associated with POTS. The following is not an all-inclusive list, but some conditions and comorbidities associated with POTS are:

  • Amyloidosis
  • Autoimmune Diseases
  • Antiphospholipid Syndrome
  • Diabetes
  • Lupus
  • Multiple Sclerosis
  • Sjogren’s Syndrome
  • Sarcoidosis
  • Chiari Malformation
  • Genetic Disorders
  • Infections
  • Epstein Barr Virus
  • Mononucleosis
  • Lyme Disease
  • Hepatitis C
  • Ehlers Danlos Syndrome
  • Mast Cell Activation Syndrome (MCAS)

Diagnosis of POTS

Lack of awareness in the medical community and limited providers specializing in POTS can cause prolonged diagnosis for many POTS patients. The average search for a POTS diagnosis is 4 years. This delay can have a negative impact on the patient’s mental health, increase physical suffering, and create financial hardships for the patient and their family. The most common diagnostic tool used to identify POTS is the tilt table test. Additional diagnostic tools to further evaluate the functionality of the patient’s autonomic nervous system may be helpful, such as QSAT, TST, EKG, gastric motility studies, and skin nerve biopsies.

POTS Treatment Options, Prognosis, and Quality of Life    

Although a small percentage of adolescent patients have reported recovery, POTS is a chronic condition for the majority. POTS can present as mild, moderate, or severe and 25% of POTS patients struggle to perform ADLs, attend school or work, and participate in social events. Some physicians and researchers have compared these functional limitations as equivalent to the functional limitations of patients with COPD or CHF. There is no cure and there are no FDA-approved medications for POTS, but it can be managed with a combination of multiple therapies, off-label use of pharmaceuticals, and lifestyle changes. A team of POTS-knowledgeable providers is optimal to provide an adequate treatment plan and management. Treatment plans may include:

  • Lying down
  • Compression stockings with at least 30 mm HG ankle counterpressure
  • Abdominal compression wear
  • Increased salt intake to 3 – 10 grams per day (except in hyperadrenergic form)
  • Increased non-caffeinated fluid intake to 2-3 liters per day
  • Physical reconditioning using reclined exercises (rowing, swimming, recumbent bicycling)
  • Healthy diet
  • Elevating the head of bed
  • Medications used off-label to improve conditions enough for exercise reconditioning such as:
  • Alpha-adrenergic agonists 
  • ACE-inhibitors
  • Beta-blockers
  • Calcium channel blockers
  • Diuretics
  • EPO
  • Ganglionic blocking agents
  • MAOIs
  • TCAs
  • SSRIs
  • SNRIs

How Nurses Can Support POTS Patients

Many POTS patients have spent years trying to obtain a proper diagnosis and may have developed a mistrust of the medical system as a result. Unfortunately, providers have often incorrectly diagnosed POTS symptoms as stemming from an anxiety disorder. Although many patients with chronic illnesses like POTS may suffer from anxiety and depression, these are not causes of POTS. Approach POTS patients with an open mind and a listening ear to learn how you can best support the patient. Connect the patient with online and local resources. Educate the family members and caregivers about POTS and how they can best support their loved ones. 

Additional Resources

Visit these patient resources to learn more.

Dysautonomia International4 is a non-profit that helps people living with dysautonomia, including POTS.

The Spoonie Struggle5 is a podcast hosted by a neuropsychologist who also has POTS.  Read about one nurse's struggle living with POTS6.

References

1. NIH Dysautonomia: What research is being done?

2. Johns Hopkins Medicine: Postural Orthostatic Tachycardia Syndrome (POTS)

3. Gastrointestinal Symptoms in Postural Tachycardia Syndrome: a Systematic Review

4. Dysautonomia International: For Patients

5. The Spoonie Struggle: Let's Talk About Postural Orthostatic Tachycardia Syndrome

6. The Mighty: I'm a Chronically Ill Nurse.   Here's What I Want Others to Remember During Nurses Week

Dysautonomia International: 10 Facts About POTS: Orthostatic Tachycardia Syndrome

AHA Journals: Postural Tachycardia Syndrome

Vikki Earley, RN is a nurse writer, freelance copywriter, and children’s book author. She is the owner and founder of Healthcare Writer Solutions and she has a background in pediatrics, NICU, clinical quality, nurse consulting, and Medicaid Managed Care. Currently, she cares for her adult daughter who is living with POTS.

2 Articles   1 Post

Share this post


Link to post
Share on other sites