Dysautonomia: Navigating the Journey - Martha Willis - APP Conference 2026

Less than 5%, probably 0.25% of syncope patients present with or are found to have an arrhythmia

The autonomic nervous system regulates body functions without conscious thought through three divisions: sympathetic, parasympathetic, and enteric systems

Dysautonomia affects approximately 5 million to 3 million individuals in the United States

Dysautonomia has a 4.5 to 1 female to male predominance

10 to 12% of dysautonomia patients have family members with similar symptoms

At least 33% of dysautonomia patients develop symptoms before they turn 18 years old

50% of dysautonomia patients are diagnosed in adolescence

Syncope represents 3% of all pediatric emergency visits

Up to 25% of children experience an episode of syncope by the age of 18

Quality of life for those with syncope and dysautonomia is similar to asthmatic, obese, and end-stage renal disease cohorts and much lower than healthy and diabetic patients

The disability level in dysautonomia closely matches congestive heart failure and COPD in adults

Approximately 83% of dysautonomia patients are diagnosed with anxiety disorder before being diagnosed with dysautonomia

The average time to diagnosis of dysautonomia is about 6 years

The most important part of diagnostic evaluation is a thorough and complete history

There was 96% sensitivity in identifying pediatric cardiac etiology with a positive history of exercise-induced syncope, positive family history, abnormal physical exam, and an abnormal EKG

93% of patients that present to the syncope clinic at Cincinnati Children's are diagnosed with neurocardiogenic syncope or dysautonomia

41.7% of patients diagnosed with neurocardiogenic syncope are diagnosed after a comprehensive history, physical, and orthostatic vital signs

54.8% of all syncope patients will be diagnosed with neurocardiogenic syncope after a graded exercise test, for a total of 96.5%

For neurocardiogenic pre-syncope or syncope diagnosis, an increase in heart rate of more than 40 beats per minute in adolescents and children, a fall in blood pressure of more than 20 millimeters of mercury, or greater than 20 beats per minute increase in heart rate with symptoms supports the diagnosis

For POTS diagnosis, patients must have an increased heart rate of greater than 40 beats per minute in children and adolescents within 10 minutes of standing or assuming an upright posture in the absence of orthostatic hypotension

POTS is defined as chronic symptoms of orthostatic intolerance for more than 6 months

Morning postural assessments will optimize diagnostic sensitivity for POTS

Up to 60% of children who have one syncopal event will have at least one additional episode

Research shows that 80 to 100 ounces of water daily is needed to increase blood volume, but the speaker asks patients to drink 100 to 120 ounces daily

The literature recommends 3 to 5 grams of dietary sodium daily for dysautonomia patients

Exercise has been proven to be more effective than beta blockers in dysautonomia patients

32% of syncope clinic patients met probable anxiety criteria on GAD-7 screening, leading to psychology referral

A December 2025 systematic review found that the proportion of patients with symptomatic benefit and improvement with aggressive hydration ranged from 67 to 100%

Fludrocortisone 0.02 mg every morning acts at the kidney level to hold on to sodium and fluid to increase blood volume

Midodrine recommendation is 10 mg 3 times a day, though compliance is challenging in teenagers

Midodrine tends to work better in patients that have Ehlers-Danlos syndrome

The recommendation for sleep in teens is 8.5 hours at night, with studies showing teens don't get tired until about 10:30 or 11 PM