19-Year-Old Female with POTS/Dysautonomia: Challenges in Emergency Care Recognition

Case at a Glance

A 19-year-old female with diagnosed POTS/dysautonomia presents recurrent episodes requiring emergency department visits for IV fluid therapy, highlighting gaps in healthcare provider awareness of this condition.

Patient's Story

The patient was diagnosed with POTS/dysautonomia approximately one year ago following extensive cardiac evaluation. Her presentation includes consistent tachycardia, dramatic blood pressure fluctuations, shortness of breath, lightheadedness, and dizziness. Notably, she has never experienced complete syncope due to medications that help maintain her blood pressure. The patient reports that minor activities, such as walking in warm weather, can trigger severe symptom exacerbation requiring emergency intervention. She also has comorbid autism spectrum disorder, which affects her ability to interpret bodily cues for hunger and thirst, contributing to hydration challenges.

Initial Assessment

The patient frequently presents to emergency departments and urgent care centers with symptoms including severe nausea, headache, shortness of breath, dizziness, heart palpitations, tachycardia, joint pain, and body aches. Physical examination typically reveals variable blood pressure readings and orthostatic vital sign changes. She experiences pre-syncope when standing for more than 20 seconds and has difficulty maintaining oral intake due to nausea.

The Diagnostic Journey

Initial workup in emergency settings consistently includes comprehensive metabolic panel, complete blood count, urinalysis, and electrocardiogram, which typically return normal results. The patient's symptoms dramatically improve following IV fluid administration, supporting the clinical suspicion of volume depletion exacerbating her underlying dysautonomia. However, many healthcare providers express unfamiliarity with POTS/dysautonomia, leading to diagnostic uncertainty and occasionally inappropriate skepticism regarding her condition.

Final Diagnosis

Primary: POTS/Dysautonomia with recurrent episodes of volume depletion. Secondary: Autism spectrum disorder affecting interoceptive awareness. The patient is being evaluated for possible Ehlers-Danlos syndrome given associated joint pain and connective tissue concerns.

Treatment Plan

Acute management includes IV normal saline administration, typically one liter, which provides significant symptom relief. The patient has established care with cardiology and is being referred to Johns Hopkins for specialized POTS evaluation. Chronic management strategies include increased salt and fluid intake, compression garments, and medications to support blood pressure regulation. Patient education materials regarding POTS are being prepared for emergency department visits.

Outcome and Follow-up

The patient responds well to IV fluid therapy with resolution of acute symptoms, though baseline tachycardia and joint pain persist. She continues to require periodic emergency department visits for fluid resuscitation when oral hydration proves insufficient. Long-term prognosis depends on optimal medical management and lifestyle modifications. Healthcare provider education regarding POTS recognition and management remains an ongoing challenge affecting her care quality.