Dysphagia Symptoms in Patients with Postural Orthostatic Tachycardia Syndrome (POTS): A Qualitative Study
Abstract
1. Introduction
2. Materials and Methods
2.1. Study Participants
2.2. Procedures
3. Results
3.1. Data Analysis
- a.
- How do individuals with POTS-associated dysphagia perceive their overall physical and mental health?
- b.
- Which dysphagia symptoms are most frequently reported in this population?
3.2. Participant Characteristics
3.3. Dysphagia Symptom Profiles
3.4. Themes
3.4.1. Negative Physical Impact of Dysphagia
3.4.2. Negative Psychological Impact of Dysphagia
3.4.3. Impact on Daily Life and Relationships
- a.
- Negative Social Impact
- b.
- Positive Coping Mechanisms
3.5. Healthcare Satisfaction
3.5.1. Negative Experiences
3.5.2. Positive Provider Relationships
4. Discussion
4.1. Routine Dysphagia Screening
4.2. Interdisciplinary Care Models
4.3. Recognition of Intermittent Symptoms
4.4. Mental Health Integration
4.5. Patient-Reported Outcome Measures
4.6. Limitations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Abbreviations
| EBV | Epstein–Barr Virus |
| FD | Familial Dysautonomia |
| FEES | Fiberoptic Endoscopic Evaluation of Swallowing |
| GERD | Gastroesophageal Reflux Disease |
| hEDS | Hypermobile Ehlers–Danlos Syndrome |
| MBS | Modified Barium Swallow |
| MCTD | Mixed Connective Tissue Disease |
| ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome |
| MG | Myasthenia Gravis |
| MSA | Multiple System Atrophy |
| OH | Orthostatic Hypotension |
| POTS | Postural Orthostatic Tachycardia Syndrome |
| SFN | Small-Fiber Neuropathy |
| SPS | Stiff Person Syndrome |
| vEDS | Vascular Ehlers–Danlos Syndrome |
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| System | Clinical Features | Pathophysiology |
|---|---|---|
| Cardiovascular | Tachycardia, palpitations, syncope, lightheadedness, exercise intolerance | Impaired autonomic regulation of blood pressure and heart rate in response to postural changes, hypovolemia, preload failure |
| Neurologic | Migraine, cognitive symptoms (“brain fog”), dizziness, small-fiber neuropathy, sleep disturbances, fatigue | Cerebral hypoperfusion, sympathetic overactivity, parasympathetic underactivity, aberrant central autonomic networks, autoimmunity, neuroinflammation |
| Gastrointestinal | Acid reflux, dysphagia, bloating, nausea, gastroparesis or rapid gastric emptying, constipation, diarrhea, food sensitivities | Autonomic dysregulation results in impaired coordination of gastrointestinal tract motility, autoimmunity, mast cell hyperactivity |
| Thermoregulatory | Excessive sweating or inability to sweat, heat/cold intolerance, low-grade fevers | Impaired autonomic thermoregulatory control results in difficulty maintaining stable core temperature, smallfiber neuropathy, hyperadrenergic state |
| Genitourinary | Urinary frequency, urinary urgency, nocturia, incomplete bladder emptying, dysuria, pelvic floor dysfunction | Impaired autonomic regulation of bladder and urethral contractility and pelvic muscle tone |
| Participant | Age | Sex | Dysautonomia Diagnosis | Age of Diagnosis | DHI Score | Comorbidities | Medications |
|---|---|---|---|---|---|---|---|
| 1 | 42 | Female | POTS ME/CFS | 39 | 4 | Suspected hEDS | Ivabradine Pyridostigmine |
| 2 | 21 | Female | POTS | 19 | 6 | vEDS | None |
| 3 | 44 | Male | POTS Vasovagal syncope | 42 | 4 | hEDS GERD Gastroparesis Lupus Sjögren’s MG | None |
| 4 | 35 | Female | POTS | 35 | 6 | EDS Dysphagia MCAS Post-exertional malaise | None |
| 5 | 65 | Male | POTS SFN | 62 | 2 | Spasmodic dysphonia | Baclofen Pyridostigmine Bromide Tromethamine |
| 6 | 52 | Male | POTS SFN | 47 | 6 | hEDS Chiari malformation GERD Arthritis | Percocet Tizanidine Lorazepam (as needed) |
| 7 | 41 | Female | POTS | 31 | 5 | hEDS MCAS Gastroparesis Esophageal dysmotility GERD Reynaud’s disease Primary immune deficiency Trigeminal neuralgia EBV SPS | Baclofen Cromolyn Diazepam Propranolol Topiramate Tagamet Vonoprazan Montelukast Cetirizine Rosuvastatin Levothyroxine Carbamazepine Albuterol (as needed) SCIG |
| 8 | 57 | Female | POTS SFN | 54 | 4 | hEDS Sjögren’s syndrome Endometriosis PVCs and PACs Trigeminal neuralgia MCAS, Esophageal dysmotility GERD | Cyclosporine eye drops Pindolol Cevimaline Aformoterol Loteprednol Budesonide Dextro- amphetamine |
| 9 | 36 | Female | POTS SFN | 35 | 4 | hEDS MCAS GERD MCTD Dysphagia | Pyridostigmine |
| 10 | 44 | Female | POTS | 40 | 4 | Esophageal dysmotility Gastroparesis GERD Reynaud’s disease May–Thurner syndrome Achalasia Dysphagia | None |
| 11 | 71 | Female | POTS | 69 | 5 | Rheumatoid arthritis Gastroparesis | None |
| Themes | Descriptions | Representative Codes | Example Quotations |
|---|---|---|---|
| Negative Physical Impact of Dysphagia | The physical symptoms and health consequences associated with dysphagia, including choking, difficulty swallowing, and related health risks. | Physical distress, aspiration risk | “My throat is closing up and I can’t swallow and I’m choking.” |
| “I choke on saliva.” | |||
| “I can’t get my tongue and throat to work together and then I can’t clear it (food) out of my throat.” | |||
| Inconsistent swallowing | “Like I could be fine today and not fine tomorrow.” | ||
| “It (swallowing problem) is baffling; it comes out of nowhere.” | |||
| Nutritional deficiency | “My hair is falling out a lot. I can see patches of scalp.” | ||
| “I am malnourished. My muscle mass is low and I have no energy.” | |||
| “I’m weaker. I can’t do as much; it wipes you out.” | |||
| Negative Psychological Impact of Dysphagia | The emotional effects of dysphagia, including anxiety, feelings of isolation, and decreased self-esteem. | Emotional burden, anxiety | “It’s brutal being terrified to swallow.” |
| “Every single time I swallow, I’m scared.” | |||
| “I can’t be independent.” | |||
| Feelings of depression | “Depression that just is right there, waiting to suck you in.” | ||
| “I wish I were dead.” a | |||
| Impact on Daily Life and Relationships | The effects of dysphagia on social interactions, relationships, and daily routines, including both negative social impacts and positive coping mechanisms. | Social withdrawal | “I accommodate all the time, all day, every day.” |
| “I don’t go to events.” | |||
| “I have lost contact with several friends.” | |||
| Positive community engagement | “I’m going to find the people that are struggling and help them.” | ||
| Healthcare Satisfaction | The level of satisfaction with healthcare experiences, encompassing both negative experiences with providers and positive relationships that facilitate care. | Provider dismissal | “I’d like to find someone who could give some answers.” |
| “Providers need to understand the umbrella of a syndrome; that it requires holistic (not fragmented) management of symptoms.” | |||
| “I was accused of attention-seeking.” | |||
| “Pain and suffering need to be validated.” | |||
| Supportive provider relationships | “I have actually a very good EDS doctor who I feel supported by.” |
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Zimmermann, S.; Blitshteyn, S. Dysphagia Symptoms in Patients with Postural Orthostatic Tachycardia Syndrome (POTS): A Qualitative Study. Neurol. Int. 2026, 18, 44. https://doi.org/10.3390/neurolint18030044
Zimmermann S, Blitshteyn S. Dysphagia Symptoms in Patients with Postural Orthostatic Tachycardia Syndrome (POTS): A Qualitative Study. Neurology International. 2026; 18(3):44. https://doi.org/10.3390/neurolint18030044
Chicago/Turabian StyleZimmermann, Sherry, and Svetlana Blitshteyn. 2026. "Dysphagia Symptoms in Patients with Postural Orthostatic Tachycardia Syndrome (POTS): A Qualitative Study" Neurology International 18, no. 3: 44. https://doi.org/10.3390/neurolint18030044
APA StyleZimmermann, S., & Blitshteyn, S. (2026). Dysphagia Symptoms in Patients with Postural Orthostatic Tachycardia Syndrome (POTS): A Qualitative Study. Neurology International, 18(3), 44. https://doi.org/10.3390/neurolint18030044
