Living with Dysautonomia: POTS, Vasovagal Syncope & IST

Living with Dysautonomia: What POTS, Vasovagal Syncope, and Inappropriate Sinus Tachycardia Have in Common — And Why Your Mental Health Matters Too

Dysautonomia refers to dysfunction of the autonomic nervous system which is the part of your body that runs heart rate, blood pressure, digestion, temperature regulation, and more without you ever having to think about it. When that system misfires, the ripple effects touch nearly everything: your body, your daily routine, your relationships, and your mental health.

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As a counselor who lives with chronic illness myself, I wanted to put together a clear, well-researched guide to three of the most common dysautonomia diagnoses and what the research actually says about how these conditions affect friendships, functioning, long-term health, and work. Then we'll talk about where therapy fits into the picture.

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What Is Dysautonomia?

Dysautonomia is an umbrella term and not a single diagnosis. It describes any condition where the autonomic nervous system doesn't regulate the body the way it should. POTS, vasovagal syncope, and IST are three of the most frequently diagnosed forms, and they often overlap with each other and with conditions like hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome, and Long COVID.

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Diagnostic Criteria: How These Conditions Are Actually Identified

Getting a diagnosis is often the hardest part of this journey. Many patients see multiple providers over years before anyone puts a name to what they're experiencing. Here's what the current clinical criteria actually look like.

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Postural Orthostatic Tachycardia Syndrome (POTS)

POTS is diagnosed when a person's heart rate increases by at least 30 beats per minute (or rises above 120 bpm) within the first 10 minutes of standing, without a corresponding drop in blood pressure that would indicate orthostatic hypotension. In adolescents ages 12–19, the threshold is a bit higher (an increase of at least 40 bpm) because teenagers naturally run higher resting heart rates than adults.

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This heart rate change has to happen alongside chronic symptoms of orthostatic intolerance that get worse when upright and improve when lying down, and those symptoms need to have been present for at least three months.

 

Diagnosis is typically confirmed with a tilt table test or a simpler bedside "active stand test," where heart rate and blood pressure are checked while lying down and then again at intervals after standing.Common accompanying symptoms include lightheadedness, palpitations, exercise intolerance, fatigue, brain fog, nausea, and headaches.

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Vasovagal Syncope

Vasovagal syncope (sometimes called neurocardiogenic syncope) is the most common cause of fainting. Unlike POTS, where the heart rate climbs and stays up, vasovagal syncope involves a sudden drop in heart rate, blood pressure, or both, that leads to a brief loss of consciousness. During tilt table testing, the drop typically doesn't begin until several minutes after standing, and then it accelerates quickly (the person faints, lies back down, and the blood pressure recovers).

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Diagnosis relies heavily on a detailed clinical history (a classic story of fainting triggered by prolonged standing, heat, pain, or emotional stress, often preceded by warning signs like nausea, tunnel vision, or sweating) combined with tilt table testing when the diagnosis is unclear. Because the hemodynamic patterns can look different from patient to patient, clinicians often distinguish between a "cardioinhibitory" type (heart rate drops), a "vasodepressor" type (blood pressure drops), and a mixed type.

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Inappropriate Sinus Tachycardia (IST)

IST is defined as a resting heart rate over 100 beats per minute, or a heart rate that jumps to 100 bpm or higher with only minimal exertion, along with a mean 24-hour heart rate above 90 bpm on ambulatory monitoring all without an identifiable underlying cause. Because there's no single confirmatory test, IST is considered a diagnosis of exclusion: providers first have to rule out things like anemia, thyroid dysfunction, infection, dehydration, medication effects, and other arrhythmias before landing on IST as the explanation for a racing heart.

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Symptoms often include palpitations that feel disproportionate to activity level, chest discomfort, fatigue, dizziness, and near-fainting.

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Why the Overlap Matters

These three conditions can and do coexist, and it's common for a person to be evaluated for one before another is identified. All three share a frustrating pattern: subjective, disruptive symptoms that don't always show up clearly on standard testing, which brings us to the next part of this conversation: what happens when a very real physical condition is repeatedly dismissed, minimized, or misread as "just anxiety."

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The Hidden Toll: What Research Says About Dysautonomia and Daily Life

 

Relationships and Friendships

Chronic illness changes the shape of a person's social world. A conceptual review on friendship and chronic illness describes how maintaining close relationships becomes genuinely harder when a condition is ongoing: not just because of physical limitations, but because of the emotional labor of deciding how much to disclose, when to cancel plans, and how to manage the gap between how a person looks and how they actually feel. Loneliness in this context isn't only about being physically alone; it's often about the felt absence of being truly understood by the people around you.

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Broader research on social isolation in chronic illness backs this up, describing how factors like fatigue, unpredictable symptoms, stigma, and grief over a changed life can gradually erode a person's social network, which in turn worsens mental health, self-care, and even how often someone seeks medical care when they need it.

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Health psychologists who work with chronically ill patients frequently hear a familiar story: friends stop reaching out over time, not out of malice, but because they don't know what to say or worry about being a burden by asking. Patients, in turn, often stop mentioning their symptoms because they fear "wearing out" the people they love which only deepens the isolation.

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Overall Functioning and Quality of Life

Functional impact is well documented across dysautonomia research. A retrospective cross-sectional study of adult POTS patients found meaningful associations between reduced functional capacity on exercise testing and lower quality of life. Pediatric research examining youth with autonomic dysfunction similarly found high symptom burden, elevated rates of pain and disordered eating, and reduced quality-of-life scores compared to healthy peers alongside high rates of co-occurring anxiety, depression, and ADHD.

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A comparative study of POTS versus vasovagal syncope patients found that both groups reported reduced health-related quality of life relative to the general population, with mobility, usual activities, and pain/discomfort domains notably affected. Cognitive symptoms compound the picture: research on POTS patients has documented measurable impairments in attention and short-term memory alongside elevated depression and anxiety sensitivity.

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Long-Term Health Outcomes

One of the more sobering findings comes from a large Long-Term POTS Outcomes Survey published in the Journal of the American Heart Association. Before receiving a POTS diagnosis, nearly two-thirds of patients had been told they had a psychological or psychiatric disorder, and more than half reported being told their symptoms were "all in their head." Even after diagnosis, roughly half of patients said they were still sometimes told their condition wasn't real or was psychological in origin.

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This pattern of misdiagnosis and dismissal has real downstream consequences. Diagnostic delay is common with patients frequently cycle through emergency rooms and specialists for years before receiving an accurate diagnosis The delay in diagnosis and treatment is associated with prolonged suffering, unnecessary testing, and erosion of trust in the medical system. Longitudinal work on anxiety and depression more broadly shows that the co-occurrence of both conditions is associated with worse overall functioning and quality of life over time, which is particularly relevant given how frequently anxiety, depression, and dysautonomia diagnoses travel together.

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Workplace Dynamics

Work is one of the domains hit hardest by dysautonomia. Survey data cited by patient advocacy organizations indicates that a substantial share of people with POTS are unable to maintain employment because of their symptoms, and many others describe needing significant workplace accommodations just to stay employed. Symptoms like orthostatic intolerance, fatigue, temperature dysregulation, and cognitive impairment don't pause for a workday, and jobs that require prolonged standing, rigid schedules, or sustained concentration can become very difficult to sustain.

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Research on other chronic illnesses shows a similar pattern: a qualitative study of workers with systemic lupus erythematosus found that physical demands, stigma around disclosing illness, and the availability (or absence) of workplace accommodations all shaped whether someone could stay in the workforce. The common thread across chronic illness and employment research is that flexibility, personal control over one's schedule, and a workplace culture that doesn't punish disclosure make a measurable difference in whether someone can sustain meaningful work.

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Where Counseling Fits Into the Picture

None of this research is meant to be discouraging - it's meant to validate what so many people with dysautonomia already know. This is hard, it's not "just in your head," and the impact on your life is real and well documented. It's also a window into where support can actually help.

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Psychological interventions have a solid evidence base for people managing chronic physical illness. Cognitive-behavioral therapy (CBT) has been shown to improve anxiety, depression, and even physiological outcomes like glycemic control across a range of chronic conditions, and researchers studying POTS specifically have noted that psychological interventions may support both emotional coping and the ability to stick with other treatments.

 

Acceptance and Commitment Therapy (ACT) has a strong track record in chronic pain populations, showing consistent improvements not just in mood but in day-to-day functioning b helping people re-engage in valued activities even when symptoms are still present. Meta-analytic reviews of digital and in-person CBT for chronic disease consistently find that positive psychological adjustment reduces psychiatric comorbidity and improves quality of life.

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For someone living with POTS, vasovagal syncope, or IST, therapy isn't about fixing your heart rate. It's about:

• Processing the grief and identity shifts that come with a body that no longer works the way it used to

• Untangling anxiety from autonomic symptoms and learn to tell the difference between a panic response and a genuine physiological event, without dismissing either one

• Building a toolkit for pacing and boundary-setting so you can protect your energy without isolating yourself

• Repairing and maintaining relationships strained by chronic illness, including learning how to communicate needs to partners, family, and friends

• Navigating medical trauma left behind by years of being disbelieved, misdiagnosed, or told your symptoms were psychosomatic

• Advocating for yourself at work, with insurers, and in medical settings, from a place of confidence rather than exhaustion

 

You Deserve Support That Understands the Whole Picture

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If you're managing POTS, vasovagal syncope, IST, or another form of dysautonomia, you don't have to sort out the mental and emotional weight of it alone. I'm Caroline Rowlader, a licensed professional counselor offering online therapy across Georgia and Tennessee including Chattanooga, Nashville, Atlanta, Knoxville, and Memphis and I bring both clinical training and lived experience with chronic illness to this work. I help clients navigate the intersection of chronic illness and mental health, including the diagnostic runaround, the strain on relationships, and the exhaustion of managing a body that doesn't follow the rules.

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If you're ready to talk through what you're carrying, schedule an appointment online - telehealth sessions are available so you can show up from wherever your body needs you to be that day.

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References

- Dysautonomia International. Postural Orthostatic Tachycardia Syndrome: Diagnostic Criteria. dysautonomiainternational.org
- Dysautonomia International. Inappropriate Sinus Tachycardia Summary. dysautonomiainternational.org
- Sheldon, R.S., et al. (2015). Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of Postural Tachycardia Syndrome, Inappropriate Sinus Tachycardia, and Vasovagal Syncope. *Heart Rhythm*.
- Brignole, M., et al. (2018). ESC Guidelines for the Diagnosis and Management of Syncope. *European Heart Journal*.
- Olshansky, B., et al. Inappropriate Sinus Tachycardia: Etiology, Pathophysiology, and Management. *JACC*.
- Sheldon, R.S., et al. Inappropriate sinus tachycardia: an examination of existing definitions. *PubMed*.
- Vaughan, C.P., et al. Psychosocial profiles of autonomic dysfunction. *Autonomic Neuroscience: Basic and Clinical*.
- Functional capacity and quality of life in the postural tachycardia syndrome: A retrospective cross-sectional study. *PMC*.
- Hall, J., Bourne, K.M., Sheldon, R.S., et al. (2021). A comparison of health-related quality of life in autonomic disorders: postural tachycardia syndrome versus vasovagal syncope. *Clinical Autonomic Research*.
- Anderson, J.W., Lambert, E.A., Sari, C.I., et al. (2014). Cognitive function, health-related quality of life, and symptoms of depression and anxiety sensitivity are impaired in patients with POTS. *Frontiers in Physiology*.
- Long-Term POTS Outcomes Survey: Diagnosis, Therapy, and Clinical Outcomes. *Journal of the American Heart Association*.
- Friendship, connectedness and (in)authenticity for those with chronic illness. *Social Sciences & Humanities Open* / ScienceDirect.
- A Middle-Range Theory of Social Isolation in Chronic Illness. *PMC*.
- Functional work disability from the perspectives of persons with systemic lupus erythematosus: a qualitative thematic analysis. *PMC*.
- Dysautonomia Support Network. Dysautonomia at Work. dysautonomiasupport.org
- Cognitive-behavioural therapy as an adjunctive treatment in chronic physical illness. *Advances in Psychiatric Treatment*, Cambridge Core.
- Internet-based and mobile-based cognitive behavioral therapy for chronic diseases: a systematic review and meta-analysis. *npj Digital Medicine*.

*This article is intended for educational purposes and is not a substitute for individualized medical or psychological care. If you suspect you have dysautonomia, please consult a physician for evaluation and diagnostic testing.*