If you’ve landed here, chances are you—or someone you love—is dealing with symptoms that don’t quite add up. Maybe it’s the constant dizziness, the unexplained fatigue, the racing heart, or that frustrating sense of “something’s wrong” even though your test results keep coming back normal. You’re not imagining it. And you’re not alone.
This guide is here to help you cut through the confusion and find real answers. It’s designed specifically for people navigating dysautonomia—whether you have a confirmed diagnosis like POTS (Postural Orthostatic Tachycardia Syndrome) or you’re just beginning to suspect something’s going on with your autonomic nervous system.
We’ll walk you through what kind of doctors actually understand this condition, how to build a care team that works for you, and why finding the right specialist is one of the most important steps you can take toward feeling better.
And along the way, we’ll highlight the approach of Dr. Sarah Diekman, a physician who not only treats dysautonomia, but lives with it. Her clinic in Oakland, Maryland, offers a multidisciplinary model of care that’s grounded in medical expertise and personal experience—a rare and valuable combination.
What Is Dysautonomia, Really?
Let’s start with the basics.
Dysautonomia is an umbrella term that refers to a dysfunction of the autonomic nervous system (ANS)—the system that controls automatic functions like heart rate, blood pressure, digestion, temperature regulation, and more.
In simple terms: your body is doing a lot of important things behind the scenes, and when that system goes off track, everything feels out of sync.
Common symptoms include:
- Lightheadedness or fainting when standing up
- Rapid heartbeat (especially when changing positions)
- Fatigue that doesn’t improve with rest
- Digestive issues (nausea, bloating, slow motility)
- Brain fog or difficulty concentrating
- Temperature sensitivity or abnormal sweating
- Shortness of breath, even without exertion
These symptoms vary from person to person and often fluctuate day to day, making diagnosis and treatment even more complex. It’s also why many people are misdiagnosed—or told their symptoms are “just anxiety.”
Why Specialized Care Matters So Much
Dysautonomia is not a one-size-fits-all condition, and unfortunately, most general practitioners and even some specialists don’t have the training to recognize or manage it properly.
That’s a huge problem. Why?
Because dysautonomia can mimic other conditions, and if a doctor isn’t experienced with it, they might:
- Order the wrong tests,
- Miss red flags,
- Or worse—dismiss your symptoms altogether.
The truth is, managing dysautonomia often requires a team of specialists: cardiologists, neurologists, physical therapists, nutritionists, and sometimes even immunologists or allergists. But they all need to be coordinated by someone who understands the big picture.
That’s where someone like Dr. Diekman comes in.
She doesn’t just check boxes—she builds relationships with patients, brings in the right team, and tailors a treatment plan to your specific symptoms and goals. It’s a whole-person, evidence-based approach that recognizes how complex and exhausting this condition can be.
Understanding Dysautonomia and Its Complexity
If you’ve been struggling with strange, frustrating symptoms like dizziness, brain fog, or an unexplained racing heart—and still don’t have answers—there’s a chance dysautonomia is part of the puzzle.
Unfortunately, getting a diagnosis for dysautonomia can feel like an uphill battle. The symptoms are real, but because they’re often invisible, many patients spend years bouncing between specialists before finally being heard.
Let’s break down what dysautonomia actually is, why it’s so hard to diagnose, and what symptoms to watch for.
What Is Dysautonomia, Really?
Dysautonomia is a disorder of the autonomic nervous system (ANS)—the part of your body that handles the stuff you don’t have to think about: heart rate, blood pressure, digestion, sweating, breathing, and even temperature control.
Think of your autonomic nervous system as the body’s autopilot. When it’s working properly, it keeps your internal systems balanced. But when it malfunctions—as it does in dysautonomia—your body can overreact or underreact to everyday stimuli, leaving you feeling off, even if you “look fine” on the outside.
Types of Dysautonomia
Dysautonomia isn’t just one condition—it’s an umbrella term for a group of related disorders. Here are a few of the most common:
- POTS (Postural Orthostatic Tachycardia Syndrome):
Your heart rate increases excessively when you stand up, often causing dizziness, palpitations, fatigue, and even fainting. - NCS (Neurocardiogenic Syncope):
This causes sudden drops in heart rate and blood pressure, leading to fainting (syncope), especially after standing or stress. - Orthostatic Hypotension:
A significant drop in blood pressure when standing, which can cause lightheadedness and blacking out. - Autoimmune Autonomic Ganglionopathy (AAG):
A rare autoimmune form of dysautonomia that involves widespread autonomic failure.
There are many more subtypes, and often, symptoms overlap or coexist with other conditions like Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), or Chronic Fatigue Syndrome (ME/CFS).
Common Symptoms of Dysautonomia
Because the autonomic nervous system is involved in so many functions, symptoms can be widespread and sometimes seem unrelated.
Here are some of the most common signs:
- Dizziness or lightheadedness (especially when standing)
- Fainting or near-fainting episodes
- Rapid or irregular heartbeat (tachycardia or palpitations)
- Chronic fatigue that doesn’t improve with rest
- Brain fog or trouble focusing
- Nausea, bloating, or other digestive issues
- Heat intolerance or unusual sweating
- Shortness of breath or “air hunger”
- Anxiety-like symptoms without a clear trigger
- Cold hands/feet or poor circulation
It’s not unusual for patients to feel like they’re dealing with a dozen different conditions, when in fact, these symptoms may all stem from dysautonomia.
Why Is Dysautonomia So Often Misdiagnosed?
Here’s the frustrating truth: dysautonomia is underdiagnosed and misunderstood, even by many medical professionals.
Here’s why:
- Symptoms Overlap with Other Conditions
A rapid heart rate? Must be anxiety.
Fatigue and brain fog? Maybe depression.
Digestive issues? Sounds like IBS.
Sound familiar?
Because dysautonomia affects so many systems, it can mimic or overlap with more common conditions. As a result, patients are often misdiagnosed with anxiety, panic disorders, depression, or even dismissed entirely.
- Lack of Awareness Among General Practitioners
Most medical schools don’t spend much time on the autonomic nervous system. Many doctors simply aren’t trained to recognize or test for dysautonomia—especially if the patient looks outwardly healthy.
And let’s be honest: when your symptoms don’t fit neatly into one box, it’s easy to be labeled “complex” or “too hard to treat.”
- Invisible Illness = Not Taken Seriously
One of the hardest parts of living with dysautonomia is that people often don’t believe you’re sick. You might look fine on the outside while struggling every day with symptoms that disrupt your life.
This invisibility can lead to a cycle of frustration, self-doubt, and even mental health challenges. It’s exhausting—but you’re not imagining it.
So, What Can You Do?
The first step is knowing what you’re dealing with. If this blog sounds like your experience, it may be time to talk to a specialist who truly understands dysautonomia.
At Diekman Dysautonomia, we believe every patient deserves to be heard, believed, and treated with real understanding. Dr. Sarah Diekman knows exactly how frustrating the diagnostic process can be—because she’s been through it herself. As both a physician and a POTS patient, she offers a rare and powerful combination of medical expertise and lived experience.
Key Qualities to Look for in a Dysautonomia Expert
Finding the right doctor when you’re dealing with dysautonomia can feel like searching for a needle in a haystack. You’ve probably already seen a handful of providers, been bounced between specialties, and maybe even told it’s “just anxiety.” So how do you actually know who’s the right person to help?
Here’s the truth: not all doctors are trained to understand dysautonomia—and even fewer know how to treat it with the care and depth it deserves. The good news? There are specialists out there who get it. You just need to know what to look for.
Let’s break down the key qualities that set true dysautonomia experts apart.
1. Specialization in Dysautonomia
First and foremost, you want someone who actually specializes in autonomic disorders—not just someone who has “heard of POTS.” This means they have:
- Formal training or experience with conditions like POTS, NCS, and other forms of dysautonomia.
- A track record of treating dysautonomia patients, not just reading about it in a textbook.
- An understanding that this isn’t a “one-size-fits-all” condition.
Take Dr. Sarah Diekman, for example. She’s a medical doctor who also lives with dysautonomia herself. That’s a rare and powerful combination: someone who not only knows the science but also lives the experience. When she treats patients, she’s not just diagnosing symptoms—she’s seeing you through a lens of deep, personal understanding.
2. Empathy and Clear Communication
A good dysautonomia specialist doesn’t just know what orthostatic intolerance or mast cell activation is—they know what it feels like to live with an invisible illness that turns your life upside down.
Here’s what to look for:
- They listen without rushing or brushing you off.
- They validate your symptoms, even if they’re complex or hard to explain.
- They explain things in plain English, not just medical jargon.
This might sound basic, but it’s huge. Many dysautonomia patients have experienced medical gaslighting or dismissal. The right provider will rebuild that trust by making you feel heard and respected from day one.
3. A Holistic, Whole-Body Approach
Dysautonomia doesn’t show up in one neat box. It affects your heart, brain, gut, nervous system, and often your emotional health. That’s why a good expert takes a multidisciplinary view of treatment.
They’ll consider:
- Medications to stabilize symptoms,
- Physical therapies and lifestyle changes,
- Diet, hydration, and sleep hygiene,
- Mental health support and coping tools.
At Diekman Dysautonomia, the approach isn’t just about prescriptions—it’s about building a customized treatment plan that supports your entire life, not just one system at a time. That’s what truly effective care looks like.
4. Reputation and Patient Reviews (With Context)
Let’s be real: in the age of online everything, patient reviews matter. They can offer valuable insight into how a provider treats people, how accessible they are, and how effective their care is.
But remember to read reviews in context:
- Chronic illness treatment is rarely one-and-done, and some patients may express frustration with the process, not the provider.
- Look for themes—does the doctor consistently get praise for listening, problem-solving, and being thorough?
- Don’t be afraid to ask around in support groups or dysautonomia forums. Word of mouth is still one of the most trusted sources.
That said, many patients at Diekman Dysautonomia speak openly about how Dr. Diekman’s unique perspective helped them finally feel seen—and finally get results.
Types of Experts for Dysautonomia: A Multidisciplinary Approach
If you’ve been living with dysautonomia—or even just starting to suspect it—you already know it doesn’t affect just one part of the body. It’s a full-body condition that can make everything from your heart rate to your digestion feel out of sync. That’s why finding the right type of expert can be confusing. Who should you see? A neurologist? A cardiologist? Both?
The truth is, dysautonomia requires a multidisciplinary care team, where different specialists work together to treat the whole picture—not just isolated symptoms. Let’s break down the key types of experts who typically play a role in diagnosis, treatment, and ongoing care.
Neurologists: The Nerve Experts
Since dysautonomia is a dysfunction of the autonomic nervous system, neurologists are often a key piece of the puzzle. They help rule out other neurological conditions and can provide diagnostic tests to assess how well your autonomic system is functioning.
How they help:
- Perform tilt-table tests, QSART, and autonomic reflex screens.
- Identify POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (Neurocardiogenic Syncope).
- Evaluate if your symptoms stem from other forms of neuropathy or central nervous system disorders.
- Prescribe medications that target nerve-related symptoms (like blood pressure instability or fainting).
Why it matters:
Neurologists often act as diagnostic gatekeepers—they’re trained to look at the complexity of your symptoms and connect the dots. A neurologist who specializes in autonomic disorders is ideal, but even a general neurologist can be a starting point for proper referrals.
Cardiologists: Tackling the Heart of the Problem
If your dysautonomia symptoms include a racing heart, palpitations, or episodes of dizziness when standing up, a cardiologist is often one of the first specialists you’ll encounter. These symptoms are common in POTS, which is characterized by a heart rate increase of 30+ beats per minute upon standing.
How they help:
- Evaluate orthostatic intolerance, blood pressure changes, and heart rate abnormalities.
- Rule out structural heart disease or arrhythmias.
- Prescribe medications like beta-blockers, ivabradine, or fludrocortisone.
- Monitor hydration and electrolyte levels as part of symptom management.
Why it matters:
Many patients are misdiagnosed with anxiety or panic disorder when their heart symptoms are actually due to dysautonomia. A knowledgeable cardiologist can tell the difference and validate your experience.
Electrophysiologists: The Rhythm Specialists
A subset of cardiologists, electrophysiologists focus on the electrical system of the heart. They’re especially helpful if your dysautonomia involves abnormal heart rhythms, syncope (fainting), or if you’re being evaluated for a pacemaker or other device.
How they help:
- Conduct extended cardiac monitoring (Holter, event monitors).
- Perform electrophysiology studies to map heart signals.
- Treat arrhythmias that may overlap with autonomic dysfunction.
- Assist with device implantation if needed (though rare in POTS-only patients).
Why it matters:
If your symptoms involve severe palpitations, unexplained fainting, or fluctuating heart rates, an electrophysiologist can provide clarity—and possibly life-changing treatment.
Gastroenterologists & Other Specialists: Managing the Whole Body
Dysautonomia doesn’t stop with the heart or nervous system. Many patients experience a wide range of digestive issues—from bloating and constipation to nausea and gastroparesis (delayed stomach emptying). That’s where gastroenterologists come in.
How they help:
- Diagnose and manage conditions like IBS, gastroparesis, and motility disorders.
- Recommend dietary modifications (like low FODMAP, low fiber, or small frequent meals).
- Prescribe prokinetic agents, anti-nausea meds, or coordinate nutrition support.
And it doesn’t stop there. Depending on your symptoms, you may also benefit from:
- Allergists/Immunologists – if you have Mast Cell Activation Syndrome (MCAS) or allergic-like responses.
- Rheumatologists – for Ehlers-Danlos Syndrome (EDS) or autoimmune issues often overlapping with POTS.
- Sleep specialists – if poor sleep is exacerbating your symptoms.
- Mental health professionals – to help manage the emotional toll of chronic illness (read more on that in our mental health blog.
Why it matters:
Dysautonomia is rarely just one thing. Building a care team with specialists who communicate with each other and understand how symptoms interconnect is key to improving quality of life.
Finding the Right Dysautonomia Specialist Near You
If you’re living with dysautonomia—or you suspect you might be—it’s normal to feel overwhelmed, especially when it comes to finding the right specialist. Many patients bounce from one doctor to another, often hearing things like “It’s just anxiety,” or “Your labs are normal.” It’s frustrating. You deserve better.
So the question becomes: How do you find a specialist who actually understands dysautonomia—and is close enough to see? Let’s walk through it.
Utilizing Online Resources to Find Local Dysautonomia Specialists
The internet can be a maze of misinformation, but there are a few trusted, patient-friendly tools that can help you locate dysautonomia-aware specialists based on your region.
Top Resources to Bookmark
- Dysautonomia International’s Physician Directory
A curated list of doctors worldwide who are experienced in diagnosing and managing autonomic disorders. - Facebook Support Groups (e.g., POTS, Dysautonomia)
Often, local patient communities share real-world feedback about which doctors are helpful—and which aren’t. - Healthgrades & Zocdoc
These can be helpful for checking reviews and availability, though they won’t always specify dysautonomia expertise. - University Hospitals or Autonomic Disorder Clinics
Teaching hospitals often have autonomic testing labs or research clinics. Don’t overlook these.
How to Vet a Dysautonomia Specialist: What to Ask & What to Look For
Finding a name on a list is just the beginning. Here’s how to figure out if a provider is truly right for you.
What to Look For:
- Experience with autonomic disorders (especially POTS, NCS, or MCAS)
- Affiliation with academic or research institutions
- Willingness to collaborate with other specialists
- Telemedicine options for ongoing care
- Positive patient reviews, especially from others with chronic/invisible illness
Questions to Ask Before Committing:
- “How many dysautonomia patients do you currently treat?”
- “Are you familiar with POTS, NCS, or related conditions?”
- “Do you take a multidisciplinary approach?”
- “What is your philosophy on managing long-term symptoms?”
Don’t be afraid to get a second opinion or schedule a consultation call before locking in a long-term provider. This is your health—you have every right to be selective.
Meet Dr. Sarah Diekman: A Specialist Who Truly Gets It
At Diekman Dysautonomia in Oakland, Maryland, you’re not just another case file. Dr. Sarah Diekman brings a rare combination of clinical expertise and lived experience to her practice.
She’s not only a physician—she’s a dysautonomia patient herself. That means when she says, “I understand,” she means it.
Why Patients Trust Dr. Diekman:
- Medical training at top institutions, including Johns Hopkins
- Specialization in Occupational and Environmental Medicine with a focus on autonomic disorders
- Compassionate care model that takes time to actually listen
- Telemedicine options for patients who live outside the area
If you’re near Maryland or surrounding states, Dr. Diekman offers both in-person and remote consultations. She knows the frustration of being unheard and is committed to making sure that doesn’t happen to her patients.
“I didn’t have a mentor with my illness to tell me better days were possible. I want to be that person for others.” — Dr. Sarah Diekman
Coming Soon: Interactive Expert Locator Tool
We’re developing a downloadable guide and interactive map to help you find vetted dysautonomia specialists near you.
This guide will include:
- A checklist of what to ask doctors
- A list of red flags to watch out for
- A clickable map of verified experts in various states
- Links to support resources and patient communities
If you’d like early access to the expert locator, sign up for updates or reach out via our Contact Page.
The Patient’s Voice: What Dysautonomia Patients Value Most in an Expert
If you’ve ever lived with dysautonomia—or cared for someone who does—you already know this: the medical journey is rarely straightforward. The symptoms are confusing. The diagnosis is often delayed. And finding a doctor who truly understands what you’re going through? That can feel like the hardest part.
Many dysautonomia patients spend years being told their symptoms are “just anxiety” or that everything looks “normal.” And while lab results and heart monitors are important, they don’t tell the full story. That’s why the voice of the patient matters so much. So let’s flip the script for a moment and ask: What do patients actually want in a dysautonomia expert?
1. Empathy Isn’t Optional—It’s Everything
When you’re living with an invisible illness, being believed is the first hurdle. Dysautonomia patients often say the same thing:
“I just want someone to listen and not dismiss me.”
That may sound simple, but it’s huge. Empathy means more than nodding along or handing over a prescription. It’s about really hearing what the patient is saying—even when the symptoms are hard to explain, even when the case doesn’t fit neatly into a textbook.
Patients want doctors who:
- Validate their experiences.
- Don’t rush appointments.
- Understand that the impact of dysautonomia isn’t just physical—it’s emotional, too.
Why Dr. Diekman’s Perspective Is Different
Dr. Sarah Diekman isn’t just a physician—she’s also a dysautonomia patient herself. That changes everything. She sat in the waiting room. She’s heard the same dismissive responses. She knows what it’s like to search for answers that no one seems to have.
That lived experience informs how she practices medicine. At Diekman Dysautonomia, patients consistently describe her care as personal, validating, and deeply human.
2. One Size Doesn’t Fit All—Personalized Care Matters
No two dysautonomia patients are the same. Some people can’t stand up without feeling faint. Others have debilitating GI issues, brain fog, or constant fatigue. Some are dealing with comorbidities like Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, or Long COVID.
And yet, many patients get one-size-fits-all treatment plans that don’t reflect their actual needs.
Here’s what patients value most:
- Customized treatment plans, not copy-paste protocols.
- A doctor who asks the right questions before prescribing.
- Adjustments based on how they’re actually doing—not just what the numbers say.
Dr. Diekman takes a functional, whole-person approach. She looks at how symptoms affect daily life—work, relationships, school, family—and helps patients set realistic goals. Treatment might include:
- Fluid and salt management strategies
- Medication support
- Lifestyle adjustments
- Mental health referrals
- Help navigating accommodations at work or school
This is collaborative care, not just clinical care.
3. Communication That Respects the Patient
Let’s be honest: a lot of specialists don’t take time to explain what’s going on. They might rush through test results or use complex medical terms that make patients feel even more overwhelmed.
Dysautonomia patients want:
- Clear explanations of what’s happening and why.
- Doctors who are willing to answer questions—even if there are a lot of them.
- Honesty about what’s known and what’s still uncertain in dysautonomia care.
One of the biggest compliments Dr. Diekman receives is that she takes her time. She’s not there to talk at you—she’s there to work with you. That patient-doctor relationship is built on trust, transparency, and mutual respect.
4. Support Beyond the Exam Room
Managing dysautonomia isn’t a quick visit and a follow-up. It’s often a long-term journey that requires ongoing support. Patients value experts who understand this and stay committed.
They appreciate when doctors:
- Help with documentation for disability or school accommodations.
- Offer telehealth options for those who struggle to travel.
- Are accessible when symptoms flare or treatments need adjusting.
At Diekman Dysautonomia, support doesn’t stop after your appointment ends. The goal is not just treatment—it’s helping you live better, function more fully, and feel heard every step of the way.
Beyond the ‘Best’ Expert: Building Your Dysautonomia Care Team
When you’re living with dysautonomia, especially conditions like POTS (Postural Orthostatic Tachycardia Syndrome), the natural question becomes:
“Who is the best doctor to treat this?”
But here’s the honest answer: it’s rarely just one doctor.
The reality is, the most effective care doesn’t come from a single “super specialist”—it comes from a team. A collaborative, multidisciplinary care team that understands your symptoms, listens to your concerns, and works with each other to support your full health picture.
Let’s break down what that means—and how you can build a team that works for you.
Why You Need More Than One Specialist
Dysautonomia is complex. It’s not just one organ system going haywire. It’s your heart rate, blood pressure, digestion, temperature regulation, fatigue, and even brain fog—all tangled together.
Because of that, patients are often sent on a medical scavenger hunt: cardiologists, neurologists, GI doctors, endocrinologists, allergists, and so on. It’s exhausting, and worse—it often leaves you as the middleman trying to connect the dots between doctors who aren’t communicating with each other.
Here’s the thing: that’s not how it should be.
You deserve a care team that:
- Shares information,
- Understands dysautonomia holistically,
- And puts you—not just your symptoms—at the center of care.
The Core Specialists Often Involved in Dysautonomia Care
Let’s look at who may be on your team and why they matter:
1. Primary Care Physician (PCP)
Your PCP can help coordinate care, track your treatment history, and refer you to specialists. They’re the central hub.
2. Cardiologist
Often needed for heart rate and blood pressure regulation, especially with POTS. Electrophysiologists (a cardiology subspecialty) may be involved in severe cases.
3. Neurologist
Especially important for autonomic testing, fainting episodes (like NCS), and nerve-related dysfunction.
4. Gastroenterologist
Dysautonomia can disrupt digestion—causing nausea, bloating, constipation, or diarrhea.
5. Endocrinologist
If there are overlapping hormonal or metabolic concerns, an endocrinologist may help rule out or manage contributing factors.
6. Therapist or Psychologist
Mental health matters. Living with a chronic illness can lead to anxiety, depression, or trauma. Support from a professional who understands chronic conditions is essential.
7. Physical Therapist / Occupational Therapist
They can help with reconditioning and teaching energy conservation techniques for everyday life.
Patient Advocacy: You’re Allowed to Speak Up
Here’s something many dysautonomia patients don’t hear enough:
You are allowed to ask questions.
You are allowed to switch doctors.
You are allowed to say, “This isn’t working for me.”
You’ve probably already had to advocate for yourself to get a diagnosis. That advocacy doesn’t stop once treatment starts. It’s okay to expect communication, collaboration, and compassion from your care team.
If a doctor doesn’t take the time to listen to you, or if your providers aren’t sharing information and your care feels fractured—you have every right to seek better.
Dr. Sarah Diekman’s Team-Based Model: Collaborative, Patient-Centered, Real
At Diekman Dysautonomia, the model of care is built around the idea that you can’t treat dysautonomia in a vacuum. Dr. Sarah Diekman, who lives with POTS herself, knows firsthand what it’s like to be bounced between providers who don’t see the full picture.
That’s why she created a collaborative, patient-first model where:
- Care is coordinated, not siloed.
- Mental health, physical health, and lifestyle factors are all addressed.
- Outside specialists (cardiology, neurology, GI, etc.) are looped in strategically, not reactively.
- Telemedicine makes it easier to maintain consistency and communication across distances.
Dr. Diekman also believes in equipping patients to advocate for themselves. That means helping you understand your own body better, explaining treatment plans clearly, and giving you realistic tools to manage symptoms day to day.
You’re not just a case file here—you’re a partner in your care.
Debunking Dysautonomia Myths: Expert Insights on Common Misconceptions
When it comes to dysautonomia, there’s no shortage of confusion—both in the medical world and among the general public. If you’ve ever been told “it’s just anxiety” or “that doesn’t sound real,” you’re not imagining the frustration. Dysautonomia is often misunderstood, misdiagnosed, and downplayed.
So let’s clear the air. With expert insights from Dr. Sarah Diekman, a physician who also lives with dysautonomia, we’re taking on some of the most common myths and setting the record straight.
Myth #1: “Dysautonomia is rare.”
Reality: It’s not rare—it’s just rarely diagnosed.
According to Dysautonomia International, over 70 million people worldwide live with some form of dysautonomia. Conditions like POTS (Postural Orthostatic Tachycardia Syndrome) and Neurocardiogenic Syncope are more common than many people realize—especially among young women.
Dr. Diekman explains:
“What makes dysautonomia seem rare is the lack of training most healthcare providers receive on the autonomic nervous system. Patients get passed from specialist to specialist without clear answers. But once you start looking in the right places, you’ll realize just how many people are living with these symptoms.”
Myth #2: “It’s all in your head.”
Reality: Dysautonomia is a physiological condition, not a psychological one.
Yes, many patients with dysautonomia experience anxiety or depression—but often as a result of their symptoms, not the cause. The dizziness, rapid heart rate, fatigue, and nausea are real, measurable, and often debilitating.
Unfortunately, because these symptoms can’t be seen from the outside, and often don’t show up on standard lab tests, patients are frequently dismissed or told to “just relax.”
Dr. Diekman adds:
“I’ve had patients come to me in tears, relieved just to be believed. Being told ‘you’re imagining it’ is not only wrong—it’s harmful. These conditions are real, and they deserve real treatment.”
Myth #3: “Dysautonomia only affects the heart.”
Reality: It affects many systems in the body.
The autonomic nervous system controls functions we don’t consciously think about: heart rate, digestion, blood pressure, temperature regulation, and more. That’s why dysautonomia can cause such a wide range of symptoms, including:
- Brain fog
- Lightheadedness
- GI issues
- Fatigue
- Sweating abnormalities
- Shortness of breath
It’s not “just your heart”—it’s your whole system being off-balance.
Myth #4: “There’s no treatment, so there’s no point in seeking help.”
Reality: There may not be a cure, but there are many ways to manage and improve symptoms.
Treatment plans are often multidisciplinary and include:
- Medications to regulate blood pressure and heart rate
- Physical therapy
- Dietary changes (increased salt and fluid intake)
- Compression garments
- Environmental modifications
Dr. Diekman emphasizes:
“Treatment is highly individualized. What works for one patient might not work for another, which is why it’s important to work with a specialist who understands how to build a plan around your specific needs.”
Myth #5: “You don’t look sick, so you must be fine.”
Reality: Dysautonomia is often an invisible illness.
You can look perfectly healthy on the outside and still be struggling to stand up, stay focused, or even eat. Many patients face skepticism not just from doctors, but from employers, teachers, friends, and even family members.
This invisibility adds an extra emotional burden on top of already difficult physical symptoms.
Dr. Diekman notes:
“We need to shift the mindset that illness has to look a certain way. Just because someone can smile in a photo doesn’t mean they aren’t fighting hard just to get through the day.”
Myth #6: “Only young women get dysautonomia.”
Reality: While young women are more commonly diagnosed, dysautonomia affects people of all ages and genders.
Men and older adults can also develop autonomic dysfunction, though they’re often underdiagnosed because of the stereotype that this is a “young women’s issue.” Dysautonomia can also appear in children or develop later in life, especially after infections, surgeries, or trauma.
Resources for Finding Dysautonomia Experts
If you’re dealing with dysautonomia—whether it’s POTS, NCS, or another form—you’ve probably realized that finding the right specialist isn’t always straightforward. You may have already bounced between doctors, received vague answers, or heard “It’s just anxiety” more times than you care to count.
You deserve better. And the good news is: resources do exist. It’s just a matter of knowing where to look and how to advocate for the care you need.
Let’s walk through practical ways to find qualified dysautonomia experts, with a focus on online directories, primary care involvement, and insurance tips to keep things manageable.
1. Professional Directories: Where to Start Your Search
There are a handful of trusted online platforms that can help you identify specialists who understand autonomic disorders. Here are some worth exploring:
Dysautonomia International’s Physician List
- One of the most reliable resources.
- Offers a patient-curated list of doctors who are familiar with dysautonomia.
- Organized by state/country.
- Link: dysautonomiainternational.org
Pro tip: This list is built from patient feedback, so if a provider is on there, it likely means they’ve helped others like you.
ClinicalTrials.gov
- While it’s primarily for research, it often lists institutions and physicians conducting trials on dysautonomia.
- These physicians are typically on the cutting edge of the field.
Autonomic Disorders Consortium
- A collaborative research network funded by the NIH.
- Their partner institutions (like Vanderbilt, Mayo Clinic, etc.) have autonomic centers that treat patients and conduct research.
Healthgrades, Zocdoc, and RateMDs
- Not dysautonomia-specific, but helpful for reading reviews, checking specialties, and seeing if a doctor has experience with “autonomic dysfunction” or “POTS.”
Facebook and Reddit Groups
- While not official, these communities can offer real-world recommendations.
- Always vet suggestions, but you might uncover helpful local referrals from others who’ve been in your shoes.
2. Consulting with Your Primary Care Physician (PCP)
Your PCP can be a valuable ally—if they’re willing to listen and collaborate.
Here’s how to involve them effectively:
Share your symptoms clearly and consistently
If you’ve tracked your heart rate, blood pressure changes, fatigue, or fainting episodes, bring those notes in. A symptom journal or app data (like from a smartwatch) can go a long way.
Ask for specific referrals
Rather than saying, “I don’t feel well,” say, “I think I may be dealing with dysautonomia or POTS. Can you refer me to a neurologist or cardiologist who understands autonomic disorders?”
Provide them with information
Many PCPs aren’t trained in dysautonomia. That doesn’t mean they don’t care—they might just be unfamiliar. Bring a printed summary from Dysautonomia International or similar sources to help educate them and guide your referral.
Let them coordinate
Once you do find a specialist, your PCP can stay in the loop, manage medications, or help you get insurance approvals faster. Think of them as your care coordinator—especially if you’re working with multiple specialists.
3. Insurance Considerations: Avoiding Surprise Bills
Even if you find the perfect dysautonomia specialist, it won’t help much if they’re out-of-network or not covered by your plan. Here’s how to make sure your care is also financially manageable.
Call your insurance provider directly
Ask:
- “Is Dr. [Name] in-network for my plan?”
- “Are autonomic testing or tilt-table tests covered?”
- “Do I need a referral for a specialist?”
Document everything—names, dates, answers—just in case you need to appeal a denial later.
Use your insurer’s provider search tool
Most health insurance websites let you search for in-network specialists by specialty or name. Use terms like:
- “Cardiology – Electrophysiology”
- “Neurology – Autonomic Disorders”
- “Internal Medicine – Complex Chronic Conditions”
Ask providers about cash-pay or out-of-network rates
Some dysautonomia clinics (especially smaller or specialty ones) don’t take insurance, but offer transparent pricing or help you file reimbursement claims.
At Diekman Dysautonomia, for example, the team can guide you on telehealth coverage and paperwork for insurance reimbursement, even if you’re outside Maryland.
Additional Support: The Emotional and Psychological Aspects of Dysautonomia
Living with dysautonomia can feel like riding an emotional rollercoaster—but not the fun kind. The kind where you’re not sure what’s coming next, you’re exhausted, and you wish someone would just pull the brake.
While a lot of attention (understandably) goes to the physical symptoms—the dizziness, the heart palpitations, the fatigue—there’s another side to this condition that doesn’t get enough spotlight: the emotional and psychological toll it takes on patients.
Why Mental Health Matters in Dysautonomia Care
If you’ve ever found yourself wondering “Why am I so anxious?” or “Is this depression or just my body being off again?”, you’re not alone. Anxiety and depression are incredibly common among dysautonomia patients—not because the condition is “in your head,” but because it affects your entire system, including your nervous system, which directly impacts emotional regulation.
Dysautonomia + Mental Health = A Complicated Combo
Here’s why managing dysautonomia can lead to anxiety or depression:
- Unpredictable symptoms make planning hard and fuel fear.
- Lack of diagnosis or validation early on makes people question their reality.
- Social isolation creeps in when energy is limited and others don’t understand.
- Chronic fatigue and brain fog make it harder to stay engaged or hopeful.
- Physical symptoms mimic anxiety, which can make you feel gaslit by the medical system—or even by yourself.
It’s no surprise that many patients report feeling overwhelmed, frustrated, and even hopeless at times.
But here’s the good news: You’re not crazy. And you’re not alone.
Managing Anxiety and Depression with Dysautonomia
The emotional weight of dysautonomia is real—and so are the ways to manage it. Here are some realistic, compassionate strategies that can help:
1. Name What You’re Feeling
Sometimes the first step is just acknowledging that what you’re feeling is legitimate. Journaling, voice memos, or even telling a trusted friend can help offload that mental burden.
2. Find the Right Mental Health Provider
It’s key to work with someone who understands chronic illness. Look for:
- Therapists specializing in chronic pain or fatigue
- Professionals trained in health psychology
- Support groups—online or local—that are POTS/dysautonomia-friendly
These professionals don’t just treat your mind—they help you live more peacefully in a body that doesn’t always cooperate.
3. Practice Gentle Mind-Body Techniques
Not every day will feel like a good day. But practices like:
- Mindfulness and breathwork
- Yoga or stretching for autonomic balance
- Guided meditations can create space for calm even when your symptoms are flaring.
4. Establish “Micro-Wins”
When big goals feel out of reach, focus on the small victories:
- Getting dressed
- Making a call
- Resting without guilt
Micro-wins build momentum, and momentum boosts mental health.
5. Stay Connected (Even When You Don’t Feel Like It)
Text a friend. Send a meme. Join a virtual support group. Isolation feeds despair, but connection—even tiny doses of it—can shift your whole mindset.
Expert Insight: Dr. Diekman’s Take on the Emotional Side of Dysautonomia
Dr. Sarah Diekman, MD, JD, MS, MPH, knows dysautonomia from both sides of the exam table—as a physician and a patient. Here’s what she says about the emotional aspect:
“When I was first struggling with symptoms, I kept thinking, Why can’t I just push through this? I didn’t understand that my nervous system was out of sync—and that wasn’t something I could willpower my way through.
Eventually, I realized that emotional health is physical health, especially with dysautonomia. That’s why in my practice, we don’t just ask, ‘How’s your blood pressure?’ We also ask, *‘How’s your hope?’ Because healing happens on multiple levels.”
Dr. Diekman often encourages her patients to treat mental health care as part of their medical care, not something separate or optional. Because when you address the emotional weight of chronic illness, everything else starts to feel a little more manageable.
Conclusion
Finding the right expert for dysautonomia can feel overwhelming, but it’s one of the most important steps you can take toward managing your health and reclaiming your life. The right specialist doesn’t just treat symptoms—they understand the complexity of autonomic disorders and how they affect your daily experience. A multidisciplinary care team, combined with a provider who truly listens, can make all the difference. And if something doesn’t feel right, don’t hesitate to seek a second opinion—your voice matters. At Diekman Dysautonomia, Dr. Sarah Diekman offers more than just medical expertise; she brings the perspective of someone who’s lived through it. If you’re ready for personalized, compassionate care, call 833-768-7633 to schedule your consultation and take the next step forward.
