Who is the Best Expert on Dysautonomia? Finding the Right Specialist for Your Care

Dysautonomia isn’t just one condition—it’s an umbrella term for a group of disorders that affect the autonomic nervous system (ANS), the part of your body that controls things you don’t have to think about, like your heart rate, blood pressure, digestion, and temperature regulation. When the ANS isn’t working properly, those automatic functions can go haywire—and life becomes a lot more complicated.

For many people living with dysautonomia, symptoms show up in unpredictable ways. One day, you might feel lightheaded or dizzy when you stand. Next, your heart might be racing after simply walking across the room. Some people faint. Others deal with constant fatigue, brain fog, nausea, or trouble regulating body temperature. And because these symptoms can vary widely and affect multiple systems in the body, getting a diagnosis can be incredibly frustrating.

You may go from doctor to doctor, trying to explain what you’re experiencing, only to be told, “Everything looks fine,” or worse, “It’s probably just anxiety.” But these symptoms are real—and they’re exhausting.

That’s why finding the right specialist is so important. Dysautonomia is complex, and it often requires a physician who not only understands the science, but also takes the time to connect the dots across your symptoms. From cardiologists to neurologists to dedicated dysautonomia clinics, knowing where to turn can make all the difference in how you manage your health.

This blog will guide you through who these experts are, what qualifications to look for, and how to start building a care team that actually gets it—and gets you.

The Complexity of Dysautonomia: Why One ‘Best Expert’ Doesn’t Exist

It’s totally understandable to search for the best doctor when you’re dealing with something as overwhelming as dysautonomia. You want answers. You want a plan. And ideally, you want someone who’s seen it all and knows exactly what to do.

But here’s the thing: dysautonomia isn’t one-size-fits-all—and that’s exactly why one single “best expert” doesn’t exist.

Dysautonomia Isn’t Just One Condition

Dysautonomia is an umbrella term for a group of disorders that affect the autonomic nervous system—the part of your body that controls things you don’t consciously think about, like heart rate, blood pressure, digestion, and temperature regulation.

This means symptoms can vary wildly. One person may struggle with dizziness and fainting (as in POTS or neurocardiogenic syncope), while another deals with GI distress, fatigue, or brain fog. Some patients even experience all of the above—and more.

Because it involves multiple systems, dysautonomia isn’t usually something a single specialist can fully handle. It’s also not widely taught in medical schools, which adds another layer of difficulty when you’re trying to find someone who truly understands what you’re going through.

Why the “Best” Expert Depends on You

So who is the best expert? It depends—on your symptoms, your diagnosis (if you have one), and even where you live.

For example:

• If your main symptoms involve heart rate or blood pressure fluctuations, a cardiologist, especially one familiar with POTS or syncope, may be a great starting point.
• If you experience nerve-related symptoms or autonomic neuropathy, a neurologist with a focus on autonomic disorders might be key.
• If you’re dealing with chronic GI issues, fatigue, or comorbidities like Ehlers-Danlos or mast cell activation syndrome, you may also need a gastroenterologist, rheumatologist, or allergist/immunologist in the mix.

Each of these specialists can address a piece of the puzzle—but rarely the whole thing on their own.

Building a Team: The Real Answer

Rather than chasing a single all-knowing provider, the better approach is to build a team. Think of it like assembling your personal board of directors for your health. You need different perspectives, each offering their expertise to help manage your condition holistically.

That team might include:

• A primary care physician who believes you and helps coordinate care
• A neurologist with autonomic expertise
• A cardiologist who understands dysautonomia-related heart rate issues
• A mental health professional for emotional support (which is just as important)
• And maybe even a physical therapist, nutritionist, or sleep specialist, depending on your needs.

The best care happens when these providers talk to each other, share information, and see you as a whole person, not just a list of symptoms.

Real Talk: It’s Not Always Easy—But It’s Worth It

We won’t pretend that building this kind of care team is easy. It takes time, patience, and yes, a fair amount of persistence. But getting the right support from the right people—people who really get what dysautonomia means for your life—can make all the difference.

And if you’re feeling stuck, remember: there are clinics like Diekman Dysautonomia that specialize in exactly this kind of collaborative, patient-centered care. Dr. Sarah Diekman brings both medical expertise and lived experience with dysautonomia to help patients get the answers and support they’ve been searching for.

Types of Experts to Consider: Building Your Dysautonomia Care Team

If you’ve been living with dysautonomia—or suspect you might be—it’s easy to feel like you’re bouncing between specialists without clear answers. That’s because dysautonomia doesn’t belong to just one medical box. It affects multiple systems in the body, which means effective treatment often requires a team approach.

Here’s a breakdown of the different types of specialists who can play a vital role in your care:

Neurologists: The Autonomic System Specialists

Neurologists who specialize in autonomic disorders are often at the center of a dysautonomia care team. Why? Because dysautonomia is, at its core, a dysfunction of the autonomic nervous system—the system responsible for regulating things like blood pressure, digestion, heart rate, and body temperature.

A skilled neurologist will know how to:

• Run autonomic testing (such as tilt table tests)
• Diagnose specific forms like POTS or neurocardiogenic syncope
• Rule out neurological conditions with similar symptoms
• Coordinate with other providers for full-body care

Cardiologists: Managing the Heart’s Response

Many dysautonomia patients deal with symptoms like a racing heart, blood pressure swings, or lightheadedness—especially when standing. That’s where a cardiologist, often one who specializes in electrophysiology, comes in.

They help manage:

• Orthostatic intolerance
• Tachycardia (especially in POTS)
• Blood pooling and circulation issues
• Monitoring and adjusting medications like beta blockers or fludrocortisone

Endocrinologists: Balancing Hormones That Impact Symptoms

Hormonal imbalances—like thyroid dysfunction, adrenal issues, or insulin resistance—can worsen dysautonomia symptoms or even mimic them. Endocrinologists help rule out or treat these overlapping issues so your treatment plan is targeted and effective.

They can be especially helpful if you have:

• Irregular menstrual cycles
• Chronic fatigue that worsens with stress
• Blood sugar crashes or unexplained weight changes

Physical and Occupational Therapists: Regaining Function, Building Strength

Dysautonomia can rob you of your stamina, strength, and independence—but rehab professionals can help get that back.

• Physical therapists (PTs) with experience in chronic illness can design gentle, graded exercise programs (like recumbent workouts) to improve blood flow and tolerance.
• Occupational therapists (OTs) can help with energy conservation strategies, assistive tools for daily living, and ways to make your environment more supportive.

It’s not just about regaining strength—it’s about regaining quality of life.

Other Specialists to Keep in Mind

Because dysautonomia is so complex, other experts can be valuable too:

• Dietitians: Nutritional guidance for salt/fluid intake, GI symptoms, and overall energy support.
• Sleep specialists: For treating insomnia, non-restorative sleep, or coexisting sleep apnea.
• Pain management doctors: For those also dealing with joint pain, nerve pain, or fibromyalgia-like symptoms.
• Psychologists or counselors: To support mental health, which is often impacted by chronic illness.

Key Qualities of a Dysautonomia Expert: What to Look for in Your Care Team

When you’re dealing with dysautonomia—a condition that’s complex, often misunderstood, and deeply personal—the right specialist makes all the difference. But with so many doctors out there, how do you know who’s actually equipped to help?

Here’s what to look for when building your care team:

1. Deep Expertise in Autonomic Disorders

First and foremost, the doctor should specialize in autonomic nervous system dysfunction. That means they aren’t just vaguely familiar with terms like POTS, NCS, or orthostatic intolerance—they’ve treated them, studied them, and understand how tricky these conditions can be.

Don’t be afraid to ask:

• “How many patients with dysautonomia have you treated?”
• “Are you familiar with my specific symptoms or subtype?”

Doctors with real expertise won’t be thrown off by symptoms like brain fog, fainting, or extreme fatigue. They’ll recognize them for what they are: signs that your autonomic nervous system isn’t working the way it should.

2. A Patient-Centered, Compassionate Approach

This isn’t just about credentials—it’s also about bedside manner.

Dysautonomia can make you feel dismissed or misunderstood. The right expert will listen without rushing, ask thoughtful questions, and include you in the decision-making process. They’ll treat you as a partner in your care, not just a list of symptoms.

If your doctor doesn’t make you feel seen or heard, they may not be the right fit—no matter how impressive their résumé is.

3. Up-to-Date on the Latest Research and Treatments

The field of dysautonomia is evolving. New studies, treatment protocols, and diagnostic tools are constantly emerging. A good specialist doesn’t just rest on their training—they actively stay informed and adjust their approach as science evolves.

You want a provider who says, “Here’s a promising new therapy we’re trying,” not one who says, “There’s nothing more we can do.”

4. Ability to Communicate Clearly

Medical jargon is everywhere, but when it comes to your health, you deserve clear, honest conversations. The best dysautonomia experts know how to break down complex ideas in ways that actually make sense.

You should leave appointments feeling more confident, not more confused.

Good communication also means they’re upfront about what’s known, what’s still being studied, and what your realistic options are.

5. A Proven Track Record

Lastly, look for experience and results. That doesn’t mean your doctor has to be famous—but they should have:

• A history of treating dysautonomia patients,
• Positive reviews or testimonials,
• And ideally, referrals from others in the field.

Ask around. Read patient stories. Sometimes, the best sign of a great doctor is the way their patients talk about them.

How to Research and Vet Potential Experts: A Step-by-Step Guide

Finding the right dysautonomia expert isn’t as simple as Googling “doctor near me.” This condition is complex, often misunderstood, and frequently misdiagnosed—so choosing the right specialist can make a world of difference in how quickly you get answers and how effectively your symptoms are managed.

Here’s a step-by-step guide to help you do more than just find a doctor—you’ll learn how to vet them, too, so you feel confident they’re equipped to actually help.

Step 1: Use Trusted Online Resources

Start by searching through credible websites and directories specifically geared toward dysautonomia or complex chronic illnesses.

• Dysautonomia International: Their Physician List includes vetted providers who understand conditions like POTS and NCS.
• Patient-led forums: Sites like Reddit’s r/dysautonomia or Inspire’s dysautonomia groups often include personal experiences and recommendations.
• Health provider directories: Try sites like Healthgrades, Zocdoc, or Vitals—but take reviews with a grain of salt. Look for patterns in patient feedback, not one-off stories.

Pro tip: Look for keywords in bios like “autonomic disorders,” “POTS,” “orthostatic intolerance,” or “dysautonomia specialist.”

Step 2: Ask for Recommendations

Online research is helpful, but sometimes real-world referrals are even more powerful.

• Support groups (online or local) are gold mines for this. Members are often more than willing to share who helped—or didn’t.
• Ask your primary care physician or another trusted provider. They may know of a neurologist, cardiologist, or internist who works with autonomic disorders.
• Don’t forget your network. Friends, coworkers, or extended family members may surprise you with a helpful lead.

Word-of-mouth referrals carry weight—especially when they come from people who’ve actually walked this road.

Step 3: Verify Credentials and Experience

Just because someone has “MD” or “DO” after their name doesn’t mean they’re the right fit for treating dysautonomia.

Here’s what to look for:

• Board certifications in relevant specialties (neurology, cardiology, internal medicine, etc.)
• Experience with dysautonomia or POTS specifically—how many patients have they treated?
• Affiliations with respected hospitals, universities, or autonomic centers
• Membership in organizations like the American Autonomic Society
• Published research or articles on autonomic disorders (a Google Scholar search can help)

Don’t be afraid to Google their name + “dysautonomia” or “POTS” and see what comes up.

Step 4: Schedule a Consultation—Yes, Really

Sometimes, the best way to know if a doctor is right for you is to meet them—even briefly.

During a consultation (even if it’s virtual), ask:

• “How familiar are you with dysautonomia and its subtypes?”
• “What’s your general approach to diagnosis and treatment?”
• “Do you work with other specialists like neurologists or physical therapists?”
• “How often do you see patients with symptoms like mine?”

And here’s the big one: Do they listen?
If you feel rushed, dismissed, or brushed off during the first visit, that’s a red flag. A good dysautonomia doctor is one who takes the time to understand your full story, not just the bullet points.

Red Flags to Watch Out For When Choosing a Dysautonomia Expert

Finding a specialist who truly understands dysautonomia can feel like searching for a needle in a haystack—but knowing what not to settle for is just as important as knowing what to look for.

Here are some major red flags that should give you pause when evaluating whether a provider is truly equipped to help you manage your condition.

Dismissive Attitude

If a doctor seems uninterested, rushed, or brushes off your symptoms with phrases like “It’s probably just stress” or “Everything looks normal,” that’s a huge red flag. Dysautonomia is often called an “invisible illness” because symptoms may not show up on standard tests. A good specialist knows this—and listens carefully. If your doctor isn’t taking the time to hear you out, or worse, makes you feel like you’re exaggerating, you deserve better. Trust your gut.

Lack of Specialized Knowledge

Just because a provider has “neurology” or “cardiology” on their nameplate doesn’t mean they’re automatically equipped to treat dysautonomia. This is a nuanced, often misunderstood condition. If your provider doesn’t seem familiar with terms like POTS, NCS, or autonomic dysfunction—or can’t explain their approach clearly—it’s worth asking more questions or seeking someone who specializes in autonomic disorders.

Look for:

• Experience treating dysautonomia patients
• Membership in relevant medical societies
• Involvement in continuing education or research
• Referrals from patients or dysautonomia-specific networks

Inconsistent or Contradictory Advice

One provider says you need salt, another says avoid it. One pushes medications, another tells you to hydrate and hope for the best. Conflicting advice with no explanation can leave you more confused than when you started.

A trustworthy expert may not have all the answers immediately—but they should be able to explain the why behind their recommendations. If a provider changes direction frequently without explanation or contradicts themselves from visit to visit, it could mean they’re not fully informed or not following a structured treatment model.

Limited Communication or Accessibility

Medical expertise means little if you can’t access it. If it’s nearly impossible to get a callback, schedule an appointment, or get clear instructions between visits, that’s a sign of poor care coordination.

You deserve a provider—and a clinic—who respects your time and understands the importance of clarity. Dysautonomia symptoms can be unpredictable, so having responsive support matters. Look for offices with solid follow-up systems, clear points of contact, and a reputation for good patient communication.

Essential Resources and Organizations for Dysautonomia Patients

Getting diagnosed with dysautonomia is often just the beginning. From there, it’s about learning how to manage symptoms, advocate for care, and—importantly—not feel alone in the process. Whether you’re newly diagnosed or years into your journey, having the right support and information can make a world of difference.

Here are some trusted, valuable resources that can help guide you, connect you with others, and keep you informed:

Dysautonomia International

This is the go-to organization for just about everything related to dysautonomia. Dysautonomia International offers a mix of education, advocacy, and research funding, all with a patient-first mindset.

What they provide:

• Up-to-date information about different types of dysautonomia (like POTS, NCS, etc.)
• A directory of specialists and clinical centers
• Virtual and in-person events, including their popular annual conference
• Fundraising for research and awareness efforts

Website: www.dysautonomiainternational.org

Patient Advocacy Groups

Advocacy groups often fly under the radar, but they’re powerful tools for support, storytelling, and navigating the healthcare system. These groups are typically run by people who have walked the same road you’re on—and that perspective matters.

Look for groups that:

• Share real patient stories (it helps to hear you’re not alone)
• Provide doctor recommendations from the patient community
• Help with insurance navigation or disability paperwork
• Offer legal or workplace accommodations support

Some are formal nonprofits, others are more grassroots—but they’re all rooted in one thing: community.

Research Networks & Clinical Centers

For patients seeking cutting-edge care or a deeper understanding of their condition, connecting with a major research hospital can be incredibly helpful. These institutions often run specialized autonomic disorder clinics and contribute to ongoing research.

Top recognized names include:

• The Mayo Clinic (especially Rochester, MN): Known for deep expertise in autonomic nervous system testing and research.
• Cleveland Clinic: Offers a dedicated autonomic laboratory and sees many complex dysautonomia cases.
• Vanderbilt Autonomic Dysfunction Center (Nashville, TN): A leader in POTS research and treatment.
• NIH (National Institutes of Health): Occasionally runs studies and clinical trials on dysautonomia-related conditions.

Even if you’re not local, these centers often share research updates and may offer telehealth options or referrals.

Online & Local Support Groups

Sometimes what you need most is to talk to someone who just gets it. That’s where support groups come in—whether virtual or in your hometown, they’re a lifeline when things get tough.

What support groups offer:

• A space to ask, vent, share, and learn—judgment-free
• Tips on navigating life with dysautonomia (from clothing to hydration hacks)
• Emotional support from people who’ve been through similar challenges
• Occasional guest speakers, meetups, or webinars

Where to find them:

• Facebook groups (search terms like “POTS Support,” “Dysautonomia Warriors,” etc.)
• com (some areas host in-person meetups)
• Reddit forums (r/dysautonomia, r/POTS)
• Resources listed by Dysautonomia International

Pro tip: Look for groups moderated by patients and/or medical professionals to ensure a respectful, helpful space.

Patient Story Spotlight: “My Expert Team” – Real-Life Experiences

Finding the right expert for dysautonomia doesn’t just mean seeing one great doctor—it’s about building a care team that works together, understands your condition, and supports you as a whole person. To show what that can look like in real life, here’s a composite story based on real experiences from patients we’ve worked with at Diekman Dysautonomia.

Meet Emily

Emily was 28 when she started experiencing symptoms that didn’t seem to fit together: dizzy spells when standing, constant fatigue, heart palpitations, brain fog, and unexplained nausea. For years, she bounced from doctor to doctor, getting vague answers and prescriptions that didn’t help much. At one point, she was told to “cut back on caffeine and get more sleep.” Another provider said it was just anxiety.

Frustrated but determined, Emily began tracking her symptoms, doing research, and looking for specialists who actually knew what dysautonomia was. That’s when she found Dr. Sarah Diekman and made the call.

Building Her Team

Dr. Diekman was the first provider who looked at the entire picture, not just isolated symptoms. She took time to listen to Emily’s history, validated her concerns, and helped map out a plan. But the magic really started when the care became collaborative.

Here’s what Emily’s care team looked like:

• Sarah Diekman (Primary Dysautonomia Specialist)
  Coordinated the entire care plan, ordered diagnostic testing (like a tilt table test), and helped Emily understand how her autonomic nervous system was involved.
• Cardiologist (Electrophysiologist)
  Managed her POTS-related heart rate issues and helped adjust medications like beta blockers to stabilize her symptoms.
• Neurologist (Autonomic Specialist)
  Helped rule out other nervous system disorders and provided input on neurological symptoms like migraines and fainting episodes.
• Gastroenterologist
  Addressed nausea, bloating, and motility issues tied to dysautonomia-related GI dysfunction.
• Physical Therapist (with autonomic rehab experience)
  Created a gentle, graded exercise plan tailored to Emily’s energy levels and orthostatic tolerance.
• Mental Health Therapist (chronic illness-informed)
  Supported Emily in managing the emotional side of chronic illness—helping her process fear, grief, and adjustment to a new normal.

The Power of a Team

This collaborative approach changed everything for Emily. No more conflicting advice. No more feeling like she had to play “case manager” for her own illness. Her team communicated regularly, shared notes, and adjusted her plan as needed. Instead of feeling like a burden in the healthcare system, she finally felt seen, supported, and understood.

Her symptoms didn’t vanish overnight—but her quality of life dramatically improved. She returned to part-time work, started socializing again, and felt hopeful for the first time in years.

What This Means for You

You don’t have to figure this out alone. Dysautonomia is complex, and it often requires many minds working together to manage it well. Building your care team may take time, but when you find the right mix of expertise and empathy, the results are worth it.

If you’re still trying to find that first anchor for your team, start with someone who knows the condition inside and out—like Dr. Diekman. She’s not just a physician—she’s lived this journey herself.

Call 833-768-7633 to schedule a consultation and begin building your team today.

Ask the Experts: Answers to Common Questions About Dysautonomia

When you’re living with dysautonomia—or suspect you might be—it’s normal to have a lot of questions. Unfortunately, reliable answers can be hard to find, especially when your symptoms don’t fit neatly into one category. That’s why we’ve put together this expert-driven Q&A section, featuring insights from Dr. Sarah Diekman and the care team at Diekman Dysautonomia.

Let’s get into the questions we hear most often.

Q: What type of doctor is best for dysautonomia?

A: It depends on your symptoms, but the best starting point is often a neurologist or a cardiologist—specifically one with experience in autonomic disorders. Many patients with POTS or neurocardiogenic syncope (NCS) are referred to electrophysiologists (a type of cardiologist who deals with heart rhythm issues) or autonomic neurologists (who specialize in nervous system dysfunction).

That said, a single specialist is rarely enough. Dysautonomia affects multiple systems, so building a multidisciplinary team is often the most effective approach. At Diekman Dysautonomia, we coordinate care across neurology, cardiology, physical therapy, and mental health to make sure no aspect of your condition is overlooked.

Q: What type of doctor should I see for autonomic dysfunction?

A: Autonomic dysfunction refers to problems with the autonomic nervous system, which controls things like heart rate, blood pressure, digestion, and temperature regulation. You’ll want to see a physician with specific training in autonomic testing and evaluation. These are often found in autonomic clinics or academic medical centers.

Dr. Sarah Diekman emphasizes that the doctor’s experience with dysautonomia specifically matters just as much as their title. Always ask:

“How many dysautonomia patients have you treated?”
“Are you familiar with POTS, NCS, or other forms of autonomic dysfunction?”

If the answers feel vague, keep looking.

Q: What is the best hospital for autonomic dysfunction?

A: Several U.S. medical centers are well-known for their autonomic programs. These include:

• Cleveland Clinic
• Vanderbilt University Medical Center
• Mayo Clinic
• Beth Israel Deaconess Medical Center (Boston)

However, you don’t always need to travel far. Smaller, specialized clinics—like Diekman Dysautonomia in Oakland, Maryland—offer expert-level care without the waitlists and travel costs of larger institutions. Plus, with the rise of telemedicine, access to expertise is more flexible than ever.

Q: What is the new treatment for dysautonomia?

A: There’s no single “new” treatment that cures dysautonomia, but there is growing awareness and innovation in managing symptoms. Treatments now often include:

• Compression garments to improve blood flow
• IV saline therapy for volume expansion
• Beta blockers and fludrocortisone for regulating blood pressure
• Midodrine to help with orthostatic intolerance
• New rehab approaches like graded exercise programs, developed specifically for POTS

Dr. Diekman adds:

“What’s new isn’t always a drug—it’s the approach. We’re shifting toward customizing care for each patient rather than applying one-size-fits-all solutions.”

Q: What is the drug of choice for autonomic dysfunction?

A: There isn’t one single “go-to” drug—treatment must be tailored to the type and severity of your dysautonomia. That said, here are some common medications:

• Fludrocortisone: boosts blood volume
• Midodrine: raises blood pressure
• Propranolol or other beta blockers: controls heart rate in POTS
• Pyridostigmine: improves nerve signaling in some forms
• Ivabradine: often used off-label for POTS with tachycardia

It’s crucial that these meds be prescribed and monitored by someone with deep experience in dysautonomia, as they affect the body’s most basic systems.

Q: What is the best thing for dysautonomia?

A: The best thing? Validation, a solid care plan, and support.

There’s no cure (yet), but with the right team, you can absolutely feel better. Many patients improve with:

• Lifestyle changes (salt, hydration, exercise)
• Medication tailored to their symptoms
• Mental health support
• Consistent follow-up care

Dr. Diekman puts it simply:

“The best thing is a doctor who listens and adapts treatment to you—not the textbook version of you.”

Expert Tips for Choosing the Right Dysautonomia Expert

Finding the right doctor when you’re dealing with dysautonomia isn’t just important—it can be life-changing. Too many patients spend years bouncing between specialists, being told their symptoms are “just stress” or that everything looks normal, even when their bodies clearly say otherwise. The truth is, not every provider is equipped to recognize and treat autonomic nervous system disorders.

So, how do you cut through the noise and find someone who truly gets it? Here are five expert tips to help you identify the right dysautonomia specialist for your care.

1. Look for Autonomic Nervous System Expertise

This is key. Dysautonomia isn’t something covered in depth in most medical school programs, which means only a small percentage of physicians go on to specialize in it. When you’re evaluating a potential doctor, make sure they have a specific focus on autonomic disorders—not just cardiology or neurology in general.

Look for terms like:

• “Autonomic specialist”
• “POTS specialist”
• “Dysautonomia clinic”
• Experience treating conditions like POTS, NCS, orthostatic intolerance, or small fiber neuropathy

Pro tip: You can often find this info in the physician’s bio, clinic description, or medical society memberships.

2. Check Their Credentials and Affiliations

A strong professional background can tell you a lot. Start by checking:

• Where they trained (residency/fellowship)
• Whether they’re board-certified in relevant specialties (neurology, cardiology, internal medicine, etc.)
• If they’re affiliated with autonomic-focused institutions or organizations like Dysautonomia International, American Autonomic Society, or Johns Hopkins Autonomic Center

These affiliations often signal that the provider is engaged with current research, best practices, and continuing education—important in a field that’s still evolving.

3. Read Patient Testimonials—But Read Between the Lines

Patient reviews can offer a lot of insight. Are people saying the doctor listened, took them seriously, and understood the condition? That’s a green flag.

That said, take online reviews with a grain of salt. One negative review doesn’t necessarily reflect the full picture—especially if it’s about wait times or scheduling. Instead, look for patterns. If multiple people say the provider was dismissive or unfamiliar with dysautonomia, that’s worth noting.

Bonus tip: Try searching for testimonials in dysautonomia support groups or forums. Firsthand patient stories often go beyond what you’ll find on official review platforms.

4. Prioritize Doctors Who Truly Listen

This might sound simple, but it’s huge: your doctor should listen to you.

Dysautonomia symptoms can be wide-ranging and hard to explain. That’s why your provider should make you feel:

• Heard
• Believed
• Respected

They should ask follow-up questions, look at your history holistically, and be willing to think outside the box. If you walk out of an appointment feeling dismissed or unheard, that’s not the right fit—no matter how impressive their credentials are.

The best experts treat you like a partner in your care, not a puzzle to be solved quickly.

5. Don’t Be Afraid to Get a Second Opinion

Dysautonomia is complex. No one gets it perfectly right every time. If something doesn’t sit right—or if a treatment plan isn’t helping—it’s perfectly okay to seek another perspective.

A second opinion can:

• Confirm you’re on the right track
• Offer new insights or approaches
• Help you feel more confident in your next steps

You deserve a team that works for you—and sometimes that means trying a few doors before finding the one that opens.

Conclusion

Finding the right expert for dysautonomia isn’t about chasing a single “perfect” doctor—it’s about building a care team that understands the full picture of what you’re going through. From neurologists and cardiologists to mental health professionals and primary care providers, each member of your team brings a different piece of the puzzle. When those pieces fit together, you get care that’s not just symptom-focused—but whole-person focused.

The journey to diagnosis and management can be long, and at times, deeply frustrating. You might be passed from one doctor to another, hear conflicting advice, or be told that your symptoms don’t match the textbook. But here’s the thing: you live in your body every day—you know when something’s not right. Trust that instinct. Keep pushing. Keep asking questions. Keep seeking out providers who take the time to listen.

You deserve answers. You deserve a team that works with you—not just on you.

If you’re looking for someone who truly understands dysautonomia, both medically and personally, Dr. Sarah Diekman is here to help. At Diekman Dysautonomia, our mission is to offer compassionate, expert care tailored to your needs.

Ready to take the next step? Call 833-768-7633 to schedule a consultation and start building your care team with people who get it.