Mystery Illnesses

Demystifying POTS

This Mystery Illness Sweeping Our Country Doesn’t Need to Mystify You


Aaron Hartman MD

May 7, 2024

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    In recent years, POTS and dysautonomia have flooded social media. I’ve seen repeated Instagram stories of young women describing dizziness, lightheadedness, skin rashes, itchy skin, horrible fatigue, anxiety, poor sleep, and a host of other seemingly unrelated symptoms.

    Do you Suspect That You or a Loved One are Affected by POTS? Are you overwhelmed by the mysterious collection of symptoms?

    While this seems new and mysterious, I have been seeing patients like this for over 15 years, starting when POTS was a rare condition. Now it’s something I see on a weekly basis in my clinic. It’s estimated that up to 3 million people worldwide are affected by POTS, though most don’t know they have it yet.

    In this article, I’ll address this phenomenon affecting millions of Americans, especially young females. I’ll talk about what causes it, what to look for, and how you might actually start a treatment plan to help improve your symptoms.

    If you’re affected with these symptoms, know that you’re not alone on this journey and it’s not all in your head. POTS is diagnosable and treatable. You can get relief from these seemingly mysterious symptoms.


    What is POTS?

    POTS stands for Postural Orthostatic Tachycardia Syndrome. It describes a group of symptoms centered on an abnormally fast heart rate when you stand up, caused by the body failing to properly regulate blood flow and blood pressure against gravity. It’s not a disease in itself. It’s a pattern that sits downstream of other conditions.

    Let’s take a moment to look at the words, because it makes POTS less mysterious:

    • Postural is related to your posture (OK, this one is easy).
    • Orthostatic is just a fancy word for anything relating to or caused by an upright posture.
    • Tachycardia is a fancy word for increased heart rate. If you’ve watched medical dramas, you’ve probably heard doctors and nurses shouting out “tachycardia” whenever the heart monitor starts beeping rapidly.
    • Syndrome is a group of symptoms which consistently occur together.

    Put together, the name just describes a group of symptoms focused around an increased heart rate in an upright posture. Why does that matter? Because one of the things I’ll return to several times here is that POTS is not really a standalone illness. The fancy name is only telling you that you have a bunch of symptoms that go together, resulting in a racing heart when you sit or stand up.

    POTS is a Type of Dysautonomia

    Dysautonomia means dysregulation of the autonomic nervous system (the part of your body that runs automatically without conscious decision). In POTS, that dysregulation means the body doesn’t properly maintain blood flow to the brain when you stand. Blood pressure drops, and the heart rate climbs to compensate.

    The prefix “dys–” means bad or impaired, and “autonomia” refers to your autonomic nervous system. That involuntary system governs heart rate, blood pressure, digestion, temperature, and much more.

    The 3 Types of POTS

    There are three major types: autoimmune, neuropathic, and adrenergic. Autoimmune POTS involves autoantibodies attacking nerve endings that regulate blood pressure. Neuropathic POTS involves loss of nerve endings in the feet. Adrenergic POTS involves adrenaline spikes that raise blood pressure. Having more than one type at once is common and complicates both diagnosis and treatment.

    • Autoimmune POTS involves autoantibodies that react on the nerve endings that affect blood pressure and heart rate regulation.
    • Neuropathic POTS involves a loss of nerve endings in the feet and results in irregular blood pressure, usually causing the feet and hands to turn blue or become discolored. Neuropathic POTS often causes blood pressure drops and resulting increases in heart rate.
    • Adrenergic POTS occurs when spikes in adrenaline, epinephrine, and norepinephrine cause blood pressure to rise, resulting in a fast heart rate and elevated blood pressure.

    Patients with multiple types can have a myriad of seemingly unrelated mystery symptoms, including anxiety and panic attacks.


    Is this you?


    Connected Conditions

    POTS rarely travels alone. In my clinic the conditions that show up alongside it most often are hypermobility, GI dysfunction, mast cell activation syndrome, tick-borne illness, and mold toxicity. Identifying which of these is driving an individual case is what makes treatment work, because POTS itself is the downstream result rather than the root cause.

    POTS & Hypermobility

    POTS is a syndrome (a group of related symptoms). In another article, I discuss hypermobility as a “super syndrome” a group of related syndromes. Time and time again, I have observed that patients with POTS (and several of the conditions listed below) are also hypermobile. It is the surprising common denominator. If you think you might have POTS, I encourage you to also investigate whether you are hypermobile.

    Read Next

    POTS & GI Dysfunction

    Gut disorders like IBS, dysbiosis, and SIBO can drive POTS directly. Roughly 75% of your neurotransmitters are produced in the gut, and about 90% of the communication between gut and brain travels upward. I have had patients whose POTS symptoms improved substantially from dietary intervention alone.

    The GI tract affects both the central and peripheral nervous systems. Fifty percent of your dopamine and ninety percent of your serotonin originate in the gut. Any GI disorder can therefore affect your central nervous system, which in turn affects your peripheral nervous system. It is crucial to consider GI dysfunction as a potential underlying cause of POTS.

    POTS & MCAS

    Mast Cell Activation Syndrome (MCAS) is a condition in which a person experiences repeated episodes of anaphylaxis (allergic reactions like hives, swelling, change in blood pressure, difficulty breathing, or diarrhea). MCAS, chronic Lyme, POTS, and dysautonomia look very similar because their symptoms overlap heavily, which is why histamine and mast cell behavior has to be part of the workup.

    All cells in the body can produce histamine to varying degrees. Mast cells and eosinophils are the primary players, but every cell can be involved. Histamine blockers such as Claritin and Pepcid can help block the response. Quercetin and low-dose naltrexone can help stabilize the immune system and manage the response as well.


    Not sure whether mast cells are part of your picture? Find out in 3 minutes

    POTS & Tick-Borne Illnesses

    Tick-borne infections can drive POTS by causing low-grade immune dysregulation and inflammation, particularly in the neuropathic and autoimmune types. Over 50% of people with Lyme disease carry an additional tick-borne infection, so testing for co-infections like bartonellosis matters as much as testing for Lyme itself.

    These stealth infections can hide in your immune system. Symptoms include fatigue, brain fog, joint pain, and headaches (which is exactly why they are so often overlooked or misdiagnosed). Working with a provider who is knowledgeable about these conditions is what makes appropriate testing and treatment possible.


    Wondering if an infection kicked yours off? Find out in 3 minutes

    POTS & Mold Toxicity

    Mold exposure can disrupt the immune system, the neurological system, and the GI tract at once, and in many cases leads to secondary conditions including chronic fatigue syndrome and POTS. Identifying mold exposure in a home, school, or workplace — and assessing whether you detoxify well — is often necessary before POTS will respond to anything else.

    This immune disruption can affect adrenaline levels and ultimately result in neuropathy. It is essential to identify whether there is mold in a space where you have spent a considerable amount of time.


    Not sure if toxic burden is your driver? Find out in 3 minutes

    Connecting the Dots

    Perhaps you can now begin to see that POTS is not a standalone illness. Rather, POTS is a result of other underlying conditions. Understanding the connection between POTS and other illnesses is crucial in developing an effective treatment plan. By addressing the root cause of POTS, individuals can improve their overall health and well-being.


    Treating POTS

    Before reaching for medication, I address four foundations: electrolytes and trace minerals, fluid intake, compression, and targeted exercise. Many physicians skip straight to prescriptions like midodrine or fludrocortisone. In a large share of cases, working the foundations first means those medications and their side effects can be avoided entirely.

    sparkling water bottles

    Foundation 1: Electrolytes

    People with POTS do not maintain adequate levels of sodium, magnesium, and trace minerals. The current healthcare system focuses on sodium chloride and overlooks magnesium, potassium, and other important minerals. Ideally, individuals with POTS should consume anywhere from 2–4 grams of trace minerals a day. Without enough of these, patients will not experience relief.

    young woman drinking a glass of water

    Foundation 2: Fluids

    People with POTS need to drink more water. Clean water free of chemicals, chlorine, and pesticides is ideal. Mineral water that is rich in trace minerals is even better. Individuals with POTS should consume anywhere from 4-6 liters (or more) of water per day based on their symptoms, blood pressure, and other factors that their healthcare provider can help them with.

    Foundation 3: Compression

    Compression stockings, hose, or even wearing Lycra like Spanx can help push the fluid from the tissues back into the veins and the central nervous system, thus helping with blood pressure. Compression can be really powerful for people with POTS and this alone can have a big impact for many patients.

    Foundation 4: Exercise

    Certain types of exercises that build up the muscles in the legs and calves can also help with the body’s regulatory systems. The Children’s Hospital of Philadelphia has had up to an 80% response rate using certain exercises alone.

    Other Treatments

    Beyond the foundations, other modalities can help: medications, acupuncture, massage, IV therapies, mind-body medicine, and certain herbs. For those with mast cell issues, quercetin can be helpful, and basic histamine medications like Claritin and Pepcid can be used. Low-dose naltrexone is another potential treatment option.


    Next Steps

    Managing POTS can feel overwhelming, but the fact that it’s intertwined with other conditions is good news: it means there are real levers to pull. Start with the foundations: electrolytes, fluids, compression, and targeted exercise. Then, work on the deeper connections to hypermobility, MCAS, mold, and Lyme.

    Remember that POTS is a manageable syndrome. With the right approach, you can meaningfully improve your quality of life.


    Common questions about POTS

    Is POTS curable?

    POTS itself isn’t usually described as curable, but it is frequently reversible in the sense that matters: when the underlying driver is identified and treated, symptoms can resolve substantially or entirely. Because POTS is downstream of something else, the honest answer depends on what that something else is.

    Can POTS go away on its own?

    Sometimes, particularly in adolescents and in cases that followed an acute illness. Many teenage patients improve significantly over several years. For adults whose POTS is tied to connective tissue, mast cell, or toxic burden issues, spontaneous resolution is much less common without addressing the driver.

    What triggers POTS?

    The most common triggers I see are a viral illness, a tick-borne infection, a period of mold exposure, surgery, pregnancy, or a significant physical or emotional stressor. In many patients the groundwork, often hypermobility, was present long before the trigger arrived.

    Is POTS an autoimmune disease?

    One of the three types is. Autoimmune POTS involves autoantibodies acting on the nerve endings that regulate blood pressure and heart rate. The neuropathic and adrenergic types work differently, and a single patient can have more than one type at once.

    How is POTS diagnosed?

    The core test is a sustained heart rate increase on moving from lying to standing, measured with a tilt table test or a standing test. The more useful question, once POTS is confirmed, is what is underneath it, which is what the rest of the workup is for.


    Want a head start on that workup?
    Map your pattern in 3 minutes

    Prefer to Watch?

    A lot of the content in this article is covered by Dr. Hartman in these two videos. If you prefer to watch, we’ve got you covered.


    Further Reading

    POTS

    What It Really Is & Why It Happens
    Patrick Ussher

    Postural Orthostatic Tachycardia Syndrome, also known as POTS, is a collection of symptoms that describes not disease but a patient's condition. Only five years ago this entity was thought to be psychiatric, but now we're understanding the under lying causes are many. Ten to twenty percent of POTS is autoimmune. Another percentage of POTS deals with dysregulation of the nervous system between the “fight or flight and the weed and feed system”, known as the autonomic nervous system. There's also a form of POTS overdrive of the adrenaline or adrenergic system. In this book, the author dives into one of these paradigms dealing with the traumatized brain and how that can cause be one of the causes of POTS. The author dives into brain retraining, also known as dynamic neural retraining, and how this can be used as a treatment modality. Ultimately, there are many syndromes like POTS that need to have many different modalities and many different treatments in order to get patients better. This book deals with one of the causes of POTS and how a functional medicine practitioner would look at someone who has POTS.

    The Lyme Solution

    A 5-Part Plan to Fight the Inflammatory Auto-Immune Response and Beat Lyme Disease
    Darin Ingels ND

    Lyme Disease is a great imitator and can be difficult to eradicate in certain individuals. This book reviews the myriad presentations of Lyme Disease and reviews the complex treatment options that can be implemented in those who do not respond to standard of care treatments.

    Why Can’t I get Better?

    Solving the Mystery of Lyme and Chronic Disease
    Richard Horowitz MD

    Dr. Horowitz is an internal medicine physician who moved his practice Hudson Valley, New York almost 30 years ago. He had no idea he was moving into the Lyme capital of the country. Over the years, treating many patients with Chronic Lyme Disease, Dr. Horowitz has developed a very specialized practice and way of evaluating and treating Lymes and MSIDS patients. He outlines his 16 point MSIDS map and treatment paradigm in this book. He follows the ILADS model. His book is a good overview of this treatment paradigm and he is a thought leader in this arena. He is not a functional medicine practitioner per sea and so doesn’t necessarily follow the functional medicine matrix systems based model. This book is great for anyone who currently has or is interested in Lyme’s, Multiple Systems Infectious Disease Syndrome or associated diseases.

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