Demystifying POTS

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.

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What is POTS?

POTS Unveiled

POTS stands for Postural Orthostatic Tachycardia Syndrome. That is a lot of big words (which is why we jump to the acronym POTS). But let’s take a moment to look at the words. I promise, it will help make 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.

When we put those together, we can see that the name P.O.T.S. just describes a group of symptoms focused around an increased heart rate when in an upright posture. Why is that important? Because one of the things I will return to several times in this article is that POTS is not really a standalone illness. The fancy name is just telling you that you have a bunch of symptoms that often go together resulting in a racing heart when you sit or stand up.

At its most basic level, POTS is an irregularity between maintaining blood pressure and heart rate. It’s how your nervous system relates to your heart and vascular system, which delivers blood to all your organs and body parts.

POTS is a Type of Dysautonomia

Dysautonomia is another unnecessarily complicated word. The prefix “dys–” just means “bad,” “ill,” “impaired,” etc. And autonomia is related to your autonomic nervous system — that involuntary or automatic part of your body functioning without your conscious decision. So “dysautonomia” is a disorder or dysregulation of your autonomic (i.e. subconscious) body processes.

In the case of POTS, the body doesn’t properly maintain blood flow to the brain and other body systems. Blood pressure drops, which results in rapid heart rate.

The 3 Types of POTS

There are three major types of POTS: autoimmune, neurogenic, and adrenergic.

• 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.

It is possible for individuals to have all three types of POTS together, which can complicate diagnosis and treatment. Patients with multiple types of POTs can have a myriad of seemingly unrelated mystery symptoms, including anxiety and panic attacks.

Connected Conditions

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.

POTS & GI Dysfunction

Common GI tract disorders include irritable bowel syndrome (IBS), dysbiosis, and SIBO.

The GI tract can affect the central nervous system and peripheral nervous system. 75% of all your neurotransmitters are produced in your gut, 50% of your dopamine (your attention neurotransmitter) and 90% of your serotonin (your happy mood regulatory neurotransmitter) come from your gut. Furthermore, 90% of communication between your gut and your brain is from your gut to your brain.

This means that any GI disorder can potentially affect your central nervous system, which can then impact your peripheral nervous system. In fact, I’ve had patients who have seen significant improvement in their POTS symptoms simply by addressing their gut health with certain dietary interventions. Therefore, it’s 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).

All cells in the body can produce histamine to varying degrees. Mast cells and eosinophils, which are associated with allergies, are the primary players, but it is important to understand that every cell in the body can be involved in this process. Histamine blockers, such as Claritin and Pepcid, can be useful in blocking the response. Other substances, such as quercetin and low-dose naltrexone, can help stabilize the immune system and manage this response as well.

MCAS, chronic Lyme, POTS, and dysautonomia look very similar because of the significant overlap in symptoms. Therefore, it is essential to understand the role of histamine and mast cells in the body in order to address the underlying issues effectively. By doing so, it is possible to manage symptoms and improve overall health.

POTS & Tick-Borne Illnesses

The next illness to consider are tick-borne illnesses, often referred to as Lyme disease, but actually includes a range of conditions. Over 50% of people with Lyme disease have an associated tick-borne illness, so it’s not just about Lyme. This stealth infection can hide in your immune system, causing low-grade inflammation. This inflammation can be particularly related to neurogenic POTS and autoimmune POTS, as it can cause dysregulation in the immune system. Therefore, testing for vector-borne illnesses such as bartonellosis is crucial for managing this illness.

Tick-borne illnesses can present with a range of symptoms, such as fatigue, brain fog, joint pain, and headaches. Because tick-borne illnesses are often overlooked or misdiagnosed, it’s important to work with a healthcare provider who is knowledgeable about these conditions and can provide appropriate testing and treatment. By identifying and addressing tick-borne illnesses, individuals with POTS may be able to reduce their symptoms and improve their overall quality of life.

POTS & Mold Toxicity

Mold is a significant factor that can affect your immune system and disrupt the functions of your neurological system and GI tract. This immune system disruption can affect your adrenaline levels and ultimately result in neuropathy. In many cases, mold or toxin exposure can lead to secondary responses such as chronic fatigue syndrome (CFS) and POTS. Therefore, it is essential to identify if there is mold in your house, school, or any place you have spent a considerable amount of time – and also whether you have detoxification issues – in order to effectively treat underlying POTS.

We have built a robust section exploring Mold & CIRS. You can begin here:
Mold & CIRS

Connecting the Dots of POTS Symptoms

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

Understanding the Four Key Foundations

As a medical doctor in central Virginia, I have worked with many patients that have been referred to me for POTS. One thing I have noticed is that many physicians skip these foundational treatments and go straight to medications like Adderall for focus and attention, midodrine to increase blood pressure, or fludrocortisone to increase blood volume.

Before jumping to medications, I recommend four foundations that should be addressed first. In many cases, we can avoid prescription medications and their side effects by addressing these foundational areas.

Foundation 1: Electrolytes

People with POTS do not maintain adequate levels of sodium, magnesium, and trace minerals. While the current healthcare system focuses on sodium chloride, it often overlooks the magnesium, potassium, and other important minerals. Trace minerals are also important in treating POTS. Ideally, individuals with POTS should consume anywhere from 2–4 grams of trace minerals a day. Without enough of these minerals, patients will not experience relief from their POTS symptoms.

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

In addition to these foundations, other modalities can be used to treat POTS. These include 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 also be used. Low-dose naltrexone is another potential treatment option.

Next Steps

Understanding and managing POTS can indeed be overwhelming, but realizing that it is intertwined with various other conditions offers a pathway to effective treatment. By first addressing foundational health aspects like electrolytes, fluids, compression, and targeted exercise, and then exploring deeper connections with conditions like hypermobility, MCAS, Mold & Lyme, you equip yourself with a comprehensive strategy toward wellness.

Empower yourself by proactively participating in your health journey, seeking knowledgeable healthcare support, and staying informed and optimistic about your capacity to influence your health outcomes positively. Remember, POTS is a manageable syndrome, and with the right approach, you can significantly enhance your quality of life. Let this knowledge be an invitation to take control, engage deeply with health experts, and move steadily toward recovery and optimal well-being.

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.

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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.

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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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