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What Is POTS: Your Guide to Symptoms, Causes, and Treatments

Written by Dr. Ruscio on August 9, 2023

Written by Dr. Ruscio on August 9, 2023 — Reviewed by Hilary Watts

What we know about POTS, what we don’t, and what you can do about it.

• What is POTS|
• What Causes POTS|
• POTS Treatment Options|
• Knowledge is Power|

If you’ve been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), there’s a decent chance you might have more questions than answers. What is POTS? How common is it? What do doctors and scientists really know about it? What caused it? Is it curable?

You may also be seeing this post because you’re searching for answers for your mystery symptoms: shortness of breath, heart palpitations, muscle weakness, and/or light-headedness every time you stand up. 

Although awareness is rising, there is still a lot of confusion surrounding POTS in the medical community, and there are many unknowns. 

But we are starting to learn more about what POTS is (and what it isn’t), and what kinds of holistic treatments might help. 

Let’s dive into what we know. 

What is POTS?

Postural orthostatic tachycardia syndrome (POTS) is also sometimes referred to as postural tachycardia syndrome and abbreviated PoTS instead of POTS. It’s the same thing and is broadly defined as a chronic and complex disorder of the autonomic nervous system (ANS) that affects multiple organ systems [1, 2]. 

Put in more plain language, it’s a syndrome that can negatively impact the proper functioning of the systems of your body that occur automatically—circulation, breathing, heartbeat, lung function—things you don’t consciously decide to do. That’s still pretty vague, so let’s break it down.

To help you get a better grip on a POTS diagnosis (or potential diagnosis if you suspect you might be dealing with POTS), it’s helpful to first understand what a “syndrome” is generally, which is different than a “disease” or “illness,” when it comes to how medical professionals (cardiologists in the case of POTS) define things.

A syndrome is a collection of symptoms with no known direct underlying cause. Sometimes there’s a vast array of possible symptoms, and you only need to display a handful in order to be diagnosed [2]. Sometimes there are one or two super common symptoms that nearly every patient has, but the rest are kind of a grab-bag from person to person. For example, if there are 10 possible symptoms of a particular syndrome, you might need to have at least five in order for a doctor to diagnose the syndrome.

Symptoms and Diagnostic Criteria for POTS

POTS can be a challenging diagnosis because of the wide range of organs it has the potential to affect, but it’s primarily characterized by symptoms that worsen with standing, and significant elevations in heart rate [1].

Up to 1% of the US population is suspected to have POTS, though this is hard to determine due to the challenges surrounding diagnostics. Younger women (12–50 years old) are those most commonly affected by POTS and typically start experiencing symptoms early on in adolescence, around age 14. 

The National Institute of Health (NIH) states that women are most often early in their careers or in education when affected, and the condition can have a debilitating effect on their lives [1].

In order to be diagnosed with POTS, there are two general criteria a person must meet [1]:

• Orthostatic intolerance: Symptoms that worsen when moving from a lying/seated to a standing position and that improve after returning to a lying position (more on this below).
• Tachycardia: Heart rate that increases by ≥30 bpm OR is ≥120 bpm that occurs within 10 minutes after moving from a lying/seated to a standing position. The heart rate increase is ≥40 bpm in adolescents.

These two symptoms can’t occur in the presence of hypotension (low blood pressure) or other coexisting conditions for a POTS diagnosis, and the duration of the symptoms must be equal to or longer than three months. Here are some additional exclusions [1]:

• Occurs without significant hypotension: the above criteria are met without a ≥20mmHg decrease in systolic blood pressure, which would otherwise be diagnosed as orthostatic hypotension
• Exclusion **: no other coexisting conditions or medications that would explain the tachycardia. These could include:
  • Deconditioning (a complex process of physiological change following a period of inactivity, bed rest, or sedentary lifestyle that may result in mental and physical functional losses [3]
  • Infection
  • Fever
  • Hyperthyroidism
  • Pheochromocytoma (a small vascular tumor of the adrenal medulla, causing irregular secretion of epinephrine and norepinephrine, leading to attacks of raised blood pressure, palpitations, and headache
  • Anemia
  • Dehydration
  • Anxiety disorders
  • Use of heart medication, like sympathomimetics

** Please note that this means that POTS is a diagnosis of exclusion, meaning that all other causes for these symptoms must be ruled out before giving a POTS diagnosis.

Orthostatic intolerance symptoms for a POTS diagnosis may include [4]:

• Lightheadedness (90%)
• Fainting/near-fainting (90%)
• Palpitations (90%)
• Racing heart (90%)
• Shortness of breath (80%)
• Chest pain (70%)
• Tremor (70%)
• Blurry vision (70%)
• Sweating

Other symptoms of POTS that are commonly present but not related to body position (and thus not used diagnostically) include [4] :

• ≥ 90% of POTS patients:
  • Brain fog/ Cognitive issues
  • Persistent nausea
  • Headaches
  • Chronic fatigue
• ≥ 80% of POTS patients:
  • Abdominal pain
  • Muscle pain/weakness
  • Poor circulation (cold hands and feet)
• ≥ 70% of POTS patients have:
  • Abdominal bloating
  • Constipation 
  • Paresthesias (tingling in hands)
  • Neuropathy
• Other common findings [1, 4]:
  • Diarrhea
  • Sleep disturbances
  • Difficulty exercising (may or may not be medication-related)
  • Anxiety
• Findings in the presence of suspected mast cell disorders [1]:
  • Flushing
  • Hives
  • Excessive urination
  • GI symptoms: diarrhea, bloating, constipation, abdominal pain, nausea

This might seem like a lot, and that’s because it is a lot. POTS is a multifaceted and somewhat confusing syndrome. Because there is no single known underlying cause—or even an agreed-upon set of factors—it is an elusive condition that has made it difficult to recognize, understand, and treat.

Though POTS is a medically-confirmed diagnosis, it has been historically debated as a valid diagnosis in the medical community, which has led to significant barriers to treatment [1]. The NIH states that the misdiagnosis of POTS is common (note: some sources say up to 75% are misdiagnosed), despite the clear clinical definition. Many medical professionals are unfamiliar with the diagnosis and treatment options for this condition [1]. 

The backwardness of the way medical insurance works in the United States notwithstanding, when even the medical community can’t agree on certain aspects of the disease (or are unfamiliar), proper treatment can be hard to nail down (and get covered by your insurance).

That being said, there are diagnostic codes for POTS, as of October 1, 2022, which should lend credibility to the diagnosis and the patients dealing with the wide array of symptoms. Research on POTS is severely lacking, and there has been no investigation into its presentation as we age or its long-term effects on the body [1]. The hope in giving POTS a specific code is to create a push for more national research on this condition, educate providers on POTS, and shunt more resources into POTS treatment.

Diagnostic Work-up for POTS

While the criteria for diagnosis of POTS is clear and standardized, the diagnostic work-up and physical exam may vary by the cardiologist or neurologist assessing you. Heart rate changes are measured between sitting and standing either manually or with a pulse oximeter. Blood pressure is also monitored manually to ensure there is no significant decrease in the first three-to-10 minutes of standing.

Though less common, the “gold standard” for evaluating POTS is through a Tilt Table Test. In this test, the following steps take place [5]: 

• The patient is strapped to a table where they lie face-up for at least 5 minutes, but preferably from 20–45 minutes. Nitroglycerin (a vasodilator) is given orally.
• The table is tilted to an upright position, at about a 70-degree angle.
• The patient is monitored for syncope or pseudo-syncope (head drop, eyes unwillingly close).
• If present, these findings strongly indicate a POTS diagnosis.
• The test is ended upon syncopal findings or after 15 minutes.

The biggest challenges with diagnosing POTS are the lack of clinical exposure many medical professionals have to it and the overlapping symptoms with other more common conditions.

What Causes POTS?

There are no universally agreed upon risk factors or causes of POTS. Most experts in cardiology and neurology agree that it’s multifactorial with high variability between patients. The more specific subtypes of POTS, which are also broadly defined and poorly understood, further muddle the search for root causes.

A National Health Institute (NIH) meeting of experts in 2019 determined that while POTS often occurs after a stressor to the immune system, the underlying pathology is complex and likely derived from more than one factor. A viral illness is thought to be one of the more common of these initial stressors and is self-reported in 20–50%. Other common stressors include [1]:

• Upper respiratory infection
• GI infection
• Physical trauma (head injuries/concussion)
• Initial menses (hormonal fluctuations)
• Pregnancy
• Surgery

Additionally, a genetic predisposition or presence of co-existing autoimmunity and/or a connective tissue disorder (such as Ehlers-Danlos syndrome) is thought to play a significant role in making a person more susceptible to POTS [6].

After the triggering event, the symptoms can come on rapidly or progressively worsen over time, further adding to the complexity and variable presentation of POTS. While recovery is possible, most patients have chronic symptoms that can go through periodic worsening or “flares” [1].

Overall, POTS is characterized by several broad mechanisms that include [1, 6]:

• Nervous system dysregulation (autonomic)
• Immune dysfunction/ antibodies toward the blood vessels and nervous system
• Abnormalities in the renin-angiotensin-aldosterone-system (RAAS), which controls blood volume
• Venous pooling (when your blood doesn’t flow toward your heart properly in your veins due to valve issues. It may actually flow backwards or pool.)
• Cardiovascular deconditioning
• Decreased cerebral spinofluid (CSF)
• Altered cerebral blood flow
• Intracranial hypotension (negative pressure in the brain cavity)
• Disrupted blood-brain barrier (similar to leaky gut)
• Neuroinflammation

There are three subtypes of POTS, which include [6]:

• Hypovolemic: low blood volume
• Hyperadrenergic: increased sympathetic activity and elevated levels of catecholamines (epinephrine/ adrenaline, norepinephrine)
• Neuropathic: damage to a smaller nerve that affects the ANS and blood vessel flow

Many patients are not further classified into one of these subtypes after receiving a POTS diagnosis. There is significant overlap in presentation across the three types, with no treatments that are specific to an individual type [1]. In most cases, these categories do not shed further light on the underlying cause of POTS in a particular patient.

POTS Treatment Options

Because there’s still so much to learn as to the root cause of POTS, it can be difficult to come up with a treatment plan that actually addresses the underlying issues. For this reason, the conventional approach to treatment tends to focus on managing symptoms. The functional health approach is not only to address symptoms, but also to promote nervous system regulation and regular exercise.

The Functional Health Approach to Treating POTS

The functional approach to treating pots is three-fold: calming the sympathetic nervous system, exercising to increase blood flow and blood volume, and eating a low-inflammation, high-salt diet. Research in the area of POTS treatment beyond just symptom management is shockingly lacking, and more work needs to be done to better understand treatment options across all categories.

Calming the Sympathetic Nervous System

However, (based on limited evidence) treatments that work to balance the autonomic nervous system by decreasing stress and increasing vagal tone are great starting points for POTS treatment. This can be tracked through heart rate variability. This means things like [6]:

• Biofeedback
• Cognitive behavioral therapy (CBT)
• Exercise
• Physical therapy
• Occupational therapy
• Guided meditation
• Yoga
• Deep brain stimulation
• Transdermal vagal stimulation (research pending)

Other practices that support heart rate variability and vagal tone include singing (music therapy, chanting, mindfulness-based stress reduction, and EFT (Emotional Freedom Technique). These interventions and practices help reduce sympathetic nervous system activity, which appears to be central in treating POTS and alleviating symptoms.

Exercise Program for POTS

It also seems to be mostly agreed upon that exercise—both weight-bearing and aerobic exercise—can be a helpful intervention in the treatment of POTS. That’s because exercise increases blood volume, promotes healthy circulation, and boosts mood/mental well-being and quality of life [7]. Exercise as treatment is included in both functional and conventional approaches to POTS.

Depending on the person’s current level of physical fitness, they may need to start with seated or horizontal exercises to prevent heart rate increases and exacerbation of symptoms. This includes [7]: 

• Rowing
• Swimming
• Recumbent bike
• Pilates
• Resistance bands
• Physio ball

If symptoms are severe, they will likely benefit from observation during exercise (like with a physical therapist) to prevent syncope and injuries. As physical fitness improves, the intensity, duration, and frequency of exercise can all be increased to functional capacity (the body’s physical tolerance), which can also be more easily achieved with professional guidance.

If joint hypermobility is present (usually a symptom of Ehlers-Danlos), non-weight-bearing exercise like swimming or rowing should be initiated first to prevent musculoskeletal injuries, even if POTS symptoms aren’t severe. Wearing ankle, knee, elbow, and wrist braces can also be highly beneficial for preventing injuries, and physical therapy might be preferred for those with significant instability [7].

It’s essential that the exercise routine has a lower body and core strength training component, as this will increase blood return to the heart. Results from a 2018 literature review lead to recommendations to start with weight lifting once per week for 15–20 minutes, working up to two times a week, 30–40 minutes per session. However, this will vary based on the severity of POTS symptoms [7]. 

Diet

As with every holistic or functional approach to a chronic illness, diet can play an important role in treatment. Since the research is lacking specifically on the role of diet in POTS, the next step is to look at the common features, which include autoimmunity, general immune dysregulation, and chronic inflammation. Diets that help address these issues show promise in the treatment of POTS.

A small study on 20 women with POTS found that following a gluten-free diet for 1 month led to a 34% reduction in their autonomic symptoms, particularly orthostatic intolerance and GI symptoms [8].

Another small study of 14 participants found that a high-salt diet significantly reduced standing heart rate at rest, heart rate change upon standing up, and total norepinephrine (though they were still higher compared to healthy controls [9]. 

The Conventional Approach to Treating POTS

The conventional approach to POTS treatment tends to focus on the symptoms, although there is no standardized protocol [1].

The main focus currently in the conventional management of symptoms is to increase blood volume. A few ways to increase blood volume include [1, 7]:

• Oral hydration
• Increasing salt intake (up to 10g per day) w/ or w/o increased (but balanced intake) in potassium. Combining this with increased water intake (up to 3 liters per day) is essential, as they work best when implemented together.
  • Vitassium and Klaralyte supplements balance sodium + potassium and are marketed for those with POTS and Ehlers-Danlos syndrome. However, these can cause nausea and vomiting in some people, so start with 1–2 capsules per day and work your way up.
• Sleeping with your head elevated (use an extra pillow under your head or, ideally, elevate the head of the bed 4–6 inches off the ground with bed risers)
• Increasing pressure in the blood vessels toward the heart:
  • Compression stockings that cover the abdomen
  • Squeezing a ball with your hands
  • Crossing legs while seated
  • Squatting
  • Physical activity, often guided by a physical therapist
  • Cooling of the skin when hot
    • Fan
    • Spray bottle
    • Ice packs
    • Cooling towel

Conventional medical professionals also use pharmaceuticals to help treat the symptoms of POTS. These medications mostly focus on the circulatory system (and blood flow), but some also may address psychiatric or neurological issues as well.

• Beta-blockers like propranolol (mitigate heart rate increases and lower sympathetic overactivity)
• Fludrocortisone (expands blood volume)
• Alpha-agonists like clonidine (lower sympathetic overactivity)
• Stimulants like methylphenidate (vasoconstrict the arteries)
• Antidepressants (in the presence of psychiatric comorbidity)
• Benzodiazepines (in the presence of psychiatric comorbidity or seizures)
• Pain medications if indicated (such as in Ehlers-Danlos syndrome)

It’s worth flagging that benzodiazepines are highly habit-forming, and taking them on a regular basis can lead to addiction and drug dependence. Try to avoid taking this class of drugs with any regularity, if at all possible.

Knowledge is Power

POTS is not the most common chronic illness, but due to the medical community’s poor understanding of it, it could be more common than we think. Understanding what exactly POTS is and how it manifests is a great place to start in the search for treatment, even if the medical community hasn’t quite found the answers to its root cause.

It’s also important to know that POTS is often accompanied by other comorbidities, including autoimmunity. Relaxing the sympathetic nervous system, regular (safe) exercise, and a healthy diet are the first three steps to take in your quest to address POTS. We’re here to help. Reach out to our clinic to set up an appointment.

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