Updated: Dec 1, 2022
Not a pathology we typically learn in school. I don't remember it in any of the textbooks I read, and I am a self-proclaimed nerd; I do the assigned reading. Not even a pathology many practitioners are even aware; it was only first recognized about 25 years ago.
I have yet to diagnose this condition in my own clientele, but I have cared for clients who were already diagnosed through the years and offered consultations for practitioners who were unfamiliar and suspected this fell more into a functional medicine specialty. Easily individuals can be misdiagnosed with anxiety and depression, chronic fatigue syndrome or reflex syncope which may have overlapping symptoms with POTS. More recently even I've had a few clients present with concerns that they may have #POTS which they recognized after scrolling through Tick Tock. #empoweredclientsaremyfavorite
Postural orthostatic tachycardia syndrome (POTS) is a blood circulation disorder characterized by two factors: a specific group of symptoms that frequently occur when standing upright and a heart rate increase from horizontal to standing (or as tested on a #tilttable) of at least 30 beats per minute in adults, or at least 40 beats per minute in adolescents, measured during the first ten minutes of standing.
POTS is diagnosed only when orthostatic hypotension is ruled out and when there is no acute dehydration or blood loss. Orthostatic hypotension is a form of low blood pressure, or a 20mmHg drop in systolic or a 10mmHg drop in diastolic blood pressure in the first three minutes of standing upright.
What is POTS?
A form of #dysautonomia, POTS is a disorder of the autonomic nervous system. This branch of the nervous system regulates functions we don't consciously control, such as heart rate, blood pressure, sweating and body temperature. The key characteristics of POTS are the specific symptoms and the exaggerated increase in heart rate when standing.
Why does Heart Rate Increase Excessively with POTS?
In most individuals with POTS, the structure of the heart itself is normal. POTS symptoms arise from a combination of the following: a lower amount of blood in the circulation, excessive pooling of blood below the level of the heart when upright, elevated levels of certain hormones such as epinephrine (also known as adrenaline since it is released by the adrenal glands) and norepinephrine (mainly released by nerves).
When we stand, gravity pulls more blood into the lower half of the body. In a healthy person, to ensure that a sufficient amount of blood reaches the brain, the body activates several nervous system responses. One such response is releasing #hormones that help tighten blood vessels and cause a modest increase in heart rate. This leads to better blood flow to the heart and brain. Once the brain is receiving enough blood and oxygen, these nervous system responses settle back to normal.
In people with POTS, for unclear reasons that may differ from person to person, the blood vessels don't respond efficiently to the singal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as #lightheadedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain.
Some people with POTS can develop #hypotension (a drop in blood pressure) with prolonged standing (more than three minutes upright). Others can develop an increase in blood pressure (hypertension) when they stand.
Types and Causes of POTS
The causes of POTS vary from person to person and it may happen quickly or develop gradually. Researchers don't entirely understand the origins of this disorder. The classification of POTS is the subject of discussion, but most authorities recognize different characteristics in POTS which occur in some individuals more than others. Importantly, these characteristics are not mutually exclusive. Someone with POTS may experience more than one of these at the same time.
Neuropathic POTS is a term used to describe POTS associated with damage to the small fiber nerves that regulate the constriction of the blood vessels in the limbs and abdomen. Hyperadrenergic POTS is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine. Hypovolemic POTS is a term used to describe POTS associated with abnormally low levels of blood or hypovolemia. Secondary POTS means that POTS is associated with another condition known to potentially cause autonomic neuropathy, such as diabetes, #Lyme disease, or autoimmune disorders such as #lupus or #Sjogren's syndrome.
What Might Someone with POTS Experience?
Again, this does vary from person to person, but often they will complain of severe and/or long-lasting fatigue. Lightheadedness with prolonged sitting or standing that can lead to fainting is another common presentation. Brain fog is especially common, trouble focusing or remembering, even paying attention. Forceful heartbeats or heart palpitations, the feeling of your heart pounding or skipping a beat, is classic. Nausea and vomiting, headaches, excessive sweating, bloatedness, shakiness, and intolerance to exercise or worsening of symptoms when activity increases are additional common symptoms of POTS. Sometimes individuals will report having a pale face or purple discoloration of the hands and feet if the limbs are lower than the level of the heart.
POTS is progressive. It gets worse over time, and in warm environments, such as in the bath or shower, even in a hot room or on a hot day, you will certainly experience worsening symptoms. In situations involving a lot of standing, such as waiting for a bus or shopping, symptoms may be more apparent as well. If fluid and salt intake have not been adequate, such as after skipping a meal, some will experience more symptoms as well.
POTS symptoms may also get worse when you get a common cold or an infection. In severe cases, POTS symptoms can prevent a person from being upright for more than a couple of minutes. This can greatly affect all aspects of personal, school, work, and social life. Although the origin of POTS symptoms is physical, sometimes people attribute the symptoms incorrectly as psychological disorders, often diagnosing anxiety. While some people with POTS have anxiety disorders, as it is already very common among the general population, POTS is not caused by anxiety.
Can POTS be Fatal?
While POTS can be life-changing, it is not life-threatening. One of the biggest risks for people with POTS is falling and hurting themselves when they faint. Not everyone who has POTs faints either, but for those who do, even this is a rare event. If you aren't aware you have POTS though, you may not take precautions against trauma from falls.
Who is Likely to Experience POTS?
More often these people are women or people assigned female at birth, although men or people assigned as male at birth do also develop POTS. One to three million people in the U.S. are diagnosed with POTS, less commonly in young children but certainly does occur in adolescents when symptoms can be truly significant. POTS often occurs after an apparent or confirmed viral illness, such as COVID or mononucleosis, or it can appear after another health event or following surgery, even pregnancy or a head injury. People with certain autoimmune diseases are also more inclinded to suffer with POTS, such as Sjogrens' syndrome, lupus, Lyme and Celiac disease.
POTS can run in the family, yet no single gene has yet to be associated. My thoughts are that certainly if one has a variant in their norepinephrine transporter gene, this may be related, but this seems to affect only a tiny portion of POTS individuals. Among genetic factors, there is a strong association between POTS and various joint hypermobility disorders, including Ehlers-Danlos syndrome. POTS, Ehlers-Donlos and Mast Cell disorders interestingly overlap, some of which have a genetic origin.
POTS and Pregnancy
As a nurse-midwife with a functional medicine speciality, I have had more than one call asking about POTS and pregnancy. In some studies, slightly more than half of pregnant women with POTS actually felt better than their norm during pregnancy which likely relates to the increased blood volume present after those first few weeks. Immune modulation also switches up a bit in pregnancy so most all inflammatory conditions improve, while more allergic responses are common.
Other women have a more variable pregnancy, with either symptoms stabilizing or few do have worsening symptoms. Other complications of pregnancy don't seem to be more common or more significant, and their newborns seem to be as healthy as infants born to those without POTS.
How is POTS Diagnosed?
If I have a client present with these symptoms in my primary care practice, the challenge is discerning the larger picture of all their reported symptoms. Not everyone's most bothersome symptom is the same and many times these symptoms are somewhat downplayed because they've experienced them for months, aren't confident they are significant, and they may accompany a plethora of other symptoms from an autoimmune cascade. Certainly a thorough history and physical exam, alongside blood work, and potentially a standing test or head-up tilt table test can help confirm POTS. Other ways your clinician may evaluate for POTS is testing the Valsalva maneuver, the quantitative sudomotor axon reflex test (QSART), or less commonly, and MRI may be ordered to rule out tumors or other abnormalities.
Keep in mind, asthma and inflammatory bowel disease can also mimic POTS, so can chronic fatigue syndrome, myalgic encephalomyelitis, or other forms of orthostatic intolerance. Fibromyalgia can be confused with POTS, hyperhidrosis, or a number of other issues, including sinus tachycardia.
Tilt Table Test for POTS
During the tilt table test, you are secured on a table while lying flat. Then the table is raised to an almost upright position. Your heart rate, blood pressure and often blood oxygen and exhaled carbon dioxide levels. are measured during this test.
POTS will be strongly considered if your body produces an abnormal heart rate response to being upright, your symptoms worsen when upright, and if you don't develop orthostatic hypotension the first three minutes of testing.
How is POTS Treated?
This is certainly tailored to each individual, because the symptoms and underlying conditions can vary widely. There really isn't believed to be an actual cure, but for most, it can be managed through diet, exercise, and medications. Eating a large meal can make symptoms of POTS worse, as your body redirects a lot of blood to aid in the digestion process, so try smaller, more frequent meals.
The foundation of this diet is drinking frequently throughout the day. For most the goal is about 64 to 80 fluid ounces or about two-to-two-and-a-half-liters each day. Increasing salty foods is also important and adding more salt to foods. Eat broth, pickles, olives, sardines, anchovies, and nuts. This helps keep water in the bloodstream, which helps more blood reach the heart and brain.
Certain foods or drinks can have an adverse effect on POTS symptoms; alcohol almost always aggravates POTS as it diverts blood away from the central circulation of the skin and increases loss of fluids through urine. Caffeine can make some people more nervous and lightheaded, but for some in can help improve constriction of blood vessels.
Physical therapy can make a significant difference for many with POTS. Exercise can make symptoms worse though, so this should be done slowly and discerningly. As your blood circulation improves with medications and diet, the exercise intensity may be gradually increased. The goal is to retrain the autonomic nervous system to allow for more exercise, which then helps increase the blood volume.
Begin with #Yin #yoga for example, move to restorative yoga maybe all on the mat, and skip both hot yoga and vinyasa until symptoms are well controlled. Aquatic therapy may also work for some individuals with POTS as the pressure of the water around the body can be reassuring but do this with a partner, in the event of lightheadedness or syncope.
Reclined aerobic exercise, such as swimming, rowing, and recumbent bicycling has shown great results with POTS. Strengthen your core and leg muscles through isometric exercises to build muscle mass. Try a walking program and go further each time, maybe starting with 100 to 300 steps. Manual physical therapy, or a stretch clinic, may also be helpful in addressing nerve tightness and improving range of motion as a bridge for building better tolerance to exercise. Movement, however, you make it work though, truly is key to healing.
While no single medication is effective for everyone with POTS, most people with frequent symptoms affecting their quality of life need some form of medication. This may take some trial and error even with experienced clinicians, so remain patient but medications will target improving blood volume, helping the kidneys retain sodium (Fludrocortisone), reducing heart rate or blocking the effect of adrenal hormones on the heart (beta blockers), and improving blood vessel constriction (midodrine).
Additional Tips & Tricks
Wearing compression garments may help some people reduce excessive blood pooling in the legs. Certain postures while sitting or sleeping may also help reduce POTS symptoms. Some people have developed habits such as standing with their legs crossed or sitting in a low chair to compensate for POTS. That's why a tilt table test is necessary to measure the body's true response to standing without adaptive habits.
Raising the head of your bed six to ten inches can help alleviate POTS symptoms at night. The entire bed must be at an angle, and make sure the temperature in your bedroom is ideal. Try to maintain a good sleep schedule. Avoid excessive daytime napping, and excessive television viewing or phone/computer screen time.
Meditation and talk therapy may truly help calm your nervous system, even grounding and chakra work. Emotions can have a significant influence on your daily life and health. Identifying them can be useful if your talking with a therapist or POTS support group.
Overall Goal of Therapy
POTS symptoms may spontaneously lessen or disappear for a long time. They may come back just as unexpectedly. The absence of symptoms doesn't necessarily mean that the cause of POTS is gone as well. This is why systems medicine, or a functional medicine clinician can be important. The underlying cause shouldn't be ignored.
When cases are more complex, a neurologist or cardiologist experienced with POTS may prove helpful. Rehabilitation experts can also help in developing an exercise plan that works for you. Our practice also addresses somatic healing and trauma in the body which is often the missing link in functional medicine. We have to do this work if we want any other therapy to be truly effective.