Treatments for Long COVID autonomic dysfunction: a scoping review | Clinical Autonomic Research
Clinical Autonomic Research - For Long COVID autonomic dysfunction, we have summarized published evidence on treatment effectiveness, clinical practice guidelines, and unpublished/ongoing studies....
What is POTS, the disease affecting Olympic swimmer Katie Ledecky?
After nearly a decade of keeping it under wraps, Olympic medalist Katie Ledecky has shared her POTS diagnosis with the world. Experts discussed details of the disorder.
"reclined aerobic exercise, such as swimming, and strengthening your core, can provide relief."
Seeking care from a cardiologist and a physical therapist is essential,
"Things like proper hydration, extra electrolytes, and being able to keep cool can also help manage symptoms,"
The disease can often cause a flu-like feeling after exercise, something called post-exertional malaise/post-exertional symptom exacerbation (PEM/PESE).
"This can pose an issue in the sense of rigorous exercise for an Olympic athlete — or in other cases, exertion may be as simple as getting out of bed and walking to the kitchen."
Comparison of Electrolyte Supplements for Dysautonomia
Intended Audience: Patients seen in the Tulane Hypermobility and Ehlers-Danlos Clinic, who have been diagnosed with Dysautonomia or Postural Orthostatic Tachycardia Syndrome (POTS), and patients who have been instructed by their provider to consume oral electrolyte supplementation.
Article by Catherine Kingry, MD
Many patients seen in the Tulane Hypermobility and Ehlers-Danlos Clinic experience some degree
What is POTS? This strange disorder has doubled since the pandemic
Millions of people now live with the debilitating disorder, which can be triggered by viral illnesses like COVID-19. And many say the recommended treatment—exercise—has backfired.
For patients with PEM, pushing past their physical limits—often encouraged in POTS recovery exercise protocols—can lead to major crashes. As a result, many patients with POTS and ME/CFS report being given inappropriate guidance on exercise, the consequences of which can be severe.
Although exercise is considered to be a first-line treatment for POTS, in a survey of long COVID patients 89.5 percent of patients reported relapses after exertion, while other patients report difficulties with following some of the exercise protocols. As a result, the National Institute of Health and Care Excellence cautions against using graded exercise therapy for treating post-COVID fatigue.
As a recent study has shown, although the majority of POTS patients use non-pharmaceutical treatments, such as exercise, to manage their symptoms, they are not as effective as pharmaceutical treatments. Still, many patients report being expected to prove that exercise alone is not enough to treat their symptoms, before their doctors will consider putting them on medication.
“A lot of doctors think that salt, fluid, and exercise is the only treatment patients need,” says Lauren Stiles, the founder of Dysautonomia International and a research professor in neurology at SUNY Stony Brook, who developed POTS in 2010. “That is very outdated thinking.”
However, just as with any medication, there are nuances to the benefits of exercise, whether it’s figuring out the right amount and intensity, or screening for conditions that are often associated with POTS, for which exercise may be contraindicated. For other conditions, such as ME/CFS, exercise can lead to debilitating crashes.
There has been a recent slew of diagnoses in teens and adults who were otherwise healthy.
extreme fatigue, dizziness, headache, inability to exercise and some are unable to work
In addition, some POTS patients also have a "condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterized by post-exertional malaise (PEM) — a situation in which symptoms worsen after exercise,"
Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia that impacted an estimated 3 million Americans before COVID-19. Recent research shows that the number of POTS patients is now estimated to impact at least 6 million Americans since the pandemic began. POTS impacts millions of people around the world too, but we don?t have good epidemiology data in other countries. POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing.1
Diagnostic Criteria
The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.1,2,3,4 In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted.4,5 POTS is often diagnosed by a Tilt Table Test, but if such testing is not available, POTS can be diagnosed with bedside measurements of heart rate and blood pressure taken in the supine (laying down) and standing up position at 2, 5 and 10 minute intervals. Doctors may perform more detailed tests to evaluate the autonomic nervous system in POTS patients, such as Quantitative Sudomotor Axon Reflex Test (QSART, sometimes called Q-Sweat), Thermoregulatory Sweat Test (TST), skin biopsies looking at the small fiber nerves, gastric motility studies and more.
Signs and Symptoms
While the diagnostic criteria focus on the abnormal heart rate increase upon standing, POTS usually presents with symptoms much more complex than a simple increase in heart rate. It is fairly common for POTS patients to have a drop in blood pressure upon standing, but some POTS patients have no change or even an increase in blood pressure upon standing.1 POTS patients often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation.3 Approximately 50% of POTS patients have a small fiber neuropathy that impacts their sudomotor nerves. Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath.1,3,4 Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position.
Quality-of-Life and Disability
Some patients have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life activities, such as bathing, housework, eating, sitting upright, walking or standing can be significantly limited.1,3 Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure.1 Approximately 25% of POTS patients are disabled and unable to work.1 Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure.21, 22
History of POTS
The term POTS was coined in 1993 by a team of researchers from Mayo Clinic, led by neurologist Dr. Philip Low.8 However, POTS is not a new illness; it has been known by other names throughout history, such as DaCosta's Syndrome, Soldier's Heart, Mitral Valve Prolapse Syndrome, Neurocirculatory Asthenia, Chronic Orthostatic Intolerance, Orthostatic Tachycardia and Postural Tachycardia Syndrome.3 In the past, it was mistakenly believed to be caused by anxiety. However, modern researchers have determined that POTS is not caused by anxiety.2,6,7 It is caused by a malfunction of the patient's autonomic nervous system. Thankfully, in the last 20 years, researchers have gained much more insight into imbalances of the autonomic nervous system.1
POTS Classifications
POTS researchers have classified POTS in various ways. Dr. Blair Grubb has described POTS as primary or secondary. Primary refers to POTS with no other identifiable medical condition (also known as idiopathic POTS). Secondary refers to POTS with the presence of another medical condition known to cause or contribute towards POTS symptoms.1 Dr. Julian Stewart has described high flow and low flow POTS, based upon the flow of blood in the patients lower limbs.9
Other researchers have described POTS based on some of its more prominent characteristics: hypovolemic POTS, which is associated with low blood volume; partial dysautonomic or neuropathic POTS which is associated with a partial autonomic neuropathy; and hyperandrenergic POTS which is associated with elevated levels of norepinephrine.1,3,4 These are not distinct medical conditions and many POTS patients have two or three of the different characteristics present. For example, one patient can have neuropathy, low blood volume and elevated norepineprhine.
Who Develops POTS?
POTS can strike any age, gender or race, but it is most often seen in women of child bearing age (between the ages of 15 and 50).2 Men and boys can develop it as well, but approximately 80% of patients are female.2
Is POTS Caused by Anxiety?
While some of the physical symptoms of POTS overlap with the symptoms of anxiety, such as tachycardia and palpitations, POTS is not caused by anxiety. POTS patients are often misdiagnosed as having anxiety or panic disorder, but their symptoms are real and can severely limit a person's ability to function.1,3 Research has shown that POTS patients are similarly or even less likely to suffer from anxiety or panic disorder than the general public.3,5,6,7 Research surveys that evaluate mental health show similar results between POTS patients and national norms.20
What Causes POTS?
POTS is a heterogeneous (meaning it has many causes) group of disorders with similar clinical manifestations.1,4 POTS itself is not a disease; it is simply a cluster of symptoms that are frequently seen together. This is why the 'S' in POTS stands for Syndrome. Since POTS is not a disease, it is fair to say that POTS is caused by something else. However, figuring out what is causing the symptoms of POTS in each patient can be very difficult, and in many cases, patients and their doctors will not be able to determine the precise underlying cause. When doctors cannot pinpoint the underlying cause of a patient's POTS, it may be called Primary or Idiopathic POTS.1 Idiopathic simply means of an unknown origin.
While researchers are still working to identify the root causes and pathology of POTS, there are several underlying diseases and conditions that are known to cause or be associated with POTS or POTS like symptoms in some patients. This is a partial list:
-Amyloidosis;1
-Autoimmune Diseases such as Autoimmune Autonomic Ganglionopathy, Sjogren's Syndrome, Lupus, Sarcoidosis, Antiphospholipid Syndrome;1,3, 22
-Chiari Malformation19
-Deconditioning;4
-Delta Storage Pool Deficiency13
-Diabetes and pre-diabetes
-Ehlers Danlos Syndrome - a collagen protein disorder than can lead to joint hypermobility and stretchy veins;3,12
-Genetic Disorders/Abnormalities;3
-Infections such as Mononucleosis, Epstein Barr Virus, Lyme Disease, extra-pulmonary Mycoplasma pneumonia and Hepatitis C;1,2,3,4,10,11
-Multiple Sclerosis;14
-Mitochondrial Diseases;15
-Mast Cell Activation Disorders;3
-Paraneoplastic Syndrome - rare small tumors of the lung, ovary, breast and pancreas that produce antibodies;1
-Toxicity from alcoholism, chemotherapy and heavy metal poisoning.1
-Traumas, pregnancy or surgery;1,2,3
-Vaccinations;18
-Vitamin Deficiencies/Anemia;16,17
Treatment
Each patient is different, thus consulting with a physician who has experience in treating autonomic disorders is important. The most common treatments for POTS include increasing fluid intake to 2-3 liters per day; increasing salt consumption to 3,000 mg to 10,000 mg per day; wearing compression stockings; raising the head of the bed (to conserve blood volume); reclined exercises such as rowing, recumbent bicycling and swimming; a healthy diet; avoiding substances and situations that worsen orthostatic symptoms; and finally, the addition of medications meant to improve symptoms.1,3 Many different medications are used to treat POTS, such as Fludrocortisone, Beta Blockers, Midodrine, Clonidine, Pyridostigmine, Benzodiazepines, SSRIs, SNRIs, Erythropoietin and Octreotide.1,3 If an underlying cause of the POTS symptoms can be identified, treating the underlying cause is very important as well.
Prognosis
Currently, there is no cure for POTS, however researchers believe that some patients will see an improvement in symptoms over time. Detailed long term follow up studies on the course of POTS are sparse, but Dysautonomia International is working with researchers to begin to collect long term follow up data. With proper lifestyle adjustments, exercise, diet and medical treatments, many patients see an improvement in their quality of life.1 If an underlying cause can be identified, and if that cause is treatable, the POTS symptoms may subside. While the prognosis is good for most patients, researchers have noted that some patients will not improve and may actually worsen over time.1
The longest follow-up study done to date comes from Mayo Clinic.20 Mayo Clinic did a survey of their pediatric POTS patients seen between 2003 and 2010. Of those who responded to the survey, 18.2% reported a complete resolution of their POTS symptoms, while 52.8% reported persistent but improved symptoms. Male patients were twice as likely to report recovery. The average survey respondent had been diagnosed for about 5 years. Both patients who fully recovered and those who did not had mental health scores similar to the national norm.
Print out t
However, modern researchers have determined that POTS is not caused by anxiety.2,6,7 It is caused by a malfunction of the patient's autonomic nervous system. Thankfully, in the last 20 years, researchers have gained much more insight into imbalances of the autonomic nervous system.1
Post-COVID Postural Orthostatic Tachycardia Syndrome and Inappropriate Sinus Tachycardia in the Pediatric Population
Current Clinical Microbiology Reports - Long COVID, or post-COVID Condition, is increasingly recognized in children and adolescents, despite being less studied compared with the adult population....
Autonomic dysfunction in ‘long COVID’: rationale, physiology and management strategies
The SARS-CoV-2 (COVID-19) pandemic has caused unprecedented morbidity, mortality and global disruption. Following the initial surge of infections, focus shifted to managing the longer-term sequelae of illness in survivors. ‘Post-acute COVID’ ...
Fluid and salt repletion
Ensuring fluid repletion (2–3 litres water per day and avoiding caffeine and alcohol) and ensuring one to two teaspoons of salt supplementation per day helps maintain plasma volume and avoid hypovolaemia.
Post-Acute Sequelae of COVID-19 and Cardiovascular Autonomic Dysfunction: What Do We Know?
Post-acute sequelae of SARS-CoV-2 (PASC), or long COVID syndrome, is emerging as a major health issue in patients with previous SARS-CoV-2 infection. Symptoms commonly experienced by patients include fatigue, palpitations, chest pain, dyspnea, reduced exercise tolerance, and “brain fog”. Additionally, symptoms of orthostatic intolerance and syncope suggest the involvement of the autonomic nervous system. Signs of cardiovascular autonomic dysfunction appear to be common in PASC and are similar to those observed in postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia. In this review, we report on the epidemiology of PASC, discuss current evidence and possible mechanisms underpinning the dysregulation of the autonomic nervous system, and suggest nonpharmacological and pharmacological interventions to treat and relieve symptoms of PASC-associated dysautonomia.
Hypovolemia has been widely recognized in PASC patients with dysautonomic features [25,52]. Hypovolemia may trigger hyperadrenergic POTS and lead to cerebral hypoperfusion and the impairment of central autonomic networks [56]. Preliminary evidence on post-COVID POTS supports the correction of hypovolemia by the liberal intake of water and salt
eLetters should relate to an article recently published in the journal and are not a forum for providing unpublished data. Comments are reviewed for appropriate use of tone and language. Comments are not peer-reviewed. Acceptable comments are posted to the journal website only. Comments are not published in an issue and are not indexed in PubMed. Comments should be no longer than 500 words and will only be posted online. References are limited to 10. Authors of the article cited in the comment will be invited to reply, as appropriate.
Her episodes of tachycardia were primarily associated with upright posture. In addition to rapid palpitations, she complained of lightheadedness and presyncope on standing, intermittent stabbing chest pains (typically on standing), mental clouding with an inability to concentrate, severe fatigue, and exercise intolerance. Orthostatic vital signs recorded a supine heart rate (HR) of 73 bpm with a blood pressure (BP) of 103/72 mm Hg. After standing for 1 minute, her HR increased to 106 bpm with a BP of 109/80 mm Hg, and after 5 minutes, her HR was 122 bpm with a BP of 118/75 mm Hg. She was diagnosed with postural tachycardia syndrome (POTS).
POTS is a disorder of the autonomic nervous system that can produce substantial disability among previously healthy people. Patients with POTS demonstrate an HR increase of ≥30 bpm within 10 minutes of standing (or higher in children), are often hyperadrenergic, and tend to have a low blood volume. Therapies targeting the hypovolemia and the excess sympathetic nervous system activation may help relieve symptoms.
Exercise has routinely been recommended as part of the treatment regimen for many years. Unfortunately, POTS patients report feeling debilitated for days after exertion, limiting compliance. Anecdotally, patients who exercise seem to have a better long-term prognosis, but it is not certain if this is a result of the exercise or of their ability to exercise.
What is POTS? And how is it related to long COVID?
Everyday tasks, such as washing your hair, become impossible.
Now, more research is showing how long COVID resembles POTS. Many people with long COVID show similar symptoms.
Increasing fluid and salt intake (under the supervision of your GP), and using full-length compression tights is recommended. These help control heart rate and blood pressure, and reduce dizziness.
Avoiding triggers is important. These include avoiding standing still for extended periods, hot showers, large meals high in carbohydrates, and hot environments.
Diagnosis and management of postural orthostatic tachycardia syndrome: A brief review
Postural orthostatic tachycardia syndrome (POTS) has been recognized since at least 1940. A review of the literature identifies differences in the definition for this condition and wide variations in treatment and outcomes. This syndrome appears to describe ...
The levels of renin and aldosterone in some POTS sufferers are found to be low. These hormones increase plasma volume by promoting sodium retention.[25] Thus, increasing sodium intake by taking salt tablets or an electrolyte solution helps expand blood volume, which will alleviate the hypotension some POTS patients suffer.
Conversely, a randomized, crossover, controlled study showed low-dose oral propranolol significantly benefited POTS patients by attenuating tachycardia and improving their symptoms.
5.6. Ivabradine
Due to the presence of sinus tachycardia in some POTS patients, usage of a sinus node blocker, in particular, Ivabradine, was reported to improve their symptoms. Ivabradine may be preferable to beta-blockers as it reduces the heart rate without sexual disturbance, negative ionotropic effects and vasodilation, which are commonly associated with beta-blocker.[37]
5.10. NSAIDs
POTS patients who suffer postprandial hypotension might benefit from ibuprofen or indomethacin[50] since these medications reduce prostaglandin effects, hence blocking its effect in decreasing blood pressure.[51
Electrolytes for POTS and Dysautonomia: A Comprehensive Guide - EDS Nutrition
The guide on electrolytes and POTS: why they help people with POTS, how much people need, and which electrolyte supplements are best
First, it’s easy to make the mistake of assuming that a certain amount of salt is equal to a certain amount of sodium! Salt is 50% sodium because it’s made up of 50% sodium and 50% chloride ions. So, 1 teaspoon of salt is technically half a teaspoon of sodium
here are about 2,325 milligrams of sodium per teaspoon of salt.
recommends that people with POTS have about 3,000-10,000 milligrams of sodium per day
Dysautonomia International: Lifestyle Adaptations for POTS
There are a number of non-pharmacological treatments and lifestyle adaptations that may help POTS patients reduce and cope with their symptoms. The following are a list of the most commonly recommended measures. It is important to remember that treatment, pharmacological or non-pharmacological, should be individualized as POTS patients may react differently to treatments depending on POTS subtype and individual responses.1 Speak with your doctor before making any changes to your treatment plan.
Increase Fluid and Salt Intake
It is often recommended to increase both fluid and salt intake in order to increase blood volume, which is typically low in POTS patients. This has proven to be particularly helpful in patients with blood pooling, hypovolemia, or hypotension.2 Except for the hyperadrenergic subtype of POTS, a fluid intake of approximately two liters and an intake of three to five grams of salt is typically recommended per day.3 Note that salt includes sodium and chloride. One gram of table salt contains approximately .393 grams (393 milligrams) of sodium. That means that five grams of salt contains approximately 1.965 grams (1965 milligrams) of sodium. This number can be useful when tracking salt in food with nutrition labels, which often list sodium content.
Smaller Meals
After eating a large meal, much of our blood is redirected to aid in the digestion process, which, for POTS patients, can increase symptoms. Therefore, it is recommended to eat several smaller meals throughout the day in lieu of two or three large ones.2
Lower Carbs/Lean Protein
Patient who notice a worsening of symptoms after eating may want to try consuming fewer simple carbohydrates (like refined sugars and flours) and consuming healthy protein with each meal (such as skinned chicken breasts, salmon, skim milk or low fat yogurt).
Examine Your Reaction To Gluten
Patients who have gastrontestinal symptoms may want to speak to their doctor about getting tested for Celiac Disease. Some of the blood tests for Celiac Disease require the person to have been eating gluten for several weeks prior to the test, so don't switch to a gluten free diet until you have spoken with your doctor about a possible Celiac blood test. Even if you don't have Celiac Disease, there appears to be a second group of people who have non-Celiac gluten sensitivity. There is no definitive test for this, so the best way to determine if non-Celiac gluten sensitivity is causing or contributing to your gastointenstinal symptoms is to eat a gluten free diet on a trial basis. Some individuals notice a benefit within a short period of time, while other people take about two or three months to notice a benefit. Of course, some people do not notice a benefit or change in symptoms at all when avoiding gluten.
Examine Your Reaction To Dairy
Similar to gluten, some individuals have a lactose intolerance, while others can have a true allergy to milk protein. Some POTS patients report feeling less symptomatic consuming fewer or no dairy products. Note, if you do have a lactose intolerance, you can still consume some dairy products that contain little or no lactose depending on your sensitivity. There are also supplements available now that contain the lactase enzyme needed to digest lactose containing dairy products (such as Lactaid). If you eliminate dairy from your diet, be sure to include another healthy source of calcium in your diet.
Examine Your Reaction to Caffeine
Caffeine is helpful to some POTS patients and exacerbates symptoms in others. It is therefore useful to figure out if it helps you or if you should avoid it.4
Avoid Alcohol
Alcohol can worsen symptoms for POTS patients. Alcohol is dehydrating and can lead to increased hypotension through dilation of the veins and thus should be avoided by most POTS patients.5 6
Elevate Head During Sleep
It is recommended to slightly elevate the patient's head during sleep. This is done in order to help (re)condition the patient's body to orthostatic stress,6 and this can also help patients that may be experiencing gastric motility problems that result in acid reflux or G.E.R.D. The best way to do this is to raise the head of the bed with a few bricks or large books. A wedge pillow is not very helpful for this. Elevating the whole body and having the feet be lower than the hip area is needed to get the intended benefit. A wedge pillow only elevates the shoulders and head, but does nothing to change the position of the hips or the lower legs.
Try Compression Garments
Compression support hose and abdominal binders can be helpful for some POTS patients by lessening the peripheral venous pooling and hypotension.6 The most effective compression hose are 30 mm Hg of ankle counter pressure and go waist high.3 There are many different varieties such as closed toe and open toe, knee high and waist high. All varieties are available for each gender and may be subsidized through some insurance plans as a durable medical good with a doctor's script. There are new variety of colors and patterns available for the fashion conscious patient. Some brands are more comfortable and breathable than others, so don't give up on compression stockings simply because the first pair you try are not comfortable. Getting a professional fitting at a medical supply store may help, and you may even be allowed to try on a few pairs before purchasing them.
Exercise
Exercise should be considered an essential part of treatment for almost all POTS patients. Reclined aerobic exercise, such as swimming, rowing and recumbent bicycling, as well as strengthening of the abdomen and legs, have been found to be most beneficial.3 See Exercises for Dysautonomia Patients for more information.
Counter-Maneuvers
Counter-maneuvers such as tensing the leg muscles or crossing your legs while standing have been shown to reduce symptoms of postural stress, cerebral perfusion, and oxygenation.7 This rarely stops POTS from acting, but may reduce symptoms and/or slow the effects of standing down. If you are feeling faint or very dizzy, sit or lay down to prevent injury from a fall.
Scheduling
POTS may require you to reduce your activity load, get more sleep, and change your schedule. It is helpful to plan activities for the time of day that is best for you; for many POTS patients, the morning is particularly difficult.5 It is also helpful to keep your schedule flexible as symptoms can flare-up without much notice or forewarning.
Morning Routine
As previously stated mornings can be especially symptomatic times for many POTS patients. There are a few things you can do to help mitigate these symptoms. It is helpful to drink a large glass of water or other hydrating fluid before you get up in the morning.6 It is also recommended to break down the standing up process into stages: supine to seated to standing.1
Avoid Prolonged Standing
It is important to avoid prolonged standing as standing precipitates a worsening of POTS symptoms in most patients. If you must stand for a long time, try flexing and squeezing your feet, leg and gluteus maxiumus muscles, or shifting your weight from one foot to the other. The more you can move your lower half while standing, the better your blood will pump back to your heart.
Showering
Use of a shower chair can be very helpful for some patients, as it eliminates the need to stand, making showering less likely to trigger an exacerbation of POTS symptoms. It is also helpful to use lukewarm water as either hot or cold can trigger POTS symptoms. Some patients also find it better to shower just before bed, since showering can leave some POTS patinets very tired. Another technique is to avoid putting your hands above your head to wash your hair, by bending forwards and flipping your head upside down in the shower, as if you were washing your hair in the sink. This can help ward off orthostatic symptoms while allowing you to wash your hair.
Disability Parking Placard
Depending on the severity of your symptoms, you may be eligible for a disability parking placard, which for some can mean the difference between being able to partake in more daily activities and not by shortening the walk. The requirements and forms vary by state and can be located on your state's DMV website.
Mobility Scooter or Wheelchair
POTS may make some patients bed or wheelchair-bound.8 While it is important to try to exercise as much as your physical condition allows you to, the inability to stand or walk very far does not have to preclude you from all daily activities. In such cases, a wheelchair or mobility scooter can be very helpful for POTS patients to engage in daily life activities even while very sick or while having a flare-up.
Maintaining an Even Temperature
It is important for POTS patients to maintain an even temperature as extremes, particularly heat, can exacerbate symptoms.8 Air conditioning, body cooling vests, sun shirts, handheld misters/personal fans, hats, layers in case of temperature fluctuation, and quick drying clothing and sheets can all be helpful in maintaining an even temperature. Some patients use an old fashioned bag of frozen peas as an ice pack during extreme heat. The peas mold to the body, and can be used and re-frozen over and over again (but don't accidentally eat them after they have been thawed and refrozen!).
Find Your Triggers
POTS symptoms can be exacerbated by a variety of situations and activities. It's helpful to find out what exacerbates your symptoms so you can avoid or mitigate a flare-up and plan ahead.
Have A Go Bag
Since POTS patients may use many tools to help manage their symtoms, it can be challenging getting packed to leave the house. Sometimes just gathering all of your things together can be exhausting in itself, leaving you less energy to enjoy whatever activity you were going to attend. It may be helpful to have a large purse or knapsack containing all of the items you are likely to ne
This has proven to be particularly helpful in patients with blood pooling, hypovolemia, or hypotension
Examine Your Reaction to Caffeine
Caffeine is helpful to some POTS patients and exacerbates symptoms in others. It is therefore useful to figure out if it helps you or if you should avoid it.4
There are a few things you can do to help mitigate these symptoms. It is helpful to drink a large glass of water or other hydrating fluid before you get up in the morning.6 It is also recommended to break down the standing up process into stages: supine to seated to standing.1
Mobility Scooter or Wheelchair
POTS may make some patients bed or wheelchair-bound.8 While it is important to try to exercise as much as your physical condition allows you to, the inability to stand or walk very far does not have to preclude you from all daily activities. In such cases, a wheelchair or mobility scooter can be very helpful for POTS patients to engage in daily life activities even while very sick or while having a flare-up.
Some patients use an old fashioned bag of frozen peas as an ice pack during extreme heat. The peas mold to the body, and can be used and re-frozen over and over again (but don't accidentally eat them after they have been thawed and refrozen!).
water bottle, your salty snack, your medications and your hand held fan
Since many EMTs and ER doctors do not know what POTS is, you may want to list it as "POTS/autonomic dysfunction.
Salt and dysautonomia go hand and hand for many autonomic disorder patients. Learn more about this nonpharmacological treatment.
In POTS patients, low blood pressure and tachycardia are common. Doctors have recommended increasing sodium intake to address concerns such as hypovolemia (low blood volume) and elevated plasma norepinephrine that contribute to tachycardia. In 2021, the Journal of American College of Cardiology published a study on the effect of high dietary sodium intake in patients with POTS. It suggests that increasing sodium intake can reduce POTS symptoms including increased heart rate when standing and increasing norepinephrine (pre-adrenaline) levels.
* Hypovolemia: A condition in which the volume of blood plasma is low. This causes rapid heartbeat, weak pulse, confusion, and sometimes loss of consciousness.
(approximately two teaspoons)
it’s recommended that patients also consume 2-4 liters of fluid daily (up to half should be electrolyte rich. Ex. Gatorade, juice, lemonade, and electrolyte supplements).
Water Ingestion in Postural Orthostatic Tachycardia Syndrome: A Feasible Treatment Option?
Blue: Is this also true for patient with PEM?
Hypovolemia or excessive lower-extremity and splanchnic venous pooling results in inadequate venous return, which may possibly explain some of the manifestations of POTS
In some POTS patients with concomitant conditions causing MAST cell activation, allergic rhinitis/sinusitis and rash may also be present.
Low intravascular volume can be clinically diagnosed by the presence of dry mucosa; a narrow upright pulse pressure; and concentrated urine despite adequate water ingestion, which may be suggestive of insensible fluid and electrolyte loss. As such, avoiding overheating,
nonselective β-blocker (propranolol23) or ivabradine24
In the present case, Ziffra et al. report a fairly novel strategy of acute water (eight ounces) ingestion for heart rate reduction and symptom amelioration in POTS patients. This appears to be an effective, simple, easy, and safe strategy to implement.
POTS is defined as an increase in the heart rate of ≥ 30 bpm, within 10 minutes of standing, in the absence of orthostatic hypotension
POTS is sometimes associated with chronic fatigue syndrome
n the clinical setting, tachycardia was reproduced with an upright posture, confirming the diagnosis of POTS. Acute water ingestion performed in the clinic setting demonstrated reproducible suppression of her upright tachycardia based on real-time loop-recorder interrogation.
Interestingly, in this same study, the use of a clear soup had a worse outcome on orthostatic tolerance in both multiple system atrophy and POTS patients.
Exercise in a recumbent or semirecumbent position for 20 minutes to 30 minutes three times a week has been proven to be effective in improving orthostatic tolerance.
The current guidelines consider recommending a daily ingestion of 10 g to 12 g of sodium and 2 L to 3 L of water.1
In the present case, there was immediate positive feedback that suggested acute water ingestion improved the patient’s upright heart rate and, presumably, her symptoms. However, a question remains—was this enough positive feedback to encourage repeated water ingestion before standing and continued long-term improvement?
In patients without syncope, smartwatches, rather than implanted monitors, would allow patients to see the real-time the effects of a simple intervention, thereby providing enough positive feedback to encourage long-term compliance with nonpharmacologic recommendations. Using smartwatches in the management of POTS is a potential application of this technology not previously entertained. Whether this will be adapted for future research or not, however, remains to be seen.
