What organs affect POTS?
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POTS (Postural orthostatic tachycardia syndrome) is a form of dysautonomia that affects the flow of blood through the body, thereby causing dizziness when standing.
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POTS Cheat Sheet
POTS, a common form of dysautonomia, is an invisible illness that largely affects women between the ages of 15 and 50 and is estimated to affect 1% of teenagers and a total of 1-3 million people in the United States. POTS can be triggered by pregnancy, major surgery, trauma, or a viral infection like mononucleosis or Lyme disease. Finally, 25% of POTS patients are so debilitated by illness that they cannot work or attend school.
POTS Symptoms: Because the autonomic nervous system is disrupted, a wide variety of symptoms may be present that span multiple organ systems.
- Orthostatic intolerance
- Dizziness
- Lightheadedness
- Headaches/Migraines
- Cognitive impairments
- Sleep abnormalities
- Neuropathic pain
- Fatigue
- Blood pooling in the extremities
- Light sensitivity in the eyes
- Abdominal pain
- Gastroparesis
- Rapid gastric emptying
- Hypersensitivity of the skin
Common Comorbidities: The most common comorbidities include chronic fatigue syndrome/myalgic encephalomyelitis, Ehlers-Danlos syndrome, and fibromyalgia. Others include:
- Addison’s disease
- Cervical stenosis
- Chiari malformation
- Ehlers-Danlos syndrome
- Epstein Barr syndrome
- Lyme disease
- Mast cell activation syndrome
- Median arcuate ligament syndrome
- Myalgic encephalomyelitis
- Norepinephrine transporter deficiencies
- Sjogren’s syndrome
- Syringomyelia
Diagnosing POTS
When a practitioner has a young patient (ages 15-50) with widespread, non-specific symptoms, POTS should be considered. 80% of POTS patients have been misdiagnosed and are told that their symptoms are “all in their head” before they are correctly diagnosed. As a result, patients may be frustrated by the time they reach your office. Thanks for taking the time to learn about POTS.
| Recommendations — Investigation of POTS from Sheldon et al. 2015. Heart Rhythm 12(6): e44 | Class | Level |
|---|---|---|
| A complete history and physical exam with orthostatic vital signs and 12-lead EKG should be performed on patients being assessed for POTS | I | E |
| Complete blood count and thyroid function studies can be useful for selected patients being assessed for POTS | IIa | E |
| A 24-hour Holter monitor may be considered for selected patients being assessed for POTS, although its clinical efficacy is uncertain | IIb | E |
| Detailed autonomic testing, transthoracic echocardiogram, tilt-table testing, and exercise stress testing may be considered for selected patients | IIb | E |
The best way to diagnose POTS currently is with a Standing Test. Take pulse and blood pressure in supine position after 5 minutes. Have patient stand without leaning for 2-10 minutes and repeat pulse and blood pressure every 2 minutes.
- Adults: heart rate ≥ 30 bpm upon standing may indicate POTS
- Children: heart rate ≥ 40 bpm upon standing may indicate POTS
- Blood pressure should not decrease by more than 20/10 mmHg upon standing.
You may also choose to refer your patient to an autonomic specialist to have a tilt table test and quantitative sudomotor autonomic reflex testing (QSART).
Treating POTS Symptoms
| Recommendations — Treatment for POTS taken from Sheldon et al. 2015. Heart Rhythm 12(6): e44 | Class | Level |
|---|---|---|
| A regular, structured, and progressive exercise program for patients with POTS can be effective | IIa | B-R |
| It is reasonable to treat patients with POTS who have short-term clinical decompensations with an acute intravenous infusion of up to 2 L of saline | IIa | C |
| Patients with POTS might be best managed with a multidisciplinary approach | IIb | E |
| The consumption of up to 2-3 L of water and 10-12g of NaCl daily by patients with POTS may be considered | IIb | E |
| It seems reasonable to treat patients with POTS with fludrocortisone or pyridostigmine | IIb | C |
| Treatment of patients with POTS with midodrine or low-dose propranolol may be considered | IIb | B-R |
| It seems reasonable to treat patients with POTS who have prominent hyperadrenergic features with clonidine or alpha-methyldopa | IIb | E |
| Drugs that block the norepinephrine reuptake transporter can worsen symptoms in patients with POTS and should not be administered | III | B-R |
| Regular intravenous infusions of saline in patients with POTS are not recommended in the absence of evidence, and chronic or repeated intravenous cannulation is potentially harmful | III | E |
| Radiofrequency sinus node modification, surgical correction of Chiari malformation type I, and balloon dilation or stenting of the jugular vein are not recommended for routine use in patients with POTS and are potentially harmful | III | B-NR |
For a modified POTS exercise program from the Children’s Hospital of Philadelphia that includes the basics of strength training and cardiovascular training.
Prognosis
The long-term prognosis varies based on the underlying cause and overall severity of symptoms. A study of 121 pediatric POTS patients over time found cumulative symptom-free rate gradually increased over time, especially if the illness was diagnosed early and proper treatment was initiated quickly ( Tao et al. 2019 ). However, POTS does not simply disappear, and most teens don’t outgrow this disorder. In fact, only 20% of teens made a full recovery within 10 years. Only 50% of people who develop POTS after a viral infection recover in five years, while those with primary hyperadrenergic form will require lifelong treatment ( Agarwal et al. 2007 ).
A study of 42 adult POTS patients found significant improvement in symptom burden and quality of life after 2 years of treatment, but the symptom burden was still high and did not improve occupational status ( Dipaola et al. 2020 ).
In a mailed follow-up study of POTS patients, with only a 34% response rate (may be skewed toward positive outcomes), the prognosis for pediatric POTS cases was found to be:
- 33% of pediatric patients had complete resolution of symptoms after 5 years
- 51% reported persistent but improved symptoms
- 16% reported intermittent symptoms
- 71% considered their health to be at least “good.” ( Bhatia et al. 2016 )
For individuals with POTS secondary to another illness, treatment of the underlying disorder (Addison’s disease, Crohn’s disease, mast cell activation syndrome, etc.) is critical in order to control POTS symptoms. Compassionate continuing care is critical to achieve a decent quality of life for these chronically ill patients.
Postural Orthostatic Tachycardia Syndrome (POTS)
The heart muscle is responsible for circulating blood throughout the body. When the heart does not operate as it is supposed to, blood may not pump normally throughout the body. Postural orthostatic tachycardia syndrome (POTS) is one of a group of conditions characterized by an orthostatic intolerance (OI). OI occurs when a patient has symptoms of low blood volume when they are standing, which are relieved when they lie down.
POTS is distinguished from other OI syndromes by a rapid increase in the heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute within 10 minutes of standing.
There are two main forms of POTS:
- Partial dysautonomic — Patients appear to have mild damage to nerves that affect involuntary bodily function (peripheral autonomic neuropathy), such as the heartbeat. This damage affects the peripheral blood vessels and their ability to maintain normal blood pressure when there is more stress from gravity, such as when the patient stands up. This can cause the blood to pool in the lower areas of the body
- Hyperadrenergic — a less common type of POTS that appears more gradually and to have a genetic component
POTS can also be the result of another condition. When this occurs it is known as secondary POTS. The most common cause of secondary POTS is chronic diabetes mellitus.
Symptoms
The main distinguishing symptoms of POTS are:
- A rapid increase in the heartbeat of more than 30 beats per minute
- A heart rate that exceeds 120 beats per minute, within 10 minutes of standing.
Other symptoms of POTS are similar to those of other OI syndromes, which include experiencing the following upon standing:
Patients with hyperadrenergic POTS may experience the following symptoms while standing:
- A significant tremor
- Anxiety
- Cold, sweaty extremities
- A migraine
- Increased urination
POTS can affect patients of all genders and age groups. However, women between the ages of 15 and 50 are most commonly diagnosed. Some women experience an increase in POTS symptoms right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma or a viral illness.
Patients with peripheral nerve damage or a family history of POTS may be at an increased risk of developing the condition.
Patients with conditions or medical histories associated with secondary POTS may also be at an increased risk. These include:
- Chronic diabetes mellitus
- Amyloidosis
- Sarcoidosis
- Alcoholism
- Lupus
- Sjögren syndrome
- Chemotherapy
- Heavy metal poisoning
Diagnosis
Diagnosis of POTS will generally begin with the physician taking a medical history and performing a physical exam. During the physical exam, the physician may perform a tilt table study to evaluate the heart and blood pressure when the body changes positions. Based on the tilt table test and the patient’s symptoms, an accurate diagnosis can often be made.
In some instances, the physician may order additional tests to rule out other conditions. These diagnostic tests may examine the heart muscle, the blood flow through the heart, and any potential abnormal electrical impulses. An electrocardiogram (EKG) is a painless procedure that provides a picture of the electrical activity of the heart and how the heart is working.
Another diagnostic tool that could be used is an echocardiogram. This noninvasive procedure uses a machine called a transducer that transmits sound waves and bounces them off the heart and back into the transducer. These echoes are then translated into visual images.
Electrophysiology studies may also be used to look at the electrical system of the heart.
Treatment
Treatment of POTS will vary for each patient, depending on the type, severity and cause of the condition. In some cases, when POTS is caused by an underlying condition such as diabetes, treatment may focus on managing that underlying condition. Other treatment options include physical therapy, lifestyle changes and medication.
For many patients, physical therapy is the best treatment option. Working with a physical therapist and doing exercises at home as part of a gradual reconditioning program will allow the patient to retrain their body to function more efficiently. Gentle resistance training can work to strengthen the skeletal muscle pump, which helps the heart to circulate blood throughout the body. Compression stockings may also be helpful to some patients.
When physical therapy and lifestyle changes are unable to provide adequate symptom relief, medication may be needed. Medication is used to stabilize the patient so that they may begin a reconditioning program, rather than being used as a long-term treatment.
The knowledgeable and highly trained staff at the Cedars-Sinai Heart Institute will work with each patient to determine the best treatment option.
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