Journal

POTS: An Overview

June 30, 2022

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Postural orthostatic tachycardia syndrome (POTS) is a chronic multi-system disorder in which heart rate rapidly increases when a person stands up.

This condition affects about 500,000 to 1,000,000 people in the United States. Although not life-threatening, POTS can be disabling and impact a person’s functioning.

At this point in time, POTS doesn’t have a cure. But with an accurate diagnosis and appropriate treatment plan, symptoms become more manageable. 

Here’s what you need to know about POTS:

What is POTS?

Postural orthostatic tachycardia syndrome (POTS) is a disorder of the autonomic nervous system, the part of the nervous system that regulates processes like heart rate, blood pressure, and breathing. In this disorder, when a person stands up, their heart rate rapidly increases, often leaving that person feeling weak and lightheaded.

Typically, when someone goes from laying down to standing up, blood moves away from the chest to the lower parts of the body. In those who don’t have POTS, the autonomic nervous system ensures that the body adjusts to this shift by signaling the blood vessels to tighten so that blood can continue flowing to the heart and brain. Heart rate may still increase, but only by around 10 to 30 beats before returning to normal.

However, this autonomic nervous system response is impaired in those with POTS. Because of this, when standing up, blood pulls down to the lower parts of the body without circulating properly to the heart and brain. As a result, that person may experience brain fog, dizziness, or weakness when upright and will only feel better when they lie back down.

For a person to be diagnosed with POTS, all of these criteria must be present:

  • Heart rate increase of ≥ 30 beats/minute for people older than 20 and ≥ 40 beats/minute for those below 20 within 10 minutes of standing up
  • No significant drop in blood pressure from standing up (orthostatic hypotension; >20 mm Hg drop in systolic blood pressure)
  • Symptoms like lightheadedness, palpitations, weakness, blurred vision, tremors, exercise intolerance, and fatigue when upright
  • Symptoms must persist for at least three months
  • Absence of other conditions that cause increased heart rate

How Common is POTS?

POTS affects about 0.2% of the world’s population, occurring in an estimated 500,000 to 1,000,000 people in the US. 

Anyone can develop POTS, but 75 to 80 percent of POTS cases are among women between 15 to 50.

Types of POTS

It’s still unclear what the exact cause of POTS is, but researchers have proposed different causes grouped into subtypes of POTS. These subtypes are characterized by abnormal increases in heart rate (tachycardia). Note that it is also possible for an individual to have more than one type of POTS at a time.

Here are the types of POTS:

  1. Neuropathic POTS: This is the most common type of POTS. Here, the small fiber nerves that control the constriction of blood vessels in the legs and abdomen don’t function properly.
  2. Hyperadrenergic POTS: This subtype is present in 30 to 60 percent of POTS cases. People with this subtype show elevated norepinephrine levels, a stress hormone. as well as symptoms such as tremors, high blood pressure, palpitations, anxiety, and tachycardia.
  3. Hypovolemic POTS: People with Hypovolemic POTS show low blood levels. This subtype exists in about 70 percent of POTS cases.
  4. Autoimmune: Researchers suggest that autonomic dysfunction in this subtype may be linked to autoimmune disorders like lupus, rheumatoid arthritis, and Sjogren’s syndrome.
  5. Deconditioning: Those with POTS often experience deconditioning, bodily changes that result in loss of physical strength or energy after long periods of inactivity. It’s unclear to researchers whether deconditioning causes POTS or if POTS results from deconditioning. 

What are the Symptoms of POTS?

POTS symptoms vary from person-to-person and can be classified into two groups: cardiac and non-cardiac symptoms.

Cardiac symptoms include:

  • Palpitations
  • Chest pain
  • Lightheadedness
  • Chest pain
  • Shortness of breath
  • Fainting

Non-cardiac symptoms include:

  • Exercise intolerance
  • Fatigue
  • Weakness
  • Brain Fog
  • Headaches
  • Tremors
  • Excessive sweating
  • Poor concentration
  • Abdominal pain
  • Poor sleep
  • Nausea
  • Bladder complaints
  • Vomiting
  • Blurry or tunneled vision

Who is at Risk for POTS?

POTS is most common in women ages 15 to 50. People with POTS often develop symptoms after stressful events like a traumatic incident, major surgery, puberty, pregnancy, or a viral illness. 

About 50 percent of people with POTS report having a viral illness before developing POTS. And 80 percent of women with POTS say their symptoms worsen when menstruating. However, POTS may also develop abruptly without any preceding event or illness.

POTS may be genetic. About 25 percent of people report a family history of symptoms of this disorder. 

Specific disorders have been associated with or show symptoms similar to POTS, including:

  • Irritable bowel syndrome (IBS)
  • Autoimmune diseases
  • Ehlers-Danlos syndrome
  • Heart arrhythmias
  • Thyroid disease
  • Rheumatoid arthritis
  • Chronic fatigue
  • Insomnia
  • Fibromyalgia
  • Chronic headaches
  • Traumatic head injury
  • Anxiety
  • Depression 

Is POTS Life-Threatening?

The good news is that no, POTS is not life-threatening. And there are no reported deaths from POTS. However, it can significantly affect how much can be performed day-to-day, which can naturally cause frustration in those who suffer from it. People with POTS often show worse symptoms after regular activities like standing, walking, eating, having drinks, showering, heat exposure, etc., and only feel relief once lying down.

Is POTS a Disability?

Technically, yes. POTS can be disabling. Those with POTS may struggle with simple everyday activities. They often report less productivity or functioning at work, difficulty participating in school activities, and overall lower quality of life. In fact, about 30 to 50 percent of people with POTS faint which can be quite distressing. However, symptoms of this condition can be eased with proper management, as discussed below. 

How is POTS Diagnosed?

POTS shows symptoms similar to conditions like anxiety, overactive thyroid, weakness, pheochromocytoma (PCC), postural hypotension, and hormone disorders, so giving an accurate diagnosis can be challenging

If you’re showing symptoms of POTS, it's best to speak with a doctor for diagnosis in order to receive appropriate treatment. A diagnosis usually begins with a doctor looking into your medical history. They may ask these or similar questions to understand:

  • What triggers your symptoms?
  • When did you symptoms begin?
  • How severe are your symptoms?
  • What circumstances or factors worsen your symptoms?
  • Are there related symptoms that don’t show up when you stand up?
  • What are your typical physical activity levels?
  • What are your sleep habits?
  • Are you taking any medications?
  • Have you had any previous treatments?
  • What is your water and caffeine intake?

The doctor will also conduct a physical examination and other tests to confirm a POTS diagnosis. Here are some of the required tests for a POTS diagnosis:

  1. Head-up tilt test: A doctor will ask you to lay on a table and will fasten you for safety. They’ll then slowly raise the table so you’re upright and monitor your heart rate and blood pressure.
  2. Active standing test: The active standing test checks your blood pressure and heart rate as you switch from lying down to standing up. The doctor will check your heart rate and blood pressure after laying down for 10 minutes and again when you stand up and after 1, 3, 5, and 10 minutes. 
  3. Electrocardiography (ECG): A doctor may carry out an ECG to screen for the presence of heart problems or abnormalities that may be causing POTS-related symptoms. 
  4. Holter monitor: This is an electrocardiography device attached to the chest which monitors and records your heart’s activity for at least 24 hours. A doctor may use this tool to check how your heart rate responds as you go about daily activities. 
  5. Echocardiogram: This test is an ultrasound scan that looks at the heart and surrounding blood vessels.
  6. Exercise stress testing: This test is carried out in the doctor’s office and checks how your heart responds to increased workload from vigorous activity. You’ll be required to walk on a treadmill or ride a stationary bicycle, and your doctor will monitor your heart rate, blood pressure, and breathing.
  7. Urine and blood test: A doctor may conduct urine and blood tests to check your sodium and blood levels and rule out potential conditions like pheochromocytoma.
  8. Autonomic testing: This test checks how well your autonomic nervous system works. It consists of several different types of tests including a deep breathing test, Valsalva maneuver, quantitative sudomotor axon reflex test (QSART), and thermoregulatory sweat test (TST).

Can POTS Be Cured?

At this point in time, there is no known cure for POTS. However, research estimates that about 50 percent of POTS patients will recover in 1 to 3 years.  And, about 80 percent of people with POTS will show symptom improvement that allows them to once again engage in everyday activities. Note that some symptoms still might remain, and the amount of time it takes for these improvements to occur varies from person-to-person.

Who Treats POTS?

A doctor can diagnose and treat POTS. You might be referred to a neurologist, cardiologist,  electrophysiologist, or other POTS specialist in special cases.

How is POTS Treated?

No single treatment plan works for everyone. A doctor will recommend a treatment plan based on your diagnosis, POTS type, how severe your symptoms are, and what treatment you can follow. The treatment plan will focus on relieving your symptoms, educating you on how to live with POTS, helping you become most functional, and improving your quality of life.

Treatment effectiveness depends on getting an accurate diagnosis, becoming educated on POTS management, and adhering to treatment. POTS treatment may fall under lifestyle management or medication.

Lifestyle Management

A doctor may recommend the following lifestyle changes to manage your symptoms and help you feel better. Unless your symptoms are severe at the time of diagnosis, lifestyle recommendations will likely be offered before a doctor prescribes medications. These lifestyle recommendations might include:

  • Diet changes: Increasing your water intake to about 2 to 3 liters a day and salt intake to more than two tablespoons (200 mEq sodium) a day can raise your blood volume and reduce your heart rate, improving your POTS symptoms. 
  • Regular exercise: Exercise can promote your fitness, stamina, and energy levels and to manage the exercise intolerance that often comes with POTS. A doctor will create an exercise routine that might consist of cardio exercises and strength training.
  • Wearing waist-high compression garments: Evidence suggests that a waist-high compression garment can reduce your heart rate and improve POTS symptoms, helping your body adjust to standing up or engaging in other vigorous activities.
  • Managing stress levels: Stress can trigger or worsen POTS symptoms. You can improve your stress levels by participating in self-care activities like meditation, listening to calm music, reading a book, etc.
  • Sleep more: Sleep promotes recovery and can help you feel alive and energized. Prioritizing your sleep health by following healthy sleep habits can make all the difference in your sleep quality and quantity. Healthy sleep habits include:
    • Getting more than 7 hours of sleep a day
    • Going to bed and waking up at the same time every day
    • Avoiding alcohol, coffee, or heavy, spicy meals close to bedtime
    • Limiting screentime and blue light exposure close to bedtime
    • Making your bedroom sleep-friendly 
  • Medication changes: Certain medications can worsen POTS symptoms. So if you’re on a medication that can potentially make your symptoms worse, a doctor might suggest that you stop it, or they may prescribe an alternative.

Medication

Medications are usually recommended as second-line treatment options if lifestyle interventions are not effective at improving your symptoms. They may also be the first treatment option if you show severe symptoms at the time of diagnosis. 

The US Food and Drug Administration (FDA) hasn’t approved any medications for treating POTS. All medications used for managing POTS symptoms are off-label. However, a doctor might recommend any of these medications:

  1. Fludrocortisone, to increase blood volume
  2. Midodrine, to manage heart rate when in an upright position
  3. Low-dose propranolol, to manage palpitations and reduce standing heart rate
  4. Ivabradine, to slow down the heart rhythm
  5. Desmopressin, to expand blood volume and reduce standing heart rate
  6. Beta-blockers, to regulate heart rate

How Do You Live with POTS?

If you’re diagnosed with POTS, your doctor will create a customized treatment plan. They should also educate you about the disorder, how to manage your symptoms, and how to live actively with POTS.

A doctor will help you identify your triggers and teach you ways to avoid them. They might ask you to limit caffeine and alcohol intake and avoid exposure to heat for long periods.

Consider joining a community for others with POTS that can provide education and support from people who share the same experiences.  You may also benefit from therapy to help manage stress levels and other emotional struggles—like anxiety, depression, loneliness, shame, and hopelessness— that can sometimes accompany living with POTS. 

Don’t hesitate to reach out to family and friends when you need help handling your daily responsibilities and emotional support and comfort.

Using Cardiogram to Manage POTS

Whether you've already been diagnosed with POTS or you're experiencing symptoms and plan to speak with a doctor soon, Cardiogram can help. You can use tools like tagging and journaling to keep track of symptoms and events. And with a Cardiogram Premium account, you can easily print or export that data to share with your doctor. By doing so, your doctor can more easily give the proper POTS diagnosis, gauge the severity, create a management plan that will best support you, and observe how effective that plan is over time.

Using Cardiogram with a POTS Diagnosis:

If you've already been diagnosed with POTS, there are many ways that Cardiogram can support you along your journey:

  • Enroll in a habit. You can choose from daily exercise routines, stress relieving habits, and sleep hygiene techniques, all of which are beneficial for managing POTS. Enroll in the habits that are most catered to you based on the treatment plan laid out by your doctor.
  • Tag events. By consistently tagging symptoms or events as they occur, you can easily share this information with your doctor to help them understand whether or not a treatment plan is working, and to make adjustments if need be. You can also tag exercise and other activities to notice any trends.
  • Track symptoms. Every day, be sure to apply all symptoms you experienced throughout the day. This will help your doctor to ensure you've received the proper POTS diagnosis and to observe whether or not symptoms are improving over time.
  • Journal. Keeping detailed notes of the "who, what, when, where" of POTS symptoms and events can help you to connect dots that might have otherwise gone unnoticed.
  • Join our Facebook Community. It can be hard living with POTS, especially if you feel alone in your struggle. Our Cardiogram Community on Facebook is a great place to reach out and share your experience with others who are living with the same condition.

Using Cardiogram to Help with Diagnosis:

Since POTS can be a bit challenging to diagnose, it can be incredibly helpful to keep track of symptoms to share doctor. Of course, the more consistently you use each tool, the more valuable this information becomes. To get the best use of Cardiogram for this purpose, you can:

  • Tag potential POTS events. For instance, every time you stand up or take on vigorous activity and feel symptoms arise, tag those moments. Tagging allows you to easily access snapshots of your heart's patterns during recurring events, and will allow your doctor to observe your elevated heart rate in those instances.
  • Journal. By taking notes when symptoms arise, you and your doctor will be at an advantage, able to connect otherwise seemingly unrelated circumstances. Refer to the questions you'll likely be asked by your physician under the "How is POTS Diagnosed" section above to know what will be most beneficial to keep track of.
  • Track symptoms. Whenever you experience a recurring POTS symptom, be sure to apply it. This will help you to keep track, and allow your doctor to gauge the frequency and severity of your condition for a more accurate diagnosis. Remember, you can always add your own custom symptoms if you experience symptoms not listed.
  • Enroll in a habit. You can choose from daily exercise routines, stress relieving habits, and good sleep hygiene techniques. Just be sure you've spoken with a doctor before engaging in vigorous activity if you regularly experience discomfort.
  • Join our Facebook community. If you have questions or concerns, it's important that you first seek help and advice from your doctor. However, our Cardiogram Community on Facebook is another great resource, filled with other members who share similar experiences and enjoy helping others in the community.

To learn more about how to get the most out of your Cardiogram app, check out our Quick Start Guide.

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