Understanding Postural Orthostatic Tachycardia (POTS)
The not so rare health condition you may never have heard of
October is Dysautonomia Awareness Month! This month is an opportunity to increase awareness about dysautonomia, educate people on the condition and related syndromes, such as POTS, and to promote continued research in this area. While dysautonomia and POTS are not rare conditions, in fact dysautonomia affects approximately 70 million people worldwide, these conditions are all too often overlooked and misunderstood, even within the medical community.
In my clinical practice as an occupational therapist, I support individuals with POTS or symptoms of autonomic nervous system dysfunction. If you are struggling with frustrating POTS or dysautonomia symptoms and looking for support to improve your health and quality of life, reach out to receive the care you deserve.
This post will dive deeper into postural orthostatic tachycardia syndrome, or POTS, its relationship to dysautonomia, common symptoms, causes, prevalence, and what to do if you suspect you have it.
What is POTS and how is it related to dysautonomia?
Dysautonomia is an umbrella term for 15 different health conditions that all involve a dysfunction of the autonomic nervous system. Your autonomic nervous system is responsible for regulating the “automatic” functions throughout the body. Without you consciously thinking about it, your autonomic nervous system adjusts your breathing, heart rate, blood pressure, temperature, digestive processes, pupil dilation, and more so that you can do the things you need to do everyday. For people with a form of dysautonomia, their body has a difficult time regulating their autonomic nervous system, which can lead to a wide variety of symptoms in the body.
Postural Orthostatic Tachycardia (POTS) is one type of dysautonomia, and is characterized by a significant increase in heart rate (over 30 beats per minute in adults) following a change in position, for example moving from laying down or sitting to standing. While POTS is diagnosed by measuring someone’s heart rate, POTS can affect many different systems in the body.
What are common symptoms of POTS?
While the hallmark symptom of POTS is tachycardia (rapid heart beat), people with POTS can experience a range of whole body symptoms including:
Lightheadedness or dizziness
Fainting (syncope) or nearly fainting (presyncope)
Chest pains
Shortness of breath, shallow breathing
Fatigue
Fluctuating blood pressure
Headaches
Digestive challenges/GI upset
Poor circulation (blood pooling, difficulty regulating temperature)
Sensory sensitivities
Brain fog, and more…
While POTS is sometimes called the “dizzy syndrome” or “fainting syndrome”, these nicknames downplay the complexity of this diagnosis and what people living with POTS are experiencing.
Who gets POTS and what causes it?
POTS most often affects women (about 80% of POTS patients are female) between the ages of 15 and 50, but others can develop it as well. POTS is a clinical syndrome, or clustering of symptoms, that is triggered by a precipitating event, though this root cause can often be difficult to identify and more research is needed in this area. Some of the most common causes of POTS are a concussion or brain injury, surgery, physical trauma, pregnancy, puberty, and a viral illness, such as COVID-19. While many people have never heard of POTS, it is not rare and has increased from affecting an estimated 3 million Americans to 6 million Americans since the pandemic began.
It's important to note that POTS is NOT caused by anxiety, though many of its symptoms (rapid heartbeat, chest pains, rapid breathing) might look like anxiety or panic attacks. So many people with POTS are misdiagnosed with mental health conditions or have their symptoms written off as “all in their head.”
How does POTS impact quality of life?
POTS is an invisible health condition meaning that people often “look fine on the outside” despite experiencing very challenging symptoms internally that significantly impact their quality of life. POTS can vary significantly in its severity and impact on individuals - while some experience mild symptoms it can also be disabling and prevent people from working, going to school, or completing daily tasks. It has been estimated that 25% of individuals with POTS are disabled and unable to work. Working with an occupational therapist trained in the autonomic nervous system can help you better manage your symptoms, improve your quality of life, and do more of the things that matter to you.
What to do if you suspect you have POTS?
Getting a diagnosis of POTS can be difficult given the varied way its symptoms present and the lack of widespread awareness, though hopefully this is changing. POTS is often diagnosed and medically managed by a neurologist, cardiologist, or an autonomic specialist. If you identify with the symptoms mentioned in this post, reach out to me to learn more about how holistic occupational therapy can support you wherever you are on your health journey. While receiving a POTS diagnosis can be overwhelming, there are professionals and resources out there to help you get back to doing the things you love.
I hope this post gave you some new information and resources about POTS. All October, I’ll be sharing more information about POTS including tips for managing symptoms, tips for engaging in daily activities and exercise, finding community and support, and more. Subscribe to get all the updates!