Postural Orthostatic Tachycardia Syndrome (POTS) is a
complex disorder of the autonomic nervous system characterised by an abnormal
increase in heart rate upon standing, often accompanied by various symptoms
such as light-headedness, palpitations, fatigue, and cognitive difficulties. Thermoregulatory,
gastrointestinal and bladder dysfunction are also common. This condition
profoundly impacts the quality of life for those affected.
POTS poses a diagnostic challenge, particularly in primary care settings, due to its multifaceted presentation and overlap with various medical conditions. Despite its prevalence, there exists a significant diagnostic delay, especially among females, who experience prolonged delays compared to men, despite being more commonly affected. Furthermore, females are disproportionately at risk of having their symptoms misattributed to anxiety and depression, further complicating timely diagnosis and appropriate management.
Recognising these disparities and fostering a proactive approach to investigations in primary care settings is crucial for expediting POTS diagnosis, enhancing patient outcomes, and alleviating the burden of this debilitating condition on individuals and healthcare systems. This guide aims to empower primary care practitioners with the necessary tools and strategies to confidently identify and address POTS, ultimately improving the quality of care for affected individuals.
Begin the diagnostic process by obtaining a comprehensive medical history from the patient. Pay close attention to symptoms suggestive of autonomic dysfunction, including :
It is important to exclude other less common conditions presenting with similar features to POTS. Perform a thorough evaluation to rule out other disorders manifesting with orthostatic intolerance symptoms and tachycardia. Diagnostic resources can be found below:
Differential Diagnosis:
Tilt Table Testing Not Required: It’s important to note that a formal tilt table test is not mandatory for the diagnosis of POTS. While tilt table testing can be useful in some cases, especially for research purposes or when the diagnosis is unclear, it is not essential for the clinical diagnosis of POTS.
Optimal Testing Time:
Preparation:
Active Standing Test:
Diagnosis of POTS requires:
Interpretation and Considerations:
There appears to be multiple comorbidities that have a higher prevalence in POTS than the general population. These include (but are not limited to):
The risk of misdiagnosis of anxiety and depression in POTS is very high, particularly amongst women. Many anxiety surveys primarily rely on the reporting of somatic symptoms, which are likely to be common in individuals with Postural Orthostatic Tachycardia Syndrome (POTS). This reliance on somatic symptoms may result in an inaccurate representation of the true prevalence of anxiety in POTS patients. For more detailed information, please refer to an excellent article on the relationship between POTS and anxiety disorders: HERE
POTS is not a condition that is normally ‘outgrown’.
Depending on the underlying cause and severity, some individuals may continue to experience symptoms throughout their lifetime.
It is important to know that 25% of patients diagnosed with POTS are debilitated to the extent that they cannot attend school or work.
Diagnostic delays are common, and many patients are mis-diagnosed or have their symptoms attributed to psychogenic causes. Not only does this compound the impact of their illness but it likely delays access to appropriate care and treatment.
As POTS has a peak onset in the adolescent/young adult years, it has the capacity to disrupt education, social, economic, and vocational engagement, and development. Early recognition and intervention are paramount to maximising positive outcomes for patients. Compassionate, multidisciplinary care is essential to improving quality of life.
Lifestyle modifications should be the first line therapy for POTS and require attention to education to fully effect the benefits
Salt and Fluid Intake:
Compression Garments
Dietary Adjustments
Exercise:
Supportive Psychotherapy
Medication Avoidance
Management of Triggers
Heart Rate Control:
Plasma Expansion:
Vasopressor Enhancement:
If you suspect your patient may have POTS, the following assessments may be helpful in confirming a diagnosis.
To establish the absence of secondary causes of symptoms the following investigations are recommended before confirming a POTS diagnosis.
My name is Zoe and my children, and I all have POTS.
My oldest child was 13 when she started experiencing continuous headaches, extreme fatigue, dizziness, fainting, stomach and pain issues. We were in and out of the hospital and our experience was not an easy one. A number of times we were told that it was in her head. We even got told once that she just had to learn to “live with it”. She was so unwell that she had to home school for a year and it felt like her whole future was being ripped away from her.
It took over a year for me to research and find what I thought may be wrong with her and then a few more months before a doctor diagnosed her with POTS. Fast forward to my youngest child turning 13 and her health deteriorated quickly but at least this time we knew what was wrong.
Caring for children who have chronic health can be all-consuming and so exhausting. I find I am constantly second-guessing myself. I find must advocate hard for my children but at the same time I’m also grieving for my children’s ability to do the things every normal teen should be doing. It definitely takes its toll on me.
We were lucky enough to hear about a wonderful cardiologist and a clinical nurse in Adelaide who understood POTS and who have really changed my children’s lives. While going through the process of diagnosis I started to realise that my diagnosis of chronic fatigue at 13 was probably not right and subsequently with further testing I was also diagnosed as having POTS. Suddenly so many parts of my life started to make sense. We have since learnt a lot about POTS and the many conditions that go along with it. It sounds terrible but it has been great to finally put all the pieces of the puzzle together and learn about ourselves.
In our house, we have a ‘no victim mentality’ rule. We are allowed to get angry, upset, frustrated and sad but we always focus on what we can do. We are resilient but tired. For anyone who has just been diagnosed please look after yourself, seek help if you need it and know that there is a way of managing POTS and that life may not return to normal, but you will find a new normal. You’ve got this.
Growing up, Alexa was a happy, healthy child. She loved school and enjoyed many extra-curricular activities. At 15, she had a severe bout of Epstein Barr virus that landed her in bed for weeks. Recovery was slow; and while most of the initial symptoms eventually resolved, fatigue was ongoing and relentless. There were many days when she was simply too tired to get up. In addition, she suffered with headaches, debilitating brain fog, and feelings of anxiety with nausea when upright. My once active, rosy-cheek child had turned into a pale, listless shell of her former self – and despite multiple consultations with a number of doctors, no-one had any answers.
By 16, it became clear that Alexa remained too unwell to attend school full time. Thankfully, her teachers were supportive and the decision was made for her to complete her senior schooling over three years instead of two. But, even though she now had a reduced subject load, attendance remained a daily struggle; and she missed more classes than she was able to attend.
The future looked bleak; Alexa felt she could no longer make plans to pursue her dreams – she could barely function, let alone study, work or travel. She dropped all extra activities and gave up on her music studies. Her once busy social life became non-existent, and her peers celebrated their graduation without her.
As a parent, it was heartbreaking to witness. I felt helpless and extremely frustrated at the lack of understanding and care available; looking for answers and chasing treatment options for a condition with no name was both expensive and very time-consuming. Alexa needed daily support and as a single parent, I could no longer work full time.
It was after another prolonged episode of brain fog, heart palpitations and severe nausea that our paediatrician suggested Alexa, then 17, may have POTS. We were referred to a specialist cardiology clinic and that day, I did cry – finally, we had an answer! Finally, there were treatment options available. We were also very excited to learn that vital research was underway.
While life is nowhere near normal yet, Alexa’s health and quality of life have improved under care of her POTS clinicians. She has had some success with medication, and she has taken the suggested lifestyle adaptations in her stride – salt, water and compression tights are her constant companions. Postgraduate studies are back on the cards; and, under guidance from our fantastic POTS team, we are both looking forward to the future.
