PoTS Awareness Day on 25 October aims to raise awareness about Postural Orthostatic Tachycardia Syndrome (PoTS), an under-recognised and debilitating condition.
PoTS primarily leads to ‘orthostatic intolerance’, where symptoms are mainly experienced upon transitioning to an upright position. These symptoms can range from mild to severe, often fluctuating from day to day. Common symptoms include dizziness/light-headedness and palpitations (awareness of heartbeat); however, the list is extensive. The key diagnostic feature of PoTS is a persistent and abnormal increase in heart rate after sitting up or standing.
PoTS is thought to affect at least 0.2% of the general population, and is more prevalent in females aged between 15 and 50, although it does occur in males.
Importantly, many symptoms overlap with other conditions such as ME/CFS, and a proportion of individuals with ME/CFS may also have PoTS as a co-existing condition. It is vital to distinguish between the two as their management approaches differ. However, getting a PoTS diagnosis can be a challenging process because many healthcare providers are still unaware of the condition.
Understanding PoTS and its causes
While the exact mechanisms of PoTS remain incompletely understood, several factors and related disorders have been identified as potential triggers. It can develop following a viral illness like glandular fever (Epstein-Barr virus) or COVID-19, or be associated with pregnancy, trauma, or rapid growth in teenagers.
There are thought to be different types of PoTS, with researchers pointing to a malfunction in the autonomic nervous system which is responsible for regulating functions like heart rate, blood pressure and digestion. When a healthy person stands up, their body swiftly contracts blood vessels and slightly increases the heart rate to ensure an adequate blood supply to vital organs such as the brain. In PoTS, this process goes wrong, causing an excessive rise in heart rate to compensate for an altered blood flow to vital organs.
Various conditions – including ME/CFS, Ehlers-Danlos syndrome, hypermobile spectrum disorder, mast cell activation syndrome, inappropriate sinus tachycardia and autoimmune disorders – may be associated with PoTS.
PoTS symptoms are diverse and encompass:
- Palpitations (sensation or awareness of heartbeat)
- Cognitive difficulties (brain fog)
- Sense of anxiety
- Shortness of breath
- Visual problems
- Gut problems
- Chest pain
- Sleep disturbances
- Bladder problems
Diagnosing PoTS can be challenging as its clinical presentation varies from patient to patient. However, a persistent heart rate increase of 30 beats per minute (or 40 for individuals aged 12 to 19) upon standing is a hallmark indicator. This feature must be present for over three months. Importantly, blood pressure may not necessarily drop in PoTS.
The primary diagnostic test for POTS is the active stand test. During this test, the patient lies flat for several minutes while heart rate and blood pressure are recorded. Upon standing, further measurements are taken over a 10-minute period. If diagnosis remains uncertain, patients may undergo a tilt table test, and additional tests like ECGs and blood tests are used to rule out other conditions.
Misdiagnosis of POTS is a significant concern, primarily due to the overlap of symptoms with other conditions and limited awareness among many medical professionals. As a result, this syndrome often goes undetected, leading to patients receiving inaccurate diagnoses such as anxiety, depression, vasovagal syncope or ME/CFS. According to PoTS UK, the average time to diagnosis from symptom onset is 7 years. This underscores the pressing need for increased awareness and education among healthcare providers to help them recognise the unique features of POTS and distinguish it from other conditions. This will facilitate more timely and appropriate interventions, ultimately enhancing the quality of life for individuals living with POTS.
Management of PoTS
PoTS can be so debilitating because many things that people commonly engage in may aggravate symptoms. This includes, but is not limited to, drinking coffee and other caffeinated drinks, alcohol consumption, eating refined carbohydrates such as white bread and pasta, taking hot showers, and being out in hot weather.
Managing PoTS requires a multifaceted approach involving lifestyle changes, medications, and other interventions tailored to individual needs. Lifestyle changes include increasing fluid intake, a high-salt diet, dietary awareness, gradual introduction of exercise, and temperature regulation strategies.
Compression garments like socks or abdominal binders can help improve blood flow and reduce symptoms. Medications to help regulate heart rate and blood pressure may be prescribed in some cases. These medications are often prescribed off-label since there are currently no medications licensed specifically for PoTS.
One of the challenges in dealing with PoTS is the lack of a separate clinical guideline provided by the National Institute for Health and Care Excellence (NICE). For those seeking information, the NHS website directs individuals to the PoTS UK website as a valuable resource for further insights.
Symptom overlap and differences with ME/CFS
ME/CFS is associated with various conditions, among which POTS stands out due to its significant symptom overlap. While there are numerous commonalities, there are also key differences between them.
Both PoTS and ME/CFS are associated with fatigue, hence it is important for people with ME/CFS who have comorbid PoTS to understand that treatment options are available for the latter.
As with PoTS, individuals with ME/CFS often report orthostatic intolerance, meaning that symptoms worsen upon assuming an upright position despite not qualifying for a PoTS diagnosis.
Perhaps the most significant difference between PoTS and ME/CFS is their response to exercise. While graded exercise can be beneficial for some PoTS patients when carefully managed, it is typically contraindicated in ME/CFS. For many with ME/CFS, graded exercise can lead to post-exertional malaise and significant worsening of symptoms.
According to a review into PoTS, whilst the long-term prognosis of PoTS is not well explored, around 50% of patients spontaneously recover within one to three years. This contrasts with ME/CFS which, whilst individuals may report improvements in symptoms, has lower prospects of recovery.
Living with PoTS can be challenging, but with proper management and support, many individuals experience major improvements in quality of life. Collaboration with healthcare professionals and support from friends and family are invaluable in coping with the emotional toll of chronic illness.
PoTS Awareness Day is a vital occasion for raising awareness and advocating for research into this often under-recognised condition. By sharing information about PoTS and its distinctions from ME/CFS, we aim to promote greater understanding of both conditions.