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POTS: The Remarkable condition

POTS is a remarkable condition. I say this for many reasons. It is remarkable because of how prevalent it is in the general population and yet how little recognition there is for it by the medical profession It is remarkable in that it tends to affect generally young, otherwise healthy and clean living people whose lives it changes overnight. It is remarkable on how debilitating it is for the sufferer and yet how invisible it is to the outsider It is remarkable in that it affects virtually every system of the body and patients spend months and months seeing every specialist for every system and yet remain undiagnosed for years. It is remarkable in that it was first described in 1871 and yet to this date we do not have an effective cure for it. POTS stands for Postural orthostatic tachycardia syndrome. When a patient with this condition stands up or even sits up, they will find that their heart rate shoots up preciptiously and they will develop very fast and unsettling heart palpitations. These may be accompanied with a sensation of severe dizziness and even blackouts. Given the nature of these symptoms, patient understandably avoid standing up and this results in deconditioning, poorer performance at work and school, social isolation because they simply cant do what they would like to with friends and family and a huge decline in their overall quality of life. These symptoms can develop overnight and we dont know why but we do believe that it is perhaps a genetic vulnerability that is triggered by an infection or trauma or a period of prolonged bed rest and deconditioning. I believe that the majority of patients with long COVID probably have POTS which was triggered by the infection. As our awareness has improved it is becoming apparent that this is not just a condition which manifests when people stand, it affects them even when they are not standing. We now think of POTS as a disequilibrium between the flight and fight system and the rest and digest systems. These patients are always in flight and fight mode and never in rest and digest mode. They are always tired and wired. They never have a good nights sleep, they are always tired, they are troubled with brain fog, they are always bloated and nauseous because their digestion is left impaired. Unfortunately when these patients go to see their doctor, the doctor does not find anything structurally wrong and therefore after repeated visits asking for help, they are branded as having anxiety or being crazy. This lack of empathy and support makes everything worse and patients can spend several years being unfairly stigmatised and rejected in this manner by the medical profession, their colleagues and even family members. For me as a human, as a doctor and someone who looks after patients with this condition, this is heartbreaking. The reality is that with engagement, empathy, education and empowerment, patients do get much better. I dont think i have come across a single patient with POTS who hasn’t broken down in tears in my clinic when i have told them that i know what is going on with them. Everyone says the same thing. Thank god someone believes me.