Just because you can’t see it, doesn’t mean that it’s not there.

This week, Neue will be taking a look at ‘unseen diseases’ starting with POTS, short for Postural Orthostatic Tachycardia Syndrome.

It’s a mysterious syndrome that can turn your life upside down and probably many of you have never heard of it.

POTS, which is a form of autonomic dysfunction, can be a debilitating and frustrating illness that varies from day-to-day. The autonomic nervous system controls pretty much everything in your body. It is basically the stuff you don’t have to think about having to do (pupil dilation, sweating, blood pressure, heart rate, digestive system, temperature regulation, breathing, etc).

POTS is an abnormal increase in heart rate that occurs after sitting up or standing – where your heart rate speeds up by 30 or more beats per minute with little or no change in blood pressure. Such an increase in heart rate may mean that your cardiovascular system is working as hard as it can to maintain blood pressure and blood flow to your brain.

According to a CNN report, it is estimated that POTS affects between 1 and 3 million Americans. But since so few doctors are educated on the symptoms, experts believe numbers could be much higher, both in the US and in the rest of the world.

It’s All In Your Head?

(Photo: Shutterstock)

Sometimes people with POTS are told that “it’s all in your head,” implying that the cause of their symptoms is psychological.

Given how common POTS symptoms are and how unfamiliar many doctors are with this condition, diagnostic mishaps do happen, according to a report published on the Johns Hopkins Medicine website.

POTS is frequently misidentified as chronic fatigue syndrome, fibromyalgia, myofascial pain syndrome, anxiety disorder, ADHD, irritable bowel syndrome, myositis, etc. It is also possible that you have both POTS and one of these conditions, which may complicate the diagnosis.

What’s It Like Living With POTS?

A woman shared what it is like living with POTS in an article published on the website of Global Genes, a global non-profit advocacy organisation for individuals and families fighting rare and genetic diseases.

“POTS is a syndrome that takes your life from you, not by death, but by the limitations it causes,” said the writer who goes by the name Christy.

According to her, simple things that people all take for granted – things like grocery shopping- have become huge challenges for her.

“POTS can cause a myriad of bizarre symptoms that stem from poor circulation. My blood pressure often goes so low it is undetectable, and my heart rate ranges between 25 beats a minute to 240. Just being on my feet longer than a minute or two makes my heart rate go up and my blood pressure bottom out,” she said.

POTS was only formalised as a real medical condition in 1993, so to date, there is little research on the disease and even fewer treatment options.

“The best advice I can give someone who has been recently diagnosed with POTS is to never take no for an answer. Few doctors know anything about POTS, so do not let them treat you as if you’re making things up. Learn all you can about POTS and don’t let the medical profession push you around,” she said.

Johnny, who was diagnosed with POTS in 2013, meanwhile, said that his whole life changed after returning from the hospital.

In an article he wrote for the POTS UK website, he said: “POTS isn’t just fainting – it’s an illness of many different symptoms that affects us differently every day. The list is so very long: the chest pain, shoulder pain, the lack of concentration, brain fog, nausea, the list goes on … I went from being a normal everyday working man to being incapacitated. My life had changed completely. I couldn’t leave the house; mobility was and still is a massive issue. I became depressed living in constant fear of the next onset on symptoms, a constant sense of doom and fear of death in the back of my mind.”

Fortunately, things began to improve for Johnny after he attended counselling sessions.

He then began to learn to accept the biggest problem with chronic illness is being able to accept what is happening to you.

“It was hard longing for how I used to be, thinking about what would happen in my future, etc. What I began to realise is that now is the most important thing – this very moment – and we have to learn to live in the moment. This is now how I accept this life debilitating illness. I have days when the most simple of tasks becomes a challenge but now I can cope a lot better with it,” he said.

*The purpose of this article is to inform and educate the public about POTS. The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional.

Neue Wants To Hear From You

Do you have a story to share like Christy’s and Johnny’s? Do you have any stories you’d like the Neue team to look into? You can get in touch with us by dropping an e-mail here. All e-mails received will be treated with strictest confidentiality.