Raising Awareness About PoTS

By Naomi Armet

Today, 25th of October, I am wearing purple for PoTS awareness day, a day and condition that I didn’t know even existed until this year.

Back in March, when I had Covid, I started with some really weird symptoms; high heart rate, chest pains, dizziness, body tremors, fatigue, brain fog, headaches, shortness of breath, adrenaline dumps and many more.

These continued after the Covid had cleared, so I got in touch with my doctor, who like me, after looking into my symptoms, also suspected PoTS.

PoTS, which stands for Postural Orthostatic Tachycardia Syndrome, is an abnormality in the functioning of the autonomic nervous system; which controls all bodily functions that we don’t think about like heart rate, blood pressure, digestion, breathing, bladder controls etc.

Due to this, when I stand or sometimes even sit up, there’s a drop in the blood supply to my heart and brain, so the heart races to make up for this which is what often makes all my symptoms start as my body goes into overdrive.

These symptoms can be so severe that sometimes I’ve been sure that I’m in severe danger and I have on a few occasions ended up in A&E. This is a terrifying experience in itself as although everyone I’ve dealt with has been lovely, most health care professionals I’ve seen have never even heard of PoTS, so they have no idea how to help me.

Due to this, misdiagnosis is very common with PoTS, with patients often being told their symptoms are anxiety without proper tests being done. This is why I wanted to put this post up today.

I know some of my friends on here are nurses etc and if I can try to raise awareness for anyone it’s something I want to do. On my good days I can be up and about like the best of people, but most days I’m not far from my bed due to either having a really bad flare up of symptoms or the fear of doing too much and causing this if I’m not too bad that day so far.

This is why I wanted to put this post up today. I know some of my friends on here are nurses etc and if I can try raise awareness for anyone it’s something I want to do. On my good days I can be up and about like the best of people, but most days I’m not far from my bed due to either having a really bad flare up of symptoms or the fear of doing too much and causing this if I’m not too bad that day so far.

My new daily routine includes waking up and putting my compression socks on straight away, which try to help with the blood flow by stopping it from pooling in my legs. Then going and making an electrolytes drink which brings hydration up quicker with the addition of the sodium; hydration and an extra salty diet both help with blood flow. Eating smaller portions of food more regularly helps try to prevent too much blood being used for digestion. I now use a shower chair to wash as the heat and standing combination have me close to passing out without it. And I’m also now on beta blockers to try and help stop my heart rate from getting too high.

More awareness is needed for PoTS so today is so important to me and so many others. After my cardiology appointment back in April I’m still waiting for my follow up appointment to formally be diagnosed, instead of through a letter which wasn’t even addressed to me but to my GP, and get some proper help in dealing with this as due to this being quite a rare syndrome no one knows how to deal with me if I need help whilst I’m waiting for my actual appointment, and this has proven to be debilitating to me the past few months.. which considering PoTS is becoming more common due to people getting it after Covid, really needs to change!

Click on this link for more information and advice: PoTS UK

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1 reply »

  1. I’m very sorry to read this Naomi. Many of the symptoms strike a chord with me as I have what I defiantly refer to as ’this tiredness thing’ – official label – Fatigue Syndrome – another one which both medics and the public don’t quite have a grasp of, and what it can do to your life.

    I hadn’t come across PoTS before – and that it’s often a follow-up to Covid. Yet another after-effect of Covid – Covid still being a pandemic but one which many people choose to ignore – very few wearing masks – very few testing and reporting the results – many gathering together indoors at crowded events etc. etc.

    I risk going into a rant about Covid, but mainly I want to say how very sorry I am to read this – and this happening to a young person too.

    I learnt the hard way that it really is not a good idea to push yourself. It’s not worth it. Defiance meant that I would get over-tired and be very unwell. I don’t do that now – which means that I can do some things. You’ll work it out – find the right balance for yourself – I just hope you get good medical attention.

    Sending very best wishes……