Woman speaks out about ‘debilitating’ condition often mistaken for anxiety amid huge surge in cases

A life-long condition which has significantly increased in cases in recent years has finally been recognised in UK Parliament, but you might have never heard of it before.

‘Anxiety’, ‘laziness’, or even ‘TikTok fad’ are names you might hear thrown around when someone tells you they have this condition - but for people like me, it is an everyday battle to live a somewhat normal life.

It is estimated that 0.2 per cent of the UK population have this incurable syndrome, which is roughly one in every 500 people, but it mostly seems to impact women between the ages of 15 and 50.

However, since the Covid-19 pandemic and prevalence of Long Covid, the surge in cases has been overwhelming for the NHS as well as those who develop it.

This condition is known as Postural Orthostatic Tachycardia Syndrome (PoTS).

I couldn't regulate my temperature at the cardiologist's office during a 'flare up'

What is PoTS?

While it isn't understood what causes it, it has been found to present itself after developing viral illnesses such as Long Covid, chronic conditions, or even pregnancy.

According to PoTS UK, PoTS is an ‘abnormal response by the autonomic nervous system to upright posture’, which sees a person's system misfire, so to speak.

Essentially, it’s an autonomic nervous system disorder, which affects everything that you don’t control, such as your heart rate and blood pressure regulation, digestion, bladder control, sweating, stress response, temperature regulation and circulation system.

The sympathetic nervous system is part of this autonomic nervous system, which provides the ‘fight or flight’ or ‘stress’ response during life-threatening situations.

When it’s activated, a chemical called norepinephrine is released, which increase the heart rate and blood pressure and leads to an adrenaline dump. To us PoTSies, this activation can happen at any time, even if there's no danger.

‘I felt like I was having a heart attack’

I can remember the first time I noticed something was wrong with my chest.

I was sitting on my sofa over a year and a half ago, when suddenly, a strange throbbing sensation began around the area of my diaphragm. There was no pain, but it continued for a week, which would cause me to panic, and in one instance, it was followed by a burst of heart palpitations and high heart rate.

I struggled to breathe, my heart felt like it was going to explode out of my chest, I felt dizzy, and my hands became tingly and cold. In that moment, I felt like I was having a heart attack.

When the EMTs (Emergency Medical Technicians) arrived, my vitals told a different story, but due to the nature of the ‘throbbing’ and palpitations, I was taken to the hospital.

En route, I was asked by a male EMT if I had considered it being an ‘anxiety’ attack.

Let me just tell you; I was absolutely debilitated by back-to-back anxiety attacks from the age of 15 until maybe 21. I assured him that it was not anxiety.

Still, even hours after having tests performed at Urgent Care, the doctor dismissed it as symptoms of my pre-existing hypothyroidism - something I was born with and had never experienced heart rate issues with before.

I was discharged and the throbbing became a normal part of my life, but it was followed by more symptoms - a stabbing sensation above the area of my heart, paired with dizziness, elevated heart rate and a feeling that something serious was happening.

The diagnosis process was long and left me without answers

As the months followed, things got worse.

I could no longer exercise, walk up the stairs without getting out of breath or feeling faint, carry my children, or enjoy life without having a sudden onset of symptoms.

It seemed like this was just the beginning of my issues with getting answers about the symptoms that would rob me of my quality of life.

What are the symptoms of PoTS?

Those of us who live with the condition experience multiple symptoms that include:

• Rapid palpitations
• Chest pains
• Light-headedness
• Blackouts
• Nausea
• Fatigue
• Difficulty thinking
• Gut problems
• Headaches
• Tremulousness
• Sleep abnormalities
• Blood pooling

According to PoTS UK and the NHS, symptoms of the condition are life-long, however, like some other illnesses like Multiple Sclerosis (MS), you can be put in remission, and your symptoms can be managed to a point where you can live a normal life.

Unfortunately, for many, the disability caused by PoTS is severe, with PoTS UK saying 50 per cent of patients are unable to attend work or school due to their symptoms, and their quality of life is destroyed.

I know people who are unable to leave their beds, need a wheelchair, or have carers look after them.

Symptoms may also get worse if someone is on their period, or thanks to stress, caffeine, alcohol consumption, eating carbs, or just simply existing.

Personally, I wonder if my first pregnancy caused its onset six years ago, as it was a terrible and complicated pregnancy, and my health never recovered.

Is there a cure for PoTS?

With no known cure for PoTS, patients are given beta blockers to lower their heart rate. They are also told to eat more salt and drink more water to increase the body’s blood volume, aimed to stop the heart from struggling to circulate blood that pools to the feet anytime they stand up.

However, the first barrier is to even get diagnosed in the first place; according to PoTS, 85 percent of patients are told that their symptoms are 'all in their head’, making it a long and tiring battle to be heard.

The dreaded Tilt Table Test is something that diagnoses PoTS (yacobchuk/ Getty Stock)

‘The diagnostic process was long and tiring’

PoTS was first suggested to me when I finally saw the cardiologist weeks ago, just one day after writing a story about what it meant to be a Spoonie. Little did I know that I was one too.

But the thing with PoTS is that it’s often misdiagnosed, with the average time to be diagnosed in the UK from symptom onset being seven years - something Parliament spoke about on 14 October as they discussed an action plan to support people like me, with debate turning to funding, education and more.

I had to have a 24-hour monitor fitted to rule out heart rhythm problems, blood tests to check my thyroid, iron levels, sodium, magnesium, hydration and so much more to rule out serious and life-threatening causes.

From there, I was sent for multiple EKGs, a heart ultrasound, a chest X-Ray and finally, the dreaded Tilt Table Test - something that sees the patient strapped to a medieval-looking table and tilted from lying down to an almost upright position to force the body into presenting symptoms of your worst day.

Perhaps with more awareness, we can find a more manageable - and faster - treatment option.