For the last three years, Covid long haulers have had to become their own advocates and researchers as they lobby for recognition, funding and proper healthcare. Their knowledge has been hard-won against a backdrop of sickness. They’ve pushed through symptoms that ravaged their previously able-bodies and become the experts of their own disease. 

That is why we decided that all the symptoms on this website should be written by patients, for patients.  As our co-founder Jenene Crossan says “They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from”. 

Although we do not intend to give medical advice, the articles have been fact-checked by a wonderful doctor who is suffering from Long Covid too. 

About the author

I had just turned 27 when I caught COVID-19 in mid-2022, and my infection was relatively mild. My initial recovery involved spending a week in bed watching endless Netflix series and sleeping away what seemed to be simply a nasty form of the flu. I assumed I would bounce back relatively soon. But I experienced ongoing symptoms for months afterwards, and it’s still happening today. POTS, or Postural Orthostatic Tachycardia Syndrome, is one of my worst symptoms.

– Male, NZ European, Pōneke/Wellington
A black-and-white line illustration of a man with his heart working hard and not enough blood getting to his head – showing what Postural Orthostatic Tachycardia Syndrome (POTS) feel like for Long Covid patients.
<em>Gravity by Tracey Thorp<em>

A brief explanation of POTS

Usually, when a person stands up after sitting, gravity distributes about 10-15% of their blood through the stomach region, hands and feet. Leg muscles constrict, blood vessels narrow, and heart rate increases slightly to keep blood flowing to the heart and brain. It also keeps a person’s blood pressure stable.

For those with POTS, this automatic adjustment in the body doesn’t work correctly. More blood pools below the heart, and not enough reaches the heart and brain. The body responds by releasing more adrenaline to encourage blood vessels to squeeze more and send blood upwards. For several reasons, the blood vessels don’t respond normally to these hormone spikes. But the heart does, so the heart rate often increases.

This autonomic imbalance causes POTS sufferers to experience uncomfortable symptoms, including:

  • dizziness or lightheadedness, particularly when you stand up (in severe cases, even partly sitting up can trigger POTS symptoms)

  • fainting

  • brain fog

  • rapid heartbeat, heart palpitations

  • shortness of breath

  • headaches

  • bloating and nausea

  • a general feeling of discomfort or illness

  • disrupted moe | sleep

Many patients with Long Covid have some Autonomic Nervous System (ANS) dysfunction, also known as dysautonomia.

These signs mean you might have POTS:

  • You experience symptoms while standing that are relieved when you lie down.

  • Symptoms have persisted for at least three months.

  • Your heart rate increases by more than 30 beats per minute within 10 minutes of standing.

  • If you’re aged 12–19, your heart rate increases by no less than 40 beats per minute within 10 minutes of standing.
  • Generally, there is no drop in blood pressure upon standing.

These criteria may not apply to those with a low resting heart rate.

In my experience

In my experience, living with POTS can be debilitating and disheartening. Firstly, there’s being referred to a specialist, waiting months to be seen, and getting a diagnosis from them. Then I have to explain the diagnosis to loved ones and colleagues, so they can try to understand what I’m going through. It’s a process that leaves you devoid of any energy.

Even then, family members and friends have great difficulty empathising: it’s something you must experience to understand fully. Kowheori Roa | Long Covid imposes many other burdens on your life, so feeling unvalidated and misunderstood can significantly affect your mental health

In terms of symptoms, I often feel an overwhelming need to lie down due to dizziness or extreme fatigue. I usually have a rapid heartbeat and heart palpitations if I stand too quickly, or spend too long standing upright in a hot shower. When these symptoms occur, my feet and toes swell and become purple – it’s a sign of poor blood circulation.

I also have regular bouts of tachycardia, often accompanied by nausea, brain fog, shortness of breath, and significant drops in blood pressure. It feels as though my body is simply ‘crashing’.

What others say POTS feels like

People’s experiences of POTS can vary greatly, but a common theme is that every day is a fight, a struggle. Some patients describe their frustration at “fighting to be heard” by healthcare providers and loved ones.

My General Practitioner will be like, ‘Oh, I don’t know anything about this.’ Like, who do I go to? And especially with the way that healthcare is set up, where you kind of have to know what specialist you have to see.

– Lynette

My grandmother does not [believe me], she thinks I’m faking it, she thinks I’m making it so much worse than it is. And that I just want to be lazy…

– Dani

Travelling is difficult, holidays are difficult. If I want to do anything, I need plan A, plan B, plan C, plan D, in case I can’t do something.

– Dani

Don’t push your boundaries, because if you go far over like I did a couple of times, you might end up worse.

– Margot

What I and others have tried

To reduce the impact of POTS on my day-to-day functioning, I take regular whakatā | rest periods (lying down with my legs raised), and allow as much time to pass as necessary during the most intense symptoms. When required, I take medication prescribed by my specialist. These are the best tools for managing my symptoms and calming my system.

The lifestyle changes listed below can also be highly beneficial. I’ve had varying degrees of success with:

  • increasing electrolyte intake

  • resting horizontally (with my legs raised)

  • wearing compression stockings/sports leggings

  • increasing my water and salt intake

  • avoiding prolonged periods of standing (or crossing my legs regularly if it cannot be avoided)

  • avoiding extreme temperatures – both warm and cold

  • eating smaller meals more frequently, instead of large meals

  • limiting my intake of carbohydrates, which cause large spikes and then crashes in my blood sugar.

The best advice I received

Beyond the practical tools and approaches listed above, the single best piece of advice I have received to manage my symptoms is to be intentional about shifting from sitting to standing very slowly, in a controlled manner.

This helps to negate the huge drop in blood pressure that rapid positional change precipitates and helps to avoid the dizziness, light-headedness and potential to lose my balance that accompanies such a drop. While this piece of advice may seem trite and inconsequential, its practical utility can hardly be overstated.

What you’d like someone to say to you / how others can help

Despite the fact that there is currently no single cure for the condition, hope still very much remains. It is important to know that most individuals suffering from POTS find that their symptoms gradually improve over time when they make lifestyle changes such as improving their diet and performing suitable exercise, as well as receiving quality medical treatment.

Key terms

How is POTS diagnosed?

Think you have POTS? The best person to consult is a cardiologist who specialises in POTS or dysautonomia (if possible). All medical professionals should first look to rule out other potential causes of your symptoms, before definitively diagnosing you.

Patients with POTS-like symptoms may take some or all of these tests:

POTS is often not understood

Many healthcare professionals do not know that POTS / dysautonomia exists. Although it has a long history, it was thought to be caused by anxiety. In 1993, POTS was formally defined by a team of researchers from the Mayo Clinic.

Before the pandemic, the average time to diagnosis was over five years and a quarter of the patients saw 10 doctors before being diagnosed (Physician Patient Interaction in Postural Orthostatic Tachycardia Syndrome (2014).

If you think you may have this condition, it could help to take a printout of this information to your appointment. Cardiologists who specialise in POTS / dysautonomia are the best to consult if it is possible, although these are rare.