What can be worse than going into a hospital and being told that you’re not ill and that it’s all in your head?

For Gef reader Samantha Ash, this is something she has experienced, despite having a diagnosis.

The condition she lives with is called Postural Orthostatic Tachycardia Syndrome (POTS) and while it is something Samantha was diagnosed with in 2020, the condition is now being linked to some cases of long Covid. You can find out more here.

What can be worse than going into a hospital and being told that you’re not ill and that it’s all in your head?

For Gef reader Samantha Ash, this is something she has experienced several times, despite having a diagnosis.

The condition she lives with is called Postural Orthostatic Tachycardia Syndrome (POTS) and while it is something Samantha was diagnosed with in 2020, the condition is now being linked to some cases of long Covid. You can find out more here.

What is POTS?

NHS England describes POTS as ‘an abnormal increase in heart rate that occurs after sitting up or standing’, some typical symptoms include dizziness and fainting.

Diagnosis and Treatment

For Samantha, being diagnosed was not an easy journey and meant she had to go off-island to see a specialist cardiologist in London. While she had been living with the condition without knowing what it was, Samantha said that feeling that she wasn’t being listened to before her diagnosis was sometimes worse than the condition itself.

She said: ‘They kept saying to me, “you’re underweight”, “you’re anxious, are you stressed about anything”? It got to the point where I was saying no but I will be if you carry on not listening to me. In the end, it was a three-month wait to get a cardiology appointment, so I paid for one. I thought, no I’m not waiting three months when I could potentially have a heart problem. So I paid to see the doctor and he said there was nothing wrong electrically or structurally but he wasn’t answering my question as to why my heart was still racing all the time.’

It was only after getting a second opinion, as well as doing some of her research, that doctors were able to diagnose Samantha with POTS. She said that getting a diagnosis lifted a great weight off her mind as she felt it was being recognised that what she is suffering from is a medical condition and not, as some suggest, in her mind. 

Sufferers can often faint, though Samantha said this isn’t something that happens to her, though she does feel close to fainting at times. While there is no cure for POTS, there is a range of treatments available such as Ivabradine, verapamil, midodrine and salt tablets which can help to control symptoms. 

Upsetting 

As if living with the condition isn’t bad enough, Samantha said she and other sufferers she knows sometimes also have had to deal with clinicians previously not being aware of POTS, leading to delay in them seeking treatment when an attack occurs.

Samantha said: ‘I would just like the medical profession to stop treating us as just anxious and investigate our problems and ask: Is it possible she has POTS. We have been told we’re faking, a paramedic once told me I was obsessed with my heart. A locum cardiologist from the Netherlands told me I was overusing my asthma meds, which if he’d read my notes properly, he would have realised I had an asthma episode, causing me to need a nebulizer. I was frightened to take my asthma meds after that, for fear of the same thing happening. 

‘People have been accused of having psychiatric disorders we do not have. Because they don’t know anything about Pots. I now have to carry a letter from my consultant in London, Dr Nicholas Gall, at Kings College hospital, which details pots and the protocol when I end up in ED. I should not have to carry that letter. They should already know. It’s common, but rarely understood.’

Manx Care

While Manx Care is unable to discuss any individual cases and much of the issues around Samantha’s initial treatment occurred before it was created, Consultant Cardiologist, Mark Hall spoke to Gef to explain why POTS can prove difficult to identify.

Dr Hall said: ‘It can be difficult to diagnose as it is fairly recently described, it also overlaps with a number of other conditions which can make diagnosis difficult. It’s not well understood as, although we understand that the heart rate increases inappropriately with changes in posture, and we know it is related to the interaction between the blood pressure sensors, brain and heart, we don’t fully understand the mechanism, or why it affects some people but not others. That said, POTS is well-known within Cardiology as it tends to be a specialist diagnosis.’

Manx Care also NHS England’s website as somewhere people can read more about the condition and how it can be managed.

Long Covid

While Samantha wanted to raise awareness of POTS to outline it to other people, she also wanted people who have experienced cardiac issues since having had Covid to consider whether they could be living with POTS.

Research being undertaken by the globally respected John Hopkins School of Medicine, based in Baltimore, USA, is suggesting that the coronavirus can be a trigger for POTS. 

Dr Tae Chung, Assistant Professor of Physical Medicine and Rehabilitation at John Hopkins Medicine, has said: ‘The autonomic nervous system regulates functions we don’t consciously control, such as heart rate, blood pressure, sweating and body temperature. Malfunction in any of these areas can produce symptoms that can be shared by numerous conditions. Doctors who are not familiar with POTS may dismiss these symptoms as lingering effects of COVID-19 — or even psychological symptoms. At the same time, POTS can be very debilitating and requires specific treatment, so an accurate diagnosis is vital.’

NHS England describes POTS as ‘an abnormal increase in heart rate that occurs after sitting up or standing’, some typical symptoms include dizziness and fainting.

Diagnosis and Treatment

For Samantha, being diagnosed was not an easy journey and meant she had to go off-island to see a specialist cardiologist in London. While she had been living with the condition without knowing what it was, Samantha said that feeling that she wasn’t being listened to before her diagnosis was sometimes worse than the condition itself.

She said: ‘They kept saying to me, “you’re underweight”, “you’re anxious, are you stressed about anything”? It got to the point where I was saying no but I will be if you carry on not listening to me. In the end, it was a three-month wait to get a cardiology appointment, so I paid for one. I thought, no I’m not waiting three months when I could potentially have a heart problem. So I paid to see the doctor and he said there was nothing wrong electrically or structurally but he wasn’t answering my question as to why my heart was still racing all the time.’

It was only after getting a second opinion, as well as doing some of her research, that doctors were able to diagnose Samantha with POTS. She said that getting a diagnosis lifted a great weight off her mind as she felt it was being recognised that what she is suffering from is a medical condition and not, as some suggest, in her mind. 

Sufferers can often faint, though Samantha said this isn’t something that happens to her, though she does feel close to fainting at times. While there is no cure for POTS, there is a range of treatments available such as Ivabradine, verapamil, midodrine and salt tablets which can help to control symptoms. 

Upsetting 

As if living with the condition isn’t bad enough, Samantha said she and other sufferers she knows sometimes also have had to deal with clinicians previously not being aware of POTS, leading to delay in them seeking treatment when an attack occurs.

Samantha said: ‘I would just like the medical profession to stop treating us as just anxious and investigate our problems and ask: Is it possible she has POTS. We have been told we’re faking, a paramedic once told me I was obsessed with my heart. A locum cardiologist from the Netherlands told me I was overusing my asthma meds, which if he’d read my notes properly, he would have realised I had an asthma episode, causing me to need a nebulizer. I was frightened to take my asthma meds after that, for fear of the same thing happening. 

‘People have been accused of having psychiatric disorders we do not have. Because they don’t know anything about Pots. I now have to carry a letter from my consultant in London, Dr Nicholas Gall, at Kings College hospital, which details pots and the protocol when I end up in ED. I should not have to carry that letter. They should already know. It’s common, but rarely understood.’

Manx Care

While Manx Care is unable to discuss any individual cases and much of the issues around Samantha’s initial treatment occurred before it was created, Consultant Cardiology, Mark Hall spoke to Gef to explain why it can prove difficult to identify.

Dr Hall said: ‘It can be difficult to diagnose as it is fairly recently described, it also overlaps with a number of other conditions which can make diagnosis difficult. It’s not well understood as, although we understand that the heart rate increases inappropriately with changes in posture, and we know it is related to the interaction between the blood pressure sensors, brain and heart, we don’t fully understand the mechanism, or why it affects some people but not others. That said, POTS is well-known within Cardiology as it tends to be a specialist diagnosis.’

Manx Care also NHS England’s website as somewhere people can read more about the condition and how it can be managed.

Long Covid

While Samantha wanted to raise awareness of POTS to outline it to other people, she also wanted people who have experienced cardiac issues since having had Covid to consider whether they could be living with POTS.

Research being undertaken by the globally respected John Hopkins School of Medicine, based in Baltimore, USA, is suggesting that the coronavirus can be a trigger for POTS. 

Dr Tae Chung, Assistant Professor of Physical Medicine and Rehabilitation at John Hopkins Medicine, has said: ‘The autonomic nervous system regulates functions we don’t consciously control, such as heart rate, blood pressure, sweating and body temperature. Malfunction in any of these areas can produce symptoms that can be shared by numerous conditions. Doctors who are not familiar with POTS may dismiss these symptoms as lingering effects of COVID-19 — or even psychological symptoms. At the same time, POTS can be very debilitating and requires specific treatment, so an accurate diagnosis is vital.’

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