[Kealie Mardell | Media Coordinator]
In 2012 I suffered from bilateral pulmonary emboli (blood clots on your lungs). A course of blood thinners and some lifestyle management tips and I was back on my feet six months later. Yet being on my feet was causing chest pain and shortness of breath. These symptoms are very similar to those which I experienced with the blood clots, and knowing that I’m likely to clot again, there have been many over-cautious trips to the hospital when things have got unbearable.
Fast forward to the present day – I’ve continued life as normal, knowing that any kind of exertion (walking, climbing stairs, heavy lifting, and sometimes just standing up) could cause pain and breathlessness. I’ve had blood tests, heart monitors, ECGs and scans galore, ruling out a wide array of conditions which can cause the same symptoms. Yet now, after an extremely long wait, a cardiologist sent me for a tilt table test. Strapped to a table and tipped into an upright position, my heart rate jumped, and a jump of over 30 BPM is the marker of POTS.
Postural orthostatic tachycardia syndrome
With this new diagnosis and explanation for the symptoms that have plagued me for the last three years, I took it upon myself to do some research. On finding that POTS can affect up to 1 in every 100 teenagers alone it seemed like this research should be shared with you as well.
What is POTS?
POTS is a problem with the body’s autonomic nervous system, part of a range of conditions which can be classified as dysautonomia. These include things like Chronic Fatigue Syndrome, ME, and Fibromyalgia, which I’ve also been diagnosed with in the past.
In people with POTS, their bodies don’t react correctly to gravity. While most people adjust to the change when standing up automatically, in order to maintain blood supply to the heart and brain, POTS patients don’t have this same automatic response. This causes the heart rate to jump, leaving some people with chest pain and breathlessness. Many feel dizzy or lightheaded, and for some, even fainting.
What are the symptoms of POTS?
Alongside the reactions when standing, POTS can also cause many other debilitating symptoms, and it’s these that often lead it to be misdiagnosed, as they cross over with other conditions. The symptoms of POTS include:
Is there a cure?
Unfortunately, there is currently no known cause or cure for POTS, but many people can continue to live a normal life with the condition. It’s thought that two of the possible causes are viral infection or trauma. In my case, the trauma to my lungs is most likely what caused the onset of POTS.
POTS is also often found in those with Joint Hypermobility Syndrome, and it’s suspected that there is a connection between the two conditions. Because of this, I’m now also being investigated for ehlers-danlos syndrome, but more on that later.
There are some medications that have been found to ease symptoms, but none are licensed for the treatment of POTS. In some patients, beta-blockers, midodrine or fludrocortisone have helped, but treatment is something to be decided in consultation with your specialist and varies from patient to patient.
What can you do to help?
If you suffer from POTS there are some lifestyle changes you can make to help ease the severity of your symptoms. These include:
Increasing your salt intake
Keeping your head raised in bed
Avoiding standing for long periods of time
Wearing compression clothing
Coming up slowly from lying or sitting down
Although I’ve only been recently diagnosed, I’ve been battling with these symptoms for a long time. My best advice would be to listen to your body. If something is making your symptoms worse, then stop doing it. Don’t ignore the warning signals that your body is sending you. The most important thing is to take care of your physical and mental wellbeing, especially when you’re living with an invisible illness like POTS.
If you think you could be suffering from POTS or any form of dysautonomia speak to your GP. You can also find more information from POTS UK.
All images by Hannah Ensor/stickmancommunications.co.uk