In Daisy’s final blog about the rare disease, Ehlers-Danlos Syndrome, she informs us about Postural Orthostatic Tachycardia Syndrome, a comorbidity.
Many people with Ehlers-Danlos syndrome have Postural Orthostatic Tachycardia Syndrome, commonly referred to as POTS. It is a comorbidity of EDS and one of the many conditions that I have.
POTS is a condition relating to the autonomic nervous system and is characterised by an abnormal increase in heart rate that occurs with change of posture. Sometimes people also have a drop in blood pressure. I always explain it as when you get out of bed a bit too quickly and get a bit dizzy, that’s what it feels like but worse and it happens every time you stand up or even going from lying to sitting.
Many people get palpitations, chest pain, dizziness, shaking and syncope with the condition and it can have a significant impact on your quality of life. Other people have more mild symptoms and can manage it well.
POTS is diagnosed with a tilt table test, although many cardiologists will run ECGs and echocardiograms to exclude other conditions first. In a tilt table test you are strapped to a table, with a heart monitor on and you get moved into different positions whilst they monitor your heart rate and blood pressure. It can be a difficult procedure as if you do have POTS you can get very symptomatic but the nurses are very good and the test can be ended early if you are too uncomfortable or feeling too unwell. When I had my first tilt test, I had to end mine early, but the second one I managed to push through.
In terms of treatment, there are some medications that can help regulate blood pressure and heart rate, and some lifestyle changes that can help. Drinking more water can often help with symptoms as it helps to decrease heart rate. A high salt diet can also help as it increases circulatory blood volume, which in turn lowers heart rate and increases blood pressure. It is important to acknowledge that certain lifestyle changes may be harmful so it’s vital to check with your doctors before implementing any of these strategies.
This is the last blog in the EDS series; I am really pleased I have been able to spread awareness of my rare disease, and I hope that you have found the blogs interesting and that you have learned something too!