Postural Orthostatic Tachycardia Syndrome (POTS) commonly occurs secondary to EDS, and for me, it was something I had symptoms of prior to my EDS diagnosis but at the time didn’t know what to put them down to.
POTS is a form of dysautonomia, a disorder of the autonomic nervous system; this means functions which are normally controlled with no conscious input are no longer carried out as they should be. This results in abnormal blood pressure and heart rate, inability to control body temperature, breathing pattern disorders, gastroparesis and numerous other problems.
When I transition from sitting to standing my heart rate and blood pressure do not adjust accordingly and I faint. Naturally, with the nature of EDS, this results in dislocations so is a bit of a vicious cycle. I also am hot the majority of the time regardless of the weather, and have a breathing pattern disorder which has led me to needing ongoing respiratory physio. I also suffer headaches, ‘brain fog’, tiredness and poor sleep as a result of this condition.
80% of people with Ehlers-Danlos Syndrome also suffer with POTS, and so these are conditions that occur commonly together. There is no ‘cure’ for POTS, and it can be a real challenge to treat particularly when the complications that present with a typical EDS patient are considered.