My journey with PoTS
This seemed like the perfect fit since summer has officially begun in the UK !
What is PoTS ?
PoTS stands for Postural orthostatic Tachycardia Syndrome and is a part of Autonomic Dysfunction.
It is caused by an abnormal response by the autonomic nervous system and is characterised by the development of symptoms when upright that get better after laying down (orthostatic intolerance). (PoTS UK website)
This can cause abnormal increase in heart rate, dizziness, fainting, blood pooling in legs/feet, orthostatic headaches and more.
My symptoms :
Blood pooling in legs causing discolouration (purple, blue black)
No/very little blurry vision when lightheaded
The summer time for PoTS patients can be difficult as the heat can make our symptoms a lot worse.
I first fainted at the age of 11 during a cooking class on children in need day at school. Overtime i started fainting more, had body temperature problems, pooling in my feet and tachycardia, and my GP was useless so i did not really receive any proper help.
When my overall symptoms/conditions started getting worse, i did my own research and found PoTS/autonomic dysfunction and HEDS to be a possibility for me, which is what i presented to the first private doctor i met. I was sent to another 2 specialists and they all agreed i have PoTS, which is when i was sent to a autonomic specialist. He then did all necessary tests including a tilt table test and the results confirmed i have PoTS, autonomic mediated syncope, orthostatic intolerance which is all the dysfunction of the autonomic nervous system.
Since then, I have been put on different medications which unfortunately have not worked as well, alongside this i was given non pharmaceutical options to try for management purposes. After 3 years, last year, i re did my autonomic testing under a new specialist (as my old one retired) And this time my results were worse. It is still an ongoing journey as i also have many other conditions which makes management for 1 tricky.
Electrolyte tablets (especially in the summer !!) - I use ORS tablets which work great for me, but there are other brand such as NUUN which have been recommended to Me. https://amzn.to/3z9fYxo
Compression tights - I use the Scholl compression tights which ares super helpful when walking and standing for long periods of time https://amzn.to/2T4Im3v
Salt ! Lots and lots of salt. I even carry little salt packets around for emergencies
Cold drinks and cool environments/using fans - basically avoid getting hot at all costs
Water water and more water - I drink at least 3 litres if not more. Hydration is key
A shower chair since standing in the shower means a lot of blood pooling and easily lightheaded
I hope everyone out there who feel lost, feel a little less alone, and the undiagnosed finally get some answers. It can be a long journey but you will get there!
Take care this summer to all my fellow potsies!!