You likely don't know what those jumble of words mean in the title. Despite it not being a rare condition, the majority of people have no idea what it is and a worrying amount of health care professionals have never heard of it which results in seriously delayed diagnoses.
POTS is a syndrome that is caused by disfunction of the autonomic nervous system. (It’s a type of dysautonomia). The autonomic nervous system controls and regulates all unconscious (or automatic) functions of the body. (Autonomic=Automatic. Easy to remember right?) Things like blood vessel dilation and contraction, heart rate, sweating, pupil dilation, digestion- all that good stuff that you never actively think about or control." *
It is considered a chronic and invisible illness, with some sufferers unable to work due to the severity of their symptoms.
The main problem with POTs sufferers is standing. When they stand up, their blood vessels don't constrict to make sure their blood is evenly distributed, most importantly to the brain. The heart rate then increases by 30+ bpm within a few minutes to compensate for the sudden drop in blood pressure (thought not every person with the condition will get a drop in blood pressure). This alone can cause several symptoms such as palpitations and dizziness, but 30% of people will often faint.
If you haven't already guessed, I have POTs. When I stand up, I get lightheaded, dizzy and I often go almost completely blind (tunnel vision). I can feel the blood fall from my head. This has probably happened to many of you when you get up too quick but this is the reality for those with POTs, but several times a day and sometimes for no reason. I've gone blind when I've been standing up and feel fine. This condition almost cost me my driving license and ultimately my job. :O
Aside from the most prominent issue with POTs, seeing as so many functions are controlled by the ANS, it makes sense that POTs comes with a range of symptoms when the ANS has a dysfunction. POTs can cause problems with digestion (people are often misdiagnosed with having Irritable Bowel Syndrome), they get brain fog, difficulty regulating temperature, fatigue and headaches, just to name a few. It can also trigger panic attacks.
It's not entirely understood what causes POTs (though Diabetes and Joint Hypermobility Syndrome, which I have the latter, can cause it) and there's no cure, but it's controlled through lifestyle changes, such as good diet (low in carbs), higher salt intake (increases blood pressure), exercise (it's recommended that it's completed sitting down) and getting good sleep.
Sufferers generally feel unwell, exhausted and under the weather, but they look happy and healthy which can cause frustration when others don't understand them or don't take how they're feeling seriously.
People with POTs have limited energy and they often refer to the spoon theory to explain this, which in short, helps people share out their energy each day. A medical report stated that when a POTs patient stands, it expends energy similar to the amount of energy used by someone running in one spot. If you ran on the spot for an entire day, whilst you did your everyday tasks, you'd be pretty tired! Many people with POTs have insomnia so you can see how it can become debilitating after a while.
There is a real need for this condition to get more awareness as it can take years for people to get a correct diagnosis because there's very few doctors who actually know about it. Some of the symptoms can be easily excused or related to another condition that they actually don't have i.e. irritable bowel syndrome. It causes many to feel frustrated because they know something's wrong but they're not getting anywhere with their doctors. It's also very helpful when the general public know and can be more empathetic to someone having a bad POTs day. :)
Thanks for reading and shout out to the fellow Potsies out there. (y)
Some more reading;
10 Things People With POTs Are Tired of Hearing
Most Helpful Opinions