P.O.T.S. (Postural Orthostatic Tachycardia Syndrome)
This disorder can vary from mild to an extreme, causing it to be disabling. It is the autonomic nervous system which controls such things as our blood pressure, heart rate and breathing. When it malfunctions, the cause can be feeling faint or dizzy.
Typically, the autonomic nervous system regulates our blood vessels so that while we are standing the blood does not rush to our legs, making us feel faint or dizzy. An effect of P.O.T.S. when standing too quickly, is dizziness and even the possibility of passing out. When the blood is not flowing properly to the brain, it also causes our heart to beat much faster. Symptoms of P.O.T.S. can include:
Feeling your heart race (also called heart palpitations)
Feeling unstable or off balance (as if you will fall)
Light-headedness (which can be described as feeling you are about to pass out – your vision tunnels and goes gray or dark)
Dizziness and/or passing out
Fatigue
Chest pains
Trouble breathing or catching your breath
Cold or even painful extremities
Pain
Nausea
Red or purple coloring at the lower legs
Shaking (and possibly twitches)
Problems exercising
Headaches or migraines
Sweating (or feeling as if you are having hot-flashes)
Trouble concentrating or confusion
Insomnia
Weakness
Petit mal seizures (an ‘absence seizure’ which causes you to blank out or stare out into space for a very brief period, typically a few seconds).
Although most symptoms occur when standing or changing to a standing position, these symptoms can occur at any time. When laying down, a flat position could also cause any combination of symptoms at varying levels. Sleeping with your head elevated is very helpful.
Causes? The verdict is still out on this one and continued studies are still ongoing. The majority of theory is that it can be caused through viral infection or injury such as brain trauma.
A disorder or “syndrome” is typically a medical condition which does not usually hold straight forward answers or treatments. A syndrome is usually a condition which needs to be managed, since there is no real cure. There are treatments and centers which may help some people, but they can be expensive, and I personally cannot vouch for its treatments or anything close to a cure, as I have never been too one. Looking up this option may be a good idea for anyone with P.O.T.S. who may want the assistance.
Each of us who have been diagnosed with this syndrome and live with it, have our own stories and varying degrees of the symptoms. For myself, I have been managing it since the age of nine and am 51 now. A few years ago the symptoms had increased, so managing the condition meant re-adjusting everything in my life. My daily routines, my diet, exercises and work all needed adjusting again. Finding what works, adjusting to the changes and learning what you can do and have a hard time at – at any point of time the symptoms change can be frustrating and hard. For me, it has been more trial and error and research than doctors and tests. The doctors don’t always have the answers or at least may not have all of them and the tests don’t always cooperate. For example, I had worn the electrodes attached to a hip pack via many wires and gauze hat for a week. The results gave the doctors very little answers. The symptoms don’t occur on demand, nor do they disappear on demand. The purpose of the test was more specific, and the results weren’t everything the doctors were looking for.
When I was first diagnosed, I had already been living with P.O.T.S. for most of my life. When it first occurred, the doctors had not yet understood what it was and so could not give it a name. It wasn’t until 1982 this syndrome was given a name. Managing it was simply a part of my life without knowing what it was called or any real answers past its cause being from a brain trauma and neurological. I admit fully to being more than extremely stubborn and found ways to live my life the way I choose; being active, working and hobbies. Through the right diet, routines, remedies and exercises I am able to manage my condition and continue to live my life regardless of it.