So You Have POTS disease? This Might Interest You.
POTS patients are rarely understood, even from the so called medical experts, and POTS is a form of Dysautonomia. It gets a little complicated at first, but can be decoded with a little patience. It might be wise to do a little research, before you size down someone with a disease that you do not fully understand.
The POTS disease is difficult to describe to friends and family, and much harder to a complete stranger that is totally unaware of the symptoms. These types of diseases are known typically as ‘silent diseases’ and are many times swept under the rug.
Many patients suffer from the awful symptoms and from the opacity dealt from the public. The transparency just isn’t there, so the ones that are trapped in this debilitating nightmare receive little fanfare from family, doctors, the government, or even the spouse.
Many feel trapped and some commit suicide; with the pain and misunderstanding far too overwhelming. In this case, a patient decides to clarify the medical terminology, and while doing so gets an apology from her doctors and nurses. She gave them a lesson in respect!
There are several types and sub-types of Dysautonomia.
I have two types:
Dysautonomia is a malfunctioning of the Autonomic Nervous System, which controls the unconscious bodily functions, in other words, all those functions we don’t think about to perform.
This includes your heart rate, digestion, breathing blood pressure, pulse pressure, heartbeat, bladder function and narrowing or widening of the blood vessels, body temperature, sweating, bowel function and sleep patterns, among others.
Dysautonomia can also be referred to as Autonomic Neuropathy. Think of it this way—Dysautonomia can interrupt the inner workings of the human body, sort of like a car that is mechanically sound but has wiring issues—and looks new!
A patient with Dysautonomia is sometimes bedridden for varying periods of time; often we are housebound due to the effects of this condition, whether bedridden or not, or forced to lay down often because when we stand up, our brain fails to send the correct signals to the heart to pump blood to the brain.
This can result in a significant drop in blood pressure upon standing, along with an increase in heart rate, because our heart is forced to beat overtime to get blood back up to the brain so we don’t faint (we sometimes call this a ‘face plant’, although the correct term is ‘syncope’—by the way, most Dysautonomia patients never actually pass out, according to research which indicates that only about a quarter of patients actually experience syncope—
I am one of those who does pass out.
For example, when I stand up and remain standing still, my heart rate typically reaches between 120 and 165 beats per minute within five minutes, without even having taken a few steps yet (my heart rate actually drops when I begin to move).
This is often a target heart rate for someone that has been running on a treadmill for over 25 minutes!
This dramatic climb of heart rate (tachycardia) upon standing is a hallmark characteristic of the condition POTS (Postural Orthostatic Tachycardia Syndrome), which is a type of Dysautonomia.
To “qualify” POTS, a patient must exhibit symptoms of pre-syncope, (symptoms that typically precede actual fainting or passing out) in addition to a rise of 30 beats per minute in heart rate. Some use 25 beats as the standard; most use 30 beats.
The autonomic nervous system, also known as the involuntary nervous system, regulates those facets in the body that occur automatically, such as breathing.
It is composed of two branches—the parasympathetic nervous system and the sympathetic nervous system. There is actually a third branch, but for the sake of simplicity, I’ll discuss the primary branches as associated with Dysautonomia Sympathetic.
Dysautonomia Sympathetic
The sympathetic nervous system is also known as our stress response system, or the “fight or flight” system. It is set into motion when we experience stress.
It increases our heart rate and blood pressure (as well as pulse pressure), dilates pupils, restricts circulation, slows down digestion, relaxes the bladder, makes us more alert, and provides a boost of energy so that we are capable of dealing with the stressful situation effectively.
It increases energy and is often referred to as the accelerator of the autonomic system. (See also: COMT gene.)
Parasympathetic
The job of the parasympathetic nervous system is the exact opposite. Once the stressful event is over, it brings the heart rate and blood pressure ( as well as the corresponding pulse pressure) back to normal, constricts pupils, improves circulation, enhances digestion, calms us down, contracts the bladder and puts us in a state of rest and relaxation.
It conserves energy and is often referred to as the brakes of the autonomic nervous system. Since the Sympathetic is the “fight or flight” side, think of the Parasympathetic as the “chillax” side of things.
What Causes Dysautonomia Symptoms?
When the autonomic nervous system is functioning as it should, the sympathetic nervous system and the parasympathetic nervous system work in perfect harmony together to maintain balance in the body.
The sympathetic nervous system provides us with the tools we need to respond to stress adequately, and the parasympathetic nervous system restores us to our normal state of peace and tranquility.Those of us with this condition find ourselves stuck in “fight or flight” mode; we yearn for the “chillax” mode.
Dysautonomia, or autonomic nervous system dysfunction, occurs when these two systems fail to work in harmony.
The most common scenario is: the sympathetic nervous system remains dominant most of the time and the parasympathetic never turns on. When this occurs, then, the body remains in a state of fight or flight at all times.The intensity will vary, but it stays switched on.
This variation is responsible for the wide variations in both symptoms we experience, as well as the severity, which fluctuates a lot. A whole lot. The stress response system never fully turns off, but may increase or decrease.
If the body remains in a state of fight or flight at all times, then many degenerative processes begin to happen and result in a variety of chronic health conditions and overall effects on our health like those in the list farther down, because the fight or flight side is only supposed to be on for limited times.
It is only supposed to be used for brief emergencies, or when our bodies need that extra boost adrenaline provides.
The stress response system was designed to deal with brief emergencies that threaten survival. It isn’t supposed to last very long because the body cannot sustain itself for very long in this state, at least not without significant effects.
The natural and preferred state of the mind and body is the parasympathetic state, because it is the regenerative. However, it is willing to forgo its preferred parasympathetic state to deal with acute emergencies and will remain in that state if the emergency continues.
If the brain and body remain in the sympathetic state for too long and too often, it is degenerative; it breaks us down. If this cycle continues, then eventually the system burns out.
It is this cycle that results in Dysautonomia. The actual causes can vary greatly and can ever be stacked; for example, Ihave at least 7 distinct known causes of contributors to my Dysautonomia.
