This is a great article to share with family and friends (as well as co-workers, colleagues, or anyone you’d like to inform) to help them understand what it is like to live with Dysautonomia. Formerly titled Dysautonomia Information For Loved Ones, this article was originally posted on a POTS support group. I asked permission to share it here…I have revised it and added to it over time, so it does vary greatly from Erika’s original post. I thank the original poster for her hard work and fantastic input, which formed the core of this article. I will continue to add to it and revise it, so you may want to check back occasionally here at http://www.ZebraSoup.me for those revisions. Your suggestions and input are very helpful…simply leave a comment below this article. Feel free to share it. I include a PDF version you can download here (last revision 3 May 2014).
HELPING YOUR FAMILY & FRIENDS UNDERSTAND DYSAUTONOMIA
Living with Dysautonomia is hard. So is living with someone who has it. Each brings unique challenges, and understanding what Dysautonomia really is and how it affects the body is crucial. The following is a patient’s perspective on Dysautonomia, compiled using both medical research as well as input from many other Dysautonomia patients. The information is meant to make coping with the impact of Dysautonomia easier, not only on the sufferer, but also on family and friends who are also vastly affected by the fallout of the systemic tornado that is Dysautonomia.
What is Dysautonomia:
There are several types (and sub-types) of Dysautonomia. I have two types:
- POTS (Postural Orthostatic Tachycardia Syndrome; my sub-type is hyperMCA POTS, which is a rare subset of the hyper POTS sub-type)
- NCS/NMH (Neurocardiogenic Syncope, also called Neurally Mediated Hypotension, as well as a few other variations that all refer to the same thing)
Further information on various types of Dysautonomia are available at www.dinet.org
If you think you might have Dysautonomia, I have posted an easy home screening ‘test’ for this; all you need is a blood pressure cuff/monitor and pen/paper (ideally, print and use the sheet provided to record your readings at the specified intervals/positions). The instructions and sheet are posted under “Tilt This” at http://www.ZebraSoup.me (this blog).
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, digestion, 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 the hallmark characteristic of the condition POTS (Postural Orthostatic Tachycardia Syndrome), which is a type of Dysautonomia. To “qualify” as POTS, a patient must exhibit symptoms of pre-syncope (symptoms that typically precede actual fainting/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).
I jokingly say, “I can run a marathon standing still,” which is what it is actually like for my body when I do stand still, comparatively speaking. This is a hard concept for others to grasp, especially when they see no visible effects and I “look just fine” to them.
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 – 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 aware and provides a boost in 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 nervous 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 corresponding pulse pressure) back to normal, constricts pupils, improves circulation, enhances digestion, calms us down, contracts the bladder and puts us into a state of rest and relaxation. It conserves energy and is often referred to as the breaks 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 together 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 my increase and 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 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 “fight or flight” 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 or autonomic nervous system dysfunction. The actual causes can vary greatly, and can even be stacked; for example, I have at least seven distinct known ’causes’ of/contributors to my Dysautonomia. My list of diagnosis is here, if you are curious (and bored).
What is it like to live with Dysautonomia?
Symptoms are widely variable, in both presentation and intensity. It is different for each person, and also varies greatly for each person suffers from Dysautonomia. We will exhibit a varying degree of symptoms within each day. Our symptoms may change dramatically over time, as well. Things like environment, stress, weather, diet, etc., will effect us greatly. Symptoms often include the following (more in-depth list farther on):
- Sweating Abnormalities
- Swollen nodules/lymph nodes
- Syncope/Fainting/near syncope
- Tachycardia (rapid heart rate)
- Taste & appetite changes. Fruits & other acidic foods may taste extremely acidic. Foods may taste different if patient is tired, stressed, or post-syncopal episode.
- Trouble Breathing
- Generalized Weakness and/or weakness in legs
- Weight gain (or loss) regardless of diet modifications
- White appearance of fingers – Some present with white patches of skin on arms and legs. Often have the appearance of blotchy like skin. (Vitiligo, Raynaud’s, nerve damage and other issues may also contribute to this)
Symptoms of Dysautonomia In-Depth
The quantity and severity of symptoms varies from day to day.
** Not all POTS or NCS/NMH patients have all of these symptoms; while some may have most, others may have fewer. Also, according to most current research, only about 25% of POTS patients actually faint/pass out.
I am one of the lucky few who does pass out and experiences most of the following symptoms. Each person will have a unique experience, and it can vary greatly day by day, or even hour by hour or minute by minute. **
These symptoms have an impact that reaches beyond the patient experience; they can affect lifestyle, of course, but they also deeply impact all manner of interactions in our lives. That may keen the inability to plan activities (you don’t know what your body will be doing in five minutes, let alone five days). They even affect everyday conversations, much more than even most patients realize. For example, things like attentiveness (or lack thereof, to be more precise), brain fog, mood swings…all these can leave a footprint way beyond the patient. How others interpret and perceive is is very dependent on our words and deeds, and Dysautonomia is very invasive in these areas; it impacts everything we do and say, and changes faster than the weather and far more unpredictably. The result can easily lead to misunderstandings, even arguments; hurt feelings, abandonment issues, and everything from anxiety to depression are just a few of the potential side effects of Dysautonomia…and not just for the patient. I believe that understanding the mechanisms of how Dysautonomia works and how it affects us, and like ripples in a pond, those around us (which is often bounced back at us in ways that make the Dysautonomia and it’s symptoms worse, resulting in a terrible escalating cycle) is the best key to mitigating the negative impact on everyone involved. It is still challenging, to put it in positive light, but the more we do to minimize misunderstandings and the stress they cause, the better off we all are.