Now that I’ve talked about why Dysautonomia Awareness Month is so important, let’s get into what exactly this condition is…
Dysautonomia literally means a dysfunction of the autonomic nervous system. The autonomic nervous system controls all of the functions in your body that you do not have to think about, such as: heart rate, blood pressure, breathing, blinking, digestion, temperature regulation, etc. The autonomic nervous system (ANS) controls most of the systems in your body, so when it malfunctions it can do so in a large variety of very unpleasant ways.
Dysautonomia is an umbrella term, which covers any malfunction of the ANS. There are some specified conditions that fit under the dysautonomia umbrella, where the ANS malfunctions in such a way as to cause semi-predictable circumstances/symptoms. That is to say, if you have symptoms XYZ then you will be diagnosed with condition A. However, some people with dysautonomia do not fit a specific set of symptoms and thus have an “undiagnosed dysautonomia” (or they get misdiagnosed).
As I mentioned in my kickoff post, dysautonomia is not rare! There are more than 70 million people living with some form of dysautonomia worldwide, which is more people than the entire population of the UK! (Actually, more than the UK and Ireland combined because they still don’t hit 70 million!)
Some Dysautonomia Types
The two most common forms of dysautonomia are postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (NCS). (I will link each conditions’ page from Dysautonomia International at the end of the description.) To see a more complete list of different dysautonomia types, and to get more in depth with each one, please go to Dysautonomia International’s “Other Forms of Dysautonomia” page.
Postural Orthostatic Tachycardia Syndrome (POTS)
POTS is one of the most common forms of dysautonomia, with estimates saying that 1 out of every 100 teenagers will develop POTS in their lifetime. Including adults, that is an estimated one the three million Americans!
The diagnostic criteria for POTS is an increase in heart rate of 30 beats per minute (or more) within ten minutes of standing, or a heart rate over 120 beats per minute while standing. To determine the heart rate, a doctor will usually do a tilt table test, where the patient is strapped to a table and tilted to a standing position and their heart rate (and blood pressure) are monitored.
While many patients with POTS experience orthostatic hypotension (low blood pressure upon standing) and may faint/pass out, neither of these things are necessary for a POTS a diagnosis. The condition literally just means that your heart rate gets inappropriately high when you are standing still. (People without POTS see little to no increase in heart rate when moving from laying down to standing.) In fact, some people with POTS can have no change in blood pressure or even high blood pressure upon standing! (High blood pressure upon standing is orthostatic hypertension.)
Depending on the severity of POTS, the quality of life has been likened to patients with COPD or kidney failure requiring dialysis.
Learn more: Postural Orthostatic Tachycardia Syndrome
(I also posted a good video from Dysautonomia International last year: watch here.)
Neurocardiogenic Syncope (NCS)
Syncope is the medical term for fainting / passing out – it means a “temporary loss of conciousness” (from Google).
Neurocardiogenic syncope may also be referred to as neurally mediated syncope (NMS), which is the most recent medical term for the condition, or neurally mediated hypotension (NMH). These three condition names are all referring to the same condition.
In NCS, the person with the condition stands, experiences bradycardia and/or hypotension, then either experiences pre-syncope or full syncope. Pre-syncope is similar to the type of lightheaded-ness you experience if you stand up way to fast – except people with dysautonomia usually pass out if they do not sit or lay down quickly upon experiencing it. The hypotension is usually caused by blood pooling in the extremities – usually the legs and feet – and not circulating back up to the heart and brain.
NCS can range in severity from one to two fainting episodes (full syncope) in a lifetime, to several episodes in one day. The more severe cases can cause serious long-term problems for an individual, especially if they are hitting their head or breaking bones when they faint.
Learn more: Neurocardiogenic Syncope
Multiple System Atrophy (MSA)
Thankfully, MSA is considered to be a rare disorder, with only about 350,000 patients worldwide. I say thankfully, because this condition is fatal.
MSA occurs in adults age 40 and over, and kills the majority of those with the condition within 5-10 years of diagnosis. Almost everyone with the condition will be bedridden within two years of diagnosis.
Symptoms of MSA can be similar to Parkinson’s, but the condition causes nerve damage that is more widespread than the damage caused in Parkinson’s. In fact, MSA and Parkinson’s are two out of three types of primary autonomic failure, with the third being pure autonomic failure (PAF). In MSA, the nerve damage spreads throughout the body, causing a loss of control/function in all of the major systems of the body.
Learn more: Multiple System Atrophy
Thankfully, the majority of dysautonomia types are not fatal, at least not by themselves. However, this does not mean they do not cause a dramatic change in the person’s lifestyle. Imagine having knowing that every other time you stood up, you might faint; how often would you be standing up? If standing still literally made you feel like you ran a marathon, what would you do in your day? (If you ran a marathon daily, would you be able to do anything else?)
Even when a condition is not fatal, it can dramatically impact life and cause dramatic changes in the way you are forced to live your life. This is why it’s so important that we work together to find cures for these conditions!
Donate to help find a cure: here.
Information for this article comes from Dysautonomia International! They are a fantastic source for information about dysautonomia!!!!