October is Dysautonomia Awareness Month. What is Dysautonomia (can also be called Autonomic Dysfunction) you might be asking?? If you look it up you can find all kinds of information. According to Dysautonomia International, dysautonomia is a very broad term that causes a some sort of malfunction of the Autonomic Nervous System(ANS). Let me pause here and explain what what the AND does so you can have a better idea of what problems could arise. The ANS Controls the body functions that would be considered “automatic.” So things we can’t actually control ourself. Things like our heart rate, blood pressure, digestion of food, constriction and dilation of the pupils, kidney function, and our body temperature. Anyone who has Dysautonomia may have trouble regulating the above. So their blood pressure and heart rate may fluctuate and could potentially cause fainting, lightheaded, malnutrition or even death.
If I were to ask 10 people if they heard of Dysautonomia, I would guess it would be less than 5. That being said Dysautonomia is far from rare. It is said that over 70 MILLION people world wide live with this in some form. This condition is not gender or race specific. Anyone of any race, gender or age can be impacted. Sadly, like many conditions that we apoonies have there is no cure. However, research is being funded to research and hopefully develop new and better treatments, and hopefully someday a cure. Sadly even though so many people are impacted by this condition, just like many spoonie conditions, it may take years to be diagnosed. Simply because of lack of awareness not only among the public but also within the medical profession
Dysautonomia will generally involves failure of the sympathetic or parasympathetic systems. Causing excessive or even overactive ANS actions. Dysautonomia can be localized leading to reflex sympathetic dystrophy. Or more ge realized, causing pure autonomic failure. It can also be acute in action and therefore reversible , like Guillain- Barre. Or progressive and chronic like diabetes and alcoholism. Being that it’s a very complicated condition it can also happen as a primary condition, or along side with degenerative neurological conditions like Parkinson’s. Predominant signs of dysautonomia caused by sympathetic failure are impotence in men, and a drop in blood pressure when standing!! On the other hand if the patient is experiencing excessive sympathetic activity may have or show high blood pressure and:or a fast heart rate!! Primary dysautonomia is usually inherited or due to some sore of a degenerative disease, while secondary dysautonomias usually results from another condition or injury.
So we’ve talked about who can be effected by Dysautonomia/Autonomic Dysfunction acute vs chronic conditions. And what those conditions might look like. Now let’s look at signs and symptoms.
Autonomic Dysfunction have the potential to affect only a small part of the ANS or the entire ANS. Symptoms may vary depending on how much of the ANS is affected and if there are any nerve disorders.
Generic Signs and symptoms of Dysautonomia: dizziness and fainting upon standing up, (aka orthostatic hypotension), an inability to alter heart rate with exercise, or exercise intolerance. sweating abnormalities, which could alternate between sweating too much and not sweating enough, digestive difficulties, such as a loss of appetite, bloating, diarrhea, constipation, or difficulty swallowing, urinary problems, such as difficulty starting urination, incontinence, and incomplete emptying of the bladder, sexual problems in men, such as difficulty with ejaculation or maintaining an erection, sexual problems in women, such as vaginal dryness or difficulty having an orgasm, loss of vision problems, such as blurry vision or an inability of the pupils to react to light quickly.
Anyone can experience any or all or none of these symptoms depending on what the cause. Symptoms such as tremor or muscle weakness may occur due to certain types of autonomic dysfunction.
There are three main types of Dysautonomia:
Neuro Cardiogenic Syncope (NCS) is the most common kind of dysautonomia. It is estimated that tens of MILLIONS of people are affected worldwide. The main symptoms a person with this condition might feel would be: fainting (or syncope), which may happen once or it could be happening frequent enough that it would interfere with a persons daily life!
Naturally gravity will pull blood downward but a healthy ANS adjusts the heartbeat and muscle tightness to prevent blood from pooling in the feet and legs and makes sure blood flow returns to the brain. Most treatments are aimed to reduce symptoms.
For people who faint they should avoid the following triggers.
-dehydration, stress, alcohol, very warm areas, tight clothes.
Meds like beta blockers and pacemakers are often used to treat people with severe NCS.
Postural OrthostaticTachycardia Syndrome: This conditions is also known as POTS and affects between 1 and 3 million people in the US alone. Approximately 80% of those 1-3 million are female. IT COMMONLY AFFECTS PEOPLE WHO ALSO HAVE AN AUTOIMMUNE CONDITION!!!!!
Symptoms can include:
lightheadedness and fainting, tachycardia, or abnormally fast heart rate, chest pains, shortness of breath, stomach upset, shaking, becoming easily exhausted by exercise, over-sensitivity to temperatures
POTS is usually a secondary dysautonomia. Research has found high levels of auto-immune markers in people with the condition, and generally patients with POTS are also more likely than the general population to have an autoimmune disorder, such as multiple sclerosis (MS) or lupus!
Apart from people who have POTs having auto-immune factors, other conditions that have been linked to POTS or POTS-like symptoms include: some genetic disorders or abnormalities, diabetes, Ehlers-Danlos Syndrome, a collagen protein disorder than can lead to joint hypermobility and “stretchy” veins, infections such as Epstein-Barr virus, Lyme disease, extra-pulmonary mycoplasma pneumonia, and hepatitis C, toxicity from alcoholism, chemotherapy, and heavy metal poisoning, trauma, pregnancy, or surgery
Research for the causes of POTS is continuous . Some scientists believe it might be due to a genetic mutation, while others think it is an autoimmune disorder.
Lastly, (for the purpose of this post)
Multiple system atrophy- Multiple system atrophy (MSA) is less common than POTS and NCS. One of the big difference in this conditions and the others discussed is that It is more likely around the age of 55 years. Even though it is less common MSA is estimated to affect between 2 and 5 people in every 100,000. It is oftenhard to diagnose because it is often mistaken for Parkinson’s disease because the early symptoms are similar. In the brains of people with MSA, causes certain regions slowly break down, in particular the areas of the cerebellum, basal ganglia, and brain stem. The break down in those areas leads to motor difficulties, speech issues, balance problems, poor blood pressure, and problems with bladder control.
MSA has not been found to be hereditary or contagious, and it is not related to MS. Researchers know very very little about what may cause MSA. As a result of not knowing the cause, there is no cure and no treatment to its slow progression. Treatment can, however, manage specific symptoms through lifestyle changes and medications.
As you can see Dysautonomia is very complicated and can impact many parts of the body from the heart to the brain. While some of the conditions that fall under this umbrella are well known with good treatment options. Others, mainly MSA is very unknown and there is no cure or treatment. Especially important to us is the research of POTS as is directly related to autoimmune like lupus. And many people with Lupus end up having POTS. Like many other conditions we need to do more research and find good treatment options for all these conditions!!