Dysautonomia - The Unusual Diagnosis That's Not All in Your Head

Real Symptoms Require a Real Diagnosis - Learn About Dysautonomia

Dysautonomia is most easily understood by breaking down the word:

  • "Dys" means not working correctly (from the Greek word for bad or malformed)
  • "Autonomia" refers to the body's autonomic nervous system (ANS)

The ANS is the body system that governs anything our bodies do that is automatic and done without thinking about it, like breathing, blinking, heartbeats, muscles tensing and relaxing, digestion, and many others.

The autonomic nervous system is also responsible for our automatic responses to stress and trauma, called "fight or flight" responses, where we either react by fighting against whatever the stressor is, or by running away (taking flight.)

If those two parts of the ANS aren't coordinating well -- such as if the balance between them has been affected by some trauma, either physical, mental or emotional -- then the resulting imbalance is called dysautonomia.

Dysautonomia has been recognized as a disease, disorder, or syndrome since the 1800s when it was called neurasthenia, and applied mostly to women. Because doctors at the time could not find a physical reason for the symptoms, they were thought to be caused by psychological triggers, meaning "all in your head."

The symptoms described at that time, and still recognized today, include pain, numbness, weakness, anxiety and fainting (syncope), dizziness and loss of balance, heart palpitations, tachycardia, clammy hands or feet, hyperventilating, and sometimes profuse sweating.

Depression might also ensue (perhaps caused by this list of difficult-to-cope-with symptoms). One patient with dysautonomia may exhibit one, or more, or all of these symptoms.

Today these symptoms, together in a group described as dysautonomia, are ascribed to both women and men.

What Causes Dysautonomia?

There doesn't seem to be a one-size-fits-all answer to a cause for dysautonomia.

However, in most cases, it seems that anything that causes trauma, in the broadest sense, may be a trigger. It could be psychological trauma like the loss of a job, being the victim of a crime, or service as a soldier in a war zone (thus a resulting PTSD diagnosis -- see below). Or it could be a physical trauma, ranging from a terrible car accident to a long-term infection or viral illness, to surgery or chemical poisoning.

Other potential causes of dysautonomia include:

  • Ehlers-Danlos Syndrome
  • Mitochondrial diseases
  • Spinal cord injury (autonomic dysreflexia)
  • Brain injury
  • Guillain-Barre syndrome
  • Marfan Syndrome
  • Autoimmune diseases

There is also a form of familial dysautonomia, called Riley-Day syndrome, a rare genetic disorder that has many of the same physical manifestations, but is not caused by any form of trauma to the body or the mind.

How Is Dysautonomia Diagnosed?

Diagnosis of dysautonomia is uncommon because, with the exception of familial dysautonomia, most doctors do not regard it as a disease or condition itself.

There are no tests that result in such a diagnosis, and because the symptoms are common to so many other diagnoses, dysautonomia rarely even comes to mind for most doctors.

In fact, because so many of those symptoms are so difficult to identify through testing or observation, "it's all in your head" is the verdict too many patients hear.

Those diagnosticians who do recognize these constellations of symptoms may not give them the name of dysautonomia. Instead they will opt to diagnose with one of the following (if they provide any diagnosis at all):

Some diseases are thought to cause dysautonomia, such as diabetes or alcoholism. The later stages of Lyme Disease may also be in that category.

The existence of diagnosis codes for doctors to use in gaining their reimbursements for the work with you is some evidence that doctors should be taking dysautonomia more seriously as a diagnosis itself. One reason diagnostic codes are assigned to a "new" diagnosis is to give them the credibility they need when they deserve it. (Codes are not developed for trashcan diagnoses or diagnoses that aren't real.)

In fact, if your doctor is willing to look at the diagnosis with you, or even if you just need it as evidence of the possibility, you can share the diagnosis codes with him or her:

Treatment and Prognosis of Dysautonomia

Because dysautonomia is a description of symptoms, the possibility for effective treatment, and therefore the prognosis, are dependent on what toll those symptoms take. In some cases, the dysautonomia is completely reversible and therefore "cured." In others, the disease will continue to take its toll and death will result.

Learn more about dysautonomia treatment and prognosis from the NIH and from Dr. Rich Fogoros, the About.com Guide to Heart Disease.

You, Your Doctor and Dysautonomia

Because the diagnosis, or even the recognition of dysautonomia is so difficult, it is also rare, and isn't often even suggested by doctors. Therefore, if you believe you are exhibiting the symptoms, you may need to be the one who raises the possibility yourself.

Begin by discussing it with your primary care doctor. He or she may refer you to a specialist. If you need to try several doctors before you get one to discuss dysautonomia as a possibility for you, then it may be worth it.

Your pursuit should not be for that specific diagnosis. Your pursuit should be an intelligent discussion of the possibilities. The idea isn't for you to be right; it's for your health to improve, and your best chance for that will be collaborative discussion and shared decision-making with your doctor.

Sources:

NIH Neurological Disorders and Stroke (includes a master list of dysautonomia organizations)

Basics of the ANS from the University of Washington

The National Dysautonomia Research Foundation

Familial Dysautonomia Foundation (Riley-Day Syndrome)

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