The problem of evaluating dysautonomia

The severity of the symptoms in people with dysautonomia are typically far out of proportion to any objective physical or laboratory findings (especially when the doctors don't know which findings to look for.) This lack of objective findings makes life very difficult. In modern medical practice, grounded as it is in the gathering and interpretation of objective data, when patients have the audacity to complain of symptoms without providing the objective medical findings to back them up, they are often written off as being hysterical.

Patients lucky enough to be taken seriously by their family doctors are likely to be referred to a specialist. The type of specialist they are sent to usually depends on the predominant symptom they are experiencing, or on the symptom that most impresses the family doctor. And the diagnosis they are ultimately given depends on their predominant symptoms and which specialist they end up seeing. Thus: Those whose main complaint is easy fatigability are likely to be diagnosed with CFS. Those who pass out are labelled as vasovagal or neurocardiogenic syncope. Those whose resting pulses are noticeably high are said to have IST. If dizziness on standing up is the chief problem, POTS is the diagnosis. Diarrhea or abdominal pain buys you irritable bowel syndrome. Pain elsewhere ends up being fibromyalgia. Whatever the diagnosis, however, a dysfunctional autonomic nervous system almost always plays a major part in causing the symptoms.

And whatever the symptoms and whatever the diagnosis, all these syndromes are real, honest-to-goodness physiologic (as opposed to psychologic) disorders – probably variants of the same general disorder of the autonomic nervous system – and while they can make anybody crazy, they are not caused by craziness.

What causes dysautonomia?

Dysautonomia (and all of the above syndromes) are caused by many different things, and do not have one, single, universal cause. It seems clear that some patients inherit the propensity to develop the dysautonomia syndromes, since variations of dysautonomia often run in families. Viral illnesses can trigger a dysautonomia syndrome. So can exposure to chemicals. (Gulf War Syndrome is, in effect, dysautonomia – low blood pressure, tachycardia, fatigue and other symptoms – that, government denials aside, appears to have been triggered by exposure to toxins.) Dysautonomia can result after various types of trauma, especially trauma to the head and chest. (It has been reported to occur after breast implant surgery.) Dysautonomias caused by viral infections, toxic exposures, or trauma often have a rather sudden onset. Chronic fatigue syndrome, for instance, most classically begins following a typical viral-like illness (sore throat, fever, muscle aches, etc.,) but any of the dysautonomia syndromes can have a similar onset.

What becomes of people with dysautonomia?

Fortunately, the prognosis appears far better than it was in the days when the disorder was called neurasthenia. This is likely because bed rest is no longer considered the treatment of choice. Most victims of dysautonomia eventually find that their symptoms either go away or abate to the point that they are able to lead nearly normal lives. Sometimes, in fact, the probability that things will ultimately improve on their own may be the only thing to keep some of these individuals going.

But whether the symptoms eventually improve or not, many victims of dysautonomia experience symptoms that completely disrupt their lives, and the search for competent medical assistance in rendering their symptoms tolerable is all too often a difficult one.