Diagnosing DysautonomiaDiagnosing dysautonomia is a stumbling block for many physicians. People with dysautonomia often have severe symptoms that are far out of proportion to any objective physical or laboratory findings. This can make the diagnosis quite difficult. In modern medical practice, 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.
If you think you may have dysautonomia, by all means suggest that possibility to your doctor. You may just see a light bulb going off, and find that your doctor is suddenly refocusing his/her efforts in a more fruitful direction.
Patients lucky enough to be taken seriously by their family doctors are likely to be referred to a specialist. The type of specialist 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.
For instance: Those whose main complaint is easy fatigability are likely to be diagnosed with chronic fatigue syndrome. Those who pass out are labeled as vasovagal syncope. Those whose resting pulses are noticeably high are said to have inappropriate sinus tachycardia. If dizziness on standing up is the chief problem, postural orthostatic tachycardia syndrome (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.
By all means, keep in mind that the dysautonomia syndromes are real, honest-to-goodness physiologic (as opposed to psychologic) disorders. While they can make anybody crazy, they are not caused by craziness.
Treating DysautonomiaPossibly the most important step in treating dysautonomia is to find a physician who understands the nature of the problem, is sympathetic toward it (i.e., does not consider you merely a crazy person), and who is willing to take the prolonged trial-and-error approach that is often necessary in reducing symptoms to a tolerable level.
Since the underlying cause of dysautonomia is not known, treatment is largely aimed at controlling symptoms, and not at "curing" the problem.
Non-drug therapiesPhysical activity: Maintaining an adequate daily level of physical activity is probably the most important thing people with dysautonomia can do. Regular physical activity helps to stabilize the autonomic nervous system, and in the long run makes "relapses" of symptoms more rare and of shorter duration. Physical activity may even hasten the day when symptoms go away on their own.
Physical therapy and similar "alternative" treatments such as yoga, tai-chi, massage therapy, and stretching therapy have been reported to help as well.
Dietary supplements: Any time a medical condition exists that doctors treat poorly, purveyors of dietary supplements have an open field for pushing their products. Not only do patients feel they may have no better alternative, but also the medical profession, embarrassed by its failure to treat effectively, has little grounds for complaint. Consequently, thousands of unsubstantiated claims have been made about the ability of various vitamins, coenzymes and herbal preparations to relieve various forms of dysautonomia. As a member of the embarrassed medical establishment, I can only say, it's your money; try not to spend it on anything that will hurt you. Before you try any alternative therapy, you ought to read all the objective information on it you can find.
Drug therapiesA host of pharmaceutical agents have been tried in patients with dysautonomia. Those most commonly felt to be useful include:
Tricyclic antidepressants - such as Elavil, Norpramin, and Pamelor - have been used, in low dosage, to treat several of the dysautonomia syndromes. Selective serotonin reuptake inhibitors (SSRIs) - such as Prozac, Zoloft, and Paxil - have also been used to treat these syndromes. When effective, the tricyclics and the SSRIs appear to do more than merely control any depression that might accompany the dysautonomias. There is some evidence that they might help to "re-balance" the autonomic nervous systems in some patients.
Anti-anxiety drugs - such as Xanax and Ativan help to control symptoms of anxiety, especially in patients with panic disorder.
Anti-low blood pressure drugs - Florinef helps prevent the symptoms caused when the blood pressure drops when the patient is upright (a condition called orthostatic hypotension), a prominent symptom in in vasovagal syncope and in POTS.
Non-steroidal antiinflammatory drugs - Drugs such as Advil and Aleve can help control the pains associated with the dysautonomias, especially fibromyalgia.
It is worth mentioning again that a trial and error approach, requiring the patience of both doctor and patient, is almost always necessary in treating dysautonomia. In the meantime, victims of dysautonomia can try to reassure themselves by remembering two facts. First, dysautonomia usually improves as time goes by. Second, the academic medical community (and pharmaceutical companies) have now accepted that the dysautonomia syndromes are real, physiological medical conditions. Consequently, a lot of research is going on to define the precise causes and mechanisms of these conditions, and to devise treatments that are effective more often and to a greater extent than many of the treatments being used today.
Tell us about your dysautonomia.The dysautonomia syndromes can be tough to diagnose, tough to treat, and tough to live with. If you have one of the dysautonomias, your experience might be very helpful to others. So tell us how you have coped.
Click on the link (under "Readers Respond," below) to participate.
Furlan R, Barbic F, Casella F, et al.Neural autonomic control in orthostatic intolerance.Respir Physiol Neurobiol. 2009 Oct;169 Suppl 1:S17-20.
Staud R. Autonomic dysfunction in fibromyalgia syndrome: postural orthostatic tachycardia. Curr Rheumatol Rep. 2008 Dec;10(6):463-6.