The dysautonomias are a family of conditions characterized by an imbalance in the autonomic nervous system. Symptoms are often extremely variable from person to person, and over time in the same person, and may consist of various pains, fatigue, weakness, gastrointestinal symptoms, dizziness and syncope (passing out). Despite the fact that dysautonomia can be quite disabling, the symptoms are usually far out of proportion to any objective physical or laboratory findings.
This can make diagnosing dysautonomia quite a challenge.
All too often when patients complain of symptoms without providing the objective medical findings (tests and scans) that confirms a problem, 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. Once a doctor focuses on the possibility, taking a careful medical history and performing a careful physical exam often leads to the correct diagnosis. If your doctor is unwilling to take the possibility of dysautonomia seriously, consider seeing another doctor. Once take seriously 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 specific diagnosis they are ultimately given depends on their predominant symptoms and which specialist they end up seeing.
For example,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.
Possibly 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 well understood, treatment is largely aimed at controlling symptoms, and not at “curing” the problem.
Physical 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.
A 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 such as Florinef help 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 such as Advil and Aleve can help control the pains associated with the dysautonomias, especially fibromyalgia.
Treatment a trial and error approach, requiring the patience of both doctor and patient, is almost always necessary in treating dysautonomia. In the meantime, people with dysautonomia can try to reassure themselves by remembering two facts:
- Dysautonomia usually improves as time goes by.
- 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 create treatments.