What is dysautonomia?
Dysautonomia is an umbrella term for health conditions related to the autonomic nervous system. The term "autonomic" means ”self-governing,” which means it controls things you don't have to think about. This covers a wide range of bodily functions, such as breathing, digestion, heart rate, blood pressure, body temperature, sweating and much more.
Some of the most common forms include POTS, orthostatic hypotension, vasovagal syncope and autonomic dysreflexia.
What causes dysautonomia?
There are several possible causes of autonomic dysfunction; these can be divided into primary and secondary causes. Examples of primary causes are genetic or degenerative illnesses, while secondary causes could be injury, infection, or environmental factors.
While some people with a form of dysautonomia can trace their illness to a single cause, often it can be the culmination of multiple factors.
Getting a Diagnosis
Dysautonomia can be a challenge to diagnose, with many symptoms that may appear unrelated at first. A diagnosis normally comes when your doctor has ruled out other illnesses.
Another challenge is the lack of awareness of the illness, even in the medical field, so finding a specialist can be useful if you need a faster diagnosis.
Tests
Tilt table test
A tilt table test is the most common, and normally the final, test they use when diagnosing POTS and many other forms of dysautonomia. Healthcare providers monitor your vitals while the table you’re on tilts at various angles. This allows them to find out why you faint and how your blood pressure and heart rate are affected by a change of positions.
Electrocardiogram
Because a typical EKG tracks your heart’s electrical activity for a very short time, it probably won’t pick up irregularities that only happen once in a while. It’s like when your internet is acting up but seems fine when someone comes to repair it. To capture erratic symptoms, your provider can give you:
Holter monitor: You wear this device for 24 to 48 hours to get a continuous recording of your heart’s electrical activity for that time frame.
Event monitor: You wear this device for a week or more and may need to click a button to start recording when you feel symptoms.
Blood Tests
Doctors will use blood tests to test for antibodies that indicate an autoimmune disorder or levels of certain neurotransmitters like catecholamines; these can help diagnose dysautonomia while also ruling out other illnesses.
Symptom specific tests
While getting my diagnosis, I also had a lung function test, physical stress test, x-rays, and ultrasounds. Depending on your symptoms, your doctor will use a variety of tests to rule out other possible causes.
How long does it take?
The diagnostic journey for dysautonomia can be long, complicated, and frustrating. The delay in diagnosis and misdiagnosis often occurs because symptoms overlap with other conditions. This is why finding a specialist can be useful, saving time, and getting you treatment sooner.
In December of 2013, Dysautonomia International conducted a survey of over 700 POTS patients and found that only 25% of patients are diagnosed within the first year of symptoms.
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