HOW IS DYSAUTONOMIA DIAGNOSED?

There are two diagnostic criteria for dysautonomia:

1. Clinical assessment, including a comprehensive medical history and physical exam;
   

2. An Orthostatic Vitals Test and/or other autonomic function tests which provide clinical evidence supporting a diagnosis of an autonomic disorder..
   

HOW IS DYSAUTONOMIA TREATED?

The #1 form of treatment is education.

Learning about dysautonomia as a patient often begins just after diagnosis with how to pronounce, “dysautonomia” (dis-auto-no-mia). And, in most cases it is an ongoing process of putting together bits and pieces of information like a gigantic jigsaw puzzle.

Dysautonomia is unlike the vast majority of other patient conditions, such as diabetes, cardiovascular disease, or appendicitis where:

• the doctor is the expert

• treatment plans are fairly similar, and

• the patient’s main job is to show up for appointments and follow the doctor’s orders.

In dysautonomia, often the local doctor is not an expert in disorders of the autonomic nervous system. Therefore, it is important that patients become well-educated about their condition and work collaboratively with their doctor(s) to develop a meaningful treatment plan. The goal for most dysautonomia patients is not necessarily to return to full health, but to learn how to gradually have more good days than bad.

Since there is no known cause for primary, or idiopathic, dysautonomia, treatment is generally aimed at symptom management. If the dysautonomia is secondary to a known primary condition, a combined approach should be used including improvement of the primary condition and management of symptoms. The more complex the case, the greater the need for patients and persistence in trialing various treatment options to find the most helpful combination.

PREPARING FOR YOUR FIRST DOCTOR'S APPOINTMENT

Be prepared with information – become knowledgeable and learn all you can. Read our book.

Take a book to give to your doctor.

Keep a log of symptoms and when they are experienced and under what conditions (i.e. I began to stand up at 8am and noticed X. I was exercising and noticed Y. I ate X and noticed Y. Document what you eat and drink when, when you feel symptoms, etc. This history will be helpful in determining patterns and dysregulations.

Gather medical records from previous appointments/tests.

Have a list of all medications and supplements you take.

Watch the Orthostatic vitals video on the TDP website. Download the ortho vitals forms and the patient history forms from the TDP website to give to the doctor. Using the patient history forms as a guide, create your own separate set of notes that answers these questions (or print a second copy of the forms to complete on your own). This will help you think through and summarize your symptoms and history, so you have the most thorough information to share with the doctor.

Prepare a list of questions to ask the doctor – here are a few we have found helpful.

a. Do you have any patients with dysautonomia?
b. What experience have you had diagnosing dysautonomia?
c. Are you aware of any current research?
d. Do you do orthostatic vitals? Do have a tilt table? If not, to whom can you refer me for a tilt table test?
e. What labs should I be asking for – autoimmune markers? Vitamin deficiencies?
f. Do you know specialists who are familiar with dysautonomia?

Ask for the first appointment in the morning, first appointment right after lunch, or last appointment of the day. The first appointments often mean less waiting time in the lobby, and the last appointment might make it easier for the doctor to take more time with you.

Be prepared that this might be a long appt; bring salty snacks and fluids. Bring a light jacket.

Get to know the office staff and strive to build a good relationship with them, too.

Recognize that healthcare professionals have limited time and show appreciation if they spend extra time with you.

Have a trusted and supportive family member or friend go with you.