• Diagnostic criteria for postural orthostatic tachycardia syndrome
  All of the following criteria must be met:

• Sustained heart rate increase of ≥ 30 beats/min (or ≥ 40 beats/min if patient is aged 12–19 yr) within 10 minutes of upright posture.

• Absence of significant orthostatic hypotension (magnitude of blood pressure drop ≥ 20/10 mm Hg).

• Very frequent symptoms of orthostatic intolerance that are worse while upright, with rapid improvement upon return to a supine position. Symptoms vary between individuals, but often include lightheadedness, palpitations, tremulousness, generalized weakness, blurred vision and fatigue.

• Symptom duration ≥ 3 months.

• Absence of other conditions that could explain sinus tachycardia (Box 3).

The orthostatic tachycardia must occur in the absence of classical orthostatic hypotension, but transient initial orthostatic hypotension10 does not preclude a diagnosis of POTS.5 The patient’s heart rate should rise by at least 30 beats/min (or ≥ 40 beats/min if patient is aged 12–19 yr) in at least 2 measurements taken at least 1 minute apart (Box 2). The Canadian Cardiovascular Society statement5 set a minimum supine heart rate of 60 beats/min to prevent the diagnosis of POTS being made in a patient with a low resting heart rate that increases to a normal level on standing.

It is physiologically normal for orthostatic tachycardia to vary slightly from day to day and for diurnal variability to exist such that greater orthostatic tachycardia occurs in the morning than later in the day.11 If a clinician has a high suspicion of POTS, but a patient does not meet the criterion for orthostatic tachycardia at their initial evaluation, reassessment at a later date is prudent, preferably in the morning.

EDS COMPLICATIONS AND TREATMENT CONSIDERATIONS

Obtain my information packet by emailing golderwilson@gmail.com

You have contacted me to request information on Ehlers-Danlos syndrome (EDS) and related connective tissue laxity disorders. This packet contains 1) history, 2) natural-family history, and 3) physical examination forms for your self-assessment followed by 4) summary of finding frequencies in my EDS patients, 5) general information on how clinical and DNA findings in EDS fit together, and 6) a sample summary letter that for a fee of $100  I could write for you to take to your doctors as discussed below. Those who request a summary letter, have severe impact from EDS as indicated on the lower part of the history form, and have interest in social security disability, I can refer to a specialist although there is no guarantee you would qualify.

The history and physical forms list common findings that were noted in 946 EDS outpatient evaluations and converted into standard forms I used on a subsequent 710 outpatients (596 females and 114 males). You can see the full results in the article: Clinical analysis supports articulo-autonomic dysplasia (reference 1 in the attached information) that includes the summary of finding frequencies attached here. In essence I found that people with more than 10 history and 8 physical findings had EDS by traditional criteria and that women have higher scores than men (more than accounted for by 3 extra points for questions regarding gynecologic issues). Most findings of patients with hypermobile hEDS (more flexibility complications like subluxations, dislocations, and deformations like scoliosis and flat feet) versus those with classical EDS (more atypical cigarette-paper or keloid scars, less hypermobility complications) are similar, the reason I emphasize recognition of a general EDS clinical pattern before considering specific types. 

An Information Service for EDS and related disorders

What does the service consist of?

After 40 years of academic and private practice encompassing over 27,000 new medical genetic evaluations, I am changing my genetics practice to an information service that will be backed by continued article and book publication. I stopped in-person clinics in 2018 due to my own arthritis issues and now will provide information including standardized history and physical forms that will allow people to assess their probability of having an EDS diagnosis. Patients can send in their forms for my interpretation and I will provide a packet with a summary letter that they can take to their doctors to obtain appropriate diagnoses of EDS and dysautonomia. I will provide the information free of charge but ask payment of $100 to provide the summary letter and information packet. I no longer have the resources to coordinate DNA testing but the $100 fee will include my interpretation of DNA testing provided with the history-physical information or sent to me afterwords. For patients with large numbers of history-physical findings on my standard forms and who additionally register significant difficulties with work, school, and activity functions on my physical form, I also offer referral to a specialist in social security disability who can help them with an application; there is of course no guarantee that the specialist or court will approve their application.
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The next page has a description of the information service that describes options for the summary letter and possible referral for disability consideration. If you are interested in receiving the described information package you should email me at golderwilson@gmail.com and I will forward it to you with the introductory letter, medical history/natural-family history/physical forms along with a table of these finding frequencies in 710 EDS patients, discussion of how EDS clinical and DNA findings correlate, an overview of preventive management and therapy for EDS, and an example of my summary letter. The latter table, correlation discussion, overview of therapy, and summary letter example are shown on later pages of this website.

Educational Materials
Dysautonomia International has prepared the following educational materials which you can print out and use to help raise awareness.

Dysautonomia In General

• 10 Facts About Dysautonomia
• What Is Dysautonomia? - two page flyer
• What is Dysautonomia? Newly Diagnosed Patient Brochure
• Diagram of the Autonomic Nervous System - If reproducing this image, please including the following credit to Dr. Aaron Vinik: Copyright (c) 2012 Vinik.
• Principles of Autonomic Medicine - This 709 page book was written by autonomic neurologist Dr. David Goldstein from the National Institutes of Health. It covers all forms of dysautonomia, testing, treatment and more.

POTS

• 10 Facts About POTS Flyer
• Summary of Postural Orthostatic Tachycardia Syndrome - four page summary with detailed information, including citations to peer-reviewed literature.
• Invisible Illness/POTS School Presentation Slides - created by a student living with POTS, Breanne Camberlin, these slides can be used or modified by students for use in school presentations introducing classmates and teachers to the concept of "invisible illness" and POTS.
• POTS Symptom Form - a two sided form that can be used to list symptoms and other important info for ER or office visits. This form also explains the basics of POTS for the doctor and explains where they can obtain more information.
• POTS Medical Accommodation Wallet Card
• Exercise Guide for Dysautonomia Patients

Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.

Vagus Nerve Acupuncture for Dysautonomia / POTS Relief
The Vagus nerve point is one of the most potent acupuncture points to use when treating people who have the challenge of managing dysautonomia and is therefore included in our acupuncture POTS protocol. The Vagus nerve is the longest, cranial “wandering” nerve that covers the heart and innervates most major organs, impacting the cardiovascular, endocrine, immune, respiratory, and digestive systems. The Vagus nerve also impacts the parasympathetic and sympathetic nervous systems.