Dysautonomia & Neurology in EDS/HSD

Dysautonomia or autonomic dysfunction, is a broad term for issues caused by a dysfunction of the autonomic nervous system. It is one of many manifestations of neurological conditions 

This page is dedicated to dysautonomia and neurological manifestations of EDS and symptomatic hypermobility.

Autonomic Dysfunction (Dysautonomia) by Dr. Alan Hakim

A brief overview of autonomic dysfunction from a multi-system perspective.

Pain Management in Ehlers-Danlos Syndromes with Dr. Pradeep Chopra

Understanding the VITAL connection between pain, dysautonomia and mast cell activation in EDS. Even in those who do not test positive. See Gastro & Mast Cell Resources!

 Dysautonomia & Proprioception

POTS, Postural Orthostatic Tachycardia Syndrome, is the most frequently diagnosed form in adults, but signs of generalized autonomic dysfunction often begin early in childhood. For some individuals their dysautonomia creates chemical issues in the brain which specialized testing must diagnose. The syndrome itself, however, is caused by neurological dysfunction. This connection likely explains the multi-system issues patients present with: muscle contractures (dystonie), proprioception issues, and mast cell instability.  Some researchers have also suspected that dysautonomia is closely related to the eventual diagnosis of autoimmune small fiber neuropathy  (Dr. Iweala, UNC, 2019).

Neurological Manifestations

Other neurological manifestations in EDS and hypermobile spectrum disorders tend to be symptomatic in ways that appear to require a different specialty than neurology. Chiari malformation, for example, can compress the pituitary gland, impairing hormone function. Dystonias, recognized by researchers in Europe to impact over 40% of hEDS patients, are very common and can begin in childhood. The muscle contractures feel like deep stiffness and soreness, only mildly responsive to acupuncture or massage with symptoms returning within hours, or it creates inflammation in the joints that can point towards a rheumatological condition.

Video: Dr. Petra Klinge “Managing Life with Neurological Symptoms”

Ehlers-Danlos and the Connections between proprioception, dystonia and dysautonomia. 

Dystonia and its treatment in Ehlers-Danlos Syndrome by Claude Hamonet et al.

Muscle Contraction Impairing Joint Mobility in Ehlers-Danlos, and it’s impact on Beighton Scoring.

Autonomic Dysfunction in Hypermobile EDS non-academic

Autonomic Dysfunction in Hypermobile EDS – academic

Neurological Manifestations in Ehlers-Danlos Syndromes

A recent study by neurosurgeon and EDS specialist Dr. Petra Klinge, et al. recently published a study demonstrating that laxity in the ligaments of the neck likely exist in ALL EDS patients, causing abnormal spinal cord movement which triggers pain and headages in patients, regardless of MRI findings. This is an incredibly important step in establishing diagnoses as CO-conditions for hypermobility spectrum patients, that can be assumed upon initial diagnoses. Such pathogenic evidence decreases the time and effort for obtaining treatment, and increases the likelihood of correct treatment. An abstract can be read here.



Disclaimer: The information contained on this site and the supporting attachments provided by Rachel Lee Patient Advocacy Consulting are for educational purposes only. Although we have performed extensive research regarding medical conditions, treatments, diagnoses, protocols and medical research, the staff of Rachel Lee Patient Advocacy Consulting are not licensed members of the North Carolina Medical Board or any clinical affiliates including but not limited to the NC Board of Physical Therapy Examiners, the NC board of Licensed Professional Counselors, or the NC board of Dietetics/Nutrition. Information provided by members of Rachel Lee Patient Advocacy Consulting should not be considered a substitute for the advice of a licensed medical doctor, counselor, therapist or other licensed clinical practitioner in handling your medical affairs.