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Ehlers-Danlos Syndrome and Dysautonomia

Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affect the body’s connective tissues. Leading to joint hypermobility, skin fragility, and other debilitating symptoms. Dysautonomia, a dysfunction of the autonomic nervous system, often co-occurs with EDS. Which can leads to symptomatology also associated with Postural Orthostatic Tachycardia Syndrome (POTS).

Understanding the Connection: Ehlers-Danlos and Dysautonomia

Connective Tissue Link

Abnormalities in the connective tissues caused by EDS can impact the autonomic nervous system. Blood pressure and heart rate are directly affected in the autonomic nervous system. Reasons related may be low blood pressure and an increase in pooling of blood, low circulation blood volume, high levels of histamine. This can lead to dysautonomia and POTS.

Shared Symptoms

Both EDS and dysautonomia often present with symptoms like chronic pain, fatigue, dizziness, and gastrointestinal issues. Symptoms related to Tachycardia (High heart rate) faster than 100 PBM, lightheadedness, palpitations, feelings of faint.

Complexity of Co- Occurrence

The relationship between EDS and dysautonomia is complex, with many potential contributing factors and a need for individualized treatment approaches. It is believed that in people dealing with one, in turn deal with the 3. EDS, Mast Cell, and POTS.
Postural Orthostatic Tachycardia Syndrome (POTS)

Blood Pooling

In POTS, blood pools in the lower body when standing, causing a rapid heart rate increase to compensate.

Dizziness and Fainting

The blood flow imbalance can lead to symptoms like dizziness, lightheadedness, headaches, and even fainting upon standing.

Chronic Condition

POTS is a chronic and complex condition that requires comprehensive management, treatment approaches, and lifestyle adjustments. When working these 3 in a combined effort we see our best results.

Symptoms and Diagnostic Criteria

Joint Hypermobility

Overly flexible and unstable joints that are prone to sprains and dislocations.

Autonomic Dysfunction

Symptoms like heart palpitations, dizziness, nausea, and temperature dysregulation.

Chronic Pain

Widespread musculoskeletal pain, headaches, and gastrointestinal discomfort.

Diagnostic Criteria

Specific clinical criteria, genetic testing, and autonomic function assessments are used to diagnose EDS and dysautonomia. In our patients

Diagnostics

At Hope Brain Center we create a patient specific approach towards diagnosing your health. We have many different diagnostic tools and test that are able to help us assess what you may be dealing with. FOr most POTS patients we see we do the following, some vary upon necessity.

Food Sensitivity test→ We assess your diet first and foremost to ensure we are not recommending supplements that may counter progress. We also do this test to make aware of the foods that you will need to stay away from due to high inflammation biomarkers.

CAPS Balance Assessment→ CAPS is a balance test designed to show vestibular imbalance in directional pathways. Example: If you look left with your eyes closed you may be more likely to stumble than if you were looking right with eyes closed. CAPS is a state of the art balance test for which we gage how your kinetic chain is functioning with your vestibular system.

ANS Autonomic Nervous System Assessment→ ANS is a complex 40 page report that is generated based off of your, you guessed it.. Autonomic Nervous system. Here’s what it measures

Some of the Treatments

Oxygen Training at High Altitude → Here patients will be exercising on bike while linked to SPO2 monitor and 100% oxygen machine. We then put a patient into a state of hypoxia where they will not receive oxygen and rely on their own reserved oxygen in the body. Dependent upon patient these times vary. NExt step is to flood the body with that 100% oxygen and measure for how long it take the body to recovery back to a high oxygen state. Learn more

Neurofeedback → Our state of the art neurofeedback technology has capabilities of retraining the brain, building plasticity and creating new neural connections. We have recently added new technology that allows for deeper penetration to the thalamus, medulla oblongata etc. View points in a 3D perspective allows us to target exact points to view a real 3D grid of the brain in real time training. Learn more here and here.

Challenges in Managing Ehlers- Danlos and Dysautonomia

Limited Awareness

EDS and dysautonomia are often overlooked or misunderstood by healthcare providers, leading to delayed diagnoses and inappropriate treatments. In POTS / Dysautonomia the misdiagnoses is found to be panic attack or anxiety disorders. IN EDS often Misdiagnosed as fibromyalgia, chronic fatigue syndrome or depression.

Multisystem Involvement

The complex, multifaceted nature of these conditions requires a comprehensive, multidisciplinary approach to care. The presence of one of these (POTS, EDS, or Mast Cell) than there is likely more than one present. In many cases today people are dealing with all 3.

Lack of Consensus

Ongoing research and debate surrounding the best management strategies for EDS and dysautonomia can make treatment decisions challenging.

Individualized Needs

Each patient's presentation and response to interventions can vary, necessitating personalized and adaptable treatment plans. This is a main component of what separates us from the rest. We test according to individual needs, and we create a comprehensive treatment program to start building back the brain and body in unison.

Lifestyle Modifications and Supportive Treatments

Exercise

Low-impact, gentle exercises can help improve joint stability and manage symptoms. Yoga and low weight strength training can assist in forming new connective tissue to rebuild and get stronger in the affected area.

Nutrition

A balanced diet rich in nutrients can support connective tissue health and energy levels. Eating the right things may often help to decrease full Body → Brain inflammation.

Functional Neurology

Specialized brain-based adjusting can help address joint, muscle, and movement challenges. Aside from all the other treatments and state of the art technology we have to offer.

Hope Brain Center Leads the way with Comprehensive Functional Neurology Model

Finding Specialists, Hope Brain Center

Locating experienced EDS and dysautonomia clinicians can be challenging but crucial. The Hope Brain Center team has had tons of success and high rates of quality of life improvement %.

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