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Dysautonomia

Patients with dysautonomia benefit from a unique collaboration between TIRR Memorial Hermann and the pediatric neurology and pediatric cardiology services at Children’s Memorial Hermann Hospital. Working together, the two institutions have developed a program that provides a complete continuum of care for children and adolescents with dysautonomia.

What is Dysautonomia?

Dysautonomia is a term describing a number of conditions affecting the autonomic nervous system (ANS) that can cause impairments to multiple body systems, including neurologic, cardiovascular, gastrointestinal and musculoskeletal. The ANS controls the "automatic" functions of the body, such as heart rate, blood pressure, digestion, breathing, pupil dilation, kidney function and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition and in severe cases, death.

Dysautonomia is not rare. According to Dysautonomia International, over 70 million people worldwide live with various forms of dysautonomia.

What are the symptoms of dysautonomia?

Patients with dysautonomia may experience many different symptoms, often making diagnosis difficult. Symptoms may include:

  • Fatigue
  • Brain fog
  • Memory problems
  • Poor concentration
  • Tachycardia
  • Headaches
  • Gastrointestinal problems
  • Weakness
  • Musculoskeletal pain
  • Anxiety/ Depression
  • Sleep disturbances
  • Dizziness
  • Syncope
  • Heat intolerance

How is dysautonomia diagnosed?

Given the wide range of symptoms, patients with dysautonomia often see several specialists before receiving a conclusive diagnosis. It is common for dysautonomia patients to be misdiagnosed with psychological disorders. Patients often complain of overwhelming fatigue, nausea, pain in the shoulders, back and legs, and tingling in their hands and feet, as the body tries to compensate for lack of oxygenated blood and shuts down blood flow to muscles and non-vital organs.

A tilt table test is considered the gold standard for diagnosis of the disorder. Patients are strapped to the tilt table lying flat, then tilted upright to about 70 degrees. The 30-minute test is considered positive if the patient experiences symptoms associated with a drop in blood pressure, such as fainting or cardiac arrhythmia.

What are the types of dysautonomia?

According to Dysautonomia International, there are many forms of dysautonomia. Two of the more common types are summarized below.

Neurocardiogenic syncope (NCS) is the most common form of dysautonomia, impacting tens of millions of individuals worldwide. The major symptom is fainting, or syncope, ranging from mild (fainting spells once or twice in a lifetime) to severe (fainting several times per day, which can lead to falls, broken bones or even traumatic brain injury). Patients with severe NCS may have difficulty engaging in work, school or social activities.

Postural orthostatic tachycardia syndrome (POTS) is a condition in which a change from the supine (horizontal) position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Additional symptoms can include lightheadedness, fainting, chest pains, shortness of breath, GI upset, shaking, exercise intolerance and temperature sensitivity. POTS is estimated to affect about 1 percent of all teenagers, or a total of 1 million to 3 million American teens, and is about five times more common in females than males.

How is dysautonomia treated?

While there is currently no cure for dysautonomia, symptoms can be managed through rehabilitation.

What are the benefits of rehabilitation for dysautonomia?

The Dysautonomia Rehabilitation Program at TIRR Memorial Hermann maximizes patient outcomes by providing:

  • • An integrated, collaborative approach by our interdisciplinary team that addresses the medical, physical, functional, social and emotional needs of the patient for optimal independence
  • A comprehensive evaluation of the patient's rehabilitation potential and customized, individualized programs to address a wide range of symptoms
  • Evidence-based interventions through effective and innovative individual and group therapy sessions to achieve the highest possible functional level
  • Individualized and multidimensional cognitive rehabilitation interventions to address cognitive changes associated with dysautonomia, also known as "Brain Fog”
  • Support groups and counseling for patients and families
  • Facilities and various types of equipment designed and tailored to meet the needs of individuals with dysautonomia
  • A Return to School program designed to assist patients with a safe and successful return to school for those who are currently limited in ability to attend a full day of school
  • Discharge planning which can consist of a group exercise program designed for patients with dysautonomia

Meet the Team

TIRR Memorial Hermann Inpatient Rehabilitation and Memorial Hermann Outpatient have interdisciplinary teams dedicated to the rehabilitation of patients with dysautonomia. These teams include:

  • An integrated, collaborative approach by our interdisciplinary team that addresses the medical, physical, functional, social and emotional needs of the patient for optimal independence
  • Physical therapists
  • Speech language pathologists
  • Occupational therapists
  • Clinical social workers
  • Neuropsychologists

Research

Memorial Hermann Is dedicated to improving patient outcomes through the exploration of new treatments and therapies for patients with dysautonomia. Several research projects are either underway or have recently been completed at Children’s Memorial Hermann Hospital and McGovern Medical School, on topics such as the role of histamine and mast cells in dysautonomia, cerebrospinal fluid neurotransmitters, immunomodulation treatment protocols and DNA studies utilizing whole exome analysis of families.

Support Groups

Young Adult Dysautonomia Support Group (high school & college)
2nd and 4th Saturdays of the month
12:30pm - doors open
Meeting from 1:00 p.m. - 2:00 p.m.
TIRR Memorial Hermann Outpatient Rehabilitation at the Kirby Glen Center
2455 S. Braeswood
Houston, TX 77030
Contact dysauto.group.medcenter@gmail.com for more information.

Young Adult Dysautonomia Support Group (high school & college)
First Monday of the month
6 p.m. - doors open
Meeting from 5:00 p.m. - 6:30 p.m.
TIRR Memorial Hermann-The Woodlands Outpatient Rehabilitation
920 Medical Plaza Drive, Suite 270
The Woodlands, TX 77380
(713) 897-2450

*Please note that these support groups are led by community volunteers. Please contact the group leaders before attending a meeting to be sure there are no schedule changes.

Additional Resources

Dysautonomia Exercise Program
TIRR Memorial Hermann offers a community-based dysautonomia exercise program for patients ages 10-21 that includes both circuit training and aquatic therapy sessions. Aquatic therapy is held on Mondays at TIRR Memorial Hermann-Memorial City, and circuit training is held Tuesdays and Thursdays at TIRR Memorial Hermann-Kirby Glen. Read more >>

Mik’s Hidden Hearts Alliance
Support group for teens with dysautonomia and other hidden illness founded by Memorial Hermann – Texas Medical Center and Children’s Memorial Hermann Hospital patient Mikaela “Mik” Aschoff. Visit the site >>

“We are the Voice” Dysautonomia Documentary
Educational video features Memorial Hermann affiliated pediatric cardiologist Mohammed T. Numan, M.D. , co-director of the Dysautonomia Center of Excellence and professor at McGovern Medical School at UTHealth. Watch the video >>

Get Started

To get started, use this form to become a patient or contact us by phone 1 (800) 44-REHAB (73422) , (713) 797-5942 or fax 713.797.5988

Patient Stories

Justin Lamb ThumbEighteen-year-old Justin Lamb is one of several patients to benefit from a unique collaboration between TIRR Memorial Hermann and the pediatric neurology and pediatric cardiology services at Children’s Memorial Hermann Hospital. Read more »

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