Identifying Dysautonomia

What is it?

Dysautonomia is not a diagnosis. It is a term used to describe any disorder of the autonomic (automatic) nervous system.

Dysautonomia (Dis-auto-NO-mia) is an umbrella term used to describe any disorder of the autonomic (or automatic) nervous system. The autonomic nervous system is the part of the nervous system that regulates functions that are automatic in nature such as heart rate, blood pressure, digestion, excretion, perspiration, temperature regulation, pupil dilation, circulation, and respiration among others.  The autonomic nervous system is responsible for maintaining homeostasis, or equilibrium,  in the body.  When there is a dysfunction or failure of the autonomic nervous system the result is a disorder classified as a type of dysautonomia.  These disorders can be mild to debilitating, and usually involve abnormal symptoms in many organ systems, including cardiac, gastrointestinal, neurological, and pulmonary, as well as others.

Invisible But Real

Dysautonomia, an invisible illness, may be one of the most misdiagnosed medical conditions of all time. The biggest problem in autonomic medicine today is the lack of knowledge about dysautonomia in communities and especially community-based healthcare professionals. While there is not a cure for dysautonomia, once this condition is diagnosed, symptoms can be managed.  Therefore, it is important to find a local healthcare professional who is educated about dysautonomias or is willing to become educated.

Types of Dysautonomia

There are at least 15 distinct dysautonomias; the most common are postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope.

There are many forms of dysautonomia that can occur at any age: pediatric, adult, and/or geriatric.  These autonomic nervous system disorders usually involve abnormal symptoms in many organs systems including cardiac, gastrointestinal, neurological, pulmonary, as well as others.  Dysautonomias can range from mild to disabling and may or may not be neurodegenerative.  (Since there are many forms of dysautonomia we use the singular term “dysautonomia” to reference autonomic disorders in general or when referring to a specific condition such as “orthostatic hypotension.”  We use “dysautonomias,” plural, when referring to many disorders of the autonomic nervous system.)

Pediatric:  Also known as genetic or hereditary dysautonomias, these conditions often reflect problems or mutations which occur during the development of the autonomic nervous system.  One type of mutation, found almost exclusively in people of Ashkenazi Jewish heritage, affects the autonomic and sensory nervous system development causing familial dysautonomia.  Another mutation causes an increased level of phenylalanine (Phe) in the bloodstream causing a metabolic disorder called phenylketonuria (PKU).  Another mutation in the ATP7A gene that is responsible for transporting copper throughout the body causes  “kinky hair” and is known as Menkes disease.  In Hirschsprung’s disease there is a lack of development of nerve cells in the enteric nervous system.  Other pediatric dysautonomias include:  hereditary sensory and autonomic neuropathy (HSAN), congenital central hypoventilation syndrome (CCHS), and catecholaminergic polymorphic ventricular tachycardia (CPVT).  In general, dysautonomias in early childhood are rare.  

Teen/Adult Onset:  In teens and adults, dysautonomias usually reflect functional changes in a generally intact autonomic nervous system.  Dysautonomias in adults often are associated with, and may be secondary to, another disease process or a drug.  Common secondary causes include medications, chemotherapy, radiation treatments, spinal cord or head injury, or diabetes (such as diabetic autonomic neuropathy).  Less commonly the body’s immune system mistakenly attacks and damages certain parts of the autonomic nervous system in autoimmune autonomic ganglionopathy.

The most common forms of adult onset dysautonomia are:

Autonomically Mediated Syncope Also called vasovagal syncope, neurally mediated syncope or neurocardiogenic syncope, individuals with autonomically mediated syncope suffer from frequent episodes of fainting or near fainting where the blood pressure drops by 20 mmHg systolic/ 10 mmHg diastolic with upright posture.  Most patients have symptoms with little change in heart rate.  In some cases the drop in blood pressure occurs as a compensatory function following tachycardia, as seen in POTS, or bradycardia can precede a drop in blood pressure.  

Postural Orthostatic Tachycardia Syndrome (POTS) POTS is the most common dysautonomia and is characterized by symptoms in multiple organ systems and an abnormal increase in heart rate (30 bpm in adults, 40 bpm in teens) upon standing.  POTS is a common but underrecognized health condition affecting an estimated 1 in 100 teenagers and, in the United States, as many as 3 million adult and teen patients combined.  POTS is a dysfunction of the autonomic nervous system that involves abnormal symptoms in many parts of the body, including abnormal blood flow to the heart, lungs and brain.  It often involves problems with digestion, temperature regulation, and many other involuntary functions of the body.  Because the condition involves the autonomic nervous system, which regulates mostly internal functions, it is commonly known as an “invisible illness.”

Geriatric:  In the elderly, dysautonomia typically reflects a neurodegenerative disease.  The degeneration may be in the form of lesions in the central nervous system, as in multiple system atrophy (MSA), or in loss of autonomic nerves not involving the central nervous system, as in pure autonomic failure (PAF).  Most geriatric cases involve damage to nerves that results in loss of autonomic reflexes, also known as autonomic failure.  It is common in geriatric patients to experience some orthostatic hypotension which is characterized by a drop in blood pressure upon standing.  Neurogenic orthostatic hypotension is a neurodegenerative form of dysautonomia in which the autonomic system loses the ability to properly regulate blood pressure as one moves from sitting or lying down to standing.

Primary, Secondary or Idiopathic?

Regardless of when a dysautonomia occurs in life, these disorders can be primary, secondary, or idiopathic.  A primary dysautonomia is when we know autonomic dysfunction is the main disease process.   Examples of primary dysautonomias include familial dysautonomia, multiple system atrophy, pure autonomic failure, and some forms of syncope among others.  Secondary dysautonomias are experienced as a consequence of another disease process, as in autonomic neuropathy associated with diabetes or POTS as a result of an auto-immune disease.  Idiopathic dysautonomias are autonomic nervous system disorders where the main disease process is unknown.  The pathophysiology of most dysautonomias is complex and not well known therefore it is helpful to discuss with your doctor if your dysautonomia is a primary, secondary, or idiopathic disorder.   

Coexisting Conditions?

Since dysautonomia patients experience many symptoms from multiple organ systems it is helpful to consider the possibility of underlying causes or coexisting conditions.  Here is a sample list of common coexisting conditions associated with dysautonomias.

Coexisting Condition Autonomic Symptoms
Autoimmune Autonomic Ganglionopathy (AAG)
Orthostatic hypotension (OH), gastrointestinal issues, urinary retention.
Autoimmune Encephalopathy
Excessive sweating, labile blood pressure and heart rate.
Celiac Disease
Gastrointestinal issues.
Charcot-Marie-Tooth Disease
Progressive foot drop, imbalance, sensory loss, gait abnormalities, autonomic neuropathy, abnormal heart rhythms, and difficulty breathing.
Chiari Malformation
Neck pain, balance problems, numbness in the arms and legs, ringing in the ears, headache made worse by coughing or straining.
Chronic Regional Pain Syndrome
Constant burning pain, pain that is disproportionate (more than what it should be), one limb that is or has experienced pain and swelling with or without trauma.
Diabetes
Chronic pain in feet, urinary problems, erectile problems in males.
Ehlers-Danlos Syndrome
Hypermobile joints, history of multiple dislocated joints, stretchy skin, very thin skin.
Guillain-Barre Syndrome
Labile blood pressure and heart rate, constipation.
Mast Cell Activation Syndrome
Flushing (dry, hot, red face or upper body), multiple hypersensitivities, hives, anaphylaxis.
Median Arcuate Ligament Syndrome
Pain in the upper middle stomach area after eating, exercising, or shifting body position; bloating.
Paraneoplastic Autonomic Neuropathy
Gastroparesis, orthostatic hypotension.
Parkinson’s Disease
Orthostatic hypotension, sexual dysfunction, swallowing or gastrointestinal disorders, bowel and bladder abnormalities, and sleep disturbance.
Sjogren's Syndrome
Dry eyes and dry mouth, fatigue, orthostatic tachycardia.
Sleep Disorders
Difficulty staying awake, difficulty sleeping, commonly experience unrefreshed sleep.
Systemic Lupus Erythematosus (SLE)
Skin rashes, paresthesias, fatigue.

Fast Facts

  • Postural orthostatic tachycardia syndrome (POTS) affects an estimated 1 out of 100 teens.
  • A simple orthostatic vitals test can help doctors confirm a suspected dysautonomia diagnosis.

Dysautonomia Symptom Checker

The symptoms experienced by dysautonomia patients vary based on the type of autonomic dysfunction and where the dysfunction is occurring within the body.  Since dysautonomias affect multiple organ systems the presentation of symptoms are heterogenous, widely varying between different individuals.  For example, one patient with POTS may have the chief complaint of abdominal pain while the next POTS patient complains most about migraine headaches.  The organ systems most commonly affected in POTS are neurological, pulmonary, cardiovascular, urinary, gastrointestinal, secretomotor and pupillomotor.  One interesting common sign of autonomic dysfunction is the difficulty maintaining upright posture, also known as orthostatic intolerance.

 

  1. Difficulty Standing Still
  2. Fatigue
  3. Lightheadedness
  4. Nausea and Other GI Symptoms
  5. Brain Fog and Mental Clouding
  6. Palpitations or Chest Discomfort
  7. Shortness of Breath or Difficulty Breathing

The following graphic depicts common symptoms and affected organ systems.  Common pupillomotor symptoms include impaired pupil response (uncomfortable in bright light) and impaired vision. Neurological symptoms often include migraine, cognitive deficits, brain fog and mental clouding.  Pulmonary symptoms comprise shortness of breath, easily winded, and difficulty breathing.  Cardiovascular symptoms include palpitations, chest discomfort, high heart rate (tachycardia), low heart rate (bradycardia), high or low blood pressure, abnormal blood pressure functioning, and blood pooling.  Urinary symptoms consist of difficulty with urine retention and/or excretion.  Common gastrointestinal symptoms include nausea, vomiting, diarrhea, constipation, abdominal pain, reflux, heartburn, and impaired motility. Secretomotor symptoms include difficulty sweating, tearning, and other fluid production (dry eyes, dry mouth, difficulty swallowing, dry skin).  Finally, signs of Orthostatic Intolerance involve difficulty standing still, fatigue, lightheadedness, increase in symptoms with upright posture, fainting (syncope) or near-fainting, and pallor.  

In patients with orthostatic intolerance or orthostatic hypotension, standing upright can result in an annoying pain in the back of the neck and shoulders.  Because of the distribution of the discomfort, this is sometimes referred to as the “coat hanger sign” which occurs as pain in the back of the neck when standing.  The exact mechanism of the coat hanger phenomenon is unknown, but one theory suggests it is a kind of cramp caused when the antigravity muscles holding up the head receive too little blood flow.

Angela Hawkins

Vice President

Angela is an imaginative master fundraiser who has served the community for more than three decades as a volunteer. Many millions have been raised benefiting local private schools through her creativity, organizational and management skills which she’s used to mobilize committees and rally donors. In 2019 Angela joined the TDP board and chaired the Under The Umbrella gala - which was her creation. The event was wildly successful, raising more than $500,000, catapulting TDP’s mission to new heights. Angela knows firsthand the hardships dysautonomia patients endure, as her daughter suffered through misdiagnosis for years. Through TDP her daughter found answers, spurring her on to provide the same for the many others searching for information and understanding

Susan Rolston

Susan Rolston has more than 30 years’ experience leading high-performing organizations in public education and the nonprofit sector. For more than a decade, she was the Chief Executive Officer of Big Brothers Big Sisters of Pinellas County. Under her leadership, the organization expanded its donor base, increased its budget through diversified revenues, and ultimately improved the lives of 300% more children. After leading a highly successful merger with Big Brothers Big Sisters of Tampa Bay, she retired in 2014. Post retirement Susan traveled the country conducting agency audits for Big Brothers Big Sisters of America. Prior to her work with Big Brothers Big Sisters, Susan administered the Pinellas County Schools’ community involvement and school-based volunteer programs.

A longtime Pinellas resident, Susan has served in numerous public service and volunteer capacities. In 2015, she was appointed to the Juvenile Welfare Board by Governor Rick Scott and currently serves as Immediate Past Board Chair. She also served on the Board of Directors for the Early Learning Coalition of Pinellas County, Sixth Judicial Circuit Florida Bar Grievance Committee, and United Way Suncoast’s Community Impact Committee. Her most recent leadership appointment is with The Florida Bar’s Citizens Advisory Committee.

Susan’s adult daughter, Jayne took years to confirm a diagnosis of POTS and Mast Cell Activation. Jayne, like Kelly, is married with two teenage children; managing the chronic illness while helping to maintain a quality of life for Jayne’s family is a priority for Susan. After connecting with Kelly for guidance to help her family navigate the challenge of an accurate diagnosis and treatment plan, Susan has remained connected to TDP as a donor.

Al Ruechel

Al Ruechel, a graduate of Iowa State University, is a retired Television News Anchor from Bay News 9 serving the greater Tampa Bay area. He has been reporting and anchoring for more than 50 years, 34 of those years in the Tampa Bay area, interviewing literally thousands of newsmakers, politicians, subject matter experts, and even 6 presidents, and numerous presidential candidates

He has won dozens of anchoring and reporting awards working in Ames, Iowa, St. Louis, Missouri, Fort Myers, Florida, Albany, New York, and Tampa. He’s been awarded the Florida Medical Communicators Award two years in a row as well as 4 Emmy Awards for investigative and live on-air anchoring. He also volunteers at many of the Bay Area social service agencies as well as being on the Worship Team at his local church. He also hosts a bi-weekly interview segment on WPDS with Pinellas County School officials.

Al became involved with TDP through his friendship with Kelly and Nate Freeman. His background in short and long form interviewing made him a natural choice for leading the video discussions on our website.

He’s been married to the love of his life, Jennifer, since 1976. They have four children and 12 grandchildren, so far.

Tanya Baird Repka

Tanya Baird Repka has been active for many years in various community organizations and non-profit groups with a focus on fitness and youth advocacy. Tanya was director and head coach for 9 years of Tampa Bay Fit marathon training program and coached middle school track & field. She Co-Founded the St. Petersburg Road Runners Club in 2006, served as advisor on youth programs for Motion Sports Management, and has experience organizing and directing community, athletic and fundraising events. She is past President of the Osceola High School Athletic Boosters, where she oversaw the Christina Tournant Memorial Scholarship. Tanya has served on the race committee for the POTS Pi Day 5K as a committee member and Chair since 2017. She is the mother of three daughters, one of whom has POTS. She became involved in dysautonomia awareness efforts as a result of her struggle to find a diagnosis and treatment for her daughter. Tanya is a lifelong resident of St. Petersburg and an associate broker and sales consultant at Baird Realty Group, a family-owned full service real estate firm. Tanya studied Marketing and Business Administration at the University of Florida.

Susan Jinks

Susan Jinks is an Associate at Coldwell Banker Real Estate. She has personal experience with dysautonomia patients in her family and among her close friends. Susan joined TDP’s board in 2017. She has been a tremendous asset to TDP for organizing and hosting events and recruiting volunteers through her vast network of community connections.  

Jason Jensen

Jason Jensen, AIA, LEED AP, joined Wannemacher Jensen Architectural Firm in 2002. After gaining experience in New York City, he returned to St. Petersburg with a goal to innovate architecture for this generation in the Tampa Bay area.

Terence M. Igo

Terry Igo joined The Sanibel Captiva Trust Company at its inception in 2001 on Sanibel Island. He was instrumental in growing the initial client asset base, (now more than $2 billion), followed by a successful expansion into Naples and then to the Tampa Bay region in 2010. Since assuming the CEO position in 2013, Terry has grown the Florida footprint to also include Belleair/Clearwater and Tarpon Springs. In addition to directing company-wide operations, Terry serves as a member of the Asset Management Committee, the Risk Management Committee, Strategic Planning, and the Board of Directors.

He has served as advisor to many Florida non-profit organizations, assisting with capital and planned giving campaigns; increasing awareness of philanthropic giving. Terry currently serves on the Straz Center for the Performing Arts Board of Trustees and is a member of the CEO Council of Tampa Bay. He is also past chairman and founder of the Go Red for Men of Tampa Bay – American Heart Association, and a past trustee of Hodges University. He and his family resided on Sanibel-Captiva Islands and Fort Myers for 20 years before relocating to Tampa Bay in 2013.

John Hiers

Reverend John Hiers retired as rector for the Church of the Ascension in 2020. He has served his community as an Episcopal priest for over 40 years. John joined the board of TDP in January 2022 to help the organization connect with key supporters in the community to further TDP’s mission.

June Bryant, DNP, APRN, CPNP-PC

Dr. Bryant is an Assistant Professor at the University of Tampa, Department of Nursing, and a pediatric Nurse Practitioner with over 12 years' experience. She took her expertise on the road in November of 2021 as the owner of Dr. Joonie’s Examinavan. Dr. Bryant trains her nursing students in autonomic disorders from both professional and personal experience, having identified symptoms in her grade-school-age son. She gives educational presentations on behalf of TDP at local, state and national nursing conferences and trainings. She joined TDP’s board of directors in 2020. 

Hunt Brand

Hunt Brand is Chief Operating Officer (COO) for Network People with over 30 years' experience driving technology roadmaps, developing innovative secure systems, managing security, and streamlining operational processes. Hunt served his local community as Commissioner and Mayor of The City of Belleair Bluffs where he repaired relationships, improved partnerships and was known as the voice of reason. He was honored to join the TDP board of directors to help with online messaging and support systems to support our mission in 2018.

Karen Crown

Past-President

A founding director of TDP, Karen brings a wealth of leadership and fundraising experience to the board. She has served as TDP’s president and is the immediate past president of the Joseph F. Cornelius Family Foundation; past president of the Junior League of Clearwater/Dunedin; past president of Suncoast Family YMCA; past president of St. Paul School Parents’ Association; past president of Tri Delta Clearwater Alumnae Association. Karen’s professional experience includes her roles at Executive Director of UPARC Foundation (now ARC of Tampa Bay Foundation) and Executive Director of the Florida Blood Services Foundation. Additionally, she has served on the boards of the Salvation Army Advisory Board; Isaiah’s Inn; Leadership Pinellas; Leadership Tampa Bay; Church of the Ascension Vestry; Morton Plant Community Affairs; Clearwater Library Foundation; UPARC Foundation; American Red Cross; Florida Prostate Cancer Center Network; Association of Fund-Raising Professionals and Carlouel Yacht Club.

Beth Pike

Secretary

Beth Pike became involved with The Dysautonomia Project when her daughter, at age 25, became acutely ill. Her daughter spent more than 60 days in 2 hospitals trying to figure out what was wrong with her, and why she was so desperately ailing. Her daughter is still currently a research patient at the NIH hoping to shed light on the autonomic nervous system for others. Her professional career as a physical therapist assistant for over 25 years serves her in educating patients about Dysautonomia and what’s happening to their bodies. Patients need safe and manageable exercise protocols to improve their overall health and mental wellbeing . Beth serves as Secretary of TDP and on the board of directors in order to help create hope for dysautonomia patients, and their families, so they won't have to go through the despair and isolation that her family has suffered

Nate Freeman

Interim Treasurer, Past-President

Nate and Kelly Freeman founded Network People, Inc. in 1996, a company that specializes in IT security/management and website digital marketing. Nate is the president of Network People. He holds a bachelor’s degree from Willamette University in Business Economics. He co-founded The Dysautonomia Project with Kelly in 2014 and has served as its president and currently serves as Treasurer. Nate serves on the board of the Joseph F. Cornelius Foundation as Treasurer.  He and Kelly are passionate about building and strengthening marriages and currently serve as leaders in a marrieds ministry at church.  He is also an active alumni member of Leadership Pinellas.  Previously, Nate served on the board of the ARC Tampa Bay Foundation and as the Technology Advisory Board of the YMCA. 

Alexandra Key

President

Alexandra is a founding board member of TDP. She witnessed first hand the dismantling of TDP founder Kelly Freeman’s life as her dysautonomia diagnosis unfolded. Through this gained understanding, she has helped several friends navigate to a diagnosis with TDP resources. Alexandra is pleased to contribute to this worthy cause by using her past experience in non-profit work and is greatly encouraged by the strides made since TDP’s inception.

Carlton Ward

Past-President

Mr. Ward received a B.S.A. in 1970 and a J.D. in 1973 from the University of Florida. A native of Tampa, Florida, Mr. Ward has been involved in many professional and community activities since moving to Clearwater, having served on organizations, including the Clearwater Bar Association, the American Bar Association Real Property, Probate and Trust Law Division, American Bar and Florida Bar Young Lawyers Divisions. Mr. Ward is a former President of the Pinellas Real Estate Law Council and Past Chairman of the Greater Clearwater Chamber of Commerce, the Pinellas County United Way and the United Way of Tampa Bay. Mr. Ward has lectured frequently regarding real property and condominium law. His practice includes real estate, corporate, condominium, commercial, banking, wills and trusts and general law.