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.

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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

Susie watched a good friend and her family struggle to find a diagnosis for her illness. The more she learned about Dysautonomia, the more people she realized were struggling with some form of it, and did not know where to turn. Susie would like to do her part in raising awareness and continuing to find answers for coping and triumphing over dysautonomia someday.

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.

Molly duPont Schaffer

Molly’s lifelong friendship with TDP founder Kelly Freeman brought her to our Board. Molly is on staff at both Church of the Ascension and duPont REGISTRY TAMPA BAY. Her love for those she has grown up with in our community creates a large network of supporters. Molly’s passions include anything fun with her husband and children, needlepoint, and travel. Molly is on the Board of Saint Paul’s School, and is involved with the Arc Tampa Bay Foundation, Morton Plant Mease Healthcare Foundation, and Clearwater Marine Aquarium.

Bob Cottrell

Bob has owned and operated his own manufacturing business in Largo since 1974. For 20 years, he built fiberglass shells for Island Packet, Com-Pac, Spindrift, Nimble Boats and others. In 1994, Bob began making putties for the marine market. This business was sold in 2016 and he is currently retired.

Bob and his wife have been supporters of The Dysautonomia Project since its inception. They have known Kelly Freeman for over 40 years, and Nate for well over 20. Bob was honored when Nate reached out for information and advice when he was considering going into business for himself - in what was to become the very successful Network People. Bob is the past treasurer for The Dysautonomia Project, and is very excited to continue the mission of TDP!

June Bryant, DNP, APRN, CPNP-PC

June Bryant was introduced to The Dysautonomia Project in after hearing the education team speak to the Hillsborough County School District school nurses. She is a dedicated pediatric nurse practitioner in the community and nursing professor at University of Tampa.

Hunt Brand

Hunt met the Freeman family many years ago at Church where he was part of the praise team with Kelly. Over the years he also worked with Nate on various technical projects. 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. With over twenty years of experience as a senior technology leader he was honored to join the TDP team to help with online messaging and support systems to support our mission to educate healthcare professionals, patients and communities about dysautonomia.

Karen Crown

Past President

Karen Crown is Kelly Freeman’s mother. Watching her daughter suffer by being un-diagnosed, only to follow with a misdiagnosis was extremely difficult as a parent. When the initial doctor told Kelly that she was just anxious and panicky, to go home, take Xanax and see a counselor, Karen knew that she had to get involved. Karen knew there was something terribly medically wrong with her daughter.

Kelly’s quest for answers led the Crown - Freeman family to establish The Dysautonomia Project, a not for profit 501(c)(3) organization.

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 hospitals trying to figure out what was wrong with her, and why she was so desperately ailing. Beth met Kelly Freeman at a National Convention and found out that she lived nearby. Beth wants to help raise awareness and educate the medical field, along with our community, about Dysautonomia so medical providers will quickly be able to recognize the heterogenous symptoms of this disorder. Beth is involved in TDP 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.

Nate Freeman

Interim Treasurer, Past-President

Nate Freeman is a co-founder of both The Dysautonomia Project and his company Network People. He holds a bachelor of science from Willamette University, and enjoys learning about new organizations and their success stories. Nate holds a strong desire for educating the medical community about dysautonomia because his wife, Kelly Freeman, is a dysautonomia patient. After watching his wife, and his family struggle for so long to find an answer, Nate knew he had to create something to raise awareness and education in his own community. With the help of his wife, The Dysautonomia Project was born.

Nate enjoys teaching, whether it is leading a class on how to do better IT or teaching children at Sunday school. Because of his love for teaching, The Dysautonomia Project is the perfect avenue for Nate to provide his vision and leadership to medical professionals on the community level.

Alexandra Key

Vice 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

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.