POTS & Depression: An Invisible Illness Affects The Body And The Mind

By Kelly Freeman, MSM
March 21, 2015

Postural Orthostatic Tachycardia Syndrome (POTS) is a common but rarely known health condition affecting an estimated 1 in 100 teenagers and in the United States as many as 3 million adult and teen patients combined. 

One of the most common forms of dysautonomia, POTS, is a dysfunction of the autonomic, or involuntary, nervous system that involves abnormal symptoms in many parts of the body including abnormal blood flow to the heart, lungs and brain, 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.”

This chronic condition can be mild to disabling in patients and just as a short in a light bulb can cause the light to go on sometimes and flicker off at other times, the electrical impulses of the nervous system in POTS patients work, or fail to work, in a similar way. Most POTS patients experience periods of time when the severity of their symptoms and the levels of their pain vary. In some patients symptoms are mild for months at a time and then become severe for months, while others have symptoms that vary as frequently as hour to hour. Approximately 25% of POTS patients experience symptoms so severe that they are unable to attend school, work, drive, and some are bedridden.

Because the person with POTS often cannot do the things healthy people can do combined with the vast lack of understanding of POTS in both the general population and the medical field, signs of depression are common. While further study is needed to clearly understand the relationship between psychological conditions such as depression and its relationship to POTS, three research teams at Vanderbilt University, The National Institutes of Health, and Baker IDI Heart & Diabetes Institute in Melbourne, VIC, Australia have helped us begin to better understand this relationship. Four trends seem to emerge in examining recent medical literature:

  1. POTS is a Mind-Body Disorder because it is a condition with both physiological and psychological symptoms that are caused in part by abnormal release of chemical mediators known as neurotransmitters in the brain and other parts of the body.
  2. Most patients with POTS have pronounced cognitive difficulties such as inattention, which appear to be more pronounced in severity than anxiety and/or depression.
  3. Symptoms of POTS including cognitive function, anxiety and depression are worsened by stress including physical, such as orthostatic (upright) stress, or emotional stress.
  4. Neurotransmitters such as Norepinephrine, Dopamine, Adrenaline, Serotonin and Acetylcholine, which help the nervous system to work, are often released abnormally in patients with POTS and can affect the mental state of the POTS patient. It is important to use caution, especially initially, when taking antidepressant medications such as SSRIs2or SNRIs3 or other medications such as epinephrine often used in local anesthetics, which can further change the balance of these chemical neurotransmitters.

In a Vanderbilt Autonomic Dysfunction Center Study conducted in 2008 comparing POTS patients with both ADHD patients and a normal control group, researchers revealed, “Patients with POTS did not have an increased prevalence of major depression or anxiety disorders, including panic disorder, compared with the general population. Patients with POTS had mild depression. They scored as moderately anxious on the Beck Anxiety Inventory, but did not exhibit a high level of anxiety sensitivity. Patients with POTS scored significantly higher on inattention and ADHD subscales than control subjects. These symptoms were not present during childhood. Patients with POTS do not have an increased lifetime prevalence of psychiatric disorders. Although they may seem anxious, they do not have excess cognitive anxiety. They do experience significant inattention which may be an important source of disability.”

In Australia researchers studied cognition, anxiety and depression during the Tilt Table Test and found acute change in mental ability when the patient was in an upright position. “Acute changes in cognitive performance in response to head up tilt were evident in the POTS patients. It was concluded that participants with POTS have an increased prevalence of depression and higher levels of anxiety. These underlying symptoms impact on cognition in patients with POTS particularly in the cognitive domains of attention and short-term memory.”

David S. Goldstein, Senior investigator at the National Institute of Neurological Disorders and Stroke explains how dysautonomias involve both the physical and mental health of the patient. “Disorders involving the adrenaline family are, possibly more than any other ailments, mind-body disorders. In many ways the autonomic nervous system operates exactly at the border of the mind and body. This is a difficult subject for both doctors and patients. The problem is the old notion that the body and mind are separate and distinct in a person and so disease must be either physical or mental. If the disorder were physical it would be “real,” something imposed on the individual, whereas if it were mental, and “in your head,” it would not be real, but something created in and by the individual… (these notions) are outdated.” It is appropriate to note that some patients with POTS also have a more complex case than others including co-existing conditions. The research reference listed above isolated patients with a confirmed diagnosis of POTS without other co-existing medical conditions. Patients with POTS experience a three-pronged battle in managing their condition: the physical, emotional, and spiritual battle. Clearly there are many physical difficulties, which must be managed such as dealing with abnormal circulation and the abnormal response to the stress of an upright posture. As mentioned in the research above, there are also many emotional/mental difficulties to overcome. Additionally, there is the spiritual battle, which, if ignored, can in part cause the POTS patient to “lose hope.”

According to former Harvard Medical School faculty member and practicing psychiatrist, Doug Welpton, MD, there is an important distinction to be made between depression and despair. Despair is depression at it’s worst. When depression becomes despair, the person has lost hope.7 If a person is depressed, they may seem tired, lacking initiative with low energy. But, if the person who is exhibiting signs of depression “gives up” or “loses hope” it is at this stage that the person may become a danger to him/herself and/or others. It is important to note that many POTS patients consider the thought of dying as an alternative to suffering. But most do not report thoughts about planning a suicide.

If you are concerned about depression in yourself or someone you know who has POTS, seek the help of a licensed medical professional who is knowledgeable about Dysautonomia. The POTS patient who has a high level of stress, a lack of support from family and friends in dealing with their condition, and who is not connected with medical professionals who can guide them in managing their invisible illness is at the highest risk for losing hope.

The best way to keep depression from turning into despair is to fight the three-pronged battle. Physically, by gaining knowledge of POTS and finding medical professionals who are willing to have a two-way discussion, working together to create and adapt treatment plans as needed. Emotionally, to feel loved and supported by family members and friends who understand the unique needs of the POTS patient including the need to sometimes talk openly about their symptoms and the need of family members to be flexible especially when symptoms become more severe. And, spiritually, to have faith in a power greater than yourself which gives both strength and hope.

This article is written in memory of Christina Tournant (June 24, 1997 – March 5, 2015) who impacted the lives of so many people. We will continue your fight.

References:
[1] Dysautonomia International Webpage; What is Dysautonomia? March, 11, 2015
[2] Mar, Philip L, et. al. “Acute Hemodynamic Effects of a Selective Serotonin Reuptake Inhibitor in Postural Orthostatic Tachycardia Syndrome: A Randomized Crossover Trial.”, Journal of Psychopharmacology (Oxford, England) November 13, 2013.
[3] Green, Elizabeth A. et. al. “Effects of Norepinephrine Reuptake Inhibition on Postural Orthostatic Tachycardia Syndrome.” Journal of The American Heart Association; October 2, 2013.
[4] Raj, V. et. al., “Psychiatric profile and Attention Deficits in Postural Tachycardia Syndrome.” Journal of Neurology, Neurosurgery & Psychiatry; October 31, 2008.
[5] Anderson, Jake W. et. al., “Cognitive Function, Health-Related Quality of Life, and Symptoms of Depression and Anxiety Sensitivity are Impaired in Patients with the Postural Orthostatic Tachycardia Syndrome (POTS). Frontiers in Physiology. June 25, 2014.
[6] Goldstein, David S. Adrenaline and the Inner World: An Introduction to Scientific Integrative Medicine. Johns Hopkins University Press, Baltimore, MD; 2006
[7] Welpton, Doug. Phone Interview. March 12, 2015.

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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.