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Tina Borsa, LCMHC is a highly motivated individual with over 20 years’ experience working with
children, adolescents, and adults as a teacher, counselor, and mentor. Experience with at-risk
as well as high functioning clients in both individual and group settings. Worked with culturally
diverse individuals from various socioeconomic backgrounds. Strong organizational skills that
assist in a team environment. Currently, Tina is a Senior Staff Clinician and Training Director at a
nonprofit outpatient counseling center in Keene, New Hampshire.
As a clinician, she specializes in working with children and their families, adolescents, and
adults. Tina brings her experience with play therapy to working with children who are dealing
with trauma, behavioral and emotional problems. She works with children and adolescents with
behavioral, school, and social problems. Tina is also trained in Emotional Freedom Technique (EFT) and mindfulness techniques as well as family systems theory. Tina is an EMDR (Eye Movement Desensitization and Reprocessing) Certified Therapist. Tina has also worked with children and adults that have had disabilities including but not limited to Spina Bifida and Cerebral Palsy. With adults her clients include those with depression, anxiety, and trauma. Tina has a holistic approach with a focus on creative expression such as Soul Collage to help people
find purpose and hope in their daily lives. As training director, Tina brings her passion for networking and connecting with the community. She truly enjoys helping student interns and pre-licensure clinicians navigate their way in the clinical world and form their professional identity. She believes the training program has a critical role in being both a resource to our community and providing education.
In her personal life, Tina is a caregiver to her husband, Matt, who lives with a Traumatic Brain Injury (TBI) and deals with other medical complications. They live in southwestern New Hampshire with their Siberian Husky, Snow.

Lori Lohmann is a Master’s level clinician in a community mental health setting.
Lori has worked in mental health since 1988, in multiple capacities, in NJ and NH. Her experience began with an internship at a battered women’s shelter in NJ. From there, she worked for a mobile crisis unit in Monmouth and Ocean counties where she gained experience in diagnosing severe mental illnesses, such as Schizophrenia, Bipolar and personality disorders. After moving to NH, Lori  transitioned to community mental health where she has worked as a case manager, a residential counselor, and as both an adult and children’s therapist. 
The defining moment in her career development occurred in July of 2000, when her then 13 yo daughter was diagnosed with a malignant brain tumor. This profoundly informed her  perspective regarding the effects of chronic illness, both on the individual and the family system.The consequences of living with or caregiving to a person with a chronic illness can be overwhelming.   The financial, emotional, and physical fallout can lead to depression, anxiety, or both.  Having experienced all of these things in her personal life has afforded her the compassion to  help clients develop coping skills to navigate the difficult circumstance of living with chronic mental or physical challenges.
Since then, Lori’s sister has been diagnosed with dysautonomia giving her first-hand knowledge of the impact of this disorder. As a caregiver she has  learned how to advocate for clients' rights, giving her a unique perspective in working with clients. She has learned to look beyond the symptoms presented and to consider the mind/body connection in order to help people move beyond their specific diagnosis or illness.

Susanne Rimm was born and raised in Germany, but she lived in the US for over 30 years. She is a retired/disabled RN with more than 24 years of experience in the medical field. This gave her a unique advantage to research the field of dysautonomia since her diagnosis of HPOTS in 2012.
Since then she has served as a moderator on DINET's forum and she has written several articles for DINET. Susanne believes that despite the challenges of dysautonomia we can live a rich and rewarding life - as long as we make peace with our limitations.

WE WANT YOU! Tell Us Your Story About Living with Dysautonomia

As a part of this year's DINET Dyscussion Series, DINET will be sharing videos from people living with all forms of dysautonomia for October Awareness Month (October 2023). 
Sharing is EASY with our step-by-step tutorial! Videos need to be sent by Thursday, October 12th at 11:59 PM EST. Submissions will premiere on our YouTube channel on Thursday, October 26th at 1PM EST.

1. Record a 3-minute video answering the following questions.* 
 How long did it take to get diagnosed?  How has your life changed (emotionally, socially, economically, etc.) since your diagnosis?   Have there been things that have helped you adjust to life with a chronic illness?  2. Fill out our form and upload your video here!  (For a step-by-step tutorial, check out this video)
3. Join us Thursday, October 26th at 1PM EST to view all the video submissions!

*The questions are your guide to telling your story.  You don't have to answer all of them if you run out of time.  And don't worry about a blank moment or a cough or an interruption.  We can edit the video.
Please send questions or requests for technical assistance to dinetsocialmedia@dinet.org

Long COVID refers to the illness occurring after a person has had COVID-19 infection and has recovered from that infection.  Long COVID can produce many symptoms and has been linked to Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome), ME/CFS (Chronic Fatigue Syndrome) and MCA (Mast Cell Activation Disorder)
In an effort to best serve the many people coming to DINET to learn about POTS and Dysautonomia related disorders from Long-COVID, we have joined the Long COVID Alliance along with many other nonprofit organizations.
Help finding a Long COVID Clinic - Click on the link "See directory here"
Help finding a physician knowledgeable in COVID related disorders and illness - Click on the link "See directory here"
COVID-19 Insurance and Disability Denial Guidebook - The guidebook is provided by a law firm working with the Long COVID Alliance network.
Please check back.  We will add new resources and information as it becomes available.

Published Nature Reviews Microbiology, January 2023
Full article available: https://www.nature.com/articles/s41579-022-00846-2#Fig1
Abstract: Long COVID is an often debilitating illness that occurs in at least 10% of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. More than 200 symptoms have been identified with impacts on multiple organ systems. At least 65 million individuals worldwide are estimated to have long COVID, with cases increasing daily. Biomedical research has made substantial progress in identifying various pathophysiological changes and risk factors and in characterizing the illness; further, similarities with other viral-onset illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome have laid the groundwork for research in the field. In this Review, we explore the current literature and highlight key findings, the overlap with other conditions, the variable onset of symptoms, long COVID in children and the impact of vaccinations. Although these key findings are critical to understanding long COVID, current diagnostic and treatment options are insufficient, and clinical trials must be prioritized that address leading hypotheses. Additionally, to strengthen long COVID research, future studies must account for biases and SARS-CoV-2 testing issues, build on viral-onset research, be inclusive of marginalized populations and meaningfully engage patients throughout the research process.
Contributors: Hannah E. Davis, Lisa McCorkell, Julia Moore Vogel & Eric J. Topol


POTS: An overview

By edriscoll, in POTS,

An overview of Postural Orthostatic Tachycardia Syndrome
Standing up is something most of us take for granted; we've been doing it since childhood. Our bodies automatically adjust to the pull of gravity by increasing vascular tone, heart rate, and cardiac output. Blood vessels contract, heart rates increase and our systolic blood pressure remains the same or decreases slightly while diastolic pressure increases slightly (Brunner & Suddarth, 2000, p. 546). Our bodies operate in perfect homeostasis and we stand up with little effort. 
However, the simple act of standing up can be a challenge for some people. There are disorders that affect the body's ability to appropriately adjust to the pull of gravity. When the body cannot effectively adjust to upright posture, a person is said to have orthostatic intolerance. Postural orthostatic tachycardia syndrome (POTS) is a disorder characterized by orthostatic intolerance.  POTS is a disorder that is a part of the dysautonomia family of disorders.
The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (2) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012)  (Arnold, Ng, Raj, 2018)
While the hallmark of POTS is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation, and research by the Mayo Clinic suggests POTS is a limited autonomic neuropathy (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Many POTS symptoms seem to be caused by an imbalance of the Autonomic Nervous System's  (ANS) control over blood flow. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs (Fischer, 2007).
The autonomic nervous system is responsible for regulating a multitude of organs and functions throughout the body. Some of these functions include temperature, respiration, pupil dilation and constriction, salivation and the digestive tract. A patient experiencing ANS dysregulation may experience abnormalities in the many organs and functions the ANS regulates. For example, around one third to one-half of POTS patients have digestive troubles (Fischer, 2007). The problem is that blood flow is not matching the need, so blood is not going to the right part of the intestinal system when it needs to. As a result, these people have trouble with nausea. For a smaller percentage of patients, the trouble is that there is too much blood in parts of the intestines. The body is attempting to digest food when there is no food to digest. This leads to cramping and colicky-like pains (Fischer, 2007).
Patients commonly suffer from cognitive dysfunction, sleep disturbances and exercise intolerance.  The symptoms can be exacerbated by numerous factors including dehydration, heat exposure, prolonged recumbency (resting, reclining), alcohol, menstruation, and acute exercise. Syncope (fainting) is not a predominant feature of POTS (only ~20–30% actually pass out, and this is usually thought to be due to vasovagal syncope) (Shen et al., 2017); however, many patients experience frequent pre-syncopal episodes that impair functional capacity. (Arnold, Ng, Raj, 2018)
POTS can be categorized as primary, meaning it is idiopathic and not associated with other diseases, or secondary, meaning it is associated with a known disease or disorder (Grubb, Kanjwal & Kosinski, 2006). Common comorbidities include chronic fatigue syndrome, hypermobility type of Ehlers-Danlos syndrome, migraine, bowel irregularities, autoimmune disorders, and fibromyalgia(Garland et al., 2015).
POTS is described as a clinical syndrome consisting of multiple heterogeneous disorders (disorders with diverse character). Some have taken to labeling "POTS Subtypes", with article published alluding to hyperadrenergic POTS ("Hyper POTS"), neuropathic POTS ("Neuro POTS"), or hypovolemic POTS.  It is important to note that these subtypes do not all have standard definitions therefore there is a non-exclusivity of names with patients often having overlapping clinical features and symptoms that involve more than one subtype.  Also, these subtypes do not have universally accepted definitions, so the labels can be misleading.  "While one doctor may use the term "Hyper POTS" to refer to a specific set of findings, another doctor might think that it refers to a different set of findings.  In theory, this could harm a patient's care.  In our experience, these "subtype" labels are not clinically helpful."  (Arnold, Ng, Raj 2018)

People generally develop POTS after becoming sick with a virus, giving birth, or being exposed to great bodily stressors (i.e. surgery, trauma or chemotherapy). Some people have had POTS their entire lives. Teenagers sometimes develop the disorder during the years of rapid growth, and 75-80% of them can look forward to being asymptomatic when they reach adulthood (Grubb, Kanjwal & Kosinski, 2006).
The symptoms of POTS are life-altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.
It was once estimated that nearly 500,000 Americans had POTS, which made standing up a challenge (Robertson, 1999). However, with research advances and growing physician education, the number of people found to have POTS symptoms is steadily rising. It is now estimated that one out of every hundred teens has POTS (Fischer, 2007).
The minimal requirements to detect POTS on initial evaluation are a detailed medical history, physical examination with orthostatic vitals and a resting 12-lead ECG (Sheldon et al, 2015)  The medical history should document medications, other medical conditions including personal and family history of cardiac disease, joint hypermobility, autoimmunity or neurological disorders, and the nature of tachycardia including potential triggers, frequency, time of day, association with pre-syncopal or syncopal episodes, symptoms, and impact on daily activities.  (Arnold, Ng, Raj 2018)
POTS has a strong female predominance (4–5:1), and primarily affects women of childbearing age. Most patients present with POTS between 13 and 50 years of age, with a family history of orthostatic intolerance reported in approximately 13% of patients (Thieben et al., 2007).The onset can be sudden or gradual. The quantity and severity of symptoms vary from day to day.
There are treatments for POTS symptoms which can be tailored to each individual patient, especially if an underlying cause is discovered. Researchers are attempting to identify and treat the mechanisms and causes of POTS. Studies show that most patients will eventually be able to stand up with fewer symptoms (Low, 2000). Most people with POTS can look forward to experiencing improvement with proper treatment.
For more information on POTS, please view our other POTS links and resources.
1.  Amy C. Arnold, Jessica Ng, Satish Raj
               Postural tachycardia syndrome: Diagnosis, Physiology and Prognosis    
               Autonomic Neuroscience, Vol 215 December 2018
 2. Benrud-Larson, L. M., Dewar, M. S., Sandroni, P., Rummans, T. A., 
  Haythornthwaite, J. A., &  Low, P. A. (2002, June). Quality of life in    patients with postural tachycardia syndrome. Mayo Clinic Proceedings,     77, 531-537.    Full text: http://www.mayoclinicproceedings.com/inside.asp?   AID=112&UID=     3. Brunner, L. S. & Suddarth, D. S. (2000). Assessment of cardiovascular   function. In S. C. Smeltzer & B. G. Bare (Eds.), Brunner and Suddarth's   textbook medical-surgical nursing (pp. 532-563). Philadelphia, PA:   Lippincott Williams and Wilkins.     4. Fischer, P. (2007). Postural orthostatic tachycardia syndrome. Mayo Clinic   Podcast. http://www.podcastingnews.com/details/www.   mayoclinic.org/rss/heart-podcast.xml/view.htm     5. Goldstein, D., Robertson, D., Esler, M., Straus, S., & Eisenhofer, G. (2002).   Dysautonomias: clinical disorders of the autonomic nervous System.   Ann Intern Med., 137, 753–763. Full Text     6. Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia    Research Foundation Patient Conference. Minneapolis, Minnesota.     7. Grubb, B. P. (2002, October). The heterogeneity of symptoms related to    dysautonomia. Symposium conducted at the meeting of the   National Dysautonomia Research Foundation Northwest Ohio   Support Group. Toledo, Ohio.     8. Grubb B. P., Kanjwal, Y., & Kosinski, D. J. (2006). The postural   tachycardia syndrome: A concise guide to diagnosis and management.   J Cardiovasc Electrophysiol., 17, 108-112.     9. Grubb, B. P., & McMann, M. C. (2001). The Fainting Phenomenon:    Understanding why people faint and what can be done about it.      New York: Futura Publishing Company.     10. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia    Research Foundation Patient Conference. Minneapolis, Minnesota.     11. Robertson, D. (1999). The epidemic of orthostatic tachycardia and orthostatic   intolerance. The American  Journal of the  Medical Sciences, 317, 75-   77.     12. Thieben, M. J., Sandroni, P., Sletten, D. N., Benrud-Larson, L. M.,   Fealey, R. D., Vernino, S., Lennon, V. A., Shen, W. K.,  &   Low, P. A., (2007).  Postural orthostatic tachycardia syndrome: the   Mayo Clinic experience. Mayo Clin. Proc. 82, (3), 308-313.   Full Text


POTS Symptoms

By edriscoll, in POTS,

Postural Orthostatic Tachycardia is a syndrome. As such, there is a collection of symptoms that distinguish it. The symptoms are widespread because the autonomic nervous system plays an extensive role in regulating functions throughout the body. Many of these symptoms, such as low blood pressure,* may present only after prolonged standing. Symptoms will vary from person to person. The following is a list of symptoms reported by patients. When possible, we have included the percentage of patients that research reports have experienced a given symptom.
Symptoms presumed to be related to cerebral hypoperfusion:**
Lightheadedness  77.6 % (Grubb, 2000) Fainting or near fainting 60.5% of patients report near fainting (Grubb, 2000) Generalized weakness 50% (Low et al.)

  Symptoms presumed to be related to autonomic overactivity include the following:**
Palpitations 75% (Grubb, 2000) Tremulousness 37.5% (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995) Shortness of breath 27.6 % (Grubb, 2000) Chest discomfort and/or pain 24.3 % (Grubb, 2000)

  Sudomotor symptoms include the following:**
Loss of sweating 5.3 % (Low et al.) Excessive sweating 9.2 % (Robertson, 2000)
Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007).

  Symptoms that may reflect dysautonomia:**
Delayed gastric emptying 23.7% of patients report gastrointestinal complaints, including bloating (Grubb et al., 1997) Bloating after meals (Grubb et al., 1997) Nausea 38.8% (Robertson, 2000) Vomiting 8.6% (Thieben et al., 2007) Abdominal pain  15.1% (Thieben et al., 2007) Diarrhea 17.8% (Jacob & Biaggioni, 1999) (sometimes with alternating constipation) Constipation 15.1% (Thieben et al., 2007) Bladder dysfunction 9.2% (Thieben et al., 2007) (this may include Polyuria(Jacob & Biaggioni, 1999) (excessive urination) Pupillary dysfunction 3.3% (Thieben et al., 2007) Pupillary dysfunction may or may not be responsible for some other reported symptoms, such as: Blurred Vision (Grubb, 2000) and Tunnel vision (Low et al.).

  Generalized Complaint symptoms:**
Fatigue 48% (Grubb, 2000) (which can be disabling)  Sleep disorders 31.6% (Low et al.) (can cause unrefreshing sleep and an increased need for sleep) Headache/migraine 27.6% (Grubb, 2000) Myofascial pain 15.8% (Thieben et al., 2007) (characterized by regional muscle pain accompanied by trigger points) Neuropathic pain 3% (Thieben et al., 2007)

  Other symptoms reported in research that are not categorized above include:
Dizziness (Grubb, 2000) Tachycardia(Grubb, 2000) Exercise intolerance (Grubb, 2000) Clamminess (Grubb, 2000) Anxiety (Grubb, 2000) Flushing (Grubb, 2000) Postprandial hypotension (Grubb, 2000) (low blood pressure after meals)  Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color)  Intolerance to heat (Grubb & Karas, 1999) Feeling cold all over (Grubb & Karas, 1999) Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS) Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall) Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999) Cold hands (Low et al.) (and often feet & nose) Hypovolemia (Low et al.) (low blood volume) Chills (Low et al.) High blood pressure (Low et al.) Hyperventilation (Low et al.) Numbness or tingling sensations (Low et al.) Reduced pulse pressure upon standing (Low et al.) Low back pain (Mathias, 2000) Aching neck and shoulders (Mathias, 2000) Noise sensitivity (Stewart, 2001) Light Sensitivity (Stewart, 2001) Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)

  The above are symptoms reported by POTS researchers. Other symptoms sometimes reported by POTS patients include:
Arrhythmias (irregular heart beats) Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses) Easily over-stimulated  Feeling full quickly Feeling "wired" Food allergies/sensitivities (some foods seem to make symptoms worse) Hyperreflexia Irregular menstrual cycles Loss of appetite Loss of sex drive Muscle aches and/or joint pains Swollen nodules/lymph nodes Polydipsia (excessive thirst) Weight loss or gain Feeling detached from surroundings Restless leg syndrome POTS symptoms can vary from day to day. They tend to multiply and become exaggerated upon upright posture. Blood flow and blood pressure regulation are also abnormal while supine or sitting, but these abnormalities may not be as apparent and may require orthostatic stress to become evident (Stewart & Erickson, 2002). Some patients do report symptoms occurring while sitting or lying down. Heat, exercise and eating can exacerbate symptoms. Women sometimes report an increase in symptoms around menstruation.
If you are suffering from some of the above symptoms, you need to seek professional help. Please do not attempt self-diagnosis.
*Some of the above symptoms are specifically related to orthostatic hypotension, traditionally defined as an excessive fall in BP (typically > 20/10 mm Hg) on assuming the upright posture. Not all patients will experience a drop in blood pressure upon standing. Some physicians define orthostatic hypotension as a separate entity from POTS.
** The hypothesized origin of symptoms and their frequency came from the "Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience" by Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007. 
For more information about POTS, please view the additional articles, resources and links

1. Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia               Research Foundation Patient Conference. Minneapolis, Minnesota.     2. Grubb, B. P., & Karas, B. (1999) Clinical disorders of the autonomic nervous    system associated with orthostatic intolerance. Pacing and Clinical    Electrophysiology, 22, 798-810.    Full text: www.ndrf.org/PDF%20Files/disorders.PDF     3. Grubb, B. P., Kosinski, D.J., Boehm, K., & Kip, K. (1997). The postural    orthostatic tachycardia syndrome: a neurocardiogenic variant identified    during head-up tilttable testing. Pacing and Clinical Electrophysiology,    20, (9, Pt. 1), 2205-12. PMID: 9309745 [PubMed - indexed for MEDLINE]     4. Jacob, G., & Biaggioni I. (1999). Idiopathic orthostatic intolerance and postural    tachycardia syndromes. The American Journal of the Medical Sciences,    317, 88-101. PMID: 10037112 [PubMed - indexed for MEDLINE]     5. Low, P. A., Oper-Gehrking, T. L., Textor, S. C., Benarroch, E. E., Shen, W.      K., Schondorf, R., Suarez, G. A., & Rummans, T. A. (1995). Postural    tachycardia syndrome (POTS). Neurology, 45, (4, Supplement 5), S19-25.   PMID: 7746369 [PubMed - indexed for MEDLINE]     6. Mathias, C. J. (2000, July). Other autonomic disorders. National Dysautonomia   Research Foundation Patient conference. Minneapolis, Minnesota.     7. Robertson, D. (2000, July). General description of the autonomic nervous system    and orthostatic intolerance overview. National Dysautonomia Research    Foundation Patient Conference. Minneapolis, Minnesota.     8. Sandroni, P., Opfer-Gehrking, T. L., McPhee, B. R., & Low, P. A. (1999).    Postural tachycardia syndrome: clinical features and follow-up study. Mayo    Clinic Proceedings, 74, (11), 1106-1110.    PMID: 10560597 [PubMed - indexed for MEDLINE]   9. Stewart, J. M., (2001, Spring/Summer). About being young and dizzy: overview    of dysautonomia. National Dysautonomia Research Foundation Youth    Network Fainting Robins Newsletter, "The Young and the Dizzy", 1, 1-2.     10. Stewart, J. M., & Erickson, L.C., (2002). Orthostatic intolerance: an overview.   In Alejos, J. C., Konop, R., Chin, A. J., Herzberg, G., Neish, S. (Eds.).    emedicine Journal, 3, (1). http://www.emedicine.com/ped/topic2860.htm     11. Thieben, M. J., Sandroni, P., Sletten, D. N., Benrud-Larson, L. M.,   Fealey, R. D., Vernino, S., Lennon, V. A., Shen, W. K.,  &   Low, P. A., (2007).  Postural orthostatic tachycardia syndrome: the   Mayo Clinic experience. Mayo Clin. Proc. 82, (3), 308-313.    

When many people hear the term "volume depleted" in reference to a person's condition, they mistakenly think it means the same thing as saying a person is dehydrated.  But the difference between the two is an important thing to understand. 
Total body water makes up 45 to 60% of body weight depending on age, gender and race.  Total body water is then broken up into intracellular and extracellular body fluid.  Each of these compartments represents 45 and 55% of the total body water. The extracellular compartment is further divided into plasma volume, interstitial volume, and bone and connective tissue water.  Finally, blood volume includes the sum of extracellular plasma volume and red blood cell volume. (1) What does all of that mean?  Simply put, the amount of water in your body is not the same as the amount of fluid in your tissues or the amount of water in your blood (plasma). 
The term "hypovolemia" refers to decreased volume in the vascular system.  This can be with or without the loss of total body water (dehydration).  In fact, severe dehydration can cause hypovolemia, as can vasodilation. It is vasodilation that is at the root cause of one recognized POTS subtype - Hypovolemic POTS.
Vasodilation is the widening of blood vessels causing an increase of blood flow and a decrease in blood pressure.  In a healthy body this happens automatically as a part of the autonomic nervous system  in response to increases in temperature, low oxygen levels, medications, exercise, and other things. (2)  When vasodilation does not occur the way it should it can result in hypovolemia, meaning the vascular system in the body does not have enough fluid volume.  In the case of hypovolemia, drinking water alone can not correct the issue because filling up the tank (the stomach) with water can not be guaranteed to increase the volume within the vascular system if the flow is restricted by a dysfunctional pathway, in this case vasodilation in a dysfunctional Autonomic Nervous System.   
Hypovolemic POTS describes a person with POTS symptoms as a result of low blood volume (hypovolemia).  For a person with Hypovolemic POTS, treatment is centered around balancing an adequate intravascular volume by increasing fluid intake to 2 to 3 liters per day and salt intake to 10 to 12 grams per day, in many cases medications are used to assist the body in correct vasodilation.  IV hydration is also sometimes used to help the body maintain the body's fluid balance.
For more information about the subtypes of POTS, including hypovolemic POTS, please visit https://youtu.be/U0s26KdDDdU?feature=shared
For a better understanding of how the Autonomic Nervous System functions, please visit https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/understanding-the-autonomic-nervous-system-r208/
1. Guatam Bhave MD, PhD, Eric G Neilson, MD, "Volume Depletion versus Dehydration: How understanding the difference can guide therapy", published by National Library of Medicine, June 2011  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4096820/
(2)  Cleveland Clinic website, "Vasodilation"  https://my.clevelandclinic.org/health/diseases/23352-vasodilation#symptoms-and-causes
Image:  Cleveland Clinic website "vasodilation"

How to prepare for an ER trip or a visit to a new medical practice.
Going to the ER or to a new doctor’s office can be a stressful experience.  To complicate things, dysautonomia is not very well understood and by nature includes the dysfunction of a complex set of multiple systems within the body.  
The best way to combat these issues is to be well prepared.  Let’s face it, it can’t be easy for the ER team, to have a patient in front of them talking about illness and treatments that they know little, if anything, about.  So since they can’t prepare, it falls to you.
Here are some suggestions to help you get ready in advance.
Long before you are in need of new services, create a medical notebook.  Download one or two medical articles related to your particular form of dysautonomia, a list of ALL of your medications (even the things that don’t necessarily come by prescription, like the vitamins you take and the lemon-mint tea that helps you digest), a listing of your medical history (past and current) and at least one doctor at the center of your treatment that can fill in any blanks.  It is very helpful if you can arrange an understanding with your “go-to” doctor in advance so they are willing to jump in when needed. A few cheat sheets are included with this to help you get started. Be sure to have water and a snack with you for the wait and don’t forget to bring your current meds with you.   As we all know, dysautonomia symptoms do not always follow the “normal” course of accepted action and reaction.  For example,  in the case of certain types of dysautonomia, the standard test for dehydration may return normal levels and volume, yet if the medical team understands what to look for, they might see that the person has dangerously low levels of sodium.  This is just one example, there are many more examples of vital information that can be missed because this illness does not follow the standard, expected reactions of other illnesses.  Be sure to include the HR range and BP range that is “normal” for you.   And this brings us to the next extremely important preparation to make before you go to the ER or to a new medical team - advocacy.  You have to be ready as the patient to advocate for yourself or if you feel too sick to take on what could be an uphill battle, then prepare to bring someone with you who you trust and who understands your illness well. Understand before you even get there, that if the ER staff or new doctor and nurse you are there to consult with, are unwilling to read the articles you’ve brought with you, or to take their time going through and asking questions about your medical history, then this is not the place for you.  If a new team has an uncooperative attitude from the beginning, if they are unwilling to listen and understand the information you have about this complex and unusual illness, then they are unable to treat you properly.   The link below is a pdf of this guide along with a printable worksheet that you can fill out in advance listing medications, health history, etc.  It is always better to do the preparation in advance when you are feeling well, then depending on remembering important facts when you are at your worst. 
Patient Guide - medical trips.pdf

NOTE:  If you are a part of a support group or and would like to receive printed materials to share with family, or local medical community, please contact webmaster@dinet.org DINET supports your efforts!
You have what?  You may have said words like that to your friend or family member when they told you they had a diagnosis.  When they began trying to explain things like dysautonomia, autonomic dysfunction, tachycardia and the many other rarely heard words, you may have felt it was all too obscure, too medical to understand.  You're right, those are a lot of complex processes and difficult concepts to tie together.  Even a large part of the medical community doesn't know about it.  
If you have a friend or family member who has been diagnosed with an illness falling under the umbrella term "dysautonomia", this guide will hopefully help you understand it and better help support your loved one.
What is dysautonomia?
Dysautonomia, simply put, refers to a sort of misfiring of the processes in your body that normally function without you needing to think about them. For example, when you go from a dark room to a backyard on a sunny day, you don't make your pupils contract to protect your eyes from the bright light.  And you don't have to think about whether your pupils will dilate to allow more light in, when you return to the dark room.  For a person with a dysautonomia illness, their pupils may not react automatically.  That dysfunction of an automatic system/response in the body is autonomic dysfunction - the core of dysautonomia.
Why does my friend/family member have so many different complaints?  There can't be that many things wrong with them, can there?
The example above doesn't sound too hard to live with maybe, but if you stop and think about all of the functions of the body that we don't have to think about - all of the autonomic functions - we can quickly understand how debilitating this illness can be and how widespread.
There are many types of dysautonomia (about 15 types) but they all involve the autonomic nervous system (ANS).  The ANS controls:
regulating a constant internal temperature regulating breathing patterns keeping blood pressure steady - regardless of body position regulating the heart rate urination/excretion pupil dilation The next time your friend or family member is sweating profusely, has a migraine headache and can't stand up without feeling faint, you will understand better how this can all be happening.
What are the symptoms?
The symptoms vary depending on the type of dysautonomia, but the most common symptoms are:
lightheadedness & fainting tachycardia or fast heart rate chest pains shortness of breath stomach upset exhaustion - far beyond normal tiredness over-sensitivity to temperatures (extreme sweating regardless of temp) "brain fog" - confusion or memory loss that passes What can I do to help?  When do I call 911?
If in doubt call 911, especially if the person loses consciousness or can not speak or help themselves.  It is always better to call than to risk the results of not calling when you should have.  But, most cases of fainting or lightheadedness, extreme tachycardia or BP, will resolve itself if the person returns to a lying down position.  But that is very dependent on the type of dysautonomia and the other illnesses present. Always call if you are concerned.
Understand, support and spread the word!  There is nothing that feels better to a person struggling to live through an illness, than to be believed and understood.  Too many times patients go through years of being told by the people around them that they are anxious or stressed or they need to push passed their symptoms.  When your body feels so out of your control, the last thing that you need to hear is that you should be able to control your symptoms somehow. Once you understand the illness, advocate for your loved one and help them be heard.
Remind and support their efforts to be well.  Remind them to hydrate.  Good hydration with electrolyte products is essential to feeling well.  Read more about the effects and pick up a coupon for an electrolyte drink - Banana Bag.
Keep them from feeling alone.  One of the tough parts of this illness is feeling as though the world is going on without you.  On their bad days, instead of trying to push the person to try and do what you can do, try adapting yourself to what they can do.  If you invite them to go for a swim and they can't, change the plan to playing cards, listening to music, or just a visit.  Your company will go a long way.
To learn more about illnesses classified under the dysautonomia umbrella, visit the Information Resources section of our site or visit our YouTube channel for more information.

This year's DINET Dyscussion Series will dive into the topics of Mental Health, Depression and Anxiety with Chronic Illness, POTS Subtypes and Patient Stories.  
POTS Subtypes 101
POTS is the most recognized type of dysautonomia but it isn't the end of the story.  Understanding the many subtypes of POTS and the differences in symptoms and treatment is a vital part of management.  This important session will be led by Susanne Rimm, RN living with HyperPOTS.  Susanne has years of clinical and personal experience that she will bring to this discussion, as well as years moderating DINET's patient forum. 
10/5, 1 PM *
Mental Health and Chronic Illness, Part I and Part II
The Mental Health series will be presented in two sessions.   Tina Borsa, LCMHC and Lori Lohrmann, MA, professionals with years of experience in the field of crisis intervention, disability management and adolescent as well as adult care will join DINET for these discussions.  They are both also caregivers to close family members with chronic illness.  They will lend their unique perspectives to the subject of depression, anxiety, grieving, treatment and other topics from the clinical definitions to the real world experiences.   10/12 and 10/19 (Part 1 and Part 2) at 1 PM*

*If you can not be a part of the premieres of these videos, you can watch at a later date on the DINET YouTube channel along with over 80 original videos about living with dysautonomia.
Living with Dysautonomia: Patient Stories**
People living with dysautonomia all have important stories to share.  How it all began, the time to diagnosis, the impact on their lives and how they cope.  Patients recordings of their own stories shared with all of us. An important session that you are guaranteed to relate to and an important session to help a friend or family member learn more about your experiences. 10/26, 1 PM
** If you would like to submit a video for this session, you must do so by 10/12.  Please visit this page for information.
Ways you can help the Dysautonomia community during Awareness month.
If you value the work that DINET does, including the original videos, research, education for patients and the medical community, please consider supporting DINET with a donation or by volunteering. Your generous donations go towards providing our web services, maintaining our patient forum, providing printed materials, producing original videos, newsletters and multiple special projects to benefit the dysautonomia community and to help educate medical communities about dysautonomia.   There is no amount too small to be helpful.  Please  donate now through the PayPal Giving Fund.   Print or email information from our website or request printed materials from us to give to medical professionals in your area, for support groups, for educators - coaches, school nurses and other people who interact with your teenage child and to give to family and friends to help them better understand your struggle.  Organizing a presentation about dysautonomia/POTS?  Request materials for your group webmaster@dinet.org Join or start a local support group or begin a private support group  online.  Participate in or begin a fundraiser for an organization or project that supports the dysautonomia community.   Whatever you choose to do, please reach out and spread the word.   ********************************************************* 

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