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Dysautonomia is an umbrella term used to describe a collection of disorders related to the dysfunction of the Autonomic Nervous System (ANS). So to understand dysautonomia, it begins with understanding how the ANS works. The autonomic nervous system regulates certain processes that occur automatically within the body, without a person's conscious effort to make them work. These processes are things like breathing, heart rate, and blood pressure. When the autonomic nervous system doesn't work correctly (dysfunctions) it can affect any body part or process. These disorders may be reversible or they may progressively worsen over time. The ANS is the part of the nervous system responsible for the function of our blood vessels, stomach, intestines, liver, kidneys, bladder, genitals, lungs, pupils, heart and sweat,, salivary and digestive glands. It is easy to see how debilitating disorders of the ANS can be since they affect so many parts of the body. The autonomic nervous system has two main divisions: Sympathetic Parasympathetic Both of these divisions are affected when the ANS is not working properly. To understand this better, it is important to understand how this works within the body. When a signal is received by the ANS from the body and the environment, it responds by stimulating processes within the body, usually through the sympathetic portion of the ANS, or it inhibits a process through the parasympathetic division of the ANS. For example; the heat in a room gets turned up. This is an external message that is received by the ANS within the body. A properly functioning ANS would respond by sending a signal causing the body to sweat. This would be a natural reaction to received stimuli. The processes the ANS are responsible for are: Blood pressures Heart rate and respiration (breathing) Body temperature Digestion Metabolism (affects weight) The balance of water & electrolytes (affecting sodium & calcium levels) Production of body fluids (affecting saliva, sweat & tears) Urination Defecation Sexual response One of the more challenging aspects to understand is that although many organs are controlled primarily by the sympathetic or parasympathetic divisions, sometimes the two divisions can have opposite effects on the same organ. For example, the sympathetic division increases blood pressure, and the parasympathetic division decreases it. Overall, the two divisions work together to ensure the body responds appropriately to different situations. (Low, Dec 2018) The sympathetic division prepares the body for stress and emergency situations - Fight or Flight. The fight or flight mechanism increases the heart rate and blood pressure (the force that the heart contracts) it dilates (widens) the airways making breathing easier. It causes the body to release stored energy and muscular strength is increased. It also causes your palms to sweat, pupils to dilate and your hair to stand on end. It slows down the processes within the body that are less important in an emergency, like digestion and urination. (Low, Dec 2018) On the other hand, the parasympathetic division controls the processes in the body during ordinary situations. Generally, it conserves and restores. It slows the heart rate and decreases blood pressure. It stimulates digestion causing the body to process food and eliminate waste. It uses energy from processed food to restore and build body tissue. Two chemical messengers (neurotransmitters) are used to communicate within the autonomic nervous system: Acetylcholine Norepinephrine Nerve fibers that secrete acetylcholine are called cholinergic fibers. Fibers that secrete norepinephrine are called adrenergic fibers. Generally, acetylcholine has parasympathetic (inhibiting) effects and norepinephrine has sympathetic (stimulating) effects. However, acetylcholine has some sympathetic effects. For example, it sometimes stimulates sweating or makes the hair stand on end. (Low, Dec 2018) The role of cholinergic and adrenergic fibers continues to be studied in dysautonomia research and particularly the role they play in the ANS function of POTS patients. Conclusion Dysautonomia is the dysfunction of the autonomic nervous system. Because the ANS does not respond correctly to the messages it receives, it results in the misfiring of the processes described above. The causes of dysautonomia are not always known. It is important to understand that although there are patients who develop dysautonomia disorders as their primary illness, there are many more who develop dysautonomia disorders secondary to other illnesses that cause the dysfunction of the ANS, such as Parkinson's Disease, EDS, Spinal Cord trauma or Brain Injury, and many others. Follow this link to read more about the mechanisms within the body associated with various types of dysautonomia disorders, Explore the Information Resources section of this site to learn more about specific disorders related to the dysfunction of the ANS. RESOURCES Phillip Low, MD, Professor of Neurology, College of Medicine, Mayo Clinic; Consultant, Department of Neurology, Mayo Clinic updated December 2018 Merck Manual, Consumer Edition, full text https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Image: https://www.merckmanuals.com/home/brain,-spinal-cord,-and-nerve-disorders/autonomic-nervous-system-disorders/overview-of-the-autonomic-nervous-system

Dysautonomia is an umbrella term used to describe a collection of disorders related to the dysfunction of the Autonomic Nervous System (ANS). So to understand dysautonomia, it begins with understanding how the ANS works. The autonomic nervous system regulates certain processes that occur automatically within the body, without a person's conscious effort to make them work. These processes are things like breathing, heart rate, and blood pressure. When the autonomic nervous system doesn't work correctly (dysfunctions) it can affect any body part or process. These disorders may be reversible or they may progressively worsen over time. The ANS is the part of the nervous system responsible for the function of our blood vessels, stomach, intestines, liver, kidneys, bladder, genitals, lungs, pupils, heart and sweat,, salivary and digestive glands. It is easy to see how debilitating disorders of the ANS can be since they affect so many parts of the body. The autonomic nervous system has two main divisions: Sympathetic Parasympathetic Both of these divisions are affected when the ANS is not working properly. To understand this better, it is important to understand how this works within the body. When a signal is received by the ANS from the body and the environment, it responds by stimulating processes within the body, usually through the sympathetic portion of the ANS, or it inhibits a process through the parasympathetic division of the ANS. For example; the heat in a room gets turned up. This is an external message that is received by the ANS within the body. A properly functioning ANS would respond by sending a signal causing the body to sweat. This would be a natural reaction to received stimuli. The processes the ANS are responsible for are: Blood pressures Heart rate and respiration (breathing) Body temperature Digestion Metabolism (affects weight) The balance of water & electrolytes (affecting sodium & calcium levels) Production of body fluids (affecting saliva, sweat & tears) Urination Defecation Sexual response One of the more challenging aspects to understand is that although many organs are controlled primarily by the sympathetic or parasympathetic divisions, sometimes the two divisions can have opposite effects on the same organ. For example, the sympathetic division increases blood pressure, and the parasympathetic division decreases it. Overall, the two divisions work together to ensure the body responds appropriately to different situations. (Low, Dec 2018) The sympathetic division prepares the body for stress and emergency situations - Fight or Flight. The fight or flight mechanism increases the heart rate and blood pressure (the force that the heart contracts) it dilates (widens) the airways making breathing easier. It causes the body to release stored energy and muscular strength is increased. It also causes your palms to sweat, pupils to dilate and your hair to stand on end. It slows down the processes within the body that are less important in an emergency, like digestion and urination. (Low, Dec 2018) On the other hand, the parasympathetic division controls the processes in the body during ordinary situations. Generally, it conserves and restores. It slows the heart rate and decreases blood pressure. It stimulates digestion causing the body to process food and eliminate waste. It uses energy from processed food to restore and build body tissue. Two chemical messengers (neurotransmitters) are used to communicate within the autonomic nervous system: Acetylcholine Norepinephrine Nerve fibers that secrete acetylcholine are called cholinergic fibers. Fibers that secrete norepinephrine are called adrenergic fibers. Generally, acetylcholine has parasympathetic (inhibiting) effects and norepinephrine has sympathetic (stimulating) effects. However, acetylcholine has some sympathetic effects. For example, it sometimes stimulates sweating or makes the hair stand on end. (Low, Dec 2018) The role of cholinergic and adrenergic fibers continues to be studied in dysautonomia research and particularly the role they play in the ANS function of POTS patients. Conclusion Dysautonomia is the dysfunction of the autonomic nervous system. Because the ANS does not respond correctly to the messages it receives, it results in the misfiring of the processes described above. The causes of dysautonomia are not always known. It is important to understand that although there are patients who develop dysautonomia disorders as their primary illness, there are many more who develop dysautonomia disorders secondary to other illnesses that cause the dysfunction of the ANS, such as Parkinson's Disease, EDS, Spinal Cord trauma or Brain Injury, and many others. Follow this link to read more about the mechanisms within the body associated with various types of dysautonomia disorders, Explore the Information Resources section of this site to learn more about specific disorders related to the dysfunction of the ANS. RESOURCES Phillip Low, MD, Professor of Neurology, College of Medicine, Mayo Clinic; Consultant, Department of Neurology, Mayo Clinic updated December 2018 Merck Manual, Consumer Edition, full text https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Image: https://www.merckmanuals.com/home/brain,-spinal-cord,-and-nerve-disorders/autonomic-nervous-system-disorders/overview-of-the-autonomic-nervous-system

DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003

DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. COVID-19 Research: New research study conducted by Dr. Blitshteyn to examine the impact of COVID-19 on patients with pre-existing neurological disorders including POTS, OH, MSA, Neuropathy and Chronic Migraine. The study includes a 5 min anonymous survey that a patient's neurologist would fill out. Please share this survey with your neurologist if you have tested positive for COVID-19 and you are being treated by a neurologist for the disorders listed. https://patientscount.org/ NEW: A look at POTS as an autoimmune disease and updates on the latest autonomic research https://link.springer.com/article/10.1007/s10286-019-00661-5 NEW: Drug discovery programs for synucleinopathies in Multiple System Atrophy https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1008222 NEW: The impact of dysautonomia on patients with Guillian-Barre Syndrome http://bit.ly/2wu9tJZ NEW: Test developed for CFS/ME to detect the reaction of immune cells and blood plasma to stress. (Pub May 2019) https://www.pnas.org/content/early/2019/04/24/1901274116 Research published by Frontiers in Neuroscience demonstrate improvements in cognitive function, as well as a decrease in HR in POTS patients after rapid water ingestion. (Pub April (2019) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6465605/ Study released by Dr. Lucy Diss and colleagues about the effects of propofol on motility. Published in Autonomic Neuroscience. (in progress for Pub July 2019) Abstract: https://www.sciencedirect.com/science/article/abs/pii/S1566070219300426 Study released by Dr. Julian Stewart and colleagues discusses Postural Hyperventilation and the resulting variant POTS disorder. Pub Journal of the American Heart Association. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6064900/ An examination of the experimental and clinical trials conducted in the treatment and diagnosis of MSA. Pub Science Direct, Autonomic Neuroscience Vol 211 https://www.sciencedirect.com/science/article/pii/S1566070217301522 The Journal of Parkinson's Disease reviewed the impact of different exercise modes on people suffering from Parkinson's Disease. Pub IOS Press, Feb 2019 https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181484 Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003

Autonomic nerve disorders (dysautonomia) refer to disorders of the autonomic nervous system (ANS) function. Dysautonomia is a general term used to describe a breakdown or abnormal function of the ANS. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide-ranging and can include problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, and cognitive impairment. (1. Mayo Clinic, Autonomic Nerve Disorders 2019) Some forms of dysautonomia include; Postural Orthostatic Tachycardia Syndrome (POTS), Orthostatic Hypotension (OH), Orthostatic Intolerance (OI), Neurocarciogenic Syncope (NCS), Pure Autonomic Failure (PAF), Multiple System Atrophy/Shy-Drager syndrome (MSA). There are many advanced tests used for further diagnosis once some form of dysautonomia is detected. The most common tests used are as follows. The tilt table test is often the standard method used for detecting types of dysautonomia. A patient is strapped to a mechanical table, which will tilt them upright at an angle of at least 60 degrees. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of Autonomic Dysfunction is 40 minutes or until they faint, at which point the test is concluded (Carew, Cooke, O'Connor, Donnelly, Costelloe, Sheehy & Lyons, 2009). Some patients are given a drug called isoproterenol through an intravenous line during this test. Isoproterenol is used to test the sensitivity of beta-receptors. People who have POTS with beta-receptor supersensitivity and a hyperadrenergic state will generally have an exacerbation of symptoms due to this drug. Other drugs that are sometimes used in place of isoproterenol include nitroglycerin, edrophonium, adenosine triphosphate, ephedrine and nitroprusside (Grubb & McMann, 2001). The tilt table test may be combined with transcranial doppler ultrasonography. Transcranial doppler ultrasonography is useful in detecting a reduction in cerebral blood flow (Fredman, Biermann, Patel, Uppstrom & Auer, 1995). A number of patients with orthostatic issues will have a decrease in blood flow to the brain upon standing (Low, 2000). This can occur even if the patient does not become hypotensive (Low, 2000). Bowel motility studies are useful in ascertaining the degree of gastrointestinal involvement present (Grubb, Kanjwal & Kosinski, 2006). A catecholamine test is sometimes given to patients suspected of having chemical abnormalities. Testing one's levels of catecholamines and their metabolites is also useful in detecting certain tumors, such as pheochromocytoma. Some patients will have abnormal catecholamine levels, particularly norepinephrine levels. Norepinephrine is the main chemical messenger of the sympathetic nervous system, and is often elevated in certain types of dysautonomia patients. A physician can determine one's total catecholamine levels through analysis of their blood or urine. The blood test is quite simple. The patient will have to lie quietly for a period of time (usually around 30 minutes) before their blood is drawn. Some doctors believe a more accurate reading is gained if an intravenous line is placed in the patient's arm before the resting period. This is because the fear and pain associated with needles may induce a rise in catecholamines that could obscure results. Other doctors will use the 24-hour urine catch method to determine catecholamine levels. The patient is given a container to collect their total urine volume over a 24-hour period. The container is then returned to the physician and catecholamine levels are assayed. The cold pressor test is used to activate the blood pressure control system. The patient places their hand in ice water during this test. The physician will monitor blood pressure changes. This test can be used to localize a sympathetic lesion in the afferent or efferent limb of the baroreceptor reflex arc (Engstrom & Aminoff, 1997). Deep breathing/Paced respirations are tests that evaluate autonomic function by measuring heart rate responses to controlled breathing. Electromyography (EMG) is sometimes used to test the electrical activity of nerves and muscles. A needle electrode(s) is inserted through the skin into the muscle. The measured muscle response to nervous stimulation can detect nerve or muscle disorders. A nerve conduction study may be given concurrently with electromyography. During this test, muscles and nerves are stimulated with small bursts of electricity to determine if they are functioning in a normal manner. The Hand-grip test is a simple and non-invasive test of sympathetic function. Some physicians feel its sensitivity and specificity compare favorably with the tilt table test (Khurana & Setty, 1996). During this test, a patient squeezes a hand-grip until their arm is fatigued. Those with autonomic dysfunction may have an excessive diastolic blood pressure response to this test. Magnetic resonance imaging (MRI)/(MRA) can be used to diagnose some conditions thought to be associated with autonomic dysfunction, such as tumors, Chiari, cervical stenosis or the nutcracker phenomenon. This test encompasses a powerful magnet, low-intensity radio waves, and computer technology. The patient lies still inside the magnet. The magnetic field and different radio frequencies allow a specialized computer to generate detailed images of the inside of the body. The Stand-Up MRI may lead to interesting findings in POTS patients. Microneurography is sometimes used to record traffic from the peripheral nerves. A small needle is placed into a nerve in the leg. Physicians can then measure nerve signals traveling from the brain to the blood vessels. Some POTS patients have nerve damage in their legs (Low, 2000).. Sweat tests such as the thermoregulatory, resting sweat output and the quantitative sudomotor axon reflex are sometimes given to patients to determine if they are sweating appropriately. Many people with forms of dysautonomia will have impaired sweating abilities. Some patients report inappropriate sweating, including night sweats. During the thermoregulatory sweat test, the patient wears a disposable bathing suit and an orange powder is applied to the skin. The patient is then placed in a hot environment to induce sweating. The orange powder will turn purple where the patient sweats. In this way, physicians can determine if the patient has abnormal sweating patterns. A small battery operated current may be used to stimulate the sweat glands directly during the resting sweat output test. The quantitative sudomotor axon reflex test (QSART) is used to determine sweat volume and latency of response. It can also be used to test for postganglionic lesions (Fealey, 1996, p. 297). A reduced or absent sweat response indicates postganglionic sympathetic sudomotor failure. Used in conjunction with the thermoregulatory sweat test, QSART can differentiate a pre- from the postganglionic lesion (Low, 2003, 407-421). Some patients may be given a 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). One study performed by researchers at the Mayo Clinic showed that 28.9% of POTS patients excreted less than 100 mEq in 24 hours and 66.4% excreted less than 150 mEq in 24 hours. These researchers concluded that an important first step in the assessment and treatment of POTS is to determine the patient's volume status and institute salt and fluid replacement in those with hypovolemia (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). A study of neurocardiogenic patients noted that those with a urinary sodium excretion <170 mmol/24 hrs. were more likely to have reduced plasma volume (El-Sayed & Hainsworth, 1996). These patients responded well to salt loading. A patient may also be given a test to determine total red cell mass and plasma volume. Hypovolemia is sometimes found in conjunction with POTS. Plasma volume may be reduced or red cell mass may be reduced in the POTS patient (Low, 1993). Another test that is sometimes used to determine autonomic dysfunction is the Valsalva maneuver. This is a test of baroreflex responsiveness. A physician will have the patient blow into a tube while observing heart rate and blood pressure changes. Impaired baroreflex appears to be characteristic of moderate to severe forms of dysautonomia (Stewart, 2002). Patients may have an excessive blood pressure increment after cessation of the maneuver that is sometimes associated with headache (Sandroni, Novak, Opfer-Gehrking, Huck & Low, 2000). Some researchers report normal heart rate responses during the maneuver and conclude that the assessment of heart rate responses during this test does not contribute to the diagnosis of POTS (Braune, Wrocklage, Schulte-Monting, Schnitzer & Lucking, 1999). A Patient may be given various tests to determine how dysautonomia is affecting their heart. Sinus tachycardia commonly occurs in those with dysautonomia. A patient may be asked to wear a Holter monitor to determine if their heart is functioning correctly. This device allows physicians to record the heart's activity over an extended period of time (usually 24 hours). Electrodes are placed at various locations on the patient's chest. These electrodes are attached to a small portable recorder. A patient may be asked to keep a written journal of any symptoms they experience while wearing the Holter monitor. Irregular heart rhythms are recorded and then evaluated by a physician. Endless-loop recorders or event recorders are sometimes used instead of Holter monitors. These recorders are smaller and can be worn for months at a time. Patients will press a button after experiencing symptoms such as tachycardia or fainting. An ECG of the event will be recorded and transmitted via telephone for a physician to access. A stress test can be used to determine how exercise might affect the dysautonomia patient. The patient walks on a treadmill until a target heart rate is reached. The test is ceased if the patient becomes exhausted or develops complications. The heart's electrical activity is recorded while the patient exercises. Sometimes an echocardiogram will be performed along with the stress test. An echocardiogram is an ultrasound of the heart. This test helps physicians identify abnormalities in the heart's structure and function. The above are only some of the tests that may be given to a patient suspected of having autonomic dysregulation. It is important for patients to ask their physician if they should discontinue their medication before taking specific tests. Some medications that have been reported to significantly affect autonomic testing results include chlorpromazine, thioridazine, tricyclic antidepressants, bupropion, mirtazapine, venlafaxine, clonidine, alpha blockers, beta blockers, calcium channel blockers, opiates and topical capsaicin (Sandroni, 1998). A patient taking medication to lessen symptoms will present with decreased symptoms upon testing. A patient should always consult their physician before discontinuing any medication. Resources 1. Mayo Clinic, Autonomic Nerve Disorders, Full Text Link 2. Braune, S., Wrocklage, C., Schulte-Monting, J., Schnitzer, R., & Lucking, C. H. (1999). Diagnosis of tachycardia syndromes associated with orthostatic symptoms. Clinical Autonomic Research, 9(2), 97-101 PMID: 10225614 [PubMed - indexed for MEDLINE] 3. Carew, S., Cooke, J., O'Connor, M., Donnelly, T., Costelloe, A., Sheehy, C., & Lyons, D. (2009). What is the optimal duration of tilt testing for the assessment of patients with suspected postural tachycardia syndrome? Europace. 11(5), 635-637. PubMed 4. El-Sayed, H., & Hainsworth, R. (1996). Salt supplement increases plasma volume and orthostatic tolerance in patients with unexplained syncope. Heart, 75, 134-140. Full Text 5. Engstrom, J. W., & Aminoff, M. J. (1997). Evaluation and treatment of orthostatic hypotension. American Family of Physicians, 56(5). PubMed 6. Fealey, R. (1996). Disorders of sweating. In D. Robertson, P. A. Low, & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 293-299). San Diego, CA: Academic Press. 7. 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. 8. 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. 9. Khurana, R.K., & Setty, A. (1996). The value of the isometric hand-grip test--studies in various autonomic disorders. Clinical Autonomic Research, 6, 211-218. PMID: 8902317 [PubMed - indexed for MEDLINE] 10. Low, P. A. (1993). Postural Orthostatic Tachycardia Syndrome. Department of neurology, Mayo Clinic. 11. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota. 12. Low, P. A. (2003). Seminars in neurology. In K. L. Ross and R. Freeman (Eds.), Testing the Autonomic Nervous System (pp. 407-421). New York, NY: Thieme Medical Publishers, Inc. 13. Robertson, D. (1996). Clinical assessment of autonomic failure. In D. Robertson, P. A. Low, & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 111-115). San Diego, CA: Academic Press. 14. Sandroni, P. (1998, November/December). Testing the autonomic nervous system. In C. B. Berde, & M. C. Rowbotham (Eds.) International Association for the Study of Pain: Technical Corner From IASP Newsletter. http://www.iasp-pain.org/TC98NovDec.html 15. Sandroni, P., Novak, V., Opfer-Gehrking, T. L., Huck, C. A., & Low, P. A. (2000). Mechanisms of blood pressure alterations in response to the Valsalva maneuver in postural tachycardia syndrome. Clinical Autonomic Research, 10(1), 1-5. 16. Stewart, J. M. Heart rate and blood pressure variability. Retrieved March 23, 2002, from Center for Pediatric Hypotension. http://www.nymc.edu/fhp/centers/syncope/heart%20rate%20variability%2 C%20blood%20pressure%20variability%20and%20the%20baroreflex.htm 17. 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.

Autonomic nerve disorders (dysautonomia) refer to disorders of the autonomic nervous system (ANS) function. Dysautonomia is a general term used to describe a breakdown or abnormal function of the ANS. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide-ranging and can include problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, and cognitive impairment. (1. Mayo Clinic, Autonomic Nerve Disorders 2019) Some forms of dysautonomia include; Postural Orthostatic Tachycardia Syndrome (POTS), Orthostatic Hypotension (OH), Orthostatic Intolerance (OI), Neurocarciogenic Syncope (NCS), Pure Autonomic Failure (PAF), Multiple System Atrophy/Shy-Drager syndrome (MSA). There are many advanced tests used for further diagnosis once some form of dysautonomia is detected. The most common tests used are as follows. The tilt table test is often the standard method used for detecting types of dysautonomia. A patient is strapped to a mechanical table, which will tilt them upright at an angle of at least 60 degrees. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of Autonomic Dysfunction is 40 minutes or until they faint, at which point the test is concluded (Carew, Cooke, O'Connor, Donnelly, Costelloe, Sheehy & Lyons, 2009). Some patients are given a drug called isoproterenol through an intravenous line during this test. Isoproterenol is used to test the sensitivity of beta-receptors. People who have POTS with beta-receptor supersensitivity and a hyperadrenergic state will generally have an exacerbation of symptoms due to this drug. Other drugs that are sometimes used in place of isoproterenol include nitroglycerin, edrophonium, adenosine triphosphate, ephedrine and nitroprusside (Grubb & McMann, 2001). The tilt table test may be combined with transcranial doppler ultrasonography. Transcranial doppler ultrasonography is useful in detecting a reduction in cerebral blood flow (Fredman, Biermann, Patel, Uppstrom & Auer, 1995). A number of patients with orthostatic issues will have a decrease in blood flow to the brain upon standing (Low, 2000). This can occur even if the patient does not become hypotensive (Low, 2000). Bowel motility studies are useful in ascertaining the degree of gastrointestinal involvement present (Grubb, Kanjwal & Kosinski, 2006). A catecholamine test is sometimes given to patients suspected of having chemical abnormalities. Testing one's levels of catecholamines and their metabolites is also useful in detecting certain tumors, such as pheochromocytoma. Some patients will have abnormal catecholamine levels, particularly norepinephrine levels. Norepinephrine is the main chemical messenger of the sympathetic nervous system, and is often elevated in certain types of dysautonomia patients. A physician can determine one's total catecholamine levels through analysis of their blood or urine. The blood test is quite simple. The patient will have to lie quietly for a period of time (usually around 30 minutes) before their blood is drawn. Some doctors believe a more accurate reading is gained if an intravenous line is placed in the patient's arm before the resting period. This is because the fear and pain associated with needles may induce a rise in catecholamines that could obscure results. Other doctors will use the 24-hour urine catch method to determine catecholamine levels. The patient is given a container to collect their total urine volume over a 24-hour period. The container is then returned to the physician and catecholamine levels are assayed. The cold pressor test is used to activate the blood pressure control system. The patient places their hand in ice water during this test. The physician will monitor blood pressure changes. This test can be used to localize a sympathetic lesion in the afferent or efferent limb of the baroreceptor reflex arc (Engstrom & Aminoff, 1997). Deep breathing/Paced respirations are tests that evaluate autonomic function by measuring heart rate responses to controlled breathing. Electromyography (EMG) is sometimes used to test the electrical activity of nerves and muscles. A needle electrode(s) is inserted through the skin into the muscle. The measured muscle response to nervous stimulation can detect nerve or muscle disorders. A nerve conduction study may be given concurrently with electromyography. During this test, muscles and nerves are stimulated with small bursts of electricity to determine if they are functioning in a normal manner. The Hand-grip test is a simple and non-invasive test of sympathetic function. Some physicians feel its sensitivity and specificity compare favorably with the tilt table test (Khurana & Setty, 1996). During this test, a patient squeezes a hand-grip until their arm is fatigued. Those with autonomic dysfunction may have an excessive diastolic blood pressure response to this test. Magnetic resonance imaging (MRI)/(MRA) can be used to diagnose some conditions thought to be associated with autonomic dysfunction, such as tumors, Chiari, cervical stenosis or the nutcracker phenomenon. This test encompasses a powerful magnet, low-intensity radio waves, and computer technology. The patient lies still inside the magnet. The magnetic field and different radio frequencies allow a specialized computer to generate detailed images of the inside of the body. The Stand-Up MRI may lead to interesting findings in POTS patients. Microneurography is sometimes used to record traffic from the peripheral nerves. A small needle is placed into a nerve in the leg. Physicians can then measure nerve signals traveling from the brain to the blood vessels. Some POTS patients have nerve damage in their legs (Low, 2000).. Sweat tests such as the thermoregulatory, resting sweat output and the quantitative sudomotor axon reflex are sometimes given to patients to determine if they are sweating appropriately. Many people with forms of dysautonomia will have impaired sweating abilities. Some patients report inappropriate sweating, including night sweats. During the thermoregulatory sweat test, the patient wears a disposable bathing suit and an orange powder is applied to the skin. The patient is then placed in a hot environment to induce sweating. The orange powder will turn purple where the patient sweats. In this way, physicians can determine if the patient has abnormal sweating patterns. A small battery operated current may be used to stimulate the sweat glands directly during the resting sweat output test. The quantitative sudomotor axon reflex test (QSART) is used to determine sweat volume and latency of response. It can also be used to test for postganglionic lesions (Fealey, 1996, p. 297). A reduced or absent sweat response indicates postganglionic sympathetic sudomotor failure. Used in conjunction with the thermoregulatory sweat test, QSART can differentiate a pre- from the postganglionic lesion (Low, 2003, 407-421). Some patients may be given a 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). One study performed by researchers at the Mayo Clinic showed that 28.9% of POTS patients excreted less than 100 mEq in 24 hours and 66.4% excreted less than 150 mEq in 24 hours. These researchers concluded that an important first step in the assessment and treatment of POTS is to determine the patient's volume status and institute salt and fluid replacement in those with hypovolemia (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). A study of neurocardiogenic patients noted that those with a urinary sodium excretion <170 mmol/24 hrs. were more likely to have reduced plasma volume (El-Sayed & Hainsworth, 1996). These patients responded well to salt loading. A patient may also be given a test to determine total red cell mass and plasma volume. Hypovolemia is sometimes found in conjunction with POTS. Plasma volume may be reduced or red cell mass may be reduced in the POTS patient (Low, 1993). Another test that is sometimes used to determine autonomic dysfunction is the Valsalva maneuver. This is a test of baroreflex responsiveness. A physician will have the patient blow into a tube while observing heart rate and blood pressure changes. Impaired baroreflex appears to be characteristic of moderate to severe forms of dysautonomia (Stewart, 2002). Patients may have an excessive blood pressure increment after cessation of the maneuver that is sometimes associated with headache (Sandroni, Novak, Opfer-Gehrking, Huck & Low, 2000). Some researchers report normal heart rate responses during the maneuver and conclude that the assessment of heart rate responses during this test does not contribute to the diagnosis of POTS (Braune, Wrocklage, Schulte-Monting, Schnitzer & Lucking, 1999). A Patient may be given various tests to determine how dysautonomia is affecting their heart. Sinus tachycardia commonly occurs in those with dysautonomia. A patient may be asked to wear a Holter monitor to determine if their heart is functioning correctly. This device allows physicians to record the heart's activity over an extended period of time (usually 24 hours). Electrodes are placed at various locations on the patient's chest. These electrodes are attached to a small portable recorder. A patient may be asked to keep a written journal of any symptoms they experience while wearing the Holter monitor. Irregular heart rhythms are recorded and then evaluated by a physician. Endless-loop recorders or event recorders are sometimes used instead of Holter monitors. These recorders are smaller and can be worn for months at a time. Patients will press a button after experiencing symptoms such as tachycardia or fainting. An ECG of the event will be recorded and transmitted via telephone for a physician to access. A stress test can be used to determine how exercise might affect the dysautonomia patient. The patient walks on a treadmill until a target heart rate is reached. The test is ceased if the patient becomes exhausted or develops complications. The heart's electrical activity is recorded while the patient exercises. Sometimes an echocardiogram will be performed along with the stress test. An echocardiogram is an ultrasound of the heart. This test helps physicians identify abnormalities in the heart's structure and function. The above are only some of the tests that may be given to a patient suspected of having autonomic dysregulation. It is important for patients to ask their physician if they should discontinue their medication before taking specific tests. Some medications that have been reported to significantly affect autonomic testing results include chlorpromazine, thioridazine, tricyclic antidepressants, bupropion, mirtazapine, venlafaxine, clonidine, alpha blockers, beta blockers, calcium channel blockers, opiates and topical capsaicin (Sandroni, 1998). A patient taking medication to lessen symptoms will present with decreased symptoms upon testing. A patient should always consult their physician before discontinuing any medication. Resources 1. Mayo Clinic, Autonomic Nerve Disorders, Full Text Link 2. Braune, S., Wrocklage, C., Schulte-Monting, J., Schnitzer, R., & Lucking, C. H. (1999). Diagnosis of tachycardia syndromes associated with orthostatic symptoms. Clinical Autonomic Research, 9(2), 97-101 PMID: 10225614 [PubMed - indexed for MEDLINE] 3. Carew, S., Cooke, J., O'Connor, M., Donnelly, T., Costelloe, A., Sheehy, C., & Lyons, D. (2009). What is the optimal duration of tilt testing for the assessment of patients with suspected postural tachycardia syndrome? Europace. 11(5), 635-637. PubMed 4. El-Sayed, H., & Hainsworth, R. (1996). Salt supplement increases plasma volume and orthostatic tolerance in patients with unexplained syncope. Heart, 75, 134-140. Full Text 5. Engstrom, J. W., & Aminoff, M. J. (1997). Evaluation and treatment of orthostatic hypotension. American Family of Physicians, 56(5). PubMed 6. Fealey, R. (1996). Disorders of sweating. In D. Robertson, P. A. Low, & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 293-299). San Diego, CA: Academic Press. 7. 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. 8. 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. 9. Khurana, R.K., & Setty, A. (1996). The value of the isometric hand-grip test--studies in various autonomic disorders. Clinical Autonomic Research, 6, 211-218. PMID: 8902317 [PubMed - indexed for MEDLINE] 10. Low, P. A. (1993). Postural Orthostatic Tachycardia Syndrome. Department of neurology, Mayo Clinic. 11. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota. 12. Low, P. A. (2003). Seminars in neurology. In K. L. Ross and R. Freeman (Eds.), Testing the Autonomic Nervous System (pp. 407-421). New York, NY: Thieme Medical Publishers, Inc. 13. Robertson, D. (1996). Clinical assessment of autonomic failure. In D. Robertson, P. A. Low, & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 111-115). San Diego, CA: Academic Press. 14. Sandroni, P. (1998, November/December). Testing the autonomic nervous system. In C. B. Berde, & M. C. Rowbotham (Eds.) International Association for the Study of Pain: Technical Corner From IASP Newsletter. http://www.iasp-pain.org/TC98NovDec.html 15. Sandroni, P., Novak, V., Opfer-Gehrking, T. L., Huck, C. A., & Low, P. A. (2000). Mechanisms of blood pressure alterations in response to the Valsalva maneuver in postural tachycardia syndrome. Clinical Autonomic Research, 10(1), 1-5. 16. Stewart, J. M. Heart rate and blood pressure variability. Retrieved March 23, 2002, from Center for Pediatric Hypotension. http://www.nymc.edu/fhp/centers/syncope/heart%20rate%20variability%2 C%20blood%20pressure%20variability%20and%20the%20baroreflex.htm 17. 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.

Assistant Professor of Pediatrics Mailing address: P.O. Box 208064 New Haven, CT 06520-8064

Editor's note: Below is a story submitted by a member for our site. If you would like to share your story of the caregiving experience, please email webmaster@dinet.org ********************************************************************************** Rose's Story I have been a caregiver and I have had caregiving for myself. The experience from both sides has required effective communication. When I was younger, my mom developed crippling Rheumatoid Arthritis and terminal lung cancer. I was the closest to my mom both emotionally and physically so it was a natural fit for my role as caregiver to grow with her illness and her need for help. My mother was a fiercely proud and independent woman. She was ahead of her time when it came to teaching herself how to use power tools and to build and fix things around our house. Growing up in the 60's, women her age still wore dresses in public, never pants, and men still took care of the "heavy" work. My mother wore her dresses alright, but I remember her doing that while she swung a sledgehammer and took down a wall in an upstair's bedroom. So when she started to lose the use of her hands and have trouble walking, she was angry. She skipped all the other parts of adjusting to chronic illness and stuck herself on the anger step and wouldn't let go. Her independence, pride and now anger, made her a very difficult patient to care for. She was angry at herself when she needed help and angry with me for offering it. My patience and empathy were tried on a daily basis. I'm not proud looking back on this, but I have to admit that there were times when I would yell at her for being so ungrateful and even threaten her from time to time that I would leave if she really didn't want my help. I was hurt that no matter what I did, she seemed not to like it. I'd work all day to cook a meal I knew she loved and she would refuse to eat more than a bite when suppertime came. I started to really resent her attitude, the amount of work I had to do, and above all, the terrible treatment I felt she was giving me without any good reason. After a particularly bad day together, my mom's friend stopped by to see her and could see that I was on the edge of tears. I explained to her what was going on and what I was feeling. After about 15 minutes of listening to me complain, she spoke up. She asked why I was doing this and I said: "she's my mom". She said "so? You do have a sister? She has sisters herself? There are options. So, why are YOU doing this?" I said "I love her. She's my best friend and I want her to feel good. I want our relationship to be like it was" She said "So does she but that's impossible isn't it? She's not the same and can't be to you what she was before. She needs you to help her find her way to live in this body - the one she has now. You keep trying to "help her" by trying to find ways for her to do what she did before. Maybe if you tried to help her find ways to do new things that she CAN do, she would be happier. She would have some independence again." I was stunned because I had no idea I was doing that until she said it to me. From that day until the day my mom died, we did things differently. We adjusted as we needed to and realigned activities as we went. Instead of my spending the day cooking her favorite meal and placing it in front of her. We cooked together. I handled the knives or the things that required dexterity that she didn't have, but I gave the other things that she could still do. I bought her a high stool so she could reach the sink again comfortably. My mom's other passion was gardening. So instead of doing the gardens for her. I started bringing her outside and getting her comfortable at the potting bench. She did all the potting. She prepped all the bulbs. She was happy again because she felt useful, she had pride in her work and she had independence. We went from my caring for her to our caring for each other again. When I became ill 25 years later and required caregivers of my own on and off. I sat my husband and my daughter down and told them this story. We are able to skip the angry days (mostly) and bad temperament They are able to help me in the ways I really needed help. And we are able to care for each other the way a family should. I hope my story can help patients find the ways to communicate to their caregivers what will help them most and I hope it will help caregivers find the ways to listen and be able to help each patient adjust to their new life.

Editor's note: Below is a story submitted by a member for our site. If you would like to share your story of the caregiving experience, please email webmaster@dinet.org ********************************************************************************** Rose's Story I have been a caregiver and I have had caregiving for myself. The experience from both sides has required effective communication. When I was younger, my mom developed crippling Rheumatoid Arthritis and terminal lung cancer. I was the closest to my mom both emotionally and physically so it was a natural fit for my role as caregiver to grow with her illness and her need for help. My mother was a fiercely proud and independent woman. She was ahead of her time when it came to teaching herself how to use power tools and to build and fix things around our house. Growing up in the 60's, women her age still wore dresses in public, never pants, and men still took care of the "heavy" work. My mother wore her dresses alright, but I remember her doing that while she swung a sledgehammer and took down a wall in an upstair's bedroom. So when she started to lose the use of her hands and have trouble walking, she was angry. She skipped all the other parts of adjusting to chronic illness and stuck herself on the anger step and wouldn't let go. Her independence, pride and now anger, made her a very difficult patient to care for. She was angry at herself when she needed help and angry with me for offering it. My patience and empathy were tried on a daily basis. I'm not proud looking back on this, but I have to admit that there were times when I would yell at her for being so ungrateful and even threaten her from time to time that I would leave if she really didn't want my help. I was hurt that no matter what I did, she seemed not to like it. I'd work all day to cook a meal I knew she loved and she would refuse to eat more than a bite when suppertime came. I started to really resent her attitude, the amount of work I had to do, and above all, the terrible treatment I felt she was giving me without any good reason. After a particularly bad day together, my mom's friend stopped by to see her and could see that I was on the edge of tears. I explained to her what was going on and what I was feeling. After about 15 minutes of listening to me complain, she spoke up. She asked why I was doing this and I said: "she's my mom". She said "so? You do have a sister? She has sisters herself? There are options. So, why are YOU doing this?" I said "I love her. She's my best friend and I want her to feel good. I want our relationship to be like it was" She said "So does she but that's impossible isn't it? She's not the same and can't be to you what she was before. She needs you to help her find her way to live in this body - the one she has now. You keep trying to "help her" by trying to find ways for her to do what she did before. Maybe if you tried to help her find ways to do new things that she CAN do, she would be happier. She would have some independence again." I was stunned because I had no idea I was doing that until she said it to me. From that day until the day my mom died, we did things differently. We adjusted as we needed to and realigned activities as we went. Instead of my spending the day cooking her favorite meal and placing it in front of her. We cooked together. I handled the knives or the things that required dexterity that she didn't have, but I gave the other things that she could still do. I bought her a high stool so she could reach the sink again comfortably. My mom's other passion was gardening. So instead of doing the gardens for her. I started bringing her outside and getting her comfortable at the potting bench. She did all the potting. She prepped all the bulbs. She was happy again because she felt useful, she had pride in her work and she had independence. We went from my caring for her to our caring for each other again. When I became ill 25 years later and required caregivers of my own on and off. I sat my husband and my daughter down and told them this story. We are able to skip the angry days (mostly) and bad temperament They are able to help me in the ways I really needed help. And we are able to care for each other the way a family should. I hope my story can help patients find the ways to communicate to their caregivers what will help them most and I hope it will help caregivers find the ways to listen and be able to help each patient adjust to their new life.

All of Us Research Program - Champion Partnership. The National Institute of Health has an ambitious research program underway to gather health information from 1 million or more people in the U.S. The program focuses on Precision Medicine, which means (in a severely condensed definition), not all people are created the same, so why should the approach to our health be the same? Why is that important to dysautonomia patients? Dysautonomia is a rare disorder that encompasses many variables - which type of dysautonomia? Is it a primary disorder or secondary to MS or another illness? Are you a man or a woman? What age are you? All of these things impact the way dysautonomia effects us and how we are treated. Yet, most medical treatments are based on the average response the average amount of people have to the average amount of symptoms. Precision medicine seeks to change that by having enough data stored to allow physicians and researchers to gather very specific information from people with very specific criteria. So, if a doctor is treating a man in his 70's with dysautonomia as a secondary illness to Parkinson's disease, the treatment plan won't be based on data derived from a study that was collected from 25 - 35 y.o. women with POTS contracted after flu, mono, and other viral illnesses. To join All of Us and to find out more about the program, please visit their site https://www.joinallofus.org/en or contact DINET at webmaster@dinet.org if you have questions about DINET's involvement. All of Us Thank You for Champions_DINET.pdf

All of Us Research Program - Champion Partnership. The National Institute of Health has an ambitious research program underway to gather health information from 1 million or more people in the U.S. The program focuses on Precision Medicine, which means (in a severely condensed definition), not all people are created the same, so why should the approach to our health be the same? Why is that important to dysautonomia patients? Dysautonomia is a rare disorder that encompasses many variables - which type of dysautonomia? Is it a primary disorder or secondary to MS or another illness? Are you a man or a woman? What age are you? All of these things impact the way dysautonomia effects us and how we are treated. Yet, most medical treatments are based on the average response the average amount of people have to the average amount of symptoms. Precision medicine seeks to change that by having enough data stored to allow physicians and researchers to gather very specific information from people with very specific criteria. So, if a doctor is treating a man in his 70's with dysautonomia as a secondary illness to Parkinson's disease, the treatment plan won't be based on data derived from a study that was collected from 25 - 35 y.o. women with POTS contracted after flu, mono, and other viral illnesses. To join All of Us and to find out more about the program, please visit their site https://www.joinallofus.org/en or contact DINET at webmaster@dinet.org if you have questions about DINET's involvement. All of Us Thank You for Champions_DINET.pdf

October is Dysautonomia Awareness Month NOTE: If you are a part of a support group or have contacts within the medical community and would like to receive printed materials as handouts or information to pass on please contact webmaster@dinet.org We will do our best to accommodate all requests. We support your efforts! Here is what DINET has going on this month and going forward: NIH All of Us Research Program - Champion Partnership. The National Institute of Health has an ambitious research program underway to gather health information from 1 million or more people in the U.S. The program focuses on Precision Medicine principles which mean (in a severely condensed definition), not all people are created equal so not all treatments to their health can be treated equally. Why is that important to dysautonomia patients? Dysautonomia is a rare disorder that encompasses many variables - which type of dysautonomia? Is it a primary disorder or secondary to MS or another illness? Are you a man or a woman? What age are you? All of these things impact the way dysautonomia effects us and how we are treated. Yet, most medical treatments are based on the average response the average amount of people have to the average amount of symptoms. Precision medicine seeks to change that by having enough data stored to allow physicians and researchers to gather very specific information from people with very specific criteria. So, if a doctor is treating a man in his 70's with dysautonomia as a secondary illness to Parkinson's disease, the treatment plan won't be based on data derived from a study that was collected from 25 - 35 y.o. women with POTS contracted after flu, mono, and other viral illnesses. This is a very simplistic description of the program and its benefits, so please read more on our information page to learn more. DINET's Pilot Survey - Questionnaire "Adolescents, Adults and Older Adults with Dysautonomia" - DINET has been exploring the impact of age on dysautonomia symptoms and treatment. Currently, most information on dysautonomia references POTS and refers to women in their child-bearing years. We hear regularly from members who tell us that many of the doctors they see do not recognize the illness name dysautonomia and only recognize POTS, then report being told they were "too old" for that because POTS is for "young women". The same is true from male patients who are dismissed or told they can't possibly have POTS because they are male. Also true is that very little is recorded or known about what happens to dysautonomia patients as they age. DINET's questionnaire seeks to better inform DINET about our members and to identify for us internally whether more research might be warranted. The generous participation of our members this past summer will go a long way to help answer these questions and identify our next steps. The questionnaire is currently in process and review by Miami University with Chelsea Goldstein presiding & representing DINET. for more information, please contact Chelsea Goldstein at chelsea.goldstein@dinet.org Facebook Live Meetings - DINET is a 100% volunteer organization and our volunteers are 100% patients and caregivers (mostly patients) - we are also a 501 (c)(3) nonprofit, which means we don't have unlimited funds and we don't always have much more energy or healthy days than you do. So we can't possibly travel around the country and the world, attending face to face meetings and doing presentations about dysautonomia in all the ways we would love to. So we are doing the next best thing - using digital and social media to get the word out and provide support. Through Facebook Live Meetings, we can attend support groups around the country providing information about the illness, and sharing our resources with the patients in the groups, the hospital where they are frequently held and the medical personnel usually in attendance. This month: Wentworth-Douglas Hospital, Dover, NH If you would like a DINET representative to attend your support group meeting or a group event for patients, caregivers or others helping or living with the dysautonomia community, please contact webmaster@dinet.org Support and Resources - DINET has packets of information we can provide for your group meetings, your physician's office or your organization. Please contact webmaster@dinet.org and let us know what you need and to discuss what we can do to help. What our members are doing: Seacoast POTS Support group: The very energetic group has accomplished much in the name of dysautonomia awareness this year. Recently, their state of New Hampshire received a declaration from their Governor for October Dysautonomia Awareness Month. And in October, business windows in the downtown area of Dover, NH will be lit blue, in honor of the month. And on October 27th, the Memorial Bridge in the City of Portsmouth, NH (seen at left) will be lit up to encourage awareness. Congratulations to the group and much thanks for doing all that you do! Member: Pistol writes: "I hold classes about dysautonomia at our local college, share new studies with my docs and work with local ER's and PCP's to educate them about POTS. I am also in the process of starting a local support group for dysautonomia sufferers." Member: Wintersown writes: "I am doing a fundraiser on my FB page and I will also be sharing info links about symptoms, management and diagnosis every day for October. Education is vital to ourselves as well as our friends, families, caregivers and especially our doctors. If you can get one doctor or nurse to understand the symptoms or even that we are to be believed you will have made a positive contribution." "One of the best things that came from doing advocacy is that it has had a wonderful effect on my management and care. My doctors know I understand the condition and how I stress the necessity to establish unique and individual management programs, especially as we age. We are all unique and need care tailored to us, not some one-size fits all treatment. Let your doctors know what you are learning and doing, what info you are sharing to help others. Doctors are usually impressed with patient advocacy and it will improve how they treat you all around. Never give up, never surrender." Have something you are working on to bring awareness? Please let us know webmaster@dinet.org

Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int he psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003 Return to Table of Contents

Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int he psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003 Return to Table of Contents

Dysautonomia through the ages by Chelsea Goldstein Self-care, why it deserves a spot at the top of your to-do list by Amy Keys Eating disorders and dysautonomia by Mona Hussein Meet the Member: Caryn's Story by Chelsea Goldstein I've changed my mind. I don't want to accept "acceptance" by Trudi Davidoff How older chronically ill folks can help younger ones:; Age-specific tools for managing illness by Missy Milton Medical Q & A - Your questions answered by DINET's Medical Advisors Updated Research Information for Dysautonomia and Related Chronic Illnesses Updated Open Recruitment Studies SUMMER PROMO from BANANABAG ORAL SOLUTIONS https://www.bananabagdrink.com/discount/SUMMER10 BananaBag is offering DINET members 10% off a ONE TIME purchase. Use promo code SUMMER10

Dysautonomia through the ages by Chelsea Goldstein Self-care, why it deserves a spot at the top of your to-do list by Amy Keys Eating disorders and dysautonomia by Mona Hussein Meet the Member: Caryn's Story by Chelsea Goldstein I've changed my mind. I don't want to accept "acceptance" by Trudi Davidoff How older chronically ill folks can help younger ones:; Age-specific tools for managing illness by Missy Milton Medical Q & A - Your questions answered by DINET's Medical Advisors Updated Research Information for Dysautonomia and Related Chronic Illnesses Updated Open Recruitment Studies SUMMER PROMO from BANANABAG ORAL SOLUTIONS https://www.bananabagdrink.com/discount/SUMMER10 BananaBag is offering DINET members 10% off a ONE TIME purchase. Use promo code SUMMER10

We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Q: Is there any connection between autonomic dysfunction occurring after the gallbladder is removed. I’ve noticed at several of my support groups that there are a number of young people who have had this procedure performed and then developed dysautonomia following it. Submitted by Michael W, Facebook Follower A: I agree! that is a very astute observation! I have also seen it. I don’t have a good explanation but I think the delayed gallbladder emptying on Hida scan is probably related with joint hypermobility spectrum (similar to delayed gastric emptying) I am not convinced that biliary dyskinesia commonly reported essentially means a pathology. These are my personal observations for the last several years. Only 3 days ago I asked my students to take it up as a research project. Hope to get it published eventually. My answer may not be supported by peer-reviewed research. Amer Suleman, MD, FSCAI, FHRS The Heartbeat Clinic Adjunct Professor, UT Dallas Q: I have been diagnosed with POTS and autonomic dysfunction and recently IBS. My question is since gastric issues are common for people with dysautonomia, are disorders like IBS, colitis, etc just symptoms of dysautonomia or are they separate illnesses that develop because of dysautonomia? Thank you for your concern. Submitted by Cathy, DINET member A: The short answer is that it is not known and likely variable in different patients. Patients can absolutely have colitis of various causes that have nothing to do with autonomic dysfunction. For example, there is no reason why someone with POTS cannot also be unlucky enough to have ulcerative colitis. I do suspect, however, that in some patients that have gastric emptying problems, that there may be a link. At this point in time, the treatments are largely symptomatic. Hopefully, that will change over time as our understanding of the mechanisms of illness improves. Dr. Satish R. Raj MD, MSCI, FPCPC Associate Professor of Cardiac Sciences Libin Cardiovascular Institute of Alberta University of Calgary | Vanderbilt University Q: When I was first diagnosed with POTS, I had syncope or presyncope episodes 5 or more times per day. After working with a cardiac rehab program prescribed by my doctor, I have been able to reduce my episodes to 2 - 3 per week. They taught me all about hydration, breathing from the diaphragm and learning the warning signs and not to panic when I feel an episode coming on. All of it helped me greatly. I’m wondering if there are any rehab programs, similar to pulmonary or cardiac rehab, for dysautonomia patients to learn how to manage and live better with this illness? Submitted by Joann, Facebook Follower A: There are some rehabilitation programs that have adopted a version of the Levine exercise protocol. Locally, the cardiac rehabilitation program has created a "POTS program", and I think that other places do have something similar. However, I do not know of a comprehensive program. The Mayo Clinic does have a Pediatric program that is a multi-disciplinary, intensive 3-week outpatient program that is focussed on improving the functioning of these children (and getting them back into school). Often patients learn how to manage and live better with their illness from other patients, through patient advocacy groups, online groups and sometimes local support groups. Dr. Satish R. Raj MD, MSCI, FPCPC Associate Professor of Cardiac Sciences Libin Cardiovascular Institute of Alberta University of Calgary | Vanderbilt University Q: Can autonomic dysfunction cause skin issues like eczema, heat rashes, psoriasis, etc.? Thank you, Submitted by Evelyn, DINET Member A: No, autonomic disorders typically do not cause eczema, heat rashes or psoriasis. However, psoriasis and some other skin conditions are autoimmune disorders, and autonomic dysfunction can occur secondary to autoimmune disorders. Therefore, individuals with autoimmune disorders, which may include skin manifestations, can have co-morbid autonomic disorders due to a shared pathophysiology rooted in autoimmunity. Svetlana Blitshteyn, MD Director and Founder of Dysautonomia Clinic Clinical Assistant Professor of Neurology University at Buffalo School of Medicine and Biomedical Science Return to Table of Contents

We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Q: Is there any connection between autonomic dysfunction occurring after the gallbladder is removed. I’ve noticed at several of my support groups that there are a number of young people who have had this procedure performed and then developed dysautonomia following it. Submitted by Michael W, Facebook Follower A: I agree! that is a very astute observation! I have also seen it. I don’t have a good explanation but I think the delayed gallbladder emptying on Hida scan is probably related with joint hypermobility spectrum (similar to delayed gastric emptying) I am not convinced that biliary dyskinesia commonly reported essentially means a pathology. These are my personal observations for the last several years. Only 3 days ago I asked my students to take it up as a research project. Hope to get it published eventually. My answer may not be supported by peer-reviewed research. Amer Suleman, MD, FSCAI, FHRS The Heartbeat Clinic Adjunct Professor, UT Dallas Q: I have been diagnosed with POTS and autonomic dysfunction and recently IBS. My question is since gastric issues are common for people with dysautonomia, are disorders like IBS, colitis, etc just symptoms of dysautonomia or are they separate illnesses that develop because of dysautonomia? Thank you for your concern. Submitted by Cathy, DINET member A: The short answer is that it is not known and likely variable in different patients. Patients can absolutely have colitis of various causes that have nothing to do with autonomic dysfunction. For example, there is no reason why someone with POTS cannot also be unlucky enough to have ulcerative colitis. I do suspect, however, that in some patients that have gastric emptying problems, that there may be a link. At this point in time, the treatments are largely symptomatic. Hopefully, that will change over time as our understanding of the mechanisms of illness improves. Dr. Satish R. Raj MD, MSCI, FPCPC Associate Professor of Cardiac Sciences Libin Cardiovascular Institute of Alberta University of Calgary | Vanderbilt University Q: When I was first diagnosed with POTS, I had syncope or presyncope episodes 5 or more times per day. After working with a cardiac rehab program prescribed by my doctor, I have been able to reduce my episodes to 2 - 3 per week. They taught me all about hydration, breathing from the diaphragm and learning the warning signs and not to panic when I feel an episode coming on. All of it helped me greatly. I’m wondering if there are any rehab programs, similar to pulmonary or cardiac rehab, for dysautonomia patients to learn how to manage and live better with this illness? Submitted by Joann, Facebook Follower A: There are some rehabilitation programs that have adopted a version of the Levine exercise protocol. Locally, the cardiac rehabilitation program has created a "POTS program", and I think that other places do have something similar. However, I do not know of a comprehensive program. The Mayo Clinic does have a Pediatric program that is a multi-disciplinary, intensive 3-week outpatient program that is focussed on improving the functioning of these children (and getting them back into school). Often patients learn how to manage and live better with their illness from other patients, through patient advocacy groups, online groups and sometimes local support groups. Dr. Satish R. Raj MD, MSCI, FPCPC Associate Professor of Cardiac Sciences Libin Cardiovascular Institute of Alberta University of Calgary | Vanderbilt University Q: Can autonomic dysfunction cause skin issues like eczema, heat rashes, psoriasis, etc.? Thank you, Submitted by Evelyn, DINET Member A: No, autonomic disorders typically do not cause eczema, heat rashes or psoriasis. However, psoriasis and some other skin conditions are autoimmune disorders, and autonomic dysfunction can occur secondary to autoimmune disorders. Therefore, individuals with autoimmune disorders, which may include skin manifestations, can have co-morbid autonomic disorders due to a shared pathophysiology rooted in autoimmunity. Svetlana Blitshteyn, MD Director and Founder of Dysautonomia Clinic Clinical Assistant Professor of Neurology University at Buffalo School of Medicine and Biomedical Science Return to Table of Contents

The term self-care is becoming trendy, which means you may have heard someone talk about it at some point. What is it though? Put simply, it’s caring for yourself, just like it sounds. So many people spend the whole day making sure everyone around them is taken care of while continually bumping their own care down lower and lower on the to-do list. Essentially, the more time put towards self-care, the longer you can go between burnouts. I used to work for the State Police, and under special circumstances, troopers could provide a gas transfer to a citizen. You see, if the trooper had not made sure that his or her own tank was full first, then they would be completely useless in helping the citizen in need. To be the very best mom, sister, daughter, wife, employee, and friend, it’s important to take time to fill up your tank too. Otherwise, there is nothing to give to others. Besides having more to give to others, there are health benefits too. Let’s brush up quickly about dysautonomia, which is dysfunction of the autonomic nervous system. Within the autonomic nervous system are two parts, the parasympathetic nervous system, and the sympathetic nervous system. Those of us who suffer from different forms of dysautonomia have a broad goal of activating the parasympathetic nervous system in a healthy way. In fact, research suggests that plenty of self-care activities can enable your parasympathetic nervous system (PNS). Activating your PNS places your body into a more restful and rejuvenating state. This can strengthen your immune system as well as make healthy strides towards calming the dysfunction of the autonomic nervous system. Therefore, more self-care, possibly fewer dysautonomia flares, as well as fewer colds and cases of flu interrupting your year. Self-care can be difficult at times because it means saying “no.” It means saying you can’t fit in that other meeting and take on that additional project. It means you can’t head up every club and run all the fundraisers. At the end of the day, you need time for your health- physically, emotionally, and spiritually. This may look different to different people, but it’s important to learn which activities help to refocus you and ground you, and what invigorates you and rejuvenates you. Here are a few ideas that might be a good fit for you, depending on your current needs. As always, check with your doctor before starting new physical activities. ● Plant a garden and spend time in it. Get your hands dirty, literally. ● Rearrange your furniture. Your mind will continue to be stimulated until you are used to the new setup. ● Learn how to make a budget that works. ● Start journaling. ● Find a book that interests you and then make time to read it. ● Learn about your local history. ● Revisit an old hobby. ● Learn to sew, cross stitch, crochet or quilt. ● Tidy up a small space. Organizing your space can organize your mind. ● Play a new board game. ● Visit a bookstore. ● Read a magazine. ● Do a puzzle. ● Write a poem. ● Make achievable daily goals. ● Create an inspirational collage. ● Unfollow toxic friends on social media. ● Try out a new exercise class. ● Go to bed early. ● Go for a bike ride. ● Spend time with your pets. ● Do something kind for someone else. ● Bake something for fun and share with a friend. ● Take a bubble bath. ● Buy yourself flowers. ● Visit an antique shop. ● Try a new hairstyle. ● Wrap up in a cozy blanket and drink tea. ● Look at the stars. ● Light a candle. Schedule some time for YOU and try out some of these activities. Make time for your mind, your body, and your soul. You deserve it! References: http://www.thelawofattraction.com/self-care-tips/ https://www.developgoodhabits.com/self-care-ideas/ Return to Table of Contents

The term self-care is becoming trendy, which means you may have heard someone talk about it at some point. What is it though? Put simply, it’s caring for yourself, just like it sounds. So many people spend the whole day making sure everyone around them is taken care of while continually bumping their own care down lower and lower on the to-do list. Essentially, the more time put towards self-care, the longer you can go between burnouts. I used to work for the State Police, and under special circumstances, troopers could provide a gas transfer to a citizen. You see, if the trooper had not made sure that his or her own tank was full first, then they would be completely useless in helping the citizen in need. To be the very best mom, sister, daughter, wife, employee, and friend, it’s important to take time to fill up your tank too. Otherwise, there is nothing to give to others. Besides having more to give to others, there are health benefits too. Let’s brush up quickly about dysautonomia, which is dysfunction of the autonomic nervous system. Within the autonomic nervous system are two parts, the parasympathetic nervous system, and the sympathetic nervous system. Those of us who suffer from different forms of dysautonomia have a broad goal of activating the parasympathetic nervous system in a healthy way. In fact, research suggests that plenty of self-care activities can enable your parasympathetic nervous system (PNS). Activating your PNS places your body into a more restful and rejuvenating state. This can strengthen your immune system as well as make healthy strides towards calming the dysfunction of the autonomic nervous system. Therefore, more self-care, possibly fewer dysautonomia flares, as well as fewer colds and cases of flu interrupting your year. Self-care can be difficult at times because it means saying “no.” It means saying you can’t fit in that other meeting and take on that additional project. It means you can’t head up every club and run all the fundraisers. At the end of the day, you need time for your health- physically, emotionally, and spiritually. This may look different to different people, but it’s important to learn which activities help to refocus you and ground you, and what invigorates you and rejuvenates you. Here are a few ideas that might be a good fit for you, depending on your current needs. As always, check with your doctor before starting new physical activities. ● Plant a garden and spend time in it. Get your hands dirty, literally. ● Rearrange your furniture. Your mind will continue to be stimulated until you are used to the new setup. ● Learn how to make a budget that works. ● Start journaling. ● Find a book that interests you and then make time to read it. ● Learn about your local history. ● Revisit an old hobby. ● Learn to sew, cross stitch, crochet or quilt. ● Tidy up a small space. Organizing your space can organize your mind. ● Play a new board game. ● Visit a bookstore. ● Read a magazine. ● Do a puzzle. ● Write a poem. ● Make achievable daily goals. ● Create an inspirational collage. ● Unfollow toxic friends on social media. ● Try out a new exercise class. ● Go to bed early. ● Go for a bike ride. ● Spend time with your pets. ● Do something kind for someone else. ● Bake something for fun and share with a friend. ● Take a bubble bath. ● Buy yourself flowers. ● Visit an antique shop. ● Try a new hairstyle. ● Wrap up in a cozy blanket and drink tea. ● Look at the stars. ● Light a candle. Schedule some time for YOU and try out some of these activities. Make time for your mind, your body, and your soul. You deserve it! References: http://www.thelawofattraction.com/self-care-tips/ https://www.developgoodhabits.com/self-care-ideas/ Return to Table of Contents

Dysautonomia commonly develops as a complication of a primary illness or is seen in patients with multiple disorders. These scenarios add a layer of complexity to a patient’s diagnostic journey, as well as their treatment plan. When one of those illnesses is an eating disorder, the complexities can be significantly magnified. Eating disorders, which include bulimia nervosa and anorexia nervosa, are defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as follows: "Feeding and eating disorders are characterized by a persistent disturbance of eating or eating-related behavior that results in the altered consumption or absorption of food and that significantly impairs physical health or psychosocial functioning." The lifetime prevalence estimates for bulimia nervosa and anorexia nervosa in US adults are 1.0% and 0.6%, respectively. [1] Members of the dysautonomia community are most likely some of the people additionally affected by these severe conditions. In wading through the medical literature on eating disorders and dysautonomia, several parallels emerged. These parallels can be seen in the demographics of the patient population, as well as in the symptoms both disorders can demonstrate. For instance, both anorexia nervosa [1] and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, are more commonly observed in women and adolescent girls. [2]. Also, anxiety and depression are common in both dysautonomia [3] and eating disorder patients. [1] Further, POTS and other forms of orthostatic intolerance can cause gastrointestinal symptoms, such as nausea and vomiting and severe POTS may interfere with eating. [4] [5] A POTS patient and an eating disorder patient may both have disrupted eating patterns, but the underlying causes and appropriate treatments are very different. Although I did not find specific evidence in the literature of such symptoms misattributed to eating disorders, it is not uncommon for a misdiagnosis of anxiety or other psychiatric illness attributed to POTS. [5] There is also evidence that eating disorders, particularly anorexia nervosa, may cause changes in cardiac function, structure, and rhythm. [6] Children with anorexia and bulimia may exhibit abnormally low blood pressure, slowed heart rates, and high heart rate variability. [7] In the abstract to a 2014 article in Clinical Autonomic Research, Takimoto, et al. reported autonomic abnormalities during tilt-table testing in study participants with anorexia nervosa. [8] Similarly, POTS and other forms of dysautonomia, display hallmark symptoms of high heart rates, abnormal rhythms, and erratic blood pressures. [13] And the irregular response of the autonomic nervous system during the tilt table test is one of the most recognized diagnostic criteria used to confirm a POTS diagnosis. There are conflicting views in the literature about the extent to which cardiac complications explain the fatality rates in anorexia and bulimia and whether such changes are reversible. [7] [9] Further research into these questions is needed, but what is certain is that eating disorders can be dangerous and require serious attention. While most forms of dysautonomia are chronic illnesses, they are not considered life-threatening on their own; rather, they are seriously life-altering and oft-times debilitating. Dysautonomia also requires serious attention and treatment. Stewart writes that it is essential to distinguish between eating disorders and POTS, noting that anorexia nervosa can cause “POTS-like” orthostatic intolerance in its early stages and young women referred for treatment for POTS symptoms may be underweight.[8] The similarities in patient demographics and overlap in symptoms between eating disorders and POTS have the potential to complicate the diagnostic picture further. Patients can have both conditions, of course, which may present additional diagnostic and treatment challenges. An untreated eating disorder might worsen pre-existing orthostatic intolerance. Since poorly managed orthostatic intolerance can cause limitations in many areas of life, such conditions, if unrecognized, could conceivably pose an additional challenge for eating disorder patients in achieving specific functional goals as part of treatment. There remains much to learn about both eating disorders and dysautonomia. Both can have a profound and long-lasting impact on a person’s life and health at an important point in that person’s development. Accurate diagnosis and appropriate treatment are vital. It is important to note that although the focus of this article was on anorexia, bulimia and largely POTS, there are many other eating disorders and dysautonomias. Further, these conditions can occur in people of any gender and at any stage of life. If you or someone you know is dealing with an eating disorder or dysautonomia, please consult a qualified medical professional without delay. Bibliography [1] National Institute of Mental Health, "Health Information: Statistics," November 2017. [Online]. Available: https://www.nimh.nih.gov/health/statistics/eating-disorders.shtml#part_155058. [2] R. Freeman, W. Wieling, F. B. Axelrod, D. G. Benditt, E. Benarroch, I. Biaggioni, W. P. Cheshire, T. Chelimsky, P. Cortelli, C. H. Gibbons, D. S. Goldstein, R. Hainsworth, M. J. Hilz, G. Jacob, H. Kaufmann, J. Jordan, L. A. Lipsitz, B. D. Levine, P. A. Low, C. Mathias, S. R. Raj, D. Robertson, P. Sandroni, I. Schatz, R. Schondorff, J. M. Stewart and J. G. van Dijk, "Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome," Clinical Autonomic Research, no. 12, pp. 69-72, April 2011. [3] J. N. Johnson, K. J. Mack, N. L. Kuntz, C. K. Brands, C. J. Porter and P. R. Fischer, "Postural Orthostatic Tachycardia Syndrome: A Clinical Review," Pediatric Neurology, vol. 42, no. 2, pp. 77-85, February 2010. [4] S. D. Sullivan, J. Hanauer, P. C. Rowe, D. F. Barron, A. Darbari and M. Oliva-Hemker, "Gastrointestinal Symptoms Associated with Orthostatic Intolerance," Journal of Pediatric Gastroenterology and Nutrition, no. 40, pp. 425-428, April 2005. [5] B. P. Grubb, "Postural Tachycardia Syndrome," Circulation, vol. 117, no. 21, pp. 2814-2817, May 2008. [6] M. A. Spaulding-Barclay, J. Stern and P. S. Mehler, "Cardiac changes in anorexia nervosa," Cardiology in the Young, 2016. [7] J.-A. Palma, L. Norcliffe-Kaufmann, C. Fuente-Mora, L. Percival, C. L. Spalink and H. Kaufmann, "Disorders of the Autonomic Nervous System: Autonomic Dysfunction in Pediatric Practice," in Swaiman's Pediatric Neurology, 6th Edition ed., Elsevier, 2017, pp. 1173-1183. [8] J. M. Stewart, "Common Syndromes of Orthostatic Intolerance," Pediatrics, vol. 131, no. 5, pp. 968-980, May 2013. [9] NINDS, "Postural Tachycardia Syndrome Information Page," 18 June 2018. [Online]. Available: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page. [10] Y. Takimoto, K. Yoshiuchi, T. Ishizawa, Y. Yamamoto and A. Akabayashi, "Autonomic dysfunction responses to head-up tilt in anorexia nervosa [Abstract]," Clinical Autonomic Research, vol. 24, no. 4, pp. 175-181, August 2014. [11] K. V. Sachs, B. Harnke, P. S. Mehler and M. J. Krantz, "Cardiovascular complications of anorexia nervosa: A systematic review," International Journal of Eating Disorders, vol. 49, no. 3, pp. 238-248, December 2015. [12] American Psychiatric Association, "Feeding and Eating Disorders," in Diagnostic and Statistical Manual of Mental Disorders, 5th Edition ed., https://doi.org/10.1176/appi.books.9780890425596.dsm10, 2013. [13] Grubb, B.P. & Karas, B. (1999) Clinical disorders of the autonomic nervous system associated with orthostatic intolerance. "Pacing and Clinical Electrophysiology" 22, 798-810 Return to Table of Contents

Dysautonomia commonly develops as a complication of a primary illness or is seen in patients with multiple disorders. These scenarios add a layer of complexity to a patient’s diagnostic journey, as well as their treatment plan. When one of those illnesses is an eating disorder, the complexities can be significantly magnified. Eating disorders, which include bulimia nervosa and anorexia nervosa, are defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as follows: "Feeding and eating disorders are characterized by a persistent disturbance of eating or eating-related behavior that results in the altered consumption or absorption of food and that significantly impairs physical health or psychosocial functioning." The lifetime prevalence estimates for bulimia nervosa and anorexia nervosa in US adults are 1.0% and 0.6%, respectively. [1] Members of the dysautonomia community are most likely some of the people additionally affected by these severe conditions. In wading through the medical literature on eating disorders and dysautonomia, several parallels emerged. These parallels can be seen in the demographics of the patient population, as well as in the symptoms both disorders can demonstrate. For instance, both anorexia nervosa [1] and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, are more commonly observed in women and adolescent girls. [2]. Also, anxiety and depression are common in both dysautonomia [3] and eating disorder patients. [1] Further, POTS and other forms of orthostatic intolerance can cause gastrointestinal symptoms, such as nausea and vomiting and severe POTS may interfere with eating. [4] [5] A POTS patient and an eating disorder patient may both have disrupted eating patterns, but the underlying causes and appropriate treatments are very different. Although I did not find specific evidence in the literature of such symptoms misattributed to eating disorders, it is not uncommon for a misdiagnosis of anxiety or other psychiatric illness attributed to POTS. [5] There is also evidence that eating disorders, particularly anorexia nervosa, may cause changes in cardiac function, structure, and rhythm. [6] Children with anorexia and bulimia may exhibit abnormally low blood pressure, slowed heart rates, and high heart rate variability. [7] In the abstract to a 2014 article in Clinical Autonomic Research, Takimoto, et al. reported autonomic abnormalities during tilt-table testing in study participants with anorexia nervosa. [8] Similarly, POTS and other forms of dysautonomia, display hallmark symptoms of high heart rates, abnormal rhythms, and erratic blood pressures. [13] And the irregular response of the autonomic nervous system during the tilt table test is one of the most recognized diagnostic criteria used to confirm a POTS diagnosis. There are conflicting views in the literature about the extent to which cardiac complications explain the fatality rates in anorexia and bulimia and whether such changes are reversible. [7] [9] Further research into these questions is needed, but what is certain is that eating disorders can be dangerous and require serious attention. While most forms of dysautonomia are chronic illnesses, they are not considered life-threatening on their own; rather, they are seriously life-altering and oft-times debilitating. Dysautonomia also requires serious attention and treatment. Stewart writes that it is essential to distinguish between eating disorders and POTS, noting that anorexia nervosa can cause “POTS-like” orthostatic intolerance in its early stages and young women referred for treatment for POTS symptoms may be underweight.[8] The similarities in patient demographics and overlap in symptoms between eating disorders and POTS have the potential to complicate the diagnostic picture further. Patients can have both conditions, of course, which may present additional diagnostic and treatment challenges. An untreated eating disorder might worsen pre-existing orthostatic intolerance. Since poorly managed orthostatic intolerance can cause limitations in many areas of life, such conditions, if unrecognized, could conceivably pose an additional challenge for eating disorder patients in achieving specific functional goals as part of treatment. There remains much to learn about both eating disorders and dysautonomia. Both can have a profound and long-lasting impact on a person’s life and health at an important point in that person’s development. Accurate diagnosis and appropriate treatment are vital. It is important to note that although the focus of this article was on anorexia, bulimia and largely POTS, there are many other eating disorders and dysautonomias. Further, these conditions can occur in people of any gender and at any stage of life. If you or someone you know is dealing with an eating disorder or dysautonomia, please consult a qualified medical professional without delay. Bibliography [1] National Institute of Mental Health, "Health Information: Statistics," November 2017. [Online]. Available: https://www.nimh.nih.gov/health/statistics/eating-disorders.shtml#part_155058. [2] R. Freeman, W. Wieling, F. B. Axelrod, D. G. Benditt, E. Benarroch, I. Biaggioni, W. P. Cheshire, T. Chelimsky, P. Cortelli, C. H. Gibbons, D. S. Goldstein, R. Hainsworth, M. J. Hilz, G. Jacob, H. Kaufmann, J. Jordan, L. A. Lipsitz, B. D. Levine, P. A. Low, C. Mathias, S. R. Raj, D. Robertson, P. Sandroni, I. Schatz, R. Schondorff, J. M. Stewart and J. G. van Dijk, "Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome," Clinical Autonomic Research, no. 12, pp. 69-72, April 2011. [3] J. N. Johnson, K. J. Mack, N. L. Kuntz, C. K. Brands, C. J. Porter and P. R. Fischer, "Postural Orthostatic Tachycardia Syndrome: A Clinical Review," Pediatric Neurology, vol. 42, no. 2, pp. 77-85, February 2010. [4] S. D. Sullivan, J. Hanauer, P. C. Rowe, D. F. Barron, A. Darbari and M. Oliva-Hemker, "Gastrointestinal Symptoms Associated with Orthostatic Intolerance," Journal of Pediatric Gastroenterology and Nutrition, no. 40, pp. 425-428, April 2005. [5] B. P. Grubb, "Postural Tachycardia Syndrome," Circulation, vol. 117, no. 21, pp. 2814-2817, May 2008. [6] M. A. Spaulding-Barclay, J. Stern and P. S. Mehler, "Cardiac changes in anorexia nervosa," Cardiology in the Young, 2016. [7] J.-A. Palma, L. Norcliffe-Kaufmann, C. Fuente-Mora, L. Percival, C. L. Spalink and H. Kaufmann, "Disorders of the Autonomic Nervous System: Autonomic Dysfunction in Pediatric Practice," in Swaiman's Pediatric Neurology, 6th Edition ed., Elsevier, 2017, pp. 1173-1183. [8] J. M. Stewart, "Common Syndromes of Orthostatic Intolerance," Pediatrics, vol. 131, no. 5, pp. 968-980, May 2013. [9] NINDS, "Postural Tachycardia Syndrome Information Page," 18 June 2018. [Online]. Available: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page. [10] Y. Takimoto, K. Yoshiuchi, T. Ishizawa, Y. Yamamoto and A. Akabayashi, "Autonomic dysfunction responses to head-up tilt in anorexia nervosa [Abstract]," Clinical Autonomic Research, vol. 24, no. 4, pp. 175-181, August 2014. [11] K. V. Sachs, B. Harnke, P. S. Mehler and M. J. Krantz, "Cardiovascular complications of anorexia nervosa: A systematic review," International Journal of Eating Disorders, vol. 49, no. 3, pp. 238-248, December 2015. [12] American Psychiatric Association, "Feeding and Eating Disorders," in Diagnostic and Statistical Manual of Mental Disorders, 5th Edition ed., https://doi.org/10.1176/appi.books.9780890425596.dsm10, 2013. [13] Grubb, B.P. & Karas, B. (1999) Clinical disorders of the autonomic nervous system associated with orthostatic intolerance. "Pacing and Clinical Electrophysiology" 22, 798-810 Return to Table of Contents