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Autoimmune Basis for Postural Tachycardia Syndrome Hongliang Li, MD, PhD; Xichun Yu, MD; Campbell Liles, BS; Muneer Khan, MD; Megan Vanderlinde‐Wood, MD; Allison Galloway, MD; Caitlin Zillner, BS; Alexandria Benbrook, BS; Sean Reim, BS; Daniel Collier, BS; Michael A. Hill, PhD; Satish R. Raj, MD; Luis E. Okamoto, MD; Madeleine W. Cunningham, PhD; Christopher E. Aston, PhD; David C. Kem, MD Abstract Background Patients with postural tachycardia syndrome (POTS) have exaggerated orthostatic tachycardia often following a viral illness, suggesting autoimmunity may play a pathophysiological role in POTS. We tested the hypothesis that they harbor functional autoantibodies to adrenergic receptors (AR). Methods and Results Fourteen POTS patients (7 each from 2 institutions) and 10 healthy subjects were examined for α1AR autoantibody‐mediated contractility using a perfused rat cremaster arteriole assay. A receptor‐transfected cell‐based assay was used to detect the presence of β1AR and β2AR autoantibodies. Data were normalized and expressed as a percentage of baseline. The sera of all 14 POTS patients demonstrated significant arteriolar contractile activity (69±3% compared to 91±1% of baseline for healthy controls, P<0.001) when coexisting β2AR dilative activity was blocked; and this was suppressed by α1AR blockade with prazosin. POTS sera acted as a partial α1AR antagonist significantly shifting phenylephrine contractility curves to the right. All POTS sera increased β1AR activation (130±3% of baseline, P<0.01) and a subset had increased β2AR activity versus healthy subjects. POTS sera shifted isoproterenol cAMP response curves to the left, consistent with enhanced β1AR and β2AR agonist activity. Autoantibody‐positive POTS sera demonstrated specific binding to β1AR, β2AR, and α1AR in transfected cells. Conclusions POTS patients have elevated α1AR autoantibodies exerting a partial peripheral antagonist effect resulting in a compensatory sympathoneural activation of α1AR for vasoconstriction and concurrent βAR‐mediated tachycardia. Coexisting β1AR and β2AR agonistic autoantibodies facilitate this tachycardia. These findings may explain the increased standing plasma norepinephrine and excessive tachycardia observed in many POTS patients. Read the full research article here. https://www.ahajournals.org/doi/full/10.1161/jaha.113.000755?sid=2a92ae76-d6fc-491c-9e79-43190d584090&amp;#sec-5

Autoimmune Basis for Postural Tachycardia Syndrome Hongliang Li, MD, PhD; Xichun Yu, MD; Campbell Liles, BS; Muneer Khan, MD; Megan Vanderlinde‐Wood, MD; Allison Galloway, MD; Caitlin Zillner, BS; Alexandria Benbrook, BS; Sean Reim, BS; Daniel Collier, BS; Michael A. Hill, PhD; Satish R. Raj, MD; Luis E. Okamoto, MD; Madeleine W. Cunningham, PhD; Christopher E. Aston, PhD; David C. Kem, MD Abstract Background Patients with postural tachycardia syndrome (POTS) have exaggerated orthostatic tachycardia often following a viral illness, suggesting autoimmunity may play a pathophysiological role in POTS. We tested the hypothesis that they harbor functional autoantibodies to adrenergic receptors (AR). Methods and Results Fourteen POTS patients (7 each from 2 institutions) and 10 healthy subjects were examined for α1AR autoantibody‐mediated contractility using a perfused rat cremaster arteriole assay. A receptor‐transfected cell‐based assay was used to detect the presence of β1AR and β2AR autoantibodies. Data were normalized and expressed as a percentage of baseline. The sera of all 14 POTS patients demonstrated significant arteriolar contractile activity (69±3% compared to 91±1% of baseline for healthy controls, P<0.001) when coexisting β2AR dilative activity was blocked; and this was suppressed by α1AR blockade with prazosin. POTS sera acted as a partial α1AR antagonist significantly shifting phenylephrine contractility curves to the right. All POTS sera increased β1AR activation (130±3% of baseline, P<0.01) and a subset had increased β2AR activity versus healthy subjects. POTS sera shifted isoproterenol cAMP response curves to the left, consistent with enhanced β1AR and β2AR agonist activity. Autoantibody‐positive POTS sera demonstrated specific binding to β1AR, β2AR, and α1AR in transfected cells. Conclusions POTS patients have elevated α1AR autoantibodies exerting a partial peripheral antagonist effect resulting in a compensatory sympathoneural activation of α1AR for vasoconstriction and concurrent βAR‐mediated tachycardia. Coexisting β1AR and β2AR agonistic autoantibodies facilitate this tachycardia. These findings may explain the increased standing plasma norepinephrine and excessive tachycardia observed in many POTS patients. Read the full research article here. https://www.ahajournals.org/doi/full/10.1161/jaha.113.000755?sid=2a92ae76-d6fc-491c-9e79-43190d584090&amp;#sec-5

Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, and the Autonomic Nervous System What is postural orthostatic tachycardia syndrome (POTS)? What are its signs and symptoms and what are the mechanisms by which all body systems are affected? How does the autonomic nervous system normally function? What is the etiology, or cause, of dysautonomia? How is it diagnosed? Can it be treated? Join professor Carrie on a journey through the autonomic nervous system and develop a deeper understanding of autonomic function in general, and POTS in particular. This lecture is presented at the college level and is meant to be accessible for patients, family members, students, and medical professionals. 0:00 Background and purpose 1:28 Definition and basic mechanism of POTS 8:10 POTS symptoms and causes: acute cerebral hypoperfusion, chronic cerebral hypoperfusion, chronic organ and tissue hypoperfusion, autonomic dysregulation, sympathetic hyperactivity (hyperadrenergic POTS) 16:59 Organization of the nervous system: central nervous system, peripheral nervous system, afferent pathways, efferent pathways, autonomic nervous system, sympathetic division, parasympathetic division 24:23 Nervous system signaling pathways: preganglionic neuron, ganglionic neuron, acetylcholine, cholinergic receptors, nicotinic receptors, muscarinic receptors, norepinephrine, adrenergic receptors, alpha receptors, beta receptors 43:50 The dysautonomia family of conditions: POTS, neurally mediated syncope, autonomic failure 46:13 Etiology of POTS: genetic mutations, joint hypermobility, Ehlers-Danlos syndrome, norepinephrine transporter (NET) deficiency, catecholamine synthesis, tyrosine hydroxylase (TH), aromatic L-amino acid decarboxylase (AADC), dopamine beta-hydroxylase (DBH), catechol-O-methyltransferase (COMT), monoamine oxidase A (MAO-A), epigenetics, deconditioning, mononucleosis, autoimmunity, Guillain-Barre syndrome 1:06:39 Diagnosing POTS: medical history, tilt table test, catecholamines test, specialized autonomic testing 1:16:18 POTS prognosis 1:19:26 Managing and treating POTS -- non-pharmacologic: diet, methylcobalamin, methyltetrahydrofolate, exercise, environment, psychosocial considerations 1:37:47 Managing and treating POTS -- medications: mineralocorticoids, beta-blockers, alpha-agonists, reuptake inhibitors, psychostimulants 1:53:46 Conclusion and hope for the future

Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, and the Autonomic Nervous System What is postural orthostatic tachycardia syndrome (POTS)? What are its signs and symptoms and what are the mechanisms by which all body systems are affected? How does the autonomic nervous system normally function? What is the etiology, or cause, of dysautonomia? How is it diagnosed? Can it be treated? Join professor Carrie on a journey through the autonomic nervous system and develop a deeper understanding of autonomic function in general, and POTS in particular. This lecture is presented at the college level and is meant to be accessible for patients, family members, students, and medical professionals. 0:00 Background and purpose 1:28 Definition and basic mechanism of POTS 8:10 POTS symptoms and causes: acute cerebral hypoperfusion, chronic cerebral hypoperfusion, chronic organ and tissue hypoperfusion, autonomic dysregulation, sympathetic hyperactivity (hyperadrenergic POTS) 16:59 Organization of the nervous system: central nervous system, peripheral nervous system, afferent pathways, efferent pathways, autonomic nervous system, sympathetic division, parasympathetic division 24:23 Nervous system signaling pathways: preganglionic neuron, ganglionic neuron, acetylcholine, cholinergic receptors, nicotinic receptors, muscarinic receptors, norepinephrine, adrenergic receptors, alpha receptors, beta receptors 43:50 The dysautonomia family of conditions: POTS, neurally mediated syncope, autonomic failure 46:13 Etiology of POTS: genetic mutations, joint hypermobility, Ehlers-Danlos syndrome, norepinephrine transporter (NET) deficiency, catecholamine synthesis, tyrosine hydroxylase (TH), aromatic L-amino acid decarboxylase (AADC), dopamine beta-hydroxylase (DBH), catechol-O-methyltransferase (COMT), monoamine oxidase A (MAO-A), epigenetics, deconditioning, mononucleosis, autoimmunity, Guillain-Barre syndrome 1:06:39 Diagnosing POTS: medical history, tilt table test, catecholamines test, specialized autonomic testing 1:16:18 POTS prognosis 1:19:26 Managing and treating POTS -- non-pharmacologic: diet, methylcobalamin, methyltetrahydrofolate, exercise, environment, psychosocial considerations 1:37:47 Managing and treating POTS -- medications: mineralocorticoids, beta-blockers, alpha-agonists, reuptake inhibitors, psychostimulants 1:53:46 Conclusion and hope for the future

Multiple System Atrophy (MSA) A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001). Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy). MSA is a fatal illness, and patients usually die within ten years of onset. References 1. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm 2. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press. 3. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal. 77, (908), 379-382.

Multiple System Atrophy (MSA) A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001). Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy). MSA is a fatal illness, and patients usually die within ten years of onset. References 1. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm 2. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press. 3. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal. 77, (908), 379-382.

Pure Autonomic Failure (PAF) A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat. Our web site provides links in our Link Directory to pure autonomic failure resources on the Internet. References Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898.

Pure Autonomic Failure (PAF) A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat. Our web site provides a full page of links of pure autonomic failure resources on the Internet. References Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898.

Otherwise referred to: Neurally Mediated Syncope, Neurally Mediated Hypotension, Vasovagal Syncope This disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes. Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. More information about NCS can be found here - https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/ We also include links to more web resources in our Link Directory. Reference Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.

Otherwise referred to: Neurally Mediated Syncope, Neurally Mediated Hypotension, Vasovagal Syncope This disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes. Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. A page full of links to other neurocardiogenic syncope resources on the Internet is included as well. To read more about neurocardiogenic syncope, click on the Articles link below. Reference Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.

Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand. Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about Postural Orthostatic Tachycardia Syndrome, click on the links under the POTS category in the Information Resources section of the navigation bar.

Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand. Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about Postural Orthostatic Tachycardia Syndrome, click on the links under the POTS category in the Information Resources section of the navigation bar.

Dysautonomia means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies. There are many different types of dysautonomia and many symptoms that can occur at once or at different times and at different severities, making dysautonomia very difficult to diagnose. It is also the reason that there is no one treatment plan advised for patients. Treatment is sculpted to the patient. However, there are symptoms that are common between patients regardless of the type of dysautonomia. difficulty sitting or standing upright dizziness, vertigo, and syncope (fainting) or pre-syncope fast, slow, or irregular heartbeat chest pain low blood pressure gastrointestinal disturbances nausea visual disturbances weakness shortness of breath mood swings anxiety fatigue and intolerance to exercise migraines sleep pattern issues frequent urination Temperature Regulation Problems and heat intolerance concentration and memory problems (brain fog) poor appetite sensitivity to bright lights and loud noise (irregular pupil dilation) Diagnosis frequently requires a specialist familiar with autonomic dysfunction and the various disorders that result. It is common for diagnosis to take a longer than many other disorders, however with the proper diagnostic testing the type of dysautonomia can be identified and effective treatment prescribed. DINET provides information , personal stories and articles written by patients about the types of dysautonomia, treatment and living with these chronic illnesses. This site focuses on the following types of dysautonomia; please note, these are not the only types or subtypes of the disorders described. Please explore the different categories under Information Resources to find out more about dysautonomia disorders. Postural Orthostatic Tachycardia Syndrome Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand. Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about postural orthostatic tachycardia syndrome, explore the POTS category in our Information Resource section. Neurocardiogenic Syncope (NCS) Sometimes referred to as neurally mediated syncope or vasovagal syncope, this disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes. Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. A page full of links to other neurocardiogenic syncope resources on the Internet is included as well. To read more about neurocardiogenic syncope, explore the NCS category in the Information Resources section. Pure Autonomic Failure (PAF) A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat. Our web site provides a page full of links to pure autonomic failure resources on the Internet. Multiple System Atrophy/Shy-Drager Syndrome (MSA) A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001). Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy). MSA is a very serious form of dysautonomia that can be fatal. Our website provides a page full of links to multiple system atrophy resources on the Internet. References 1. Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898. 2. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm 3. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press. 4. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal. 77, (908), 379-382. 5. Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.

Dysautonomia means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies. Diagnosis frequently requires a specialist familiar with autonomic dysfunction and the various disorders that result. It is common for diagnosis to take a longer than many other disorders, however with the proper diagnostic testing the type of dysautonomia can be identified and effective treatment prescribed. DINET provides information , personal stories and articles written by patients about the types of dysautonomia, treatment and living with these chronic illnesses. This site focuses on the following types of dysautonomia; please note, these are not the only types or subtypes of the disorders described. Please explore the different categories under Information Resources to find out more about dysautonomia disorders. Postural Orthostatic Tachycardia Syndrome Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand. Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about postural orthostatic tachycardia syndrome, explore the POTS category in our Information Resource section. Neurocardiogenic Syncope (NCS) Sometimes referred to as neurally mediated syncope or vasovagal syncope, this disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes. Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. A page full of links to other neurocardiogenic syncope resources on the Internet is included as well. To read more about neurocardiogenic syncope, explore the NCS category in the Information Resources section. Pure Autonomic Failure (PAF) A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat. Our web site provides a page full of links to pure autonomic failure resources on the Internet. Multiple System Atrophy/Shy-Drager Syndrome (MSA) A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001). Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy). MSA is a very serious form of dysautonomia that can be fatal. Our website provides a page full of links to multiple system atrophy resources on the Internet. References 1. Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898. 2. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm 3. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press. 4. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal. 77, (908), 379-382. 5. Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.

Anaesthesia Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient: http://www.ncbi.nlm.nih.gov/pubmed/17179264?dopt=AbstractPlus Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16698864&query_hl=1&itool=pubmed_docsum Preoperative considerations in a patient with orthostatic intolerance syndrome: http://journals.lww.com/anesthesiology/pages/articleviewer.aspx?year=2000&issue=08000&article=00041&type=fulltext Autonomic dysfunction - anaesthetic management http://www.anaesthetist.com/anaes/patient/ans.htm Baroreflex Abnormal baroreflex responses in patients with idiopathic orthostatic intolerance: http://www.ncf-net.org/library/freeman-OI-2000.htm Baroreflex control of muscle sympathetic nerve activity in postural orthostatic tachycardia syndrome: http://ajpheart.physiology.org/cgi/content/full/289/3/H1226 Catecholamines The broader view: catecholamine abnormalities: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=12102462&dopt=Abstract Endothelial NO Synthase Polymorphisms and Postural Tachycardia Syndrome: http://pt.wkhealth.com/pt/re/dyslipidaemia/pdfhandler.00004268-200511000-00008.pdf;jsessionid=LnhQwG11yV0fKLVmTywMzWdZLQfyhxRq1HLnJ9 1n7vhQ2rxnX4yv!-2048123402!181195628!8091!-1 Chiari malformation/spinal cord involvement Watch a presentation by physicians at The Chiari Institute and NIH as they discuss the possible connection between POTS, Ehlers-Danlos syndrome and Chiari Malformation: (click on the Ehlers-Danlos National Foundation link) http://www.thechiariinstitute.com/ Cerebral syncope in a patient with spinal cord injury: http://www.ncbi.nlm.nih.gov/pubmed/11990670?dopt=Abstract Chiari Malformation: http://www.dizziness-and-balance.com/disorders/central/cerebellar/chiari.html Chiari, fibromyalgia, gastrointestinal problems, gulf war syndrome, multiple chemical sensitivities/environmental illness, orthostatic intolerance: http://www.cfids.org/about-cfids/orthostatic-intolerance.asp Sinus arrhythmia and pupil size in Chiari I malformation: evidence of autonomic dysfunction: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8314116&dopt=Abstract The Chiari Institute: http://www.chiariinstitute.com/chiari_malformation.html Autonomic nervous system disorders in 230 cases of basilar impression and arnold-chiari deformity: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1494411&dopt=Abstract Chiari I malformation as a cause of orthostatic intolerance symptoms: a media myth? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11705431&dopt=Abstract No increased herniation of the cerebellar tonsils in a group of patients with orthostatic intolerance: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12598952&dopt=Abstract Orthostatic intolerance and syncope associated with Chiari type I malformation: http://jnnp.bmj.com/cgi/content/full/76/7/1034 Orthostatic hypotension following spinal cord injury: understanding clinical pathophysiology: http://www.nature.com/sc/journal/v44/n6/full/3101855a.html Chronic fatigue syndrome The importance of orthostatic intolerance in the chronic fatigue syndrome: http://www.ncf-net.org/library/orthostaticreview.htm MEDLINEplus health information on chronic fatigue syndrome: http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html Chronic fatigue syndrome: A hypothesis focusing on the autonomic nervous system: http://cs.portlandpress.com/cs/096/0117/0960117.pdf Dental Considerations Postural Orthostatic Tachycardia Syndrome: Dental Treatment Considerations by John K. Brooks, DDS; Laurie A. P. Francis, RDH: http://jada.ada.org/cgi/reprint/137/4/488.pdf Diabetes and autonomic neuropathy Chronic administration of pharmacologic doses of vitamin E improves the cardiac autonomic nervous system in patients with type 2 diabetes: http://www.ajcn.org/cgi/content/full/73/6/1052 Value of scintigraphy using meta-iodo-benzyl-guanidine (MIBG) in the investigation of cardiac autonomic neuropathy in diabetic patients. Comparison with Ewing tests: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9404408&dopt=Abstract Abnormal cardiovascular reflexes in juvenile diabetics as preclinical signs of autonomic neuropathy: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7346309&dopt=Abstract Response of the autonomous nervous system of the heart in diabetes mellitus: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=529862&dopt=Abstract MEDLINEplus health information on diabetes: http://www.nlm.nih.gov/medlineplus/diabetes.html Disability Blood volume perturbations in the postural tachycardia syndrome: PubMed Quality of life in patients with postural tachycardia syndrome: http://www.ncbi.nlm.nih.gov/pubmed/12059122 Ehlers-Danlos Syndrome (Joint Hypermobility Syndrome) Ehlers Danlos Syndrome. University of Washington, Seattle: http://www.orthop.washington.edu/uw/ehlersdanlos/tabID__3376/ItemID__32/PageID__1/Articles/Default.aspx Ehlers-Danlos National Foundation: http://www.ednf.org/ Ehlers-Danlos syndrome, classical type: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromeclassicaltype Ehlers-Danlos syndrome, hypermobility type: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromehypermobilitytype Joint hypermobility syndrome: a complex constellation of symptoms: http://www.reumatologia-dr-bravo.cl/para%20medicos/HIPERLAXITUD/ www_jointandbone_org_RODGRAH.htm Connective tissue disorders with spontaneous spinal cerebrospinal fluid leaks and intracranial hypotension: a prospective study: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=14683542&dopt=Abstract Association Between Joint Hypermobility Syndrome and Panic Disorder: http://ajp.psychiatryonline.org/cgi/content/full/155/11/1578 Is joint hypermobility related to anxiety in a nonclinical population also? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15345789 Neurological manifestations of Ehlers-Danlos syndrome: http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2005;volume=53;issue=3;spage=339;epage=341;aulast=Mathew Your eyes and Ehlers-Danlos Syndrome: http://www.totaleyecare.com/ocular-complication-ehlers-danlos-syndrome-1.html?_ga=1.14621751.1418931888.1390611040 Exercise The prevalence and significance of post-exercise (postural) hypotension in ultramarathon runners: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8614313&dopt=Abstract Fainting Certain cardiovascular indices predict syncope in the postural tachycardia syndrome: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8902319&dopt=Abstract Fibromyalgia National Fibromyalgia Research Association: http://www.nfra.net/ MEDLINEplus health information on fibromyalgia: http://www.nlm.nih.gov/medlineplus/fibromyalgia.html Elusive syndromes: Treating the biologic basis of fibromyalgia and related syndromes: http://www.ccjm.org/pdffiles/Clauw1001.pdf Hormones Influence of the menstrual cycle on sympathetic activity, baroreflex sensitivity, and vascular transduction in young women: http://circ.ahajournals.org/cgi/content/full/101/8/862 Hypovolemia Hypovolemia in syncope and orthostatic intolerance role of the renin-angiotensin system: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9274896&dopt=Abstract Is this patient hypovolemic? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10086438&dopt=Abstract Idiopathic hypovolemia: a self perpetuating autonomic dysfunction? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9869552&dopt=Abstract Lipodystrophy Partial lipodystrophy in a boy: http://www.indianpediatrics.net/jan2000/case3.htm Magnesium Erythrocyte magnesium in symptomatic patients with primary mitral valve prolapse: relationship to symptoms, mitral leaflet thickness, joint hypermobility and autonomic regulation: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1844553&dopt=Abstract Cardiovascular consequences of magnesium deficiency and loss: pathogenesis, prevalence and manifestations. Magnesium and chloride loss in refractory potassium repletion: http://www.mgwater.com/cardio.shtml Magnesium and therapeutics: http://www.mgwater.com/dur01.shtml Magnesium deficiency in the pathogenesis of mitral valve prolapse: http://www.mdheal.org/magnesiu.htm Review and hypothesis: Might patients with the chronic fatigue syndrome have latent tetany of magnesium deficiency: http://www.mgwater.com/clmd.shtml The magnesium web site - Links to over 300 articles discussing magnesium and magnesium deficiency: http://www.mgwater.com/index.shtml Medications/Treatments Web Site for Cardiovascular and Autonomic Pharmacology: http://courses.washington.edu/chat543/cvans/ Drug protects against nervous system failure: http://www.news.harvard.edu/gazette/1997/04.17/DrugProtectsAga.html Treatment of orthostatic hypotension with erythropoietin: http://content.nejm.org/cgi/content/absract/329/9/611 Effects of long-term clonidine administration on the hemodynamic and neuroendocrine postural responses of patients with dysautonomia: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6295714&dopt=Abstract Cardiac vagal response to water ingestion in normal human subjects: http://cs.portlandpress.com/cs/103/0157/cs1030157.htm Medicinal uses of licorice through the millennia: the good and plenty of it: http://fkogserver.bmc.uu.se/course/B/Liquorice.pdf Licorice root. A natural sweetener and an important ingredient in Chinese medicine: http://www.iupac.org/publications/pac/2002/pdf/7407x1189.pdf Licking latency with licorice root: http://www.jci.org/cgi/content/full/115/3/591 Adverse drug reactions related to drugs used in orthostatic hypotension: a prospective and systematic pharmacovigilance study in France: http://www.ncbi.nlm.nih.gov/pubmed/15991040?dopt=Abstract Mitochondrial disease and dysautonomia Mitochondrial cytopathy in adults: what we know so far: http://www.ccjm.org/pdffiles/COHEN701.PDF Mitochondrial encephalomyopathies presenting with features of autonomic and visceral dysfunction: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8736411&dopt=Abstract A case of mitochondrial encephalomyopathy with peripheral neuropathy and autonomic symptoms: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=7605684&dopt=Abstract Neurologic presentations of mitochondrial disorders http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10641610&dopt=Abstract Mitral valve prolapse The phenomenon of dysautonomia and mitral valve prolapse: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8003350&dopt=Abstract Exercise response in young women with mitral valve prolapse: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=2805839&dopt=Abstract Multiple system atrophy/shy-drager syndrome SDS/MSA support group: http://www.shy-drager.org/ Web site full of links to other sites about MSA/SDS: http://www.corwin-millman.com/shy-drager/links.html Norepinephrine transporter Genetic or acquired deficits in the norepinephrine transporter: current understanding of clinical implications: http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=168695 Orthostatic intolerance is not necessarily related to a specific mutation (Ala457Pro) in the human norepinephrine transporter gene: http://www.ncbi.nlm.nih.gov/pubmed/12589229?dopt=Abstract Phenotypical evidence for a gender difference in cardiac norepinephrine transporter function: http://ajpregu.physiology.org/cgi/content/full/286/5/R851 The Nutcracker phenomenon Does severe nutcracker phenomenon cause pediatric chronic fatigue? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10749295&dopt=Abstract Nutcracker phenomenon demonstrated by three-dimensional computed tomography: http://www.medonline.com.br/nutpn.pdf Diagnosis of the nutcracker phenomenon using two-dimensional ultrasonography: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=9491284&dopt=Abstract Magnetic resonance angiography in nutcracker phenomenon: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10230562&dopt=Abstract An effective "transluminal balloon angioplasty" for pediatric chronic fatigue syndrome with nutcracker phenomenon: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10661488&dopt=Abstract Nutcracker phenomenon treated with left renal vein transposition: a case report: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10331171&dopt=Abstract The nutcracker syndrome: its role in the pelvic venous disorders: http://www.ncbi.nlm.nih.gov/pubmed/11700480?dopt=Abstract Outlook Orthostatic hypotension in organic dementia: relationship between blood pressure, cortical blood flow and symptoms: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8924753&dopt=Abstract Neurocardiovascular instability, hypotensive episodes, and MRI lesions in neurodegenerative dementia: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10818535&dopt=Abstract Orthostatic hypotension in Alzheimer's disease: result or cause of brain dysfunction? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10476310&dopt=Abstract Orthostatic hypotension as a risk factor for stroke: http://stroke.ahajournals.org/cgi/pmidlookup?view=full&pmid=11022055 Orthostatic hypotension Orthostatic hypotension: http://www.dizziness-and-balance.com/disorders/medical/orthostatic.html Cardiovascular Causes of Falls by Brian J. Carey and John F. Potter: http://ageing.oxfordjournals.org/cgi/reprint/30/suppl_4/19.pdf Orthostatic Hypotension by Bradley JG, Davis KA. http://www.aafp.org/afp/20031215/2393.pdf Paraneoplastic syndromes Immunological and endocrinological abnormalities in paraneoplastic disorders with involvement of the autonomic nervous system: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=9241563&dopt=Abstract Pheochromocytoma Biochemical diagnosis of pheochromocytoma: http://www.angelfire.com/hi/Pheochromocytoma/biodiag.html MEDLINEplus health information on pheochromocytoma: http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html Germ-line mutations in nonsyndromic pheochromocytoma: http://content.nejm.org/cgi/content/abstract/346/19/1459 Porphyria Diagnosis and management of porphyria: http://bmj.bmjjournals.com/cgi/content/full/320/7250/1647 Postural orthostatic tachycardia syndrome/orthostatic intolerance Medscape: Postural Tachycardia Syndrome: http://www.medscape.com/viewarticle/705183 The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Orthostatic intolerance: http://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htm A review of the classification, diagnosis, and management of autonomic dysfunction syndromes associated with orthostatic intolerance: http://publicacoes.cardiol.br/abc/2000/7406/74060008i.pdf Clinical disorders of the autonomic nervous system associated with orthostatic intolerance: an overview of classification, clinical evaluation and management: http://www.ndrf.org/PDF%20Files/disorders.PDF The neuropathic postural tachycardia syndrome: http://content.nejm.org/cgi/content/abstract/343/14/1008 Hereditary dysautonomias: Current knowledge and collaborations for the future: Oct 3, 2002 http://www.familialdysautonomia.org/NIH_OCT3.pdf Oct. 4 2002 http://www.familialdysautonomia.org/NIH_OCT4.pdf Effects of head-up tilting on baroreceptor control in subjects with different tolerances to orthostatic stress: http://cs.portlandpress.com/cs/103/0221/cs1030221.htm Vascular perturbations in the chronic orthostatic intolerance of the postural orthostatic tachycardia syndrome: http://jap.physiology.org/cgi/content/full/89/4/1505 American Autonomic Society: (be sure to visit the autonomic news section for information on the latest research) www.americanautonomicsociety.org/ Postural tachycardia syndrome and anxiety disorders: http://jnnp.bmj.com/content/80/3/339.abstract/reply#jnnp_el_4620 Pregnancy Postpartum Postural Orthostatic Tachycardia Syndrome in a Patient with the Joint Hypermobility Syndrome: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778448/ Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient: http://www.ncbi.nlm.nih.gov/pubmed/17179264?dopt=%20AbstractPlus Research Studies ClinicalTrials.gov http://www.clinicaltrials.gov/ DINET studies page: http://dinet.org/index.php/information-resources/studies NDRF clinical research page: http://www.ndrf.org/dysautonomia_clinic_resea.htm Support 12 More Pages: http://www.12morepages.com STARS US (Syncope Trust and Reflex Anoxic Seizures) http://www.stars-us.org/ STARS - syncope trust and reflex anoxic seizures: www.stars.org.uk National Dysautonomia Research Foundation: www.ndrf.org Dysautonomia Youth Network of America (DYNA) (devoted to youth with dysautonomia) http://www.dynainc.org/ Syringomyelia NINDS syringomyelia information page: http://www.ninds.nih.gov/health_and_medical/ disorders/syringomyelia_short.htm Postural tachycardia syndrome in syringomyelia: response to fludrocortisone and beta-blockers: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=11710800&dopt=Abstract Involvement of the autonomic nervous system in patients with syringomyelia - a study with the sympathetic skin response: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8654321&dopt=Abstract Hyperhidrosis as the presenting symptom in post-traumatic syringomyelgia: (hyperhidrosis is excessive sweating) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8090551&dopt=Abstract Cardiovascular reflexes in syringomyelia: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=7139257&dopt=Abstract MEDLINEplus health information on syringomyelia: http://www.nlm.nih.gov/medlineplus/syringomyelia.html Tests The fainting patient: value of the head-upright tilt-table test in adult patients with orthostatic intolerance: http://www.cmaj.ca/cgi/content/full/164/3/372 Autonomic diseases: clinical features and laboratory evaluation: http://jnnp.bmjjournals.com/cgi/content/full/74/suppl_3/iii31 Syncope Care & Treatment: http://my.clevelandclinic.org/heart/disorders/electric/syncope.aspx Videos The Dysautonomia Information Network presents the first full length documentary about Postural Orthostatic Tachycardia Syndrome. http://dinet.org/index.php/information-resources/pots-place/pots-video POTS - Mayo Clinic: http://www.youtube.com/watch?v=CatWlEGPqG4&feature=related POTS syndrome - Mayo Clinic: http://www.youtube.com/watch?v=iJ9bv7jx-Ls&feature=channel The Woman who Kept Falling Down - Mystery Diagnosis - Part 1: http://www.youtube.com/watch?v=NN3PB6N6oGY The Woman who Kept Falling Down - Mystery Diagnosis - Part 2: http://www.youtube.com/watch?v=I40-r3RpFjs&NR=1 The Woman who Kept Falling Down - Mystery Diagnosis - Part 3: http://www.youtube.com/watch?v=PHydjGdg4XQ&NR=1

Anaesthesia Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient: http://www.ncbi.nlm.nih.gov/pubmed/17179264?dopt=AbstractPlus Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16698864&query_hl=1&itool=pubmed_docsum Preoperative considerations in a patient with orthostatic intolerance syndrome: http://journals.lww.com/anesthesiology/pages/articleviewer.aspx?year=2000&issue=08000&article=00041&type=fulltext Autonomic dysfunction - anaesthetic management http://www.anaesthetist.com/anaes/patient/ans.htm Baroreflex Abnormal baroreflex responses in patients with idiopathic orthostatic intolerance: http://www.ncf-net.org/library/freeman-OI-2000.htm Baroreflex control of muscle sympathetic nerve activity in postural orthostatic tachycardia syndrome: http://ajpheart.physiology.org/cgi/content/full/289/3/H1226 Catecholamines The broader view: catecholamine abnormalities: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=12102462&dopt=Abstract Endothelial NO Synthase Polymorphisms and Postural Tachycardia Syndrome: http://pt.wkhealth.com/pt/re/dyslipidaemia/pdfhandler.00004268-200511000-00008.pdf;jsessionid=LnhQwG11yV0fKLVmTywMzWdZLQfyhxRq1HLnJ9 1n7vhQ2rxnX4yv!-2048123402!181195628!8091!-1 Chiari malformation/spinal cord involvement Watch a presentation by physicians at The Chiari Institute and NIH as they discuss the possible connection between POTS, Ehlers-Danlos syndrome and Chiari Malformation: (click on the Ehlers-Danlos National Foundation link) http://www.thechiariinstitute.com/ Cerebral syncope in a patient with spinal cord injury: http://www.ncbi.nlm.nih.gov/pubmed/11990670?dopt=Abstract Chiari Malformation: http://www.dizziness-and-balance.com/disorders/central/cerebellar/chiari.html Chiari, fibromyalgia, gastrointestinal problems, gulf war syndrome, multiple chemical sensitivities/environmental illness, orthostatic intolerance: http://www.cfids.org/about-cfids/orthostatic-intolerance.asp Sinus arrhythmia and pupil size in Chiari I malformation: evidence of autonomic dysfunction: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8314116&dopt=Abstract The Chiari Institute: http://www.chiariinstitute.com/chiari_malformation.html Autonomic nervous system disorders in 230 cases of basilar impression and arnold-chiari deformity: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1494411&dopt=Abstract Chiari I malformation as a cause of orthostatic intolerance symptoms: a media myth? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11705431&dopt=Abstract No increased herniation of the cerebellar tonsils in a group of patients with orthostatic intolerance: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12598952&dopt=Abstract Orthostatic intolerance and syncope associated with Chiari type I malformation: http://jnnp.bmj.com/cgi/content/full/76/7/1034 Orthostatic hypotension following spinal cord injury: understanding clinical pathophysiology: http://www.nature.com/sc/journal/v44/n6/full/3101855a.html Chronic fatigue syndrome The importance of orthostatic intolerance in the chronic fatigue syndrome: http://www.ncf-net.org/library/orthostaticreview.htm MEDLINEplus health information on chronic fatigue syndrome: http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html Chronic fatigue syndrome: A hypothesis focusing on the autonomic nervous system: http://cs.portlandpress.com/cs/096/0117/0960117.pdf Dental Considerations Postural Orthostatic Tachycardia Syndrome: Dental Treatment Considerations by John K. Brooks, DDS; Laurie A. P. Francis, RDH: http://jada.ada.org/cgi/reprint/137/4/488.pdf Diabetes and autonomic neuropathy Chronic administration of pharmacologic doses of vitamin E improves the cardiac autonomic nervous system in patients with type 2 diabetes: http://www.ajcn.org/cgi/content/full/73/6/1052 Value of scintigraphy using meta-iodo-benzyl-guanidine (MIBG) in the investigation of cardiac autonomic neuropathy in diabetic patients. Comparison with Ewing tests: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9404408&dopt=Abstract Abnormal cardiovascular reflexes in juvenile diabetics as preclinical signs of autonomic neuropathy: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7346309&dopt=Abstract Response of the autonomous nervous system of the heart in diabetes mellitus: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=529862&dopt=Abstract MEDLINEplus health information on diabetes: http://www.nlm.nih.gov/medlineplus/diabetes.html Disability Blood volume perturbations in the postural tachycardia syndrome: PubMed Quality of life in patients with postural tachycardia syndrome: http://www.ncbi.nlm.nih.gov/pubmed/12059122 Ehlers-Danlos Syndrome (Joint Hypermobility Syndrome) Ehlers Danlos Syndrome. University of Washington, Seattle: http://www.orthop.washington.edu/uw/ehlersdanlos/tabID__3376/ItemID__32/PageID__1/Articles/Default.aspx Ehlers-Danlos National Foundation: http://www.ednf.org/ Ehlers-Danlos syndrome, classical type: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromeclassicaltype Ehlers-Danlos syndrome, hypermobility type: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromehypermobilitytype Joint hypermobility syndrome: a complex constellation of symptoms: http://www.reumatologia-dr-bravo.cl/para%20medicos/HIPERLAXITUD/ www_jointandbone_org_RODGRAH.htm Connective tissue disorders with spontaneous spinal cerebrospinal fluid leaks and intracranial hypotension: a prospective study: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=14683542&dopt=Abstract Association Between Joint Hypermobility Syndrome and Panic Disorder: http://ajp.psychiatryonline.org/cgi/content/full/155/11/1578 Is joint hypermobility related to anxiety in a nonclinical population also? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15345789 Neurological manifestations of Ehlers-Danlos syndrome: http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2005;volume=53;issue=3;spage=339;epage=341;aulast=Mathew Your eyes and Ehlers-Danlos Syndrome: http://www.totaleyecare.com/ocular-complication-ehlers-danlos-syndrome-1.html?_ga=1.14621751.1418931888.1390611040 Exercise The prevalence and significance of post-exercise (postural) hypotension in ultramarathon runners: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8614313&dopt=Abstract Fainting Certain cardiovascular indices predict syncope in the postural tachycardia syndrome: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8902319&dopt=Abstract Fibromyalgia National Fibromyalgia Research Association: http://www.nfra.net/ MEDLINEplus health information on fibromyalgia: http://www.nlm.nih.gov/medlineplus/fibromyalgia.html Elusive syndromes: Treating the biologic basis of fibromyalgia and related syndromes: http://www.ccjm.org/pdffiles/Clauw1001.pdf Hormones Influence of the menstrual cycle on sympathetic activity, baroreflex sensitivity, and vascular transduction in young women: http://circ.ahajournals.org/cgi/content/full/101/8/862 Hypovolemia Hypovolemia in syncope and orthostatic intolerance role of the renin-angiotensin system: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9274896&dopt=Abstract Is this patient hypovolemic? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10086438&dopt=Abstract Idiopathic hypovolemia: a self perpetuating autonomic dysfunction? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9869552&dopt=Abstract Lipodystrophy Partial lipodystrophy in a boy: http://www.indianpediatrics.net/jan2000/case3.htm Magnesium Erythrocyte magnesium in symptomatic patients with primary mitral valve prolapse: relationship to symptoms, mitral leaflet thickness, joint hypermobility and autonomic regulation: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1844553&dopt=Abstract Cardiovascular consequences of magnesium deficiency and loss: pathogenesis, prevalence and manifestations. Magnesium and chloride loss in refractory potassium repletion: http://www.mgwater.com/cardio.shtml Magnesium and therapeutics: http://www.mgwater.com/dur01.shtml Magnesium deficiency in the pathogenesis of mitral valve prolapse: http://www.mdheal.org/magnesiu.htm Review and hypothesis: Might patients with the chronic fatigue syndrome have latent tetany of magnesium deficiency: http://www.mgwater.com/clmd.shtml The magnesium web site - Links to over 300 articles discussing magnesium and magnesium deficiency: http://www.mgwater.com/index.shtml Medications/Treatments Web Site for Cardiovascular and Autonomic Pharmacology: http://courses.washington.edu/chat543/cvans/ Drug protects against nervous system failure: http://www.news.harvard.edu/gazette/1997/04.17/DrugProtectsAga.html Treatment of orthostatic hypotension with erythropoietin: http://content.nejm.org/cgi/content/absract/329/9/611 Effects of long-term clonidine administration on the hemodynamic and neuroendocrine postural responses of patients with dysautonomia: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6295714&dopt=Abstract Cardiac vagal response to water ingestion in normal human subjects: http://cs.portlandpress.com/cs/103/0157/cs1030157.htm Medicinal uses of licorice through the millennia: the good and plenty of it: http://fkogserver.bmc.uu.se/course/B/Liquorice.pdf Licorice root. A natural sweetener and an important ingredient in Chinese medicine: http://www.iupac.org/publications/pac/2002/pdf/7407x1189.pdf Licking latency with licorice root: http://www.jci.org/cgi/content/full/115/3/591 Adverse drug reactions related to drugs used in orthostatic hypotension: a prospective and systematic pharmacovigilance study in France: http://www.ncbi.nlm.nih.gov/pubmed/15991040?dopt=Abstract Mitochondrial disease and dysautonomia Mitochondrial cytopathy in adults: what we know so far: http://www.ccjm.org/pdffiles/COHEN701.PDF Mitochondrial encephalomyopathies presenting with features of autonomic and visceral dysfunction: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8736411&dopt=Abstract A case of mitochondrial encephalomyopathy with peripheral neuropathy and autonomic symptoms: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=7605684&dopt=Abstract Neurologic presentations of mitochondrial disorders http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10641610&dopt=Abstract Mitral valve prolapse The phenomenon of dysautonomia and mitral valve prolapse: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8003350&dopt=Abstract Exercise response in young women with mitral valve prolapse: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=2805839&dopt=Abstract Multiple system atrophy/shy-drager syndrome SDS/MSA support group: http://www.shy-drager.org/ Web site full of links to other sites about MSA/SDS: http://www.corwin-millman.com/shy-drager/links.html Norepinephrine transporter Genetic or acquired deficits in the norepinephrine transporter: current understanding of clinical implications: http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=168695 Orthostatic intolerance is not necessarily related to a specific mutation (Ala457Pro) in the human norepinephrine transporter gene: http://www.ncbi.nlm.nih.gov/pubmed/12589229?dopt=Abstract Phenotypical evidence for a gender difference in cardiac norepinephrine transporter function: http://ajpregu.physiology.org/cgi/content/full/286/5/R851 The Nutcracker phenomenon Does severe nutcracker phenomenon cause pediatric chronic fatigue? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10749295&dopt=Abstract Nutcracker phenomenon demonstrated by three-dimensional computed tomography: http://www.medonline.com.br/nutpn.pdf Diagnosis of the nutcracker phenomenon using two-dimensional ultrasonography: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=9491284&dopt=Abstract Magnetic resonance angiography in nutcracker phenomenon: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10230562&dopt=Abstract An effective "transluminal balloon angioplasty" for pediatric chronic fatigue syndrome with nutcracker phenomenon: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10661488&dopt=Abstract Nutcracker phenomenon treated with left renal vein transposition: a case report: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10331171&dopt=Abstract The nutcracker syndrome: its role in the pelvic venous disorders: http://www.ncbi.nlm.nih.gov/pubmed/11700480?dopt=Abstract Outlook Orthostatic hypotension in organic dementia: relationship between blood pressure, cortical blood flow and symptoms: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8924753&dopt=Abstract Neurocardiovascular instability, hypotensive episodes, and MRI lesions in neurodegenerative dementia: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10818535&dopt=Abstract Orthostatic hypotension in Alzheimer's disease: result or cause of brain dysfunction? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=10476310&dopt=Abstract Orthostatic hypotension as a risk factor for stroke: http://stroke.ahajournals.org/cgi/pmidlookup?view=full&pmid=11022055 Orthostatic hypotension Orthostatic hypotension: http://www.dizziness-and-balance.com/disorders/medical/orthostatic.html Cardiovascular Causes of Falls by Brian J. Carey and John F. Potter: http://ageing.oxfordjournals.org/cgi/reprint/30/suppl_4/19.pdf Orthostatic Hypotension by Bradley JG, Davis KA. http://www.aafp.org/afp/20031215/2393.pdf Paraneoplastic syndromes Immunological and endocrinological abnormalities in paraneoplastic disorders with involvement of the autonomic nervous system: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=9241563&dopt=Abstract Pheochromocytoma Biochemical diagnosis of pheochromocytoma: http://www.angelfire.com/hi/Pheochromocytoma/biodiag.html MEDLINEplus health information on pheochromocytoma: http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html Germ-line mutations in nonsyndromic pheochromocytoma: http://content.nejm.org/cgi/content/abstract/346/19/1459 Porphyria Diagnosis and management of porphyria: http://bmj.bmjjournals.com/cgi/content/full/320/7250/1647 Postural orthostatic tachycardia syndrome/orthostatic intolerance Medscape: Postural Tachycardia Syndrome: http://www.medscape.com/viewarticle/705183 The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Orthostatic intolerance: http://www.nymc.edu/fhp/centers/syncope/chronic_orthostatic_intolerance.htm A review of the classification, diagnosis, and management of autonomic dysfunction syndromes associated with orthostatic intolerance: http://publicacoes.cardiol.br/abc/2000/7406/74060008i.pdf Clinical disorders of the autonomic nervous system associated with orthostatic intolerance: an overview of classification, clinical evaluation and management: http://www.ndrf.org/PDF%20Files/disorders.PDF The neuropathic postural tachycardia syndrome: http://content.nejm.org/cgi/content/abstract/343/14/1008 Hereditary dysautonomias: Current knowledge and collaborations for the future: Oct 3, 2002 http://www.familialdysautonomia.org/NIH_OCT3.pdf Oct. 4 2002 http://www.familialdysautonomia.org/NIH_OCT4.pdf Effects of head-up tilting on baroreceptor control in subjects with different tolerances to orthostatic stress: http://cs.portlandpress.com/cs/103/0221/cs1030221.htm Vascular perturbations in the chronic orthostatic intolerance of the postural orthostatic tachycardia syndrome: http://jap.physiology.org/cgi/content/full/89/4/1505 American Autonomic Society: (be sure to visit the autonomic news section for information on the latest research) www.americanautonomicsociety.org/ Postural tachycardia syndrome and anxiety disorders: http://jnnp.bmj.com/content/80/3/339.abstract/reply#jnnp_el_4620 Pregnancy Postpartum Postural Orthostatic Tachycardia Syndrome in a Patient with the Joint Hypermobility Syndrome: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778448/ Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient: http://www.ncbi.nlm.nih.gov/pubmed/17179264?dopt=%20AbstractPlus Research Studies ClinicalTrials.gov http://www.clinicaltrials.gov/ DINET studies page: http://dinet.org/index.php/information-resources/studies NDRF clinical research page: http://www.ndrf.org/dysautonomia_clinic_resea.htm Support 12 More Pages: http://www.12morepages.com STARS US (Syncope Trust and Reflex Anoxic Seizures) http://www.stars-us.org/ STARS - syncope trust and reflex anoxic seizures: www.stars.org.uk National Dysautonomia Research Foundation: www.ndrf.org Dysautonomia Youth Network of America (DYNA) (devoted to youth with dysautonomia) http://www.dynainc.org/ Syringomyelia NINDS syringomyelia information page: http://www.ninds.nih.gov/health_and_medical/ disorders/syringomyelia_short.htm Postural tachycardia syndrome in syringomyelia: response to fludrocortisone and beta-blockers: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=11710800&dopt=Abstract Involvement of the autonomic nervous system in patients with syringomyelia - a study with the sympathetic skin response: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8654321&dopt=Abstract Hyperhidrosis as the presenting symptom in post-traumatic syringomyelgia: (hyperhidrosis is excessive sweating) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=8090551&dopt=Abstract Cardiovascular reflexes in syringomyelia: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd= Retrieve&db=PubMed&list_uids=7139257&dopt=Abstract MEDLINEplus health information on syringomyelia: http://www.nlm.nih.gov/medlineplus/syringomyelia.html Tests The fainting patient: value of the head-upright tilt-table test in adult patients with orthostatic intolerance: http://www.cmaj.ca/cgi/content/full/164/3/372 Autonomic diseases: clinical features and laboratory evaluation: http://jnnp.bmjjournals.com/cgi/content/full/74/suppl_3/iii31 Syncope Care & Treatment: http://my.clevelandclinic.org/heart/disorders/electric/syncope.aspx Videos The Dysautonomia Information Network presents the first full length documentary about Postural Orthostatic Tachycardia Syndrome. http://dinet.org/index.php/information-resources/pots-place/pots-video POTS - Mayo Clinic: http://www.youtube.com/watch?v=CatWlEGPqG4&feature=related POTS syndrome - Mayo Clinic: http://www.youtube.com/watch?v=iJ9bv7jx-Ls&feature=channel The Woman who Kept Falling Down - Mystery Diagnosis - Part 1: http://www.youtube.com/watch?v=NN3PB6N6oGY The Woman who Kept Falling Down - Mystery Diagnosis - Part 2: http://www.youtube.com/watch?v=I40-r3RpFjs&NR=1 The Woman who Kept Falling Down - Mystery Diagnosis - Part 3: http://www.youtube.com/watch?v=PHydjGdg4XQ&NR=1

My name is April, and I was diagnosed with inappropriate sinus tachycardia (IST) almost two years ago. I was 19, turning 20, when I found out what I had. I was a pretty normal kid until one single day and one single moment that changed my life forever. I was working two jobs and going to school full time. I was studying to be a nurse, waiting tables, and working at a local nursing home. I had just gotten engaged to my high school sweetheart of four years. Life was at an all-time high for me. Then it happened; I was waiting tables when I started to feel extremely uneasy, and then my hands started to shake uncontrollably. I thought maybe my sugar was just low, so I drank some OJ with added sugar. I just could not shake that feeling, so I thought maybe some fresh air would do me good. I stepped outside, and almost all at once I felt it; my heart was beating so fast that I thought it was going to beat right out of my chest. I alerted my manger about what was going on, and he led me inside where he took my pulse. His eyes got wide, and he said that it was 190 beats per minute. He asked if it was okay to call an ambulance. I said "no," thinking it would just pass. Almost an hour later, I had him call my fiancé who took me to the hospital. My heart rate was 190 beats per minute, and it took them almost 3 hours to bring it down with medication to 100-120 beats per minute. The next day, I went to see a cardiologist who referred me to an EP doctor. He did a tilt table test, and from what he found, it was IST. I was so frightened when he told me. I left and went to another doctor. He, unfortunately, did not even believe in any type of dysautonomia. At this point, I was forced to quit nursing school and leave my jobs. I spent all my days sleeping on the couch. I had no energy to even move. I kept fighting and made my way the Cleveland Clinic in Ohio. The doctor I saw there ran tons of tests and said the same thing my original doctor had said, IST. Now, my symptoms have grown and became much worse. I'm going to go back to the first doctor that I saw in hopes for better answers. This is where I stand now with everything - lost and confused, hoping for just a part of my life back. I have tried every medication in the book, but nothing seems to help me. Shortly after getting sick, I had to have my gallbladder taken out. For some unknown reason, it became very sick and was not functioning at all. I suffer from the same symptoms as others on DINET: constant nausea, dizziness, palpations, chest pain, fatigue, tremors, trouble sleeping, trouble breathing, and many more symptoms that come and go. I've learned to enjoy the small things in life, and when I have one of my very rare good days, I surround myself with friends and family and enjoy every moment of it. Without the love of them and my mom pushing me to keep going, I might have given up a long time ago. This condition is hard to live with and hard to explain to others. They don't understand it or even believe it's as bad as I say. Don't ever give up the fight, guys. Enjoy the small moments. Thank you for reading my story.

My name is April, and I was diagnosed with inappropriate sinus tachycardia (IST) almost two years ago. I was 19, turning 20, when I found out what I had. I was a pretty normal kid until one single day and one single moment that changed my life forever. I was working two jobs and going to school full time. I was studying to be a nurse, waiting tables, and working at a local nursing home. I had just gotten engaged to my high school sweetheart of four years. Life was at an all-time high for me. Then it happened; I was waiting tables when I started to feel extremely uneasy, and then my hands started to shake uncontrollably. I thought maybe my sugar was just low, so I drank some OJ with added sugar. I just could not shake that feeling, so I thought maybe some fresh air would do me good. I stepped outside, and almost all at once I felt it; my heart was beating so fast that I thought it was going to beat right out of my chest. I alerted my manger about what was going on, and he led me inside where he took my pulse. His eyes got wide, and he said that it was 190 beats per minute. He asked if it was okay to call an ambulance. I said "no," thinking it would just pass. Almost an hour later, I had him call my fiancé who took me to the hospital. My heart rate was 190 beats per minute, and it took them almost 3 hours to bring it down with medication to 100-120 beats per minute. The next day, I went to see a cardiologist who referred me to an EP doctor. He did a tilt table test, and from what he found, it was IST. I was so frightened when he told me. I left and went to another doctor. He, unfortunately, did not even believe in any type of dysautonomia. At this point, I was forced to quit nursing school and leave my jobs. I spent all my days sleeping on the couch. I had no energy to even move. I kept fighting and made my way the Cleveland Clinic in Ohio. The doctor I saw there ran tons of tests and said the same thing my original doctor had said, IST. Now, my symptoms have grown and became much worse. I'm going to go back to the first doctor that I saw in hopes for better answers. This is where I stand now with everything - lost and confused, hoping for just a part of my life back. I have tried every medication in the book, but nothing seems to help me. Shortly after getting sick, I had to have my gallbladder taken out. For some unknown reason, it became very sick and was not functioning at all. I suffer from the same symptoms as others on DINET: constant nausea, dizziness, palpations, chest pain, fatigue, tremors, trouble sleeping, trouble breathing, and many more symptoms that come and go. I've learned to enjoy the small things in life, and when I have one of my very rare good days, I surround myself with friends and family and enjoy every moment of it. Without the love of them and my mom pushing me to keep going, I might have given up a long time ago. This condition is hard to live with and hard to explain to others. They don't understand it or even believe it's as bad as I say. Don't ever give up the fight, guys. Enjoy the small moments. Thank you for reading my story.

Featured below are ongoing studies related to dysautonomia and POTS related illnesses. DINET does its best to select the studies that we believe will best appeal to our community. If you know of a study that you would like to share with DINET, please email the information with the link to the study, to webmaster@dinet.org All information will be reviewed. Recruitment Studies NEW: Para- and Post Infectious Autonomic Dysfunction: The aim of this study is to identify specific infectious diseases associated with autonomic dysfunction and to identify patterns. Mayo Clinic, Scottsdale AZ Contact for more information: Marie Grill, MD, 480-301-8000 or email Grill.Marie@mayo.edu (RESULTS) Patient research: NIH supported research is being conducted by the Rare Disease Clinical Research Network on the impact that the COVID pandemic is having on people living with rare diseases. You do NOT have to have been tested for COVID or have had symptoms of illness, the only criteria is to be under 90 years old and to have a rare disease. Caretakers or parents of children with rare diseases are also encouraged to participate. Read more about the goals of the study and the process at this link: A summary of the survey results can be found here: https://www.rarediseasesnetwork.org/news/2021-02-10-COVID19-survey-preliminary-results ************************************************* COMPLETE WITH RESULTS: Clinical Trial: Dr. Satish Raj and the University of Calgary is recruiting POTS patients for a study of the effects of compression on the symptoms of POTS https://www.jacc.org/doi/10.1016/j.jacc.2020.11.040 ***RECRUITING: DINET has partnered with PCORI (Patient-Centered Outcomes Research Institute), the University of Pittsburgh and the University of Pittsburgh Medical Center in the Story Booth project. Research is crucial to helping us further our understanding of POTS and other forms of dysautonomia and to identify ways to prevent or cure these conditions. That's why DINET is parterning with the Patient-Centered Outcomes Research Institute (PCORI) and the University of Pittsburgh on their MyPaTH Story Booth Project. The project aims to help researchers better understand the dysautonomia patient experience with illness, coping and the healthcare system. Researchers hope their findings will lead to the development of reserach studies that address topics that are important to patients and caregivers. Please visit our Story Booth page for more detailed information or to get started sharing your story. https://www.dinet.org/member-stories/story-booth-project-sharing-the-stories-of-patients-and-caregivers-r209/ CLOSED: (results pending) John Hopkins University is examining the use of a temporary celiac ganglion block before celiac ganglion resection in dysautonomia-related bowel dysmotility. Autonomic celiac ganglia resection has been shown to alleviate symptoms of dysautonomia-related dysmotility by interrupting the sympathetic stimulation to the GI system. Currently there has been no test to confirm this diagnosis pre-surgery. This studies objection is to temporarily block the ganglion to see if the symptoms go away, therefore confirming diagnosis and allowing for the more permanent surgical action. This study is recruiting patients with chronic dysmotility who are considering Celiac Ganglion resection. For further criteria and information about this study, please visit: https://clinicaltrials.gov/ct2/show/NCT04121338?term=Dysautonomia&draw=2&rank=3 Contacts: Christos Georgiades, MD PHD cgeorgi@jhmi.edu Beatriz Kohler, bkohler@jhmi.edu RECRUITING: Vanderbilt University is conducting a study entitled "Pathophysiology and therapy of Orthostatic Intolerance." Studies to identify the role of the brain, the autonomic nervous system and the vasculature in Orthostatic Intolerance. Blood pressure and HR are measured laying down and standing at regular intervals. Blood samples are drawn for hormones affecting blood pressure control. Some studies require tilt table testing and medication administration. Eligibility: All participants are adults. Contact Information: Principles: David Robertson, M.D., Bonnie Black, RN Vanderbilt University, Clinical Research Center Nashville, TN FAX: 615-343-8649 email: ADCResearch@vanderbilt.edu OPEN ENROLLMENT: The Mayo Clinic is conducting a study to better understand the causes of autonomic disorders. The study includes the collection of DNA for future studies. This study is being conducted in part by Dr. Philip Low, one of the leading researchers in this field. Eligibility: Males and females (non-pregnant) age 13 years and older diagnosed with MSA, PAF, Autonomic Neuropathies, NOH, POTS, Dysautonomia and healthy participants. Orthostatic range must include a systolic BP deduction of > 30 mm Hg or mean BP reduction of > 20 mm Hg that occurs within 3 mins of head-up tilt. For help understanding the criteria or for more information about the study, please contact Tonette Gehrking CAP at gehrking.tonette@mayo.edu or call 507-284-4462 Participating Clinics: Rochester, Minnesota. RECRUITING: Parent-Child Dyadic Experiences Living with Postural Orthostatic Tachycardia Syndrome (POTS) during Emerging Adulthood. What is it like living with POTS during emerging adulthood? Virginia Tech wants to know. If you are interested in joining a family science study on POTS, please contact Masumeh@vt.edu. Participants must be 18-29 years old, diagnosed with POTS. This is a parent-child study, so both must be willing to participate. Participants must reside in the U.S. Virginia Polytechnic Institute and State University Department of Human Development Principal Investigator: Dr. Carolyn Shivers Co-Investigator: Masumeh Farchtchi Contact: Masumeh@vt.edu Specifics about the study and a consent form will be emailed to you if you are interested. Recruiting: Vitamin D Deficiency in Dysautonomia In previous work the investigator identified a group of children between the ages of 10-18 years whose diagnostic workup for chronic nausea unexplained by conventional diagnostic tests has unexpectedly revealed underlying cardiovascular instability manifesting as orthostatic intolerance, primarily defined as postural orthostatic tachycardia syndrome (POTS) (88%). While this is an atypical initial presentation for orthostatic intolerance in general, the investigator believes that the cardiovascular problem is serious and represents a cause of nausea in a majority of these individuals, as treatment of the POTS with fludrocortisone reduced the symptoms of nausea. While fludrocortisone treatment abrogates the fall in baroreflex sensitivity (BRS) during tilt in part, it did not completely correct the tachycardia symptoms or the BRS suppression during HUT. Furthermore, it caused an elevation in MAP in a supine position, which may lead to future cardiovascular problems such as early onset hypertension and cardiac hypertrophy. This argues for a different treatment approach. The investigator presents preliminary data in this application revealing that OI subjects tend to have lower 25-hydroxyvitamin D (25(OH)D) compared to non OI subjects. Open to children 10 - 18 https://clinicaltrials.gov/ct2/show/NCT03032328?recrs=a&cond=Dysautonomia&cntry=US&draw=1&rank=13 Recruiting: A Study of Pyridostigmine in Postural Tachycardia Syndrome. This is a 3-day study being conducted by the Mayo Clinic comparing pyridostigmine vs placebo in the treatment of POTS. Researchers expect pyridostigmine to improve tachycardia and stabilize blood pressure. Eligibility: Diagnosis of Postural Tachycardia Syndrome using the following criteria: Orthostatic heart rate increment greater than or equal to 30 beats per minute (BPM) within 5 minutes of head-up tilt. Symptoms of orthostatic intolerance. These include weakness, lightheadedness blurred vision, nausea, palpitations, and difficulty with concentration and thinking. Both criteria must be fulfilled See study online for exclusions and further information http://www.mayo.edu/research/clinical-trials/cls-20128843 Mayo Clinic location, Rochester MINN, Principal Investigator: Dr. Philip Low Contact: Tonette Gehrking, CAP, 507-284-4462, gehrking.tonette@mayo.edu Recruiting: ME/CFS Activity Patterns and Autonomic Dysfunction The purpose of this study is to identify daily activity patterns, negative life events and autonomic abnormalities that may be related to non-improvement in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For both naturalistic studies and behavioral intervention trials, roughly 50% of patients report worsening or unchanged illness. The proposed four-year study would be the first to look at the relationship between illness non-improvement, patient activities at home and autonomic function. Our long-range goal is to identify physiological signals and activity patterns that predict non-improvement and relapse and develop a self-management program that prescribes improvement-linked behaviors and discourages non-improvement activities. Contact: Particia Bruckenthal, PhD, RN 631-444-1172 particia.bruckenthal@stonybrook.edu Contact: Jenna Adamowicz, MA 631-371-4417 jenna.adamowicz@stonybrook.edu https://clinicaltrials.gov/ct2/show/NCT02948556?recrs=a&amp;cond=Dysautonomia&amp;cntry=US&amp;draw=1 STILL RECRUITING: Study 2: Norepinephrine Transporter Blockade, “Autonomic Failure” This study is supported by The Food and Drug Administration’s Office of Orphan Product development. , We are testing whether we can repurpose an available drug (atomoxetine) as a treatment for neurogenic orthostatic hypotension (nOH). This study is also open to patients with MSA, pure autonomic failure (PAF), and Parkinson disease (PD) with OH. Eligibility: 40 to 80 years old, any gender, with Neurogenic Orthostatic Hypotension (defined by a reduction of > 30 mmHg drop in SBP within 3 minutes of standing, associated with impaired autonomic reflexes as assessed by autonomic function tests. Estimated completion date: July 2020 Contact: Bonnie Black, RN, 615-*343-6862, bonnie.black@vanderbilt.edu Contact: Jose Martinez, 212-263-7225, Jose.Martinez@nyumc.org See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02784535 NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/ Recruiting: Vagal Stimulation in POTS - The Autonomic Inflammatory Reflex (Pilot 3) The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your earlobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm. Eligibility: Participants must be female between the ages of 18-45 diagnosed with POTS. See Study for further information and exclusions: https://www.rarediseasesnetwork.org/cms/autonomic/6111 This study is a part of the Rare Disease Clinical Research Network and the Autonomic Disorders Consortium Contact: Vanderbilt University Medical Center Nashville Misty Hale CCRP, 615-322-2931, misty.hale@Vanderbilt.edu Still Recruiting: Two new studies open for patients with MSA The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA. Both compounds work by enhancing the body’s levels of norepinephrine. Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University. NYU Dysautonomia Center and Vanderbilt are longtime collaborative partners in rare autonomic disorders. NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/ Recruiting: The Big POTS Survey is still recruiting This study’s lead investigator is Dr. Satish Raj MD MSCI, Adjunct Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center. Dr. Rah says that the information collected as part of this survey “will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families.” Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International. DI is sponsoring this survey. https://redcap.vanderbilt.edu/surveys/?s=9rB9NkqMrC%20%20 COMPLETED: The investigators propose to conduct a safety, tolerability and early proof of concept efficacy study of phosphatidylserine in patients with FD. The long-term goal is to find an effection nutritional therapy that will improve the quality of life for patients with FD and alter disease prognosis Contact & participation information is available - https://clinicaltrials.gov/ct2/show/NCT02276716?cond=Dysautonomia&rank=5 ACTIVE NOT RECRUITING: Clinical Trial: University of Oklahoma and Vanderbilt University are recruiting POTS patients for the Autoimmune Basis for Postural Tachycardia Syndrome study. They are looking at the levels of immune proteins (autoantibodies) in POTS patients and their relation to symptoms over time. https://clinicaltrials.gov/ct2/show/NCT02725060?term=autonomic+dysfunction&cond=Postural+Orthostatic+Tachycardia+Syndrome&rank=5 CLOSED: Clarkson University is conducting a study to learn about what factors affect the function and quality of life for people living with various chronic illnesses. The study should take approximately 45 minutes to complete and asks similar questions to those asked by healthcare providers. Questions will include quality of sleep, fatigue, pain, etc. All answers will be anonymous. Participants must be 18 years or older. Each person participating is requested to ask one healthy person to also participate but this is not required. To learn more about this study or to begin the questionnaire, visit https://www.surveymonkey.com/r/V3P7S9J This is an IRB exempt study. COMPLETED: University of CA is studying the effect of the drug Ivabradine, a drug currently used for heart failure, to examine the possibility of its use as a treatment for heart rate issues in POTS patients. University of CA, San Diego Investigator: Pam Taub, MD For more information: https://clinicaltrials.gov/ct2/show/NCT03182725?cond=Postural+Orthostatic+Tachycardia+Syndrome&rank=3 Completed, Results TBA PET Imaging Study of Neurochemical and Autonomic disorders in Multiple System Atrophy (MSA) from the University of Michigan. This study aims to better understand the patterns and timings of nerve degeneration relatively early on and how it affects symptoms and progression. Eligibility: 30 - 80 years old Gender: AllSubject: diagnosis of MSA or probable MSA of the Parkisonion subtype (MSA-P) or Cerebellar subtype (MSA-C), Subject must be willing and able to give informed consent. Normal cognition as assessed by MiniMental State Examination Timeline: Less than 4 years from the time of documented diagnosis See study online for exclusions and further information. https://clinicaltrials.gov/ct2/show/study/NCT02035761?recrs=ab&cond=Dysautonomia+Orthostatic+Hypotension+Syndrome&rank=4 Contacts: Arijit K Bhaumik, B.A. CCRP, 734-936-8281 arijit@umich.edu Edna Rose, Ph.D., RN, MSW, BC, 734-936-7359, ednarose@umich.edu Estimated Primary Completion Date: July 2018 (Completed, Results TBA) The Safety and Tolerability of Kinetin, in Patients with Familial Dysautonomia The overall objective of this study is to assess the safety and tolerability of administering kinetin in patients with FD. The specific aim of this proposal is to determine the safety of a once-daily dose of kinetin in patients with FD using a dose ascending titration and to determine the long-term safety and tolerability during 3-years of receiving a maximum tolerated steady state dose of kinetin. The investigators hope to also demonstrate early proof of concept that kinetin enhances the ability of the neuronal tissue to correctly splice IKAP mRNA. Eligibility: Male or female 16 years of age and older, confirmed a diagnosis of familial dysautonomia by genetic testing, written informed consent to participate in the trial and understanding that they can withdraw consent at any time without affecting their future care. And the ability to comply with the requirements of the study procedures. See study for more info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02274051?cond=Dysautonomia&rank=3 New York University School of Medicine Estimated Completion date: September 2019 Contact: Horacio Kaufmann MD, 212-263-7225,horacio.kaufmann@nyumc.org Contact: Jose Martinez, MA, 212-263-7225, jose.martinez@nyumc.org (CLOSED RECRUITMENT) Study 1: A Phase 2 Study to Assess the Effect and Safety of TD-9855 in Subjects with Neurogenic Orthostatic Hypotension This Study is in collaboration with Theravance Biopharma R & D They are testing the acute efficacy and safety of a new compound (TD-9855) in improving blood pressure and reducing orthostatic symptoms in patients that have neurogenic orthostatic hypotension (nOH), which includes those with MSA. This study is also open to patients with Pure Autonomic Failure (PAF) and Parkinson’s Disease (PD) with NOH. Eligibility: 40 years and older, All Genders Diagnosed with symptomatic orthostatic hypotension due to Parkinson’s disease, MSA or PAF (ie.neurogenic orthostatic hypotension) At screening, a subject must meet the diagnostic criteria of neurogenic orthostatic hypotension, as demonstrated by a > 30 mm Hg drop in systolic blood pressure (SBP) within 5 minutes of standing. Impaired autonomic reflexes, as determined by the absence of BP overshoot during phase IV of the Valsalva maneuver, in subjects where Valsalva is performs as appropriate. For the optional open-label extension study subjects must have demonstrated a pressor effect and completed dosing in Cohort 1. Estimated completion date: June 2018 (Completed, results not yet published) See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02705755

Featured below are ongoing studies related to dysautonomia and POTS related illnesses. DINET does its best to select the studies that we believe will best appeal to our community. If you know of a study that you would like to share with DINET, please email the information with the link to the study, to webmaster@dinet.org All information will be reviewed. Open Recruitment Studies (updated February 2019) RECRUITING: Clinical Trial: University of Oklahoma and Vanderbilt University are recruiting POTS patients for the Autoimmune Basis for Postural Tachycardia Syndrome study. They are looking at the levels of immune proteins (autoantibodies) in POTS patients and their relation to symptoms over time. Read more about the trial RECRUITING: Clinical Trial: Dr. Satish Raj and the University of Calgary is recruiting POTS patients for a study of the effects of compression on the symptoms of POTS. Read more about the trial Recruiting: Vitamin D Deficiency in Dysautonomia In previous work the investigator identified a group of children between the ages of 10-18 years whose diagnostic workup for chronic nausea unexplained by conventional diagnostic tests has unexpectedly revealed underlying cardiovascular instability manifesting as orthostatic intolerance, primarily defined as postural orthostatic tachycardia syndrome (POTS) (88%). While this is an atypical initial presentation for orthostatic intolerance in general, the investigator believes that the cardiovascular problem is serious and represents a cause of nausea in a majority of these individuals, as treatment of the POTS with fludrocortisone reduced the symptoms of nausea. While fludrocortisone treatment abrogates the fall in baroreflex sensitivity (BRS) during tilt in part, it did not completely correct the tachycardia symptoms or the BRS suppression during HUT. Furthermore, it caused an elevation in MAP in a supine position, which may lead to future cardiovascular problems such as early onset hypertension and cardiac hypertrophy. This argues for a different treatment approach. The investigator presents preliminary data in this application revealing that OI subjects tend to have lower 25-hydroxyvitamin D (25(OH)D) compared to non OI subjects. Open to children 10 - 18 https://clinicaltrials.gov/ct2/show/NCT03032328?recrs=a&cond=Dysautonomia&cntry=US&draw=1&rank=13 Still Recruiting: ME/CFS Activity Patterns and Autonomic Dysfunction The purpose of this study is to identify daily activity patterns, negative life events and autonomic abnormalities that may be related to non-improvement in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For both naturalistic studies and behavioral intervention trials, roughly 50% of patients report worsening or unchanged illness. The proposed four-year study would be the first to look at the relationship between illness non-improvement, patient activities at home and autonomic function. Our long-range goal is to identify physiological signals and activity patterns that predict non-improvement and relapse and develop a self-management program that prescribes improvement-linked behaviors and discourages non-improvement activities. Contact: Particia Bruckenthal, PhD, RN 631-444-1172 particia.bruckenthal@stonybrook.edu Contact: Jenna Adamowicz, MA 631-371-4417 jenna.adamowicz@stonybrook.edu https://clinicaltrials.gov/ct2/show/NCT02948556?recrs=a&amp;cond=Dysautonomia&amp;cntry=US&amp;draw=1 Recruiting: The investigators propose to conduct a safety, tolerability and early proof of concept efficacy study of phosphatidylserine in patients with FD. The long-term goal is to find an effection nutritional therapy that will improve the quality of life for patients with FD and alter disease prognosis Contact & participation information is available - https://clinicaltrials.gov/ct2/show/NCT02276716?cond=Dysautonomia&rank=5 Recruiting: PET Imaging Study of Neurochemical and Autonomic disorders in Multiple System Atrophy (MSA) from the University of Michigan. This study aims to better understand the patterns and timings of nerve degeneration relatively early on and how it affects symptoms and progression. Eligibility: 30 - 80 years old Gender: AllSubject: diagnosis of MSA or probable MSA of the Parkisonion subtype (MSA-P) or Cerebellar subtype (MSA-C), Subject must be willing and able to give informed consent. Normal cognition as assessed by MiniMental State Examination Timeline: Less than 4 years from the time of documented diagnosis See study online for exclusions and further information. https://clinicaltrials.gov/ct2/show/study/NCT02035761?recrs=ab&cond=Dysautonomia+Orthostatic+Hypotension+Syndrome&rank=4 Contacts: Arijit K Bhaumik, B.A. CCRP, 734-936-8281 arijit@umich.edu Edna Rose, Ph.D., RN, MSW, BC, 734-936-7359, ednarose@umich.edu Estimated Primary Completion Date: July 2018 Recruiting: A Study of Pyridostigmine in Postural Tachycardia Syndrome. This is a 3-day study being conducted by the Mayo Clinic comparing pyridostigmine vs placebo in the treatment of POTS. Researchers expect pyridostigmine to improve tachycardia and stabilize blood pressure. Eligibility: Diagnosis of Postural Tachycardia Syndrome using the following criteria: Orthostatic heart rate increment greater than or equal to 30 beats per minute (BPM) within 5 minutes of head-up tilt. Symptoms of orthostatic intolerance. These include weakness, lightheadedness blurred vision, nausea, palpitations, and difficulty with concentration and thinking. Both criteria must be fulfilled See study online for exclusions and further information http://www.mayo.edu/research/clinical-trials/cls-20128843 Mayo Clinic location, Rochester MINN, Principal Investigator: Dr. Philip Low Contact: Tonette Gehrking, CAP, 507-284-4462, gehrking.tonette@mayo.edu Recruiting: The Safety and Tolerability of Kinetin, in Patients with Familial Dysautonomia The overall objective of this study is to assess the safety and tolerability of administering kinetin in patients with FD. The specific aim of this proposal is to determine the safety of a once-daily dose of kinetin in patients with FD using a dose ascending titration and to determine the long-term safety and tolerability during 3-years of receiving a maximum tolerated steady state dose of kinetin. The investigators hope to also demonstrate early proof of concept that kinetin enhances the ability of the neuronal tissue to correctly splice IKAP mRNA. Eligibility: Male or female 16 years of age and older, confirmed a diagnosis of familial dysautonomia by genetic testing, written informed consent to participate in the trial and understanding that they can withdraw consent at any time without affecting their future care. And the ability to comply with the requirements of the study procedures. See study for more info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02274051?cond=Dysautonomia&rank=3 New York University School of Medicine Estimated Completion date: September 2019 Contact: Horacio Kaufmann MD, 212-263-7225,horacio.kaufmann@nyumc.org Contact: Jose Martinez, MA, 212-263-7225, jose.martinez@nyumc.org Recruiting: Two new studies open for patients with MSA The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA. Both compounds work by enhancing the body’s levels of norepinephrine. Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University. NYU Dysautonomia Center and Vanderbilt are longtime collaborative partners in rare autonomic disorders. Study 1: A Phase 2 Study to Assess the Effect and Safety of TD-9855 in Subjects with Neurogenic Orthostatic Hypotension This Study is in collaboration with Theravance Biopharma R & D They are testing the acute efficacy and safety of a new compound (TD-9855) in improving blood pressure and reducing orthostatic symptoms in patients that have neurogenic orthostatic hypotension (nOH), which includes those with MSA. This study is also open to patients with Pure Autonomic Failure (PAF) and Parkinson’s Disease (PD) with NOH. Eligibility: 40 years and older, All Genders Diagnosed with symptomatic orthostatic hypotension due to Parkinson’s disease, MSA or PAF (ie.neurogenic orthostatic hypotension) At screening, a subject must meet the diagnostic criteria of neurogenic orthostatic hypotension, as demonstrated by a > 30 mm Hg drop in systolic blood pressure (SBP) within 5 minutes of standing. Impaired autonomic reflexes, as determined by the absence of BP overshoot during phase IV of the Valsalva maneuver, in subjects where Valsalva is performs as appropriate. For the optional open-label extension study subjects must have demonstrated a pressor effect and completed dosing in Cohort 1. Estimated completion date: June 2018 See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02705755 NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/ Study 2: Norepinephrine Transporter Blockade, “Autonomic Failure” This study is supported by The Food and Drug Administration’s Office of Orphan Product development. , We are testing whether we can repurpose an available drug (atomoxetine) as a treatment for neurogenic orthostatic hypotension (nOH). This study is also open to patients with MSA, pure autonomic failure (PAF), and Parkinson disease (PD) with OH. Eligibility: 40 to 80 years old, any gender, with Neurogenic Orthostatic Hypotension (defined by a reduction of > 30 mmHg drop in SBP within 3 minutes of standing, associated with impaired autonomic reflexes as assessed by autonomic function tests. Estimated completion date: July 2020 Contact: Bonnie Black, RN, 615-*343-6862, bonnie.black@vanderbilt.edu Contact: Jose Martinez, 212-263-7225, Jose.Martinez@nyumc.org See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02784535 NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/ Recruiting: Vagal Stimulation in POTS - The Autonomic Inflammatory Reflex (Pilot 3) The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your earlobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm. Eligibility: Participants must be female between the ages of 18-45 diagnosed with POTS. See Study for further information and exclusions: https://www.rarediseasesnetwork.org/cms/autonomic/6111 This study is a part of the Rare Disease Clinical Research Network and the Autonomic Disorders Consortium Contact: Vanderbilt University Medical Center Nashville Misty Hale CCRP, 615-322-2931, misty.hale@Vanderbilt.edu Recruiting: The Big POTS Survey is still recruiting This study’s lead investigator is Dr. Satish Raj MD MSCI, Adjunct Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center. Dr. Rah says that the information collected as part of this survey “will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families.” Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International. DI is sponsoring this survey. https://redcap.vanderbilt.edu/surveys/?s=9rB9NkqMrC%20%20

Children Dysautonomia information geared toward children can be found at: The Children's Heart Institute: http://www.childrensheartinstitute.org/ Dysautonomia Youth Network of America: http://www.dynakids.org Nationwide Children's Hospital: http://www.nationwidechildrens.org/postural-orthostatic-tachycardia-syndrome-clinic Children's Hospital of Chicago: https://www.luriechildrens.org/en-us/care-services/specialties-services/center-for-autonomic-medicine/diagnosis-treatments/Pages/inpatient-outpatient-treatment.aspx Chronic Illness Rest Ministries: http://www.mychronicillness.com/ Disability Social Security Administration's Adult listing of Impairments: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm Social Security Administration's Childhood Listing of Impairments: https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm Apply for Social Security Online (Adult): https://www.ssa.gov/disabilityssi/ Apply for Social Security Online (child): https://www.ssa.gov/disabilityssi/apply-child.html Disability Secrets: http://www.disabilitysecrets.com/ Florida Woman Claims she was Unfairly Denied Unum Payments: http://www.chattanoogan.com/articles/article_29001.asp National Organization on Disability: http://www.nod.org Online Lawyer Source http://www.onlinelawyersource.com/social-security-disability/index.html Employment Job Accommodation Network: http://janweb.icdi.wvu.edu/ U.S. Department of Labor Office of Disability Employment Policy: http://www.dol.gov/odep/ Medical Bills Giving a Chance Foundation (for members with Chiari I Malformation, Syringomyelia, Basilar Invagination, Tethered Cord, Ehlers Danlos, Hereditary Disorders of the Connective Tissue, Pseudotumor Cerebri, etc.) http://www.givingachance.org/ Medication Find prescription drug programs for which you may qualify: https://www.pparx.org/Intro.php Transportation Air Care Alliance: www.aircareall.org Angel Flight: www.angelflightamerica.org The National Patient Air Transport Helpline: http://www.patienttravel.org/ *This page is a work in progress. New links will continually be added. If you would like to volunteer to find links to add to this page, please let us know .