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What Causes POTS?

By edriscoll, in POTS,

POTS symptoms can occur due to many different abnormalities in the body. Some disorders associated with POTS symptoms have been identified. Many of the causes of POTS still remain unknown. It can be difficult to distinguish between the causes and effects of this disorder, which further complicates matters.  
There are a multitude of disorders that can produce POTS-like symptoms. It is important that physicians attempt to find possible causes of a patient's orthostatic intolerance, as many secondary disorders are treatable. Some of the entities that may be contributing to one's orthostatic intolerance include: 
Adrenal disorders, such as Addison's disease,can produce symptoms that mimic POTS. 
Anemia patients sometimes exhibit the symptoms of POTS (Nand, Mohan, Khosla & Kumar, 1989). Some patients may have folic acid deficiency, which is contributing to their anemia and POTS symptoms. 
POTS patients may have a form of hidden anemia where the standard tests, such as hemoglobin and hematocrit, are relatively normal even though the patient has a severe anemia (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). A formal radioisotope dilution assessment of blood volumes was required to discover the red blood cell volume deficit documented in a 2005 study of POTS patients (Raj, et. al, 2005). The authors of this study state that it is possible a deficit in erythropoietin production might play a pathophysiological role in POTS, although this is not yet clear.
Angiotensin II has been found to be increased in some people with postural orthostatic tachycardia syndrome. The results from one study imply impaired catabolism of Angiotensin II through the angiotensin-converting enzyme 2 pathway. Vasoconstriction in POTS may result from a reduction in Ang-(1-7) and an increase in angiotensin II (Stewart, Ocon, Clarke, Taneja & Medow, 2009).
The angiotensin II type I receptor gene may be responsible for some orthostatic disorders.The NIH has researched vascular responsiveness in subjects with polymorphisms of the angiotensin II type I receptor gene. Angiotensin II is a hormone that constricts blood vessels by attaching to a protein on the blood vessels. People can have a variety of forms of this protein. Researchers have looked for differences in the gene that makes this protein to determine if these genetic differences have any effect on blood pressure.
Autoimmune disorders,such as Guillain-Barre (NIH.gov) and lupus are suspected of causing POTS symptoms in some individuals. 
Researchers have discovered an antibody to neuronal nicotinic acetylcholine receptors of autonomic ganglia (Vernino, Low, Fealey, Stewart, Farrugia & Lennon, 2000).  Some people with POTS have an antibody titer test that is positive to this antibody. Patients with orthostatic intolerance, anhidrosis, constipation, urinary dysfunction, sjogrens syndrome and pupillary dysfunction had higher antibody titers than subjects that did not (Gibbons & Freeman, 2009). Patients with the highest levels of these ganglionic-receptor-binding antibodies have the most severe autonomic dysfunction. Physicians have discovered that antibody levels lower as some patients improve, which suggests a cause and effect relationship. Patients interested in being tested for the ganglionic antibody should have their physician contact:
Mayo Clinic Laboratories
1-800-533-1710
mcl@mayo.edu
Cardiac atrophy has been pinpointed as the cause of orthostatic intolerance in astronauts. Research has shown that astronauts' hearts actually shrink and stiffen due to the reduced blood volume caused by microgravity (Mitka, 2002). Researchers want to find out if the cardiac atrophy is entirely reversible, and if the loss of mass can reach a point where it leads to catastrophic consequences (Healthline Scripts: Cardiac Atrophy, 1998). This finding may have implications for people who develop orthostatic intolerance due to being bedridden. Whether or not the finding can be applied to a percentage of patients who develop orthostatic intolerance for other reasons has yet to be proven. 
Cardiac disease can cause POTS symptoms. Most physicians are quick to rule cardiac disease out.
Cardiac electrophysiologic property abnormalities may be occurring in some POTS patients. Data from one study suggests abnormalities of atrioventricular conduction and ventricular repolarization in some patients with POTS (Singer, Shen, Opfer-Gehrking, McPhee, Hilz, & Low, 2003). The investigating physicians of this study concluded that these findings may reflect intrinsic cardiac electrophysiologic abnormalities or may be secondary due to abnormalities of cardiac autonomic innervation.
Another study suggested a primary sinus node abnormality could be present in a subset of POTS patients (Singer, Shen, Opfer-Gehrking, McPhee, Hilz & Low, 2002). Abnormal rate-dependent P-wave axis behavior has been observed in a small subset of POTS patients. This could be interpreted as a primary sinus node abnormality. However, several publications caution against ablating POTS patients.
A Mayo clinic study reported short-term success in five of seven ablated patients with inappropriate sinus tachycardia and postural orthostatic tachycardia features (Shen, Low, Jahangir, Munger, Friedman, Osborn, Stanton, Packer, Rea & Hammill, 2001). However, long-term outcomes were disappointing in these patients. None of the patients experienced complete eradication of symptoms. A follow-up evaluation showed no vast improvement in symptoms, despite better heart rate control. A later publication states "in our laboratory, sinus node modification, total sinus node ablation, or atrioventricular nodal ablation is not recommended for patients with inappropriate sinus tachycardia who have autonomic evidence of postural orthostatic tachycardia" (Shen, 2002).
Ablations have reportedly been detrimental to some POTS patients who were misdiagnosed as having inappropriate sinus tachycardia. After the apparently successful elimination of their "sinus tachycardia", they were left with profound orthostatic hypotension (Grubb & Karas, 1999).
Cervical stenosis is a condition in which the spinal canal is too narrow, causing compression of the spinal cord and nerve roots. It was once reported that POTS patients with cervical stenosis may benefit from craniovertebral decompression (Rosner, D'Amour & Rowe, 1999). A few patients have reported a decrease or resolution in POTS symptoms after undergoing surgery to correct this condition. Yet other patients have not had any decrease in POTS symptoms after undergoing surgery to correct cervical stenosis. Some physicians are convinced that cervical stenosis can cause POTS, others debate the relationship.
Chemical exposure may cause POTS symptoms in some individuals. Researchers at Johns Hopkins University have tested Gulf War vets to see if they have neurally mediated hypotension or POTS. The study aimed to find out if environmental factors such as pesticides, vaccinations or infections are associated with having POTS.
Chiari malformation is a condition in which the cerebellar tonsils protrude down into the spinal cord. This can restrict the flow of cerebral spinal fluid. The symptoms of Chiari are similar to those of POTS. A number of Chiari patients have reported being diagnosed with POTS. Some of these patients proclaim a decrease or resolution in POTS symptoms after undergoing surgical correction of their Chiari malformation. Other POTS patients with Chiari malformation have not experienced any benefits from corrective surgery. Some physicians are convinced that Chiari malformation is a cause of POTS, others doubt the relationship.
CSF leaks are characterized by a severe headache that becomes worse when upright.  This is a key factor in Spinal CSF leaks, but it is also a symptom in POTS patients and they are frequently confused. However, recent research has discovered that patients with CSF frequently have POTS as well, further making the diagnostic process difficult.  Since all patients with CSF have orthostatic intolerance related to POTS, there is a danger that further investigation may stop there, causing missed exploration into a CSF leak.  Read more 
Diabetes can produce the symptoms of POTS (Llamas, Garcia, Gaos, Jimenez, Villavicencio, Cueto & Arriaga, 1985). There are different types of diabetes, including diabetes insipidus, that are associated with POTS symptoms. Read more 
Ehlers-Danlos Syndrome (EDS), a connective tissue disorder, is found in some POTS patients. Physicians propose that these syndromes occur together due to abnormal connective tissue in dependent blood vessels in those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures (Rowe, Barron, Calkins, Maumenee, Tong & Geraghty, 1999).Simply put, this connective tissue abnormality allows excessive amount of blood to pool in these patients' lower limbs when they stand up.  
There are a variety of types of Ehlers-Danlos syndrome. Classical and Hypermobile EDS (hEDS) were originally reported in orthostatic intolerance patients (Rowe et al., 1999). Many POTS patients with EDS have hEDS (Grubb, 2002).
The classical form of Ehlers-Danlos syndrome (types I and II) is characterized by soft, hyperextensible skin; easy bruising; poor wound healing; thin, atrophic scars; hypermobile joints; varicose veins and prematurity of affected newborns (Wenstrup & Hoechstetter, 2001). Mutations in type V collagen are a major cause of the classical type of Ehlers-Danlos syndrome.
Clinical features associated with hEDS include soft skin and large and small joint hypermobility (Wenstrup & Hoechstetter, 2001). Skin may be stretchy but scarring tends to be normal. POTS patients with hEDS are often hypermoblie/hyperflexable, double jointed, pale, female and tend to have blond hair and blue eyes (Grubb, 2002). The genetic basis for hEDS is unknown.
A wide variety of medical complications may occur with the classical and hypermobile types of EDS. Mitral valve prolapse can occur in all types of EDS and delayed gastric emptying has been observed in hEDS (personal observations, Wenstrup & Hoechstetter, 2001). A significant number of individuals with both the classical form and the hypermobile form have dilation and/or rupture of the ascending aorta (Saliba E et al. 2015, Rozado J et al. 2017). Hiatal hernia has been widely reported in adults with EDS (Nelson, Mouchli Valentin, et al 2015) Read more. As previously stated, premature rupture of the membranes in pregnancy (primarily classical type) and poor wound healing (particularly with severe classical type) may occur. Other complications include a mild to moderate increase in peripartum bleeding, joint dislocations, chronic pain (most common in the hypermobile type), surgical complications and intraoperative problems (more common in the classical than hypermobile type), diverticulitis, problems associated with fragile skin (particularly with the classical type) and motor delay (Leganger, Soborg, Mortensen, et al 2016)Read more.
One study on patients with "joint hypermobility syndrome", a disorder similar if not identical to hEDS, showed that 78% had signs of dysautonomia, such as orthostatic hypotension, postural orthostatic tachycardia syndrome and uncategorized orthostatic intolerance (Gazit, Nahir, Grahame, & Jacob, 2003). These patients also had evidence of a-adrenergic and B-adrenergic hyperresponsiveness. The authors of this study note that patients with the joint hypermobility syndrome have apparently intact vagal control of heart rate with disturbed sympathetic function. They further state that "the sympathetic dysregulation associated with joint hypermobility syndrome may have several explanations, such as peripheral neuropathy, blood pooling in the lower limbs, impaired central sympathetic control, or deconditioning due to muscle disuse through pain or fear of pain".
Another study of one hundred and seventy women with joint hypermobility syndrome concluded that non-musculoskeletal symptoms are common in patients with joint hypermobility syndrome, and that individuals with these symptoms may express more fatigue, anxiety, migraine, flushing, night sweats, and poor sleep than their peers (Hakim & Grahame, 2004). Read more
A group of conditions related to joint hypermobility are hypermobility spectrum disorders (HSD).  HSD is diagnosed after all other conditions are rules out, such as EDS and hEDS. HSD can be equal in severity to hEDS and calls for similar care and management.  Read more about HSD
Read more about EDS through these links
Electrical injury has reportedly occurred prior to the development of POTS in a couple of cases (Kanjwal, Karabin, Kanjwal & Grubb, 2009).
Gastric bypass surgery may cause orthostatic intolerance in some individuals.
Lesions of the autonomic nervous system might be causing POTS in some individuals. Research shows that animals become dysautonomic by selectively lesioning postganglionic sympathetic neurons (Carson, Appalsamy, Diedrich, Davis & Robertson, 2001).
Liver disease may contribue to orthostatic intolerance. Compensated Cirrhosis is a condition in which the liver is damaged but is able to compensate for it. This condition coincides with hypovolemia and vasodilation. POTS, as well as peripheral blood pooling and decreased arterial tone, has been found in some patients (Hartleb, Rudzki, Karpel, Becker, Waluga, Boldys, Nowak & Nowak, 1979). 
Mast-cell activation disorders may play a role in the development of POTS in some individuals. Some patients with orthostatic intolerance suffer from episodes of flushing, palpitations, shortness of breath, chest discomfort, headache, lightheadedness, hypotension or hypertension and occasionally syncope (Jacob & Biaggioni, 1999). Exercise may trigger an attack (Shibao, Arzubiaga, Roberts, Raj, Black, Harris & Biaggioni, 2005). Patients may complain of increased fatigue, sleepiness, increased urination and/or diarrhea after an attack (Jacob & Biaggioni, 1999). Symptoms of orthostatic intolerance often worsen after an episode. An increase in urinary methylhistamine, a marker of mast-cell activation, can be found in these patients.
Mast-cell activation results in the release of the vasodilator histamine, which may contribute to symptoms of POTS. Other mast cell mediators, such as plasma prostaglandin 2, may contribute to symptoms as well. Urinary histamine is often measured in the evaluation of flushing, but it is less specific than methylhistamine and not useful in the diagnosis of mast-cell activation (Shibao et al., 2005). Patients should be instructed to collect urine for a 4-hour period immediately after a severe spontaneous flushing episode. Urinary methylhistamine is usually normal between episodes in patients with mast-cell activation disorders, although the patients may experience chronic fatigue and orthostatic intolerance between episodes, which can lead to a disabling condition (Shibao et al., 2005).
Beta blockers should be used with caution, if at all, in those with mast-cell activation disorders (Shibao et al., 2005). Beta blockers may trigger mast-cell activation.
Read more about MCAS
Mitochondrial disease is sometimes found in patients who present with autonomic dysfunction. Read more
Neuropathy may be involved in the development of POTS in some individuals. One study showed that POTS may be, in part, a manifestation of autonomic cardiac neuropathy (Haensch, Lerch, Schlemmer, Jigalin & Isenmann, 2009). Sympathetic denervation of the legs might be the cause of POTS in some patients as well. 
Nitric Oxide deficit may play a role in POTS symptoms. Nitric Oxide (NO) is a very simple molecule whose job it is to control blood vessel size with changes in blood flow, changes in blood vessels during inflammation and blood vessel leakiness (Stewart, 2005). Some POTS patients have a deficit of nitric oxide (Stewart, Taneja, Glover & Medow, 2008.). This deficit may relate to the nitric oxide synthase molecule called nNOS, but it also has a compelling relationship with the hormone angiotensin-II.Together angiotensin-II and  NO may help to regulate sympathetic nerve activity in the brain and also in certain peripheral nerves (such as the splanchnic circulation). Moreover, angiotensin-II can result in increased oxidative stress which can itself reduce NO (Dr. Julian Stewart, personal communication, November 28, 2007).
Researchers have found that NO levels can be increased by blocking the most important receptor for angiotensin-II. This may lead to treatments in the future in select groups of POTS patients.
Norepinephrine transporter deficiency is thought to cause POTS in some patients. These patients have an abnormality in the clearance of norepinephrine from the synaptic cleft. The body normally recycles norepinephrine. The protein that recycles norepinephrine doesn't work well in people with the norepinephrine transporter deficiency (Grubb, 2002). Excessive amounts of norepinephrine is spilled over. These people soon become depleted of norepinephrine if the neuron is continually stimulated (Grubb, 2002). They go from having excessive amounts of norepinephrine to having no norepinephrine, at which point they crash. Read More
Other researchers have reportedly discovered hypermethylation of the norepinephrine transporter (NET) gene promoter in POTS patients (Esler, Alvarenga, Pier, Richards, El-Osta, Barton, Haikerwal, Kaye, Schlaich, Guo, Jennings, Socratous & Lambert, 2006) In these patients, the gene for the protein that transports norepinephrine (NET) is turned off because its promoter is turned off. Further studies are being conducted to determine whether hypermethylation of the NET gene promoter is a mechanism or cause of POTS.
The nutcracker phenomenon has reportedly produced POTS symptoms in some individuals. Nutcracker phenomenon (NC) is the congestion of the left renal vein due to its compression by the aorta and the superior mesenteric artery (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The main and common findings of one study on pediatric NC patients were chronic fatigue associated with orthostatic hypotension and/or postural tachycardia (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The authors of this study point out that "the originally reported symptom of NC is renal bleeding. However, reported 'renal bleeding' patients, including ours, have no complaints of chronic fatigue and our 'chronic fatigue' (NC) patients have no renal bleeding". Some of these patients did report fibromyalgia type pain. Some patients had proteinuria, others had no urinary abnormalities. 
The authors of this study explain the various ways in which NC might affect autonomic function: First, severe congestion in the kidney may cause the expansion of the renal venous bed, which would affect the renin-angiotensin system. Secondly, severe congestion in the adrenal medulla, which is innervated by sympathetic nerves, may disturb a complex set of central neural connections controlling the sympathoadrenal system. On the other hand, overproduction or night retention of catecholamines might be responsible for the various symptoms of pediatric chronic fatigue syndrome (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The nutcracker phenomenon occurs in adults as well as children. Transluminal balloon angioplasty has successfully been used to treat compression of the left renal vein between the aorta and superior mesenteric artery (Takahashi, Sano & Matsuo, 2000). 
The methods used to diagnose nutcracker phenomenon include Doppler US, MRI and three-dimensional helical computed tomography. Dr. Takahashi (personal communication, September 8, 2002) explains the procedures for testing as follows: Conventional ultrasound requires patients to be examined for left renal vein obstruction in 4 positions: supine, semisitting, upright and prone. Nonvisualization of the left renal vein lumen or absence of the left renal vein wall between the aorta and superior mesenteric artery is regarded as signifying left renal vein obstruction. Doppler color flow imaging can be used to locate a blue-colored blood stream flowing to the dorsal direction. This is a collateral vein flowing from the left renal vein into the paravertebral vein. With MRI, oblique coronal images along the left renal vein, and also axial images, are recommended to visualize the collateral veins around the left renal vein. 
The relationship between headaches and nutcracker syndrome is explored in a recent study (Stuberrud, Cheema, et al 2020) Read more
Nutritional deficiencies can lead to autonomic dysfunction. The B vitamins 1, 3, 6, and 12 have been reportedly linked to dysautonomia symptoms (Autonomic Dysfunction, 2000). Folic acid deficiency (B9) can also cause POTS symptoms.
Other neurological conditions, such as multiple sclerosis, are sometimes associated with autonomic dysfunction.
Parasites can transmit diseases, such as Chagas, that can cause POTS symptoms. Some patients report developing POTS after having Lyme disease. 
Porphyrias have been associated with POTS symptoms (Stewart & Hensley, 1981). Porphyrias are rare, mainly genetic disorders that affect the body's ability to make hemoglobin. They are caused by deficiencies in enzymes involved in the synthesis of heme. Porphyria patients are often overly sensitive to sunlight. 
It is important for physicians to rule out porphyrias before prescribing medication to POTS patients. Some medications that are considered unsafe for porphyria patients are used to treat dysautonomia. Read more
Syringomyelia is a condition in which a cyst grows within the spinal cord. POTS can occur in patients with this condition. Syringomyelia is similar to POTS in that it usually occurs between the ages of 25 and 40, it can have a sudden onset, some patients have Chiari malformation and some patients may experience long periods of stability. The symptoms of syringomyelia can worsen with straining or any activity that causes cerebrospinal fluid to fluctuate. Many POTS patients also report a worsening of symptoms upon straining. Partial sympathetic denervation of the legs in those with syringomyelia might explain the occasional occurrence of postural tachycardia syndrome (NINDS Syringomyelia Information Page, 2020). Read more
Tumors can lead to autonomic dysfunction. Tumors, such as pheochromocytoma and neuroblastoma, can secrete catecholamines that affect the autonomic system. Pelvic ganglioneuroma is another type of tumor that has also been associated with autonomic dysfunction (Gentile, Rainero, Luda & Pinessi, 2001). Tumors can cause compression, which directly affects the autonomic nervous system. Tumors are also capable of having a paraneoplastic effect on the ANS by producing autoantibodies against acetylcholine receptors in the autonomic ganglia (Mayo Clinic Fact Sheet, 2020). 
Thyroid disease can cause symptoms that are similar to those of POTS.
Viruses are thought to be the provoking factor in approximately 50% of POTS patients (Low & Schondorf, 1997, p. 279). There are reports of dysautonomia occurring after the Epstein-Barr virus (Itoh, Oishi, Ohnishi, Murai & Imawatari, 1993). Viruses may directly affect the autonomic nervous system or lead to an immune pathogenesis (Grubb, 2000). Roughly one-half of post-viral POTS patients will make a good practical recovery over a 2-5 year period (Grubb, Kanjwal & Kosinski, 2006).
These are but a few of the possible causes of POTS symptoms. More information on causes of autonomic dysfunction can be located at the National Dysautonomia Research Foundation.
 
References
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(2009).   Defects in cutaneous angiotensin-converting enzyme 2 and angiotensin-(1-7)   production in postural tachycardia syndrome. Hypertension.   53(5), 767-774. PubMed   35. Stewart, J. M., Taneja, I., Glover, J., & Medow, M. S. (2008).   Angiotensin II type 1 receptor blockade corrects cutaneous nitric   oxide deficit in postural tachycardia syndrome. American Journal of   Physiology. Heart and Circulatory Physiology. 294(1), H466-73. PubMed     36. Stewart, P. M., & Hensley, W. J. (1981). An acute attack of variegate    porphyria complicated by severe autonomic neuropathy. Australian    and New Zealand Journal of Medicine, 11(1), 82-83.   PMID: 6941785 [PubMed - indexed for MEDLINE]     37. Takahashi, Y., Ohta, S., Sano, A., Kuroda, Y., Kaji, Y., Matusuki, M., &    Matsuo, M. (2000). Does severe nutcracker phenomenon cause pediatric   chronic fatigue? Clinical Nephrology, 53, 174-181.    PMID: 10749295 [PubMed - indexed for MEDLINE]     38. Takahashi, Y., Sano, A., Matsuo, M. (2000). An effective "transluminal    balloon  angioplasty" therapy for pediatric chronic fatigue syndrome with    nutcracker phenomenon. Clinical Nephrology, 53, 77-78.   PMID: 10661488 [PubMed - indexed for MEDLINE]     39. Wenstrup, R. J., & Hoechstetter, L. B. (2001). The Ehlers-Danlos syndromes.   In S. B. Cassidy & J. E. Allanson (Eds.) , Management of genetic   syndromes (pp. 131-149). New York: Wiley-Liss, Inc.     40. Vernino, S., Low, P. A., Fealey, R. D., Stewart, J. D., Farrugia, G., &     Lennon, V. A. (2000). Autoantibodies to Ganglionic Acetylcholine 
  Receptors in Autoimmune Autonomic Neuropathies. The New England    Journal of Medicine, 343, 847-855.   
http://content.nejm.org/cgi/content/abstract/343/12/847
 
 
     

edriscoll

POTS Myths

By edriscoll, in POTS,

As with many disorders that have received little research, there are numerous false assumptions made about POTS. Many of these assumptions stem from the lack of information available about this disorder. This page was created in hopes of clarifying some of these false assumptions. Suggestions for this page can be sent to: Dysautonomia Information Network
Myth: POTS symptoms only occur while standing.
Many patients report symptoms occurring while sitting or lying down. Standing does exacerbate symptoms.
Myth: Everyone with POTS faints.
Many people with POTS have never fainted.
Myth: POTS symptoms are present at all times.
The symptoms of POTS can vary greatly from day to day and hour to hour.  
Myth: Most doctors will be competent in treating POTS patients.
Some doctors have never even heard of POTS. It is essential to one's well being to seek out a specialist.
Myth: People get POTS because they are lazy and deconditioned.
People can get POTS symptoms due to prolonged bed rest, however the symptoms should diminish as the person becomes more active. The origins of chronic orthostatic intolerance are certainly distinct from laziness or deconditioning.
To read about the causes of POTS, please see our article "What causes POTS?"  https://www.dinet.org/info/pots/what-causes-pots-r98/
 

edriscoll
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 
*****COVID-19 STUDIES:  
(Recruiting) Neurology research: New research study conducted by Dr. Blitshteyn to examine the impact of COVID-19 on patients with pre-existing neurological disorders including POTS, OH, MSA, Neuropathy and Chronic Migraine. The study includes a 5 min anonymous survey that a patients neurologist would fill out.  Please share this survey with your neurologist if you have tested positive for COVID-19 and you are being treated by a neurologist for the disorders listed. 
https://patientscount.org
(CLOSED) 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: https://www.rarediseasesnetwork.org/COVIDsurvey
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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/
RECRUITING:  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&cond=Dysautonomia&cntry=US&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 
 
 

edriscoll
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.

edriscoll
2020 has been a strange and difficult year thus far.  So, we want to use this October to honor the struggles, pain, and growth that have occurred this year, while also continuing with our mission to increase awareness of dysautonomia, and the everyday experiences of people living with dysautonomia. 
How to get involved
We are proud Spoonies!  
Spread awareness and have fun.   
Take a photo of yourself with a spoon on your nose (it's a lot easier than it looks!) and share it on Facebook or Instagram with the hashtag #DINETspoonie and #SpoonieChallenge. If you aren't already following DINET, follow us on Facebook and our new Instagram page @DINETorg.     Don't stop there - tag 3 friends to share the challenge with you and increase your chances to win.  The more you share, the further the awareness spreads!  We will randomly select a weekly winner from all entries. Each winner will receive a custom DINET facemask (they're awesome!), along with a DINET tote bag.   GRAND PRIZE - At the end of the month, a Grand Prize Winner will be selected to be the DINET Awareness Feature!  As the 2020 winner,  an article will be written about you and your journey living life with dysautonomia - how you were diagnosed, how your life has changed and the message you most want people to know about living with dysautonomia.  Your story will be featured on our website and our Facebook page and the story will become a permanent part of the DINET website.  The personal stories on our site are an important part of the support new members find when coming to our site for the first time.  You can be a part of that support and education.  
Anyone can enter and win the weekly challenge, however, if a friend or family member is drawn for the Grand Prize, the story and feature will be focused on the person living with dysautonomia.  
Follow us on Facebook
Masks for Awareness
Make sure the only thing being spread this October is Awareness!  When you purchase a DINET mask on our website, you will be spreading awareness AND helping other communities at the same time! How? ALL of the proceeds from mask sales will go toward donating masks to organizations around the country that work with people who are chronically ill, have little or no health insurance, and/or have difficulty accessing healthcare. We have also committed to sharing vital information about dysautonomia with these organizations and their patrons so that undiagnosed people who don’t have access to specialized medical care may be able to learn about the condition and advocate for testing.  $10 per mask (Includes shipping)  Buy a mask today!
Living with Dysautonomia
We are so excited that we will be launching a new section on our website, Living with Dysautonomia, filled with TONS of tips, ideas, and support for addressing day-to-day aspects of living with dysautonomia. This October we will share at least 15 new articles filled with practical information about mental health, work, disability resources, service animals, emotional support animals, technology, and education.    AND our YouTube channel - Chronic Corner - will debut three new videos about different aspects of symptom management. If you haven't visited the channel yet, there are 18 original videos about POTS, other types of Dysautonomia, management and lifestyle issues. You don't want to miss it!    Other things you can do to help   Help with a donation to DINET.  Your generous donations go towards providing our web services, maintaining our patient forum, providing printed materials, producing original videos, newsletters and multiple special projects to benefit the dysautonomia community and to help educate medical communities about dysautonomia.   There is no amount too small to be helpful.  Please consider a donation, it is greatly appreciated.  Donate today. Print information from our website or request printed materials from us to give to medical professionals in your area, for support groups, for educators - coaches, school nurses and other people who interact with your teenage child and to give to family and friends to help them better understand your struggle. Join or start a local support group or begin a private support group  online. Participate in or begin a fundraiser for an organization or project that supports the dysautonomia community.   Whatever you choose to do, please reach out and spread the word.  

Pistol
By Susanne Rimm
Okay – let's be real. We are tired, dizzy, sick to our stomachs; we can’t stand up but are not supposed to lie down all day, can’t think straight, can’t talk long, can’t stop peeing. We either sleep too much or not at all, our stomachs are too lazy or too active, our gut is irritable and  so is our mood.  Heat is our enemy but we seek warmth when the trembling chills get ahold of us.  Our HR and BP are happily occupied on a rollercoaster WITHOUT supervision … and I haven’t even started on what a BAD day is like! 
Our doctors are either frustrated or ignorant,  labeling  us as either mentally ill or hypochondriacs. People around us think we are victims of our vivid imaginations or want for attention ( as if !!! ) and I won’t even mention the hateful stares I get when I dare to use the motorized wheelchair in Walmart when I am so young and perceived to be healthy.
So we take our pills, eat our salt, drink fluids and squeeze ourselves willingly into our hose ( no. I’m not talking about skinny jeans .. ) - just to make it through another day. But what if there was something else, some things that we could try on OUR time, at OUR tolerance, at OUR convenience … what if there were more things to try that might help us manage our symptoms? 
As I researched information for this article I found a wealth of alternative methods and treatment options that may help ease some of our symptoms. Of course I am not claiming there is a cure, but there are things we can take and do to improve our quality of life.  Before we take a look at our options, it is important to remember to consult your physician before making any changes to your treatment or health care plan. Now let’s get started. 
Diet
What we eat is equally important to how we eat it. When we eat a meal the parasympathetic branch of the autonomic nervous system activates and increases circulation in the gut, causing us to feel tired and sleepy after a big meal. In dysautonomia patients this can backfire and cause the sympathetic branch to try to compensate and hence wreak havoc on our symptoms. That is why it is important to eat not only healthy choices but also to avoid big meals. 
It is generally recommended that 6 or more snacks a day are gentler on us than 3 big meals. Despite our need to drink a lot of fluids we should avoid drinking DURING a meal and save our drink for afterwards.  Eating consciously, slowly and chewing well helps with foods being more easily digested. Chewing helps to break down food and predigest it with enzymes in saliva. Drinking will dilute these enzymes and therefore require more effort in digestion. 
Generally speaking carbs are more difficult to digest than other foods. This especially includes sugars, pasta, breads etc. Anything made from white flour can be especially hard to digest and it  is also void of beneficial nutrients and fiber. Small helpings of nutrient-rich grains such as whole wheat flour, oats, certain rice types, barley, quinoa etc are filled with healthy nutrients and easier to digest. Nuts and healthy oils such as Avocado, Olive Oil, Nut butters etc are recommended. High amounts of protein ( as you can find in lean meats, eggs, beans, nuts etc )  are generally preferred. 
In addition to what we should eat there are also recommendations as to what we should avoid: alcohol, caffeine and sugars are some examples. Of course each person may need to avoid other foods that could be causing allergies or reactions, like dairy, gluten, high acid foods etc.  In people with illness affecting their kidney function, high protein diets need to be avoided also.  
Always consult with your medical team before making major changes to your diet.  If you are concerned about reactions or sensitivities you may have noticed with foods, consider keeping a food diary for a few weeks to help you track any changes you may experience.  
More on POTS  and diet can be found here
https://bit.ly/363oRg9
Supplements and Herbal Preparations
There are no herbs or supplements approved by the FDA, and, as with medications, what is helpful for one may do harm to another. The effectiveness of herbs has not been proven and all herbs or supplements need to be approved by a physician since they can impact the effectiveness of medications  The following listing of herbs is not to be confused with treatment suggestions, it is simply a list of substances that can have an effect on the ANS and may actually be harmful if taken by POTS patients.
Valerian Root
This herb has a generally calming effect on the nervous system and may or may not help with insomnia, attention deficit, anxiety, and CFS. Prior to modern medicine it was used to treat a condition called “Hysteria”. 
Butcher’s Broom
This herb got its strange name due to its tough branches, which butchers used to clean off their contaminated surfaces. It is said to have anti-inflammatory effects and is thought to constrict veins, therefore aiding in returning blood to the heart. This is the reason it was used for both fainting and the treatment of hemorrhoids. 
Hawthorne Berry
This small fruit has been used for thousands of years in traditional chinese medicine and is native to North America. It contains antioxidants that are said to be anti-inflammatory. It is a vasodilator and therefore can lower blood pressure, and its mildly sedative effects may reduce anxiety. Since Hawthorne contains fiber it is also used to aid in digestive problems.  
Vitamins and Minerals
Dysautonomia patients are often deficient in certain vitamins. Vitamin B 12 has an effect on the brain and nerves, therefore a lack of it can cause a wide range of symptoms.  Numbness, tingling, memory loss, cognitive issues, muscle weakness, dizziness, palpitations,tachycardia, nausea, and diarrhea are just some of the symptoms this deficiency can cause. B 12 supplements come in different forms such as oral, sublingual, subcutaneous and intramuscular preparations. Levels considered to be normal are 200-900 ng/ml. 
Vitamin D  is another vitamin that appears low in some dysautonomia patients. It is a substance required by the body for calcium absorption which is responsible for bone growth, cell growth and immune system functioning. 90% of the Vitamin D needed by the body is made by sun exposure, so it is difficult to get enough Vitamin D in our diet alone. Vitamin D deficiency can cause fatigue, hair loss, depression, frequent infections, memory loss and more. A normal level of Vitamin D is 20-50 ng/ml. 
Another substance that can be low in dysautonomia patients is Ferritin.  Ferritin is a protein that helps the body store iron, therefore a lack of it can indicate anemia. Symptoms of low Ferritin can include rapid heartbeat, lethargy and weakness, hair loss, bruising and, oddly, the desire to eat non-food items (Pica). Normal levels of ferritin are 12-300ng/ml for males and 12-150 ng/ml for females. 
Physical Therapy
Author’s note: the following information was collected in an interview with Ben Rittenhouse, DPT
1a) What are exercises or methods you recommend to prevent or combat deconditioning for someone who is exercise intolerant to upright exercises? 
1b) What exercises will strengthen leg muscles and venous return? 
Deconditioning is a definite concern with patients that have POTS. In general, exercises that engage the larger muscle groups of the lower body will enhance venous return.  Even simple exercises such as ankle pumps may be a starting point for some patients with a low tolerance. The goal is to work up to activities such as recumbent biking and eventually a walking or swimming program. Exercise is one the best ways to promote venous return and begin to allow the body to tolerate more upright postures. Peripheral veins have one-way valves that direct blood flow back to the heart. As muscles are engaged, they act as a pump to help that process. A progressive exercise program is one of the best ways to combat deconditioning.
2a) CFS (Chronic Fatigue Syndrome) can be a companion disorder to POTS - do you know of any methods used in your occupation to improve wakefulness and energy?
2b) POTS affects both HR and BP - are you aware of any interventions to improve circulation to the brain 
Exercise increases blood flow to the brain as well as the muscles. This helps enhance oxygenation to the brain and can improve alertness. Research is showing us that exercise can improve mental clarity, creativity, memory, and mental health. Several years ago, the American College of Sports Medicine coined the phrase “Exercise is Medicine.” This is very true when addressing symptoms of POTS. Exercise can be one of the best “medicines.”
3) Elevated norepinephrine levels cause a constant state of fight-or-flight, which causes a lot of tension in the muscles and often causes coat hanger syndrome in POTS patients. What treatments can patients do at home to relax the muscles without using medications? Particularly treatments that are not dependent on using cold or hot techniques since patients are frequently cold and heat intolerant.    
People may find that they can have relief with techniques such as deep breathing exercises or meditation to help address muscle tension and stress associated with POTS. Overall, resting in a recliner is better than lying down flat as the goal is to slowly and steadily increase the tolerance to upright positions. However, cervical pain may need to be examined by a healthcare professional to rule out other musculoskeletal contributors.
 4) What can you recommend for patients who want to exercise but have orthostatic hypotension?  
Although this can pose a challenge, I would encourage patients to start slow, find their baseline and work up from there. It is important to have a good home blood pressure cuff to be able to monitor the BP and also pay extra attention to symptoms to maintain safety. Often patients are hesitant to exercise with orthostatic hypotension but exercise is usually one of the best treatments.
 5) Does trigger point release cause relaxation of the muscles or does it tighten them?  
Often trigger point release can be very effective in helping muscles relax. However, people have different levels of tolerance to techniques such as TPR. Due to the “fight or flight” nature that you mentioned, I find this is sometimes difficult for patients to tolerate.  Instruments such as a Theracane can allow patients to be in control which can help reduce adverse effects in POTS. In some cases, dry needling can also provide relief from trigger points as well. 
Overall, exercise and physical therapy can be great treatments to address POTS. I would recommend that anyone who struggles with positional tachycardia be assisted in beginning a program by a physical therapist. A progressive exercise program can be very helpful and effective in addressing positional difficulties and often give someone handles in managing their symptoms.
Chiropractic care
Author’s note: The information in this chapter had been provided by Sherri “Dr Sherri” Collett, practicing family chiropractor.
Dr. Sherri Collett:  Chiropractic Care addresses the nervous system. Gentle Chiropractic care can affect the ANS, which is primarily affected in people with POTS. Chiropractic helps the body to regulate itself – when it is free of misalignments that may be interfering with the nervous transmissions to the rest of the body. It is a natural way of allowing the body to heal itself, from within. 
Massage is also a gentle way of stimulating the nervous system through the musculoskeletal system. I highly recommend massage therapy for people that suffer from POTS.
Make sure your Chiropractor  and the Massage Therapist are familiar with the symptoms of POTS since Chiropractic and Massage have been known to affect Blood pressure after treatment. 
Yoga
Author’s note: The following answers were provided by Rita, a POTS sufferer, YOGA fan and valued DINET forum member.
As someone who has POTS and practices Yoga – how would you describe the positive effects of this type of exercise? 
In my view it has all the benefits of other forms of exercise, but it is extremely POTS friendly for a number of reasons: 
It gets your blood circulating and increases your HR, but not at the same level as cardio. I don’t get any “ Exercise hangover “ headaches and tachycardia as I did with cardio. 
It builds strength
In certain types of Yoga there is a focus on breathing deeply – which is good for POTS. 
Many exercises can be done in a seated or lying position. Which triggers fewer symptoms. 
There is very little equipment involved.
You don’t need to leave your home ( although you  learn faster and more intensely in a studio ) and you can set your own timing and duration. 
The classes themselves – if you do the right type of yoga – are very calming and relaxing, with soft music etc, which makes them quite POTS friendly
Can it help people with brain fog to focus better? 
Similar to cardio, if done regularly I feel more alert and better overall. Yoga is shown to improve concentration because you have to focus on learning and holding poses. 
Does it help even if just done for a few minutes by people who cannot exercise long? 
Yes! I started out very slowly doing the stretch video below. But in order to improve I think you have to be able to push yourself to do more over time. 
Are there any particular positions that help with leg strength and circulation?
Most of the positions help with circulation, and most – other than the warm-up and cool-down exercises – would help with muscle strength. You really use your arms, legs and core. 
Are there any books or websites you recommend? 
I accidentally discovered Yoga through a video called “AM/PM Stretch for Health”, which I randomly bought based on reviews on Amazon. I’d gone to a stretch class at the local gym and wanted to do more at home. The video showed a downward-dog pose and I realized the stretches were actually Yoga. Since I felt so much better from all of the stretches I wanted to try more. 
I learned Yoga by taking classes in a studio.  Finding the right classes with the best style of yoga ( focused on alignment vs weightless vs work-out ) and the right teacher ( gentle and forgiving ) really helped me. You have to be careful in choosing videos and classes when you are first starting out.  Many of the classes and videos can be very vigorous and difficult to handle as a beginner. 
This video is from one of the studios where I took classes - YOGA WORKS. This gives you an idea of what a beginner video is like. You may be able to find more beginner videos online.   
https://www.youtube.com/watch?v=LFYZNChcCOA
Other methods of exercising and meditating
There are many more ways to use mindfulness as well as physical exercise to calm down our ANS. Deep breathing exercises for example have been proven to be very effective. An introduction to simple deep breathing exercises can be found here: 
https://www.therapistaid.com/therapy-video/deep-breathing-exercise
Qi-Gong is a way to exercise the mind, body, and spirit, similar to Tai Chi.  Both forms of exercise use deep breathing at the heart of the movements.  My sister suffers from HPOTS which causes exercise and orthostatic intolerance.  She practices Qi-Gong and  finds this form of exercise very helpful.  Here is a video she recommends: 
https://youtu.be/xBoCrEswHvQ
Acupuncture
There is very little information about this form of traditional Chinese medicine’s effects on dysautonomia. Commonly, acupuncture ( inserting needles into designated points of the skin )  is performed to help with pain relief, overall wellness and stress relief. The original theory behind this practice is that inserting a combination of  needles into specific points in the body creates balance allowing energy to flow freely.
In western medicine however, the needles are thought to stimulate nerves and therefore redirect pain impulses. 
Counseling
Personally I have found counseling, or talking with any person that can listen, to be quite helpful in dealing with the challenges of POTS. The frustrations and feelings of uselessness that I encountered after losing my job and independence as a result of POTS naturally caused depression, as well as anxiety related to my symptoms ( fainting and seizures ). At that time, I realized there was no way I could deal with these feelings on my own. I sought help from a friend who was also a trauma counselor and well  equipped to help me deal with my situation. 
Simply talking about our feelings, putting them into words and realizing that these feelings are a normal result of the limitations we face from chronic illness can be a huge relief. When facing any chronic and debilitating illness we have to face the fact that we are losing a lot of the abilities we had taken for granted. This naturally can force us to deal with all the stages of grief, I know I did. And acceptance, the last stage, can be the hardest to achieve. For me, acknowledging my weaknesses; facing my feelings of anger, despair and fear were a part of the process.  In the end, I realized there was nothing I, or anyone else, could do to change the reality of POTS.  I had to go through these stages in order to accept it and to be able to live with POTS and to work on developing a way to thrive in this new reality. Talking to an understanding and experienced counselor, and even to my best friend at times, has helped me immensely. 
Editor’s note:  If you are struggling with depression or suicidal thoughts, you need immediate, professional attention.  Please contact the National Suicide Prevention Association at www.suicidepreventionlifeline.org or call the 24/7 hotline at 1-800-273-8255
Resources and References
https://www.nhlbi.nih.gov/
https://www.drugs.com/
https://www.mayoclinic.org/tests-procedures/acupuncture/about/pac-20392763
https://facty.com/ailments/body/10-painful-conditions-your-chiropractor-can-treat-today/10/
For more information about this topic and related information, visit:
POTS What helps?
Mental Health & Chronic Illness

Pistol
There is very little literature about the effects of POTS on pregnancy. There is far more studies related to the effects of pregnancy on POTS patients and their symptoms. However, to put anxious minds at ease, there has been no significant change in maternal or fetal related complications and 60% of patients remained stable or improved during pregnancy (Blitshteyn et al., 2012).
According to current research 2/3 of women experience improvement of symptoms in the second and third trimester and 1/3 of women develop worsening symptoms. There does not appear to be a difference between first-time pregnancies versus multiple pregnancies and there is no evidence of adverse events in pregnant women with POTS. POTS does not pose an increased risk for pregnancy or birth. (Kanjwal et al.,2009)
Physiological changes in pregnancy
In the first trimester, there is a 50% increase in blood volume to supply the vascular system of the uterus, an increase in cardiac output and peripheral vasodilation. There is a decreased sensitivity to vasoconstrictors such as angiotensin and norepinephrine and an increased production of vasodilators like nitric oxide and prostacyclin. (Goodman et al., 1982; Gant et al., 1980) This can increase the acute symptoms of POTS in the first trimester, such as tachycardia, lightheadedness, fatigue and even syncope as well as other symptoms of POTS. Still, 60% of patients remained stable or reported improved symptoms during pregnancy (Blitshteyn et. al., 2012)
Treatment of POTS in pregnancy
The treatment of POTS in pregnancy is highly individualized and based on symptom relief. It is recommended that general guidelines for POTS treatment be used during pregnancy. (Sheldon et al., 2015)
Usual first-line treatments are:
Exercise - 25 to 30 minutes of mild exercises per week, avoiding upright posture (swimming or recumbent bike are recommended and better tolerated) and exercises performed lying on the left side to minimize compression of the vena cava.   Oral hydration of 2 l of water daily as well as increased salt intake of 3 - 5 gm sodium per day except if hypertension is present or pregnancy is high risk for hypertension. Compression garments can be helpful and are covered by most insurance plans with a prescription.  There are also compression stockings specifically designed for use during pregnancy. Medications during pregnancy
Whenever possible patients have weaned off medications during pregnancy. For patients with debilitating POTS symptoms, particularly patients with recurring syncope, medications can be safely prescribed. (Ruzieh, Grubb, December 2018)
Some of the more commonly prescribed are ( not limited to )
Midodrine - trialed in pregnant patients with POTS with no adverse maternal or fetal outcome (Kanjwal et al., 2009: Glatter et al., 2005) Beta Blockers - such as Propanolol were found to be effective on lessening symptoms without adverse reactions (Raj et al., 2009)   Fludrocortisone - used by Kanjwal et al., 2009 in a pregnant patient with POTS with no significant adverse effects. In patients who are not fully helped with the above solutions, Duloxetine and Venlafaxine can be added with particular benefit to patients who suffer from symptoms of fatigue and anxiety. Pyridostigmine may improve tachycardia in POTS patients (Raj et al., 2005; Kanjwal et al., 2011).  However, Pyridostigmine also increases bowel motility. Therefore, although it does not have adverse reactions specific to pregnancy, it is not tolerated in many patients due to multiple GI side effects (Kanjwal et al., 2011) IV fluids  - infusing 1 L of normal saline over 1-2 hours weekly may be helpful in refractory cases.  It can then be increased or decreased on an individual basis as needed. If IV Fluids are used, it is recommended that it be done on an outpatient basis and to minimize the risk of infections and thrombosis, the use of central lines and infusion ports should be avoided. (Ruzieh, Grubb, December 2018) Bedrest - partial bedrest may be recommended in patients with recurring syncope or falls. Intrapartum
There are no special considerations for vaginal delivery vs C-section. Both can be carried out successfully without complications. The choice for what is used should be made solely based on obstetrics. (Glatter et al., 2005; Powless et al., 2010; Blitshteyn et al., 2012; Lide, Haeri 2015)  No evidence was found to favor one method or type of anesthesia used - regional vs general vs none. Also, an epidural injection was found to be safe and didn’t trigger POTS symptoms. The birth method or anesthesia used should not be influenced by a POTS diagnosis. It should be solely based on Obstetrician’s recommendations. (Corbett et al., 2006)
Postpartum
Some women experience worsening of symptoms and others find rapid improvement of symptoms after delivery but the majority of women remain stable. Breastfeeding is safe and encouraged, however, caution should be taken if medications are being used to treat POTS symptoms during pregnancy and potentially transfer to breast milk.  (Bernal et al., 2016)
Conclusion
According to current research, there is no long term impact of pregnancy on POTS and POTS does not pose an increased risk for pregnancy or birth. HUTT testing is safe during pregnancy.
It is recommended that patients with debilitating POTS symptoms consult with a high-risk obstetrician, and any obstetrician treating a POTS patient should take the time to learn about POTS and dysautonomia in general as well as the medications used to treat it.  
Special note for POTS patients with EDS:  Pregnant women living with EDS and POTS are at a higher risk for maternal and fetal complications. Therefore these patients require more monitoring and closer follow up (Jones, Ng 208; Sorokin et al., 1994)
For help in gathering or printing materials for your obstetrician, please contact webmaster@dinet.org
Resources
Ruzieh Mohammed, Grubb Blair P., Overview of the management of Postural Orthostatic Tachycardia Syndrome in pregnant patients, Autonomic Neuroscience, Vol 215, Full Text https://www.sciencedirect.com/science/article/pii/S1566070217303442

Goldstec
DINET has always been grounded by the principle of support.  In alignment with our mission of support, we believe Black Lives Matter and support organizations, movements and people working to reduce racism, discrimination, prejudice, violence and systemic injustice in our country and throughout the world.
And, as an organization that believes wholeheartedly in advancing healthcare for our members who live with dysautonomia, we must acknowledge that we have not done a good job recognizing the inequities in healthcare experienced by Black Americans day in and day out, including those who live with dysautonomia. 
We are sorry to our Black members, brothers, and sisters for not joining the conversation sooner.  We are listening.  We will keep educating ourselves.  And, as we continue to work toward our goal of a more equitable healthcare system, we will be conscientious about recognizing the particular healthcare inequities faced by Black Americans. 
Sincerely,
DINET Board of Directors and Administrators
*Thanks to Chelsea Goldstein for the compilation of resources and research contained in this article.
Below is a list of resources we are using to further our education on racial disparities in healthcare:
Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington
Communities in Action: Pathways to Health Equity by the National Academies of Science, Engineering, and Medicine
Rare Diseases and African Americans by Black Health Matters
The Overlooked History of Black Disabled People by Vilissa Thompson
Understanding and Addressing Racial Disparities in Healthcare by David Williams and Toni Rucker
African American Health by the CDC
The Burdens of Race and History on Black People’s Health 400 Years After Jamestown by Stephen B. Thomas and Erica Casper
The Tuskegee Timeline by the CDC
Race, History, and the Science of Health Inequities by Sandro Galea

COVID-19 & Racial Disparities:
COVID-19 United States Breakdown by Black Ladies in Public Health 
Racism and Inequality in the Face of COVID-19: Viruses Don’t Discriminate, But We Do a webinar moderated by Jamila Taylor
Coronavirus in African Americans and Other People of Color by Sherita Hill Golden
Spotlight on COVID-19 and Health Disparities: Opportunities to Achieve Better Understanding and Equality for Vulnerable Populations by Eliseo J. Pérez-Stable
COVID-19 and Racial/Ethnic Disparities by Monica Webb Hooper, Anna María Nápoles, and Eliseo J. Pérez-Stable
 
Organizations that work toward health equity:
Society for the Analysis of African American Public Health Issues 
Black Ladies in Public Health 
National Institute on Minority Health and Health Disparities 
Healthy African American Families 
Black Women’s Health Imperative 
"
 
 
 
 
 
 

edriscoll
COVID-19 Research: study conducted by Dr. Blitshteyn for Neurologists treating a variety of dysautonomia disorders.  Also, patient research conducted the Rare Disease Network for people living  with rare diseases, whether you have had any exposure to COVID or not.  Visit our Recruitment Studies page for info on both studies.
Statement from Dr. Peter Rowe, Director of Children's Center CFS Clinic, John Hopkins Univ. School of Medicine on COVID-19 and CFS and OI
Dysautonomia and Coronavirus - an article by Dr. Blitshteyn, one of DINET's medical advisers. 
COVID-19 Part 2 - Article by Dr. Blitshteyn, Director and Founder of the Dysautonomia Clinic.  This article tells you what to do now.
From DINET:  We live with chronic illness - tips for COVID-19 isolation  then join the forum to weigh in with your tips - POTS is like cabin fever
Important information you need to know about face masks
From the Global Genes and the Rare Disease Network
Government Updates
World Health Organization: Rolling Updates on COVID-19 World Health Organization: COVID-19 Online Courses Centers for Disease Control & Prevention: Guidelines for people at High Risk Centers for Medicare and Medicaid Services: Current Emergencies Centers for Medicare and Medicaid Services: Coronavirus (COVID-19) Partner Toolkit Cambridge Rare Disease: Current UK NHS & Government Information & Guidance City of Little Rock: Experiencing symptoms related to COVID-19? City of Little Rock: ¿Tiene síntomas relacionados con COVID-19? (Spanish) Food & Drug Administration:COVID-19 What’s New and Fast Facts National Institutes of Health: COVID-19 Updates World Health Organization: Coronavirus Information Centers for Disease Control & Prevention: Coronavirus Information Center U.S. Government: State Health Department Directory Coronavirus (COVID-19) Education & Information
Día de la Mujer Latina: Dispelling the Myths and Rumors of the New Coronavirus Disease (Webinar) Día de la Mujer Latina: Disipando los Mitos y Rumores del Nuevo Coronavirus (Webinario) GRIN2B Foundation: Flip Book Social Story SCN2A Australia: Podcast on COVID and Epilepsy Coronavirus Support Network: FAQ (English) Coronavirus Support Network: FAQ (Spanish) Coronavirus Support Network: FAQ (Portuguese) National Health Council: COVID-9 Preparedness for people with chronic disease (Webinar) Association of Community Cancer Centers: COVID-19 Resource Center American Society of Clinical Oncology: Coronavirus Resources American Academy of Neurology: COVID-19 Neurology Resource American Thoracic Society: Public Health Information Sheet American Thoracic Society: COVID-19 FAQ Financial Assistance 
Laughing at My Nightmare: COVID-19 Resource Relief Arkansas Community Foundation: Arkansas COVID Relief Fund Virtual Networking
Ehlers-Danios Society: Virtual Chat Rooms Twitter QA: #spooniechat Our Odyssey: Online Meetups The Mighty: Come Hang with the Mighty Events Support Services
Robert Wood Johnson Foundation Culture of Health Leaders: Coronavirus Support Network Global Healthy Living Foundation: COVID-19 Support Program for Chronic Disease Patients and Their Families Cancer Support Community: What Cancer Patients, Survivors, and Caregivers Need to Know About the Coronavirus Mental Health
Centers for Disease Control & Prevention: Managing Stress and Anxiety During COVID-19 Happy: Online Mental Health Support Talking to Kids
Kids Health, Nemours: How to Talk to Your Kids About COVID-9 KinderCare: Talking to Children About Coronavirus At Home Teaching Resources
District Administration: Free K-12 Resources We Are Teachers: 130+ Amazing Online Learning Resources Diagnosis, Treatments & Vaccines
Milken Institute, FasterCures: COVID-19 Treatment and Vaccine U.S. Food & Drug Administration: Clinical Trial Guidance Mindray: COVID-19 Clinical Diagnostics Webinar Episode 1 Mindray: COVID-19 Clinical Diagnostics Webinar Episode 2 Mindray: COVID-19 Clinical Diagnostics Webinar Episode 3 Mindray: COVID-19 Experts Dialogues Coverage & Benefits
Centers for Medicare & Medicaid Services: Coverage & Benefits Related to COVID-19 Medicaid and CHP Foundation Resources
Centers for Disease Control & Prevention: Communication Resources Patient Advocate Foundation: COVID-19 Operational Response Plan Nielsen Training & Consulting, LLC: COVID-19 Resources for Nonprofit Leaders Exercise
Orangetheory:  Orangetheory At Home Gold’s Gym: Stronger Anywhere Peloton: Free App Planet Fitness: Home Work-Ins Crunch: Crunch Live 305 Fitness: Group Classes Corepower Yoga: Keep Up Your Practice American Heart Association: Choose Your Own Workout Entertainment
Two Disabled Dudes: Podcast Global Genes: RARECast (Podcast) Rare in Common: Podcast Instagram Live: John Legend Instagram Live: Luke Combs Instagram Live: Coldplay, Chris Martin Instagram Live: Gentle Hours with John Mayer Global Genes: RARE Daily

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

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