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POTS Research

By edriscoll, in POTS,

The following are selected articles relating to POTS. These articles can be obtained at medical libraries or ordered online at Loansome Doc Ordering System.
Postural Orthostatic Tachycardia in a Patient with Type 2 Diabetes with Diabetic Neuropathy   Tomichi Y, Kawano H, Mukaino A, Chiba Ak Doi Y, Arakawa S, Ishimatsu T, Fukae S, Abiru N, Maemura K  2018 Oct  PubMed
Quantitative assessment of autonomic symptom burden in Postural tachycardia syndrome (POTS) Rea NA, Campbell CL, Cortez MM  2017 June   PubMed
Painful temporomandibular disorders are common in patients with POTS and impact significantly upon quality of life.    Durham J, McDonald C. Hutchinson L, Newton JL  2015 PubMed 
Neurocardiogenic syncope coexisting with postural orthostatic tachycardia syndrome in patients suffering from orthostatic intolerance: a combined form of autonomic dysfunction.  Kanjwal K, Sheikh M, Karabin B, Kanjwal Y, Grubb BP  2011 May  PubMed
Comorbidities in Pediatric Patients with Postural Orthostatic Tachycardia Syndrome. Ojha A, Chelimsky TC, Chelimsky G. J Pediatr. 2010 Aug 17. PubMed
New onset postural orthostatic tachycardia syndrome following ablation of AV node reentrant tachycardia. Kanjwal K, Karabin B, Sheikh M, Kanjwal Y, Grubb BP. J Interv Card Electrophysiol. 2010 Aug 14. PubMed
Flow-mediated vasodilation and endothelium function in children with postural orthostatic tachycardia syndrome. Liao Y, Chen S, Liu X, Zhang Q, Ai Y, Wang Y, Jin H, Tang C, Du J. Am J Cardiol. 2010 Aug 1;106(3):378-82. PubMed
Effect of pregnancy on postural tachycardia syndrome. Kimpinski K, Iodice V, Sandroni P, Low PA. Mayo Clin Proc. 2010 Jul;85(7):639-44. Epub 2010 Jun 1. PubMed
Orthostatic intolerance and the headache patient. Mack KJ, Johnson JN, Rowe PC. Semin Pediatr Neurol. 2010 Jun;17(2):109-16. PubMed
Use of Octreotide in the Treatment of Refractory Orthostatic Intolerance. Kanjwal K, Saeed B, Karabin B, Kanjwal Y, Grubb BP. Am J Ther. 2010 Jun 9. PubMed
Menstrual Cycle Affects Renal-Adrenal and Hemodynamic Responses During Prolonged Standing in the Postural Orthostatic Tachycardia Syndrome.  Fu Q, Vangundy TB, Shibata S, Auchus RJ, Williams GH, Levine BD.  Hypertension. 2010 May 17. PubMed
Use of Methylphenidate in the Treatment of Patients Suffering From Refractory Postural Tachycardia Syndrome.  Kanjwal K, Saeed B, Karabin B, Kanjwal Y, Grubb BP.  Am J Ther. 2010 May 10. PubMed
Acute fluid ingestion in the treatment of orthostatic intolerance - important implications for daily practice.  Z'graggen WJ, Hess CW, Humm AM.  Eur J Neurol. 2010 Apr 20. PubMed
Comparative clinical profile of postural orthostatic tachycardia patients with and without joint hypermobility syndrome.  Kanjwal K, Saeed B, Karabin B, Kanjwal Y, Grubb BP.  Indian Pacing Electrophysiol J. 2010 Apr 1;10(4):173-8. PubMed
Autonomic dysfunction presenting as postural orthostatic tachycardia syndrome in patients with multiple sclerosis.  Kanjwal K, Karabin B, Kanjwal Y, Grubb BP.  Int J Med Sci. 2010 Mar 11;7:62-7. PubMed
Orthostatic syndromes differ in syncope frequency.  Ojha A, McNeeley K, Heller E, Alshekhlee A, Chelimsky G, Chelimsky TC.  Am J Med. 2010 Mar;123(3):245-9. PubMed
Efficiency evaluation of autonomic heart control by using the principal component analysis of ECG P-wave.  Krisciukaitis A, Simoliuniene R, Tamosiunas M, Saferis V, Vainoras A, Gargasas L.  Methods Inf Med. 2010 Mar 16;49(2):161-7. Epub 2010 Feb 22. PubMed
Postural orthostatic tachycardia syndrome: a clinical review. Johnson JN, Mack KJ, Kuntz NL, Brands CK, Porter CJ, Fischer PR. Pediatr Neurol. 2010 Feb;42(2):77-85. PubMed
Perioperative care of an adolescent with postural orthostatic tachycardia syndrome. Kernan S, Tobias JD. Saudi J Anaesth. 2010 Jan;4(1):23-7. Full text
Distal sudomotor findings in postural tachycardia syndrome. Peltier AC, Garland E, Raj SR, Sato K, Black B, Song Y, Wang L, Biaggioni I, Diedrich A, Robertson D. Clin Auton Res. 2009 Dec 25. PubMed
Postural Orthostatic Tachycardia Syndrome: A Rare Complication Following Electrical Injury. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Pacing Clin Electrophysiol. 2009 Dec 10. PubMed
Postpartum postural orthostatic tachycardia syndrome in a patient with the joint hypermobility syndrome. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Cardiol Res Pract. 2009;2009:187543. Epub 2009 Oct 11. Full Text
Cardiac Neurotransmission Imaging with 123I-Meta-iodobenzylguanidine in Postural Tachycardia Syndrome.  Haensch CA, Lerch H, Schlemmer H, Jigalin A, Isenmann S. J Neurol Neurosurg Psychiatry. 2009 Aug 16. PubMed
Outcomes of pregnancy in patients with preexisting postural tachycardia syndrome. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Pacing Clin Electrophysiol. 2009 Aug;32(8):1000-3. PubMed
Propranolol Decreases Tachycardia and Improves Symptoms in the Postural Tachycardia Syndrome. Less Is More. Raj SR, Black BK, Biaggioni I, Paranjape SY, Ramirez M, Dupont WD, Robertson D. Circulation. 2009 Aug 17. PubMed
Decreased Upright Cerebral Blood Flow and Cerebral Autoregulation in Normocapnic Postural Tachycardia Syndrome. Ocon AJ, Medow MS, Taneja I, Clark D, Stewart JM. Am J Physiol Heart Circ Physiol. 2009 Jun 5. PubMed
Autonomic Testing in Functional Gastrointestinal Disorders: Implications of Reproducible Gastrointestinal Complaints during Tilt Table Testing. Safder S, Chelimsky TC, O'Riordan MA, Chelimsky G. Gastroenterol Res Pract. 2009;2009:868496. Epub 2009 May 5. Full Text
Defects in cutaneous angiotensin-converting enzyme 2 and angiotensin-(1-7) production in postural tachycardia syndrome. Stewart JM, Ocon AJ, Clarke D, Taneja I, Medow MS. Hypertension. 2009 May;53(5):767-74. Full Text
What is the optimal duration of tilt testing for the assessment of patients with suspected postural tachycardia syndrome? Carew S, Cooke J, O'Connor M, Donnelly T, Costelloe A, Sheehy C, Lyons D. Europace. 2009 May;11(5):635-7. Epub 2009 Mar 4. PubMed
Quantitative study on cerebral blood volume determined by a near-infrared spectroscopy during postural change in children. Kim YT, Tanaka H, Takaya R, Kajiura M, Tamai H, Arita M. Acta Paediatr. 2009 Mar;98(3):466-71. PubMed
Antibody titers predict clinical features of autoimmune autonomic ganglionopathy. Gibbons CH, Freeman R. Auton Neurosci. 2009 Mar 12;146(1-2):8-12. PubMed
Japanese clinical guidelines for juvenile orthostatic dysregulation version 1. Tanaka H, Fujita Y, Takenaka Y, Kajiwara S, Masutani S, Ishizaki Y, Matsushima R, Shiokawa H, Shiota M, Ishitani N, Kajiura M, Honda K; Task Force of Clinical Guidelines for Child Orthostatic Dysregulation, Japanese Society of Psychosomatic Pediatrics. Pediatr Int. 2009 Feb;51(1):169-79. PubMed
Outcomes in adolescents with postural orthostatic tachycardia syndrome treated with midodrine and beta-blockers. Lai CC, Fischer PR, Brands CK, Fisher JL, Porter CB, Driscoll SW, Graner KK. Pacing Clin Electrophysiol. 2009 Feb;32(2):234-8. PubMed.
Postural tachycardia syndrome (POTS). Low PA, Sandroni P, Joyner M, Shen WK J Cardiovasc Electrophysiol. 2009 Mar;20(3):352-8. Epub 2009 Jan 16. Review. PubMed
Treatment of inappropriate sinus tachycardia with ivabradine in a patient with postural orthostatic tachycardia syndrome and a dual chamber pacemaker. Khan S, Hamid S, Rinaldi C. Pacing Clin Electrophysiol. 2009 Jan;32(1):131-3. PubMed
Effect of selective alpha1 receptor agonist in the treatment of children with postural orthostatic tachycardia syndrome. Chen L, DU JB, Jin HF, Zhang QY, Li WZ, Wang L, Wang YL. Zhonghua Er Ke Za Zhi. 2008 Sep;46(9):688-91. Chinese. PubMed
Postural orthostatic tachycardia in a teenager with Klinefelter syndrome. Hainstock MR, Gruchala NE, Fike N, Samson RA, Klewer SE, Barber BJ. Congenit Heart Dis. 2008 Nov-Dec;3(6):440-2. PubMed
Autonomic dysfunction in fibromyalgia syndrome: postural orthostatic tachycardia. Staud R. Curr Rheumatol Rep. 2008 Dec;10(6):463-6. PubMed
Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome. Hoad A, Spickett G, Elliott J, Newton J. QJM. 2008 Dec;101(12):961-5. Epub 2008 Sep 19. PubMed
Postural orthostatic tachycardia in a teenager with Klinefelter syndrome. Hainstock MR, Gruchala NE, Fike N, Samson RA, Klewer SE, Barber BJ. Congenit Heart Dis. 2008 Nov;3(6):440-2. PubMed
Psychiatric Profile and Attention Deficits in Postural Tachycardia Syndrome. Raj V, Haman KL, Raj SR, Byrne D, Blakely RD, Biaggioni I, Robertson D, Shelton RC. J Neurol Neurosurg Psychiatry. 2008 Oct 31. PubMed
Reversible postural tachycardia syndrome due to inadvertent overuse of Red Bull((R)). Terlizzi R, Rocchi C, Serra M, Solieri L, Cortelli P. Clin Auton Res. 2008 Aug;18(4):221-3. Epub 2008 Aug 5. PubMed
Anesthesia for caesarean section in a patient with Ehlers-Danlos syndrome associated with postural orthostatic tachycardia syndrome. Jones TL, Ng C. Int J Obstet Anesth. 2008 Jul 8. PubMed
Cardiovascular autonomic reflexes on the postural orthostatic tachycardia syndrome. Benjelloun H, Benjelloun H, Aboudrar S, Coghlan L, Benomar M. Ann Cardiol Angeiol (Paris). 2008 Jun 10. PubMed
Postural tachycardia syndrome.Grubb BP. Circulation. 2008 May 27;117(21):2814-7. Full Text
Invited Article: Autonomic ganglia: target and novel therapeutic tool.Vernino S, Sandroni P, Singer W, Low PA. Neurology. 2008 May 13;70(20):1926-32. PubMed
Orthostatic intolerance and gastrointestinal motility in adolescents with nausea and abdominal pain. Antiel RM, Risma JM, Grothe RM, Brands CK, Fischer PR. J Pediatr Gastroenterol Nutr. 2008 Mar;46(3):285-8. PubMed
Postural tachycardia syndrome and coronary artery bridge. Abdelmoneim SS, Moustafa S, Mookadam F. Europace. 2008 Apr;10(4):482-5. Epub 2008 Mar 13. PubMed
A Matched Case Control Study of Orthostatic Intolerance in Children/Adolescents With Chronic Fatigue Syndrome. Galland BC, Jackson PM, Sayers RM, Taylor BJ. Pediatr Res. 2008 Feb;63(2):196-202. PubMed
Angiotensin II type 1 receptor blockade corrects cutaneous nitric oxide deficit in postural tachycardia syndrome. Stewart JM, Taneja I, Glover J, Medow MS. Am J Physiol Heart Circ Physiol. 2008 Jan;294(1):H466-73. PubMed
A multicenter study on treatment of autonomous nerve-mediated syncope in children with beta-receptor blocker. Chen L, DU JB, Zhang QY, Wang C, DU ZD, Wang HW, Tian H, Chen JJ, Wang YL, Hu XF, Li WZ, Han L. Zhonghua Er Ke Za Zhi. 2007 Dec;45(12):885-8. PubMed
Takotsubo cardiomyopathy in a patient with postural tachycardia syndrome.  Khurana RK. Clin Auton Res. 2007 Oct 19. PubMed
Postural tachycardia syndrome with asystole on head-up tilt. Alshekhlee A, Guerch M, Ridha F, McNeeley K, Chelimsky TC. Clin Auton Res. 2007 Oct 19 PubMed
Symptom improvement in postural orthostatic tachycardia syndrome with the sinus node blocker ivabradine. Ewan V, Norton M, Newton JL. Europace. 2007 Dec;9(12):1202. Epub 2007 Oct 19. PubMed
Sympathovagal balance analysis in idiopathic postural orthostatic tachycardia syndrome. Russo V, De Crescenzo I, Ammendola E, Santangelo L, Calabrò R. Acta Biomed. 2007 Aug;78(2):133-8. PubMed
Cardiac denervation in postural tachycardia syndrome.Haensch CA, Lerch H, Jigalin A, Schlemmer H, Isenmann S. Clin Auton Res. 2007 Sep 26. PubMed
Postural syncope: mechanisms and management.Vaddadi G, Lambert E, Corcoran SJ, Esler MD. Med J Aust. 2007 Sep 3;187(5):299-304. PubMed
Treatment of autonomic neuropathy, postural tachycardia and orthostatic syncope with octreotide LAR. Hoeldtke RD, Bryner KD, Hoeldtke ME, Hobbs G. Clin Auton Res. 2007 Aug 31. PubMed
Blood volume perturbations in the postural tachycardia syndrome. Raj SR, Robertson D. Am J Med Sci. 2007 Jul;334(1):57-60. PubMed
Reduced stroke volume during exercise in postural tachycardia syndrome. Masuki S, Eisenach JH, Schrage WG, Johnson CP, Dietz NM, Wilkins BW, Sandroni P, Low PA, Joyner MJ. J Appl Physiol. 2007 Jul 12; PubMed
Postural orthostatic tachycardia syndrome. Agarwal AK, Garg R, Ritch A, Sarkar P. Postgrad Med J. 2007 Jul;83(981):478-80. PubMed
Reduced Central Blood Volume and Cardiac Output, and Increased Vascular Resistance during Static Handgrip Exercise in Postural Tachycardia Syndrome. Stewart J, Taneja I, Medow MS. Am J Physiol Heart Circ Physiol. 2007 Jul 6; PubMed
Postural orthostatic tachycardia syndrome: an underrecognized disorder.PandianJD, Dalton K, Henderson RD, McCombe PA. Intern Med J. 2007 Jul 19;37(8):529-535. PubMed
Sympathetic neural activity, sex dimorphism, and postural tachycardia syndrome. Bonyhay I, Freeman R. Ann  Neurol. 2007 Mar 14. PubMed
Postural orthostatic tachycardia syndrome: the Mayo clinic experience. Thieben MJ, Sandroni P, Sletten DM, Benrud-Larson LM, Fealey RD, Vernino S, Lennon VA, Shen WK, Low PA. Mayo Clin Proc. 2007 Mar;82(3):308-13. Full Text

The postural tachycardia syndrome. Medow MS, Stewart JM. Cardiol Rev. 2007 Mar-Apr;15(2):67-75. PubMed
Pyridostigmine in the treatment of orthostatic intolerance. Gales BJ, Gales MA. Ann Pharmacother. 2007 Feb;41(2):314-8. Epub 2007 Feb 6. PubMed
Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient.McEvoy MD, Low PA, Hebbar L. Anesth Analg. 2007 Jan;104(1):166-7. PubMed
Episodic hypertension in postural orthostatic tachycardia syndrome. Carvajal Roca E, Torro Domenech I. Lurbe Ferrer E. An Pediatr (Barc). 2006 Nov;65(5):496-9. PubMed   
Excessive Heart Rate Response to Orthostatic Stress in Postural Tachycardia Syndrome is Not Caused by Anxiety. Masuki S, Eisenach JH, Johnson C, Dietz NM, Benrud-Larson L, Schrage WG, Curry TB, Sandroni P, Low PA, Joyner MJ. J Appl Physiol. 2006 Nov 16. PubMed
Treatment of postural tachycardia syndrome: a comparison of octreotide and midodrine. Hoeldtke RD, Bryner KD, Hoeldtke ME, Hobbs G. Clin Auton Res. 2006 Oct 11 PubMed
Pharmacokinetics of Pyridostigmine in a Child With Postural Tachycardia Syndrome. Filler G, Gow RM, Nadarajah R, Jacob P, Johnson G, Zhang YL, Christians U. Pediatrics. 2006 Oct 2; PubMed
The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. Raj SR. Indian Pacing Electrophysiol J. 2006 Apr 1;6(2):84-99. PubMed
Experimental induction of panic-like symptoms in patients with postural tachycardia syndrome. Khurana RK. Clin Auton Res. 2006 Aug 16; PubMed
Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report. Corbett WL, Reiter CM, Schultz JR, Kanter RJ, Habib AS. Br J Anaesth. 2006 May 12; PubMed
Postural orthostatic tachycardia syndrome: Dental treatment considerations. Brooks JK, Francis LA. J Am Dent Assoc. 2006 Apr;137(4):488-93. PubMed
Familial orthostatic tachycardia. Keller NR, Robertson D. Curr Opin Cardiol. 2006 May;21(3):173-9. PubMed

Postural Hypocapnic Hyperventilation is Associated with Enhanced Peripheral Vasoconstriction in Postural Tachycardia Syndrome with Normal Supine Blood Flow. Stewart JM, Medow MS, Cherniack NS, Natelson BH. Am J Physiol Heart Circ Physiol. 2006 Mar 24. PubMed

Beta2-adrenoceptor genotype and function affect hemodynamic profile heterogeneity in postural tachycardia syndrome. Jacob G, Garland EM, Costa F, Stein CM, Xie HG, Robertson RM, Biaggioni I, Robertson D. Hypertension. 2006 Mar;47(3):421-7. Epub 2006 Feb 6. PubMed

The postural tachycardia syndrome: a concise guide to diagnosis and management. Grubb BP, Kanjwal Y, Kosinski DJ. J Cardiovasc Electrophysiol. 2006 Jan;17(1):108-12. No abstract available.
Characterizing Gulf War Illnesses: neurally mediated hypotension and postural tachycardia syndrome. Lucas KE, Armenian HK, Debusk K, Calkins HG, Rowe PC. Am J Med. 2005 Dec;118(12):1421-7. PubMed
Orthostatic instability in a population-based study of chronic fatigue syndrome. Jones JF, Nicholson A, Nisenbaum R, Papanicolaou DA, Solomon L, Boneva R, Heim C, Reeves WC. Am J Med. 2005 Dec;118(12):1415. PubMed

Increased plasma angiotensin II in postural tachycardia syndrome is related to reduced blood flow and blood volume. Stewart JM, Glover JL, Medow MS. Clin Sci (Lond).2005 Nov 1; PubMed
Decreased Microvascular Nitric Oxide-Dependent Vasodilation in Postural Tachycardia Syndrome. Medow MS, Minson CT, Stewart JM. Circulation. 2005 Oct 17; PubMed

Inappropriate sinus tachycardia, postural orthostatic tachycardia syndrome, and overlapping syndromes. Brady PA, Low PA, Shen WK.
Pacing Clin Electrophysiol. 2005 Oct;28(10):1112-21. PubMed

Endothelial NO Synthase Polymorphisms and Postural Tachycardia Syndrome. Garland EM, Winker R, Williams SM, Jiang L, Stanton K, Byrne DW, Biaggioni I, Cascorbi I, Phillips Iii JA, Harris PA, Rudiger H, Robertson D. Hypertension. 2005 Oct 3. Full Text
Continuous progression of orthostatic tachycardia as a further feature of the postural tachycardia syndrome. Diehl RR. Pacing Clin Electrophysiol. 2005 Sep;28(9):975-9. PubMed

Persistent Splanchnic Hyperemia during Upright tilt in Postural Tachycardia Syndrome. Stewart JM, Medow MS, Glover JL, Montgomery LD. Am J Physiol Heart Circ Physiol. 2005 Sep 2; PubMed
Cerebral blood flow during supine rest and the first minute of head-up tilt in patients with orthostatic intolerance. Jauregui-Renaud K, Hermosillo JA, Jardon JL, Marquez MF, Kostine A, Silva MA, Cardenas M. Europace. 2005 Sep;7(5):460-4. PubMed

Orthostatic intolerance and syncope associated with Chiari type I malformation. Prilipko O, Dehdashti AR, Zaim S, Seeck M.
 J Neurol Neurosurg Psychiatry. 2005 Jul;76(7):1034-6. PubMed

Splanchnic Hyperemia and Hypervolemia during the Valsalva Maneuver in Postural Tachycardia Syndrome. Stewart JM, Medow MS, Montgomery LD, Glover JL, Millonas MM. Am J Physiol Heart Circ Physiol. 2005 Jun 17. PubMed
Pregnancy in postural orthostatic tachycardia syndrome. Glatter KA, Tuteja D, Chiamvimonvat N, Hamdan M, Park JK. Pacing Clin Electrophysiol. 2005 Jun;28(6):591-3. PubMed
The value of autonomic testing in postural tachycardia syndrome. A screen of candidate genes and influence of beta(2)-adrenergic receptor genotypes in postural tachycardia syndrome. Auton Neurosci. 2005 Jun 15;120(1-2):97-103. PubMed
A screen of candidate genes and influence of beta(2)-adrenergic receptor genotypes in postural tachycardia syndrome. Nickander KK, Carlson PJ, Urrutia RA, Camilleri M, Low PA. Auton Neurosci. 2005 Jun 15;120(1-2):97-103. PubMed
Acetylcholinesterase inhibition improves tachycardia in postural tachycardia syndrome. Raj SR, Black BK, Biaggioni I, Harris PA, Robertson D. Circulation. 2005 May 31;111(21):2734-40. PubMed
Cerebral Autoregulation Is Preserved In Postural Tachycardia Syndrome (POTS). Schondorf R, Benoit J, Stein R. J Appl Physiol. 2005 Apr 28; PubMed
Baroreflex control of muscle sympathetic nerve activity in the postural orthostatic tachycardia syndrome. Muenter Swift N, Charkoudian N, Dotson RM, Suarez GA, Low PA. Am J Physiol Heart Circ Physiol. 2005 Apr 29. PubMed
Gastrointestinal symptoms associated with orthostatic intolerance. Sullivan SD, Hanauer J, Rowe PC, Barron DF, Darbari A, Oliva-Hemker M. J Pediatr Gastroenterol Nutr. 2005 Apr;40(4):425-8. PubMed
Renin-aldosterone paradox and perturbed blood volume regulation underlying postural tachycardia syndrome. Raj SR, Biaggioni I, Yamhure PC, Black BK, Paranjape SY, Byrne DW, Robertson D. Circulation. 2005 Apr 5;111(13):1574-82. PubMed
Postural tachycardia syndrome. Makai A, Tahin T, Simor T, Csanadi Z, Rudas L. Orv Hetil. 2005 Mar 13;146(11):515-20. Review. Hungarian. PubMed
Clinical analysis and follow-up study of postural orthostatic tachycardia syndrome in 28 pediatric cases. Zhang QY, Du JB, Li WZ. Zhonghua Er Ke Za Zhi. 2005 Mar;43(3):165-9. Chinese. PubMed
Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders. Shibao C, Arzubiaga C, Roberts Ii LJ, Raj S, Black B, Harris P, Biaggioni I. Hypertension. 2005 Feb 14. PubMed 
Chronic orthostatic intolerance and the postural tachycardia syndrome (POTS). Stewart JM. J Pediatr. 2004 Dec;145(6):725-30.  No Abstract Available.
Neurocirculatory Abnormalities in Chronic Orthostatic Intolerance.
Goldstein DS, Eldadah B, Holmes C, Pechnik S, Moak J, Sharabi Y.
Circulation. 2005 Feb 7. PubMed
Sympathetic nerve activity in response to hypotensive stress in the postural tachycardia syndrome. Bonyhay I, Freeman R. Circulation. 2004 Nov 16;110(20):3193-8. PubMed
Syncope due to autonomic insufficiency syndromes associated with orthostatic intolerance.Grubb B, Dan GA. Rom J Intern Med. 2000-2001;38-39:3-19. PubMed

Postural Orthostatic Tachycardia Warrants Investigation of Chiari I Malformation as a Possible Cause. Pasupuleti DV, Vedre A. Cardiology. 2004 Nov 3;103(1):55-56. PubMed
[Orthostatic intolerance--prevalence, diagnostic management and its significance for occupational medicine] Winker R. Wien Klin Wochenschr. 2004;116 Suppl 1:40-6.  German. PubMed
Lower limb compression bandaging is effective in preventing signs and symptoms of seating-induced postural hypotension. Gorelik O, Fishlev G, Almoznino-Sarafian D, Alon I, Weissgarten J, Shteinshnaider M, Chachashvily S, Modai D, Cohen N. Cardiology. 2004;102(4):177-83.
Water drinking in the management of orthostatic intolerance due to orthostatic hypotension, vasovagal syncope and the postural tachycardia syndrome. Mathias CJ, Young TM. Eur J Neurol. 2004 Sep;11(9):613-9. PubMed
[Autonomic profile and cardiovascular symptoms]
El Honsali I, Benjelloun H, Coghlan CL, Benomar M. Ann Cardiol Angeiol (Paris). 2004 Jun;53(3):137-43.  French. PubMed
Regional Blood Volume and Peripheral Blood Flow in the Postural Tachycardia Syndrome. Stewart JM, Montgomery LD. Am J Physiol Heart Circ Physiol. 2004 Apr 29. PubMed
Asymptomatic Brugada Syndrome Associated with Postural Orthostatic Tachycardia Syndrome: Morishima I, Sone T, Tsuboi H, Mukawa H, Satoda M, Uesugi M. Pacing Clin Electrophysiol. 2004 Apr;27(4):537-540. PubMed
Neurally mediated hypotension in systemic lupus erythematosus patients with fibromyalgia. Tang S, Calkins H, Petri M. Rheumatology (Oxford). 2004 Feb 24. PubMed
Prospective evaluation of somatic and autonomic small fibers in selected autonomic neuropathies. Singer W, Spies JM, McArthur J, Low J, Griffin JW, Nickander KK, Gordon V, Low PA. Neurology. 2004 Feb 24;62(4):612-8. PubMed
Case reports and review of Postural Orthostatic Tachycardia syndrome (POTS). Carothers B, Schmidt L, Puri V. J Ky Med Assoc. 2003 Dec;101(12):549-52. Review. PubMed
Correlates of functional disability in patients with postural tachycardia syndrome: preliminary cross-sectional findings. Benrud-Larson LM, Sandroni P, Haythornthwaite JA, Rummans TA, Low PA. Health Psychol. 2003 Nov;22(6):643-8. PubMed
Decreased Skeletal Muscle Pump Activity in Postural Tachycardia Syndrome Patients with Low Peripheral Blood Flow. Stewart JM, Medow MS, Montgomery LD, McLeod KD. Am J Physiol Heart Circ Physiol. 2003 Oct 23. PubMed
Orthostatic headaches without CSF leak in postural tachycardia syndrome. Mokri B, Low PA. Neurology. 2003 Oct 14;61(7):980-2. PubMed

Treatment of postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia. Kanjwal MY, Kosinski DJ, Grubb BP.
Curr Cardiol Rep. 2003 Sep;5(5):402-6. PubMed 
Local Vascular Responses Affecting Blood Flow in Postural Tachycardia Syndrome. Stewart JM, Medow MA, Montgomery LD.
Am J Physiol Heart Circ Physiol. 2003 Aug 14. PubMed 
Dysautonomia in the joint hypermobility syndrome. Gazit Y, Nahir AM, Grahame R, Jacob G. Am J Med. 2003 Jul;115(1):33-40. PubMed 
Microvascular filtration is increased in postural tachycardia syndrome. Stewart JM. Circulation. 2003 May 19. PMID: 12756156 PubMed
Diagnostic management of orthostatic intolerance in the workplace. Winker R, Barth A, Dorner W, Mayr O, Pilger A, Ivancsits S, Ponocny I, Heider A, Wolf C, Rudiger HW. Int Arch Occup Environ Health. 2003 Mar;76(2):143-50. PMID: 12733087 PubMed
Contrasting neurovascular findings in chronic orthostatic intolerance and neurocardiogenic syncope.Stewart JM, Weldon A.
Clin Sci (Lond). 2003 Apr;104(4):329-40. PMID: 12653674 PubMed

Heart rate-dependent electrocardiogram abnormalities in patients with postural tachycardia syndrome. Singer W, Shen WK, Opfer-Gehrking TL, McPhee BR, Hilz MJ, Low PA. Auton Neurosci. 2003 Jan 31;103(1-2):106-13. PMID: 12531404 [PubMed - in process]

Clinical and physiological effects of an acute alpha-1 adrenergic agonist and a beta-1 adrenergic antagonist in chronic orthostatic intolerance. Stewart JM, Munoz J, Weldon A. Circulation. 2002 Dec 3;106(23):2946-54. PMID: 12460877 [PubMed - in process]

Comparative study of cerebral blood flow between postural tachycardia and neurocardiogenic syncope, during head-up tilt test. Hermosillo AG, Jauregui-Renaud K, Kostine A, Marquez MF, Lara JL, Cardenas M.Europace. 2002 Oct;4(4):369-74. PMID: 12408256 [PubMed - in process]

Dysautonomias: clinical disorders of the autonomic nervous system.
Goldstein DS, Robertson D, Esler M, Straus SE, Eisenhofer G. Ann Intern Med. 2002 Nov 5;137(9):753-63.  PMID: 12416949 [PubMed - in process]

Cardiac sympathetic dysautonomia in chronic orthostatic intolerance syndromes. Goldstein DS, Holmes C, Frank SM, Dendi R, Cannon RO 3rd, Sharabi Y, Esler MD, Eisenhofer G. Circulation. 2002 Oct 29;106(18):2358-65. PMID: 12403667 [PubMed - in process]

Temporal lobe epilepsy and postural orthostatic tachycardia syndrome (POTS). Seeck M, Blanke O, Zaim S. Epilepsy Behav. 2002 Jun;3(3):285-288. PMID: 12662611Medline
Quality of life in patients with postural tachycardia syndrome.
Benrud-Larson LM, Dewar MS, Sandroni P, Rummans TA, Haythornthwaite JA, Low PA. Mayo Clin Proc. 2002 Jun;77(6):531-537.  PMID: 12059122 [PubMed - indexed for MEDLINE] From PubMed
The broader view: catecholamine abnormalities. Vincent S, Robertson D. Clin Auton Res. 2002 May;12 Suppl 1:I44-I49.  PMID: 12102462 [PubMed - in process] From PubMed
Pooling in chronic orthostatic intolerance: arterial vasoconstrictive but not venous compliance defects. Stewart JM. Circulation. 2002 May 14;105(19):2274-2281. PMID: 12010910 [PubMed - indexed for MEDLINE] From PubMed
Polymorphisms of genes encoding components of the sympathetic nervous system but not the renin-angiotensin system as risk factors for orthostatic hypotension. Tabara Y, Kohara K, Miki T. J Hypertens. 2002 Apr;20(4):651-656. 
PMID: 11910300 [PubMed - in process] From PubMed
Water drinking as a treatment for orthostatic syndromes.
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Evidence of an intrinsic sinus node abnormality in patients with postural tachycardia syndrome. Singer W, Shen WK, Opfer-Gehrking TL, McPhee BR, Hilz MJ, Low PA. Mayo Clin Proc. 2002 Mar;77(3):246-52.  PMID: 11888028 [PubMed - indexed for MEDLINE] From PubMed
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Inappropriate early hypotension in adolescents: a form of chronic orthostatic intolerance with defective dependent vasoconstriction. Stewart JM,  Weldon A. Pediatr Res. 2001 Jul;50(1):97-103.  PMID: 11420425 [PubMed - in process] From PubMed
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Familial orthostatic tachycardia due to norepinephrine transporter deficiency. Robertson D,  Flattem N,  Tellioglu T,  Carson R,  Garland E,  Shannon JR,  Jordan J,  Jacob G,  Blakely RD,  Biaggioni I. Ann N Y Acad Sci. 2001 Jun;940:527-43.  PMID: 11458707 [PubMed - indexed for MEDLINE] From PubMed
Reflex vascular defects in the orthostatic tachycardia syndrome of adolescents. Stewart JM,  Weldon A. J Appl Physiol. 2001 Jun;90(6):2025-32.  PMID: 11356761 [PubMed - indexed for MEDLINE] From PubMed
Orthostatic intolerance in Behcet's disease. Tellioglu T,  Robertson D. Auton Neurosci. 2001 Jun 20;89(1-2):96-9.  PMID: 11474652 [PubMed - in process] From PubMed
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Deterioration of left ventricular chamber performance after bed rest : "cardiovascular deconditioning" or hypovolemia? Perhonen MA,  Zuckerman JH,  Levine BD. Circulation. 2001 Apr 10;103(14):1851-7.  PMID: 11294802 [PubMed - indexed for MEDLINE] From PubMed
Cerebrovascular and cardiovascular responses associated with orthostatic intolerance and tachycardia. Harms MP,  van Lieshout JJ. Clin Auton Res. 2001 Feb;11(1):35-8.  PMID: 11503949 [PubMed - in process] From PubMed
The fainting patient: value of the head-upright tilt-table test in adult patients with orthostatic intolerance. Lamarre-Cliche M,  Cusson J. CMAJ. 2001 Feb 6;164(3):372-6.  PMID: 11232140 [PubMed - indexed for MEDLINE] From PubMed 
Is sinus node modification appropriate for inappropriate sinus tachycardia with features of postural orthostatic tachycardia syndrome? Shen WK,  Low PA,  Jahangir A,  Munger TM,  Friedman PA,  Osborn MJ,  Stanton MS,  Packer DL,  Rea RF,  Hammill SC. Pacing Clin Electrophysiol. 2001 Feb;24(2):217-30.  PMID: 11270703 [PubMed - indexed for MEDLINE] From PubMed
Splanchnic-mesenteric capacitance bed in the postural tachycardia syndrome (POTS). Tani H,  Singer W,  McPhee BR,  Opfer-Gehrking TL,  Haruma K,  Kajiyama G,  Low PA. Auton Neurosci. 2000 Dec 28;86(1-2):107-13.  PMID: 11269915 [PubMed - indexed for MEDLINE] From PubMed
Abnormal baroreflex responses in patients with idiopathic orthostatic intolerance. Farquhar WB,  Taylor JA,  Darling SE,  Chase KP,  Freeman R. Circulation. 2000 Dec 19;102(25):3086-91.  PMID: 11120699 [PubMed - indexed for MEDLINE] From PubMed
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Orthostatic intolerance and the postural tachycardia syndrome: genetic and environment pathophysiologies. Neurolab Autonomic Team. Robertson D,  Shannon JR,  Biaggioni I,  Ertl AC,  Diedrich A,  Carson R,  Furlan R,  Jacob G,  Jordan J. Pflugers Arch. 2000;441(2-3 Suppl):R48-51.  PMID: 11200979 [PubMed - indexed for MEDLINE] From PubMed
Clinical improvement in patients with orthostatic intolerance after treatment with bisoprolol and fludrocortisone. Freitas J,  Santos R,  Azevedo E,  Costa O,  Carvalho M,  de Freitas AF. Clin Auton Res. 2000 Oct;10(5):293-9.  PMID: 11198485 [PubMed - indexed for MEDLINE] From PubMed
Vascular responses to orthostatic stress in patients with postural tachycardia syndrome (POTS), in patients with low orthostatic tolerance, and in asymptomatic controls. Bush VE,  Wight VL,  Brown CM,  Hainsworth R. Clin Auton Res. 2000 Oct;10(5):279-84.  PMID: 11198483 [PubMed - indexed for MEDLINE] From PubMed
The neuropathic postural tachycardia syndrome. Jacob G,  Costa F,  Shannon JR,  Robertson RM,  Wathen M,  Stein M,  Biaggioni I,  Ertl A,  Black B,  Robertson D. N Engl J Med. 2000 Oct 5;343(14):1008-14.  PMID: 11018167 [PubMed - indexed for MEDLINE] From PubMed
Vascular perturbations in the chronic orthostatic intolerance of the postural orthostatic tachycardia syndrome. Stewart JM,  Weldon A. J Appl Physiol. 2000 Oct;89(4):1505-12.  PMID: 11007589 [PubMed - indexed for MEDLINE] From PubMed
[Idiopathic postural orthostatic tachycardia syndrome].
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PMID: 11019390 [PubMed - as supplied by publisher]
Cerebral vasoconstriction precedes orthostatic intolerance after parabolic flight. Serrador JM,  Shoemaker JK,  Brown TE,  Kassam MS,  Bondar RL,  Schlegel TT. Brain Res Bull. 2000 Sep 1;53(1):113-20.  PMID: 11033215 [PubMed - indexed for MEDLINE] From PubMed
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Autonomic nervous system dysfunction in adolescents with postural orthostatic tachycardia syndrome and chronic fatigue syndrome is characterized by attenuated vagal baroreflex and potentiated sympathetic vasomotion. Stewart JM. Pediatr Res. 2000 Aug;48(2):218-26.  PMID: 10926298 [PubMed - indexed for MEDLINE] From PubMed
Perioperative considerations in a patient with orthostatic intolerance syndrome. McHaourab A,  Mazzeo AJ,  May JA,  Pagel PS. Anesthesiology. 2000 Aug;93(2):571-3. No Abstract Available. PMID: 10910484 [PubMed - indexed for MEDLINE] From PubMed
Orthostatic intolerance: a disorder of young women. Ali YS,  Daamen N,  Jacob G,  Jordan J,  Shannon JR,  Biaggioni I,  Robertson D. Obstet Gynecol Surv. 2000 Apr;55(4):251-9.  PMID: 10758621 [PubMed - indexed for MEDLINE] From PubMed
The postural orthostatic tachycardia syndrome: a potentially treatable cause of chronic fatigue, exercise intolerance, and cognitive impairment in adolescents. Karas B,  Grubb BP,  Boehm K,  Kip K. Pacing Clin Electrophysiol. 2000 Mar;23(3):344-51.  PMID: 10750135 [PubMed - indexed for MEDLINE] From PubMed
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Mechanisms of blood pressure alterations in response to the Valsalva maneuver in postural tachycardia syndrome. Sandroni P,  Novak V,  Opfer-Gehrking TL,  Huck CA,  Low PA. Clin Auton Res. 2000 Feb;10(1):1-5.  PMID: 10750636 [PubMed - indexed for MEDLINE] From PubMed
Orthostatic intolerance and tachycardia associated with norepinephrine-transporter deficiency. Shannon JR,  Flattem NL,  Jordan J,  Jacob G,  Black BK,  Biaggioni I,  Blakely RD,  Robertson D. N Engl J Med. 2000 Feb 24;342(8):541-9.  PMID: 10684912 [PubMed - indexed for MEDLINE] From PubMed
Blood volume: importance and adaptations to exercise training, environmental stresses, and trauma/sickness. Sawka MN,  Convertino VA,  Eichner ER,  Schnieder SM,  Young AJ. Med Sci Sports Exerc. 2000 Feb;32(2):332-48.  PMID: 10694114 [PubMed - indexed for MEDLINE] From PubMed
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[Differential orthostatic dysregulation disorders diagnosis]. Diehl RR,  Linden D. Nervenarzt. 1999 Dec;70(12):1044-51. German.  PMID: 10637809 [PubMed - indexed for MEDLINE] From PubMed
Postural tachycardia syndrome: clinical features and follow-up study. Sandroni P,  Opfer-Gehrking TL,  McPhee BR,  Low PA. Mayo Clin Proc. 1999 Nov;74(11):1106-10.  PMID: 10560597 [PubMed - indexed for MEDLINE] From PubMed
Interaction of genetic predisposition and environmental factors in the pathogenesis of idiopathic orthostatic intolerance. Jordan J,  Shannon JR,  Jacob G,  Pohar B,  Robertson D. Am J Med Sci. 1999 Nov;318(5):298-303.  PMID: 10555091 [PubMed - indexed for MEDLINE] From PubMed
Putting it together: a new treatment algorithm for vasovagal syncope and related disorders. Bloomfield DM,  Sheldon R,  Grubb BP,  Calkins H,  Sutton R. Am J Cardiol. 1999 Oct 21;84(8A):33Q-39Q.  PMID: 10568559 [PubMed - indexed for MEDLINE] From PubMed
Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome. Rowe PC,  Barron DF,  Calkins H,  Maumenee IH,  Tong PY,  Geraghty MT. J Pediatr. 1999 Oct;135(4):494-9.  PMID: 10518084 [PubMed - indexed for MEDLINE] From PubMed
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Analysis of heart rate variability during head-up tilt testing in a patient with idiopathic postural orthostatic tachycardia syndrome (POTS). Sumiyoshi M,  Nakata Y,  Mineda Y,  Yasuda M,  Nakazato Y,  Yamaguchi H. Jpn Circ J. 1999 Jun;63(6):496-8.  PMID: 10406593 [PubMed - indexed for MEDLINE] From PubMed
Cerebrovascular mechanisms in neurocardiogenic syncope with and without postural tachycardia syndrome. Diehl RR,  Linden D,  Chalkiadaki A,  Diehl A. J Auton Nerv Syst. 1999 May 28;76(2-3):159-66.  PMID: 10412840 [PubMed - indexed for MEDLINE] From PubMed
Diagnosis of tachycardia syndromes associated with orthostatic symptoms. Braune S,  Wrocklage C,  Schulte-Monting J,  Schnitzer R,  Lucking CH. Clin Auton Res. 1999 Apr;9(2):97-101.  PMID: 10225614 [PubMed - indexed for MEDLINE] From PubMed
Cerebrovascular regulation in the postural orthostatic tachycardia syndrome (POTS). Low PA,  Novak V,  Spies JM,  Novak P,  Petty GW. Am J Med Sci. 1999 Feb;317(2):124-33.  PMID: 10037116 [PubMed - indexed for MEDLINE] From PubMed
Clinical and laboratory indices that enhance the diagnosis of postural tachycardia syndrome. Novak V,  Novak P,  Opfer-Gehrking TL,  O'Brien PC,  Low PA. Mayo Clin Proc. 1998 Dec;73(12):1141-50.  PMID: 9868411 [PubMed - indexed for MEDLINE] From PubMed
Autonomic neuropathies. Low PA. Curr Opin Neurol. 1998 Oct;11(5):531-7.  PMID: 9848003 [PubMed - indexed for MEDLINE] From PubMed
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The postural orthostatic tachycardia syndrome: a neurocardiogenic variant identified during head-up tilt table testing. Grubb BP,  Kosinski DJ,  Boehm K,  Kip K. Pacing Clin Electrophysiol. 1997 Sep;20(9 Pt 1):2205-12.  PMID: 9309745 [PubMed - indexed for MEDLINE] From PubMed
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Comparison of the postural tachycardia syndrome (POTS) with orthostatic hypotension due to autonomic failure. Low PA,  Opfer-Gehrking TL,  Textor SC,  Schondorf R,  Suarez GA,  Fealey RD,  Camilleri M. J Auton Nerv Syst. 1994 Dec 15;50(2):181-8.  PMID: 7884158 [PubMed - indexed for MEDLINE] From PubMed
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Autoimmune Basis for Postural Tachycardia Syndrome
Hongliang Li, MD, PhD; Xichun Yu, MD; Campbell Liles, BS; Muneer Khan, MD; Megan Vanderlinde‐Wood, MD; Allison Galloway, MD; Caitlin Zillner, BS; Alexandria Benbrook, BS; Sean Reim, BS; Daniel Collier, BS; Michael A. Hill, PhD; Satish R. Raj, MD; Luis E. Okamoto, MD; Madeleine W. Cunningham, PhD; Christopher E. Aston, PhD; David C. Kem, MD
Background Patients with postural tachycardia syndrome (POTS) have exaggerated orthostatic tachycardia often following a viral illness, suggesting autoimmunity may play a pathophysiological role in POTS. We tested the hypothesis that they harbor functional autoantibodies to adrenergic receptors (AR).
Methods and Results Fourteen POTS patients (7 each from 2 institutions) and 10 healthy subjects were examined for α1AR autoantibody‐mediated contractility using a perfused rat cremaster arteriole assay. A receptor‐transfected cell‐based assay was used to detect the presence of β1AR and β2AR autoantibodies. Data were normalized and expressed as a percentage of baseline. The sera of all 14 POTS patients demonstrated significant arteriolar contractile activity (69±3% compared to 91±1% of baseline for healthy controls, P<0.001) when coexisting β2AR dilative activity was blocked; and this was suppressed by α1AR blockade with prazosin. POTS sera acted as a partial α1AR antagonist significantly shifting phenylephrine contractility curves to the right. All POTS sera increased β1AR activation (130±3% of baseline, P<0.01) and a subset had increased β2AR activity versus healthy subjects. POTS sera shifted isoproterenol cAMP response curves to the left, consistent with enhanced β1AR and β2AR agonist activity. Autoantibody‐positive POTS sera demonstrated specific binding to β1AR, β2AR, and α1AR in transfected cells.
Conclusions POTS patients have elevated α1AR autoantibodies exerting a partial peripheral antagonist effect resulting in a compensatory sympathoneural activation of α1AR for vasoconstriction and concurrent βAR‐mediated tachycardia. Coexisting β1AR and β2AR agonistic autoantibodies facilitate this tachycardia. These findings may explain the increased standing plasma norepinephrine and excessive tachycardia observed in many POTS patients.
Read the full research article here. 

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

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

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

We welcome your letters to DINET's Medical Advisors.  Please be aware that the information provided is not meant to be a diagnosis or medical advice.  It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org 
Q:   Is there any connection between autonomic dysfunction occurring after the gallbladder is removed.  I’ve noticed at several of my support groups that there are a number of young people who have had this procedure performed and then developed dysautonomia following it.   
Submitted by Michael W, Facebook Follower
A:   I agree! that is a very astute observation!
I have also seen it.  I don’t have a good explanation but I think the delayed gallbladder emptying on Hida scan is probably related with joint hypermobility spectrum (similar to delayed gastric emptying) I am not convinced that biliary dyskinesia commonly reported essentially means a pathology.  These are my personal observations for the last several years. Only 3 days ago I asked my students to take it up as a research project. Hope to get it published eventually. My answer may not be supported by peer-reviewed research.
Amer Suleman, MD, FSCAI, FHRS
The Heartbeat Clinic
Adjunct Professor, UT Dallas
Q:  I have been diagnosed with POTS and autonomic dysfunction and recently IBS.  My question is since gastric issues are common for people with dysautonomia, are disorders like IBS, colitis, etc just symptoms of dysautonomia or are they separate illnesses that develop because of dysautonomia?  Thank you for your concern. 
Submitted by Cathy, DINET member
A:   The short answer is that it is not known and likely variable in different patients. Patients can absolutely have colitis of various causes that have nothing to do with autonomic dysfunction. For example, there is no reason why someone with POTS cannot also be unlucky enough to have ulcerative colitis. I do suspect, however, that in some patients that have gastric emptying problems, that there may be a link. At this point in time, the treatments are largely symptomatic. Hopefully, that will change over time as our understanding of the mechanisms of illness improves.
Dr. Satish R. Raj    MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University
Q:    When I was first diagnosed with POTS, I had syncope or presyncope episodes 5 or more times per day.  After working with a cardiac rehab program prescribed by my doctor, I have been able to reduce my episodes to 2 - 3 per week. They taught me all about hydration, breathing from the diaphragm and learning the warning signs and not to panic when I feel an episode coming on.  All of it helped me greatly. I’m wondering if there are any rehab programs, similar to pulmonary or cardiac rehab, for dysautonomia patients to learn how to manage and live better with this illness?
Submitted by Joann, Facebook Follower
A: There are some rehabilitation programs that have adopted a version of the Levine exercise protocol. Locally, the cardiac rehabilitation program has created a "POTS program", and I think that other places do have something similar. However, I do not know of a comprehensive program. The Mayo Clinic does have a Pediatric program that is a multi-disciplinary, intensive 3-week outpatient program that is focussed on improving the functioning of these children (and getting them back into school). Often patients learn how to manage and live better with their illness from other patients, through patient advocacy groups, online groups and sometimes local support groups.  
Dr. Satish R. Raj    MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University
Q:   Can autonomic dysfunction cause skin issues like eczema, heat rashes, psoriasis, etc.?  Thank you,
Submitted by Evelyn, DINET Member
A:   No, autonomic disorders typically do not cause eczema, heat rashes or psoriasis. However, psoriasis and some other skin conditions are autoimmune disorders, and autonomic dysfunction can occur secondary to autoimmune disorders.  Therefore, individuals with autoimmune disorders, which may include skin manifestations, can have co-morbid autonomic disorders due to a shared pathophysiology rooted in autoimmunity.
Svetlana Blitshteyn, MD
Director and Founder of Dysautonomia Clinic
Clinical Assistant Professor of Neurology
University at Buffalo School of Medicine and Biomedical Science
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Beyond our small community of patients and supporters, most people have never heard the term “dysautonomia” and, among those who have, it is commonly thought of as a new disease. However, patients have been experiencing the debilitating symptoms of dysautonomia for centuries, if not longer. The condition’s history began with the discovery of the autonomicnervous system around 130-200 AD by Aelius Galen, a Greek physician and philosopher.1 The nervous system was more heavily researched in the 19th century, 2 but arguably remains one of the most poorly understood mechanisms of the human body.
The exact origin of the term dysautonomia is unclear, but the history of one subtype, POTS, is relatively well documented. Some researchers believe that POTS was called Soldier’s Heart or Da Costa Syndrome during the American Civil War and World War I. Soldier’s heart was described as a functional disorder of the heart that involved palpitations, fatigue, and breathlessness,3 and symptoms seemed to manifest after infections like typhoid fever, dysentery, and jaundice. Over 36,000 soldiers were discharged from the Civil War due to “heart disease,” many of whom had the above symptoms.4 There is some confusion about the causal factor(s) of Soldier’s Heart; over the years, it has been associated with anxiety, PTSD, mitral valve prolapse and functional heart disorders. Then, in 1993, Dr. Phillip Low and his research team at Mayo Clinic coined the term POTS.5 Since then, awareness of dysautonomia has grown, but much of that awareness is specific to POTS.
 I am thrilled that, in the past few years, POTS has gained some recognition among medical professionals. It has also reached major media outlets like CNN, Buzzfeed and the New York Times. This publicity has spread awareness about dysautonomia, but it has also led to other subtypes of dysautonomia, such as neurocardiogenic syncope, multiple symptom atrophy, orthostatic intolerance and pure autonomic failure, being misdiagnosed as POTS. Still, others have been told that they do not have dysautonomia because they do not present as a typical POTS patient.
Last year, DINET began to focus on one of these seemingly a-typical dysautonomia presentations—older age, more specifically dysautonomia among post-menopausal women. To explain this age-related focus, and my involvement, I will start with my own story; I was diagnosed with POTS in my early twenties and was told by a couple of specialists that I was a textbook case. My tilt-table results were well within the diagnostic criteria; I was a young female and my symptoms surfaced after a couple of severe infections. Even so, it took me five years, several hospital stays, countless diagnostic tests, invasive surgery, and three major research institutions before a full diagnosis was made with the relatively common EDS/POTS combo. In other words, my textbook experience was tough. With this context, I could not help but think, “What is the diagnostic process like for individuals who do not check all the typical boxes?”
I started doing some work for DINET while this thought occupied the back of my mind. Through DINET, I have I met several individuals who have had similar views, and tirelessly work to challenge some of the predominate dysautonomia stereotypes: “you have anxiety;” “you just need to be more active;” and “you can’t have dysautonomia, you’re too old.” One of these team members, Trudi Davidoff, focused on the stories of DINET members who had particularly difficult diagnostic processes due to ageism. In other words, their doctors operated on the misinformation that dysautonomia only occurs among those of child-bearing age, likely because POTS is thought to surface in adolescence and young adulthood. Some physicians have even refused to test patients for dysautonomia on the basis of being “too old.”
Trudi experienced some ageism in her diagnostic process, and she knew that DINET must acknowledge the subset of patients who are beyond child-bearing age—they too need a platform in the dysautonomia community. Last year, Trudi proposed, developed and administered an informal survey to explore experiences of older patients with dysautonomia. While we have much to learn about this topic, some of the responses have encouraged us to dig deeper: one respondent called for doctors to, “look beyond youth. If an older patient described the same symptoms [as a younger patient] what would you think to test for?” Another respondent described, “I had a doctor tell me, when he couldn't figure out what was wrong, that since I had [already] survived 20 years I was clearly going to [be] fine without a diagnosis.”
These initial findings will only grow more relevant as our population ages. By 2030, one in six individuals are projected to be over sixty, globally, and older adults are expected to comprise 25% of the populations in Europe and North America.6 Dysautonomia is not exempt from worldwide trends of aging, as the research shows the association with age-related diseases like diabetes,7,8 Parkinson’s,9,10 and Alzheimer’s Disease.11 Additionally, patients have only been actively diagnosed with dysautonomia since the early 90s; some of them are older and may be getting an accurate diagnosis for the first time while the rest of us will eventually be referred to as “old.” It is our job, as advocates, to think progressively to ensure that the medical community has an understanding of dysautonomia among all ages.
This is where my role has surfaced – I am currently a graduate student studying gerontology, or the social, cultural, psychological, and biological aspects of aging. Trudi’s work made me think: how many older adults with dysautonomia are undiagnosed or misdiagnosed? Is there an association between dysautonomia and falls? Among older adults who have Parkinson’s, Alzheimer’s and other related conditions, could proper management of dysautonomia symptoms improve their quality of life? I am ecstatic to work with the DINET team to increase awareness about the association between age and dysautonomia as I fulfill my summer internship requirement for graduate school. Together, we decided to tackle this project through two major avenues: 1) to systematically review, and decipher, the scientific studies regarding age and dysautonomia (spoiler: there are so many more than we ever expected!); and 2) to better understand the experiences of individuals 45 years old and older who have dysautonomia. We are at the beginning of our journey, but one thing we have learned is that just as the perception of dysautonomia has shifted through history, we need to challenge our perceptions of dysautonomia to be inclusive of people of all ages.
Our first step is to explore this topic further by hearing about your age-related dysautonomia experiences.  By gathering this information, we hope to better inform DINET, the medical community and the public about the variety of needs and experiences of dysautonomia patients of all ages.  If you are interested in sharing your story for this purpose, we ask that you fill out a short questionnaire, https://www.surveymonkey.com/r/PRXLZ7L The information that is gathered through this survey will be reported in aggregate on DINET platforms, and findings will be available to DINET members in an easily digestible format (bad pun intended). For more information about the questionnaire, this project or the ways the data will be kept and shared, please contact Chelsea Goldstein at Chelsea.goldstein@dinet.org
1.            Ackerknecht EH. The history of the discovery of the vegatative (autonomic) nervous system. Med Hist. 1974;18(1):1-8.
2.            Oakes PC, Fisahn C, Iwanaga J, DiLorenzo D, Oskouian RJ, Tubbs RS. A history of the autonomic nervous system: part II: from Reil to the modern era. Childs Nerv Syst. 2016;32(12):2309-2315. doi:10.1007/s00381-016-3247-3
3.            Wood P. Da Costa’s Syndrome (or Effort Syndrome). Br Med J. 1941;1(4195):805-811.
4.            Soldier’s Heart or Effort Syndrome · Medicine in World War I. Yale University Library. http://exhibits.library.yale.edu/exhibits/show/wwimedicine/diseases-at-the-battlefield/soldier---s-heart-or-effort-sy. Accessed July 9, 2018.
5.            Schondorf R, Low P. Idiopathic postural orthostatic tachycardia syndrome An attenuated form of acute pandysautonomia? Neurology. 1993;43.
6.            World Population Ageing. New York: United Nations; 2015:2-3.
7.            Karupasamy G, Karthick K. Autonomic dysfunction in cardiovascular system of type 2 diabetic mellitus - A bedside evaluation. Int Arch Integr Med. 2018;5(3):30-33.
8.            Costa A, Bosone D, Ramusino MC, et al. Twenty-four-hour blood pressure profile, orthostatic hypotension, and cardiac dysautonomia in elderly type 2 diabetic hypertensive patients. Clin Auton Res. 2016;26(6):433-439.
9.            Jain S, Goldstein DS. Cardiovascular dysautonomia in Parkinson disease: From pathophysiology to pathogenesis. Neurobiol Dis. 2012;46(3):572-580. doi:10.1016/j.nbd.2011.10.025
10.         Rada D, Seco J, Echevarría E, Tijero B, Abecia LC, Gómez-Esteban JC. Dysautonomia Differentially Influences the Effect of Affective Pain Perception on Quality of Life in Parkinson’s Disease Patients. Park Dis. 2016;2016. doi:10.1155/2016/3067426
11.         Zakrzewska-Pniewska B, Gawel M, Szmidt-Salkowska E, Kepczynska K, Nojszewska M. Clinical and Functional Assessment of Dysautonomia and Its Correlation in Alzheimer’s Disease. Am J Alzheimers Dis Dementiasr. 2012;27(8):592-599. doi:10.1177/1533317512459792
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Dysautonomia commonly develops as a complication of a primary illness or is seen in patients with multiple disorders.  These scenarios add a layer of complexity to a patient’s diagnostic journey, as well as their treatment plan.  When one of those illnesses is an eating disorder, the complexities can be significantly magnified.
Eating disorders, which include bulimia nervosa and anorexia nervosa, are defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as follows:
"Feeding and eating disorders are characterized by a persistent disturbance of eating or eating-related behavior that results in the altered consumption or absorption of food and that significantly impairs physical health or psychosocial functioning."
The lifetime prevalence estimates for bulimia nervosa and anorexia nervosa in US adults are 1.0% and 0.6%, respectively. [1] Members of the dysautonomia community are most likely some of the people additionally affected by these severe conditions.
In wading through the medical literature on eating disorders and dysautonomia, several parallels emerged. These parallels can be seen in the demographics of the patient population, as well as in the symptoms both disorders can demonstrate.  For instance, both anorexia nervosa [1] and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, are more commonly observed in women and adolescent girls. [2].  Also, anxiety and depression are common in both dysautonomia [3] and eating disorder patients. [1]
Further, POTS and other forms of orthostatic intolerance can cause gastrointestinal symptoms, such as nausea and vomiting and severe POTS may interfere with eating. [4] [5] A POTS patient and an eating disorder patient may both have disrupted eating patterns, but the underlying causes and appropriate treatments are very different. Although I did not find specific evidence in the literature of such symptoms misattributed to eating disorders, it is not uncommon for a misdiagnosis of anxiety or other psychiatric illness attributed to POTS. [5]
There is also evidence that eating disorders, particularly anorexia nervosa, may cause changes in cardiac function, structure, and rhythm. [6] Children with anorexia and bulimia may exhibit abnormally low blood pressure, slowed heart rates, and high heart rate variability. [7] In the abstract to a 2014 article in Clinical Autonomic Research, Takimoto, et al. reported autonomic abnormalities during tilt-table testing in study participants with anorexia nervosa. [8] Similarly, POTS and other forms of dysautonomia, display hallmark symptoms of high heart rates, abnormal rhythms, and erratic blood pressures. [13] And the irregular response of the autonomic nervous system during the tilt table test is one of the most recognized diagnostic criteria used to confirm a POTS diagnosis.
There are conflicting views in the literature about the extent to which cardiac complications explain the fatality rates in anorexia and bulimia and whether such changes are reversible. [7] [9] Further research into these questions is needed, but what is certain is that eating disorders can be dangerous and require serious attention.  While most forms of dysautonomia are chronic illnesses, they are not considered life-threatening on their own; rather, they are seriously life-altering and oft-times debilitating. Dysautonomia also requires serious attention and treatment.
Stewart writes that it is essential to distinguish between eating disorders and POTS, noting that anorexia nervosa can cause “POTS-like” orthostatic intolerance in its early stages and young women referred for treatment for POTS symptoms may be underweight.[8]  The similarities in patient demographics and overlap in symptoms between eating disorders and POTS have the potential to complicate the diagnostic picture further.
Patients can have both conditions, of course, which may present additional diagnostic and treatment challenges. An untreated eating disorder might worsen pre-existing orthostatic intolerance. Since poorly managed orthostatic intolerance can cause limitations in many areas of life, such conditions, if unrecognized, could conceivably pose an additional challenge for eating disorder patients in achieving specific functional goals as part of treatment.
There remains much to learn about both eating disorders and dysautonomia. Both can have a profound and long-lasting impact on a person’s life and health at an important point in that person’s development.  Accurate diagnosis and appropriate treatment are vital.
It is important to note that although the focus of this article was on anorexia, bulimia and largely POTS, there are many other eating disorders and dysautonomias. Further, these conditions can occur in people of any gender and at any stage of life.  If you or someone you know is dealing with an eating disorder or dysautonomia, please consult a qualified medical professional without delay.
National Institute of Mental Health, "Health Information: Statistics," November 2017. [Online]. Available: https://www.nimh.nih.gov/health/statistics/eating-disorders.shtml#part_155058.
R. Freeman, W. Wieling, F. B. Axelrod, D. G. Benditt, E. Benarroch, I. Biaggioni, W. P. Cheshire, T. Chelimsky, P. Cortelli, C. H. Gibbons, D. S. Goldstein, R. Hainsworth, M. J. Hilz, G. Jacob, H. Kaufmann, J. Jordan, L. A. Lipsitz, B. D. Levine, P. A. Low, C. Mathias, S. R. Raj, D. Robertson, P. Sandroni, I. Schatz, R. Schondorff, J. M. Stewart and J. G. van Dijk, "Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome," Clinical Autonomic Research, no. 12, pp. 69-72, April 2011.
J. N. Johnson, K. J. Mack, N. L. Kuntz, C. K. Brands, C. J. Porter and P. R. Fischer, "Postural Orthostatic Tachycardia Syndrome: A Clinical Review," Pediatric Neurology, vol. 42, no. 2, pp. 77-85, February 2010.
S. D. Sullivan, J. Hanauer, P. C. Rowe, D. F. Barron, A. Darbari and M. Oliva-Hemker, "Gastrointestinal Symptoms Associated with Orthostatic Intolerance," Journal of Pediatric Gastroenterology and Nutrition, no. 40, pp. 425-428, April 2005.
B. P. Grubb, "Postural Tachycardia Syndrome," Circulation, vol. 117, no. 21, pp. 2814-2817, May 2008.
M. A. Spaulding-Barclay, J. Stern and P. S. Mehler, "Cardiac changes in anorexia nervosa," Cardiology in the Young, 2016.
J.-A. Palma, L. Norcliffe-Kaufmann, C. Fuente-Mora, L. Percival, C. L. Spalink and H. Kaufmann, "Disorders of the Autonomic Nervous System: Autonomic Dysfunction in Pediatric Practice," in Swaiman's Pediatric Neurology, 6th Edition ed., Elsevier, 2017, pp. 1173-1183.
J. M. Stewart, "Common Syndromes of Orthostatic Intolerance," Pediatrics, vol. 131, no. 5, pp. 968-980, May 2013.
NINDS, "Postural Tachycardia Syndrome Information Page," 18 June 2018. [Online]. Available: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page.
Y. Takimoto, K. Yoshiuchi, T. Ishizawa, Y. Yamamoto and A. Akabayashi, "Autonomic dysfunction responses to head-up tilt in anorexia nervosa [Abstract]," Clinical Autonomic Research, vol. 24, no. 4, pp. 175-181, August 2014.
K. V. Sachs, B. Harnke, P. S. Mehler and M. J. Krantz, "Cardiovascular complications of anorexia nervosa: A systematic review," International Journal of Eating Disorders, vol. 49, no. 3, pp. 238-248, December 2015.
American Psychiatric Association, "Feeding and Eating Disorders," in Diagnostic and Statistical Manual of Mental Disorders, 5th Edition ed., https://doi.org/10.1176/appi.books.9780890425596.dsm10, 2013.
[13] Grubb, B.P. & Karas, B. (1999) Clinical disorders of the autonomic nervous system associated with orthostatic intolerance. "Pacing and Clinical Electrophysiology" 22, 798-810
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At first glance, Caryn is living an enviable kind of life: she is 56 years old, living in South Florida and is the Director of Imaging Services for a national radiology group. In the short time, I spent talking with Caryn, her positive disposition and tremendous strength were evident through all that she said. So, while she certainly seems to be living a great life, I suspect that not many people know how hard Caryn has fought to build this life or how much she continues to overcome to achieve it. At age fifty, she was diagnosed with neurocardiogenic syncope (NCS) after a harrowing medical battle that involved misdiagnosis, emergency surgery and nearly losing her life. Even more, all of this happened not long after she overcame thyroid cancer.
Caryn’s syncope began in childhood. She regularly passed out at doctors’ offices and during anxiety-evoking experiences. She was diagnosed with epilepsy at age sixteen and was given anti-seizure medications. She continued for nearly three decades believing she had epilepsy. Then, in 2003, she was diagnosed with thyroid cancer. Her thyroid was removed, but cancer returned two years later. She recovered after a second major surgery and months of rehabilitation. By age 45, her cancer was in remission and she thought her battle with illness was mostly over. However, she discovered she was originally misdiagnosed with epilepsy during a routine neurology visit, and the physician proceeded to help her off the anti-seizure medications. She did not experience any seizures after that, though her syncope-related symptoms that began in childhood remained.
In 2011, a particularly difficult syncope episode caused her heart to stop, which was followed by several more similar experiences. She had a pacemaker surgically implanted to stabilize her heart rate, but she felt severely ill shortly after the surgery. When she returned to the hospital, she found she had contracted MRSA accompanied by pulmonary embolisms, an infection in her heart and fluid in her lungs. Thankfully, she recovered after months of medical care and rehabilitation, but not without difficulties. She sensed the panic in the eyes of her physicians and family members during her battle with MRSA, and she knew she was near death. Even as she recovered, she feared losing her job as an MRI technician because she could not be around the equipment with a pacemaker. Her story began to turn when she saw a cardiologist who was able to diagnose her with NCS at the end of her first appointment. As he handed her a pamphlet about the condition, she could not believe that her extensive medical journey was culminating in a diagnosis that was “just that simple.”
Caryn’s diagnosis was empowering because she finally had the knowledge to help herself cope. She has learned to prioritize activities that are important to her, like exercise. She knows she will be tired after workouts, and she now trains based on her heart rate. She did lose her job as an MRI technician, but this led her to build new dreams and now has a career she loves. She knows to talk herself through the particularly difficult moments and listens to her body when she needs to lay flat. Her experience of dysautonomia has taught her to live in the moment, and to use her own voice to take care of her needs. She has also learned to keep a small circle of support around her including family, friends and supportive colleagues.
Now, with a diagnosis of NCS and her cancer in complete remission, Caryn reflected on her experiences: “I thought cancer was hard until this hit me.”  Cancer is hard. Individuals who experience it are heroes in their own rights. But, Caryn’s comment made me think—what component(s) of her NCS experience made it harder than her cancer experience? Caryn shared that there was always the possibility that her cancer could be cured, that same possibility does not exist for NCS. She has to think about NCS every day, and every day she knows NCS will be with her tomorrow.
As I continue to resonate on this point, I see that everyone’s experiences of illness, no matter the origin, are harrowing in their own way. But, one major dissonance I can see between the cancer community and the dysautonomia community is the level of awareness, research and education about the respective diseases. I hope the future brings a cure for cancer just as much as the next person, yet I also see the tremendous strides our society has achieved regarding cancer treatment and prevention over the last several decades. This type of relative success in the cancer community is motivating and inspiring. Perhaps one day, with continued efforts in awareness and education, dysautonomia will be better understood by the medical community and the general public, too. I hope such awareness and education will minimize the misdiagnoses, improper medication treatments and surgical complications experienced by many dysautonomia patients. Until then, we will continue to share the heroic and inspiring stories of individuals, like Caryn, to work toward that goal.
From DINET:  If you would like to be considered for a future Meet the Member article, please email webmaster@dinet.org
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I thought I was there, that I had reached the calm point where knowledge and experience were making it easier to handle the endless symptoms that go on 24/7/365. Life goes on, and I had to learn to manage it; water, electrolytes, healthy food, exercise, medicine, self-education, and introspection all combined to help get me to where I am physically and emotionally stronger though attacks. My EP, with a wink in his eye, calls them my neuro-cardio-vaso-vagaly-things. We both then smile because I don’t collapse so much anymore.
I began telling myself that I was content. That an ideology of ‘what can I do’ was okay and would quickly replace ‘this is what we’re doing today, and then we can do this tonight and that tomorrow.’ I had already accepted that I could not do most of my old work, and I cut down to what I can manage. The amount of energy or non-foggy thoughts you can crank out does affect your life. But I am lying to myself when I say I’d be doing less in my 60s anyway--didn’t I read that 60 is supposed to be the new 40?  If I found acceptance, why am I not enjoying myself?
I walk the dogs late at night and speak to the heavens asking them the hows, ways, and means of my life. The answers come through natural shows of clouds parting before a full moon, with so many geese flying across the sky I could feel their wingbeats, the sounds of mockingbirds singing at midnight, the sound of the wind whispering through the trees; I  even have been graced with shooting stars. And in all of that, there is no answer for me but to acknowledge that the world is still beautiful after dark. I tried going down to the beach and screaming at the ocean. It does nothing except give you a sore throat and cuts on your feet from the clam shells. I might as well pound sand.
Acceptance wasn’t working for me. It’s been something nice to tell doctors and friends who want to hear anything about getting better. I think it makes it easier for them, as most people don’t understand much about dysautonomia, they only know it is bad and want you to get better. And, when you run into them at the store, you smile and say, ‘Oh, I’m doing a lot better.’ But then you’re nearly fainting at the register five minutes later and holding onto the cart handle for support; they don’t see you get through it, go home, and crash on the couch before you can empty your bags.  This is unacceptable to me. I want my energy and my life back.
I was out in the garden when I made the decision to un-accept acceptance. I made this determination while looking at the state of my garden. Some of the beds have been fallow since my symptoms began four years ago and are looking more like a young forest than the once fertile and well-tended rows of tomatoes, veggies, and herbs.  Some of the beds are in transition though, and I was able to prune a few back and get out the weeds before the heat of summer came on. I have partially restored them, and I struggle to keep the weeds out. But the zinnias I sowed are starting to bloom and attract butterflies.  Of all of the gardens, there is one bed that I am content with—it’s been cut back, reworked, replanted and sown with wildflowers--it is thriving and growing and blooming.
It was these three beds that brought me to my decision—the wild young forest, the in-between bed fighting off weeds while still blooming bright, and the finished bed where the wildflowers are healthy and abundant, bees and butterflies are busy at the blooms, and the weeds don’t have room to sprout and take hold. To me, my own backyard became the symbolic comparison of my struggle and effort to get symptoms under control. The wild and uncontrolled, alongside that which is still in work and can go either way if not kept in check, bordering that which is satisfying and right and good. I made the decision, that while I can, and for as long as I can, I will not be complacent and sit back. I must tend my life as I tend my garden.  I know I can control some of it and each time I make a little effort I get more under control. Water, nutrients, and fresh air can make a big difference in how I look and feel too. I am ready to challenge myself to improve; I am not prepared to accept that my life has gone to the weeds.
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