Education Library

The DSN Education Library contains resources on dysautonomia that may be useful for both providers and patients. You can use the menu above to navigate to pages that discuss some specific forms of dysautonomia. This page contains handouts, brochures, and scholarly articles.

Table of Contents:
 
 
 

Handouts and Brochures

Provider Handouts

POTS Medical Handout (Dysautonomia Support Network) PDF

POTS Nursing Handout (Dysautonomia Support Network) PDF

Patient Handouts

POTS Patient Handout (Dysautonomia Support Network) PDF

Informational Bochures

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General Journal Articles

Overview

Dysautonomias: Clinical Disorders of the Autonomic Nervous System PDF

  • Goldstein DS, Robertson D, Esler M, Straus SE, Eisenhofer G. Dysautonomias: Clinical Disorders of the Autonomic Nervous System. Ann Intern Med. 2002;137:753-763. doi:10.7326/0003-4819-137-9-200211050-00011

Orthostatic Changes in Patients with Dysautonomia (Tilt Table Testing) PDF

  • Nilsson D, Sutton R, Tas W, Burri P, Melander O, Fedorowski A. Orthostatic Changes in Hemodynamics and Cardiovascular Biomarkers in Dysautonomic Patients. Björklund P, ed. PLoS ONE. 2015;10(6):e0128962. doi:10.1371/journal.pone.0128962.

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POTS Journal Articles

Good Overview of POTS

Mayo Clinic POTS Review PDF

  • Benarroch EE. Postural Tachycardia Syndrome: A Heterogeneous and Multifactorial Disorder. Mayo Clinic Proceedings. 2012;87(12):1214-1225. doi:10.1016/j.mayocp.2012.08.013.

Hyperadrenergic POTS PDF

  • Kanjwal K, Saeed B, Karabin B, Kanjwal Y, Grubb BP. Clinical presentation and management of patients with hyperadrenergic postural orthostatic tachycardia syndrome. A single center experience. Cardiol J. 2011;18(5):527-31. PubMed PMID: 21947988.

The POTS (by Dr. Grubb)

  • Grubb BP, Kanjwal Y, Kosinski DJ. The postural tachycardia syndrome: a concise guide to diagnosis and management. J Cardiovasc Electrophysiol. 2006 Jan;17(1):108-12. Review. PubMed PMID: 16426415.

POTS Diagnosis

Diagnosing POTS, Tilt Table vs. Standing Hemodynamic PDF

  • Plash WB, Diedrich A, Biaggioni I, Garland EM, Paranjape SY, Black BK, Dupont WD, Raj SR. Diagnosing postural tachycardia syndrome: comparison of tilt testing compared with standing haemodynamics. Clin Sci (Lond). 2013 Jan;124(2):109-14. PubMed PMID: 22931296; PubMed Central PMCID: PMC3478101.

Unspecified POTS

Diurnal Variaibility in POTS PDF

  • Brewster JA, Garland EM, Biaggioni I, Black BK, Ling JF, Shibao CA, Robertson D, Raj SR. Diurnal variability in orthostatic tachycardia: implications for the postural tachycardia syndrome. Clin Sci (Lond). 2012 Jan;122(1):25-31. doi: 10.1042/CS20110077. PubMed PMID: 21751966; PubMed Central PMCID: PMC3172399.

Autoimmune Basis for POTS PDF

  • Li H, Yu X, Liles C, Khan M, Vanderlinde-Wood M, Galloway A, Zillner C, Benbrook A, Reim S, Collier D, Hill MA, Raj SR, Okamoto LE, Cunningham MW, Aston CE, Kem DC. Autoimmune basis for postural tachycardia syndrome. J Am Heart Assoc. 2014 Feb 26;3(1):e000755. doi: 10.1161/JAHA.113.000755. PubMed PMID: 24572257; PubMed Central PMCID: PMC3959717.

Brain Fog in POTS PDF

  • Ross AJ, Medow MS, Rowe PC, Stewart JM. What is brain fog? An evaluation of the symptom in postural tachycardia syndrome. Clin Auton Res. 2013 Dec;23(6):305-11. doi: 10.1007/s10286-013-0212-z. Epub 2013 Sep 3. PubMed PMID: 23999934; PubMed Central PMCID: PMC3896080.

A Prospective, 1-year Follow Up Study of POTS PDF

  • Kimpinski K, Figueroa JJ, Singer W, et al. A Prospective, 1-Year Follow-up Study of Postural Tachycardia Syndrome. Mayo Clinic Proceedings. 2012;87(8):746-752. doi:10.1016/j.mayocp.2012.02.020.

Some CFS Patients Have POTS PDF

  • Lewis I, Pairman J, Spickett G, Newton JL. Clinical characteristics of a novel subgroup of chronic fatigue syndrome patients with postural orthostatic tachycardia syndrome. J Intern Med. 2013 May;273(5):501-10. doi: 10.1111/joim.12022. Epub 2013 Jan 7. PubMed PMID: 23206180.

Pregnancy/Gynecology in POTS

Gynecological Disorders and Menstrual Cycle Lightheadedness in POTS PDF

  • Peggs KJ, Nguyen H, Enayat D, Keller NR, Al-Hendy A, Raj SR. Gynecologic disorders and menstrual cycle lightheadedness in postural tachycardia syndrome. Int J Gynaecol Obstet. 2012 Sep;118(3):242-6. doi: 10.1016/j.ijgo.2012.04.014. Epub 2012 Jun 20. PubMed PMID: 22721633; PubMed Central PMCID: PMC3413773.

Menstrual Cycle Affects POTS PDF

  • Fu Q, VanGundy TB, Shibata S, Auchus RJ, Williams GH, Levine BD. Menstrual cycle affects renal-adrenal and hemodynamic responses during prolonged standing in the postural orthostatic tachycardia syndrome. Hypertension. 2010 Jul;56(1):82-90. doi: 10.1161/HYPERTENSIONAHA.110.151787. Epub 2010 May 17. PubMed PMID: 20479333; PubMed Central PMCID: PMC2894615.

Pregnancy in POTS: Maternal &Fetal Outcomes PDF 

  • Kimpinski K, Iodice V, Sandroni P, Low PA. Effect of pregnancy on postural tachycardia syndrome. Mayo Clin Proc. 2010 Jul;85(7):639-44. doi: 10.4065/mcp.2009.0672. Epub 2010 Jun 1. PubMed PMID: 20516426; PubMed Central PMCID: PMC2894719.

Outcomes of Pregnancy in POTS

  • Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Outcomes of pregnancy in patients with preexisting postural tachycardia syndrome. Pacing Clin Electrophysiol. 2009 Aug;32(8):1000-3. doi: 10.1111/j.1540-8159.2009.02430.x. PubMed PMID: 19659618.

Anxiety/Mental Health in POTS

Excessive Heart Rate in POTS Not Due to Anxiety PDF

  • Masuki S, Eisenach JH, Johnson CP, Dietz NM, Benrud-Larson LM, Schrage WG, Curry TB, Sandroni P, Low PA, Joyner MJ. Excessive heart rate response to orthostatic stress in postural tachycardia syndrome is not caused by anxiety. J Appl Physiol (1985). 2007 Mar;102(3):896-903. Epub 2006 Nov 16. PubMed PMID: 17110507.

Pathophysiology of POTS

Cardiac Origins of POTS PDF

  • Fu Q, Vangundy TB, Galbreath MM, Shibata S, Jain M, Hastings JL, Bhella PS, Levine BD. Cardiac origins of the postural orthostatic tachycardia syndrome. J Am Coll Cardiol. 2010 Jun 22;55(25):2858-68. doi: 10.1016/j.jacc.2010.02.043. PubMed PMID: 20579544; PubMed Central PMCID: PMC2914315.

Sleep & Quality of Life

Sleep Quality and Diminished Quality of Life in POTS PDF

  • Bagai K, Song Y, Ling JF, Malow B, Black BK, Biaggioni I, Robertson D, Raj SR. Sleep disturbances and diminished quality of life in postural tachycardia syndrome. J Clin Sleep Med. 2011 Apr 15;7(2):204-10. PubMed PMID: 21509337; PubMed Central PMCID: PMC3077350.

Estimation of Sleep in POTS PDF

  • Bagai K, Wakwe CI, Malow B, Black BK, Biaggioni I, Paranjape SY, Orozco C, Raj SR. Estimation of sleep disturbances using wrist actigraphy in patients with postural tachycardia syndrome. Auton Neurosci. 2013 Oct;177(2):260-5. doi: 10.1016/j.autneu.2013.02.021. Epub 2013 Mar 26. PubMed PMID: 23538032; PubMed Central PMCID: PMC3700681.

Quality of Life in POTS

  • Benrud-Larson LM, Dewar MS, Sandroni P, Rummans TA, Haythornthwaite JA, Low PA. Quality of life in patients with postural tachycardia syndrome. Mayo Clin Proc. 2002 Jun;77(6):531-7. PubMed PMID: 12059122

Medications For POTS

Desmopressin in POTS PDF

  • Coffin ST, Black BK, Biaggioni I, Paranjape SY, Orozco C, Black PW, Dupont WD, Robertson D, Raj SR. Desmopressin acutely decreases tachycardia and improves symptoms in the postural tachycardia syndrome. Heart Rhythm. 2012 Sep;9(9):1484-90. doi: 10.1016/j.hrthm.2012.05.002. Epub 2012 May 3. PubMed PMID: 22561596; PubMed Central PMCID: PMC3419341.

Melatonin in POTS PDF

  • Green EA, Black BK, Biaggioni I, Paranjape SY, Bagai K, Shibao C, Okoye MC, Dupont WD, Robertson D, Raj SR. Melatonin reduces tachycardia in postural tachycardia syndrome: a randomized, crossover trial. Cardiovasc Ther. 2014 Jun;32(3):105-12. doi: 10.1111/1755-5922.12067. PubMed PMID: 24495468; PubMed Central PMCID: PMC3999238.

Effects of SSRI in POTS PDF

  • Mar PL, Raj V, Black BK, Biaggioni I, Shibao CA, Paranjape SY, Dupont WD, Robertson D, Raj SR. Acute hemodynamic effects of a selective serotonin reuptake inhibitor in postural tachycardia syndrome: a randomized, crossover trial. J Psychopharmacol. 2014 Feb;28(2):155-61. doi: 10.1177/0269881113512911. Epub 2013 Nov 13. PubMed PMID: 24227635; PubMed Central PMCID: PMC3956655.

Volume Loading and Pressor Agents in POTS

  • Jacob G, Shannon JR, Black B, Biaggioni I, Mosqueda-Garcia R, Robertson RM, Robertson D. Effects of volume loading and pressor agents in idiopathic orthostatic tachycardia. Circulation. 1997 Jul 15;96(2):575-80. PubMed PMID: 9244228.

Pyridostigmine in POTS PDF

  • Kanjwal K, Karabin B, Sheikh M, Elmer L, Kanjwal Y, Saeed B, Grubb BP. Pyridostigmine in the treatment of postural orthostatic tachycardia: a single-center experience. Pacing Clin Electrophysiol. 2011 Jun;34(6):750-5. doi: 10.1111/j.1540-8159.2011.03047.x. Epub 2011 Mar 16. PubMed PMID: 21410722.

Exercise in POTS

Exercise vs. Propanolol in POTS PDF

  • Fu Q, Vangundy TB, Shibata S, Auchus RJ, Williams GH, Levine BD. Exercise training versus propranolol in the treatment of the postural orthostatic tachycardia syndrome. Hypertension. 2011 Aug;58(2):167-75. doi: 10.1161/HYPERTENSIONAHA.111.172262. Epub 2011 Jun 20. PubMed PMID: 21690484; PubMed Central PMCID: PMC3142863.

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MCAD Journal Articles

MCAD Diagnosis and Treatment

MCAD Diagnostic Criteria PDF

MCAD Workup and Therapeutic Options PDF

In Depth Article on Medication for MCAD PDF

Allergic Reactions and the Nervous System PDF

Mast Cell Activation Disorder in Hyperadrenergic POTS Patients PDF

  • Shibao C, Arzubiaga C, Roberts LJ 2nd, Raj S, Black B, Harris P, Biaggioni I. Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders. Hypertension. 2005 Mar;45(3):385-90. Epub 2005 Feb 14. PubMed PMID: 15710782.

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Orthostatic Hypotension and Neurocardiogenic Syncope Journal Articles

Orthostatic Hypotension

Preventing and Treating OH PDF

  • Figueroa JJ, Basford JR, Low PA. Preventing and treating orthostatic hypotension: As easy as A, B, C. Cleveland Clinic journal of medicine. 2010;77(5):298-306. doi:10.3949/ccjm.77a.09118.

Managed Care Approach to the Treatment of OH PDF

  • Isaacson SH. Managed care approach to the treatment of neurogenic orthostatic hypotension. Am J Manag Care. 2015 Oct;21(13 Suppl):s258-68. PubMed PMID: 26790110.

NCS

Neurocardiogenic Syncope and Related Disorders of Orthostatic Intolerance PDF

  • Grubb BP. Neurocardiogenic syncope and related disorders of orthostatic intolerance. Circulation. 2005 Jun 7;111(22):2997-3006. Review. PubMed PMID: 15939833.

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MSA and PAF Journal Articles

MSA & PAF

Supine Hypertension and OH in Autonomic Failure PDF

  • Goldstein DS, Pechnik S, Holmes C, Eldadah B, Sharabi Y. Association between supine hypertension and orthostatic hypotension in autonomic failure. Hypertension. 2003 Aug;42(2):136-42. Epub 2003 Jun 30. Erratum in: Hypertension. 2003 Oct;43(4):e12. PubMed PMID: 12835329.

Multiple System Atrophy: A Clinical and Neuropathological Perspective PDF

  • Ubhi K, Low P, Masliah E. Multiple System Atrophy: A Clinical and Neuropathological Perspective. Trends in neurosciences. 2011;34(11):581-590. doi:10.1016/j.tins.2011.08.003.

Autonomic Dysfunction in Parkinsonian MSA vs. Parkinson’s Disease PDF

  • Roy S, Jaryal AK, Srivastava AK, Deepak KK. Cardiovagal Baroreflex Sensitivity in Parkinson’s Disease and Multiple-System Atrophy. Journal of Clinical Neurology (Seoul, Korea). 2016;12(2):218-223. doi:10.3988/jcn.2016.12.2.218.

Orthostatic Hypotension in MSA PDF

  • Sun Z, Jia D, Shi Y, et al. Prediction of orthostatic hypotension in multiple system atrophy and Parkinson disease. Scientific Reports. 2016;6:21649. doi:10.1038/srep21649.

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Ehlers-Danlos Syndrome Journal Articles

Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorder

2017 International EDS/HSD Classification Standards For Medical Professionals

  •  Castori M, Tinkle B, Levy H, Grahame R, Malfait F, Hakim A. 2017. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet Part C Semin Med Genet 175C:148–157.

 

2017 International EDS/HSD Classifications For Patients/ Non-Experts from The Ehlers-Danlos Society

 

Nursing Management of Patients with Danlos Syndrome PDF

  • Anderson, L. Nursing management of patients with Ehlers-Danlos syndrome. American Journal of Nursing, 2015, 115(7), 38-46.

Coexistence of Ehlers-Danlos Syndrome and Multiple Sclerosis PDF

  • Ozlece, H., Ilik, F., Huseyinoglu, N. Coexistence of Ehlers-Danlos syndrome and multiple sclerosis. Iran Journal of Neurology, 2015, 14(2), 116-117.

Ehlers-Danlos Syndrome and POTS PDF

  • Grigoriou, E., Bros, J., Dormans, J. Postural orthostatic tachycardia syndrome: association with Ehlers-Danlos syndrome and orthopedic considerations. Clinical Orthopedics and Related Research, 2015, 473(2), 722-728.

Neurological Manifestations of Ehlers-Danlos Syndrome PDF

  • Castori, M., Voermans, N. Neurological manifestations of Ehlers-Danlos Syndrome(s): a review. Iran Journal of Neurology, 2014, 13(4), 190-280.

Chronic Pain in EDS PDF

  • Scheper, M., de Vries, J., Verbunt, J., Engelbert, R. Chronic pain in hypermobility syndrome and Ehlers-Danlos syndrome (hypermobility type): it is a challenge. Journal of Pain Research (2015), 8, 591-601.

Pregnancy Related Complications in VEDS PDF

  • Murray, M., Pepin, M., Peterson, S., Byers, P. Pregnancy-related deaths and complications in women with vascular Ehlers-Danlos syndrome. Genetics in Medicine (2014), 16, 874-880.

OB/GYN Complications in EDS

  • Hurst, B., Lange S., Kullstam, S., et al. Obstetric and gynecologic challenges in women with Ehlers-Danlos syndrome. Obstetric Gynecology, 2014, 123(3), 506-513.

Anesthesia and Perioperative Care of EDS Patients PDF

  • Wiesmann, T., Castrori, M., Malfait, F., Wulf, H. Recommendations for anesthesia management in patients with Ehlers Danlos syndrome(s). Orphanet Journal of Rare Diseases (2014), 9(109), 1-9.

EDS, Hypermobility Type

Ehlers-Danlos Syndrome Hypermobility Type PDF

  • Levy, H. Ehlers-Danlos syndrome, hypermobility type.  In Pagon R., Adam M., Ardinger H. et al., ed. Gene Reviews, Seattle (WA): University of Washington, Seattle; 1993-2016.

EDS, Vascular Type

Variability in V-EDS presentation with COL3A1 genetic mutation PDF

  • Jorgensen A., Fagerheim, T., Rand-Hendriksen, S., et al., Vascular Ehlers-Danlos syndrome in siblings with biallelic COL3A1 sequence varienats and marked clinical variability in the extended family. European Journal of Human Genetics (2015), 23(6), 796-802.

EDS,Kyphoscoliotic Type

Ehlers-Danlos Syndrome, Kyphoscoliotic Form

  • Yeowell, H., Steinmann B.. Ehlers-Danlos syndrome, kyphoscoliotic form.  In Pagon R., Adam M., Ardinger H. et al., ed. Gene Reviews, Seattle (WA): University of Washington, Seattle; 1993-2016.

EDS, Arthrochalasia Type

Presentation and Diagnosis of Arthrochalasia Type EDS PDF

  • Klaasens, M., Reinstein, E., Hillhorst-Hofstee, Y., et al. Ehlers-Danlos Arthrochalasia type (VIIA-B)- expanding the phenotype: from prenatal life through adulthood. Clinical Genetics, 2012, 82(2), 121-130.

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Gastroparesis Journal Articles

Overview of Gastroparesis

Overview of Gastroparesis Causes, Symptoms, Diagnosis, and Management PDF

  • Parkman, H., Camilleri, M., Farrugia, G. et al. Gastroparesis and functional dyspepsia: Excerpts from the AGA/ ANMS meeting. Neurogastroenterology Motility. 2010, 22(2), 113-133.

Variability of Symptoms in Gastroparesis  PDF

  • Parkman, H., Yates, K., Hasler, W., et al. Clinical features of idiopathic gastroparesis vary with sex, body mass, symptom onset, delay in gastric emptying, and gastroparesis severity. Gastroenterology, 2011, 140(1), 101-115.

Gastroparesis Diagnosis and Testing

Recommendations for Measuring Gastric Emptying PDF

  • Abell, T., Camilleri, M., Donohue, K., et al. Consensus recommendations for gastric emptying scitingraphy A joint report of the American Neurogastroenterology and Motility Society and the Society of Nuclear Medicine. Journal of Nuclear Medicine Technology, 2008, 36(1), 44-52.

Mayo Clinic Autoimmune Gastrointestinal Dysmotility Evaluation Algorithm PDF

  • Mayo Foundation for Medical Education and Research. Autoimmune gastrointestinal dysmotility evaluation algorithm. 2015.

Gastroparesis Treatment and Management

New Drug Phase 2 Clinical Trial Results: Relamorelin Reduces Vomiting Frequency and Severity and Accelerates Gastric Emptying PDF

  • Lembo A, Camilleri M, McCallum R, Sastre R, Breton C, Spence S, White J, Currie M, Gottesdiener K, Stoner E; RM-131-004 Trial Group. Relamorelin Reduces Vomiting Frequency and Severity and Accelerates Gastric Emptying in Adults With Diabetic Gastroparesis. Gastroenterology. 2016 Jul;151(1):87-96.e6. doi: 10.1053/j.gastro.2016.03.038. Epub 2016 Apr 4. PubMed PMID: 27055601. 

Ghrelin May Enhance Gastric Emptying PDF

  • Murray, C., Martin, N., Patterson, M. et al. Ghrenlin enhances gastric emptying in diabetic gastroparesis: A double blind, placebo controlled, crossover study. Gut, 2005, 54, 1693-1698.

Pyridostigmine for Autoimmune Gastrointestinal Dysmotility PDF

  • Pasha, S., Lunsford, T., Lennon,V. Autoimmune gastrointestinal dysmotility treated successfully with pyridostigmine. Gastroenterology, 2006,1(31), 1592-1596.

Clinical Effects of Iberogast for Functional Dyspepsia and Gastroparesis PDF

  • Braden, B., Caspary, W., Borner, N., et al. Clinical effects of STW 5 (Iberogast) are not based on acceleration of gastric emptying in patients with functional dyspepsia and gastroparesis. Neurogastroentertology and Motility, 2009, 21(6), 632-638.

Clinical Guideline: Management of Gastroparesis PDF

  • Camilleri, M., Parkman, H., Shafi, M., et al. Clinical guideline: Management of gastroparesis. American Journal of Gastroenterology, 2013, 108(1), 18-38.

Botox Injections for Gastroparesis PDF

  • Ukleja, A., Tandon, K., Shah, K, et al. Endoscopic botox injections in therapy of refractory gastroparesis. World Journal of Gastrointestinal Endoscopy, 2015, 10(7), 790-798.

A Review of Gastric Electrical Stimulators (“gastric pacemaker”) for Gastroparesis PDF

  • Lal, N., Livemore, S., Dunne, D., et al. Gastric electrical stimulation with the enterra system: A systematic review. Gastroenterology research and practice, 2015, 1-9.

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Neuropathy Journal Articles

Overview

Cleveland Clinic Overview of Small Fiber Neuropathy PDF

  • Tavee, J, Zhou, L. Small fiber neuropathy: A burning problem. Cleveland Clinic Journal of Medicine, 2009, 76(5), 297-305.

Idiopathic Autonomic Neuropathy

  • Sandroni, P., Vernino, S., Klein C., et al. Idiopathic autonomic neuropathy: Comparison of cases seropositive and seronegative for ganglionic acetycholine receptor antibody. Journal of the American Medical Association Neurology, 2004, 61(1), 44-48.

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Work & School Resources

K - 12 school

Educating the Dysautonomia Student: An Introduction for Teachers and Other School Personnel (Dysautonomia Youth Network of America) Download PDF

Higher Education (college, university)

Suggested Dysautonomia Accommodations in Higher Education (DSN) Download PDF

Rights of Students with Disabilities in Higher Education (Disability Rights California) Download PDF

Educating the Dysautonomia Student: Dysautonomia In The College Setting (Dysautonomia Youth Network of America) Download PDF

Work

Nurses/Healthcare Workers with Disabilities (JAN) Download PDF

Accommodation Ideas for Ehlers-Danlos Syndrome (JAN) Download PDF

 

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Other Resources & Links

Resource guides

Ehlers-Danlos Syndrome Resource Guides from Ehlers-Danlos Society/EDNF

Medical Resource Guide, Dentistry Resource Guide, ER and Surgery Information, Pain Management Resource Guide, and more.