LisaColumbus Posted January 23, 2005 Report Share Posted January 23, 2005 Hi all,It seems that my disability insurance company has no clue what NCS or POTS does. I have been advised to mail them documentation explaining the condition with specific information as to how "objective findings" (ie very low blood pressure, alternating tachycardia and bradycardia etc) affect day to day life and create a disabling situation. I have found many links explaining the condition but none explaining why it makes me so extremely fatigued, or why it causes headaches and brain fog etc. If anyone has any links available I would really appreciate it!Thanks!Lisa Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 23, 2005 Report Share Posted January 23, 2005 oops Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 23, 2005 Report Share Posted January 23, 2005 Lisa, please see the primary dinet site at http://www.dinet.orgyou can then print the citations from each section on overview1. Benrud-Larson, L. M., Dewar, M. S., Sandroni, P., Rummans, T. A., Haythornthwaite, J. A., & Low, P. A. (2002, June). Quality of life in patients with postural tachycardia syndrome. Mayo Clinic Proceedings, 77, 531-537. Full text: http://www.mayoclinicproceedings.com/inside.asp? AID=112&UID=2. Brunner, L. S. & Suddarth, D. S. (2000). Assessment of cardiovascular function. In S. C. Smeltzer & B. G. Bare (Eds.), Brunner and Suddarth's textbook medical-surgical nursing (pp. 532-563). Philadelphia, PA: Lippincott Williams and Wilkins.3. Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.4. Grubb, B. P. (2002, October). The heterogeneity of symptoms related to dysautonomia. Symposium conducted at the meeting of the National Dysautonomia Research Foundation Northwest Ohio Support Group. Toledo, Ohio.5. Grubb, B. P., & McMann, M. C. (2001). The Fainting Phenomenon: Understanding why people faint and what can be done about it. New York: Futura Publishing Company.6. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.7. Robertson, D. (1999). The epidemic of orthostatic tachycardia and orthostatic intolerance. The American Journal of the Medical Sciences, 317, 75-77.and causes1. Autonomic Dysfunction. (2000). The WorldWide Anaesthetist. http://anaesthetist.com/anaes/patient/ans.htm2. Bernstein, R. S., Pierson, R. N. 3rd., Ryan, S. F., & Crespin S. B. (1979). Adipose cell morphology and control of lipolysis in a patient with partial lipodystrophy. Metabolism, 28, 519-526. PMID: 449692 [PubMed - indexed for MEDLINE]3. Carson, R. P., Appalsamy, M., Diedrich, A., Davis, T. L., & Robertson, D. (2001). Animal model of neuropathic tachycardia syndrome. Hypertension, 37, 1357-1361. Full text: http://hyper.ahajournals.org/cgi/content/full/37/6/13574. Gazit, Y., Nahir, A. M., Grahame, R., & Jacob, G. (2003). Dysautonomia in the joint hypermobility syndrome. The American Journal of Medicine. 115(1), 33-40. PubMed5. Gentile, S., Rainero, I., Luda, E., & Pinessi, L. (2001). Autonomic dysfunction associated with multiple pelvic ganglioneuromas. Acta Neurologica Scandinavica, 104(1), 54-56. PMID: 11442444 [PubMed - indexed for MEDLINE]6. Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.7. Grubb, B. P. (2002, October). The heterogeneity of symptoms related to dysautonomia. Symposium conducted at the meeting of the National Dysautonomia Research Foundation Northwest Ohio Support Group. Toledo, Ohio.8. Grubb, B. P., & Karas, B. (1999). Clinical disorders of the autonomic nervous system associated with orthostatic intolerance. Pacing and Clinical Electrophysiology, 22, 798-810. Full text: http://www.ndrf.org/disorders.PDF9. Hartleb, M., Rudzki, K., Karpel, E., Becker, A., Waluga, M., Boldys, H., Nowak, A., & Nowak, S. (1979). Cardiovascular status after postural change in compensated cirrhosis: an argument for vasodilatory concept. Liver, 17(1), 1-6. PMID: 9062872 [PubMed - indexed for MEDLINE]10. Healthline Scripts: Cardiac Atrophy. (1998). National Space Biomedical Research Institute. 11. Itoh, Y., Oishi, T., Ohnishi, A., Murai, Y., & Imawatari, R. (1993). [Acute cerebellar ataxia with sympathotonic orthostatic hypotension following Epstein-Barr virus infection--a case report]. Rinsho Shinkeigaku, 33, 503-506. PMID: 8395987 [PubMed - indexed for MEDLINE]12. Jacob, G., & Biaggioni I. (1999). Idiopathic orthostatic intolerance and postural tachycardia syndromes. The American Journal of the Medical Sciences, 317, 88-101. PMID: 10037112 [PubMed - indexed for MEDLINE]13. Llamas, E. G., Garcia, R. G., Gaos, C. Jr., Jimenez, J. L., Villavicencio, R., Cueto, L., & Arriaga, G. J. (1985). Cardiac autonomic neauropathy in the diabetic patient. Archivos del Instituto de Cardiologia de Mexico, 55, 247-256. Spanish. PMID: 2932078 [PubMed - indexed for MEDLINE]14. Low, P. A., Schondorf, R. (1996). Postural tachycardia syndrome. In D. Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 279). San Diego, CA: Academic Press.15. Mitka, M. (2002). Returning astronaut study helps some reeling patients. The Journal of the American Medical Association, 287, 837.16. Nand, N., Mohan R., Khosla, S. N., & Kumar P. (1989). Autonomic function tests in cases of chronic severe anaemia. Journal of the Association of Physicians of India, 37, 508-510. PMID: 2621185 [PubMed - indexed for MEDLINE]17. NINDS Syringomyelia Information Page. (2001). National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/health_and_medica...yelia_short.htm18. Rosner, M. J., D'Amour, P., & Rowe, P. C. (1999, September). Neurally Mediated Hypotension: its Surgical Evaluation, Management and Early Outcome as Part of the Fibromyalgia?Chronic Fatigue Syndrome. National Fibromyalgia Research Association's Subgroups in Fibromyalgia Symposium. Portland, Oregon. http://www.nfra.net/SubRosner2.htm19. Rowe, P. C., Barron, D. F., Calkins, H., Maumenee, I. H., Tong, P. Y., & Geraghty, M. T. (1999). Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome. Journal of Pediatrics, 135, 494-499. PMID: 10518084 [PubMed - indexed for MEDLINE]20. Shen, W. K. (2002). Modification and ablation for inappropriate sinus tachycardia: current status. Cardiac Electrophysiology Review. 6(4), 349-355. PubMed21. Shen, W. K., Low, P.A., Jahangir, A., Munger, T. M., Friedman, P. A., Osborn, M. J., Stanton, M. S., Packer, D. L., Rea, R. F., Hammill, S. C. (2001). Is sinus node modification appropriate for inappropriate sinus tachycardia with features of postural orthostatic tachycardia syndrome? Pacing & Clinical Electrophysiology, 24(2), 217-230. PubMed22. Singer, W., Shen, W. K., Opfer-Gehrking, T.L., McPhee, B. R., Hilz, M. J., & Low, P.A. (2002). Evidence of an intrinsic sinus node abnormality in patients with postural tachycardia syndrome. Mayo Clinic Proceedings, 77, 246-252. Full text: http://www.mayoclinicproceedings.com/inside.asp?AID=54&UID=23. Singer, W., Shen, W. K., Opfer-Gehrking, T.L., McPhee, B. R., Hilz, M. J., & Low, P.A. (2003). Heart rate-dependent electrocardiogram abnormalities in patients with postural tachycardia syndrome. Autononomic Neuroscience, 31, 103(1-2), 106-113. PMID: 12531404 [PubMed - in process]24. Singh, N. K., Jaiswal, A. K., Misra, S., & Srivastava, P. K. (1987). Assessment of autonomic function in Guillain-Barre syndrome and its prognostic implications. Acta Neurologica Scandinavica, 75, 101-105. PMID: 3577674 [PubMed -indexed for MEDLINE]25. Steinmann, B., Royce, P. M., Superti-Furga, A. (1993). The Ehlers-Danlos syndrome. In: P. M. Royce & B. Steinman (Eds), Connective tissue and its heritable disorders (pp. 351-408).New York: Wiley-Liss, Inc.26. Stewart, P. M., & Hensley, W. J. (1981). An accute attack of variegate porphyria complicated by severe autonomic neuropathy. Australian and New Zealand Journal of Medicine, 11(1), 82-83. PMID: 6941785 [PubMed - indexed for MEDLINE]27. Takahashi, Y., Ohta, S., Sano, A., Kuroda, Y., Kaji, Y., Matusuki, M., & Matsuo, M. (2000). Does severe nutcracker phenomenon cause pediatric chronic fatigue? Clinical Nephrology, 53, 174-181. PMID: 10749295 [PubMed - indexed for MEDLINE]28. Takahashi, Y., Sano, A., Matsuo, M. (2000). An effective "transluminal balloon angioplasty" therapy for pediatric chronic fatigue syndrome with nutcracker phenomenon. Clinical Nephrology, 53, 77-78. PMID: 10661488 [PubMed - indexed for MEDLINE]29. Wenstrup, R. J., & Hoechstetter, L. B. (2001). The Ehlers-Danlos syndromes. In S. B. Cassidy & J. E. Allanson (Eds.) , Management of genetic syndromes (pp. 131-149). New York: Wiley-Liss, Inc.30. Vernino, S., Low, P. A., Fealey, R. D., Stewart, J. D., Farrugia, G., & Lennon, V. A. (2000). Autoantibodies to Ganglionic Acetylcholine Receptors in Autoimmune Autonomic Neuropathies. The New England Journal of Medicine, 343, 847-855. http://content.nejm.org/cgi/content/abstract/343/12/847and detections1. Braune, S., Wrocklage, C., Schulte-Monting, J., Schnitzer, R., & Lucking, C. H. (1999). Diagnosis of tachycardia syndromes associated with orthostatic symptoms. Clinical Autonomic Research, 9(2), 97-101 PMID: 10225614 [PubMed - indexed for MEDLINE]2. El-Sayed, H., & Hainsworth, R. (1996). Salt supplement increases plasma volume and orthostatic tolerance in patients with unexplained syncope. Heart, 75, 134-140. PMID: 8673750 [PubMed - indexed for MEDLINE]3. Engstrom, J. W., & Aminoff, M. J. (1997). Evaluation and treatment of orthostatic hypotension. American Family of Physicians, 56(5). http://www.aafp.org/afp/971001ap/engstrm.html4. Fealey, R. (1996). Disorders of sweating. In D. Robertson, P. A. Low, & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 293-299). San Diego, CA: Academic Press.5. Grubb, B. P., & McMann, M. C. (2001). The Fainting Phenomenon: Understanding why people faint and what can be done about it. New York: Futura Publishing Company.6. Khurana, R.K., & Setty, A. (1996). The value of the isometric hand-grip test--studies in various autonomic disorders. Clinical Autonomic Research, 6, 211-218. PMID: 8902317 [PubMed - indexed for MEDLINE]7. Low, P. A. (1993). Postural Orthostatic Tachycardia Syndrome. Department of neurology, Mayo Clinic.8. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.9. Robertson, D. (1996). Clinical assessment of autonomic failure. In D. Robertson, P. A. Low, & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 111-115). San Diego, CA: Academic Press.10. Sandroni, P. (1998, November/December). Testing the autonomic nervous system. In C. B. Berde, & M. C. Rowbotham (Eds.) International Association for the Study of Pain: Technical Corner From IASP Newsletter. http://www.iasp-pain.org/TC98NovDec.html11. Sandroni, P., Novak, V., Opfer-Gehrking, T. L., Huck, C. A., & Low, P. A. (2000). Mechanisms of blood pressure alterations in response to the Valsalva maneuver in postural tachycardia syndrome. Clinical Autonomic Research, 10(1), 1-5. PMID: 10750636 [PubMed - indexed for MEDLINE]12. Stewart, J. M. Heart rate and blood pressure variability. Retrieved March 23, 2002, from Center for Pediatric Hypotension. http://www.nymc.edu/fhp/centers/syncope/he...20variability%2 C%20blood%20pressure%20variability%20and%20the%20baroreflex.htmand mechanisms1. Bou-Holaigah, I., Rowe, P. C., Kan, J., & Calkins, H. (1995). The relationship between neurally mediated hypotension and the chronic fatigue syndrome. Journal of the American Medical Association, 27, 961-967. PMID: 7674527 [PubMed - indexed for MEDLINE]2. Bush, V. E., Wight, V. L., Brown, C. M., & Hainsworth, R. (2000). Vascular responses to orthostatic stress in patients with postural tachycardia syndrome (POTS), in patients with low orthostatic tolerance, and in asymptomatic controls. Clinical Autonomic Research 10, 279-284. PMID: 11198483 [PubMed - indexed for MEDLINE]3. Coghlan, H. C. (2002, July). Orthostatic Intolerance. National Dysautonomia Research Foundation Patient Conference. Washington, DC.4. Fredman, C. S., Biermann, K. M., Patel, V., Uppstrom, E. L., & Auer, A. I. (1995). Transcranial Doppler Ultrasonography during Head-Upright Tilt-Table Testing. Annals of Internal Medicine 123, 848-849. http://www.acponline.org/journals/annals/01dec95/doppler.htm5. Gordon, V. M., Opfer-Gehrking, T. L., Novak, V., & Low, P. A. (2000). Hemodynamic and symptomatic effects of acute interventions on tilt in patients with postural tachycardia syndrome. Clinical Autonomic Research, 10(1), 29-33. PMID: 10750641 [PubMed - indexed for MEDLINE]6. Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.7. Grubb, B. P., & Karas, B. (1999) Clinical disorders of the autonomic nervous system associated with orthostatic intolerance. Pacing and Clinical Electrophysiology, 22, 798-810. Full text: http://www.ndrf.org/disorders.PDF8. Hermosillo, A. G., Jauregui-Renaud, K., Kostine, A., Marquez, M. F., Lara, J. L., Cardenas, M. (2002). Comparative study of cerebral blood flow between postural tachycardia and neurocardiogenic syncope, during head-up tilt test. Europace, 4, 369-74. PMID: 12408256 [PubMed - in process]9. Jacob, G., & Biaggioni I. (1999). Idiopathic orthostatic intolerance and postural tachycardia syndromes. The American Journal of the Medical Sciences, 317, 88-101. PMID: 10037112 [PubMed - indexed for MEDLINE]10. Jacob, G., Robertson, D., Mosqueda-Garcia, R., Ertl, A. C., Robertson, R. M., Biaggioni, I. (1997). Hypovolemia in syncope and orthostatic intolerance: role of the renin-angiotensin system. American Journal of Medicine, 103(2), 128-133. PMID: 9274896 [PubMed - indexed for MEDLINE]11. Kuchel, O., Buu, N. T., Hamet, P., Larochelle, P., Gutkowska, J., Schiffrin, E. L., Bourque, M., & Genest, J. (1985). Orthostatic hypotension: a posture-induced hyperdopaminergic state. The American Journal of the Medical Sciences, 289, 3-11. PMID: 3881951 [PubMed - indexed for MEDLINE]12. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.13. Low, P. A., Schondorf, R., Novak, V., Sandroni, P., Opfer-Gehrking, T. L., & Novak, P. (1997). Postural Tachycardia Syndrome. In P.A. Low (Ed.), Clinical Autonomic Disorders (pp. 681-697). Philadelphia: Lippincott-Raven Publishers.14. Novak, V., Novak, P., Opfer-Gehrking, T. L., O'Brien, P. C., & Low P. A. (1998). Clinical and laboratory indices that enhance the diagnosis of postural tachycardia syndrome. Mayo Clinic Proceedings, 73, 1141-50. PMID: 9868411 [PubMed - indexed for MEDLINE]15. Robertson, D. (2000, July). General description of the autonomic nervous system and orthostatic intolerance overview. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.16. Shannon, J. R., Flattem, N. L., Jordan, J., Jacob, G., Black, B. K., Biaggioni, I., Blakely, R. D., Robertson, D. (2000). Orthostatic intolerance and tachycardia associated with norepinephrine-transporter deficiency. New England Journal of Medicine, 24, 541-9. PMID: 10684912 [PubMed - indexed for MEDLINE]17. Stewart, J. M. (2000, July). Pediatric and adolescent orthostatic intolerance and CFIDS. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.18. Stewart, J. M., & Erickson, L.C., (2002). Orthostatic intolerance: an overview. In Alejos, J. C., Konop, R., Chin, A. J., Herzberg, G., Neish, S. (Eds.). emedicine Journal, 3, (1). http://www.emedicine.com/ped/topic2860.htm19. Stewart, J. M., & Weldon, A. (2001). Reflex vascular defects in the orthostatic tachycardia syndrome of adolescents. Journal of Applied Physiology, 90, 2025-2032. Full text: http://jap.physiology.org/cgi/content/full/90/6/202520. Streeten, D. H. (1999). Orthostatic intolerance. A historical introduction to the pathophysiological mechanisms. The American Journal of the Medical Sciences, 317, 78-87. PMID: 10037111 [PubMed - indexed for MEDLINE]21. Streeten, D. H., & Anderson, G. H. (1992). Delayed orthostatic intolerance. Archives of Internal Medicine, 152, 1066-72 PMID: 1580710 [PubMed - indexed for MEDLINE]Just a few for your insurance company Nina Quote Link to comment Share on other sites More sharing options...
LisaColumbus Posted January 23, 2005 Author Report Share Posted January 23, 2005 Wow Nina- Thank you! What a wealth of information!Steph thank you so much for your help too! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 24, 2005 Report Share Posted January 24, 2005 You are welcome! Here, also, are all my personal links from medical resources on the web. You may have to scout around for more info than what I've given you, but NIH and NINDS are some of the most respected sources, along with PubMed and MedLine. Some may not be relevant to you...others might be useful.http://www.ndrf.org/NDRFHandbook.htmhttp://stroke.ahajournals.org/cgi/content/...lcode=strokeahahttp://clinicaltrials.gov/ct/show/NCT00069693?order=4http://clinicaltrials.gov/search/term=Dysautonomiahttp://ameswalker.com/amwalsigcol.htmlhttp://cpmcnet.columbia.edu/dept/syncope/tiltfaq.htmlhttp://www.niaid.nih.gov/factsheets/masto.htmhttp://www.aafp.org/afp/20031215/2393.htmlhttp://www.ninds.nih.gov/health_and_medica...rthosta_doc.htmhttp://www.ninds.nih.gov/health_and_medica...dysauto_doc.htmhttp://www.ninds.nih.gov/news_and_events/h...onomia_2002.htmhttp://www.mc.vanderbilt.edu/gcrc/adc/oi.htmlhttp://www.merck.com/mrkshared/mmanual_hom...h023/ch023a.jsphttp://www.dizziness-and-balance.com/disor...rthostatic.htmlhttp://www.gpda.net/page12.htmlhttp://home.att.net/%7Epotsweb/POTS.htmlhttp://www.orthop.washington.edu/arthritis...ehlersdanlos/01http://www.niaid.nih.gov/default.htmhttp://clinicaltrials.gov/ct/guihttp://www.ehlers-danlos.org/http://www.ahmf.org/01burnet.htmlhttp://www.motilitysociety.org/http://www.top5plus5.com/Pancreas/Sphincte...Dysfunction.htmhttp://www2.rpa.net/~lrandall/webdoc3.htm#locatehttp://www.co-cure.org/Good-Doc.htmhttp://www.coolsport.net/index2.htmlhttp://www.neurology.org/cgi/content/abstract/43/1/132http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=12734133http://www.mc.vanderbilt.edu/gcrc/adc/autonomic.htmlhttp://www.medhelp.org/perl6/neuro/archive/12877.htmlhttp://www.mssm.edu/neurology/autodis/disorders/paf/http://www.ncbi.nlm.nih.gov/entrez/query.f...6&dopt=Abstracthttp://www.emedicine.com/ped/topic2419.htm...n~differentialshttp://ednf.org/nosology.htmlhttp://www.mychronicillness.com/invisibleillness/home.htmhttp://www.nfra.net/SpinSten.htmhttp://www.childrensheartinstitute.org/http://www.ninds.nih.gov/health_and_medica...ia_syndrome.htmhttp://webschoolsolutions.com/patts/systems/nervous.htmhttp://www.myida.org/http://www.mychronicillness.com/invisibleillness/home.htmhttp://www.emedicine.com/ent/topic332.htmhttp://www.spinalinjury.net/html/_anatomy_...al_cord_co.htmlhttp://www.neuro.wustl.edu/neuromuscular/s.../systemic2.htmlhttp://www.merck.com/mrkshared/mmanual/sec...ter182/182b.jsphttp://www.nfra.net/SpinSten.htmhttp://www.nfra.net/Stenos2.htmhttp://www.nfra.net/Stenos3.htmhttp://neuro-mancer.mgh.harvard.edu/cgi-bi...1000&LastLogin=Happy surfing! Nina Quote Link to comment Share on other sites More sharing options...
kristinp29 Posted January 24, 2005 Report Share Posted January 24, 2005 Just a question...does anyone really know why???? If you do, please enlighten me!I just know what POTS and dyautonomia is and that it can make you feel all of these things!!Love,Kristin Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 24, 2005 Report Share Posted January 24, 2005 Kristin, for some people, yes, they do understand "why". Most, however, don't know why--doctors are still doing research on this. For the current understanding of the known reasons "why", see the DINET site sections listed under "causes" and "mecanisms".http://www.dinet.orgNina Quote Link to comment Share on other sites More sharing options...
opus88 Posted January 24, 2005 Report Share Posted January 24, 2005 There was also a pretty good layman's explanation for some of this. Not too long ago a post mentioned a link to Chris Caulder's website - you might search for this. I found it very helpful. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 24, 2005 Report Share Posted January 24, 2005 Chris's site is in my links above, but here it is by itself to make things easier:http://home.att.net/%7Epotsweb/POTS.htmlNina Quote Link to comment Share on other sites More sharing options...
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