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LisaColumbus
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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

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Lisa, please see the primary dinet site at

http://www.dinet.org

you can then print the citations from each section on

overview

1. 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 causes

1. Autonomic Dysfunction. (2000). The WorldWide Anaesthetist.

http://anaesthetist.com/anaes/patient/ans.htm

2. 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/37/6/1357

4. 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. PubMed

5. 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.PDF

9. 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.htm

18. 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.htm

19. 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. PubMed

21. 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. PubMed

22. 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/343/12/847

and detection

s

1. 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.html

4. 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.html

11. 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.htm

and mechanisms

1. 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.htm

5. 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.PDF

8. 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.htm

19. 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/90/6/2025

20. 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 :D Nina

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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.htm

http://stroke.ahajournals.org/cgi/content/...lcode=strokeaha

http://clinicaltrials.gov/ct/show/NCT00069693?order=4

http://clinicaltrials.gov/search/term=Dysautonomia

http://ameswalker.com/amwalsigcol.html

http://cpmcnet.columbia.edu/dept/syncope/tiltfaq.html

http://www.niaid.nih.gov/factsheets/masto.htm

http://www.aafp.org/afp/20031215/2393.html

http://www.ninds.nih.gov/health_and_medica...rthosta_doc.htm

http://www.ninds.nih.gov/health_and_medica...dysauto_doc.htm

http://www.ninds.nih.gov/news_and_events/h...onomia_2002.htm

http://www.mc.vanderbilt.edu/gcrc/adc/oi.html

http://www.merck.com/mrkshared/mmanual_hom...h023/ch023a.jsp

http://www.dizziness-and-balance.com/disor...rthostatic.html

http://www.gpda.net/page12.html

http://home.att.net/%7Epotsweb/POTS.html

http://www.orthop.washington.edu/arthritis...ehlersdanlos/01

http://www.niaid.nih.gov/default.htm

http://clinicaltrials.gov/ct/gui

http://www.ehlers-danlos.org/

http://www.ahmf.org/01burnet.html

http://www.motilitysociety.org/

http://www.top5plus5.com/Pancreas/Sphincte...Dysfunction.htm

http://www2.rpa.net/~lrandall/webdoc3.htm#locate

http://www.co-cure.org/Good-Doc.htm

http://www.coolsport.net/index2.html

http://www.neurology.org/cgi/content/abstract/43/1/132

http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=12734133

http://www.mc.vanderbilt.edu/gcrc/adc/autonomic.html

http://www.medhelp.org/perl6/neuro/archive/12877.html

http://www.mssm.edu/neurology/autodis/disorders/paf/

http://www.ncbi.nlm.nih.gov/entrez/query.f...6&dopt=Abstract

http://www.emedicine.com/ped/topic2419.htm...n~differentials

http://ednf.org/nosology.html

http://www.mychronicillness.com/invisibleillness/home.htm

http://www.nfra.net/SpinSten.htm

http://www.childrensheartinstitute.org/

http://www.ninds.nih.gov/health_and_medica...ia_syndrome.htm

http://webschoolsolutions.com/patts/systems/nervous.htm

http://www.myida.org/

http://www.mychronicillness.com/invisibleillness/home.htm

http://www.emedicine.com/ent/topic332.htm

http://www.spinalinjury.net/html/_anatomy_...al_cord_co.html

http://www.neuro.wustl.edu/neuromuscular/s.../systemic2.html

http://www.merck.com/mrkshared/mmanual/sec...ter182/182b.jsp

http://www.nfra.net/SpinSten.htm

http://www.nfra.net/Stenos2.htm

http://www.nfra.net/Stenos3.htm

http://neuro-mancer.mgh.harvard.edu/cgi-bi...1000&LastLogin=

Happy surfing! Nina :D

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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

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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.org

Nina

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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.

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Chris's site is in my links above, but here it is by itself to make things easier:

http://home.att.net/%7Epotsweb/POTS.html

Nina

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