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  1. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12102462&dopt=Abstract</p>
  2. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=</p>
  3. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16698864&query_hl=1&itool=pubmed_docsum</p>
  4. <p>http://journals.lww.com/anesthesiology/pages/articleviewer.aspx?year=2000&issue=08000&article=00041&type=fulltext</p>
  5. <p>http://www.anaesthetist.com/anaes/patient/ans.htm</p>
  6. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003
  7. Dysautonomia means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies. Diagnosis frequently requires a specialist familiar with autonomic dysfunction and the various disorders that result. It is common for diagnosis to take a longer than many other disorders, however with the proper diagnostic testing the type of dysautonomia can be identified and effective treatment prescribed. DINET provides information , personal stories and articles written by patients about the types of dysautonomia, treatment and living with these chronic illnesses. This site focuses on the following types of dysautonomia; please note, these are not the only types or subtypes of the disorders described. Please explore the different categories under Information Resources to find out more about dysautonomia disorders. Postural Orthostatic Tachycardia Syndrome Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand. Our web site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links and research. There are also sections with information on what may help or hinder POTS patients. To read more about postural orthostatic tachycardia syndrome, explore the POTS category in our Information Resource section. Neurocardiogenic Syncope (NCS) Sometimes referred to as neurally mediated syncope or vasovagal syncope, this disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes. Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. A page full of links to other neurocardiogenic syncope resources on the Internet is included as well. To read more about neurocardiogenic syncope, explore the NCS category in the Information Resources section. Pure Autonomic Failure (PAF) A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat. Our web site provides a page full of links to pure autonomic failure resources on the Internet. Multiple System Atrophy/Shy-Drager Syndrome (MSA) A degenerative disease of the central nervous system, MSA usually becomes apparent when one is in their fifties or sixties. Genitourinary dysfunction, impotence, headache, neck pain, dimming of vision, frequent yawning, orthostatic hypotension, gait disorder, sleep disorders and hoarseness may occur with multiple system atrophy (Polinsky, 1996). Loss of sweating, rectal incontinence, iris atrophy, external ocular palsies (paralysis of eye muscles), rigidity, tremor, fasciculations and wasting of distal muscles may also occur (Rehman, 2001). Loss of balance, difficulty moving, loss of fine motor skills, muscle aches and pains, changes (decline) in facial expressions, difficulty chewing or swallowing and a mild decline in intellectual function are among other symptoms patients may experience. (MEDLINEPlus, 2003, Multiple System Atrophy). MSA is a very serious form of dysautonomia that can be fatal. Our website provides a page full of links to multiple system atrophy resources on the Internet. References 1. Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898. 2. MEDLINEPlus Heath Information. (2003). Multiple System Atrophy. Retrieved September 8, 2003 from: http://www.nlm.nih.gov/medlineplus/ency/article/000757.htm 3. Polinsky, R. J. (1996). Multiple system atrophy and Shy-Drager syndrome. In Robertson, P. A. Low & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 222). San Diego, CA: Academic Press. 4. Rehman H. U. (2001). Multiple system atrophy. Postgraduate Medical Journal. 77, (908), 379-382. 5. Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.
  8. Autonomic nerve disorders (dysautonomia) refer to disorders of the autonomic nervous system (ANS) function. Dysautonomia is a general term used to describe a breakdown or abnormal function of the ANS. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide-ranging and can include problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, and cognitive impairment. (1. Mayo Clinic, Autonomic Nerve Disorders 2019) Some forms of dysautonomia include; Postural Orthostatic Tachycardia Syndrome (POTS), Orthostatic Hypotension (OH), Orthostatic Intolerance (OI), Neurocarciogenic Syncope (NCS), Pure Autonomic Failure (PAF), Multiple System Atrophy/Shy-Drager syndrome (MSA). There are many advanced tests used for further diagnosis once some form of dysautonomia is detected. The most common tests used are as follows. The tilt table test is often the standard method used for detecting types of dysautonomia. A patient is strapped to a mechanical table, which will tilt them upright at an angle of at least 60 degrees. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of Autonomic Dysfunction is 40 minutes or until they faint, at which point the test is concluded (Carew, Cooke, O'Connor, Donnelly, Costelloe, Sheehy & Lyons, 2009). Some patients are given a drug called isoproterenol through an intravenous line during this test. Isoproterenol is used to test the sensitivity of beta-receptors. People who have POTS with beta-receptor supersensitivity and a hyperadrenergic state will generally have an exacerbation of symptoms due to this drug. Other drugs that are sometimes used in place of isoproterenol include nitroglycerin, edrophonium, adenosine triphosphate, ephedrine and nitroprusside (Grubb & McMann, 2001). The tilt table test may be combined with transcranial doppler ultrasonography. Transcranial doppler ultrasonography is useful in detecting a reduction in cerebral blood flow (Fredman, Biermann, Patel, Uppstrom & Auer, 1995). A number of patients with orthostatic issues will have a decrease in blood flow to the brain upon standing (Low, 2000). This can occur even if the patient does not become hypotensive (Low, 2000). Bowel motility studies are useful in ascertaining the degree of gastrointestinal involvement present (Grubb, Kanjwal & Kosinski, 2006). A catecholamine test is sometimes given to patients suspected of having chemical abnormalities. Testing one's levels of catecholamines and their metabolites is also useful in detecting certain tumors, such as pheochromocytoma. Some patients will have abnormal catecholamine levels, particularly norepinephrine levels. Norepinephrine is the main chemical messenger of the sympathetic nervous system, and is often elevated in certain types of dysautonomia patients. A physician can determine one's total catecholamine levels through analysis of their blood or urine. The blood test is quite simple. The patient will have to lie quietly for a period of time (usually around 30 minutes) before their blood is drawn. Some doctors believe a more accurate reading is gained if an intravenous line is placed in the patient's arm before the resting period. This is because the fear and pain associated with needles may induce a rise in catecholamines that could obscure results. Other doctors will use the 24-hour urine catch method to determine catecholamine levels. The patient is given a container to collect their total urine volume over a 24-hour period. The container is then returned to the physician and catecholamine levels are assayed. The cold pressor test is used to activate the blood pressure control system. The patient places their hand in ice water during this test. The physician will monitor blood pressure changes. This test can be used to localize a sympathetic lesion in the afferent or efferent limb of the baroreceptor reflex arc (Engstrom & Aminoff, 1997). Deep breathing/Paced respirations are tests that evaluate autonomic function by measuring heart rate responses to controlled breathing. Electromyography (EMG) is sometimes used to test the electrical activity of nerves and muscles. A needle electrode(s) is inserted through the skin into the muscle. The measured muscle response to nervous stimulation can detect nerve or muscle disorders. A nerve conduction study may be given concurrently with electromyography. During this test, muscles and nerves are stimulated with small bursts of electricity to determine if they are functioning in a normal manner. The Hand-grip test is a simple and non-invasive test of sympathetic function. Some physicians feel its sensitivity and specificity compare favorably with the tilt table test (Khurana & Setty, 1996). During this test, a patient squeezes a hand-grip until their arm is fatigued. Those with autonomic dysfunction may have an excessive diastolic blood pressure response to this test. Magnetic resonance imaging (MRI)/(MRA) can be used to diagnose some conditions thought to be associated with autonomic dysfunction, such as tumors, Chiari, cervical stenosis or the nutcracker phenomenon. This test encompasses a powerful magnet, low-intensity radio waves, and computer technology. The patient lies still inside the magnet. The magnetic field and different radio frequencies allow a specialized computer to generate detailed images of the inside of the body. The Stand-Up MRI may lead to interesting findings in POTS patients. Microneurography is sometimes used to record traffic from the peripheral nerves. A small needle is placed into a nerve in the leg. Physicians can then measure nerve signals traveling from the brain to the blood vessels. Some POTS patients have nerve damage in their legs (Low, 2000).. Sweat tests such as the thermoregulatory, resting sweat output and the quantitative sudomotor axon reflex are sometimes given to patients to determine if they are sweating appropriately. Many people with forms of dysautonomia will have impaired sweating abilities. Some patients report inappropriate sweating, including night sweats. During the thermoregulatory sweat test, the patient wears a disposable bathing suit and an orange powder is applied to the skin. The patient is then placed in a hot environment to induce sweating. The orange powder will turn purple where the patient sweats. In this way, physicians can determine if the patient has abnormal sweating patterns. A small battery operated current may be used to stimulate the sweat glands directly during the resting sweat output test. The quantitative sudomotor axon reflex test (QSART) is used to determine sweat volume and latency of response. It can also be used to test for postganglionic lesions (Fealey, 1996, p. 297). A reduced or absent sweat response indicates postganglionic sympathetic sudomotor failure. Used in conjunction with the thermoregulatory sweat test, QSART can differentiate a pre- from the postganglionic lesion (Low, 2003, 407-421). Some patients may be given a 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). One study performed by researchers at the Mayo Clinic showed that 28.9% of POTS patients excreted less than 100 mEq in 24 hours and 66.4% excreted less than 150 mEq in 24 hours. These researchers concluded that an important first step in the assessment and treatment of POTS is to determine the patient's volume status and institute salt and fluid replacement in those with hypovolemia (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). A study of neurocardiogenic patients noted that those with a urinary sodium excretion <170 mmol/24 hrs. were more likely to have reduced plasma volume (El-Sayed & Hainsworth, 1996). These patients responded well to salt loading. A patient may also be given a test to determine total red cell mass and plasma volume. Hypovolemia is sometimes found in conjunction with POTS. Plasma volume may be reduced or red cell mass may be reduced in the POTS patient (Low, 1993). Another test that is sometimes used to determine autonomic dysfunction is the Valsalva maneuver. This is a test of baroreflex responsiveness. A physician will have the patient blow into a tube while observing heart rate and blood pressure changes. Impaired baroreflex appears to be characteristic of moderate to severe forms of dysautonomia (Stewart, 2002). Patients may have an excessive blood pressure increment after cessation of the maneuver that is sometimes associated with headache (Sandroni, Novak, Opfer-Gehrking, Huck & Low, 2000). Some researchers report normal heart rate responses during the maneuver and conclude that the assessment of heart rate responses during this test does not contribute to the diagnosis of POTS (Braune, Wrocklage, Schulte-Monting, Schnitzer & Lucking, 1999). A Patient may be given various tests to determine how dysautonomia is affecting their heart. Sinus tachycardia commonly occurs in those with dysautonomia. A patient may be asked to wear a Holter monitor to determine if their heart is functioning correctly. This device allows physicians to record the heart's activity over an extended period of time (usually 24 hours). Electrodes are placed at various locations on the patient's chest. These electrodes are attached to a small portable recorder. A patient may be asked to keep a written journal of any symptoms they experience while wearing the Holter monitor. Irregular heart rhythms are recorded and then evaluated by a physician. Endless-loop recorders or event recorders are sometimes used instead of Holter monitors. These recorders are smaller and can be worn for months at a time. Patients will press a button after experiencing symptoms such as tachycardia or fainting. An ECG of the event will be recorded and transmitted via telephone for a physician to access. A stress test can be used to determine how exercise might affect the dysautonomia patient. The patient walks on a treadmill until a target heart rate is reached. The test is ceased if the patient becomes exhausted or develops complications. The heart's electrical activity is recorded while the patient exercises. Sometimes an echocardiogram will be performed along with the stress test. An echocardiogram is an ultrasound of the heart. This test helps physicians identify abnormalities in the heart's structure and function. The above are only some of the tests that may be given to a patient suspected of having autonomic dysregulation. It is important for patients to ask their physician if they should discontinue their medication before taking specific tests. Some medications that have been reported to significantly affect autonomic testing results include chlorpromazine, thioridazine, tricyclic antidepressants, bupropion, mirtazapine, venlafaxine, clonidine, alpha blockers, beta blockers, calcium channel blockers, opiates and topical capsaicin (Sandroni, 1998). A patient taking medication to lessen symptoms will present with decreased symptoms upon testing. A patient should always consult their physician before discontinuing any medication. Resources 1. Mayo Clinic, Autonomic Nerve Disorders, Full Text Link 2. 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] 3. Carew, S., Cooke, J., O'Connor, M., Donnelly, T., Costelloe, A., Sheehy, C., & Lyons, D. (2009). What is the optimal duration of tilt testing for the assessment of patients with suspected postural tachycardia syndrome? Europace. 11(5), 635-637. PubMed 4. El-Sayed, H., & Hainsworth, R. (1996). Salt supplement increases plasma volume and orthostatic tolerance in patients with unexplained syncope. Heart, 75, 134-140. Full Text 5. Engstrom, J. W., & Aminoff, M. J. (1997). Evaluation and treatment of orthostatic hypotension. American Family of Physicians, 56(5). PubMed 6. 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. 7. Grubb B. P., Kanjwal, Y., & Kosinski, D. J. (2006). The postural tachycardia syndrome: A concise guide to diagnosis and management. J Cardiovasc Electrophysiol., 17, 108-112. 8. 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. 9. 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] 10. Low, P. A. (1993). Postural Orthostatic Tachycardia Syndrome. Department of neurology, Mayo Clinic. 11. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota. 12. Low, P. A. (2003). Seminars in neurology. In K. L. Ross and R. Freeman (Eds.), Testing the Autonomic Nervous System (pp. 407-421). New York, NY: Thieme Medical Publishers, Inc. 13. 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. 14. 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 15. 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. 16. 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/heart%20rate%20variability%2 C%20blood%20pressure%20variability%20and%20the%20baroreflex.htm 17. Thieben, M. J., Sandroni, P., Sletten, D. N., Benrud-Larson, L. M., Fealey, R. D., Vernino, S., Lennon, V. A., Shen, W. K., & Low, P. A., (2007). Postural orthostatic tachycardia syndrome: the Mayo Clinic experience. Mayo Clin. Proc. 82, (3), 308-313.
  9. edriscoll

    EDS Overview

    What is Ehler's Danlos Syndrome? EDS is a connective tissue disorder caused by various defects in the synthesis of collagen. Along with Hypermobility Spectrum Disorder (HSD), they are a class of genetic disorders, present at birth but unrecognized for years. There are 13 different types of EDS. Studies have found that EDS is associated with dysautonomia, usually in the form of POTS and OI. Recent findings report 80% of Hypermobility EDS patients have POTS and 33% OI. In addition to the symptoms associated with dysautonomia, some common symptoms of EDS are joint laxity, soft skin, easy bruising, widespread manifestations in the tissue, vascular system and organs. Strategic, customized exercise plans, a skilled medical team, and protection of joints and skin, and pain management are the essentials of a good treatment plan and management of the disorder. To learn more about the connection between EDS and POTS, visit our page "What causes POTS". To learn more about Ehler's Danlos Syndrome, visit the Ehler's Danlos Society at https://ehlers-danlos.com For information about POTS symptoms and treatment, visit https://www.dinet.org/content/information-resources/pots/ Source: Ehler's Danlos Society
  10. 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. Bibliography [1] National Institute of Mental Health, "Health Information: Statistics," November 2017. [Online]. Available: https://www.nimh.nih.gov/health/statistics/eating-disorders.shtml#part_155058. [2] 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. [3] 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. [4] 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. [5] B. P. Grubb, "Postural Tachycardia Syndrome," Circulation, vol. 117, no. 21, pp. 2814-2817, May 2008. [6] M. A. Spaulding-Barclay, J. Stern and P. S. Mehler, "Cardiac changes in anorexia nervosa," Cardiology in the Young, 2016. [7] 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. [8] J. M. Stewart, "Common Syndromes of Orthostatic Intolerance," Pediatrics, vol. 131, no. 5, pp. 968-980, May 2013. [9] NINDS, "Postural Tachycardia Syndrome Information Page," 18 June 2018. [Online]. Available: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page. [10] 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. [11] 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. [12] 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 Return to Table of Contents
  11. 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 Return to Table of Contents
  12. 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. Return to Table of Contents
  13. Age specific tools for managing chronic illness I’m no expert in the field of chronic illness. Nor am I any type of medical professional. However, I AM an older adult with eighteen years of experience in dealing firsthand with a chronic illness (dysautonomia). I’ve been asked to share my experiences, observations, and opinions. I’m happy to do so in case any of it may help someone else. In my opinion, when it comes to having a chronic illness it matters where you are located in your Life Cycle. By that, I mean that your current place in your “Life Timeline” (childhood, young adulthood, middle age, older age) is a factor that impacts how you experience and cope with your chronic illness. Each phase we go through in Life can provide us with age-specific tools that may serve us in good stead during a major upheaval. I base this personal opinion on my own first-hand experiences as well as upon my observations of younger people I personally know who have a chronic illness. There are probably advantages (and disadvantages) to being in each age group when it comes to experiencing a chronic illness. I am, of course, more familiar with the advantages of being middle-aged and older-aged during a chronic illness because I didn’t begin experiencing mine until I was 40 years old. It didn’t severely disable me until I was 56 years old. I have thus lived the experience of being challenged by chronic illness later in life. One observation I would make is that by age 40 I had experienced many of Life’s ups and downs. We all experience at least some of them: Love, rejection, marriage, divorce, birth, death, the thrill of getting that new job we wanted, the melancholy of leaving an old job where we had good friends, happy beginnings, sad endings, etc. By the time I became seriously ill, some of my own Life “ups” had been magnificently exhilarating. Some of my Life “downs” had been the scorched earth variety of devastating. However, both the ups and the downs carried value because I had learned important lessons from each. For purposes of later managing what was to become my chronic illness the downs arguably contained the most important lessons because, if you think about it, our most profoundly sad Life experiences involve loss and the Life Lessons of how to cope with it. Knowing how to cope with loss and to already have strategies in place for dealing with it when it comes knocking can be an extremely valuable tool to have in one’s toolbox. This is particularly true when one begins dealing with the loss of the life one had as a healthy person. In my opinion, a person like me who experiences the onset of chronic illness later in life may well have this valuable tool available in their coping toolbox. Another difference appears applicable to those of us who do not become chronically ill until middle age: In my case, by that stage in my Life Cycle I (like most of us) had not only had the experience of one or more Life losses, I had also survived those losses. There’s a certain self-confidence born of surviving a bad experience or loss. Once we’ve survived one bad experience or loss, lesser bad experiences and smaller losses can seem less daunting. We now have a measuring stick (the terrible experience we survived) against which to measure subsequent bad experiences. Speaking for myself, younger me didn’t typically have the self-assured attitude enjoyed by older me of “I’ve survived some pretty terrible losses in the past. I, therefore, KNOW I can survive this.” Older me is more serene in the knowledge that if past losses haven’t defeated me, new losses certainly won’t either. This provides an additional tool for the coping toolbox that we can employ in managing the onset of a chronic illness. I have also realized that experiencing the onset of chronic illness later in life has meant that I had previously had the opportunity to experience many major life events as a healthy individual. In my case, prior to being stricken with a serious illness, I had already had an opportunity to pursue my dream of putting myself through college and law school. I had likewise had an opportunity to experience marriage and to have my babies. I had successfully pursued a career I enjoyed and had even achieved what was for me my ultimate Dream Job. I had also learned to ballroom dance and to excel in a sport I enjoyed. Although many of us with chronic illness will naturally grieve the loss of the more physically capable life we have left behind, I did not experience a sense of having “everything” taken away from me when I became disabled at an older age. This is because I had already had a chance to pursue some goals which had felt important to me and to live some Life while enjoying good health. I had gotten to DO some things I had wanted to do. Not to sound trite, but as an older person, I was able to fully appreciate the Dr. Seuss saying of “Don’t cry because it’s over. Smile because it happened.” This has been another useful coping tool for the chronic illness management toolbox. As an older person, I had also had the opportunity to get to know myself pretty well by the time my onset of chronic illness occurred. I know my individual quirks. For example, younger me wouldn’t know (as older me does) that if I silently engage in artistic, creative endeavors for a few hours, it will help calm me down if I’m feeling upset. As with many older people, I thus have tried, and true coping mechanisms I know will see me through challenging times. Older me knows just what to do to soothe my soul when I’m feeling battered by Life. This is another tool in the coping toolbox which is arguably “age group specific.” In my opinion, all of these factors add up in such as way as to provide inherent age group specific tools for those of us who are older when we cope with the onset of disability and chronic illness management. Younger people likewise arguably have age group specific tools in their coping toolboxes. Although I do not have firsthand, personal experience with such tools (since my onset of chronic illness occurred later in life), I have observed them in young adults and children I know. For example, teenagers and younger adults may be better connected with their people. This is because they are arguably more likely than we older people to communicate frequently with others through computer and smartphone technology. Such technology enables a physically limited person to “stay connected.” with others 24/7 if they’d wish. Teenagers and younger adults also possess an online savvy which may additionally provide an enhanced ability to research and better understand the nuances of their medical conditions. Such research capabilities may provide a person with a better sense of control over the situation. They may also be more predisposed to take advantage of online support groups. A teenager or young child may be more likely to have a built-in support system of family living under the same roof to assist them that an older individual may or may not have. This can be an extremely important tool in one’s toolbox, especially if the family proactively helps the teenager or child prepare for adulthood by ensuring he or she learns about appropriate assistive devices and management strategies. Any medical provider worth their salt will tell you that when it comes to treating medical illness, children are not simply smaller adults, women are not simply smaller men, and the elderly are simply younger adults with gray hair. What we can easily lose sight of is a corollary to that: The day to day coping strategies for (and management of) one’s chronic illness can likewise be very different experiences for these individual groups as well… especially with regard to where we are in our Life Cycles. Each age group brings its inherent situational strengths to the table in coping with chronic illness. It seems to me that if we of different age groups can find a way to proactively reach out to one another as mentors, all of us will benefit. If there were an organization to facilitate and coordinate such mentoring, in my opinion, the quality of many lives would likely be improved. Return to Table of Contents
  14. edriscoll

    EDS Why Zebras?

    Why are EDS patients called Zebras? Patients with EDS frequently call themselves Zebras, why? According to the Ehler's Danlos Society, it originated from something taught to medical students about diagnosing patients - "When you hear hoofbeats behind you, don't expect to see a zebra" In other words, look for the most common and usual, not the most unusual when diagnosing a patient. The Zebra became the symbol for EDS patients because, as with most dysautonomia disorders, it takes years to gain a diagnosis because the patient looks too "normal" or seems too young to have so many ailments. Generally, it is unexpected and unusual. The Zebra symbolizes the idea that "when you hear hoofbeats, it really is a zebra". For more information about Ehler's Danlos Syndrome, visit https://ehlers-danlos.com For information about POTS symptoms and treatments, visit https://www.dinet.org/content/information-resources/pots/
  15. The University of Alberta and McGill University released their findings for a new therapeutic agent that may hold the potential for the prevention of MS. In the new study, according to the synopsis published in Medical News Today, the researchers examined tissues from donated human brains. They found that the brains of people with MS had very high levels of a protein called calnexin compared with the brains of people who did not have MS. The team then used mice that had been bred to model human MS to examine the influence of calnexin in living creatures. The study authors were very surprised to find that mice that did not have calnexin seemed to be “completely resistant” to MS. Marek Michalak, from the University of Alberta said that he and his colleagues believe that these findings have identified a potentially vital target for developing future MS therapies. Study:Calnexin is necessary for T cell transmigration into central nervous system First published 3/8/2018 by JCI Insight (Journal of Clinical Investigation), Vol 3, Issue 5 Authors:Joanna Jung, Paul Eggleton, Alison Robinson, Jessica Wang, Nick Gutowski, Janet Holley, Jia Newcombe, Elzbieta Dudek, Amber M. Paul, Douglas Zochodne, Allison Kraus, Christopher Power, Luis B. Agellon, Marek Michalak University of Alberta and McGill University https://insight.jci.org/articles/view/98410 Medical News Today By David Railton, published 3/14/2018 Fact checked by Jasmin Collier https://bit.ly/2GhF5FK Neuroprotective Diet for MSA Patients (Multiple System Atrophy) Information from the MSA Coalition says that although the causes of MSA are still not known, daily food choices can influence certain components of the disease process - slowing or speeding up inflammation, degenerative protein accumulation, nerve cell destruction and decreased neurotransmitter levels. The diet focuses on calorie restriction, low- protein and protein redistribution combined with an anti-inflammatory diet that includes high antioxidant foods. From the MSA Coalition, https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet _________________________________________________________________________________________________________________ FDA Authorizes Marketing of First Blood Test to Aid in the Evaluation of Concussion in Adults The FDA approved the first blood test to evaluate mild traumatic brain injury (mTBI) commonly referred to as concussion in adults. The test called the Banyan Brain Trauma Indicator, is expected to be released for use in less than 6 months as a part of the FDA’s Breakthrough Devices Program. The test promises to be a better indicator of trauma citing that most people with suspected concussion are examined and given a CT Scan to test intracranial lesions and tissue damage. However, in the majority of people evaluated, the CT Scan can not detect intracranial lesions. The blood test would give physicians a clear marker to indicate the need for a CT Scan, saving the patient needless exposure to radiation and saving the healthcare system millions of dollars. Published on the Food & Drug Administration website, FDA News Release https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm596531.htm February 14, 2018 Media: Tara Rabin Could Targeting Gut Bacteria Prevent Autoimmunity? Researchers from Yale University in New Haven, CT discovered that bacteria in the small intestine can travel to other organs and induce an autoimmune response. By administering an antibiotic or vaccine, the scientists found that they could suppress the autoimmune reaction in mice, reversing the effect of this bacteria on autoimmunity. A few of the illnesses that may benefit most from this research are Type 1 Diabetes,Systemic Lupus, Autoimmune Liver Disease and other autoimmune diseases linked to this bacteria. The new study complements prior studies that uncovered a link between gut bacteria and autoimmune diseases.One of those studies published in the journal Applied and Environmental Microbiology, showed that species of Lactobacillus in the gut of a lupus mouse were linked to a reduction of symptoms. The Study: Translocation of a Gut Pathobiont Drives Autoimmunity in Mice and Humans Bacterial involvement in Autoimmunity Published by Science, 3/9/2018 Vol 359, Issue 6380, pp 1156-1161 DOI: 10.1126/science.aar7201 A synopsis of the new study and links to the original studies can be found in Medical News Today https://www.medicalnewstoday.com/articles/321157.phpBy David Railton, published 3/9/2018 Postural Tachycardia in Hypermobile Ehlers-Danlos Syndrome: A distinct Subtype? A study was done to determine is patients with POTS and EDS differ from patients with POTS from other etiologies. The comparison of autonomic testing results along with healthcare utilization in POTS patients with and without EDS was examined. Results: The study concluded that while autonomic testing results did not differ dramatically between groups, the patients with POTS and EDS took more medications and had greater markers of healthcare utilization as well as chronic pain playing a prominent role. Study: NCBI PubMed: PMID: 28986003, DOI:10.1016/j.autneu 2017.10.001 https://www.ncbi.nlm.nih.gov/pubmed/28986003 Thanks to Lisa Carr for the contributions of research material that were gathered for this article. Return to newsletter
  16. Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen. The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon her daughter’s death, the desk was passed on to me. It was the only item inside an otherwise empty desk drawer. The note having become stuck years earlier inside the drawer's metal track may have stayed hidden had I not noticed it years later. Once found, I was determined to read it, so I tugged on it hard several times before I managed to pull it loose, tearing it a little. I unfolded it with great curiosity and found that my great grandmother had written: "Things always work out for the best for those who make the best of how things work out." That's all it said. But really, that's all it needed to say. Her signature appeared underneath. I’m no longer a teenager and have now lived enough decades to understand my great-grandmother 's wisdom. Her advice has stood me in very good stead, particularly with regard to my dysautonomia. Although my dysautonomia symptoms began eighteen years ago, it was only two years ago that they rather abruptly worsened and closed the door on my physical mobility. Suddenly, I found myself unable to stand for more than five minutes at a time, which remains true to this day. I also found myself with time limits regarding how long I could sit up. This change in my health forced me to lie supine for chunks of hours each day. Boredom quickly set in. I viewed all those hours of having to lie down as nothing more than unwanted, frustrating interruptions in my day. Then I remembered that motto: “Things always work out for the best for those who make the best of how things work out.” I set my mind to exploring how I could make the best of this immobility situation I now found myself in. I decided that one way to make the best of things might be to find something productive to do with my hands while I was lying down. One idea that came to me was to paint. I had dabbled with painting on and off since childhood. Painting while lying down seemed like a logical idea for fending off the boredom inherent in being forced to lay down so much. It seemed like it might be worth a try. If it didn’t work out, I would come up with another idea. So… my intention was to follow my great grandmother’s motto and try to make the best of how things had turned out. I was basically hoping that painting might serve as a solution to the problem of feeling frustrated, bored, and unproductive. However, it didn't take long for the painting activities to quickly assume a life of their own. They immediately transformed my hours of frustration and boredom into hours of delightful fun. I no longer feel frustrated or bored at all when the time comes for me to lie down. To my surprise, there have been other unforeseen, positive, ripple effects that have come from painting again. I’ve formed new friendships with some other local artists (who are very accepting of my physical limitations). I have been pleasantly surprised at being approached by a few people interested in buying my art. None of this would have happened if not for my attempts to follow that motto. I look back now and realize that before following my great grandmother's words, my energy was focused on the frustration of the situation instead of the betterment of it. I viewed having to lie down as an interruption of all-those-things-I-wanted-to-be-doing-instead, and that was that. Being constantly frustrated with the situation had put my mind in a negative place. In sharp contrast, I now view the daily lying down episodes as “Okay, now it’s time to shift gears and paint for a while.” The hours swiftly fly and I am having fun while waiting for my body to reboot and allow me to sit/stand up again. I have my great grandmother’s motto to thank for this. Remembering to “Make the best of how things turn out” is, for me, a very powerful perspective shifter. It has helped me tremendously in adapting to my new physical limitations. When it comes to adjusting to my dysautonomia symptoms, I now proactively challenge myself to seek out ways to respond to the question “How can I make the best of this?” This shift in perspective has definitely helped me to maintain a happier life despite my physical limitations and life-altering circumstances. I feel lucky and grateful to have found her words when I did. Likewise, I hope you are able to find my great grandmother’s motto helpful as you work through your own unique dysautonomia challenges. Those of us with dysautonomia are each a little bit different but are also so much the same. You are not alone. Editor's note: Missy's art can be seen on her website Return to newsletter
  17. “It will happen slowly, but it will happen.” I remember my neurologist, Dr. X, standing in front of me, her stethoscope around her neck and her hands in her pockets. She was quiet, relaxed and exuded confidence. Her composure gave me faith that it truly would happen. The Brain Fog would loosen its grip and my short-term-memory would improve. My cardiologist referred me to Dr.X because I had a panic attack at a zoo after getting separated from my husband. I didn’t even think to call to reach for my phone. I sat down on the closest bench and willed myself not to cry. I guess sitting was enough of a rest to bring back some clarity because I remembered the phone in my pocket. But before I could even call, I looked up and there he was. He had come back for me. I was shaken to the core. This event became a part of my history and one of the factors in my dysautonomia diagnosis. A few weeks earlier, Dr. X had ordered several head scans and a round of memory testing. The results were mixed. Physically there was nothing wrong that they could see in the MRIs but the memory testing showed I had some problems with recall and acuity. I knew I could not figure out how to put a tray of colored blocks into patterns fast enough. Sigh. She said, “ Too early, it’s too early for that for you”. We talked about my life, what I had done, what I would like to continue doing and what was special to me. I needed to get my brain juices flowing again. I am not sure how she got me to think this was my idea but Dr.X is a master of beneficent persuasion. I told her I read every day, I love adult coloring and taking photos with my cellphone. I had set my fate; it was like that great line from Ghostbusters, “You have chosen the destroyer.” Well, I had chosen. She liked me reading every day but suggested it should be non-fiction and subjects that are new to me. She liked adult coloring but only if I drew my own line drawings to fill in. Photography is a great hobby, but I needed to take photos in unfamiliar places. She also threw in making things by hand. I liked the thought of all of this and I accepted it. I think that accepting was the most important part. She recommended (with twists), what I already loved to do. Since I will be doing this forever, it is important to love your therapy. I love gardening and horticulture and fully embraced university extension factsheets - short and sweet, info-laden pages about plants, animals, or foods related to our lives and environment. I average about a half-dozen a week. It’s amazing how fast you can tear through a few pages about the flowers, herbs, or pollinators you love. There are a zillion topics to choose from and all non-fiction. My other joy has been cooking new recipes from old cookbooks. Again, reading. My thrift-store cookbook addiction has finally paid off. Right now I’m learning how to cook for my freezer which equals a fast and healthy dinner instead of take-out when I want to crash instead of cooking. Last week I froze polenta wedges and bags of cooked chicken strips I made on the electric grill. The week before I did some sweet potato puree and bags of chopped onions. I’ve got bags of frozen rice and cooked noodles tucked away. I make at least a dozen servings of each recipe so it’s worth the “spoons” I use for prep time. We’ve cut down greatly on takeout so overall this is a big plus. We eat a lot healthier and we keep our take-out money in our wallet. Please tip the cook. Another big gain came from reading DINET’s Facebook feed. Not every article is about dysautonomia and I enjoy reading the personal perspectives. More than anything else, I’ve gotten an education in how dysautonomia affects our lives. I can now dialogue with my doctors and better explain to family or strangers what we experience. Taking photos is easy - getting someplace new is not. My cardiologist already prescribed a daily walk -either outside or at the mall. I limit driving - no joy rides - just to the doctor or the supermarket across the street. I don’t go far. I park on top of the mall’s highest lot and took panorama shots of the skyline in the distance. I go downstairs and inside and take sienna tints of shoppers rushing by my bench. I go into to the dressing room and do a personal photo shoot of myself in fashions I would never buy. Well, not all the pieces! I take different photos of different things in different places. Mission accomplished. Each day I walk my two dogs separately (four walks a day!). I used to keep the phone in my pocket, but now it stays in my hand. I take pictures of what thrills me that moment - bark, molds, flowers, critters, clouds in the sky shaped like ducks. I usually delete more than I save - but the ones I save are keepers. Neurotherapy can do more than give you clarity; it improves your life. You are better able to interact with people and the world again. I’ve heard knowledge is power, but in this case, knowledge equals confidence. I don’t know what I look like to strangers when I’m grasping for words. It bothers me deeply that people see me impaired. Do they think I’m drunk or witless? Am I allowed out by myself? But now, I no longer find myself searching so often for words in a conversation. I am not hesitant to speak because I can find many words in my head, not just the one I lost in thought. Being able to have a conversation go to its end is something so many take for granted. I did, too. Learning about my condition has given me a greater vocabulary. I have a larger arsenal of words and phrases to bring to mind when I am suddenly at a loss for a specific word. In the last few months, I feel like the fog is clearing. I can recall discussions much better—I’m no longer asking my Hubs what he wants for dinner six times in a row. I think the last few months have been some of my most productive since my symptoms showed up three years ago. I’ve made advances in clarity and cognition. I can articulate better and I have more energy for “spoons” saved. We eat better and the dogs love it when I pick up that camera. And Hubs is sure happy--who doesn’t love a dinner like grandma used to make?! Editor's note: AdultColoringBook_TrudiDavidoff.pdf Download and enjoy! Return to newsletter
  18. DINET member name: Rachel Friemel Rachel's hometown: Davenport, IA Diagnosis: Dysautonomia Website: http://www.rachelfriemel.com and https://www.saatchiart.com/LittleRae In Rachel's words.... I am a digital and fine artist as well as a photographer and graphic designer. I started showing symptoms of dysautonomia during my senior year of college while I was working on my Honors art show. My skills are versatile, so depending on what symptoms are flaring up, I can still work on creating pieces of art. Screen Printing and Digital art are the most "Spoonie Friendly" mediums for me. Screen printing and digital mediums are a blessing because there is no time frame on when a step needs to be finished. If I'm having a bad flare and can't get to a piece for a few weeks, it will still be waiting for me. I do have bad days when there is nothing I can do, but I use that downtime to enjoy other artist's work. Her work can be seen on her site, http://www.rachelfriemel.com and also on the site, https://www.saatchiart.com/LittleRae The saatchiart site has the added bonus of showing the art and collections that Rachel enjoys viewing, in addition to showing her work.
  19. DINET member name: Jayne The Daily Manic Jayne's hometown: Geelong, Victoria, Australia Diagnosis: EDS (Hypermobility type) and Dysautonomia Blog: www.thedailymanic.com website: https://thechangeplace.com.au/ On ebay: https://m.ebay.com/itm/Freedom-to-Choose-Online-Life-Coaching-Program/182862702659?hash=item2a93776843:g:6XcAAOSworNaCTVp In Jayne's words..... I have been diagnosed with Ehlers Danlos Syndrome (Hypermobility Type) and Dysautonomia. Dysautonomia has been the thing that has forced me to considerably change the way I live and work. After having gone through massive life change myself, I wanted to combine what I had learnt, together with my coaching experience, into something that would help others in a similar predicament. I was also very keen to develop something that was an affordable alternative to conventional life coaching, since finances often get impacted when you become ill or when life changes. I am really passionate about helping others and wanted to continue to do so with something that suits the way I now need to work and that is also readily accessible for people who may not be able to afford or get out to see a life coach. Jayne on finding your purpose.... What Jayne does..... I manage my own blog thedailymanic.com aimed at providing support to those who wish to slow down – whether due to illness or just to escape the madness that is life! I am also a trained change coach by trade (my business is called thechangeplace.com.au) and I’m now converting a lot of my knowledge into online products that hopefully should make it easier for me to contribute towards something I am very passionate about. The project that I have recently launched is a self-paced online life change program called Freedom to Choose which is for anyone who needs to slow down or live life differently. It’s a 12 week (or thereabouts) program aimed at prompting reflection on how you are living your life currently and identifying a new vision to aim for. The program is available for purchase for USD $60 (or make an offer!) which includes membership of a Facebook coaching group and support via Messenger group (both managed by me). Note: Jayne has generously offered to make a donation from any product purchased through her ebay shop. Thank you Jayne for your support of DINET.
  20. DINET member name: Cassandra Pacquin Cassandra's hometown: Cool Springs, NC Diagnosis: EDS, Mast Cell, Congestive Heart Failure email: juscass86@gmail.com website: Eagles Wings Studio https://www.facebook.com/EaglesWingsStudioNC/ In Cassandra's words..... Hello!! My name is Cassandra and I'm an EDS Trifecta Zebra with Dysautonomia and Mast Cell as well as congestive heart failure. I'm a chef/owner of our family artisan granola bakery business. Over the past year I've had to refocus my energy and talents due to my limitations and have gone back to my original loves of mixed media inspirational art and writing. I love being able to put my education from UMass/Amherst in Fine Arts to good use again!! My pieces are combined mixed texture and finish high-end papers, Austrian Crystals, silk and textured mat finish, and shadow boxes with glass fronts. Each is an original and crafted with love and inspiration. The purple piece is one I recently sold, the one of the leaves is a work in progress that will be 2 6x6 matching pieces with Ecclesiastes 3:1 "To every season..." split between the two. It comprises 4 different colors of textured papers and Swarovski Austrian crystals in amber, and will be matted in a dark brown beveled mat finish and framed in matching black shadow boxes. The pink piece is currently available for sale on the Eagles Wings Studios FB page.
  21. Hello DINET Members, October is Dysautonomia Awareness Month! As a way to help spread awareness, I have created a few images for anyone who is interested. They can be used as facebook profile pictures, posted on facebook timelines, or posted on blogs. If you are interested in using one of these images, you can find them here on DINET's facebook page: https://www.facebook.com/media/set/?set=a.726769044005025.1073741825.226087287406539&type=1 Happy awareness month! Rachel
  22. This is an interesting article published by Mayo Clinic this month. They have created a new scoring system to assess autonomic dysfunction. You can find the article here: COMPASS 31: A Refined and Abbreviated Composite Autonomic Symptom Score. I am linking to the abstract, but you can click on the tabs to view the full text or the PDF version.
  23. AHHHHHH!!!!! Im so excited!!! Tune into the Lou M. Dennehy Chat Show Monday 28th November on Wired 99.9FM to hear Lette Moloney speak to Lou about Irish Dysautonomia Awareness. The show airs live between 12.00pm - 12.30pm (Irish Time) It can be streamed via http://www.wiredfm.ie/?p=847 and will be available on Soundcloud after the show, ill add the link here, I hope to do you all proud!! xxx :)
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