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Found 16 results

  1. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9869552&dopt=Abstract</p>
  2. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8314116&dopt=Abstract</p>
  3. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9869552&dopt=Abstract</p>
  4. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8314116&dopt=Abstract</p>
  5. 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.
  6. edriscoll

    POTS: An overview

    An overview of Postural Orthostatic Tachycardia Syndrome Standing up is something most of us take for granted; we've been doing it since childhood. Our bodies automatically adjust to the pull of gravity by increasing vascular tone, heart rate, and cardiac output. Blood vessels contract, heart rates increase and our systolic blood pressure remains the same or decreases slightly while diastolic pressure increases slightly (Brunner & Suddarth, 2000, p. 546). Our bodies operate in perfect homeostasis and we stand up with little effort. However, the simple act of standing up can be a challenge for some people. There are disorders that affect the body's ability to appropriately adjust to the pull of gravity. When the body cannot effectively adjust to upright posture, a person is said to have orthostatic intolerance. Postural orthostatic tachycardia syndrome (POTS) is a disorder characterized by orthostatic intolerance. POTS is a disorder that is a part of the dysautonomia family of disorders. The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012) (Arnold, Ng, Raj, 2018) While the hallmark of POTS is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation, and research by the Mayo Clinic suggests POTS is a limited autonomic neuropathy (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Many POTS symptoms seem to be caused by an imbalance of the Autonomic Nervous System's (ANS) control over blood flow. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs (Fischer, 2007). The autonomic nervous system is responsible for regulating a multitude of organs and functions throughout the body. Some of these functions include temperature, respiration, pupil dilation and constriction, salivation and the digestive tract. A patient experiencing ANS dysregulation may experience abnormalities in the many organs and functions the ANS regulates. For example, around one third to one-half of POTS patients have digestive troubles (Fischer, 2007). The problem is that blood flow is not matching the need, so blood is not going to the right part of the intestinal system when it needs to. As a result, these people have trouble with nausea. For a smaller percentage of patients, the trouble is that there is too much blood in parts of the intestines. The body is attempting to digest food when there is no food to digest. This leads to cramping and colicky-like pains (Fischer, 2007). Patients commonly suffer from cognitive dysfunction, sleep disturbances and exercise intolerance. The symptoms can be exacerbated by numerous factors including dehydration, heat exposure, prolonged recumbency (resting, reclining), alcohol, menstruation, and acute exercise. Syncope (fainting) is not a predominant feature of POTS (only ~20–30% actually pass out, and this is usually thought to be due to vasovagal syncope) (Shen et al., 2017); however, many patients experience frequent pre-syncopal episodes that impair functional capacity. (Arnold, Ng, Raj, 2018) POTS can be categorized as primary, meaning it is idiopathic and not associated with other diseases, or secondary, meaning it is associated with a known disease or disorder (Grubb, Kanjwal & Kosinski, 2006). Common comorbidities include chronic fatigue syndrome, hypermobility type of Ehlers-Danlos syndrome, migraine, bowel irregularities, autoimmune disorders, and fibromyalgia(Garland et al., 2015). POTS is described as a clinical syndrome consisting of multiple heterogeneous disorders (disorders with diverse character). Some have taken to labeling "POTS Subtypes", with article published alluding to hyperadrenergic POTS ("Hyper POTS"), neuropathic POTS ("Neuro POTS"), or hypovolemic POTS. It is important to note that these subtypes do not all have standard definitions therefore there is a non-exclusivity of names with patients often having overlapping clinical features and symptoms that involve more than one subtype. Also, these subtypes do not have universally accepted definitions, so the labels can be misleading. "While one doctor may use the term "Hyper POTS" to refer to a specific set of findings, another doctor might think that it refers to a different set of findings. In theory, this could harm a patient's care. In our experience, these "subtype" labels are not clinically helpful." (Arnold, Ng, Raj 2018) People generally develop POTS after becoming sick with a virus, giving birth, or being exposed to great bodily stressors (i.e. surgery, trauma or chemotherapy). Some people have had POTS their entire lives. Teenagers sometimes develop the disorder during the years of rapid growth, and 75-80% of them can look forward to being asymptomatic when they reach adulthood (Grubb, Kanjwal & Kosinski, 2006). The symptoms of POTS are life-altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder. It was once estimated that nearly 500,000 Americans had POTS, which made standing up a challenge (Robertson, 1999). However, with research advances and growing physician education, the number of people found to have POTS symptoms is steadily rising. It is now estimated that one out of every hundred teens has POTS (Fischer, 2007). The minimal requirements to detect POTS on initial evaluation are a detailed medical history, physical examination with orthostatic vitals and a resting 12-lead ECG (Sheldon et al, 2015) The medical history should document medications, other medical conditions including personal and family history of cardiac disease, joint hypermobility, autoimmunity or neurological disorders, and the nature of tachycardia including potential triggers, frequency, time of day, association with pre-syncopal or syncopal episodes, symptoms, and impact on daily activities. (Arnold, Ng, Raj 2018) POTS has a strong female predominance (4–5:1), and primarily affects women of childbearing age. Most patients present with POTS between 13 and 50 years of age, with a family history of orthostatic intolerance reported in approximately 13% of patients (Thieben et al., 2007).The onset can be sudden or gradual. The quantity and severity of symptoms vary from day to day. There are treatments for POTS symptoms which can be tailored to each individual patient, especially if an underlying cause is discovered. Researchers are attempting to identify and treat the mechanisms and causes of POTS. Studies show that most patients will eventually be able to stand up with fewer symptoms (Low, 2000). Most people with POTS can look forward to experiencing improvement with proper treatment. For more information on POTS, please view our other POTS links and resources. References 1. Amy C. Arnold, Jessica Ng, Satish Raj Postural tachycardia syndrome: Diagnosis, Physiology and Prognosis Autonomic Neuroscience, Vol 215 December 2018 https://doi.org/10.1016/j.autneu.2018.02.005 2. 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= 3. 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. 4. Fischer, P. (2007). Postural orthostatic tachycardia syndrome. Mayo Clinic Podcast. http://www.podcastingnews.com/details/www. mayoclinic.org/rss/heart-podcast.xml/view.htm 5. Goldstein, D., Robertson, D., Esler, M., Straus, S., & Eisenhofer, G. (2002). Dysautonomias: clinical disorders of the autonomic nervous System. Ann Intern Med., 137, 753–763. Full Text 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., Kanjwal, Y., & Kosinski, D. J. (2006). The postural tachycardia syndrome: A concise guide to diagnosis and management. J Cardiovasc Electrophysiol., 17, 108-112. 9. 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. 10. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota. 11. Robertson, D. (1999). The epidemic of orthostatic tachycardia and orthostatic intolerance. The American Journal of the Medical Sciences, 317, 75- 77. 12. 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. Full Text
  7. DINET member name: Skydersaur Skyler's hometown: Dallas Fort Worth, TX Diagnosis: Inappropriate sinus tachycardia, autonomic dysfunction and most recently ME/CFS Blog: https://spoiledbrats.org In Skyler's words..... I started blogging about natural health and wellness a few months ago after I married a very technologically talented man. We have both relied on natural remedies to go along with our prescribed medications and decided we should be sharing our healing with others! While my husband does all of the behind-the-scenes work on my website, I write the content and take photographs for it - two things I have always loved to do that chronic illness has not taken away from me. I enjoy hearing others share their story of wellness and contributing to it by sharing what has worked for me. One of my favorite natural wellness tools to use is essential oils. I have found that aromatherapy is great for days that I am feeling quite fatigued, and I am discovering other uses for essential oils, like topical application for pain. This blog has helped me rediscover my love of learning, sharing knowledge, and serving others!
  8. I am having the run around with doctors where I live. There is no one here that really understands autonomic dysfunction and I keep being told I am just a fainter. I really don't want to spend the money or time away from my kids to go to a mayo clinic doctor. Will they tell me anything else besides drink water, more salt, compression socks, lower stress, ect? Any info would be appreciated. I also found in some labs that I have extremely low levels of normetanephrine and metanephrine and no one can really tell me why or what to do? Anyone else have this issue?
  9. I was just reading the other day on a post regarding hormones, etc...... and i read something that issie had written about aspartame and how it works in the body/brain and then i was reading how it (phenylalanine) is a precursor for tyrosine, the monoamine signaling molecules dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). And also L-Phenylalanine is biologically converted into L-tyrosine, another one of the DNA-encoded amino acids. L-tyrosine in turn is converted into L-DOPA, which is further converted into dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). The latter three are known as the catecholamines. (ok, i copied all that from wikipedia)...... cuz my poor give out brain can't make sense of what this does. What's going on is: for the past 4 nights i have eaten gluten free yogurt (1/2 of a small container a night before i go to bed) and it has aspartame in it. Each morning i have woke up to a functional morning...... and a fairly functional day. A seriously significant improvement that i haven't felt in about 2 years. Of course, im also implementing the gluten free diet as best as i can..... and i noticed that 3 of those nights, that i slept hard, without waking up, a full night's sleep and well and actually woke up feeling like i had rested and i haven't felt that in probably 9 years, ever. Keep in mind, I started on my period yesterday, so the 2 days before that and up until now would have been my most severe days of the month, as most of us are most severe the days before and during our periods. So, even with going into my monthly cycle and during it, all the sudden it's a very, very noticable change...... not a cure all, but it's just so obvious something is different. I have thought this over and over the past few days since i read that post first about the aspartame, and then i was eating that yogurt and just happened to notice the next mornings were different, far different than id felt in a long time..... then i put 2 and 2 together and wandering if the aspartame could be contributing to this. But i can't seem to eat a whole container, if i eat the whole container, i feel some of the negative side effects, but a half one i seem to tolerate for the time being...... BUT is it this? that is making the difference??? I haven't changed any meds, other than going from generic zantac to the brand for a week, for my mcad. I may be jumping to conclusions..... or it could be the brand named zantac? Or it could be a few days of remission..... But this is such an evident difference that i have never felt in a good 2-3 years, possibly more. I've walked around for days (get that??? i've walked more than i have in forever! but tire very very quickly still).... but have walked around wandering what it is that could be making this much of a difference and i cant figure it out. I have had 4 mornings that i could get out of bed and go. Of course, i run down fast and all, but i can tell something is different..... even the digestive issues have lightened up considerably... (could be due to the probiotics that is in the yogurt as well). Is anyone's brain working today, cuz i still can't seem to make sense of it, or even if this is possible? Any thoughts, suggestions, ideas on the aspartame and how it affects the brain, in lamens terms? thanks!! tennille
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