What is DYSAUTONOMIA?

Mitral valve prolapse is so named because a very slight posterior motion is seen as the mitral valve closes. The mitral valve is designed to undergo significant movement as it opens and closes during cardiac action, or flexibility. It is not harmful and causes no damage to the heart or to the body. The array of troublesome and often frightening symptoms which may be seen from time to time in people with this valve movement is not due to this extra motion, or prolapse, of the valve. The associated symptoms which might include dizziness, numbness, chest pain or pressure, palpitations, anxiety, sleeplessness, gaseousness, bowel symptoms or actual diarrhea, and mood swings have been termed Mitral Valve Prolapse Syndrome.
These symptoms are not due to the prolapse of the valve itself.Many Individuals have come to recognize that the prolapse of the mitral valve ( the other valves of the heart can similarly prolapse as well) is actually just a marker, or an identifier, for a person with this complex of symptoms, and not the prime cause of the symptoms.Most often, these and other symptoms are clearly related to the excessive drive or hyper- function of the autonomic nervous system, which can be thought of as the "automatic" nervous system. This system controls functions of our body, such as pulse rate, blood pressure, breathing, digestion, blood sugar, the size of our pupils in dark and light, and the dilatation of our peripheral blood vessels under hot conditions, and contraction in cold conditions. It also is related to our state of anxiety and sleep/wake conditions. It is both the stress nervous system and the digestive nervous system, having two states which are normally fine-tuned and balanced.We are quite familiar with what our body does under stress, such as before giving a talk, a performance, an examination, an important interview, or before an anticipated stressful event. We often have sweaty, yet cool hands, hard pounding of the heart, slight breathlessness, dryness of the mouth, increasing frequency of urination, looseness of bowels, and if measured, some increase in blood pressure. This familiar pattern of behavior of our body is due to excessive adrenaline and similar hormones from the autonomic nervous system as a result of the stress. The anticipated event has "gotten our juices flowing." This is the response of our body to acute stress. After the event is over, sensations experienced prior to it generally subside. We have met the stress and dealt with it, diffusing and halting the stress hormones responsible for it.However, certain individuals with perhaps more moderate levels of stress continue to experience bodily sensations of the stress syndrome, though on a more chronic basis. It is as if the stress hormones remain turned up, or our bodies respond to these hormones with continuing stress symptoms. These individuals seem to have a more reactive or hypersensitive autonomic (stress) nervous system. This had led some researchers to call the syndrome "DYSAUTONOMIA." It is of interest that many patients with mitral valve prolapse have (or are subject at some point over the years to have ) symptoms of dysautonomia. Similarly, a certain percentage of patients with dysautonomia or mitral valve prolapse syndrome have other related findings, such as scoliosis; curvature of the spine, usually mild, or bony chest abnormalities (such as pectus excavatum). Many women have fibrocystic breast problems and excessive premenstrual symptoms (PMS), and even temporomandibular joint problems, or TMJ.Thus, it seems clear that the tiny movement of the heart's mitral valve is not causing all of these varied manifestations of a syndrome encompassing many bodily functions. Perhaps there is good reason then to call this complex of symptoms DYSAUTONOMIA or Mitral Valve Prolapse Syndrome to indicate our understanding of the fact that there is far more involved here than a small amount of prolapse of the mitral valve.

What is DYSAUTONOMIA?

Mitral valve prolapse is so named because a very slight posterior motion is seen as the mitral valve closes. The mitral valve is designed to undergo significant movement as it opens and closes during cardiac action, or flexibility. It is not harmful and causes no damage to the heart or to the body. The array of troublesome and often frightening symptoms which may be seen from time to time in people with this valve movement is not due to this extra motion, or prolapse, of the valve. The associated symptoms which might include dizziness, numbness, chest pain or pressure, palpitations, anxiety, sleeplessness, gaseousness, bowel symptoms or actual diarrhea, and mood swings have been termed Mitral Valve Prolapse Syndrome.
These symptoms are not due to the prolapse of the valve itself.Many Individuals have come to recognize that the prolapse of the mitral valve ( the other valves of the heart can similarly prolapse as well) is actually just a marker, or an identifier, for a person with this complex of symptoms, and not the prime cause of the symptoms.Most often, these and other symptoms are clearly related to the excessive drive or hyper- function of the autonomic nervous system, which can be thought of as the "automatic" nervous system. This system controls functions of our body, such as pulse rate, blood pressure, breathing, digestion, blood sugar, the size of our pupils in dark and light, and the dilatation of our peripheral blood vessels under hot conditions, and contraction in cold conditions. It also is related to our state of anxiety and sleep/wake conditions. It is both the stress nervous system and the digestive nervous system, having two states which are normally fine-tuned and balanced.We are quite familiar with what our body does under stress, such as before giving a talk, a performance, an examination, an important interview, or before an anticipated stressful event. We often have sweaty, yet cool hands, hard pounding of the heart, slight breathlessness, dryness of the mouth, increasing frequency of urination, looseness of bowels, and if measured, some increase in blood pressure. This familiar pattern of behavior of our body is due to excessive adrenaline and similar hormones from the autonomic nervous system as a result of the stress. The anticipated event has "gotten our juices flowing." This is the response of our body to acute stress. After the event is over, sensations experienced prior to it generally subside. We have met the stress and dealt with it, diffusing and halting the stress hormones responsible for it.However, certain individuals with perhaps more moderate levels of stress continue to experience bodily sensations of the stress syndrome, though on a more chronic basis. It is as if the stress hormones remain turned up, or our bodies respond to these hormones with continuing stress symptoms. These individuals seem to have a more reactive or hypersensitive autonomic (stress) nervous system. This had led some researchers to call the syndrome "DYSAUTONOMIA." It is of interest that many patients with mitral valve prolapse have (or are subject at some point over the years to have ) symptoms of dysautonomia. Similarly, a certain percentage of patients with dysautonomia or mitral valve prolapse syndrome have other related findings, such as scoliosis; curvature of the spine, usually mild, or bony chest abnormalities (such as pectus excavatum). Many women have fibrocystic breast problems and excessive premenstrual symptoms (PMS), and even temporomandibular joint problems, or TMJ.Thus, it seems clear that the tiny movement of the heart's mitral valve is not causing all of these varied manifestations of a syndrome encompassing many bodily functions. Perhaps there is good reason then to call this complex of symptoms DYSAUTONOMIA or Mitral Valve Prolapse Syndrome to indicate our understanding of the fact that there is far more involved here than a small amount of prolapse of the mitral valve.

What is DYSAUTONOMIA?

Mitral valve prolapse is so named because a very slight posterior motion is seen as the mitral valve closes. The mitral valve is designed to undergo significant movement as it opens and closes during cardiac action, or flexibility. It is not harmful and causes no damage to the heart or to the body. The array of troublesome and often frightening symptoms which may be seen from time to time in people with this valve movement is not due to this extra motion, or prolapse, of the valve. The associated symptoms which might include dizziness, numbness, chest pain or pressure, palpitations, anxiety, sleeplessness, gaseousness, bowel symptoms or actual diarrhea, and mood swings have been termed Mitral Valve Prolapse Syndrome.
These symptoms are not due to the prolapse of the valve itself.Many Individuals have come to recognize that the prolapse of the mitral valve ( the other valves of the heart can similarly prolapse as well) is actually just a marker, or an identifier, for a person with this complex of symptoms, and not the prime cause of the symptoms.Most often, these and other symptoms are clearly related to the excessive drive or hyper- function of the autonomic nervous system, which can be thought of as the "automatic" nervous system. This system controls functions of our body, such as pulse rate, blood pressure, breathing, digestion, blood sugar, the size of our pupils in dark and light, and the dilatation of our peripheral blood vessels under hot conditions, and contraction in cold conditions. It also is related to our state of anxiety and sleep/wake conditions. It is both the stress nervous system and the digestive nervous system, having two states which are normally fine-tuned and balanced.We are quite familiar with what our body does under stress, such as before giving a talk, a performance, an examination, an important interview, or before an anticipated stressful event. We often have sweaty, yet cool hands, hard pounding of the heart, slight breathlessness, dryness of the mouth, increasing frequency of urination, looseness of bowels, and if measured, some increase in blood pressure. This familiar pattern of behavior of our body is due to excessive adrenaline and similar hormones from the autonomic nervous system as a result of the stress. The anticipated event has "gotten our juices flowing." This is the response of our body to acute stress. After the event is over, sensations experienced prior to it generally subside. We have met the stress and dealt with it, diffusing and halting the stress hormones responsible for it.However, certain individuals with perhaps more moderate levels of stress continue to experience bodily sensations of the stress syndrome, though on a more chronic basis. It is as if the stress hormones remain turned up, or our bodies respond to these hormones with continuing stress symptoms. These individuals seem to have a more reactive or hypersensitive autonomic (stress) nervous system. This had led some researchers to call the syndrome "DYSAUTONOMIA." It is of interest that many patients with mitral valve prolapse have (or are subject at some point over the years to have ) symptoms of dysautonomia. Similarly, a certain percentage of patients with dysautonomia or mitral valve prolapse syndrome have other related findings, such as scoliosis; curvature of the spine, usually mild, or bony chest abnormalities (such as pectus excavatum). Many women have fibrocystic breast problems and excessive premenstrual symptoms (PMS), and even temporomandibular joint problems, or TMJ.Thus, it seems clear that the tiny movement of the heart's mitral valve is not causing all of these varied manifestations of a syndrome encompassing many bodily functions. Perhaps there is good reason then to call this complex of symptoms DYSAUTONOMIA or Mitral Valve Prolapse Syndrome to indicate our understanding of the fact that there is far more involved here than a small amount of prolapse of the mitral valve.

Dysautonomia is...

Dysautonomia is a blanket term for a family of conditions which involve the autonomic nervous system. The autonomic nervous system handles things like swallowing, breathing, the heartbeat, and other important functions which keep the body running smoothly. In a patient with dysautonomia, the autonomic nervous system does not work right, causing problems which can range from occasional dizziness to crippling pains.
Historically, this condition was known as “neurasthenia,” and it was said to appear in people with “weak” nervous systems. As medical science advanced, doctors began to realize that a range of conditions such as Shy-Drager Syndrome, chronic fatigue syndrome, neurocardiogenic syncope, pure autonomic failure, and Ruley-Day Syndrome actually involved some level of failure on the part of the autonomic nervous system. Although recognition encouraged diagnosis, treatment options are often limited, due to an imperfect understanding of dysautonomia.
An assortment of symptoms are associated with dysautonomia, including dizziness, tachycardia, poor motor coordination, headaches, difficulty swallowing, fainting, indifference to pain, and muscle spasms. Many patients also experience depression, in part because they sometimes have difficulty finding physicians who will treat them. Because the symptoms are often nonspecific and difficult to pin down, doctors may dismiss the patient as a complainer, rather than recognizing that the patient may actually have a medical condition.
Several potential causes for dysautonomia have been identified, including exposure to toxins, genetic inheritance, infections, and injuries. However, no firm cause has been proved to be linked with dysautonomia. Conditions in this family are also difficult to treat, with some patients trying an assortment of medications including pain killers, antidepressants, and drugs to manage heart rhythm.
The severity of dysautonomia varies considerably. Some patients live relatively normal, healthy lives and they are able to be quite active. Others may be bedridden or frequently ill, and in the case of people without a firm diagnosis, family members, employees, and friends may dismiss the severity of the condition. Much more research on dysautonomia is needed to learn more about what causes it and how to manage it.
For patients seeking care, sometimes several doctor visits are required. Some doctors are more receptive than others to non-specific complaints. It can help to visit a neurologist to get an evaluation of nervous system function, or to seek a doctor recommended by an organization which supports dysautonomia patients. Joining a support group or organization can also be very helpful for patients who are trying to cope with a new diagnosis

Dysautonomia is...

Dysautonomia is a blanket term for a family of conditions which involve the autonomic nervous system. The autonomic nervous system handles things like swallowing, breathing, the heartbeat, and other important functions which keep the body running smoothly. In a patient with dysautonomia, the autonomic nervous system does not work right, causing problems which can range from occasional dizziness to crippling pains.
Historically, this condition was known as “neurasthenia,” and it was said to appear in people with “weak” nervous systems. As medical science advanced, doctors began to realize that a range of conditions such as Shy-Drager Syndrome, chronic fatigue syndrome, neurocardiogenic syncope, pure autonomic failure, and Ruley-Day Syndrome actually involved some level of failure on the part of the autonomic nervous system. Although recognition encouraged diagnosis, treatment options are often limited, due to an imperfect understanding of dysautonomia.
An assortment of symptoms are associated with dysautonomia, including dizziness, tachycardia, poor motor coordination, headaches, difficulty swallowing, fainting, indifference to pain, and muscle spasms. Many patients also experience depression, in part because they sometimes have difficulty finding physicians who will treat them. Because the symptoms are often nonspecific and difficult to pin down, doctors may dismiss the patient as a complainer, rather than recognizing that the patient may actually have a medical condition.
Several potential causes for dysautonomia have been identified, including exposure to toxins, genetic inheritance, infections, and injuries. However, no firm cause has been proved to be linked with dysautonomia. Conditions in this family are also difficult to treat, with some patients trying an assortment of medications including pain killers, antidepressants, and drugs to manage heart rhythm.
The severity of dysautonomia varies considerably. Some patients live relatively normal, healthy lives and they are able to be quite active. Others may be bedridden or frequently ill, and in the case of people without a firm diagnosis, family members, employees, and friends may dismiss the severity of the condition. Much more research on dysautonomia is needed to learn more about what causes it and how to manage it.
For patients seeking care, sometimes several doctor visits are required. Some doctors are more receptive than others to non-specific complaints. It can help to visit a neurologist to get an evaluation of nervous system function, or to seek a doctor recommended by an organization which supports dysautonomia patients. Joining a support group or organization can also be very helpful for patients who are trying to cope with a new diagnosis

Dysautonomia is...

Dysautonomia is a blanket term for a family of conditions which involve the autonomic nervous system. The autonomic nervous system handles things like swallowing, breathing, the heartbeat, and other important functions which keep the body running smoothly. In a patient with dysautonomia, the autonomic nervous system does not work right, causing problems which can range from occasional dizziness to crippling pains.
Historically, this condition was known as “neurasthenia,” and it was said to appear in people with “weak” nervous systems. As medical science advanced, doctors began to realize that a range of conditions such as Shy-Drager Syndrome, chronic fatigue syndrome, neurocardiogenic syncope, pure autonomic failure, and Ruley-Day Syndrome actually involved some level of failure on the part of the autonomic nervous system. Although recognition encouraged diagnosis, treatment options are often limited, due to an imperfect understanding of dysautonomia.
An assortment of symptoms are associated with dysautonomia, including dizziness, tachycardia, poor motor coordination, headaches, difficulty swallowing, fainting, indifference to pain, and muscle spasms. Many patients also experience depression, in part because they sometimes have difficulty finding physicians who will treat them. Because the symptoms are often nonspecific and difficult to pin down, doctors may dismiss the patient as a complainer, rather than recognizing that the patient may actually have a medical condition.
Several potential causes for dysautonomia have been identified, including exposure to toxins, genetic inheritance, infections, and injuries. However, no firm cause has been proved to be linked with dysautonomia. Conditions in this family are also difficult to treat, with some patients trying an assortment of medications including pain killers, antidepressants, and drugs to manage heart rhythm.
The severity of dysautonomia varies considerably. Some patients live relatively normal, healthy lives and they are able to be quite active. Others may be bedridden or frequently ill, and in the case of people without a firm diagnosis, family members, employees, and friends may dismiss the severity of the condition. Much more research on dysautonomia is needed to learn more about what causes it and how to manage it.
For patients seeking care, sometimes several doctor visits are required. Some doctors are more receptive than others to non-specific complaints. It can help to visit a neurologist to get an evaluation of nervous system function, or to seek a doctor recommended by an organization which supports dysautonomia patients. Joining a support group or organization can also be very helpful for patients who are trying to cope with a new diagnosis

What is dysautonomia?

Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of our bodies, including our cardiovascular system, gastrointestinal system, metabolic system and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose signifi cant challenges for effective medical treatment. Orthostatic intolerance (the inability to remain standing) is a hallmark of the various forms of dysautonomia. Dysautonomia conditions can range from mild to debilitating and, on rare occasions, can even be life threatening. Each dysautonomia case is unique and treatment must be individualized. Patients should be evaluated by a physician who is well-versed on the recent treatment methods. How is it diagnosed? To diagnose dysautonomia, a tilt-table test is usually performed. This test evaluates how the patient regulates blood pressure in response to simple stresses. Tilt-table testing involves placing the patient on a special table with a foot-support. The table is tilted upward while various machines monitor blood pressure, electrical impulses in the heart and oxygen levels. The following diagnostic terms may be issued to children with forms of dysautonomia: •Postural Orthostatic Tachycardia Syndrome (POTS) •Neurocardiogenic Syncope (NCS) •Neurally Mediated Hypotension (NMH) •Vasovagal Syncope •Post-Viral Dysautonomia •Familial Dysautonomia •Non-Familial Dysautonomia •Generalized Dysautonomia Who gets dysautonomia? Researchers have discovered a genetic predisposition toward developing dysautonomia conditions. A genetic predisposition does not mean that everyone in that family is destined to develop the conditions. Childhood dysautonomia conditions typically (but not always) strike adolescents after the onset of puberty, often after a period of very rapid growth. There is a female to male ratio of fi ve to one. Some of the patients report a sudden development of symptoms after a viral illness, immunization or trauma. Others may see a more gradual onset. Although very rare, children may be born with serious non-familial forms of dysautonomia. There is also a distinctive form of dysautonomia called Familial Dysautonomia (FD) that has been identifi ed in individuals of Ashkenazi Jewish descent. Symptoms: -tachycardia (fast heart rate) -bradycardia (slow heart rate) -orthostatic hypotension (low blood pressure when upright) -orthostatic intolerance (the inability to remain in an upright position) -syncope and near syncope (fainting) -severe dizziness -excessive fatigue -exercise intolerance
-migraines -gastrointestinal issues -nausea -insomnia -shortness of breath -thermoregulatory issues
-anxiety -tremulousness -frequent urination -cognitive impairment (brain fog) -visual blurring or tunneling -seizures

Impact:

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The child can appear to be as healthy as other children. The manifestations occur internally, and although the symptoms are quantifi able and verifi able medically, they often are not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination and may vary in severity (wax and wane). Often patients become more symptomatic after a stressor or activity. Patients may fi nd themselves involuntarily limiting their lifestyle activities in order to compensate for their conditions. Symptoms can sometimes be so severe that some children may require placement in homebound teaching programs for health impaired students; others will be able to attend school, often with modifi cations in their educational plans. The social isolation experienced by not being able to attend school or community activities is one of the hardest things for these children to deal with. Since youth with dysautonomia are usually normal in appearance, it can be a hard condition for people to understand. Even general physicians sometimes miss the clues leading to a proper diagnosis. Families often fi nd themselves desperately traveling great distances to the few pediatric dysautonomia specialists throughout the country for a proper diagnosis and innovative treatment. The fi nancial burden placed upon these families is often signifi cant. Chronic illness counseling is at times recommended to help the patients and their families deal with the impact of the conditions on their lives.

Treatment:

Treatment is based on the condition, the sub-type and the patient specifics. Treatment often includes pharmacological and non-pharmacological methods. Fluid intake of two liters a day, along with an increased sodium intake is often recommended to help increase the patient’s blood volume. Various medications are commonly utilized and each is fine tuned to the particular patient. Medications will also typically require ongoing adaptations as the patient physiologically develops and changes. The hope is to be able to obtain enough symptom relief to initiate a gentle reconditioning program.

Prognosis:

There is limited data on the prognosis of children affl icted with these conditions; however, research is being carried out at the nation’s leading medical institutions. The statistics demonstrate that a good number of affl icted children will improve signifi - cantly by the time they reach their early to mid 20s. Patients who do not fully recover will often see an improvement in their symptoms with proper medical management and upon reaching full growth maturity. Some patients will experience exacerbations of symptoms at various times throughout their lives. What the public needs to know: Children who have dysautonomia struggle with some of the most basic functions that healthy people take for granted, beginning with getting out of bed in the morning. Each day and each moment brings new and unexpected obstacles. Yet, young individuals with dysautonomia face each day with profound courage and incredible strength, despite the betrayal of an uncooperative body. Dysautonomia conditions are widely unknown. Because of this, there exists a shocking ignorance about the lifestyle impact on these young people and their families. What dysautonomia patients need most is support, understanding and encouragement to help them deal with this complex, debilitating and poorly understood group of disorders.

What is dysautonomia?

Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of our bodies, including our cardiovascular system, gastrointestinal system, metabolic system and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose signifi cant challenges for effective medical treatment. Orthostatic intolerance (the inability to remain standing) is a hallmark of the various forms of dysautonomia. Dysautonomia conditions can range from mild to debilitating and, on rare occasions, can even be life threatening. Each dysautonomia case is unique and treatment must be individualized. Patients should be evaluated by a physician who is well-versed on the recent treatment methods. How is it diagnosed? To diagnose dysautonomia, a tilt-table test is usually performed. This test evaluates how the patient regulates blood pressure in response to simple stresses. Tilt-table testing involves placing the patient on a special table with a foot-support. The table is tilted upward while various machines monitor blood pressure, electrical impulses in the heart and oxygen levels. The following diagnostic terms may be issued to children with forms of dysautonomia: •Postural Orthostatic Tachycardia Syndrome (POTS) •Neurocardiogenic Syncope (NCS) •Neurally Mediated Hypotension (NMH) •Vasovagal Syncope •Post-Viral Dysautonomia •Familial Dysautonomia •Non-Familial Dysautonomia •Generalized Dysautonomia Who gets dysautonomia? Researchers have discovered a genetic predisposition toward developing dysautonomia conditions. A genetic predisposition does not mean that everyone in that family is destined to develop the conditions. Childhood dysautonomia conditions typically (but not always) strike adolescents after the onset of puberty, often after a period of very rapid growth. There is a female to male ratio of fi ve to one. Some of the patients report a sudden development of symptoms after a viral illness, immunization or trauma. Others may see a more gradual onset. Although very rare, children may be born with serious non-familial forms of dysautonomia. There is also a distinctive form of dysautonomia called Familial Dysautonomia (FD) that has been identifi ed in individuals of Ashkenazi Jewish descent. Symptoms: -tachycardia (fast heart rate) -bradycardia (slow heart rate) -orthostatic hypotension (low blood pressure when upright) -orthostatic intolerance (the inability to remain in an upright position) -syncope and near syncope (fainting) -severe dizziness -excessive fatigue -exercise intolerance
-migraines -gastrointestinal issues -nausea -insomnia -shortness of breath -thermoregulatory issues
-anxiety -tremulousness -frequent urination -cognitive impairment (brain fog) -visual blurring or tunneling -seizures

Impact:

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The child can appear to be as healthy as other children. The manifestations occur internally, and although the symptoms are quantifi able and verifi able medically, they often are not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination and may vary in severity (wax and wane). Often patients become more symptomatic after a stressor or activity. Patients may fi nd themselves involuntarily limiting their lifestyle activities in order to compensate for their conditions. Symptoms can sometimes be so severe that some children may require placement in homebound teaching programs for health impaired students; others will be able to attend school, often with modifi cations in their educational plans. The social isolation experienced by not being able to attend school or community activities is one of the hardest things for these children to deal with. Since youth with dysautonomia are usually normal in appearance, it can be a hard condition for people to understand. Even general physicians sometimes miss the clues leading to a proper diagnosis. Families often fi nd themselves desperately traveling great distances to the few pediatric dysautonomia specialists throughout the country for a proper diagnosis and innovative treatment. The fi nancial burden placed upon these families is often signifi cant. Chronic illness counseling is at times recommended to help the patients and their families deal with the impact of the conditions on their lives.

Treatment:

Treatment is based on the condition, the sub-type and the patient specifics. Treatment often includes pharmacological and non-pharmacological methods. Fluid intake of two liters a day, along with an increased sodium intake is often recommended to help increase the patient’s blood volume. Various medications are commonly utilized and each is fine tuned to the particular patient. Medications will also typically require ongoing adaptations as the patient physiologically develops and changes. The hope is to be able to obtain enough symptom relief to initiate a gentle reconditioning program.

Prognosis:

There is limited data on the prognosis of children affl icted with these conditions; however, research is being carried out at the nation’s leading medical institutions. The statistics demonstrate that a good number of affl icted children will improve signifi - cantly by the time they reach their early to mid 20s. Patients who do not fully recover will often see an improvement in their symptoms with proper medical management and upon reaching full growth maturity. Some patients will experience exacerbations of symptoms at various times throughout their lives. What the public needs to know: Children who have dysautonomia struggle with some of the most basic functions that healthy people take for granted, beginning with getting out of bed in the morning. Each day and each moment brings new and unexpected obstacles. Yet, young individuals with dysautonomia face each day with profound courage and incredible strength, despite the betrayal of an uncooperative body. Dysautonomia conditions are widely unknown. Because of this, there exists a shocking ignorance about the lifestyle impact on these young people and their families. What dysautonomia patients need most is support, understanding and encouragement to help them deal with this complex, debilitating and poorly understood group of disorders.

What is dysautonomia?

Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of our bodies, including our cardiovascular system, gastrointestinal system, metabolic system and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose signifi cant challenges for effective medical treatment. Orthostatic intolerance (the inability to remain standing) is a hallmark of the various forms of dysautonomia. Dysautonomia conditions can range from mild to debilitating and, on rare occasions, can even be life threatening. Each dysautonomia case is unique and treatment must be individualized. Patients should be evaluated by a physician who is well-versed on the recent treatment methods. How is it diagnosed? To diagnose dysautonomia, a tilt-table test is usually performed. This test evaluates how the patient regulates blood pressure in response to simple stresses. Tilt-table testing involves placing the patient on a special table with a foot-support. The table is tilted upward while various machines monitor blood pressure, electrical impulses in the heart and oxygen levels. The following diagnostic terms may be issued to children with forms of dysautonomia: •Postural Orthostatic Tachycardia Syndrome (POTS) •Neurocardiogenic Syncope (NCS) •Neurally Mediated Hypotension (NMH) •Vasovagal Syncope •Post-Viral Dysautonomia •Familial Dysautonomia •Non-Familial Dysautonomia •Generalized Dysautonomia Who gets dysautonomia? Researchers have discovered a genetic predisposition toward developing dysautonomia conditions. A genetic predisposition does not mean that everyone in that family is destined to develop the conditions. Childhood dysautonomia conditions typically (but not always) strike adolescents after the onset of puberty, often after a period of very rapid growth. There is a female to male ratio of fi ve to one. Some of the patients report a sudden development of symptoms after a viral illness, immunization or trauma. Others may see a more gradual onset. Although very rare, children may be born with serious non-familial forms of dysautonomia. There is also a distinctive form of dysautonomia called Familial Dysautonomia (FD) that has been identifi ed in individuals of Ashkenazi Jewish descent. Symptoms: -tachycardia (fast heart rate) -bradycardia (slow heart rate) -orthostatic hypotension (low blood pressure when upright) -orthostatic intolerance (the inability to remain in an upright position) -syncope and near syncope (fainting) -severe dizziness -excessive fatigue -exercise intolerance
-migraines -gastrointestinal issues -nausea -insomnia -shortness of breath -thermoregulatory issues
-anxiety -tremulousness -frequent urination -cognitive impairment (brain fog) -visual blurring or tunneling -seizures

Impact:

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The child can appear to be as healthy as other children. The manifestations occur internally, and although the symptoms are quantifi able and verifi able medically, they often are not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination and may vary in severity (wax and wane). Often patients become more symptomatic after a stressor or activity. Patients may fi nd themselves involuntarily limiting their lifestyle activities in order to compensate for their conditions. Symptoms can sometimes be so severe that some children may require placement in homebound teaching programs for health impaired students; others will be able to attend school, often with modifi cations in their educational plans. The social isolation experienced by not being able to attend school or community activities is one of the hardest things for these children to deal with. Since youth with dysautonomia are usually normal in appearance, it can be a hard condition for people to understand. Even general physicians sometimes miss the clues leading to a proper diagnosis. Families often fi nd themselves desperately traveling great distances to the few pediatric dysautonomia specialists throughout the country for a proper diagnosis and innovative treatment. The fi nancial burden placed upon these families is often signifi cant. Chronic illness counseling is at times recommended to help the patients and their families deal with the impact of the conditions on their lives.

Treatment:

Treatment is based on the condition, the sub-type and the patient specifics. Treatment often includes pharmacological and non-pharmacological methods. Fluid intake of two liters a day, along with an increased sodium intake is often recommended to help increase the patient’s blood volume. Various medications are commonly utilized and each is fine tuned to the particular patient. Medications will also typically require ongoing adaptations as the patient physiologically develops and changes. The hope is to be able to obtain enough symptom relief to initiate a gentle reconditioning program.

Prognosis:

There is limited data on the prognosis of children affl icted with these conditions; however, research is being carried out at the nation’s leading medical institutions. The statistics demonstrate that a good number of affl icted children will improve signifi - cantly by the time they reach their early to mid 20s. Patients who do not fully recover will often see an improvement in their symptoms with proper medical management and upon reaching full growth maturity. Some patients will experience exacerbations of symptoms at various times throughout their lives. What the public needs to know: Children who have dysautonomia struggle with some of the most basic functions that healthy people take for granted, beginning with getting out of bed in the morning. Each day and each moment brings new and unexpected obstacles. Yet, young individuals with dysautonomia face each day with profound courage and incredible strength, despite the betrayal of an uncooperative body. Dysautonomia conditions are widely unknown. Because of this, there exists a shocking ignorance about the lifestyle impact on these young people and their families. What dysautonomia patients need most is support, understanding and encouragement to help them deal with this complex, debilitating and poorly understood group of disorders.

Dysautonomia

Disorder of the autonomic nervous system.
The autonomic nervous system is the "automatic" or "unconscious" nervous system. It controls and regulates virtually all of our body functions and systems, such as blood pressure, pulse, body temperature, breathing, sweating, bowel function and sleep patterns. The autonomic nervous system is made up of two parts: the sympathetic nervous system tends to increase and accelerate or speed up body functions, the parasympathetic nervous system tends to slow down, relax, and put the breaks on body functions. In a normal situation, the two divisions of the autonomic nervous system work together to control these functions in a continuous manner reacting normally to stimulus.

When the autonomic nervous system becomes "out of balance," it is similar to a car that needs a tune-up. When this occurs, these body functions may either speed up or slow down at inappropriate times with a very noticeable effect on the person. This may occur for no apparent reason. You may be sitting quietly at home reading or watching television, driving down the highway or shopping for groceries in a store. The autonomic nervous system suddenly decides to send out a burst of signals to speed up all body processes. When this occurs the symptoms may be extremely severe and frightening. This faulty regulation of the autonomic system is referred to as "dysautonomia." It may also occur as a response to stress whether it be emotional or physical. Such things as a severe illness, job stress, family problems, buying or building a house, a move cross country, going off to college, having a child and similar type occurrences in our life may trigger the autonomic system to react inappropriately. While these symptoms are extremely frightening, frustrating and uncomfortable, it is not life threatening. However, if left untreated, it may become lifestyle threatening.
Most patients who suffer from mitral valve prolapse syndrome will have dysautonomia as the cause of their symptoms. It is likely that mitral valve prolapse is not the cause of what is going on but the autonomic imbalance or dysautonomia is the actual cause. Why these two things occur together is not entirely clear. IN some cases it is also related to faulty regulation of the body's fluid balance. In other words, patients with this condition generally have a lower than normal blood volume or amount of fluid that circulates through the arteries and veins of the body. This may result in symptoms of dizziness, lightheadedness and low blood pressure. Many times the blood pressure will drop upon standing or arising suddenly from a seated position.
In order to treat the symptoms of this condition it is necessary to understand the autonomic nervous system and why it is working improperly and take appropriate steps to correct these abnormalities.

Things that tend to aggravate dysautonomia include: medications such as over the counter sinus and cold medications, caffeine (whether it be coffee, tea, chocolate, etc.), anything that drops blood volume (such as becoming anemic or sudden blood loss, and other stresses such as illnesses. We also know that at times becoming deconditioned can lead to dysautonomia. Prolonged bed rest following surgery, breaking a leg or something similar can cause dysautonomia. The astronauts who participate in prolonged space shuttle missions tend to exhibit symptoms and physical findings of dysautonomia. Some of the findings and treatment for this condition have been the result of recent research done in connection with the space program.

In summary, mitral valve prolapse may occur alone with no symptoms whatsoever in many patients. Some patients may exhibit only cardiac symptoms, such as an irregular or racing heart beat. Most patients who do not exhibit symptoms of mitral valve prolapse syndrome actually are experiencing dysautonomia. Understanding dysautonomia and its effect on the body and the appropriate ways to treat it will lead to proper methods of clearing up this condition.

Dysautonomia

Disorder of the autonomic nervous system.
The autonomic nervous system is the "automatic" or "unconscious" nervous system. It controls and regulates virtually all of our body functions and systems, such as blood pressure, pulse, body temperature, breathing, sweating, bowel function and sleep patterns. The autonomic nervous system is made up of two parts: the sympathetic nervous system tends to increase and accelerate or speed up body functions, the parasympathetic nervous system tends to slow down, relax, and put the breaks on body functions. In a normal situation, the two divisions of the autonomic nervous system work together to control these functions in a continuous manner reacting normally to stimulus.

When the autonomic nervous system becomes "out of balance," it is similar to a car that needs a tune-up. When this occurs, these body functions may either speed up or slow down at inappropriate times with a very noticeable effect on the person. This may occur for no apparent reason. You may be sitting quietly at home reading or watching television, driving down the highway or shopping for groceries in a store. The autonomic nervous system suddenly decides to send out a burst of signals to speed up all body processes. When this occurs the symptoms may be extremely severe and frightening. This faulty regulation of the autonomic system is referred to as "dysautonomia." It may also occur as a response to stress whether it be emotional or physical. Such things as a severe illness, job stress, family problems, buying or building a house, a move cross country, going off to college, having a child and similar type occurrences in our life may trigger the autonomic system to react inappropriately. While these symptoms are extremely frightening, frustrating and uncomfortable, it is not life threatening. However, if left untreated, it may become lifestyle threatening.
Most patients who suffer from mitral valve prolapse syndrome will have dysautonomia as the cause of their symptoms. It is likely that mitral valve prolapse is not the cause of what is going on but the autonomic imbalance or dysautonomia is the actual cause. Why these two things occur together is not entirely clear. IN some cases it is also related to faulty regulation of the body's fluid balance. In other words, patients with this condition generally have a lower than normal blood volume or amount of fluid that circulates through the arteries and veins of the body. This may result in symptoms of dizziness, lightheadedness and low blood pressure. Many times the blood pressure will drop upon standing or arising suddenly from a seated position.
In order to treat the symptoms of this condition it is necessary to understand the autonomic nervous system and why it is working improperly and take appropriate steps to correct these abnormalities.

Things that tend to aggravate dysautonomia include: medications such as over the counter sinus and cold medications, caffeine (whether it be coffee, tea, chocolate, etc.), anything that drops blood volume (such as becoming anemic or sudden blood loss, and other stresses such as illnesses. We also know that at times becoming deconditioned can lead to dysautonomia. Prolonged bed rest following surgery, breaking a leg or something similar can cause dysautonomia. The astronauts who participate in prolonged space shuttle missions tend to exhibit symptoms and physical findings of dysautonomia. Some of the findings and treatment for this condition have been the result of recent research done in connection with the space program.

In summary, mitral valve prolapse may occur alone with no symptoms whatsoever in many patients. Some patients may exhibit only cardiac symptoms, such as an irregular or racing heart beat. Most patients who do not exhibit symptoms of mitral valve prolapse syndrome actually are experiencing dysautonomia. Understanding dysautonomia and its effect on the body and the appropriate ways to treat it will lead to proper methods of clearing up this condition.

Dysautonomia

Disorder of the autonomic nervous system.
The autonomic nervous system is the "automatic" or "unconscious" nervous system. It controls and regulates virtually all of our body functions and systems, such as blood pressure, pulse, body temperature, breathing, sweating, bowel function and sleep patterns. The autonomic nervous system is made up of two parts: the sympathetic nervous system tends to increase and accelerate or speed up body functions, the parasympathetic nervous system tends to slow down, relax, and put the breaks on body functions. In a normal situation, the two divisions of the autonomic nervous system work together to control these functions in a continuous manner reacting normally to stimulus.

When the autonomic nervous system becomes "out of balance," it is similar to a car that needs a tune-up. When this occurs, these body functions may either speed up or slow down at inappropriate times with a very noticeable effect on the person. This may occur for no apparent reason. You may be sitting quietly at home reading or watching television, driving down the highway or shopping for groceries in a store. The autonomic nervous system suddenly decides to send out a burst of signals to speed up all body processes. When this occurs the symptoms may be extremely severe and frightening. This faulty regulation of the autonomic system is referred to as "dysautonomia." It may also occur as a response to stress whether it be emotional or physical. Such things as a severe illness, job stress, family problems, buying or building a house, a move cross country, going off to college, having a child and similar type occurrences in our life may trigger the autonomic system to react inappropriately. While these symptoms are extremely frightening, frustrating and uncomfortable, it is not life threatening. However, if left untreated, it may become lifestyle threatening.
Most patients who suffer from mitral valve prolapse syndrome will have dysautonomia as the cause of their symptoms. It is likely that mitral valve prolapse is not the cause of what is going on but the autonomic imbalance or dysautonomia is the actual cause. Why these two things occur together is not entirely clear. IN some cases it is also related to faulty regulation of the body's fluid balance. In other words, patients with this condition generally have a lower than normal blood volume or amount of fluid that circulates through the arteries and veins of the body. This may result in symptoms of dizziness, lightheadedness and low blood pressure. Many times the blood pressure will drop upon standing or arising suddenly from a seated position.
In order to treat the symptoms of this condition it is necessary to understand the autonomic nervous system and why it is working improperly and take appropriate steps to correct these abnormalities.

Things that tend to aggravate dysautonomia include: medications such as over the counter sinus and cold medications, caffeine (whether it be coffee, tea, chocolate, etc.), anything that drops blood volume (such as becoming anemic or sudden blood loss, and other stresses such as illnesses. We also know that at times becoming deconditioned can lead to dysautonomia. Prolonged bed rest following surgery, breaking a leg or something similar can cause dysautonomia. The astronauts who participate in prolonged space shuttle missions tend to exhibit symptoms and physical findings of dysautonomia. Some of the findings and treatment for this condition have been the result of recent research done in connection with the space program.

In summary, mitral valve prolapse may occur alone with no symptoms whatsoever in many patients. Some patients may exhibit only cardiac symptoms, such as an irregular or racing heart beat. Most patients who do not exhibit symptoms of mitral valve prolapse syndrome actually are experiencing dysautonomia. Understanding dysautonomia and its effect on the body and the appropriate ways to treat it will lead to proper methods of clearing up this condition.