Report from Nat'l Dysautonomia Conference/ Must read for those with NMH or Orthostatic Intolerance

Discussion in 'Fibromyalgia Main Forum' started by teach6, Oct 2, 2002.

  1. teach6

    teach6 New Member

    This came from my local support group.

    Barbara

    The National Dysautonomia Research Foundation held a patient conference
    from July 18-21, 2002 in Washington DC. Patients from around the nation
    gathered to hear specialists and researchers speak. Dysautonomia is a broad
    term for disorders of the autonomic nervous system. The cause is not well
    understood. Various forms of dysautonomia have been shown in studies of both
    Chronic Fatigue Syndrome and Fibromyalgia. The autonomic nervous system is
    responsible for a host of things, including blood flow to the brain,
    regulating body temperature, energy production and waste removal. The
    autonomic nervous system includes the sympathetic, parasympathetic and
    enteric nervous systems. The autonomic nervous system works by releasing
    messenger chemicals inside the body. Chemicals released by nerve terminals in
    body organs are called neurotransmitters. Chemicals released into the
    bloodstream are called hormones. One key hormone is adrenaline. It is
    released by the adrenal gland located just above your kidney. This hormone
    has a major role in our fight or flight fear response. There are also two key
    neurotransmitters of the autonomic nervous system. They are acetylcholine and
    norepinephrine. I know this all seems a bit confusing, but a brief overview
    of the autonomic nervous system will help you better understand dysautonomia.


    Now let me try to define some of the dysautonomias. In orthostatic
    hypotension (oh) a patient experiences a 20 point (millimeters) or larger
    fall in blood pressure when the patient stands up. This inability to tolerate
    standing is also known as orthostatic intolerance (OI). People may experience
    dizziness, nausea and heat intolerance. Prolonged bed rest makes OI worse.
    Even healthy people will develop orthostatic intolerance symptoms if forced
    to remain in a flat position for extended periods. As hard as it may be,
    patients should move as much as possible. Heavy menstrual cycles and bleeding
    ulcers can also make OI worse.


    Another condition is called postural orthostatic tachycardia syndrome or
    POTS. In POTS there is an excessive increase in pulse rate during standing.
    POTS patients experience a batch of other symptoms, which may include chest
    pain, migraine- like headaches and pain in the back of the neck or shoulders.
    Females get POTS five times as often as men. POTS patients can have the
    tachycardia (fast heart rate) and have no Hypotension (low blood pressure)
    but, they can have BOTH!


    There are many names for these conditions and many of the names are
    inter-changeable. I would like to add one more. Neurocardiogenic Syncope
    (NCS). Syncope is a fancy term for fainting. It can also be called vasovagal
    syncope and neurally mediated syncope. You do not actually have to faint to
    have any of these conditions, but many people do lose consciousness.

    OI, POTS and syncope patients sometimes have low blood volume. Patients
    show a decrease in the amount of blood returning to the heart. Blood pooling
    in the legs can also cause pain. Blood volume studies have also shown a
    lower number of circulating red blood cells in Chronic Fatigue Syndrome
    patients.

    There are many medical tests you can have to determine if you have one
    of the dysautonomias mentioned. The first test many patients have is a
    tilt table test. Patients are strapped onto a table and they are tilted
    upright. The exact angle of the table varies from 60-90 degrees depending on
    who is administering the test. The test looks at your body's ability to
    tolerate standing up.

    In the Valsalva Maneuver a patient blows against resistance for several
    seconds and then relaxes. Some patients show decrease of blood ejection
    (exit) from the heart in this test.

    In the (FBF) forearm blood flow test, a blood pressure cuff is attached
    around the upper arm with a device called a strain gauge. Measurement of a
    limb diameter can be very useful to show how much stretch and blood is in the
    extremity.

    The sweat test shows body temperature regulation. Starch with an iodine
    powder is sprinkled all over your body. When the powder turns brown you can
    see which body parts have sweated. When skin becomes sweaty the ability to
    conduct electricity increases. There is also a special form of a sweat test
    called QSART. This test is based on the ability of certain drugs to evoke
    sweating.

    In the cold pressor test a patient dunks a hand into ice cold water.
    This rapidly increases blood pressure by increasing activity of the
    sympathetic nervous system.

    In the trimethaphan infusion test, the drug Trimethaphan is a ganglion
    blocker. It is given by vein to examine blood pressure.

    In the yohimbine challenge test the drug Yohimbine is given and the
    effect on blood pressure and plasma levels of chemicals such as
    norepinephrine are studied. Since many side effects are common, this test
    should be done with caution.


    A clonidine suppression test is used in many patients to examine blood
    pressure. Clonidine decreases blood pressure. An oral dose is given and then
    plasma norepinephrine levels are measured through blood tests.

    An isoproterenol infusion test is sometimes given at the end stage of a
    tilt table test, or to measure heart rate increase, and force of the
    heartbeat. It sometimes can identify the cause of abnormal heart rates.

    There are many neurochemical tests. They include plasma norepineephrine
    levels and plasma epinephrine (adrenaline) levels.

    Neuroimaging tests are relatively new and very interesting. In these
    tests, physicians can actually see the nerves in organs such as the heart.
    Radioactive drugs are used and then doctors use a PET scan to look at the
    sympathetic nervous system. This is groundbreaking and done mostly in
    research settings.


    There were so many treatments discussed at the conference. Let me make
    it clear that there is not one treatment for everyone. Let me start by
    discussing some therapies that do not involve drugs. The first and most often
    talked about treatment is water! Drink, drink and drink some more. When you
    are thirsty it is already too late and you are dehydrated. If you quickly
    drink 16 ounces of water, in the span of an hour you will begin to start
    losing the water. Carry a water bottle and drink throughout the day. Water
    helps keep volume up.

    Elevate the head of your bed at night when you sleep. Some patients use
    a wedge shaped pillow. I have even seen patients put bricks under the top of
    their mattress.

    Many patients notice an improvement with a high salt diet. Salt
    increases the volume of fluid in the body. It is best to get your salt intake
    from food instead of tablets, which can irritate your stomach. There are many
    healthy salt choices, such as pickles and V8 vegetable juice. Some patients
    have benefited from intravenous saline, but in many cases the benefit is
    temporary.


    When it comes to meals, smaller is better. It is best to eat small meals
    rather than heavy large ones. A large meal is hard to digest and blood pools
    in the gut after eating a large meal.

    The people in attendance who looked dreadfully uncomfortable were
    probably wearing compression hose. There are many compression stockings and
    support hose on the market. In many cases your doctor can write a
    prescription for the hose. One of the most popular is Jobst stockings. These
    stockings tend to decrease the amount of pooling in the feet and legs. They
    can be very tight and warm and hard to put on. A cheap alternative may be
    buying pantyhose several sizes too small. Also buy control top to help
    abdominal pooling. There is no reason a man can't try the pantyhose under
    clothing. With long pants and socks who would see them. Many catalogs sell
    circulation gadgets. The 'Feel Good' catalog sells compression boots.
    Astronaut pants and medical anti-shock trousers (Mast trousers) can also be
    found online. Some patients who wear tight, closed toe, pump shoes have also
    been helped from the squeezing of the toes.


    Patients with dysautonomia are often very temperature sensitive. When
    you are trying to keep volume in, sweating is bad. Although it may be very
    annoying to family members, try to keep your home thermostat at a temperature
    comfortable to you. Avoid activity in the hottest times of the day. There are
    many catalogs with products that help cool down the body. I use a neck wrap
    from 'Body Cooler' that is like a frozen bandana I wear around my neck. There
    are also many companies that make cooling vests.

    Finding an effective drug therapy can be a very frustrating task.
    Finding the specific medication that works for you can be very difficult. In
    many cases it takes combinations of drugs at varying doses.

    The first drug often tried is fludrocortisone (Florinef). It is a salt
    retaining steroid. Florinef must be taken with a high salt diet and potassium
    to work. Patients gain fluid weight and their blood pressure can increase.
    Those with high blood pressure should be cautious with Florinef.


    Beta blockers are often used to decrease the rate and force of the
    heartbeat. There are many beta blockers that can be tried; they include
    propranolol (Inderal) nadolol (Corgard) timolol (Blocodren) atenolol
    (Tenormin) metoprolol (Toprol) and betaxolol (Kerlone). Many beta blockers
    can cause increased fatigue. The use of beta blockers is really a trial and
    error proposal. You will have to work closely with your doctor to find out
    what is best for you.

    A drug that is being closely studied is Midodrine (proamatine). It is a
    drug that tightens blood vessels (vasoconstrictor) throughout the body.
    Midodrine acts like an artificial form of norepinephrine, increasing blood
    pressure.


    Clonidine can be tried in patients with high blood pressure. It
    decreases the release of norepinephrine and can decrease blood pressure in
    some patients.

    Yohimbine can also be used to increase blood pressure. Be careful of
    yohimbe bark. It is a natural form available in health food stores. Since
    herbal remedies are often not regulated caution should be taken.

    A class of drugs called amphetamines can increase blood pressure. They
    are often used to increase attention and decrease appetite. Some of them
    include Pseudephedrine and Ritalin.

    SSRI'S (selective serotonin reuptake inhibitors such as Prozac and
    Zoloft are often used for a variety of conditions including depression and
    anxiety. They have also been shown to be helpful in some cases of
    dysautonomia.

    Procrit (erythropoietin) is a hormone used to increase the production of
    red blood cells. It is helpful in patients with a low red blood cell count.
    It is given in injection form and is very expensive.

    Bethanecol (urecholine) can be used in patients with constipation and
    urinary retention. It increases muscle tone of the bladder.


    Now let me introduce you to some of the researchers who spoke at the
    conference. Many of them have autonomic labs that are doing groundbreaking
    research. One of the speakers was Dr. David Robertson. He is the Director of
    the Clinical Research Center at Vanderbilt University in Nashville Tennessee.
    His group has identified previously unrecognized genetic diseases such as
    dopamine-beta-hydroxylase deficiency and the norepinephrine transporter
    deficiency. His current research aims to identify pathophysiologic mechanisms
    in orthostatic intolerance syndromes. His talk on genetics was just
    fascinating. He showed that we are all truly related, tracing one gene back
    in time. He is also doing research on family history. During the question and
    answer section Dr. Robertson said that he does not usually recommend
    pacemakers for patients. He also said that a simple urine test can measure
    how much sodium you have in your body. It is just a simple urine stick dip.
    He also mentioned that OI and POTS patients are not more likely to have a
    stroke or a heart attack than healthy subjects. The subject of coffee and
    Caffeine had a very mixed response. The bottom line is that if you can
    tolerate it, drink it. If the energy boost leads to a crash, then eliminate
    it. He also said that flying in high altitudes can be very difficult for many
    patients as blood pools as the altitude increases, and you sit still.


    Dr. David Goldstein from the National Institute of Neurological
    Disorders and Stroke (NINDS) spoke on neurotransmitters and the autonomic
    nervous system. Many of the tests mentioned earlier in this article are done
    at his laboratory. His research focuses on the catecholamine systems. In his
    lab he has looked at various patient population groups. He quotes 60 percent
    of Chronic Fatigue Syndrome patients have OI or POTS according to various
    published studies.


    Dr. Blair Grubb is a professor of medicine and pediatrics at the Medical
    College of Ohio. His practice sees both children and adults. Dr. Grubb's
    talks really helped me understand the workings of blood pressure regulation.
    The central nervous system is made up of the heart and spinal cord. Your
    diastolic blood pressure is recorded as the lower number in a blood pressure
    reading. This is your blood pressure when your heart relaxes after a heart
    beat. Systolic blood pressure is your blood pressure when your heart
    contracts during a heartbeat. This is recorded as the upper number in a blood
    pressure read out. Many patients at the conference had this nifty heart rate
    watch. A company named Polar makes them. They can be purchased at many sports
    merchandise shops. The watches keep a constant monitoring of your heart rate.
    One thing I have learned from Dr. Grubb's lecture is that fainting is just
    one of many symptoms in dysautonomia. Some others include dizziness,
    lightheadedness, exercise intolerance, nausea, fatigue, chest discomfort,
    visual disturbances, weakness, brain fog, mood swings, migraines, weakness in
    legs, bladder dysfunction, impotence, noise and light sensitivity, insomnia
    and temperature regulation problems. This doesn't sound all that dissimilar
    to Chronic Fatigue Syndrome.


    Dr. Philip Low heads the Mayo Clinic Autonomic Reflex laboratory. He
    focuses on autonomic and peripheral nerve disorders. With his colleague at
    the Mayo Clinic they have developed a new antibody test to help diagnose
    autonomic disorders. This is amazing research. They have developed a test
    that will help physicians distinguish autonomic disorders caused by the
    immune system from other autonomic disorders. Your doctor has to ask for the
    Ganglionic Antibody test. This blood test can only be done at the Mayo
    Medical Laboratories. This test will someday help physicians identify
    patients who will respond to immunological treatments.


    Dr. Low also gave a lecture on exercise and physical therapy. First and
    foremost you must keep moving. Cross and uncross your legs when you are
    standing. Stand on your tiptoes when you are forced to stand for a long time.
    Using your leg muscles with resistance training will help return blood to the
    heart. When sitting up, twist your legs like a pretzel. When asked Dr. Low
    said he does not recommend patients getting Chiari 1 malformation surgery.


    Dr. Julian Stewart is a pediatric cardiologist at New York Medical
    College in Valhalla, New York. His research is in cardiac and circulatory
    disease in children. He also studies neurovascular control in adolescents. He
    is currently studying circulation dysfunction in teens with Chronic Fatigue
    Syndrome.


    Dr. Roy Freeman is Associate professor of Neurology at Harvard Medical
    School and Director of the Center for Autonomic nerve disorders at Beth
    Israel Deaconess Medical Center in Boston, Massachusetts. Dr. Freeman studies
    the autonomic nervous system and small fiber peripheral neuropathies. He
    spoke mostly about pure autonomic failure and multiple system atrophy.


    Dr. Cecil Coghlan is a professor of medicine and has an autonomic
    research laboratory at the University of Alabama at Birmingham. He has
    studied autonomic function in mitral valve prolapse Syndrome along with
    orthostatic intolerance and Syncope. His views on orthostatic intolerance can
    be very informative to Chronic Fatigue patients. Dysautonomia can affect
    anyone, any age, or sex. Some women feel better when they are pregnant and
    some feel worse. When your nervous system is excited it is best to quiet it
    down. When convenient it is best to reduce stimuli. Wear sunglasses in bright
    light. Wear eye masks if you don't have to see, as an example, when driving
    in a car as the passenger. Use earplugs when noise bothers you. Mornings can
    be particularly hard. Get out of bed slowly. Take showers at night, not when
    awakening. Take a warm shower instead of a hot one. Get a medical shower
    chair and sit. Avoid alcohol as it dehydrates you.

    The Network
    c/o CT CFIDS & FM Association, Inc.
    PO Box 3010
    Milford CT 06460


    I know this article is quite long and technical. I think it is such a
    shame that the chronic fatigue community and the dysautonomia world don't
    work more closely together. So many of the patients who are diagnosed with
    Chronic Fatigue Syndrome and Fibromyalgia have dysautonomia and don't even
    know it. So many patients at this NDRF conference meet the criteria for
    Chronic Fatigue Syndrome and don't know anything about it. The body is a
    very complicated machine and only by studying all its components are patients
    going to get complete answers. Michelle Lapuk

    [This Message was Edited on 10/02/2002]
    [This Message was Edited on 10/03/2002]
  2. teach6

    teach6 New Member

    This came from my local support group.

    Barbara

    The National Dysautonomia Research Foundation held a patient conference
    from July 18-21, 2002 in Washington DC. Patients from around the nation
    gathered to hear specialists and researchers speak. Dysautonomia is a broad
    term for disorders of the autonomic nervous system. The cause is not well
    understood. Various forms of dysautonomia have been shown in studies of both
    Chronic Fatigue Syndrome and Fibromyalgia. The autonomic nervous system is
    responsible for a host of things, including blood flow to the brain,
    regulating body temperature, energy production and waste removal. The
    autonomic nervous system includes the sympathetic, parasympathetic and
    enteric nervous systems. The autonomic nervous system works by releasing
    messenger chemicals inside the body. Chemicals released by nerve terminals in
    body organs are called neurotransmitters. Chemicals released into the
    bloodstream are called hormones. One key hormone is adrenaline. It is
    released by the adrenal gland located just above your kidney. This hormone
    has a major role in our fight or flight fear response. There are also two key
    neurotransmitters of the autonomic nervous system. They are acetylcholine and
    norepinephrine. I know this all seems a bit confusing, but a brief overview
    of the autonomic nervous system will help you better understand dysautonomia.


    Now let me try to define some of the dysautonomias. In orthostatic
    hypotension (oh) a patient experiences a 20 point (millimeters) or larger
    fall in blood pressure when the patient stands up. This inability to tolerate
    standing is also known as orthostatic intolerance (OI). People may experience
    dizziness, nausea and heat intolerance. Prolonged bed rest makes OI worse.
    Even healthy people will develop orthostatic intolerance symptoms if forced
    to remain in a flat position for extended periods. As hard as it may be,
    patients should move as much as possible. Heavy menstrual cycles and bleeding
    ulcers can also make OI worse.


    Another condition is called postural orthostatic tachycardia syndrome or
    POTS. In POTS there is an excessive increase in pulse rate during standing.
    POTS patients experience a batch of other symptoms, which may include chest
    pain, migraine- like headaches and pain in the back of the neck or shoulders.
    Females get POTS five times as often as men. POTS patients can have the
    tachycardia (fast heart rate) and have no Hypotension (low blood pressure)
    but, they can have BOTH!


    There are many names for these conditions and many of the names are
    inter-changeable. I would like to add one more. Neurocardiogenic Syncope
    (NCS). Syncope is a fancy term for fainting. It can also be called vasovagal
    syncope and neurally mediated syncope. You do not actually have to faint to
    have any of these conditions, but many people do lose consciousness.

    OI, POTS and syncope patients sometimes have low blood volume. Patients
    show a decrease in the amount of blood returning to the heart. Blood pooling
    in the legs can also cause pain. Blood volume studies have also shown a
    lower number of circulating red blood cells in Chronic Fatigue Syndrome
    patients.

    There are many medical tests you can have to determine if you have one
    of the dysautonomias mentioned. The first test many patients have is a
    tilt table test. Patients are strapped onto a table and they are tilted
    upright. The exact angle of the table varies from 60-90 degrees depending on
    who is administering the test. The test looks at your body's ability to
    tolerate standing up.

    In the Valsalva Maneuver a patient blows against resistance for several
    seconds and then relaxes. Some patients show decrease of blood ejection
    (exit) from the heart in this test.

    In the (FBF) forearm blood flow test, a blood pressure cuff is attached
    around the upper arm with a device called a strain gauge. Measurement of a
    limb diameter can be very useful to show how much stretch and blood is in the
    extremity.

    The sweat test shows body temperature regulation. Starch with an iodine
    powder is sprinkled all over your body. When the powder turns brown you can
    see which body parts have sweated. When skin becomes sweaty the ability to
    conduct electricity increases. There is also a special form of a sweat test
    called QSART. This test is based on the ability of certain drugs to evoke
    sweating.

    In the cold pressor test a patient dunks a hand into ice cold water.
    This rapidly increases blood pressure by increasing activity of the
    sympathetic nervous system.

    In the trimethaphan infusion test, the drug Trimethaphan is a ganglion
    blocker. It is given by vein to examine blood pressure.

    In the yohimbine challenge test the drug Yohimbine is given and the
    effect on blood pressure and plasma levels of chemicals such as
    norepinephrine are studied. Since many side effects are common, this test
    should be done with caution.


    A clonidine suppression test is used in many patients to examine blood
    pressure. Clonidine decreases blood pressure. An oral dose is given and then
    plasma norepinephrine levels are measured through blood tests.

    An isoproterenol infusion test is sometimes given at the end stage of a
    tilt table test, or to measure heart rate increase, and force of the
    heartbeat. It sometimes can identify the cause of abnormal heart rates.

    There are many neurochemical tests. They include plasma norepineephrine
    levels and plasma epinephrine (adrenaline) levels.

    Neuroimaging tests are relatively new and very interesting. In these
    tests, physicians can actually see the nerves in organs such as the heart.
    Radioactive drugs are used and then doctors use a PET scan to look at the
    sympathetic nervous system. This is groundbreaking and done mostly in
    research settings.


    There were so many treatments discussed at the conference. Let me make
    it clear that there is not one treatment for everyone. Let me start by
    discussing some therapies that do not involve drugs. The first and most often
    talked about treatment is water! Drink, drink and drink some more. When you
    are thirsty it is already too late and you are dehydrated. If you quickly
    drink 16 ounces of water, in the span of an hour you will begin to start
    losing the water. Carry a water bottle and drink throughout the day. Water
    helps keep volume up.

    Elevate the head of your bed at night when you sleep. Some patients use
    a wedge shaped pillow. I have even seen patients put bricks under the top of
    their mattress.

    Many patients notice an improvement with a high salt diet. Salt
    increases the volume of fluid in the body. It is best to get your salt intake
    from food instead of tablets, which can irritate your stomach. There are many
    healthy salt choices, such as pickles and V8 vegetable juice. Some patients
    have benefited from intravenous saline, but in many cases the benefit is
    temporary.


    When it comes to meals, smaller is better. It is best to eat small meals
    rather than heavy large ones. A large meal is hard to digest and blood pools
    in the gut after eating a large meal.

    The people in attendance who looked dreadfully uncomfortable were
    probably wearing compression hose. There are many compression stockings and
    support hose on the market. In many cases your doctor can write a
    prescription for the hose. One of the most popular is Jobst stockings. These
    stockings tend to decrease the amount of pooling in the feet and legs. They
    can be very tight and warm and hard to put on. A cheap alternative may be
    buying pantyhose several sizes too small. Also buy control top to help
    abdominal pooling. There is no reason a man can't try the pantyhose under
    clothing. With long pants and socks who would see them. Many catalogs sell
    circulation gadgets. The 'Feel Good' catalog sells compression boots.
    Astronaut pants and medical anti-shock trousers (Mast trousers) can also be
    found online. Some patients who wear tight, closed toe, pump shoes have also
    been helped from the squeezing of the toes.


    Patients with dysautonomia are often very temperature sensitive. When
    you are trying to keep volume in, sweating is bad. Although it may be very
    annoying to family members, try to keep your home thermostat at a temperature
    comfortable to you. Avoid activity in the hottest times of the day. There are
    many catalogs with products that help cool down the body. I use a neck wrap
    from 'Body Cooler' that is like a frozen bandana I wear around my neck. There
    are also many companies that make cooling vests.

    Finding an effective drug therapy can be a very frustrating task.
    Finding the specific medication that works for you can be very difficult. In
    many cases it takes combinations of drugs at varying doses.

    The first drug often tried is fludrocortisone (Florinef). It is a salt
    retaining steroid. Florinef must be taken with a high salt diet and potassium
    to work. Patients gain fluid weight and their blood pressure can increase.
    Those with high blood pressure should be cautious with Florinef.


    Beta blockers are often used to decrease the rate and force of the
    heartbeat. There are many beta blockers that can be tried; they include
    propranolol (Inderal) nadolol (Corgard) timolol (Blocodren) atenolol
    (Tenormin) metoprolol (Toprol) and betaxolol (Kerlone). Many beta blockers
    can cause increased fatigue. The use of beta blockers is really a trial and
    error proposal. You will have to work closely with your doctor to find out
    what is best for you.

    A drug that is being closely studied is Midodrine (proamatine). It is a
    drug that tightens blood vessels (vasoconstrictor) throughout the body.
    Midodrine acts like an artificial form of norepinephrine, increasing blood
    pressure.


    Clonidine can be tried in patients with high blood pressure. It
    decreases the release of norepinephrine and can decrease blood pressure in
    some patients.

    Yohimbine can also be used to increase blood pressure. Be careful of
    yohimbe bark. It is a natural form available in health food stores. Since
    herbal remedies are often not regulated caution should be taken.

    A class of drugs called amphetamines can increase blood pressure. They
    are often used to increase attention and decrease appetite. Some of them
    include Pseudephedrine and Ritalin.

    SSRI'S (selective serotonin reuptake inhibitors such as Prozac and
    Zoloft are often used for a variety of conditions including depression and
    anxiety. They have also been shown to be helpful in some cases of
    dysautonomia.

    Procrit (erythropoietin) is a hormone used to increase the production of
    red blood cells. It is helpful in patients with a low red blood cell count.
    It is given in injection form and is very expensive.

    Bethanecol (urecholine) can be used in patients with constipation and
    urinary retention. It increases muscle tone of the bladder.


    Now let me introduce you to some of the researchers who spoke at the
    conference. Many of them have autonomic labs that are doing groundbreaking
    research. One of the speakers was Dr. David Robertson. He is the Director of
    the Clinical Research Center at Vanderbilt University in Nashville Tennessee.
    His group has identified previously unrecognized genetic diseases such as
    dopamine-beta-hydroxylase deficiency and the norepinephrine transporter
    deficiency. His current research aims to identify pathophysiologic mechanisms
    in orthostatic intolerance syndromes. His talk on genetics was just
    fascinating. He showed that we are all truly related, tracing one gene back
    in time. He is also doing research on family history. During the question and
    answer section Dr. Robertson said that he does not usually recommend
    pacemakers for patients. He also said that a simple urine test can measure
    how much sodium you have in your body. It is just a simple urine stick dip.
    He also mentioned that OI and POTS patients are not more likely to have a
    stroke or a heart attack than healthy subjects. The subject of coffee and
    Caffeine had a very mixed response. The bottom line is that if you can
    tolerate it, drink it. If the energy boost leads to a crash, then eliminate
    it. He also said that flying in high altitudes can be very difficult for many
    patients as blood pools as the altitude increases, and you sit still.


    Dr. David Goldstein from the National Institute of Neurological
    Disorders and Stroke (NINDS) spoke on neurotransmitters and the autonomic
    nervous system. Many of the tests mentioned earlier in this article are done
    at his laboratory. His research focuses on the catecholamine systems. In his
    lab he has looked at various patient population groups. He quotes 60 percent
    of Chronic Fatigue Syndrome patients have OI or POTS according to various
    published studies.


    Dr. Blair Grubb is a professor of medicine and pediatrics at the Medical
    College of Ohio. His practice sees both children and adults. Dr. Grubb's
    talks really helped me understand the workings of blood pressure regulation.
    The central nervous system is made up of the heart and spinal cord. Your
    diastolic blood pressure is recorded as the lower number in a blood pressure
    reading. This is your blood pressure when your heart relaxes after a heart
    beat. Systolic blood pressure is your blood pressure when your heart
    contracts during a heartbeat. This is recorded as the upper number in a blood
    pressure read out. Many patients at the conference had this nifty heart rate
    watch. A company named Polar makes them. They can be purchased at many sports
    merchandise shops. The watches keep a constant monitoring of your heart rate.
    One thing I have learned from Dr. Grubb's lecture is that fainting is just
    one of many symptoms in dysautonomia. Some others include dizziness,
    lightheadedness, exercise intolerance, nausea, fatigue, chest discomfort,
    visual disturbances, weakness, brain fog, mood swings, migraines, weakness in
    legs, bladder dysfunction, impotence, noise and light sensitivity, insomnia
    and temperature regulation problems. This doesn't sound all that dissimilar
    to Chronic Fatigue Syndrome.


    Dr. Philip Low heads the Mayo Clinic Autonomic Reflex laboratory. He
    focuses on autonomic and peripheral nerve disorders. With his colleague at
    the Mayo Clinic they have developed a new antibody test to help diagnose
    autonomic disorders. This is amazing research. They have developed a test
    that will help physicians distinguish autonomic disorders caused by the
    immune system from other autonomic disorders. Your doctor has to ask for the
    Ganglionic Antibody test. This blood test can only be done at the Mayo
    Medical Laboratories. This test will someday help physicians identify
    patients who will respond to immunological treatments.


    Dr. Low also gave a lecture on exercise and physical therapy. First and
    foremost you must keep moving. Cross and uncross your legs when you are
    standing. Stand on your tiptoes when you are forced to stand for a long time.
    Using your leg muscles with resistance training will help return blood to the
    heart. When sitting up, twist your legs like a pretzel. When asked Dr. Low
    said he does not recommend patients getting Chiari 1 malformation surgery.


    Dr. Julian Stewart is a pediatric cardiologist at New York Medical
    College in Valhalla, New York. His research is in cardiac and circulatory
    disease in children. He also studies neurovascular control in adolescents. He
    is currently studying circulation dysfunction in teens with Chronic Fatigue
    Syndrome.


    Dr. Roy Freeman is Associate professor of Neurology at Harvard Medical
    School and Director of the Center for Autonomic nerve disorders at Beth
    Israel Deaconess Medical Center in Boston, Massachusetts. Dr. Freeman studies
    the autonomic nervous system and small fiber peripheral neuropathies. He
    spoke mostly about pure autonomic failure and multiple system atrophy.


    Dr. Cecil Coghlan is a professor of medicine and has an autonomic
    research laboratory at the University of Alabama at Birmingham. He has
    studied autonomic function in mitral valve prolapse Syndrome along with
    orthostatic intolerance and Syncope. His views on orthostatic intolerance can
    be very informative to Chronic Fatigue patients. Dysautonomia can affect
    anyone, any age, or sex. Some women feel better when they are pregnant and
    some feel worse. When your nervous system is excited it is best to quiet it
    down. When convenient it is best to reduce stimuli. Wear sunglasses in bright
    light. Wear eye masks if you don't have to see, as an example, when driving
    in a car as the passenger. Use earplugs when noise bothers you. Mornings can
    be particularly hard. Get out of bed slowly. Take showers at night, not when
    awakening. Take a warm shower instead of a hot one. Get a medical shower
    chair and sit. Avoid alcohol as it dehydrates you.

    The Network
    c/o CT CFIDS & FM Association, Inc.
    PO Box 3010
    Milford CT 06460


    I know this article is quite long and technical. I think it is such a
    shame that the chronic fatigue community and the dysautonomia world don't
    work more closely together. So many of the patients who are diagnosed with
    Chronic Fatigue Syndrome and Fibromyalgia have dysautonomia and don't even
    know it. So many patients at this NDRF conference meet the criteria for
    Chronic Fatigue Syndrome and don't know anything about it. The body is a
    very complicated machine and only by studying all its components are patients
    going to get complete answers. Michelle Lapuk

    [This Message was Edited on 10/02/2002]
    [This Message was Edited on 10/03/2002]
  3. teach6

    teach6 New Member

    If you have Neurally Mediated Hypotension/Orthostatic Intolerance/POTS you owe it to yourself to read this. This is ABOUT YOU!!! (and me, too!)

    Barbara
  4. JaciBart

    JaciBart Member

    Thanks for all the great info.

    I am convinced that adrenaline is a problem, I really think that when we go thru a trauma, or as many of is multiple traumas or a lifetime of them as in my case, our adrenal glands get all messed up, also I think my 12 yr benzo taking for anxiety was a contributing factor to this adrenaline up & down thing.

    Anyone agree with me or am I off base?

    Mikie, what do you think?


    Jaci
  5. Mikie

    Mikie Moderator

    Barb, thanks so much for providing this for us. I believe we are seeing more sharing of info between scientific groups which deal in illnesses with overlap, but it's slow going. Traditionally, these groups have all competed for funding and are very protective of their areas of research. Strangely enough, it is the research itself which is starting to show the connections. Hopefully, one of these days, the medical community will lay down its defenses long enough to connect the dots.

    Jaci, more and more, research is finding that the "causes" of our illnesses are probably multi-factorial. There is strong evidence of genetic predisposition, infectious agents, accidents, medications, sleep dysfunction, adrenal imbalance, emotional stress, and trauma. It may turn out that any number of combinations of these factors will produce our illnesses.

    Love, Mikie
  6. JaciBart

    JaciBart Member

    a Nationwide awareness campaign??? Signs in our cars?? Our front windows? Flyers we leave on cars everywhere?? It is just so sickening that we see more & more of these same problems, the numbers are growing but yet mainstream media will not acknowledge it and when they do it is as if we are all hypochondriacs & want to just have an excuse to be lazy.

    Jaci
  7. teach6

    teach6 New Member

    I agree with you about the anxiety because I was also in treatment for it on and off for years. One thing that the autonomic nervous system regulates is adrenaline, so there is definitely a connection.

    (Edited by Moderator)

    Barbara
  8. kadywill

    kadywill New Member

    and it really explains a lot to me about my sweating, anxiety, my oversensivity to stimuli, my panic attacks, my "elimination problems", etc.
    This needs to be bumped so the newbies can read this!!
    Kady
  9. klutzo

    klutzo New Member

    I take the Clonidine HCL for my high blood pressure, and as mentioned in this article, it has helped my dysautonomia as well. I consider dysautonomia to be my major problem. Over the yrs. I've learned to walk a fine line that keeps pain and fatigue at a tolerable level, but the nervous system stuff keeps throwing curve balls at me, and is serious enough that I've never been able to return to work.
    Klutzo
  10. annab

    annab Guest

    Thanks for this. I think I'll take it in and discuss it with my doctor. I've been having trouble convincing him that many of my symptoms are related. But I have noticed that my heart rate, blood pressure, blood sugar, digestive system, and body temperature can all be affected at the same time, or in any combination. Last year, I ended up in the emergency room, I suddenly had mitral valve prolapse, my heart was very arrhythmic, my blood sugar fell extremely low, and my body temperature fell to 93. And my primary care physician tried to force me to believe that there was nothing wrong with me, except "some strange mental illness". When I resisted what he said, (I couldn't argue much because I was too sick to even form whole sentences), he banned both me and my husband from his clinic in writing. I received the letter from him by certified mail a few days later. The people in the emergency accused me of using someone else's insulin to make my blood sugar fall. My blood sugar fell while I was in the emergency room, and I obviously didn't have access to anything that I could harm myself with. But they were so determined not to believe that my illness was real, that they went to great lengths to explain it away. Talk about prejudice. I'm going to carry a copy of this around with me to help me explain it.
    Anna
  11. kadywill

    kadywill New Member

    for the newbies to read...this is very helpful!
    Love,
    Kady
  12. Jasmine

    Jasmine New Member

    I just wanted to add that I have severe Neurally Mediated Hypotension and I have been greatly helped by watercure. I drink half my body weight in tap water and take a half teaspoon of special sea salt divided throughout the day that is recommended on the watercure site. I've been on watercure for over six months now and I have more energy, less breathlessness, and can stay upright longer and I'm better standing in lines too. Watercure has really helped improve my NMH.

    Love, Jasmine
  13. teach6

    teach6 New Member

    Very good point about the water. I also drink a LOT of water every day and always have a water bottle with me when I am out. I read before I was even diagnosed that drinking a lot of water and adding salt to your diet was helpful with NMH.

    Barbara