NDRF is a non profit foundation, established to help those who are afflicted with any of the various forms of Dysautonomia. Our Mission is:.
To provide a support network for afflicted individuals and family members by providing information on the various forms of Dysautonomia, as well as providing contacts to other organizations that may be of assistance.
To provide a Internet home page for afflicted individuals, physicians, and the general public, to use for gaining information on Dysautonomia, as well as provide a reference of physicians and medical facilities that specialize in the research and treatment of Dysautonomia.
To work as advocates for afflicted individuals in support of the ongoing and future research efforts to determine the causes of and treatments for Dysautonomia.
To provide news organizations with timely and accurate information on Dysautonomia.
To provide a newsletter for interested parties on Dysautonomia research, as well as any other information pertaining to the ongoing efforts to find cures for those afflicted by any of the various forms of Dysautonomia.
To raise funds via direct mail and Internet campaign to business, corporate and private individuals for the purpose of providing funds for use in medical and scientific research to diagnose and treat the various forms of Dysautonomia.
The autonomic nervous system manages most of our bodily systems, including the cardiovascular system, gastrointestinal, urinary and bowel functions, temperature regulation, reproduction and our metabloic and endocrine systems. Additionally, this system is responsible for our reaction to stress - the flight or fight response.
When our Autonomic Nervous System malfunctions, it is known as Dysautonomia. Other terminology that is used includes - Autonomic Dysfunction, Autonomic Failure and Autonomic Neuropathy.
For those afflicted with Dysautonomia, there is a range of symptoms that can vary. The prognosis may be one that calls for an abatement of symptoms, or an adjustment to living with a chronic impairment.
Autonomic Disorders are classified into two divisions
The autonomic nervous system conveys sensory impulses from the blood vessels, the heart and all of the organs in the chest, abdomen and pelvis through nerves to other parts of the brain (mainly the medulla, pons and hypothalamus). These impulses often do not reach our consciousness, but elicit largely automatic or reflex responses through the efferent autonomic nerves, thereby eliciting appropriate reactions of the heart, the vascular system, and all the organs of the body to variations in environmental temperature, posture, food intake, stressful experiences and other changes to which all individuals are exposed.
Until recently no information was available. In a yet unpublished study by Dr Paola
Sandroni, Dr Phillip A. Low and colleagues, on 40 patients evaluated at the Mayo Clinic
and followed over a median duration of 52 months, the outcome was surprisingly good.
Outcome was evaluated by a single investigator with the help of A structured questionnaire
. Eighty percent of the patients improved, and 60 % were functionally normal. Fifty
percent of our patients had an antecedent viral infection and this group appeared to have
a somewhat better outlook. I emphasize that the results are still undergoing analysis and
must be regarded as preliminary unpublished data at this time. The important point is that
POTS is treatable. Although patients may continue to have some symptoms, the majority can
improve sufficiently that they are able to continue with activities of daily living
(occupations at their place of employment or at home). All patients need to develop and
maintain good orthostatic health habits to maintain orthostatic tolerance.These include a
high fluid and high salt intake and the maintenance of good conditioning with a proper mix
of rest and exercise.
Most patients with neurocardiogenic syncope have constitutional orthostatic
intolerance. They have recurrent syncope. They can have a history of having fainted in
childhood or their teens under orthostatically stressful conditions or emotionally
stressful situations. The condition does run in families. However, it should be emphasized
that the condition is common in the general population and that it is benign in the vast
majority of cases.
One of the most important mechanisms preventing a reduction in blood pressure when you
stand up is an adequate blood volume. The most important factors of maintaining a normal
blood volume that you can control are an adequate intake of salt and fluids. Patients with
orthostatic intolerance are extremely sensitive to a reduced blood volume. When you eat a
lot of salt, the sodium ions (from salt) are retained in your blood (plasma) and ensures a
normal blood volume. The extra salt is passed in your urine. Caffeine is a drug that will
raise blood pressure. Two cups of strong coffee contains about 250 mg of caffeine, a dose
that is adequate to raise blood pressure in someone who has orthostatic hypotension (a
fall in blood pressure on standing up). Some physicians recommend that patients with
orthostatic hypotension who enjoy coffee drink two cups of coffee (not decaffeinated)
before they get out of bed. It should be pointed out that some patients with POTS do not
tolerate coffee. Their sympathetic nervous system can be already in overdrive and coffee
can aggravate their tachycardia.
Has any research been done on the effects of pregnancy on women with Dysautonomia ( specifically POTS, syncope, and Pure Autonomic Failure) and the effects of the mothers health and/or medication on the baby before and after birth?
The effect of pregnancy on POTS and on patients with OH are two different questions. We have limited information on POTS and pregnancy. These patients being typically female and being fertile can become pregnant. Our patients have managed very well during their pregnancy and the delivery. They typically do very well during their pregnancy, feeling better than when they were not pregnant, especially during the first and second trimesters.
They should not be on any medications during their pregnancy.
The advice I give is as follows. They need to feel sufficiently well that they can manage without any medications. They need to be on a high salt, high fluid regimen. Their pregnancy should go well but should be managed as a high risk pregnancy by their obstetrician. During their delivery, their physicians need to ensure that they are volume expanded and like other high risk deliveries, they should not have to undergo prolonged labor. Finally, I tell them that they should be aware that they may feel worse in the puerperium (after their delivery) when their symptoms may return.
Patients with MSA, PAF and the autonomic neuropathies are more often
older patients who have had their families, so that the question of pregnancy usually does
not arise. The same advice that I give to POTS about medications and delivery applies.
Additionally, they should be aware of two additional facts. First, they have generalized
autonomic failure, so that their BP control is poor and the stress of pregnancy is a major
stress to the autonomic nervous system. Second, the drugs that are sometimes used during
delivery may have unexpected effects. Specifically, they may have denervation
supersensitivity to certain drugs, so that an excessive rise in BP can occur with certain
drugs. Some hypotensive drugs can cause their BP to plummet. In general, we do not
recommend pregnancy for patients with generalized autonomic failure.
Dr Phillip A. Low , M.D.
The prognosis of MSA is unfortunately very poor. Most patients with MSA live for only
about seven years from the time of diagnosis. These patients become progressively more
disabled and generally succumb to a complication such as pneumonia or other infection.
Less often they sometimes die in their sleep, perhaps of sleep apnea. It should however be
recognized that there appears to be a spectrum of severity and that there are some
patients who have less severe disease and live longer.
Patients with orthostatic hypotension can rarely develop such a severe reduction in cerebral blood flow when they stand up that they lose consciousness (syncope).
They can very uncommonly develop a grand mal seizure. That is rare.
Much more common is the development of a few jerking movements, and these are not regarded
as being the same as epileptic seizures. The great importance in recognizing that these
patients have involuntary movements secondary to syncope is that they do not need to be
treated with anticonvulsants.
Programmed exercise and conditioning is an excellent
activity in its own right and generally should not exacerbate neurocardiogenic syncope.
Some patients who have neurocardiogenic syncope will have the syncope immediately after
cessation of physical activity. Should that happen, advice is that they should take
precautions immediately after activity. These might involve the avoidance of the standing
posture and tapering off exertion rather than suddenly stopping
I have been told that I have CFS (Chronic Fatigue Syndrome) POTS, and now Neurocardiogenic Syncope, is it possible to have more than one of these disorders all at once?
They can coexist. POTS and syncope often coexist. Between 10-30% of patients with POTS
have syncope as a complication of POTS.
Has anyone suffered from a syncopal (passing out) episode while resting with Neurocardiogenic syncope?
Syncopal episodes generally do not occur while resting. There are a couple of
exceptions that we are aware of. One is the syncope at rest that follows exertion in some
subjects. Uncommonly, the subject who has had one or more syncopal episode induced by
standing will have an additional one even after sitting or lying down.
Most clinicians regard these as synonymous.
Neurocardiogenic syncope is generally benign and death
is extremely rare. Sudden death is generally due to an Arrhythmia. One reason why the
patient with frequent syncope needs a cardiologic opinion is that it is important to
ensure that the patient truly has neurocardiogenic syncope and not a cardiac rhythm
abnormality. Among patients who have true neurocardiogenic syncope, transient cardiac
asystole (the heart stops beating) can infrequently be a significant component of syncope
["cardioinhibitory" component as in contrast to the "Vasodepressor"
component (low blood pressure) of the NCS ]
. After a number of seconds, the heart restarts spontaneously. We have not had any
confirmed cases of NCS as a cause of sudden death at Mayo. Patients with a history of NCS
may experience sudden death; the cause of the sudden death is almost always related to the
presence of underlying heart disease.
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The National Dysautonomia Research Foundation
(NDRF) has established this site to help inform afflicted patients, physicians
and the general public on the various forms of Dysautonomia. It is our desire to
give timely, as well as, accurate information, however NDRF will not be
responsible for the misinterpretation of the information provided.
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