CFS/ME/FM MEDICAL INFO
Except where clearly indicated by author name and medical credentials, any information contained on these pages may or may not be exactly medically accurate.
The article excerpts contained herein are not meant to replace visits to your own physician - they are meant to be helpful and informative only.I believe that the more we learn about our disease processes, the better we can learn to live with them successfully.
Most articles here are the result of my research on-line as well as from local CFS/ME organizations',newslists, patient handouts, etc. and also from my own personal medical library including texts on autoimmune diseases and nutritional supplements ( All articles copied with permission from any source will be given due copywrite credit).
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Original Source: Peter C. Rowe,
MD, Dept of Pediatrics Issam Bou-Holaigah, MD, Division of
Pediatric Cardiology Jean Kan, MD,Division of Pediatric
Cardiology Hugh Calkins, MD, Division of Cardiology The Johns
Hopkins Hospital, June 1995
Provided courtesy Mary O'Connor and Ellen Atwood, moderators of CompuServe CFS, FM, ME Forum (Section 16, GoodHealth Forum)
NEURALLY MEDIATED HYPOTENSION AND ITS TREATMENT
Your tilt test results or your clinical history have indicated that you havea condition known as neurally mediated hypotension. This condition is also know by the following names: Neurocardiogenic syncope, vasodepressor syncope, vasovagal syncope, and autonomic dsyfunction.
WHAT IS NEURALLY MEDIATED HYPOTENSION?
Hypotension is the formal medical term for low blood pressure, and syncope is the term for fainting. Neurally mediated hypotension occurs when there is an abnormal reflex interaction between the heart and the brain, both of which are structurally normal.
WHEN DOES NEURALLY MEDIATED HYPOTENSION LEAD TO SYMPTOMS?
Neurally mediated hypotension occurs in susceptible individuals after prolonged periods of upright posture, such as standing in line, standing in a shower, or even sitting up for long periods. We don't yet know the extent to which susceptibility to neurally mediated hypotension is determined by diet, infection, or genetic factors.
HOW DOES UPRIGHT POSTURE LEAD TO THESE PROBLEMS?
After a normal individual stands up, blood pools in the legs through the effect of gravity. To compensate for the lower amount of blood returning to the heart immediately after standing, the body has a surge of adrenaline (epinephrine).
This adrenaline surge leads to a faster heart rate and to more vigorous heart beats (a familiar feeling we all experience when we are frigthened, for example). The faster heart rate and more vigorous heart contractions allow the reduced amount of blood returning to the heart to be pumped more efficiently to vital organs (especially the brain).
In individuals with neurally mediated hypotension, there is a "miscommunication" between the heart and the brain. Just when the heart needs to beat faster, (To pump blood to the brain and prevent fainting), the brain sends out the message that the heart rate should be slowed down, and that the blood vessels in the arms and legs should dilate.
These actions take even more blood away from the central part of the circulation where it is needed. In response, individuals fell lightheaded or may faint because not enough blood is getting to the brain. Fainting is helpful, in that it restores a person to the flat position, removing the pooling effect of gravity on the blood, and allowing more blood to return to the heart.
Following the lightheadedness or syncope, most individuals feel tired and their mental abilities are somewhat foggy.
WHICH SYMPTOMS CAN BE CAUSED BY THE NEURALLY MEDIATED HYPOTENSION?
Recurrent lightheadedness and fainting are common symptoms, as is an unusual difficulty wiht prolonged fatigue after a modest amount of physical activity. This post-exertional fatigue can last 24-72 hours, and interferes with many daily activities.
We have also observed that chronic fatigue, muscle aches (or fibromyalgia), headahces, and mental confusion can be prominent symptoms of neurally mediated hypotension even in individuals who do not faint.
The mental confusion takes the form of difficulty concentrating, staying on taks, paying attention, or finding the right words. Some describe being in a "mental fog." It appears that as long as the reflex interaction between the heart and the brain is disordered whenever the person stands or sits upright for a period of time, then the blood pressure is improperly regulated, and these symptoms are the result.
WHAT CAUSES NEURALLY MEDIATED HYPOTENSION?
The answer to this question isn't well understood at present, but we suspect neurally mediated hypotension has genetic origins in some people, because it is not uncommon for us to find several individuals with neurally mediated hypotension in the same family. No gene for this condition has been identified.
It is likely that we all could develop neurally mediated hypotension provided that the conditions were sufficiently severe: for example, if we did not take in enough fluids or salt, were subjected to extremely prolonged periods of upright posture, or to very warm environments. The reflex response which results in lowered blood pressure may simply occur at an earlier point in some individuals.
One of the most common, and treatable problems identified in those with neurally mediated hypotension is a low salt (sodium) intake in the diet. Salt helps us retain fluid in the blood vessels, and helps maintain a healthy blood pressure. Salt has received bad press in the last couple fo decades because a HIGH salt diet in some individuals with high or high-normal blood pressure can contribute to further elevations in blood pressure, and thereby to heat disease and stroke. This has led to general health recommendations to "cut down on salt." As we are finding, this general recommendation isn't right for all people.
An average adult blood pressure is 120/70, and a blood pressure is considered elevated if it is above 140/90. For individuals with neurally mediated hypotension, many of whom have low or low-normal blood pressure (with systolic blood pressures [the top number] being between 90-110, a low salt intake may be unhealthy, and may move them from feeling good to developing the symptoms of fatigue and lightheadedness described earlier.
In experimental work earlier this centruy, severe short term salt depletion led to fatigue and mental dulling in the adult research subjects.
HOW IS NEURALLY MEDIATED HYPOTENSION TREATED?
The first step for those who have been on a low salt intake is to increase the amount of salt and fluid they take in. The Appendix to this document contains a list of high salt foods, but specific brands are now conveniently labeled with sodium content for you to check. For some mildly affectted individuals, this may be all that is needed.
Many others we have evaluated require one of several medications in addition to the incrased salt and fluid intake. To be successful, the increased salt intake must be accomapnied by a sufficient increase in the intake of water and other fluids. The Appendix also describes some of the drugs used for treating neurally mediated hypotension.
DOES TREATMENT CURE THE PROBLEM?
It needs to be emphasized that, when successful, the medications for neurally mediated hypotension do not CURE the problem. Rather, they help control symptoms. When medications are stopped and when salt intake is reduced, symptoms frequently reappear. Many of the adolescents and adults with the problem also have symptoms resurface or worsen at busy or stressful times (making an oral presentation in class, having company over for Thanksgiving).
The question of what happens over the long term has not been adequately studied, and the optimal duration of medical treatment is still being worked out. Unfortunately, despite appropriate doses of the avialable medications for neurally mediated hypotension, some individuals with abnormal tilt table tests do not experience an improvement in symptoms, and some are intolerant of the medications. This emphasizes the need for more research on this problem.
WHAT OTHER THINGS CAN I DO TO GET BETTER?
Where practical, avoid circumstances which might bring on symptoms. For example, take shorter showers and aim for a cooler water temperature, or take baths instead. Avoid saunas and hot tubs. Avoid standing for prolonged periods in hot environements, and on very hot days. You may also want to avoid alcohol because it often leads to dilation of the veins, and this can "steal" bloo daway from the central circulation. Most with neurally mediated hypotension are quite intolerant of alcohol.
We have adopted the recommendation that the head of the bead be elevated slightly by 10-15 degrees, a position that appears to help the body retain fluid at night rather than lose fluid in the urine. Depending on one's level of comfort with this form of dress, waist-high support hose can prevent some of the excessive pooling of blood in the legs (knee-high support socks don't do the trick).
We want to empahsize strongly that a key part of the therapy is to increase fluid intake. Those who force themselves to drink extra fluids every coupld of hours seem to do better than those who aren't as serious about increasing their fluid intake.
SUGGESTIONS FOR A HIGH SODIUM DIET
An adult requires between 1100 and 3300 milligrams of sodium to maintain health. Although health advice in the last two decades has suggested that a low salt intake helps prevent heart disease and stroke, many individuals with neurally mediated hypotension, including those who begin with a low normal blood pressure, cannot tolerate this low salt diet. We believe that individuals with neurally mediated hypotension need to take in much higher amounts of salt.
The exact amount needed is different for each individual, and is often affected by your taste for salty foods, but it is difficult to take too much, provided that you have access to lots of fluids if you become thirsty. Salt tablets are a way of getting adequate amounts of salt without dramatically changing the taste of your foods. Table salt is also an excellent source of sodium, as it has 2400 mg of sodium per tablespoon. As for fluid intake, be sure to drink at least 2 liters of fluid a day.
The following are high salt foods to help with our needs:
BREADS AND CEREALS
Wheaties (1 cup) 400 Waffles (one) 355 All Bran (1/2 cup) 285 Cheerios (1 cup) 260 Rice Krispies (1 cup) 260 Saltine Crackers (6) 200
DAIRY PRODUCTS
FRUITS AND VEGETABLES:
MEAT, POULTRY, FISH
SNACKS, CONDIMENTS
DRUGS FOR TREATING NEURALLY MEDIATED HYPOTENSION
1. Florinef. Formal (generic) name: Fludrocortisone
Type of drug: A mineralcorticoid steroid
Action:
Common confusions:
Side effects:
If the dose is too high, Florinef can raise the blood pressure too high. For this reason, we recommend that blood pressure be monitored carefully, especially in the weeks after starting on the drug.
Like other steroids, Florinef can occasionally affect mood, causing sadness, crying, or depression. If these symptoms occur, check in with one of us [This refers to the doctors at Johns Hopkins - would then refer to our own physician], as you may need to stop the drug.
Florinef can cause a worsening of acne. If the drug is effective in controlling symptoms of neurally mediated hypotension, it may be desirable to use other treatments to control the acne.
Suggested dose for CFS patients: Patients with chronic fatigue syndrome who also have neurally mediated hypotension often have medication sensitivities and appear to benefit from a gradual increase in their Florinef dose. We recommend beginning with 1/4 tablet per day, rather than the full 0.1 mg tablet.
If the 1/4 tablet dose is tolerated for 4-7 days, increase to 1/2 tablet for 3-7 days, then to 3/4 tablet or a full 0.1 mg tablet. Doses above this amount may be necessary.
Comments:
2. TENORMIN. Formal (generic name) atenolol Type of drug: A beta blocker
Attention:
Side effects:
Doses:
3. NORPACE. Formal (generic) name: disopyramide
Type of drug: an anti-arrhtymice, anti-cholingeric drug.
Action:
Side effects:
Doses:
SUGGESTIONS FOR A HIGH POTASSIUM DIET FOR THOSE ON FLORINEF
An adult requires between 1600 to 2000 mg of potassium per day to maintain health. However, those who are taking Florinef will have a higher need because the drug depletes potassium. Unlike sodium, manufacturers are not required to list the amount of potassium on food labels. For this reason, it is important that you become familiar with the food items listed below.
Generally, good sources of potassium include milk, meats, and fruits and vegetables. Below is a more complete list of potassium content of various foods.
BEANS/PEAS
Pork and Beans (1/2 cup) 335 Lima Beans (1/2 cup) 480 Blackeye peas, kidney beans, lentils (1/2 cup) 350
CEREALS
DAIRY PRODUCTS
MISCELLANEOUS
FRUITS
MEATS
VEGETABLES
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