lthomas521

You can "hide" lots of salt in tomato or potato products, and they have potassium for balance. I get regular (salty) V-8 juice and add several packets of salt to it. I had tried getting empty capsules and putting salt in them, but they didn't stay down.

I wear waist-high compression stockings (30 to 40 mm Hg compression) every day, from the time that I get up to the time that I go to bed. They make a dramatic difference in how I feel. Not surprisingly, they also make a difference in my blood pressure measurements. Especially when I'm feeling particularly wretched, I get orthostatic diastolic hypertension, which means that the bottom number of my blood pressure reading goes up when I stand up. The result is a narrowing of pulse pressure (the difference between the top and bottom number of the blood pressure). The consequence of that is a decrease in circulation in the brain. My doctor told me that the increase in diastolic pressure represents my body's attempt to keep the blood going through my brain even though I don't really have enough blood to tolerate standing up. I've taken my blood pressure lying down, sitting and standing without and then with the stockings. Huge difference. I even did a tilt-table test without and with the stockings, so the effect of my stockings on my POTS has been documented at a major medical center. However, I still qualified for the POTS diagnosis even with the stockings on, so they are not a complete, magical cure. Helpful hints for using compression hose: Follow the manufacturer's instructions for laundering them. I bought the special detergent for them. Don't use Woolite or similar products, or you will lose the elasticity. Keep your fingernails short until you are practiced at putting the stockings on, otherwise you can put a hole or a run in them. The stockings can put intense pressure on your toenails, which can be painful if you have pressure sensitive toenails or are at risk for ingrown toenails. I cut holes in the toes of my stockings to relieve the pressure on my toes. Be very careful with your toes if you are diabetic.

I hope that Morgan gets well soon. I'm not surprised that she got a diagnosis of a psychogenic problem, but I'm not confident that the diagnosis is correct. Most laymen, and indeed many doctors, have a poor understanding of how difficult it is to establish causality (i.e., the existence of a cause and effect relationship). Yet, many doctors blithely give us the diagnosis that our problems are caused by some sort of mental state, if they can't identify a physical cause. They're really going out on a limb by doing that, because they can't actually prove that an unidentified "unresolved conflict" exists, much less that it is causing a physical manifestation. Theoretically, they could establish a "diagnosis ex juvantibus" (which means a diagnosis based on the results of treatment) if the people who they think have these "unresolved conflicts" would actually get better as a result of psychological treatment. Similarly, you might base a reasonable "diagnosis ex juvantibus" of an infection if the problem clears up in a few days when treated with antibiotic. However, I have yet to see any articles documenting that such treatment is successful in POTS, or any other chronic illness, for that matter. What I have seen, as a medical editor with nearly 20 years' experience, is that numerous illnesses that had been thought to be the result of psychological factors are found to be the result of a previously unidentified physical process. For example, the latest Nobel prize in medicine and physiology went to the doctors who discovered that most cases of gastric ulcer disease are actually due to infection with Helicobacter pylori. Remember when everyone thought that ulcers were the result of stress? Doctors who think that they are knowledgeable enough to rule out all physical illnesses are deluding themselves. Just this month, I read about an entirely new hormone that was discovered in women with polycystic ovary syndrome. I, too, went through all sorts of grief with the medical profession during the first few years of my experiences with POTS. When I suggested that I was hypovolemic (because of my astoundingly high pulse), the doctors ran a complete blood count and announced that I wasn't anemic, so there was nothing wrong with me. When I suggested that I might have an adrenal problem, they ran an ACTH stimulation test and announced that my adrenal function was normal. An endocrinologist told me that I didn't have any endocrine problem. A few months later, I went to a nephrologist who works with chronic fatigue syndrome patients. He saw my pallid face and shaking hands and realized instantly that something was wrong. He measured my blood volume and found that it was abnormally low. Then he measured my aldosterone metabolites in a 24-hour urine test and found that I was producing over 8 times the upper limit of normal amounts of the adrenal hormone aldosterone. And the endocrinologist thought he had ruled out all endocrine disorders? It would be nice if Morgan could recover her health because of everyone thinking happy thoughts. Hey, it worked for Tinker Bell in Peter Pan. However, if it turns out that her episodes were due to, say, normokalemic periodic paralysis, I hope she sues the doctor who said that it was psychological for malpractice. Or at least that she writes a letter of complaint to the head of the hospital.

Opioid drugs (including morphine and OxyContin) cause constipation by slowing down intestinal transit. Unfortunately, people don't develop tolerance of the constipating effects of opioids. The American Pain Society recommends that a stimulant laxative be considered for people who are receiving opioid drugs, for as long as they are taking the opioid. A stimulant laxative stimulates the intestinal tract to move things along. In contrast, osmotic laxatives (e.g., milk of magnesia or glycolax) work by drawing water into the intestinal contents. Osmotic laxatives are insufficient for managing opioid-induced constipation: they provide the "moosh" but not the "push." Sometimes doctors forget to mention the stimulant laxative, because they don't have to write a prescription for it. You have to ask them about it. It's also a good idea to talk to your pharmacist about it. If the stimulant laxative works for you, you might be able to tolerate a higher dose of opioid and get better pain control.

I suspect that it is "something in the air." The "something," I'm willing to bet, is ragweed pollen.

What are your insulin levels during the weird paralysis episodes? Insulin can drive potassium right out of your plasma.

Hi Gwendolyn: My guess, which is based on the experiences of several friends and acquaintances, is that your doctor will not test you for celiac disease unless you specifically ask him or her to do so. As for the flu shot: If people think that they had a bad reaction from being injected with dead influenza viruses, just imagine how they might have fared if they had been infected with live ones. I used to work for a respiratory/pulmonary medicine journal, so I've read lots of medical journal articles about flu vaccines over the years. I get a flu shot every year, unless there is a bad shortage of vaccine.

Hi Morgan: That sounds like great news! Only people who have had severe, mysterious illnesses understand how thrilling an abnormal test result can be. I have suspected for a while that your primary problem might be endocrine or metabolic. After they nail down your diagnosis, perhaps you can give the psych dude an introductory endocrinology textbook for his birthday.

The last two times that I underwent a TTT, I brought along a savvy and very assertive friend or relative, who stayed with me the whole time.

I'm glad that people have been listing their diagnoses and interventions. It's been revealing an interesting pattern. Most people seem to have other disorders that could predispose them to POTS: Ehlers-Danlos syndrome, Lyme disease, Chiari malformation or other problem with the cervical spine, celiac disease, and problems with carbohydrate metabolism. If your POTS is caused by some other condition, it is considered to be "secondary" to that other condition. Of course, if the POTS is resulting from a condition that has not yet been diagnosed, the POTS would be classified as "primary."

Hi Gwendolyn: If you have to have your gallbladder out at age 17, you really really really ought to be tested for celiac disease. "Gall bladder disease or malfunction is often associated with celiac disease. It can cause pain in the upper right quadrant of the abdomen, just at the lowest rib on the right side. In one study of 1300 celiacs in Canada, 9% indicated that gall stones were the earliest presentation, sometimes followed by many years prior to correct diagnosis of their celiac disease. In another report, Dr. Kozlowska indicated that 13 of the 41 newly diagnosed celiacs she investigated were suffering from atresia, a condition which is a partial or complete blockage of the bile duct." http://www.celiac.com/st_prod.html?p_prodid=121 "Diagnosis A person seeking preliminary diagnosis must be consuming gluten. Specific antibody blood tests are used to identify the presence of CD and are the initial step in screening. Blood tests include: Anti-Gliadin (AGA) IgA, (AGA) IgG, Anti-Endomysial (EMA) IgA, Anti-tissue transglutaminase (tTG) and total serum IgA. It is essential that patients with positive antibody test, and those with an IgA deficiency, have a small bowel biopsy to confirm the diagnosis and assess the degree of mucosal damage." http://www.celiac.org/cd-diagnosis.php

Hi Morgan: Has anyone measured your blood sugar level when these events happen? If you have an insulin surge, you will end up with low serum potassium. But the real problem might be the low blood sugar. Your brain cannot store energy, so if your blood sugar level goes down, you could experience symptoms of "neuroglycopenia." They include confusion, visual disturbances, seizures and/or loss of consciousness, or activation of the autonomic nervous system (heart palpitations, tremor, anxiety, sweating). The diagnosis of hypoglycemia is based on "Whipple's triad": (1) symptoms of neuroglycopenia, (2) measurement of a low glucose level, (3) relief of symptoms when the glucose levels go up. I believe that hypoglycemia is underdiagnosed. For one thing, it is relatively rare, so when doctors see a low blood glucose reading in someone who is not actually unconscious, they often assume that it just resulted from the blood sample being left out too long before it was processed (the blood cells consume glucose). If they believe that the results are not the result of laboratory error, they might suspect that the patient has surreptitiously taken someone else's diabetes medication in order to produce a fake abnormal result. They are particularly likely to suspect this in someone who has a diabetic relative or a background in health care. It does happen, but there are other ways to test for that! Best of luck.

Hi Gwendolyn: While you are at the GI doctor's, you may want to ask to be tested for celiac disease, which is a common cause of gallbladder trouble and frequently goes undiagnosed. If they don't think to test you for it, they will miss the diagnosis. A friend of mine's son has celiac disease. She said that it took years before the docs figured it out. She said that the average patient goes for about 9 years between the first visit to the doctor for celiac-related problems and the actual diagnosis. Yet the testing for it is very simple. The treatment is theoretically very simple: just don't eat anything with gluten in it. In practice, that might actually be quite difficult, because so many processed foods have some form of gluten (wheat, barley, etc.) hidden in them. The longer you go without a diagnosis of celiac disease, the more complications you are likely to have. They can include allergies, anemia, hypothyroidism, and a whole slew of other problems. I have noticed that other POTSplace forum participants have mentioned that they have celiac disease. I wouldn't be surprised if celiac disease can cause or contribute to POTS. For more information, see http://www.celiac.com/

Hi Ernie: Hyperinsulinism (i.e., too much insulin) can cause a "redistributive hypokalemia." In other words, the potassium gets driven into cells and into urine by the action of the excess insulin. In these cases, if you solve the excessive secretion of insulin, you will probably solve the potassium imbalance. The drugs that POTS patients take to increase blood volume (fludrocortisone and licorice) tend to promote potassium excretion, and probably magnesium excretion as well. If you are taking these drugs, ask your doctor about potassium and magnesium supplementation. Note: if you take too much potassium by mouth, it can cause vomiting. Vomiting makes potassium deficiency worse. Potatoes and orange juice are good sources of potassium for ordinary people, but they have a high glycemic load and would therefore be bad for someone who cannot tolerate a high dose of sugar. I think that V8 juice has a much lower glycemic load, and it has tons of potassium, and the regular version has lots of salt. There are other hereditary causes of hypokalemia (insufficient potassium in the blood serum), notably Gitelman syndrome and Bartter syndrome. However, I don't think that they are associated with severe hypoglycemia, and I don't know whether they cause POTS. http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=263800.

The decision of whether and when to have a child could depend partly on what is causing the POTS. If you know what is causing the POTS, you might find better ways of managing it and you will be better able to guess whether your children will be at risk of developing it, too. One of the things that has astounded me lately is the wide variety of other medical problems (besides POTS) that many of the forum participants have. Some of these disorders (e.g., Ehlers-Danlos syndrome) could explain why the person has POTS. Others might just be bad luck. Just because you have POTS doesn't mean that you are immune to all other illnesses. But if the POTS is "secondary to" (i.e., caused by) another illness, it might be possible to improve the person's condition dramatically by diagnosing and treating the primary illness, if it is in fact treatable. If the person has some other concurrent illness, just by the luck of the draw, then treating that condition might improve the person's overall level of health and functioning well enough that the POTS poses less of a problem. For example, allergies can aggravate POTS, so perhaps allergy shots could prevent the person from falling into a POTShole during ragweed pollen season. If you know that your problem is hereditary, it poses some additional challenges. Your options will depend on several factors: the hereditary pattern of the disorder, whether the genetic basis for the disorder is known, whether the disorder poses a problem if treated properly from the beginning (e.g., celiac disease). If you have a serious genetic disorder that results from a gene that has been identified, you might still be able to have healthy children, especially if you can use in vitro fertilization with preimplantation genetic diagnosis. They can test the embryos for the disease before putting them back. In some situations, they can even test the egg cell before fertilization.

When I black out just a little when I stand up too fast, I quickly tilt my head forward. A licensed practical nurse taught me that trick. If that's not enough, I bend forward at the waist, bracing my hands on my knees or on a table, depending on where I am. If I'm still shaky after that, I sit down and put my head to my knees. Before you stand up, make sure you have room to do these things without bonking your head. I've had so much practice that I can do all of these maneuvers without thinking about them. I haven't actually fainted in years. These maneuvers won't work for everyone. One of my doctors couldn't figure out why I don't fall over. One time, he measured my blood pressure while I was standing, and it was 48 over undetectable. I remember watching the mercury column on the gauge keep dropping. I was wondering why it didn't start jiggling with my pulse at around 90 mm Hg. I had tunnel vision, and things were kind of vague and gray, but I could still read the gauge. I could even talk, more or less coherently. Strange. Helpful hint: Sit up straight and don't cross your legs while you are getting a sitting blood pressure reading. Slouching and crossing my legs boosts my systolic pressure by at least 10 mm Hg, which probably explains why I habitually do those things when I feel bad. Once I had a migraine scotoma, which was much longer lasting than the visual dimming I get from standing up. It started as a blurry spot in the middle of the visual field in both eyes, and then it got kind of jagged and sparkly. It confirmed my doctor's suspicion that my attacks of vertigo and tinnitus ("the spins" and a whooshing noise) were migrainous, even though I wasn't getting any headaches. Now I get one-sided headaches, but without the special effects. As soon as I feel one coming on, I take an over-the-counter aspirin/tylenol/caffeine product and drink lots of water and take a big dose of sugar. The sugar really seems to help me.

The only thing that I know of that can reliably induce POTS in an otherwise healthy person is prolonged space flight. If a doctor is insisting that we are otherwise healthy, does that mean he thinks we are astronauts? Houston, we have a problem.

Sure. You might even bring an elementary logic textbook with you to your next appointment, to make it easy to explain where they are being illogical. Actually, that won't work. Never argue with an unreasonable person. Just take yourself out of their scope of action. If you can get away with it, refuse to pay the fee if you are given a ridiculous misdiagnosis. You clearly didn't receive the services you went in for.

Does horseback riding pose serious orthostatic stress? I'm thinking of taking riding lessons, and the book I'm reading about it says that you are supposed to relax your legs most of the time. Does that mean that my blood supply will slither down into my legs, away from my brain? Sort of like on a tilt table?

Ask the doctor if it would be okay for you to take a magnesium supplement. It might help with the anxiety, and it is a laxative. I take 800 mg a day of magnesium as magnesium oxide, and it has solved my lifelong problem with slow transit constipation. If you have to take other things at the same time, ask the pharmacist if the magnesium will cause any problems with absorption. If you are taking Florinef because of POTS, you might need supplemental magnesium, as well as supplemental potassium.

Anxiety can activate the autonomic nervous system. But so can a lot of purely physiological states, such as hypovolemia, hypoglycemia, etc. To assume that symptoms and signs related to activation of the autonomic nervous system are caused by anxiety or some other mental process is to commit a logical fallacy called affirming the consequent. This is the form of the fallacy: If A, then B. B. Therefore A. I do not have an anxiety problem. I have an "insufficient blood in brain" problem. But it could be worse. I'm convinced that some of the physicians I've had to deal with have an "insufficient brain in head" problem.

Oh, I just checked your medication list and you are already on an intranasal steroid plus some other asthma meds. Well, I hope you feel better soon.

Sorry to hear that you've been so sick, Nina. If you have been having a sinus problem for the past 2 weeks, could it be related to an allergy? It is ragweed season. I have a great deal of trouble when the juniper starts releasing pollen in late winter. My POTS gets much worse, even though I only get a mild runny nose. I look and feel like an extra from a zombie movie. The histamine from the allergic reaction dilates blood vessels, which is the last thing someone with POTS needs. I use loratadine and cromolyn sodium, which are cheap and available over the counter. They bring my pulse back to "normal" (well, normal for me at least) within a day or two. If that doesn't work, you might try an intranasal steroid, but you need a prescription for that. You can find out the pollen counts and the predominant pollen types at www.pollen.com. That's how I figured out that my problem was probably juniper. I hope you feel better soon.

It seems that the professor is a narcissist. The fact that she would presume to tell you how to manage your medical condition even though she had never heard of it before is almost diagnostic. Here are the official American Psychiatric Association's criteria for the diagnosis of narcissistic personality disorder: A pervasive pattern of grandiosity (in fantasy or behavior), need for admiration, and lack of empathy, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following: 1. Has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements) 2. Is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love 3. Believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions) 4. Requires excessive admiration 5. Has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations 6. Is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends 7. Lacks empathy: is unwilling to recognize or identify with the feelings and needs of others 8. Is often envious of others or believes that others are envious of him or her 9. Shows arrogant, haughty behaviors or attitudes It's not really suprising that the teacher is violating the very principles that she is supposed to be teaching. It is advance warning that she cannot be reasoned with, at all. Avoid this person, as you would earthquakes and the plague. Do not take her course unless you absolutely have to. If you absolutely have to take her course, you could, perhaps, survive by sucking up to her shamelessly. However, it's way too late for that option, if you have already defied her in some way. If this were purely a one-on-one interpersonal relationship, you could simply walk away (or wheel away, I guess). This wouldn't pose any threat to your learning, because you already know more than the teacher about the subject. The problem is that it may affect your credentials. How badly do you need to take and pass this course? The problem is that this interaction is taking place in an institutional context. Narcissists are drawn to professions and institutions that enable them to prey on a captive audience (remember, they tend to be "interpersonally exploitive"). Unfortunately, the people who run the institution generally side with the narcissist, because they view any criticism of the narcissist as a criticism of the institution or a threat to a dominance hierarchy of which they are a part. So, basically, I wouldn't count on anyone from within the institution to be of any real help. As far as I can tell, you have three basic options: (1) drop the course, (2) swallow your pride and just put up with obnoxious behavior on the part of the teacher, or (3) seek help from an advocacy group outside of the university. Best of luck.

Back when I was very sick, I had only a certain amount of energy. If I squandered it doing "exercise," I wouldn't have enough energy to do other kinds of activities that involve physical exertion. For example, to do laundry, I'd have to take things down and then up two flights of stairs. That felt like exertion to me, but people don't think of that sort of thing as exercise. The more I tried to "exercise," the worse my quality of life was. The exercise made me feel worse, not better, and nothing else that I needed to do was getting done. So I finally just decided to pace myself, and allocate my energy efficiently. I would only do "exercise" if I could "afford" it. Right before I started on the thiamine, I had a cardiac output test, which showed that my heart was perfectly normal, but that my anaerobic threshold was astoundingly low. The funny thing was, I didn't even feel bad at all during the test. But it did explain why exercise would wipe me out. The exercise physiologist interpreted the test as meaning that I needed to exercise more. But I knew from long and painful experience that that approach made me worse, not better. It would have been interesting to measure my anaerobic threshold a few days after I started taking the thiamine, because suddenly I could tolerate exertion again. Whether exercise will help or harm you depends on why you are sick to begin with. Recommendations about exercise are made for the general population, not for people with rare, unusual medical problems. To take an extreme example, if you take someone who has a severe thiamine deficiency and force him to exercise, you can induce a very severe clinical condition that will kill the person quickly. The person would live much longer if you don't force him to exercise. I'm not saying that exercise is inherently bad, just that recommendations that work for the general population might be very bad for people with unusual medical conditions, such as a metabolic error. Similarly, some kinds of stretching might be a bad idea if you have a connective tissue disorder. If you are already having a problem with joint laxity, might stretching make it worse? Perhaps a good physical therapist could provide good guidance. I don't know. I think that a lot of people are swayed by the "Muscular Christian" variant of the Puritan Ethic. The pain and suffering resulting from exercise are a kind of "mortification of the flesh." So, instead of asking why some of us can't exercise, people look down their noses at us and conclude that we are sinners and deserve the **** that our lives have become. Once people get into that mindset, you can't reason with them at all. They won't even listen to the fact that POTS can happen to elite athletes.