lthomas521

A friend of mine had a below-the-knee amputation many years ago and has a prosthetic lower leg. She walks with a barely noticeable limp, but some days walking is very painful. Occasionally, she gets a lecture from someone who thinks she shouldn't be using the blue parking space. In response, she pulls up her pants leg, shows the person her prosthesis, and then THANKS the person for their vigilence in helping to make sure that the spaces are available for people who need them.

Do you mean Niaspan? Slow-release niacin? It might not cause flushing, because of the slow-release feature. I don't know whether Niaspan is different from "low-flush niacin" (inositol hexaniacinate). Niacin is perhaps the most effective drug for increasing the "good" (HDL) cholesterol. The downside is that you would need such high doses that it can cause flushing and liver damage. The high-dose niacin therapy used for treating hypercholesterolemia is available over the counter but should definitely be done under a doctor's supervision, because you need to monitor your liver enzymes, which can tell you if the niacin is damaging your liver. If you have high cholesterol, you might really benefit from a visit to a nutritionist. There are lots of foods that can help lower serum cholesterol, at least in some people. For example, oat or amaranth breakfast cereal supposedly can lower serum cholesterol, whereas wheat bran cereal supposedly can't. So some fairly simple food choices can make a difference. The best thing would be to find a knowledgeable nutritionist to help you work out a practical plan. Of course, some people will have high cholesterol even if they eat nothing but rabbit food. So thank goodness there are drugs. But I wouldn't want to take them unless dietary management alone is insufficient.

Thiamine, 500 mg per day, plus a garlic capsule to make the thiamine more bioavailable. Thiamine treatment turned me from a pallid, torpid, near-zombie to looking and feeling almost normal. I felt dramatically better within the first 24 hours of my first 300 mg dose of extra thiamine. After a few months, I was able to quit taking Florinef and a beta blocker. My thiamine levels were not low to begin with. If I stop taking the thiamine, I have a noticeable (to other people and to me) decline in my mental functioning within 24 hours. I also take 800 mg of magnesium every day as magnesium oxide. It seems to help with my energy (you need it to use thiamine properly), but it has completely solved my lifelong problem with slow-transit constipation. (It's a POTS thing, not a lifestyle thing. I had problems with constipation even when I was following a largely vegan, high-fiber diet and getting plenty of exercise.) I also need to take huge amounts of salt and water and I wear waist-high 30 to 40 mm Hg compression stockings absolutely every day. Licorice seems to help. I have some midodrine, which I take in the mornings when I'm going through a rough stretch (e.g., extended hot weather). I've gotten even better when I added a B-50 capsule (50 mg of each of the B's) plus a total of 800 mcg of folate a day, plus Feosol (iron supplement). Also, I can't skip meals, or I'll crash. Caffeine seems to help. For migraines, I take an over-the-counter aspirin-acetaminophen-caffeine preparation, and lots of sugar. But it's best to prevent them by avoiding low blood sugar and/or dehydration. I get hayfever for a few weeks in late winter (probably because of juniper pollen), and that aggravates my POTS tremendously. Antihistamines and cromolyn sodium nasal spray set me to rights. I have taken Epogen in the past. It restored my red cell mass, but my plasma volume decreased further. My doctor and I decided to stop it because of reports of pure red cell aplasia in some people who were taking a different formulation. I have used Florinef and a beta blocker in the past. The beta blocker is great if you are a piano player. Keeps your hands steady as a rock, no stage fright. I have hyperadrenergic POTS. I don't seem to have any connective tissue or primary neurologic problem. Mine appears to be metabolic, possibly mitochondrial. The vitamins that help me are things that are routinely given to people with mitochondrial disease. I have had some suspiciously low blood sugar readings in the mornings, along with suspiciously low cortisol, and I feel better quickly if I eat lots of sugar.

I still have trouble on really hot days. Eventually, I will accept this fact and schedule my activities around the weather forecast.

Here's a Canadian hospital that knows about mitochondrial disease. http://www.vanhosp.bc.ca/html/wellness_amd...ial_howare.html

Ernie says: I would like to get investigated for metabolic disorders but I just don't know how to "enter" into that specialty. The closer I am getting now is having an endocrinologist. Hi Ernie: Back in my naive days (pre-POTS), I would have thought it an excellent idea to see an endocrinologist if you probably have a metabolic disorder. Theoretically, they are the people who are supposed to be able to help people with metabolic problems. Unfortunately, my experience with endocrinologists (and I have seen several) has been uniformly disappointing. The ones I have seen have been "short-order cooks." If you don't have one of the handful of diseases they already know something about, they are absolutely useless, and often quite rude. Back when I was on an antidepressant, which helped a little with the POTS, I went to see a psychiatrist. The psychiatrist did not think I was depressed (nor did I). When she heard about my family history of autoimmune disorder and thyroid disease, she told me to see an endocrinologist. I pressured him into running a bunch of tests, but then he concluded that there was nothing wrong with me. He even claimed that I didn't really have orthostatic hypotension, because the systolic pressure had to drop a full 20 points, and mine only dropped by 15 points. (It was only 95 to start with, but that didn't matter to him.) He told me that I didn't have an endocrine or metabolic problem. Shortly thereafter, I went to see a nephrologist, who took one look at me and figured out that I probably had abnormally low blood volume. He said that my pallor, tremor, and orthostatic diastolic hypertension (my bottom blood pressure number actually went up when I stood up, resulting in a narrowing of my pulse pressure) suggested that I had significant volume depletion. Sure enough, the blood volume measurements showed that both my plasma volume and my red blood cell mass were abnormally low. He also ran a 24-hour urine test, which showed that my adrenal glands were producing over 8 times as much aldosterone as a normal person's would. So, basically, he found some evidence of serious endocrine derangements. He gave me two kinds of hormone replacement (Epogen and Florinef), which helped a lot. But he wasn't an endocrinologist. He wrote a nice letter to the endocrinologist, whom he knows personally, explaining all of the interesting endocrine findings in my case. It filled me with glee. I stumbled upon the thiamine supplementation, which has had a nearly miraculous effect, all by myself. The fact that pharmacologic doses of various vitamins have put me back on my feet suggests that my problem is metabolic. And I mean back on my feet literally. I went to a candlelight vigil tonight and spent over an hour and a half standing around holding a lit candle in one hand and my dog's leash in the other. I didn't burn myself, lose my grip on the leash, or drip wax on the dog. I didn't even feel uncomfortable. The problem with the "endocretins" I have encountered is that they look at paper printouts and don't look at patients. Anyone could see that I was sick, but the routine screening tests they do for the common diseases didn't show any abnormalities. Therefore I was well. QED. My sister once had an endocrinologist who actually looked at his patients. He said that he had been practicing endocrinology since before a lot of the tests came out, and he thought that they had serious limitations. He also had a PhD as well as an MD degree. Unfortunately, he died a few years ago. I don't mean to discourage you from seeking help from an endocrinologist. My point is that you have to interview them before you let them do an initial workup. Explain that you have a hereditary metabolic disorder that probably hasn't been described in the medical literature yet. If the doctor is dismissive, go to someone else. If I were you, I'd contact the local support group for muscular dystrophy and ask them if any local doctors are interested in mitochondria. The muscular dystrophy people will probably know. In the meantime, you might want to find a good nutritionist or registered dietician. Explain about the fasting hypoglycemia. They'll probably tell you to eat lots of slow-release carbs (high carbohydrate content but low glycemic index). They might also tell you what kinds of fats to eat. For example, if you have a carnitine transport problem, you might be unable to metabolize long-chain fatty acids. So you would need to know how to get short-chain fatty acids instead. A dietician might also be able to refer you to a doctor who can evaluate your amino acid metabolism and fatty acid metabolism. Let us know if you have any luck!

Ernie says: I need to eat proteins before going to bed otherwise I wake up at around 3-4 a.m. craving sugar. Hi Ernie: It sounds as if your health problem might be primarily metabolic. Do you have fasting (postabsorptive) hypoglycemia? What's your fasting glucose level? Have you done one of those tests where they keep testing your blood glucose during a prolonged (72-hour) fast? Have they evaluated you for a mitochondrial disorder? That could explain why other people in your family are sick. Have any physicians ever suggested that you try L-carnitine? It's an amino acid that your body uses to transport fatty acids into your mitochondria and the breakdown products of fatty acids out of your mitochondria. If you don't have enough L-carnitine (for reasons that can be hereditary), you won't be able to metabolize fats efficiently, so you could conceivably end up using up your glycogen stores and then burning your blood plasma for energy. Unless you are a diabetic or unconscious, it's likely that doctors will overlook low blood glucose readings. You can get a misleadingly low blood glucose reading if they leave your blood sample lying around for too long before they process it. The red blood cells use up the glucose for energy. So they might dismiss a low reading as a laboratory artifact. Second, if you have a suspiciously low blood sugar reading but don't have diabetes, the doctors might suspect that you have been surreptiously taking someone else's diabetes medication. So you might get a false accusation of Munchausen syndrome. Or they might just dismiss you as a kook as soon as you say the word "hypoglycemia," because it was a fad diagnosis in the 1970s. I don't know if you can get reasonable results from using a home blood glucose meter. I don't think that they are particularly accurate in the very low range. Plus, they use a capillary blood sample, not a venous blood sample. Blood glucose is lower in venous blood than in capillary blood, because the glucose gets absorbed by the tissues as it passes through the capillaries. In any event, waking up at 3 am craving sugar unless you ate protein sounds like an important clue to me. I really hope that you can find out what's wrong, especially since it could end up helping your relatives as well.

"Has anyone found it hard to move out of this mentality once they start to recover?" Not me. After about 2 weeks of robust good health, I started to think of myself as a healthy person again. I found myself saying things like "back when I was sick." So, when I had a few bad days as a result of a horrific heatwave, it took me totally by surprise. My long-suffering spouse says, "Now you have some bad days and lots of good days, so you are far better off than you were when you were having only bad days." The voice of reason. One caveat: If your health or level of functioning improves because you are sticking to a bizarre regimen (salt loading, water loading, etc.), you might be "healthy" but you are not really "normal." If you slack off because you feel normal, you will get sick again quickly, and it may take you a while to regain lost ground. Also, you may make unrealistic predictions about your abilities. So the "sick" identity might actually be adaptive, at least for people who have to continue to eat enough salt to gag a horse.

I'm glad that everyone is being so thoughtful and sensitive on this topic. It's an emotional minefield for a lot of people. I was saddened to read that Patricia's daughter has been making hateful comments to her. I hope that these comments are just an occasional manifestation of irritability, which POTS is notorious for causing. Does she make these remarks at random times, or only when she's being pushed beyond her physical limits? If it's the latter, it may be best to wait until her vital signs are stable and then discuss the matter like adults, to help her find appropriate ways to express her needs. The daughter's behavior might be a manifestation of depression. But it might be simpler than that. The problem might not be the daughter's anger, but her incorrect belief that it is acceptable for her to verbally abuse her mother. In other words, the daughter might be indulging in bullying behavior, with her mother as a captive target. If you ignore bullying, it is likely to get worse, because it is reinforced by the satisfying sense of dominance the bully experiences as a result. Bullying is a natural behavior among children. They have to be taught that it is immoral and that they are responsible for the moral choices that they make. If the daughter doesn't learn that her feelings aren't a license for her to be nasty to people, she could grow up to be a truly unpleasant adult. Unfortunately, traits that make one a decent human being also make one a tempting target for bullies. If Patricia didn't care about her daughter's well-being, the hateful remarks would miss their intended target, and the daughter could get little or no satisfaction out of making them. It sounds as if the daughter has been getting "anger management" counseling. I'm skeptical about the value of that kind of therapy. It seems to be a popular (but spectacularly unsuccessful) approach to dealing with domestic violence. However, the problem in domestic violence is not that the abusers cannot control their anger (they seem to control it just fine in public), but that they feel entitled to abuse their victims. Patricia's daughter may be laboring under a similar misconception. If the girl's counselor is following an "anger management" approach, it may be time to find a new counselor, preferably one who understands bullying-related issues. If the problem is bullying, the most important thing is to avoid reinforcing it. Don't give the bully the satisfaction of seeing the reaction that she expects. Never allow the bully to achieve her goals through behavior that you find reprehensible. Also, don't counterattack, because that just provides a model of appalling behavior for her to imitate. There are plenty of Web sites on this issue. They can be found under the keyword "bullying." I almost hope that the problem is just bullying. It's much more easily managed than the alternatives.

This poll should let you pick more than one. I have been given different psychiatric diagnoses at various times. However, the psychiatric diagnoses were all based on the assumption that there was no physical basis for my complaints of exhaustion and orthostatic problems (either orthostatic hypotension or POTS, it has varied over time). I too got a conversion/somatization disorder diagnosis at Mayo. They also suggested a personality disorder, because they thought I was going to a medical appointment just for kicks.

The problem might not be the glucose level, per se, but the epinephrine response to the glucose nadir (the "nadir" means the lowest level you are getting). Here's some commentary from a pathologist (www.pathguy.com) The real problem with these people seems to be an unusually epinephrine response at the glucose nadir. Epinephrine, not "low glucose", makes them feel "nervous" and "shaky". See JAMA 251: 612, 1984. Conversely, real hypoglycemia in the absence of high epinephrine is generally unnoticed by patients, especially diabetics (Lancet 2: 966, 1987). Don't confuse these episodes with "panic attacks"(Am. J. Psych. 143: 654, 1986; Psychosomatics 27:833, 1986).

Hypoglycemia can cause what looks like dysautonomia. Unfortunately, hypoglycemia was a fad diagnosis back in the 1970s, so if someone with unexplained dysautonomia and suspiciously low fasting blood glucose levels suggests that hypoglycemia might be the problem, she will probably be dismissed as some sort of nut-case health faddist. (Been there.) If you have polycystic ovary syndrome, you probably have hyperglycemia, which is blood sugar levels that are too high. Polycystic ovary syndrome is associated with insulin resistance. Polycystic ovary syndrome is also associated with anovulation or oligoovulation (i.e.,. you don't ovulate at all or at least very often). Sometimes, women who are infertile because of polycystic ovary syndrome start ovulating again when they take a drug that makes them more sensitive to their natural insulin. Polycystic ovary syndrome is poorly defined and poorly understood. If a woman with PCOS is overweight, then weight loss may be helpful. But the condition can also occur in lean women. It may have something to do with their levels of androgens (masculinizing hormones). Anyone with PCOS should be seeing a good endocrinologist. Anyone who has hyperglycemia may want to talk to their doctor about taking substantial doses of thiamine supplementation, preferably a lipid-soluble form, such as benfotiamine, to prevent damage to the nerves, eyes, and kidneys. These forms of thiamine have been shown in animal and human studies to protect the eyes and kidneys in diabetic subjects, even if their blood sugar control was not improved. They have also been shown to actually reverse the crippling burning pain that diabetics have in their feet. To find citations for the published studies on this topic, search in Entrez Pubmed: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi. Use the search terms thiamine and diabetes. If you have hyperglycemia, you may have to tell your doctor about thiamine. The thiamine products are available over the counter, and there is no patent on them. Consequently, no pharmaceutical companies have paid out all sorts of money to have salespeople go to doctors' offices to tell them about this. Nor have any of them been paying people to write articles and textbook chapters about thiamine. The only commercial preparation that I know of is Thiasure (www.thiasure.com), and they don't have anywhere near the promotion/advertising budget that would be needed to make a dent in medical opinion. Hypoglycemia, or low blood sugar, is another issue altogether. You can get "reactive" hypoglycemia if your pancreas responds too briskly to a peak in blood sugar. Your blood glucose levels plummet after a peak. The usual recommendations for managing reactive hypoglycemia are to avoid foods with a high glycemic load. The glycemic load is a function of the glycemic index (a measure of how quickly the carbohydrates in the food are converted to blood glucose) and the total amount of carbohydrates in the food. For example, watermelon and baked potato both have a high glycemic index, but the much higher carbohydrate content of a baked potato means that it results in a higher glycemic load. Reactive hypoglycemia may mean that you are at risk for the development of type 2 diabetes ("adult-onset" or "non-insulin-dependent" diabetes). For dietary recommendations, google the term "glycemic load." Diabetics can also get hypoglycemia if they don't accurately match their insulin dosage to their food intake and activity level. They can also get it if they overdose on their insulin-sensitizing agents. However, there are other causes of hypoglycemia. I read recently about a man with a mitochondrial disorder that interfered with his ability to metabolize certain kinds of fats. If he didn't consume the right sort of fats, he would use up his glycogen stores and end up with serious hypoglycemia. This is a rare condition and hard to diagnose. From a public health perspective, high sugar intakes are a major problem. Consequently, the occasional person who has hypoglycemia because of a rare metabolic problem is easily overlooked.

A woman over 30 who suddenly becomes more active is a prime candidate for plantar fasciitis. That pretty much describes me. Since I've recently rejoined the land of the living, I've been spending a lot more time on my feet. My right heel has been bothering me a little for the past few days. I'd rate the pain as about a 1 on a scale of 1 to 10, with 1 being barely noticeable and 10 being the worst pain imaginable. But I figure that any pain in any anatomic region with lots of moving parts should be addressed immediately. I was hoping that I don't have a "heel spur." I've known women, including my mother, who have had all sorts of problems with them. So I entered the words "heel pain" in the Web browser and found the following link. http://heelspurs.com Apparently, "heel spurs" are the result of plantar fasciitis, which is a result of overuse, compounded by lack of flexibility. Plantar fasciitis is worse in obese people, because their extra weight results in worse mechanical stress on the plantar fascia. The Web site has all sorts of information about how to deal with the problem. None of the women who've told me about their heel spurs has ever mentioned the common-sense physical therapy outlined in this Web site. Recently, a coworker of mine had "plantar fasciitis" and did get physical therapy, which helped enormously. My plan is to use RICE (Rest, Ice, Compression, and Elevation) for a few days. I will also use the stretching exercises that the Web site describes. I may even hobble on over to the drugstore for some athletic tape, to tape the bottom of my foot.

Chiropractic manipulation of the cervical spine (i.e., the neck) can damage the vertebral arteries, possibly leading to disabling or lethal stroke. No one really knows how often this occurs. However, there seems to be no evidence that manipulation of the cervical spine is otherwise actually beneficial. Buyer beware. http://www.eurekalert.org/pub_releases/200...--cto050703.php http://www.quackwatch.org/01QuackeryRelate...hirostroke.html

Back when I was very sick, I went for a walk with my husband and dog to the local park. I got tired and sat down on one of the swings. Stupidly, I actually swung a little. Big mistake. I won't go anywhere near an amusement park ride. If I had to ride in a fast elevator, I'd sit down.

Prilipko O, Dehdashti AR, Zaim S, Seeck M. Orthostatic intolerance and syncope associated with Chiari type I malformation. J Neurol Neurosurg Psychiatry. 2005 Jul;76(7):1034-6. http://jnnp.bmjjournals.com/cgi/content/full/76/7/1034 Presurgical Epilepsy Evaluation Unit, Program of Functional Neurology and Neurosurgery, University of Lausanne, Switzerland. The Chiari type I malformation (CM1) is characterized by herniation of cerebellar tonsils to at least 3-5 mm below the plane of foramen magnum and can present with a wide variety of clinical symptoms, frequently including occipital headaches, secondary to bulbar and/or medullary distress. Rarely, syncopal episodes have also been described and attributed to either compression of the midbrain ascending reticular system, or vascular compromise (vertebrobasilar artery compression, hypotension). We report the first case of a CM1 patient with frequently recurring syncope due to postural orthostatic tachycardia syndrome (POTS), a form of orthostatic intolerance, whose symptoms resolved completely after surgical intervention. It is important to stress that it is not clear whether the described association of POTS and CM1 in our patient is a fortuitous finding in an isolated case or a reflection of a more systematic association between the two pathologies.

I checked with two acquaintances who have practiced medicine in the United States: a gynecologist and a psychiatrist (neither of whom has ever been my doctor). To my horror, they both confirmed what you wrote. The psychiatrist said that most nonpsychiatrist physicians think that psychiatry is "easy," so they blithely make psychiatric diagnoses even if they have had no particular training in psychiatry (and sometimes even if they lack rudimentary interpersonal skills, in my experience). When I asked the psychiatrist about the prevalence of narcissistic personality disorder among physicians, he laughed and said that it probably approaches 100% in some of the academic centers. I hope he was kidding. We have to come up with a list of suitable ICD-9 codes for POTS and other dysautonomias, so that the doctors can fill out their forms honestly.

Ernie's right: "What matters is that we have symptoms that they have not heard about in med school thus we must be making it up for some emotional reason." I think that some doctors are functioning as if they were short-order cooks. If you have something that is not on their limited menu, they assume that you are crazy. When I went to Mayo, one of the doctors there suggested that I might have a histrionic personality disorder, that I was just going to doctors to fulfill a pathological need for attention. I thought this was extremely illogical, because I had dropped out of all of my social and civic activities because I was sick. What kind of physically healthy person with histrionic personality disorder would do that? Just to be able to go to a doctor's appointment once every few months? Ludicrous. When I told my sister about the personality disorder diagnosis, she laughed herself silly. She told me she really liked the idea that I had a personality disorder, but that's not the one she would have picked for me. "You're the least histrionic person I know. You don't want attention. You mainly want to be left alone to read your book." Another friend of mine also thought that the suggestion of histrionic personality disorder was the stupidest thing he had ever heard. He had tried unsuccessfully to get me to audition for a role in his community theater production of HMS Pinafore. He knew that I had the voice for it. The problem was that I was too sick to sing, and too sick to stand up for long, and way too sick to sing and stand up simultaneously. Much less dance. He eventually persuaded me to fill in occasionally for the rehearsal piano player for their next production, the Mikado. That I could do sitting down, and without any Valsalva maneuver. Plus, I didn't have the pressure of being able to function in the real performances. Even so, I couldn't do two rehearsals in a row without collapsing with a debilitating migraine. This does not sound like the behavior of a physically healthy person with histrionic personality disorder. In fact, it pretty much rules it out. Both my sister and my friend (and my husband) thought that I would never have been given such a ridiculous misdiagnosis if I were male, unless perhaps I were a gay male. My theory is that giving me a ludicrous misdiagnosis of personality disorder was an example of projection, an annoying behavior commonly exhibited by people who have genuine, DSM-IV personality disorders. They accuse you of having a defect that they actually have but you don't. Have any of you ever encountered a physician who exhibits the following: 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. An exaggerated sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements) 2. Preoccupation with fantasies of unlimited success, power, brilliance, beauty, or ideal love 3. Believes he is "special" 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 6. Selfishly takes advantage of others to achieve his own ends 7. Lacks empathy 8. Is often envious of others or believes that others are envious of him 9. Shows arrogant, haughty, patronizing, or contemptuous behaviors or attitudes For example, someone with traits 1 and 2 might assume that you must be crazy if you think you are sick and he can't instantly see that you are sick. The fact that he lacks empathy (trait 7) means that he won't be able to perceive your suffering and therefore won't bother to go out of his way to seek a less than obvious diagnosis. He might fantasize that you are seeking medical care from him just to bask in his radiance. If you try to reason with this individual, you run smack into a brick wall constructed of traits 1, 4, 7, and 9. Don't waste your breath. And don't pay his bill, either. You did not receive the services you went in for. That list is not my creation. It is the definition of narcissistic personality disorder from the American Psychiatric Association's Diagnostic and Statistical Manual, Fourth Edition (DSM-IV). I think that most of us have met men and women like this. However, most normal people are too charitable to believe, at first, that grownup people can really be this childish. They can be, and if you don't recognize it in time, you can be in for serious trouble. My preferred style of interacting with other people is to reason with them as if they were adults. This approach doesn't work with a narcissist. They are always right, by definition, and you are far too insignificant for anything you say to be of any importance. They are not conversing with you, they are granting you an audience. Perhaps they may let you kiss their ring. I enjoy the company of genuinely brilliant people, but I really dislike dealing with people who are considerably less brilliant than they imagine themselves to be. I shun them socially, not that it makes any difference to them. Nothing I could possibly do would make the slightest difference to them anyway. The difficulty is when you have one of them for a boss or a doctor. The only solution is to change jobs or change doctors. A better solution is to avoid having one as a doctor or boss to begin with. I want a doctor who genuinely cares about his or her patients, who readily admits the limits of what he or she knows, and who isn't afraid to learn something from me.

If you can't tolerate antihistamines, you may be able to get some relief from cromolyn sodium, which is a mast cell stabilizer with a very favorable side effect profile. You can get an intranasal version of it over the counter. It takes a few days to take effect. Before taking any over-the-counter medication, ask your pharmacist if it is likely to interact with whatever else you are taking.

It sounds as if the neuropsychology people at Mayo haven't learned anything in the three years since they told me the same foolish thing. Unless they have actually validated their tests on a POTS population, any conclusions they draw from them would be worthless. If I could have exercised 30 minutes per day, I wouldn't have flown clear out to the middle of nowhere for medical help. Somehow, they manage to ignore the fact that POTS often occurs in people who have been serious athletes. Do the Mayo docs really think that Rochester, Minnesota is such a hot tourist destination, that healthy people would make up a fake medical excuse to go out there? Or do some of them have such severe narcissistic personality disorder that they think we go out there just to bask in their exalted presence? Silly me. I went there for actual medical care, so I came away disappointed. If only I'd gone to Vanderbilt! But at least you got a tilt-table test, which is far more than I got. The one I eventually got at Mt. Sinai, in New York City, showed that I had florid POTS. I really respect the neurologist I saw there. She made it clear that she didn't know everything, and that there are a lot of things about POTS that no one knows. What other stuff did they find? What other kinds of things did they look for but rule out? The most common cause of misdiagnosis in medicine is what they call "premature closure of the differential diagnosis." In other words, no one ever thought of the correct diagnosis, so no one ever ran the tests necessary to detect it. We ought to compile our own list of differentials for POTS. In the meantime, avoid doing anything that could have a misleading psychiatric diagnosis stuck in your file. If they have already put such a diagnosis in your file, insist that it be removed. Once they think you're nuts, they won't listen to you at all.

I have had some really strange migraines. There was no pain associated with them, so it surprised me that I got the diagnosis of migraine. I'd get bad attacks of vertigo (room spinning) and tinnitus (whooshing and roaring in my ears). Once, I got a classic migraine scotoma, but no headache. My nephrologist suspected migraine and sent me to a neurologist. When I finally did get a headache with the spinning and whooshing, I called the neurologist, who offered me codeine. He said he couldn't make the room stop spinning, which was my main complaint. Can't work or drive in that condition. The pain really wasn't bad. In retrospect, I wondered why he didn't offer me a triptan, so I looked it up on the Internet. Apparently, triptans can trigger a stroke in people with basilar artery migraine. Hm. I think I'll take aspirin. Aspirin sounds really good. After my overall health improved, the pain with the migraines got a bit worse and could linger for more than a day. Last fall, I was in the second day of a mild but annoying migraine attack when my sister-in-law offered me a peanut-butter and jelly sandwich on potato bread. I thought, whoa, massive sugar load. But I ate it anyway. Fifteen minutes later, the pain was gone. I mean GONE. No pain, stomach settled, room completely still, no twirly lights when I closed my eyes. Maybe, just maybe, exercise triggers my migraines because my blood sugar drops too far. Now, I eat a huge sugar load (and drink lots of water and eat salt and take two aspirin/acetaminophen/caffeine tablets) at the first sign of a migraine. It seems to help.

Sensitivity to cold could result from a mitochondrial disease. The mitochondria are responsible for generating energy, including body heat. If you have difficulty in maintaining body heat, the peripheral vasoconstriction might actually be beneficial insofar as it would prevent central hypothermia.

It wasn't just the message (or rather, its lack of scientific merit) that I objected to. It was the fact that I had to pay for two round-trip airplane tickets (for my husband and me) and a hotel stay, only to be given a message that the POTSPLACE Web site lists as a myth. If I can walk 20 miles in one day and enjoy every minute of it, I'm not going to waste my time or money on a trainer. And the primary interventions I'm using are nutritional, so it's not as if I'm "giving up" on that. When I went to an exercise physiologist back when I was at my sickest, she found that my lactate threshold was appallinglly low and told me to "make a commitment to exercise." I almost burst into tears when I got that report, because the whole reason I went to her was to find out why I couldn't exercise. It was only a few weeks later that I started on the thiamine--not because of anything she recommended. I tried it out of desperation after reading about someone who had suspiciously similar symptoms due to a thiamine malabsorption problem. After 3 or 4 days of huge doses of thiamine, I was able to go on long walks. About a week later, I had to run a mile to get something to the Federal Express drop box in time for pickup. I even had to carry a 38-pound border collie the last third of the way (he had just come from the shelter, and he went absolutely legless from fear when we got to the noisy street). We made it to the drop box in time, and we made it home without incident. My point is that it is abnormal to have such impaired exercise tolerance to begin with. It's stupid and cruel and probably harmful for health care providers to tell someone who is as sick as I was that the problem is mere deconditioning and that the solution is to "learn to tolerate discomfort" and exercise more. That advice certainly didn't help me at all. It just made me think that the people who said that were ignorant, which of course they were.

Your story sounds like Bronwyn Evans' story: http://www.masmith.inspired.net.au/docs/stories/bronwyn.htm You may wish to have your thiamine levels checked. Thiamine levels are rarely tested unless you are an alcoholic or have a serious intestinal problem and thus would have problems with thiamine absorption. If your thiamine levels are normal, you may wish to be tested for a mitochondrial disorder, especially if there are other people in your family with a similar problem (www.umdf.org). Mitochondrial diseases are treated with huge doses of vitamins and cofactors.

Great news. I'm feeling even better. I had been deteriorating over the past 6 months or so, and I had been dreading going to Europe on a business trip this month. I was afraid that I'd get exhausted from having to sit up in the plane and be knocked flat by a never-ending migraine. I went to a new doctor, who prescribed midodrine, which I hadn't tried before. A friend of mine gave me some licorice extract and licorice teabags from a health food store. Another friend asked her boss (a pediatrician) for suggestions. The pediatrician suggested that I take 800 micrograms of folate twice a day, plus 25 mg of vitamin B6 twice a day, in addition to the 500 mg of thiamine and 800 mg of magnesium I already take. (Plus huge amounts of salt and water.) I also resumed taking Feosol iron supplements. After about a week of the new regimen, my vital signs started to stabilize. Suddenly, I was able to do things (like cleaning my house). I had a couple of days of setback when the really hot weather started, but who didn't? I had no real trouble on the plane. I was able to sleep, but my pulse was about 108 when I woke up. I was able to function for a couple of days of business meetings, then I had a Saturday to myself. I walked around the city, starting about 8:30 am. I wandered back to the hotel about 5:30 pm. Minus half an hour for lunch, that's 8.5 hours of walking. I continued feeling good, and was able to stay on my feet indefinitely. No exhaustion. No migraine. Then I took a few days off with my husband and we walked all over a major European city, even visiting museums. For years, I've avoided museums, because the standing still made me sick. It's far worse than walking. But now I can go to museums for hours. My recovery looks miraculous, but maybe it isn't. I don't have any evidence of a connective tissue disorder or a primary neurologic disorder. For about 20 years, I suspected that my thyroid was failing. Then I suspected my adrenals. But my thyroid hormone levels are normal, and my adrenals are extremely overactive. I have some sort of metabolic disorder, and when I compensate for it, with extra B vitamins etc., I suddenly get magically well. No grueling program of rehabilitative exercise is needed. If I can tolerate activity, I just spontaneously do it. Now, I'm only taking the midodrine in the morning, because I'm dehydrated then. No other prescription drugs. My problem is metabolic. Why can't I find a doctor who can figure it out? At Mayo Clinic, they told me the problem was mental and I just needed to learn to tolerate discomfort and exercise. Morons.