lthomas521

Hi Evie: A heart rate of 129 bpm while you are just tidying up a room could easily be due to POTS. You should definitely seek medical attention for this. It is not normal. The standing up and bending over that you do while tidying up a room pose a serious orthostatic stress. If you do have POTS, that is precisely the sort of activity that would give you the most trouble. Standing in the checkout line at the grocery store is another activity that is easy for a normal person but an ordeal for someone with POTS. Unless you have been bedridden or in zero gravity in a space station for the past few weeks, the problem is probably not due to deconditioning. If POTS were really due to deconditioning, it would be common in office workers and prisoners and rare in athletes, wouldn't it? If it were due to anxiety, it would be especially common in prisoners, wouldn't it? So why is it rare despite the large percentage of sedentary people in the population? Why don't we see outbreaks of it in prisons? Why does it strike so many active people? Even if the problem that you are describing is due to POTS, however, chances are that at least one doctor will tell you that you are being overdramatic, or that the problem is "all in your head," or that you just need to exercise more. If you can't find a local doctor who already knows about dysautonomia, bring the POTS brochure to your appointments. Best of luck!

Recurrent aphthous stomatitis could be a result of Helicobacter pylori, the same bacteria that causes stomach ulcers. It could also be a symptom of Behcet's disease.

I've never had a problem with this one. I must look frightful when I'm really sick, because my friends can always tell just by looking at me.

Sounds like just plain old sleep paralysis, which is common and happens to healthy people, too. http://en.wikipedia.org/wiki/Sleep_paralysis

I'd definitely talk to the pharmacist about the heartburn remedies. Some of them might interact with other drugs. Even Tums could interfere with some antibiotics, for example.

When they say that syndrome X is "prediabetes," they mean insulin resistance. Type II diabetics make insulin, but their bodies don't use it properly. If you already have type I diabetes (because your body doesn't make insulin), you still have to worry about insulin resistance. If you have syndrome X, talk to a nutritionist. From what I understand, the current thinking is not to avoid carbohydrates per se, but to avoid "quick release" carbohydrates, such as white bread and potatoes. They make your blood sugar go up rapidly. The glycemic index is a measure of how fast the carbs from a particular food will hit your bloodstream. The glycemic load takes into account how much carbohydrate a food has, as well as how quickly it is released. Something with a little bit of glucose in it might have a high glycemic index but a low glycemic load. Fiber and fat slow down the rate at which the sugar hits your bloodstream. So if you eat a high-fiber multigrain bread with some olive oil, you'd get much less damage from the same amount of carbs.

Sorry to hear about the nausea. One possibility is that the nausea could be part of a migraine attack. My migraines are triggered by excessive orthostatic stress (too much standing up, or standing up and bending over). Have you tried compression stockings? They might enable you to tolerate longer periods of standing up. I use the waist-high ones. I put them on as soon as I get out of bed and leave them on until I go to bed. (I take them off for naps, too.) You don't need a doctor's prescription to get them. Take them off for when they're testing your blood pressure. I get much more dramatic results on the tilt table without stockings. Licorice tea might help you. Licorice doesn't contain a steroid, but it contains a substance that deactivates an enzyme in your kidneys. That enzyme breaks down cortisol (a steroid), thus keeping the cortisol from acting like aldosterone (the salt-retaining steroid) in your kidneys. When normal people eat too much licorice, their blood pressure goes up, because they retain salt. There's a hereditary condition called apparent mineralocorticoid excess syndrome, in which people don't have that enzyme to begin with. You can get licorice over the counter, but I would avoid using it if you are about to go in for an evaluation, because I don't know how long it stays in the body, and it could mess up your laboratory test results. If you do decide to try licorice, tell your doctor beforehand and make sure you get lots of potassium, because the licorice tends to make you lose potassium in exchange for the sodium you retain.

Do you mean tunnel vision?

Adderall consists of a mixture of amphetamine salts, which work by blocking norepinephrine reuptake (and some dopamine reuptake, as well) and increasing the release of norepinephrine from the presynaptic neuron. If POTS is really due to defective norepinephrine reuptake, wouldn't Adderall do more harm than good?

If you think you have amyoidosis, you really might want to think about going to Mayo Clinic. You are in Minnesota, aren't you?

Florinef's purpose is to increase your blood volume. It does this by making your kidneys retain salt (at the expense of losing potassium and magnesium). My doctor (a nephrologist) measured my blood volume before he prescribed Florinef. Also, he told me in no uncertain terms that the Florinef he was prescribing for me would do no good unless I also ate lots of salt while I was taking it. I also took magnesium supplements and ate lots of potassium. I had no noticeable side effects from taking Florinef. It seemed to do me good. I was weaned off it after I started feeling much better when I started with the thiamine supplements.

The purpose of a vaccine is to give your immune system exposure to some aspect of an infectious organism so that it will be able to recognize it in the future and mount a timely protective immune response. Thus, vaccines usually contain the very bacteria or viruses that cause the disease (sometimes, the vaccine contains the toxic products produced by the infectious organism). Some vaccines contain a "live" organism--i.e., something that can reproduce in the body of the vaccinated person but without causing the disease. The classic example is the smallpox vaccine. For centuries, people in Africa and the Near East inoculated people with material from a smallpox lesion by scratching it into the skin. This approach gave a horrific single lesion at the site of infection, but it usually didn't lead to the typical smallpox presentation. And once you recovered from that, you had lifelong protection against smallpox. Later on, people in Britain noticed that dairy workers seemed to be immune to smallpox, and figured out that it was because they had been exposed to "cowpox," which is caused by a related virus (although they didn't know that at the time because viruses hadn't been discovered). So they switched to using cowpox (vaccinia) instead of smallpox (variola) for the inoculation. Thanks to an international effort and the vaccinia vaccine, smallpox has been eradicated. Polio will be the next disease to be eradicated. When the first polio vaccines came out, there was considerable debate about whether to use the oral or injected vaccine. The oral vaccine was an attenuated or "modified-live" vaccine. The injectable vaccine contained only "dead" viruses. (Viruses don't completely fit the definition of a living organism, so purists refer to "killed" viruses in vaccines as "inactivated." The "modified-live" viruses are "attenuated." Either the oral or the injected vaccines could protect you from paralytic polio, but the oral vaccine could also give you "mucosal immunity," so the polio virus couldn't survive in your intestines and you wouldn't be an asymptomatic carrier. However, you could transmit the vaccine virus, which did make some people sick. Polio was nearly eradicated, but some Muslim clerics in Nigeria in 2003 told their followers that the polio vaccine was part of an evil American plot to sterilize their women. Consequently, the eradication effort stalled, and some infected people spread the infection when they went on pilgrimage to Mecca. From there, other pilgrims took it back home to Indonesia, which had been polio-free since 1995. Tragic. In general, live vaccines are used because they provide more robust, longer lasting protection than killed vaccines. However, only killed vaccines are given to pregnant women and people with compromised immune systems.

Actually, a very intelligent question. If you take antibiotics by mouth, then a large dose of the antibiotic is delivered to the contents of the gut. That could kill some bacteria, thus giving others an unfair advantage. So you could get some gastrointestinal upset as a result. If you were to get a shot that contains a teeny amount of antibiotic, that would deliver a vanishingly small dose to the contents of the gut. Personally, I wouldn't worry about it, unless I had had an anaphylactic reaction to a particular antibiotic in the past. Here's what the CDC says about vaccine additives: http://www.cdc.gov/nip/vacsafe/concerns/gen/additives.htm

Some colleges will accept lab reports showing that you have a positive titer (evidence of antibodies) for the various diseases. If you have a positive titer, you might not need to get another shot. Of course, it may cost more to run the titer than just to get the shot, and you have to get stuck with needles in either event. There are a lot of anti-vaccination zealots spreading fear by wildly exaggerating the risks associated with vaccinations. Occasionally, you can find someone who debunks the zealots. Here are some helpful resources: http://www.pathguy.com/antiimmu.htm http://www.ratbags.com/rsoles/vaxliars1.htm http://www.childrenshealthcare.org/

According to HealthDay, a study of 16 people with Arnold-Chiari Malformation found that 12 of them had sleep apnea. Eight of the 12 had surgery to relieve compression on the brain stem, which resulted in a significant decrease in sleep apnea episodes. Here's the link to the article, which unfortunately is not free: http://www.neurology.org/cgi/reprint/66/1/136

Hi Morgan: The mito thing sounds plausible. Have you tried the nutritional support that is commonly used for people with mitochondrial problems? I have had almost magical results from taking 500 mg of thiamine per day, which suggests that I might have a mitochondrial problem.

Julie: Sorry to hear that your brother does in fact have colorectal cancer. Fortunately, the prognosis for that is considerably more hopeful than it was even a few years ago. Plus, I checked on www.clinicaltrials.gov and found that there are about 50 studies trying to recruit people with colorectal cancer. He might want to participate in something like that. It's probably the best way to make sure that he is getting the latest in treatment. Incidentally, colorectal cancer tends to run in families. Some doctors recommend that blood relatives of people with colorectal cancer should have their first colonoscopy at an age 10 years younger than their relative's diagnosis. http://www.medicalnewstoday.com/medicalnew...9&nfid=rssfeeds

Yasmin contains drospirenone, which is chemically related to the diuretic spironolactone. Yasmin is contraindicated in women with adrenal insufficiency. http://www.findarticles.com/p/articles/mi_..._69/ai_n6048533

The aspartame consists of two amino acids with a methyl group (CH3) attached. It is broken down into scary sounding metabolites, such as methanol and formaldehyde--but so are a lot of natural substances. You'd get a bigger dose of methanol from drinking fruit juice and a bigger dose of phenylalanine from drinking milk. But somehow no one forwards me frantic chain e-mails telling me about people who were magically cured and no longer needing a wheelchair if they gave up milk or fruit juice for 48 hours. None of the warnings I've seen about aspartame seem to have been written by anyone who has any background whatsoever in toxicology. I have seen warnings from genuine scientists about the fact that the high levels of fructose in the modern American diet (largely because of the explosion in the use of high-fructose corn syrup in processed foods) could be contributing to our serious epidemic of obesity and type II diabetes in increasingly younger people. Diabetes is a major cause of blindness, amputation, stroke, etc. So excessive consumption of fructose is probably a major public health problem. Yet no one forwards frantic chain e-mails to warn me about fructose. How strange. If people take the warnings about aspartame seriously, will they give up aspartame and then consume more fructose and other sugars? So I'm worried that the warnings about aspartame could do more harm than good. That being said, I'll admit that I consume virtually no artificial sweeteners anyway. I rarely drink any soft drinks, except Gatorade made from powder, which has real sugar. Here's a recent article about stevia: http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum It said that stevia could improve insulin sensitivity in a rat model. This is encouraging information, given the current epidemic of insulin resistance. However, this same finding suggests that stevia could be very harmful to people with hyperinsulinemic hypoglycemia (and I know that there are POTS patients who have this). So I wouldn't use it unless I knew I had insulin resistance and no bouts of hypoglycemia.

Yes, this topic has come up before. http://dinet.ipbhost.com/index.php?showtop...146entry38146 There is a lot of "smoke" on this, but I haven't seen any fire. I have seen no evidence that aspartame is harmful, but it won't harm anyone to give it up, unless they replace it with sugars, especially high-fructose corn syrup in regular soft drinks. I have seen evidence that many of the people who are trying to frighten us away from aspartame are trying to sell stevia. Stevia is an herb that contains some intensely sweet, virtually noncalorific substance. Stevia extract can be used as a sweetener. However, stevia is not on the FDA's "GRAS" list (generally recognized as safe) because it apparently has some pharmacologic effects. These effects might be beneficial for people with type II diabetes; stevia has supposedly been used in traditional medicine to treat diabetes. However, it could therefore theoretically be harmful to people who have a problem with hypoglycemia, like many of the people who post on this forum. So, I doubt that aspartame is harmful to the body. However, to my great distress, I have learned recently buying chocolate might end up perpetuating human rights violations (including child labor) in Africa, and thus would be bad for one's soul. Evidently, much of the world's chocolate is produced by child labor, especially in the Ivory Coast. The big candy companies, through the Chocolate Manufacturers Association of America, have driven the price of cocoa beans so low that cocoa farm workers cannot afford to send their children to school and may even end up selling their children into slavery. So, I have given up chocolate altogether until I can find a "fair trade" brand. http://www.globalexchange.org/campaigns/fa...ocoa/index.html

Before you have your bone marrow tested, have you had a blood volume test? If you have a low plasma volume (not unheard of among dysautonomia patients) but a normal red cell mass, your ordinary blood test will have a high hematocrit, which gives a false impression of polycythemia. You only qualify for polycythemia if you have an elevated total red cell mass. For more information, see http://www.daxor.com

Never heard of it before. Sounds uncomfortable. Here's an article on it. http://www.findarticles.com/p/articles/mi_...v39/ai_15654108

My brightest moment in 2005 was reading about the research on the norepinephrine transporter promoter demethylation as the cause of POTS. Years ago, a friend of mine said that someday someone would figure out my disease, that there would be an explanation that made everything fall into place. I hope that this is it.

I don't know whether thyroid problems are related to POTS or not. If you have hyperthyroidism (overactive thyroid, also called Grave's disease), you could get tachycardia. If you have hypothyroidism (underactive thyroid), maybe you could have a blood volume deficit as a result. I don't know for sure. Hashimoto's thyroiditis, which causes hypothyroidism, is an autoimmune disease. Maybe POTS is also a result of an autoimmune process. So, theoretically, POTS and Hashimoto's could both be results of the same underlying cause. If you have a condition that looks like a thyroid disorder but your thyroid hormone levels are normal, perhaps you have a mitochondrial disorder. Thyroid hormones affect the number and activity of the mitochondria, which are the "powerhouses of the cell." The other thing to note is that most of us are female, and quite a few of us are no longer in our 20s. So you'd expect a high incidence of hypothyroidism among us, just by random chance, even if we didn't have POTS.

Blood volume and blood pooling are two different things. Blood volume measurements are made by dilution studies. They give you a dose of some radioactive stuff, wait a bit for it to get mixed into your bloodstream, and then measure the concentration of the radioactive stuff in a blood sample. Since they knew how much radioactive stuff they gave you, and they know the final concentration, they calculate the volume into which it has been mixed. They use a radioactive iodine tracer for plasma volume and a radioactive chromium for the red blood cells. Thus, they give you two measurements, your total red cell mass and your plasma volume. If your total red cell mass is low, then you are anemic. It is hard for a lot of doctors to understand this concept. They have been taught to think of anemia in terms of the hematocrit (red cells as a percentage of volume of a blood sample) and hemoglobin content of a blood sample. However, if your plasma volume AND your red cell mass are low, you can have a normal hematocrit and hemoglobin even though you are really severely anemic. If you aren't fortunate enough to be going to a doctor who already understands this, take some literature from www.daxor.com with you to your appointment. If you need to have a blood volume study done, you might call Daxor and find out who has their equipment. Blood pooling refers to blood staying in the intravascular space (i.e., within your blood vessels) but tending to accumulate in the downward (i.e., "dependent") portions of the body. This generally means the legs, but it could also mean the splanchnic vessels (i.e., the vessels of the internal organs of the abdomen). That's why waist-high compression stockings work better than knee-high stockings in counteracting POTS. Blood pooling is a totally different thing from internal bleeding (or what doctors call "third space" losses). In blood pooling, the blood stays inside the blood vessels, where all sorts of mechanisms work to keep it flowing. If the blood leaves the blood vessels, it will probably clot. It won't re-enter the circulation. Orthostatic intolerance (including POTS) is generally attributed to poor return of blood to the heart. This could result from low blood volume (e.g., a healthy friend of mine was POTSy for about a week after he lost a lot of blood when he was hit by a car). Poor return of blood to the heart can also result despite normal blood volume if too much blood shifts downward to the legs under the force of gravity. Of course, if you have low blood volume and blood pooling, you are in double trouble.