lthomas521

When you submit an paper to a peer-reviewed medical journal, they send it out to other experts, who review the article for scientific merit. In journals I have worked for, the reviewers supposedly didn't know who the authors were, and vice versa. That's difficult to achieve in real life, because people generally have a good idea of who is doing what in their field. After the reviewers have had their say, the editors of the journal have to decide whether to accept the article, ask for revisions, or reject the article. Once the article has been accepted for publication, there can still be a wait of several months before the paper appears in the printed journal. Some journals make accepted articles available electronically through their Web site as soon as the article is accepted. Others make you wait. As for the sample size of the study: Even if you have only 14 cases and 14 controls in a study, if all 14 of the cases and none of the controls have a particular finding, that is very compelling. I could ask one of my statistician friends to figure out the odds of that happening purely by chance, but I can tell you offhand that it is somewhere between slim and nil. I mean, the odds of tossing a coin and getting "heads" 14 times in a row is 1 out of 2 to the 14th power, which is 1/16384, I think. Of course, a case-control study can only establish a statistical correlation. It doesn't prove a cause-and-effect relationship (i.e., causality). But it is encouraging, because if there is no correlation there probably is no causality. When you do find correlation that is too extreme for you to accept that it has happened by chance, there are three basic possibilities. Factor A may cause factor B, or B may cause A. Or they both might be the results of some other factor. Did the switched-off gene cause the POTS, or did POTS cause the gene to switch off? Or did the switching off and the POTS both result from a third factor? I think that the smart money is on option number 1. My guess is that the cases in the study were carefully chosen to represent hyperadrenergic POTS with no other apparent cause. If so, then it provides some very encouraging news for those of us with primary hyperadrenergic POTS. Of course, it would provide no useful information for people with other forms of POTS. Okay, so it can provide some general encouragement that scientists are starting to take us seriously, which is good. I must say that the suggestion of this breakthrough is the most encouraging news I have heard in quite some time.

The nurse at my gyn's office asked me whether I had circulatory problems. She said that she could tell by the way I was sitting: hunched over with my legs crossed. She said that her brother had a congenital heart defect and used to sit the same way. She said that it boosts blood supply to the brain.

In my experience, the most sensible thing to do about fatigue is to accept it and adapt to it. Pay attention to what makes your fatigue worse and avoid, delegate, or carefully schedule those activities. For example, I let my husband do the grocery shopping. It's too much standing without enough leg exercise. When I have to shop and have to wait in line, I ask someone to hold my place while I sit. I just tell people that the doctor told me to stay off my feet for a while. Another thing is to adjust the way you do things. For example, I lower the ironing board so that I can sit down to iron. Also, remember the old saying: Never put off for tomorrow what you can avoid doing altogether.

Hi Vanessa: I hope the surgery goes well. They'll probably give you some fluids when you get to the hospital, which should make you feel better straightaway.

If you think that your immune system can't handle the dead viruses in the flu shot, how do you think it will handle the huge onslaught of live viruses if you get the flu? Unless you isolate yourself from all human contact, you will probably be exposed to it.

Runny nose, sneezing, and headache sound more like hayfever symptoms than flulike symptoms. Flulike symptoms would include fever, swollen glands, and muscle aches. If you say flulike symptoms when you really mean hayfever symptoms, the docs might go off in the wrong direction. If I perpetually had a runny nose, I'd see an allergist. Allergies can make POTS much worse. When the juniper pollen is in the air in the late winter, I get a very bad flareup of POTS.

Actually an ancient method of torture: crucifixion!

If your blood volume is low, then you will have less blood in which to dilute the alcohol, so that could put you over the limit.

I haven't seen plenty of recommendations to raise the head of the bed, but I haven't seen any data to support it. Some people say that it gives you orthostatic "exercise," and therefore improves your orthostatic tolerance. Other people say that it decreases blood flow through the kidneys and therefore decreases urine output, thus raising your blood volume. Others say that it is really beneficial only for people who have supine hypertension (i.e., their blood pressure becomes abnormally high when they lie down). I've tried it, but it didn't seem to do any good.

If your illness is getting worse for reasons of its own, then it may look as if you are developing tolerance of the interventions you are using to combat it. There's no real way to tell whether the problem is tolerance or progression of the underlying disease--especially since the underlying disease is usually unknown.

If I take a warm bath, I keep the water shallow and prop my feet up so that my legs are out of the water and elevated.

The more sugar I eat, the better I feel. In fact, eating a huge dose of sugar is about the best way for me to stop an impending migraine. Exercise without a huge sugar load can make me feel very sick.

Rust never sleeps. And neither do my kidneys. I try to outrun them by drinking water and eating salt during the day. But sooner or later, I have to sleep, and then they catch up. So I feel far worse in the morning than in the afternoon.

If you have hyperadrenergic POTS, your adrenals are overactive, not underactive. You might look as if you have Addison's disease (muscle weakness, fatigue, low blood pressure), except that people with Addison's usually have a tan, even on parts of the body that are not exposed to the sun. The phony suntan and the excessive urination that results from loss of salt through the kidneys are why Addison's disease was once called "bronze diabetes." Addison's disease is much less common than it once was. The main cause of it years ago was tuberculosis, which often destroyed the adrenal glands. Now, most cases of Addison's disease are the result of an autoimmune process that attacks the adrenals. In hyperadrenergic POTS, the adrenals may simply be unable to compensate for low blood volume that results from some other cause. The extra salt and the licorice or Florinef are supposed to boost your blood volume, which might give your poor overworked adrenals some rest. Why do people with hyperadrenergic POTS have low blood volume to begin with? I really really really wish I knew.

I've had several tilt table tests. They weren't particularly uncomfortable, even though my vital signs were very abnormal during them. Of course, I don't faint. The only test I've had that was seriously uncomfortable was the blood volume test, the part where they take out a huge volume of blood and tag it with radioactive chromium. Make sure that you are lying down for that. During the first one, I was acutely miserable as soon as they took the big blood sample. I didn't care if they were making my blood radioactive. I wanted it back! I made sure I was lying down the other times I took it. I passed right out during the last one and didn't wake up until they put my blood back.

Anyone with POTS and gallbladder disease should probably be evaluated for celiac disease, especially if anyone else in the family also has gastrointestinal problems.

Yes, formaldehyde and methanol are breakdown products of aspartame. And yes, aspartame does contain phenylalanine, which is a problem for people with phenylketonuria. However, I doubt that this is a problem for nearly anyone with POTS. In toxicology, "the dose makes the poison." In other words, it is the amount of formaldehyde or methanol that matters. The amount of phenylalanine you would get from drinking diet soda is far less (by a factor of about 30, I think) than you would get from drinking a glass of milk or having any other protein-rich food. You would get more methanol from drinking fruit juice than from drinking diet soda sweetened with aspartame. So all the hysteria on the internet about formaldehyde and methanol from aspartame is just that--hysteria. Notice that none of it comes from actual chemists or toxicologists. Much of it is from people who are selling stevia, which is an herbal sweetener that hasn't been approved by the FDA as a food additive because it evidently has effects on the metabolism. Of course, much of the reassuring "aspartame is safe" messages come from people who are being paid by the manufacturer. Products that contain aspartame have a warning about phenylalanine. People with phenylketonuria can't metabolize phenylalanine. Consequently, it builds up in the system and causes brain damage that results in severe mental retardation in early childhood. People with phenylketonuria have to follow an extremely restrictive diet. Phenylketonuria is now diagnosed at birth. If you have it, you will already know it, because your family will have been watching everything you put in your mouth since you were an infant. Or else you are already severely retarded and have a peculiar body odor. That being said, I have to admit that I consume very little aspartame. But that's because I don't drink much soda to begin with and I don't have a problem with high blood sugar. However, a lot of people with POTS do have weight problems or blood sugar problems, and I wouldn't want to frighten them away from aspartame needlessly. If you think you have a problem with aspartame, it would be fairly easy to test. Get some of those empty capsules from the health food store. Have a friend put aspartame in some of them and saccharine or something else in other ones to serve as a placebo. If you get the same effects from the placebo capsules that you got from the aspartame capsules, then your problem isn't aspartame.

Do you mean supraventricular sinus tachycardia? "Tachycardia" just means fast heart rate. "Sinus" means that the heart rate is being regulated by the sinus node, which what is supposed to happen. The sinus node is a group of specialized heart cells that act as a pacemaker. "Supraventricular" means that the tachycardia is being regulated by some combination of activity from the sinus node and the atrioventricular (AV) node. Here's a useful introduction to electrocardiography for nurses: http://kabayim.com/ECG%20Basics.pdf#search...achycardia' Notice that the sinus tachycardia tracing looks normal, but just speeded up. I think that this is pretty much what happens in most people with POTS, so the diagnosis of sinus tachycardia or supraventricular tachycardia is consistent with a diagnosis of POTS. The heart itself might be normal, but it might have to compensate for your body not having enough blood to go around. Or maybe you do have enough blood but it's staying in your legs when you stand up, so the amount that is returning to your heart is insufficient. Or maybe you have a problem with too much epinephrine. That's for the doctors to figure out. Most of these things are regulated by the autonomic nervous system, which is why POTS is generally considered to be a dysautonomia. Your doctor should have explained all this to you. I think it would be best if they also give you something to take home to read, because it's often difficult to absorb information if you've just been through a tilt-table test.

Colloidal fluids (e.g., albumin and hetastarch) are given to people who have lost a lot of blood. The particles of the colloid are so large that they stay inside your blood vessels, holding water in there with them. In fact, whole blood could be considered a colloid. Intravenous colloids provide a longer lasting increase of intravascular volume than would a crystalloid solution, such as saline. Emma Nicholson has written to POTSPLACE about the improvements she experienced after she received albumin. Has anyone else received colloids for the treatment of POTS?

I take 800 mg of magnesium, as magnesium oxide, every morning. It seems to help a little with my fatigue, but the main thing is that it has put an end to a lifelong struggle with slow-transit constipation. My nephrologist was astounded when I told him what dose I was taking. He said, "Aren't you having some, um, intestinal reaction to that?" Apparently, that dose would give a normal person the galloping trots. My internist says that it's really hard to overdose on magnesium, because if you take too much, you just get diarrhea. He said that if they have to raise someone's magnesium level for some reason, they have to give it to them intravenously. If you do get diarrhea, it may cause you to lose too much potassium, so be careful about that. Why B12 supplements? Do you have macrocytic anemia? If so, are you getting other B vitamin supplements, too? What about iron. Don't take iron supplements unless you are positive that you don't have iron-overload disease, which can cause anemia, strangely enough.

Sounds like Cushing's syndrome to me. Have you been on steroids? If not, your body might be making too much cortisol on its own. Best of luck finding the diagnosis.

Has anyone in your family been treated with thyroid hormone supplements? We know that thyroxine increases the activity and number of mitochondria, but I don't know whether anyone has shown that use of supplemental T4 (with or without T3) does any good for people with various mitochondrial diseases. There are a lot of people who have the symptoms and signs of thyroid deficiency but don't have abnormal T4 or TSH levels. I have long wondered whether some of these people have mitochondrial disorders and whether the supplemental T4 and T3 might help them function better. You will probably have to go to several doctors before you can find one who would be willing to give this a try. If possible, try to find an endocrinologist with a PhD as well as an MD degree.

Hi Dawn: I am really sorry that your family has been so badly afflicted! Whether your children will be able to have children without running the risk of passing on the disorder depends on what the disorder is. Has any physician shown any interest in figuring that out? It sounds to me as if your family might have a mitochondrial problem. If the problem is in the mitochondrial DNA, the problem would pass only from mother to child (the father doesn't contribute mitochondrial DNA to the offspring). However, it is possible to have a mitochondrial problem resulting from nuclear DNA, which you can get from either parent. Some mitochondrial diseases are manageable, but they have to be properly diagnosed first. The United Mitochondrial Disease Foundation might be able to give you more information: www.umdf.org. Recently, some fertility researchers described a case in which the nuclear DNA from a man and a woman were placed in an enucleated egg cell donated by a healthy woman. This would enable people to have their own genetic children without passing on mitochondrial DNA problems. So there is hope for your children to have healthy children, even if they do have a mitochondrial problem.

Vertigo can be part of a migraine attack.

I figure that an ashy blue-gray color would be appropriate, but then it wouldn't show up against my skin!