lthomas521

I'm a medical writer.

Ramakentesh had told us that the Baker Heart Research Institute people have been working on this topic. Here's a link to one of their articles on the relationship between epigenetic changes to the norepinephrine transporter gene and various illnesses, including POTS. An epigenetic change is a potentially reversible alteration in gene function, without a change in the sequence of base pairs in the gene. In other words, the gene is probably "spelled" correctly, but there might be extra chemicals stuck to it that will keep the cell from using it to make the particular protein for which the gene provides the recipe. The article suggests that this kind of epigenetic change (specifically, extra methyl groups [a carbon with three hydrogen atoms] stuck to the on-off switch part of the gene) could result in panic disorder, essential hypertension, and POTS. If your doctor insists that your POTS is due to an "anxiety disorder," print this article out and take it with you to your next appointment. It explains that the anxiety and the POTS could both be the result of a chemical abnormality in an important gene. So neither condition is "all in your head." http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

No. It's in a bottle, with an eyedropper.

Someone posted their doctor's recipe for a salt-replacement drink a few days ago. I've been adjusting it over the past few days. I think the original was 1/2 tsp of salt 1/2 tsp of potassium chloride (salt substitute) 1/2 tsp of baking soda 4 T of sugar Lemon juice or other flavoring, to taste The result tastes a little like "bowel prep," for any of you who have had a colonoscopy. Also, I don't think I need that much sugar. The first thing I did was substitute Gatorade powder for some of the sugar. Then I cut it down to 1 T of gatorade powder, no extra sugar. This morning, I tried 1 T of sugar but added some licorice extract (with the glycyrrhizin, which is the active ingredient we need)--but no Gatorade powder. Not exactly a taste sensation, but drinkable.

Hi Kimba: Waist-high compression stockings might be more helpful than knee-highs. They're harder to put on and hot, but I've done a tilt table test with them and without them on the same day, and they make a measurable difference in my POTSiness, not to mention my mental clarity.

I'm doing reasonably well. I was able to continue working even while desperately sick, because I have a sit-down type of job that I can do at my own pace. One of my neighbors said yesterday that I look good. He said, "You're pink!" (As opposed to the bluish gray complexion I had when I was really sick.) Of course, I'm still greatly frustrated by functional limitations. I really can't do gardening, and I have to husband my energy carefully. Which generally means that I ask my husband to do most of the chores.

Sounds like that GP is dropping acid, to me. Blame the victim. First we were neurotics just looking for attention, then we were lazy people who just don't have the moral fiber to tolerate the normal sensations associated with exercise. Now we are druggies? This is weird. A few months ago I had a very vivid dream. I dreamed that I was at a doctor's appointment, and the doctor triumphantly told me that they had figured out the cause of POTS. Finally! I thought. Then he said, "It's a result of alcoholism. All you have to do is give up drinking." In my dream, I tried to reason with the doctor. "But I don't drink. I mean, I had one glass of wine at Easter at my parent's house, and that's all I've had all year." "Oh, so you do drink..." It went downhill from there, until the alarm clock mercifully went off. The doctor in the dream was so ill-informed about POTS, and so unreasonable, and so condescending. In other words, the dream was very lifelike!

Wow. Thanks for the recipe. I was just looking for something like that. Do you need to put that much sugar in? Some of us have blood sugar abnormalities.

Have you tried high doses of B vitamins and magnesium supplements? These would help if your problem is related to mitochondrial dysfunction. Ask your doctor of pharmacist. They probably won't object.

I started getting migraines after I had started Toprol, so the Toprol didn't help prevent them in my case! A friend of mine said that her doctor recommended magnesium glycinate supplements as part of her migraine prevention program. I was taking magnesium oxide, but I got some magnesium glycinate. I haven't had any migraines on the days I took magnesium glycinate, so far.

When you say that you are not anemic, does that mean that your total red cell mass is normal? Some doctors think that normal hematocrit means that you aren't anemic. But if you have a plasma deficit and a normal hematocrit, then you have a decreased red cell mass, which by definition means that you are anemic.

I don't know. Has your blood volume been measured? If the plasma volume is low, have you tried increasing your salt and water intake and drinking licorice tea? Have you tried fludrocortisone (Florinef)? If your red cell mass is low, have you tried taking extra iron supplements and extra B vitamins? Have you had B vitamin shots? Those are the cheap and easy things. The next step, of course, is Epogen, which doesn't seem to have helped you. Did it increase your red cell mass at all? When I tried it, it increased my red cell mass but my plasma volume went down even further. I don't know how one would go about getting albumin. Some people have enough trouble as it is getting saline! I don't know if there is a risk of a reaction to albumin. I don't know if they can give that to you at home.

If the light bothers you, is it because your pupils are too big? (The autonomic nervous system is responsible for constricting your pupils in bright light.) I don't have a problem with light.

Could be fibromyalgia, which is probably also a sympathetic nervous system problem, too. Have you tried vitamin B12 injections? I read somewhere that vitamin B12 is a "scavenger" of proxynitrite, and thus it can interrupt the "vicious circle" that may underlie chronic fatigue syndrome and similar disorders. B12 shots are cheap, and will probably do no harm. But you have to beg the doctor for them. http://molecular.biosciences.wsu.edu/facul...ll/pall_cfs.htm

Back when I worked at a veterinary journal, I edited a series of articles on fluid therapy for dogs and cats. The articles explained that if a dog or cat had lost a lot of blood, you could expand the blood volume for a short time by giving a "crystalloid" solution intravenously (i.e., a salt solution like saline or lactated Ringer's). However, the kidneys would notice that the blood was dilute and the excess salt and water would be lost in the urine in a short time. In order to keep the blood volume expanded, you had to give the poor beastie a "colloid" solution intravenously. Colloids are partway between a solution and a suspension, in terms of the size of the dispersed particles. In other words, the molecules in the colloid are big, too big to get lost through the kidneys. So they stay inside the blood vessels (holding water molecules in there, too) until you break them down. In normal blood plasma, albumin is the main protein in blood plasma and is responsible for about 70% of the colloid osmotic pressure (the force holding the water inside your blood vessels). There are several types of "colloid" fluid that are given to expand blood volume in people who have lost blood because of bleeding. The most familiar, of course, is whole blood. But you can also give blood plasma, which is the fluid portion of the blood, minus the red blood cells. Blood plasma has all sorts of useful components, such as clotting factors, that are important for people who have lost blood because of an injury or who have a clotting disorder (e.g., a hereditary disorder like hemophilia or an acquired disorder like an infectious or autoimmune problem that consumes clotting factors). Then there are protein preparations, such as albumin. I don't know if they use albumin from cattle for human resuscitation anymore, because of the concerns about mad cow disease. The other kinds of colloids are complex carbohydrates (dextran, hetastarch). There are several things to consider when choosing which colloid to use. First of all, blood and blood components are somewhat scarce, because they are donated by human volunteers. So they are generally reserved for very serious cases. Another concern is that you want to avoid introducing foreign proteins (either from other people or from animals) into your bloodstream unless it is absolutely necessary. At present, the blood supply is safe from HIV in most places, but there is the theoretical risk of the transmission of other infective agents, such as the prions responsible for mad cow disease in cattle and variant Creutzfeldt-Jakob disease in humans. Also, you just don't need to challenge your immune system by exposing it to foreign proteins unnecessarily. The other option, of course, are the complex carbohydrates. I had asked one of my doctors for hetastarch after he found that I had horribly low blood volume. I think he thought I was joking. I would gladly volunteer for a study in which hetastarch is used to expand blood volume in POTS. I'm not kidding.

When you say it "always hurt," does that mean constant pain, 24/7? Or is that where it always hurts when you have a headache?

Hematocrit is not a relevant criterion for someone with POTS. You can have a normal or even somewhat high hematocrit and still have an abnormally low total red cell mass--BECAUSE YOU DON'T HAVE ENOUGH BLOOD PLASMA, EITHER!!!! Hematocrit is red cell volume as a percentage of the blood sample. If your total blood volume is decreased, but the decrease in red cell mass is proportional to the decrease in plasma volume, your hematocrit will be normal, even though you truly are anemic. Anemia really means a deficit of red blood cells. Hematocrit is just the easiest way of measuring it in a person WITH A NORMAL AUTONOMIC NERVOUS SYSTEM!!! A normal person with anemia would have a low hematocrit. A person with dysautonomia can have severe anemia with a normal hematocrit. Here's an article that describes the blood volume and red cell mass deficits in a group of patients who had severe chronic fatigue syndrome (http://www.ncf-net.org/library/Bell.htm). One of the coauthors is the late, great David Streeten, who literally wrote the book about orthostatic hypotension. Here's another way to think about it. If you want to know whether your car has enough crankcase oil in it, you use a dipstick. You can be a quart low even if the oil itself looks normal if you send it to a lab. A blood volume determination is like using a dipstick. Hematocrit is just looking at a sample. If you want to continue Epogen, you may have to have a blood volume determination. But they might not want to pay for that, either, and you might have to wait until you get seriously ill again before the results are dramatically abnormal enough to convince the "suits" at the insurance company that you need your medicine.

From what I understand, "hypnosis" is nothing more than relaxation and social compliance. Some people are less willing than others to comply with another person's nonsense, which is why some people "can't be hypnotized." I don't suffer fools gladly, so I'm probably one of the ones who "can't be hypnotized," although no one has ever bothered to test me on it, because I'm too thrifty to pay anyone to try. If the study were about the effects of relaxation techniques on autonomic control in people with dysautonomia, I'd be less inclined to think that the whole thing was bogus. It might be a way to find a quick way to diagnose different kinds of dysautonomia. (Dang! Her heart's still racing! Must be something wrong with her!) It's kind of insulting to suggest that POTS or NCS can be hypnotized away. I've already been through the testing where they put your hand in ice water and make you blow into something etc. while taking your blood pressure. Maybe the exercise physiologist should just have dangled a pocketwatch in front of my eyes and told me that I was getting verrry sleeeepy. Maybe I could have been cured there and then! Hallelujiah!

The nicotine in the cigarettes might have been masking some of the POTS symptoms, so a person with POTS who stops smoking might feel worse at first. Another possibility is bupropion, which is an antidepressant also marketed to help people stop smoking. IN the US, it is marketed as Zyban for smoking cessation and Wellbutrin for depression.

Constipation is a well-known side effect of opiate drugs. The American Pain Society recommends that a stimulant laxative be considered for anyone who is taking an opiate. Ask your pharmacist. Fiber-type laxatives are not enough. They might soften the material, but they won't help move it along.

I have found that a good massage can nip a migraine in the bud.

Soluble fiber might be helpful to people who have trouble with their bowels, either too fast or too slow. I read recently on a Web site for irritable bowel syndrome that people with IBS may have worsening of their symptoms if they eat fatty foods or take caffeine or other stimulants (e.g., chocolate) or if they eat a lot of insoluble fiber. But the site recommended soluble fiber. The hard part was getting people to try the recommendation: people with the runs didn't want to take Metamucil, because they thought of it as a laxative.

I think that the problem is more complicated than just the blood pressure and heart rate readings. Even people who have much less blood than they are supposed to have can have normal blood pressure and heart rate readings, especially if they are on a beta blocker to slow the heart rate down. Those readings might be fairly normal because the arteries constrict to maintain blood pressure. Of course, that means that the tissues are getting starved of oxygen and nutrients. If you try to exercise in this condition, you will probably shift over to anaerobic metabolism (non-oxygen-using) very quickly, so you will tire easily and feel crummy afterward. Has your blood volume been tested? How about your cardiac output and anaerobic threshold?

Ask the pharmacist if you can grind it up or something. By the way, always ask before chewing, dissolving, or grinding any medication. Some pills have a time-release feature that would be destroyed if you chewed it or ground it up. So you could get the entire day's dose all at once, which could make you very sick. Also, some pills have a special coating that protects the medicine from your stomach acid.

If you have PCOS and you are overweight, the best thing is to lose weight, by eating less and exercising more. That's often enough to restore normal cyclicity and fertility. Or at least that's the best thing if you don't have POTS. Sometimes POTS makes it impossible to exercise much. PCOS is strongly associated with insulin resistance, as in type II diabetes. So if you have PCOS, you may need to take an insulin-sensitizing agent, such as metformin. I suspect that some cases of POTS result from problems with glucose control and insulin sensitivity. If you have POTS and the symptoms and signs of PCOS (overweight, abnormal facial hair, irregular or absent menstrual periods), you should really see an endocrinologist. I say that even though my personal experiences with endocrinologists have been awful. They all missed the POTS diagnosis and said that there was nothing wrong with me as far as my endocrine system went. Shortly after being told that by an endocrinologist, I saw a nephrologist who found that I was secreting 8 times as much aldosterone as a normal person and prescribed two kinds of hormone replacement for me: fludrocortisone (Florinef) and erythropoietin (Procrit). But if you are having a problem with blood sugar, an endocrinologist might be helpful. At least they're supposed to be.