lthomas521

What do you mean by "100 points"? Do you have signs and symptoms of anemia? Are you cold and tired, etc.? I'm assuming you have POTS. Do you have blood volume problems as well? Why are your periods so heavy? Do you have a clotting disorder? Some clotting disorders (e.g., von Willebrand's disease) do occur in females and are often undiagnosed. Because they run in families, the women who have them often think that such heavy bleeding is normal, because their mother or sister had the same problem. If your periods are heavy, you may get some relief by going on a hormonal contraceptive. The progesterone portion suppresses the growth of the endometrium, which is what is shed during your menses. The less the endometrium grew during the preceding few weeks, the less you will bleed during your period. Of the available hormonal contraceptives, I think that the vaginal ring gives you the lowest dosage and the best cycle control. As my sister always said, "If men got periods, there'd be a cure by now."

"Specifically, it is suggested that a migraine attack is characterized by a relative depletion of sympathetic norepinephrine stores in conjunction with an increase in the release of other sympathetic cotransmitters such as dopamine, prostaglandins, adenosine triphosphate, and adenosine." http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=14979884 So is this why I'm prone to getting migraines if I have been spending too much time on my feet?

The heart rate response to orthostatic stress in POTS patients is not caused by anxiety, but is a physiological response that maintains arterial pressure during venous pooling! Who would have guessed? http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

The hemoglobin value you described tells you how many grams of hemoglobin you have per deciliter of blood. It doesn't tell you anything about the total amount of hemoglobin you have in your bloodstream. After I had been taking Epogen for a while, I had a hemoglobin of 15 g/dL, which sounds pretty good for a woman who is still having periods. However, a blood volume determination showed that my plasma volume was extremely low, so I was really anemic, despite a respectable-sounding hemoglobin. It also explained why I looked and felt like a zombie. If you dilute your blood by drinking huge amounts of saltwater or getting saline IVs right before the test, your hemoglobin level will be falsely low. If you are dehydrated or otherwise volume depleted, you may have a falsely high hemoglobin level.

I know that people who have been bedridden for an extended period because of some sort of prolonged illness are at risk for orthostatic hypotension, but when I've gotten run down from too much orthostatic stress (i.e., too much time on my feet), a couple of days of bed rest do me a world of good. I end up more energetic and less POTSy. Anyone else have that experience?

Notice that the proponent of the "alternatives" said that such "therapies" "have been used" or "have been employed." That's a far cry from saying that they did any good. If someone is willing to do these therapies for free as part of a research protocol that has been approved by an institutional review board, I might consider it. Otherwise, I don't think I'd bother. Of course, licorice is an "herb," and it "has been used"--but it probably works, at least for boosting blood pressure. In healthy people, licorice intoxication causes hypertension.

I started taking the thiamine out of desperation, because I was so sick. I read about a woman who had had the same symptoms as me but due entirely to a secondary thiamine deficiency (she can't absorb it from her food and has to take it by shot every day). My doctor was on vacation, and my records didn't say anything about thiamine tests, so I went to the health food store and got some. I took 300 mg on a Friday afternoon, and the following day I was able to do light housework for several hours. Amazing! I continued to improve, and subsequently stopped taking the beta blocker and Florinef. Later, I got further improvements by adding other B vitamins and zinc. In studies of diabetics, fairly large doses of thiamine had no adverse effects whatsoever, and some of those subjects had preexisting kidney problems. Thiamine helps prevent blindness, kidney failure, and peripheral neuropathy in diabetics. My anaerobic threshold was measured in the exercise test that went along with my cardiac output test. They put me on an exercise bike and made me breathe through a tube. My heart was perfectly normal, but my anaerobic threshold was astonishingly low. The exercise physiologist suggested that I exercise to solve the problem. And to think that the reason for the test was that I COULDN'T TOLERATE EXERCISE!!!!! Strangely enough, the exercise intolerance pretty much vanished within a week after I started taking the thiamine. I get really sick within 2 days if I stop it.

I suspect that the exercise intolerance in CFIDS might ultimately be due to a mitochondrial problem. The low red cell mass and lousy circulation in POTS patients probably explains our fatigue and exercise intolerance. What alarms me about what Primetime described is the 4 to 5 days of illness after an attempt at areobic exercise. When you do aerobic exercise, your cells use their mitochondria to extract the energy from glucose or fats and use that energy to turn ADP into ATP (adenosine diphosphate and adenosine triphosphate, respectively). Your cells then use the ATP as an energy source, turning it back into ADP. If you put extreme energy demands on your system, and your mitochondria can't keep up with the demand for ATP, then your cells might steal some of the energy from ADP and turn it into AMP (adenosine monophosphate). You can't reverse this reaction, and you just have to wait until your body makes more ADP from scratch, which takes several days. So far, the only way that I have heard of to deal with this problem is to use some supplements that support the activity of the mitochondria. You can find out more about this at www.umdf.org Notice that I said "aerobic exercise." Mitochondria use oxygen. If you don't have enough oxygen being delivered to the cells, then your cells will have to switch over to anaerobic metabolism, which produces lactic acid, or lactate. Lactic acid is part of what makes your muscles sore for several days after heavy or anaerobic exercise. Your "anaerobic threshold" is the degree of exercise intensity at which lactic acid starts to build up in your bloodstream. My anaerobic threshold was very very low when I was very sick, right before I started taking huge thiamine supplements. Whether this was because of my low red cell mass or a mitochondrial problem is a very interesting question. The other possibility that comes to mind is hypothyroidism. Have you been checked for that?

Licorice has been known since ancient times to help you retain water and salt. That's why Muslims have traditionally used it during Ramadan, when they have to refrain from eating and drinking during the day. Licorice is also notorious for causing hypertension. Most of the literature on it is reviews of cases of "licorice intoxication" (i.e., hypertension caused by eating too much licorice). If you can't tolerate Florinef, maybe licorice may help you. You'll still have to eat tons of salt, plus some extra potassium and maybe magnesium supplements, just as if you were taking Florinef. But you can get licorice teabags and extract from the healthfood store. Make sure that it is NOT deglycyrrhizinated (glycyrrihizin is the active ingredient that you want). For more information on mitochondrial disease, see www.umdf.org

You should report this adverse event to the company that makes the drug.

The ketogenic diet is a desperation measure for children with seizures that don't respond to medication or for children who cannot tolerate the antiseizure medication. It basically mimics starvation imo, which has been known since Biblical times to reduce seizures. It is hard to follow, and it tends to slow growth in the children who are on it. Unless I had intractable epilepsy, I wouldn't consider it, especially since it tends to cause dehydration and constipation, which are serious problems for most people with POTS.

Have you been evaluated for a mitochondrial disorder? Here's an explanation of why people with mitochondrial problems are sick for 4 or 5 days after trying to exercise: http://www.drmyhill.co.uk/article.cfm?id=381 If you have a mitochondrial disorder or other type of metabolic disorder that is causing exercise intolerance, you can't "exercise" your way out of it. You fix the underlying problem, then think about exercise for rehabilitation. For example, if you have a diabetic patient who has taken too much insulin and whose blood sugar has crashed, do you put that person on a treadmill and make him or her exercise? No! You put him or her in a hospital bed with a glucose IV. Okay, so if you have a patient who is crashing and you can't figure out why, don't pressure him or her to exercise, especially if you know that it makes the person even sicker for days afterward. Have you had a blood volume test? If your blood volume is very low, which is common in bad cases of POTS, you can get chest pain from the heart "beating on empty chambers." Are you using Florinef or licorice or Epogen to expand your blood volume? Have you had a cardiac output test?

Personally, I suspect that blocking norepinephrine reuptake does exactly nothing for a POTS patient. If you don't have norepinephrine transporters to begin with, then you don't have the target that the drug is supposed to work on. That would be like trying to ring a doorbell that isn't even there. Maybe the SNRI is having some sort of an effect by reducing serotonin reuptake. Some SSRIs are relatively activating, so maybe that gives some people some benefit. When the theory of the norepinephrine reuptake was first suggested by someone on this forum, I asked a friend of mine who does antidepressant research what would happen to someone who doesn't have any norepinephrine transporters. First he said, "No norepinephrine reuptake? How could someone live like that?" I said, "Not well, evidently." He said, "That would be like taking massive doses of some kinds of antidepressant." I said, "No wonder I'm unreasonably cheerful."

On my first doctor's visit, the GP said to me: There is nothing the matter with thee. On my second doctor's visit, the endocrinologist said to me: Your thyroid is lumpy, but there's nothing the matter with thee. ...

A few years ago, a pair of identical twins who had had POTS for many years were found to have a "loss of function" mutation in the gene that carries the recipe for making the norepinephrine transporter, which is a protein found on the outside of some cells, including nerve and muscle cells (as well as some white blood cells). There was a misspelling in the recipe, so the protein that was made didn't work properly. In a normal person, about 80% of the norepinephrine (which is a "fight or flight" neurotransmitter and hormone, like adrenaline) released by a nerve cell gets picked back up by the norepinephrine transporters of the cell that secreted it. The other 20% "spills over" into the general circulation. If you have a defective norepinephrine transporter, the norepinephrine stays in the synapse longer, so it can have more of an effect. Plus, more of it "spills over" into the bloodstream. So, if your norepinephrine transporters are malfunctioning, or missing, then you will have higher levels of norepinephrine in your blood than a normal person would, especially when you are standing up. That's why they take samples while you are lying down and standing up. The loss of function mutation in the twins wasn't found in any unrelated people. Instead, researchers at Baker Heart Institute in Australia have found that the gene for the norepinephrine transporter is normal, but it is accidentally "switched off," so it is not being used to make the norepinephrine transporter. Some of the people with this finding get panic disorder, and some get POTS, and some get both. http://content.nejm.org/cgi/reprint/342/8/541 http://www.mc.vanderbilt.edu/reporter/index.html?ID=1039 http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

That's very encouraging. You have neurocardiogenic syncope? The research that I've seen on tilt training recruited young people with neurocardiogenic syncope, so it makes sense that it would help you. What do you mean about your hip sockets? Do you have Ehlers-Danlos syndrome? Are you using a mast cell stabilizer for the allergies?

If you've had whooping cough in the past, you probably won't get the severe clinical syndrome again. But you can catch the infection again, have minimal or no symptoms, and pass it on to others. Personally, I feel that the minimal risk that we incur when we get our vaccinations is our duty to humanity. Some people can't or shouldn't be vaccinated, and others don't mount an immune response when they do get vaccinated. So the rest of us, by contributing to "herd immunity," can help protect them.

Congratulations! It's a major advancement for public health that the students will be taught about EKGs by someone who has actually heard of dysautonomia!!! The classic treatment for stage fright is, of course, a beta blocker.

In October, 2006, the CDC's Advisory Committee on Immunization Practices voted to recommend a combined form of diphtheria, pertussis, and tetanus for adults in the US. http://www.cdc.gov/nip/vaccine/tdap/tdap_adult_recs.pdf Ironically, there actually was some risk with an older form of the pertussis vaccine, which has since been replaced. However, even then the risks of death and illness were far higher among nonvaccinated people.

I just got an e-mail from a friend I haven't heard from in a few years. He has been home sick for several weeks with a diagnosis of pertussis (whooping cough). He has been sick since early October. He can't sleep at night because of the horrible paroxysms of coughing and also because of urticaria (hives). He can't even talk, because that triggers coughing spells. I saw somewhere that IgE antibodies to pertussis can cause histamine release, especially in someone who already has allergy problems, so that might explain the urticaria. I also wonder whether cough medicine is making the urticaria worse, because codeine and dextromethorphan both tend to cause histamine release. He's also having weird autonomic effects (e.g., he can't sweat). Whether it's from the disease, or from whatever medications he's on, I don't know. He was healthy until all this started. If pertussis can disable a healthy person for several months, I can't begin to imagine what it would do to one of us, or to someone with asthma. I know that pertussis is often lethal in infants and may be a cause of death in some cases of SIDS (sudden infant death syndrome). You get a pertussis booster when you get your "tetanus shot" booster. You may want to ask about a booster the next time you have a doctor's appointment.

Yes, "Wiggles" is a silly name, but he's male! Would anyone dare say that he's quitting his show-business career so that he can go to an occasional doctor's appointment, for the attention?

I walk a total of about 2 miles every day, because I take public transit to work. If I'm feeling good, I'll climb the stairs (10 flights) when I get to the office. Of course, now that I've been getting so much exercise, my "no blood in brain when I stand up" spells are worse. Or maybe it's just because it's winter, which has always been my worst time. I can't do anything that involves prolonged standing, bending at the waist, deep breathing, etc. So I can't do gardening or much housework. I can't sing or play a wind instrument. I'm really pushing the envelope when I wait for the bus, because there's no bench. So I walk around, which kind of annoys the other people. The only prescription drug I'm on is midodrine, and I only take that first thing in the morning. I have no particular trouble sleeping. My challenge is staying awake! If I have too much orthostatic stress, the fatigue and sleepiness gets really bad.

I had good experiences at the autonomic lab at Mt. Sinai, in Manhattan. They treat adults. They put me on a tilt table a couple of times and measured my norepinephrine levels while I was lying down and standing up. They told me that I have a clear case of POTS but that I was managing it well with aggressive use of "conservative measures." None of the nonsense and disrespect that I got at Mayo. Your case sounds more interesting than mine. Maybe they can help you.

Comments like that are an attempt to dominate you. Don't let him have that power. I guy I used to go out with before I met my husband told me that I could easily have my nose reshaped surgically. (There is nothing wrong with my nose, by the way.) "Or I could just find a fellow who likes my nose," I told him. That shut him up! Several years ago, when I weighed about 125 pounds, I spent some time in Puerto Rico. One of the local guys explained to me that I was really too skinny to be considered attractive in Puerto Rico. He said, "We like women who are built like women." Both my husband and I thought it was very funny. So why does your acquaintance dislike women who are built like women?

It's comical that you can get a diagnosis of orthostatic hypotension when your pressure drops to 100/80. During one doctor's appointment, mine started at about 100/60 sitting and dropped to "only" 85 for the top number. The doctor (an endocrinologist and a total idiot) told me that the systolic number has to drop 20 points to be OH, and mine dropped only 15, so therefore I wasn't sick. Your pulse increase is large enough to be POTS, but your blood pressure goes from "prehypertension" to a reasonably normal value. So even though you do not technically have hypotension when you are standing up, you qualify for the diagnosis of orthostatic hypotension. So therefore you have OH, not POTS. I had genuine hypotension when I stood up, but I supposedly did not have orthostatic hypotension. And they think that they are smarter than I am, and thay maybe my problem is that I'm nuts? I'm pretty sure I've had the same disease all along, and yet sometimes I have qualified for the diagnosis of OH (such as the day my standing blood pressure was 48 over undetectable) and most of the time lately I have qualified for a POTS diagnosis. So in my case, arguing about OH vs POTS is like the blind men arguing about the nature of the elephant. "The elephant is like a snake! No, it's like a spear! No, it's like a leaf! No, it's like a wall! No, it's like a tree! No, it's like a rope! No, it's soft and mushy!" Have you had your blood volume tested? Your relatively high blood pressure readings may be a way of compensating for hypovolemia. Here's a link with useful information: http://www.anapsid.org/cnd/diagnosis/oi.html