lthomas521

Hi Elizabeth: Sorry to hear that your son is in such horrible pain! Pain is not necessarily normal in POTS. Pain is not necessarily normal, period. Why on earth is he in such pain that he is suicidal? Something is not right. Is there a spinal problem? That could account for autonomic problems and excruciating pain. Maybe the only thing they can do in the short run is ramp up his morphine until he is comfortable. Have you seen a pain specialist? Many people have excruciating pain with no identifiable cause. The fact that the doctors aren't clever enough to figure out the cause of the pain is no reason to be stingy with the pain meds.

I am an advocate of evidence-based medicine, which means that I think that recommendations about medical interventions should be based on properly designed randomized controlled studies wherever possible. For centuries, the medical community in Europe (and eventually the United States) was virtually unanimous in their endorsement of bloodletting for the treatment of all sorts of diseases (http://www.mtn.org/quack/devices/phlebo.htm). It made sense according to their understanding of how the body worked, and they could cite lists of patients who recovered after they bled them. Eventually, a few brave dissenters used statistical methods to show that bloodletting was ineffective and in fact did more harm than good. Now, it is only used for people with iron overload disease. So the fact that nearly all physicians recommend something doesn't impress me, if there is no evidence to support the recommendation. The blanket recommendations of "graded exercise" for chronic fatigue syndrome patients made me suspicious, because of the poor methodology of the research that was presented in support of it. I think that exercise is potentially dangerous for a person who is sick or whose vital signs are unstable because of a neurologic problem and should be undertaken with extreme caution and preferably only after the underlying problem is addressed. The paragraph from Dr. Rowe actually supports that. Dr. Rowe noted that "exercise can make NMH or POTS symptoms worse in the period before effective treatment has been found." Notice that the girl he described started to be able to exercise AFTER they improved the medical management of her condition. Also, they were careful to point out that she chose a method of exercise that does not make her feel lightheaded. This goes along with my rule of thumb: don't sacrifice your brain in order to tighten your abs. I'm not saying that people with POTS shouldn't try to exercise. I'm saying that recommendations about exercise should be thought out as carefully as a prescription for a potentially dangerous drug. The focus should be more on overall level of activity and functioning, and not on traditional exercise goals for healthy people. I think it is unrealistic and potentially harmful to expect a gradually increasing level of fitness, when we don't know why the person is sick to begin with. I'm also doubtful that the exercise itself will do much good. If it were that simple, most of us would never have gotten sick or wouldn't have stayed sick for long. I'd like to know more about what the physical therapists have found. I learned very early on (from a licensed practical nurse) to tilt my head forward if my vision blacked out when I stood up too fast. I learned from another nurse (one whose brother had a congenital heart defect) that a lot of my "bad habits" are actually maneuvers that improve circulation to the brain: crossing my legs when I sit, slouching, hunching forward when I sit. I have spoken to several licensed physical therapists, and none of them had ever heard of POTS or had any idea whether they could do me any good. Have the physical therapists from Baltimore published anything about their work?

There's more than one component to the urinary incontinence problem. First of all, people with POTS tend to drink a lot of water, so we produce more urine than most people. Consequently, we're more likely than most people to have a full bladder at any given time. So we're more likely to "spend a penny"--or maybe a whole roll of quarters--when we sneeze. Since we can't really cut down on fluid intake, the only thing you can do about that is to go to the bathroom more often. Helpful hint: if you feel the urge to sneeze, press on your upper lip, just below your nose. This might stifle the urge to sneeze long enough for you to make it to the bathroom for a preemptive pee. Second, urination is controlled by the autonomic nervous system. So we're more likely than other people to have problems either emptying the bladder, holding our urine. or both. If you are having problems with urine retention, it might be because of dysautonomia, or it could be a side effect of a drug that you are taking, such as an antihistamine or antidepressant. Talk to your pharmacist about this problem, then tell the doctor what the pharmacist said. If you are having problems with incontinence, the problem could be neurologic or anatomical. Or both. Talk to the doctor about this problem. There are surgical procedures and drugs that can help the problem. Sometimes, the problem is weakness of the muscles of the pelvic floor. In that case, you may get better urinary control (and possibly a more rewarding sex life) by doing Kegel exercises, in which you tense up and then relax the muscles that you use to stop your flow of urine when you urinate. If you are an older male, the problem could be your prostate. The prostate tends to enlarge with age and cause outflow obstruction. So you can't pee when you want to, and you can't completely empty the bladder when you do pee. If the problem gets bad enough, you might end having major "accidents" when your bladder muscles finally overpower your outflow obstruction. A urologist might be able to fix this problem with a simple surgical procedure. By far the quickest and simplest solution is to wear those pantyliners.

I just did a quick search on PUBMED and couldn't find any clinical trials of exercise in people with POTS. When I get back to work after the holidays, I'll be able to do a better search on other search engines. Basically, I'm looking for any study in which the subjects had a diagnosis of POTS. These would have to be people who come from the general population and are seeking medical care because they are disabled by POTS. Not astronauts, not elite athletes, not military recruits who made it through boot camp but faint on the parade ground, not normal sedentary volunteers, not normal volunteers who have orthostatic hypotension induced by 90 days of enforced bed rest, not elderly people who have ordinary orthostatic hypotension because they are taking all sorts of prescription drugs. Those people don't have what we have, and their response to exercise is entirely irrelevant to our situation. The study would have to be of the effects of an exercise program, not just a one-day study that shows that people with POTS are deconditioned. The outcome measures would have to be not just exercise variables (e.g., how much the person can bench press) but changes in measures of fatigue and disability, as well as cardiovascular measurements. I want to see improvement in vital signs and ability to perform activities of daily living. I couldn't care less whether I have "tight abs" or "buns of steel." I just want my life back, and I don't want to lose any more brain cells than I already have as a result of the blood supply to my brain being compromised. The results would have to be analyzed on an intent-to-treat basis, not just a per-protocol basis. In other words, I want to know what happened to everyone who was randomized to the exercise group, not just the people who managed to finish the exercise protocol. Who dropped out early, and why? Did the people who dropped out end up more disabled than they were at baseline? These are important questions. I will be astonished if anyone can find a study like what I've just described. I doubt that anyone at Vanderbilt or Mayo would have done such a study, because the typical POTS patient only gets to stay there for a couple of days. The study would take weeks or months. I would willingly sign up for such a study and try my level best to comply with the protocol, but I haven't seen one to sign up for. But until such studies have been done, you can't make any sort of evidence-based recommendation on exercise for POTS patients. No, I would not accept a review article in which some expert expresses his opinion that exercise is a good thing--unless that statement is backed up by a reference to a clinical trial. Even then, I'll have to review the clinical trial. My theory is that POTS is not caused by deconditioning, and that exercise won't cure it and probably won't even improve it much. If you manage the POTS well enough, the person's exercise tolerance and activity level will probably improve spontaneously. I think that POTS can cause exercise intolerance, and that if you try to be tough and exercise despite symptoms of cerebral hypoxia, you can permanently damage your brain.

The really important thing about exercise if you have a disease that causes exercise intolerance, is not to overdo it. Don't try to stick to some externally determined schedule of what you think you should be able to do. Don't let someone "nag" you into overexertion. Don't "nag" yourself, either. Don't expect that you will be able to perform at ever-increasing levels. Pay very careful attention to the signals that your own body is giving you. And especially if you have POTS, if you feel that you aren't getting enough circulation in your brain, lie down! The single most important thing is to protect your brain. Has anyone seen any real clinical trials of exercise in POTS patients? I haven't. The only one that comes close involved military recruits with some degree of orthostatic intolerance. It didn't enroll disabled people from the general population. It enrolled military recruits: people who were functional enough to join the military and well enough to go jogging. Plus, they were a heckuva lot younger than I am. I don't remember the gender breakdown of the subjects in the study, but most people with POTS are female. So I don't think you can apply findings from a population of 20-year-old men to a woman in her 40s. The studies of exercise in CFS patients evidently have serious methodological flaws (i.e., they included a lot of people who didn't really have CFS to begin with). The more stringent the inclusion criteria for the study, the less benefit was shown. Some people have exercise-limiting illnesses that wax and wane for reasons of their own. When people with such an illness are in an improving phase, they are likely to increase their activity level and may actually start a successful exercise program. But which came first? The improvement or the exercise? I think that many people who are inexplicably ill cannot exercise much, and many people who are inexplicably recovering are suddenly able to stick to an exercise program. Their participation in an exercise program might actually be a sign of improvement, not the cause. So take testimonials with a grain of salt. Just remember: The prime directive is PROTECT YOUR BRAIN.

When you have an MRI, you have to hold perfectly still for a long stretch of time, all the while the machine is making horrible loud banging noises. When I had one recently, I pretended that I was an actor in a science fiction movie. My character was in suspended animation, so my job as the actor was to remain perfectly still. The machine was just a stage prop, and we weren't really looking for nasty problems in my brain. My goal was to impress the director by keeping so still that we could shoot the entire scene in one "take." I didn't mention any of this to the technician, but she marveled at how still I remained during the whole procedure.

Hi Ernie: Maybe we can get you a t-shirt that says: "This is what a person with an INBORN ERROR OF METABOLISM looks like. And some of my relatives have exactly the same thing!" I want to make one up for myself that says: "I don't have enough blood going through my brain. What's your excuse?" For anyone who uses a wheelchair because of POTS or related problems, there's a t-shirt that says "I can stand up! It's a miracle!" http://nopityshirts.com/

Here's an article about tyramine and orthostatic intolerance http://circ.ahajournals.org/cgi/reprint/99/13/1706

Cortisol, which is a stress hormone, can make your sugar go up.

If POTS makes you faint, then you have POTS and NCS, I think. Some people with NCS faint but don't have POTS in between fainting episodes.

If I were lucky enough to have Dr. Grubb as my doctor, I would do exactly as he recommended. If you don't think you are sick enough to take medication, talk to him about it.

Hi Ernie: What an ordeal! But at least they can't tell you that the results are "normal," so they must have learned something from it!

Spells of bad dizziness can be related to migraine, even if you don't get headaches.

Finrussak, the interventions you described in your case don't provide any evidence against the norepinephrine transporter deficiency theory, not even in your own case. If someone doesn't have norepinephrine transporters to begin with, then taking something that would alter the activity of the norepinephrine transporters (if they existed) should have no effect, at least as far as norepinephrine reuptake is concerned. If they don't exist, you can't increase or decrease their activity. That would be like turning the "dimmer switch" up or down on a light fixture with no bulb in it. So the fact that these agents didn't help you hardly disproves the theory that the norepinephrine transporter gene has been switched off. Of course, there's nothing that says that you can't have other neurological problems besides POTS. If you have denervation, you have denervation. Have you had a tilt-table test? If you had a negative result on the tilt-table, you wouldn't have been eligible for inclusion in the study. So maybe you have a completely different disease to begin with. Fortunately, there would be no point in doing an MIBG in your case. If you want to measure how bad someone's NE reuptake is, you just take a blood sample when they've been lying down for a while and another after they've been standing. They routinely do that for POTS patients in some centers. We haven't read the actual study yet, but it wouldn't bother me to see the researchers say that "all" of their case subjects had hypermethylation of the NET promoter region or that "none" of them had denervation in the legs. If that's what they found, then that's what they found. I am particularly encouraged by the possibility that they included anyone with a positive tilt-table test. If you find a bizarre finding in a motley collection of people who have really only one thing in common, I think that's compelling. If every single one of these people didn't have denervation, I think that's also compelling, because it contradicts a common theory. Nevertheless, I agree that it is important to consider the inclusion and exclusion criteria of a study carefully, because they can be used to bring about misleading results. For example, some people in the CFS community argued that the studies that purported to show that "cognitive therapy" and "graded exercise" were beneficial for CFS patients didn't use a proper case definition for CFS. The studies allegedly used the Oxford criteria instead of the CDC case definition, and therefore included a lot of people who wouldn't have fit the more stringent CDC case definition. So, people who didn't really have CFS but benefited from graded exercise and cognitive therapy would muddy the findings. Some people have argued that this was a deliberate ploy on the part of British psychologists to get CFS defined as a psychological disorder rather than a medical illness, thus increasing trade for the psychologists. You can read more about the controversy at http://www.masmith.inspired.net.au/docs/pacing.htm.

Eventually, nearly everyone gets an Epstein-Barr virus infection (which causes "mononucleosis" or "glandular fever" but might occur without causing any symptoms), yet only a tiny minority get POTS. Many are called, but few are chosen, I guess. Or maybe the EBV has nothing to do with POTS. No one knows. I was very sick for about 18 months after I had mono, but I recovered and then was healthy for about 10 years. Mono is notorious for causing prolonged fatigue, but not all fatigue is POTS.

If you want the lowest dose of hormone for birth control, you should consider the vaginal ring. Ask the doctor (and also the pharmacist, who is more likely to know) whether the progestin component of whatever you are taking has a diuretic effect. Drospirenone, for example, is chemically related to spironolactone, which is a diuretic. You definitely wouldn't want that! Personally, I'd consider discontinuing the salt loading only if I was having hypertension.

Hi d4g7 In your signature line, it said that you have Wolfe-Parkinson-White syndrome. From what I understand, that is an electrical conduction problem in the heart. Both WPW and POTS are associated with rapid heartbeat, but the cause is totally different. The treatment is different, too. I think that they can cure most cases of WPW with radiofrequency ablation. However, ablation can be a disaster for people with POTS, as some of the people who post on this forum can attest. The other important thing to consider is that WPW can be lethal, whereas ordinary POTS is "merely" disabling, as far as I can tell. Do you have a cardiologist you trust? Maybe your circulatory problems are curable.

Hi Ernie: I can't believe that the doctors think your case is too "complicated" to diagnose. Yes, you have complications, but the condition itself shouldn't be that hard to figure out. You have mentioned in earlier posts that it is an autosomal dominant inherited trait in your family. That suggests an inborn error of metabolism. I think that the problem in your case is that the doctors are regarding each of you as an isolated individual, not as a member of a kindred, half of whom all have the same bizarre problem. When you have a disease that is so clearly hereditary, a diagnosis for one can be a diagnosis for all of the affected people in the whole family. I used to work for a veterinary journal, and I can tell you that veterinarians think that way. However, human doctors rarely get to treat a whole population of related individuals. So maybe they just don't get much practice in figuring out rare genetic problems. My best guess is that you have the French Canadian form of autosomal dominant hyperinsulinemic hypoglycemia (http://jcem.endojournals.org/cgi/content/abstract/82/4/1192). I really really really hope that this is what's wrong with you, because it responds well to treatment with diazoxide. However, your doctors are unlikely to figure it out on their own at this point, because you probably have some degree of insulin resistance by now, which clouds the picture. The question to ask, I think, is whether you (or any of your affected relatives) have a missense mutation (Arg1174Gln) in the tyrosine kinase domain of the insulin receptor gene. It would probably be cheaper, and almost as reliable, to simply find out if you are a blood relative of the other people in the JCEM study. Can you postpone the potentially heart-stopping test until after they figure out whether you have the insulin receptor gene mutation? If you have the mutation, there would probably be no point in doing the dangerous test. Best of luck!

I wouldn't be surprised to find that PTSD is a form of dysautonomia, although I don't think anyone has enough information to classify it as such at present. One of the drugs used to treat nightmares in people with PTSD is an antihypertensive that causes bad orthostatic hypotension.

Sorry to hear that are feeling so bad. As for the smoking, you may have more luck with giving up the smoke part first, then tapering off the nicotine. Ask your doctor about using a nicotine patch or gum. Nicotine is bad for you, but nicotine plus all of the crud that is in the smoke (including carbon monoxide!) is far worse. Maybe you will feel a little better if your lungs heal a bit. I think that POTS makes it harder to give up smoking, because the nicotine constricts the blood vessels. Perhaps the doctor could increase your midodrine dosage as you decrease your nicotine dosage.

Sorry to hear that you are feeling so bad. You are probably right. It probably is the depression. I wish I could suggest something that would make you feel better. I hope you feel better soon.

One possible but rare cause of blood pooling in the lower extremities is thiamine deficiency: either you aren't eating enough thiamine (vitamin B1), or you aren't absorbing it and transporting it properly within the body. You can ask your doctor to test your thiamine levels or just give you a B1 shot and see if you don't feel better. If you have a thiamine deficiency, a big dose of B1 will probably make you feel better within 24 hours. There are lipid-soluble forms of thiamine for people with thiamine transport problems (e.g., diabetics and alcoholics). See www.thiasure.com Large doses of thiamine are also used to treat mitochondrial problems. Thiamine seems to be the most helpful intervention I've tried, so maybe my problem is mitochondrial. Or maybe I drink so much saltwater that I keep flushing the water-soluble vitamins out of my system. Hard to say.

I am one of four children, and the four of us had had exactly one filling among us, until we moved to a town that didn't fluoridate its water. (Fluoridation was a nefarious tactic of the Worldwide Communist Conspiracy, to sap and impurify our precious national fluids. If you don't believe me, watch the movie Dr. Strangelove, or How I Learned to Stop Worrying and Love the Bomb). Anyway, we went to the dentist after having lived in the nonfluoridated milieu for about a year, and I had four cavities. The rest of us all had about the same number. So now I and my siblings each have a mouthful of mercury amalgam fillings, thanks to Cold War hysteria. I think I would have been better off if we had continued with the fluoridated water. A few years ago, a retired professor of dentistry told me that the "antifluoridation" movement was largely the result of a public relations campaign from some manufacturing interests who didn't want fluoride to be added to water supplies because they would have to remove it at their factories to keep it from reacting with chemicals that they were using. That made a great deal of sense to me, because it would explain where the antifluoride campaigners got their financial support and how they got access to the media, which of course are privately owned. Unfortunately, he couldn't remember who in particular was funding the program. If anyone knows, I'd be interested to hear about it. So now the advocates of "alternative" dentistry are trying to persuade me that I need to have all of those fillings taken out. Why? Well, mercury is theoretically toxic. Well, so is fluoride. But it is the dose that makes the poison. I haven't seen any evidence that people get mercury poisoning from amalgam fillings. If it were a serious problem, wouldn't it be the dentists and dental assistants who have the greatest risk of exposure? The antiamalgam people seem to have as little evidence on their side as the antifluoride people did. But the "alternative" dentists could make a bundle by doing all sorts of unnecessary procedures. On the other hand, if you broke a mercury thermometer in your bedroom and the mercury slid into the cracks in the flooring, that could pose a serious risk of mercury poisoning. The mercury would slowly evaporate, and you'd be exposed to mercury vapor. That person definitely should be tested for mercury poisoning. One warning about the tests involving a "provoking agent." These agents cause your body to excrete mercury faster than usual, so you will have a high level in the urine. But that doesn't mean that your body burden was unusually high to begin with. Here's a link to some critiques of chelation therapy: http://www.quackwatch.org/01QuackeryRelate...ationindex.html

If you work while you are sick, instead of taking disability, you will merely displace a healthy person from a job, because your working will not increase the number of available jobs. Society will not be better off with you working, unless we are at full employment, which we aren't. Society will be worse off if you insist on destroying your health by working when you aren't well enough to do so. That's why we have disability insurance to begin with. So take disability if you are entitled to it, and don't take any crap from anyone about it.

Yeah, I get orthostatic diastolic hypertension. That just means that the bottom number of your blood pressure goes up when you stand up. When I'm feeling really crappy, the bottom number goes from 60 to 90 (i.e., from good to really bad). The orthostatic diastolic hypertension can go along with narrowing of the pulse pressure (i.e., the difference between the top and bottom number goes down). My nephrologist said that when it goes below 11 or so, you are not really getting circulation in your brain. He called it "decapitation." What amazed me was that I could understand and remember what he said when I was in that condition. I think that my brain switches to anaerobic metabolism for a while.