firewatcher

"Infact i was amazed by two things in TCM - the first being that many of the plants used also have traditional usage history in other countries and secondly that many of them are now being peddled individually by chinese medical researchers as potential pharmeceuticals." Yes and this is a major failing of TCM in response to an effort on its part to legitimize itself to Western Medicine. The practitioner that I see uses an older system, before the Communists came to power and attempted to "Westernize" the old system. The biggest problem with "supplement-izing" these herbs is that it takes their use and actions completely out of context of their intended purpose in the body. Chinese medicine is meant to be a dynamic system to return one to health and then maintain that health, not just to stop the progression of disease. The patient is never intended to take one formula for the rest of their lives in response to a diagnosis, but to move the body into a better state of health and progress towards a weakening of the "medicine" and an increase in health. Another thing you will also find if you research these formulas is that by taking a single herb out and attempting to synthesize the active compounds is not the same as the compounds produced when the formula is cooked together. Many of these herbal ingredients interact with one another in specific ratios that cannot be extracted by any other way than cooking them all together. The invivo actions cannot yet be explained by Western medicine in many cases. For my symptoms, one of the formulas I have taken is a customized version of Zhen Wu Tang, which has many clinical trials to justify its efficacy for many kidney conditions. As it has been the only change that I have made and I have regular lab-work that has gone back for over six years, demonstrating my kidney status, the improvement can only be attributed to the herbs. When I take my "herbal medication," my POTS symptoms improve as well as my kidney markers. As with any treatment, though, the patient's response is often proportionate to the knowledge of the doctor. I was fortunate that mine has an excellent support network and enduring tenacity. A poor practitioner of any branch of medicine will most often yield a poor result, unless they are lucky, and unfortunately there are proportionately as many bad Chinese herbalists as there are bad MDs. As with any drug, these herbs can and do cause side effects if used incorrectly, so what is medicine for one can be poison for another. I do not understand enough of diagnosis using the old Chinese system, so I cannot and will not recommend any formulas for any person.

Sigh, I guess my indignation is overreacting too....

Nope, my first was 9 lbs and my second was 8 lbs 12 oz at two weeks early. No gestational diabetes either...just BIG babies!

Unfortunately, the Western dx of hypovolemia can fall under several patterns of disease in Chinese Medicine: blood deficiency, yang deficiency, fluid deficiency or excess heat, etc. A Western diagnosis will not translate into an Eastern treatment, not even the organs are the same! It might say liver, but it means the "Liver system," or the idea of the liver, not its actual function. When Chinese Medicine talks about the Spleen, it is often the Pancreas/Endocrine functions of the body. This is where Chinese Medicine gets poo-pooed as nonsense by Western Medicine. You can treat the same disease, but it may not be similar from a Western perspective. I happen to fall into a "Kidney Yang deficient" pattern, and with this Western medicine does correlate since I have Chronic Kidney Disease as a Western Diagnosis. My treatments from my "Chinese" doc have improved my kidney function on my labs, which is something that my nephrologist said could not happen. I have learned a lot about Chinese medicine, but I would NEVER attempt to diagnose myself or anyone else; diagnosis is based a great deal on pulses and symptoms which are completely unique to the individual. It is closest you'll ever get to custom pharmecueticals.

I have not tried it either, but I can tell you that Western supplements are very different than Chinese Medicine formulas. The individual herbs would never be used in such high amounts or alone, in Chinese Medicine they would be combined with other herbs to increase and target their action in the body. Unlike Anna, I have had good success with Chinese Medicine, but it is the really old-fashioned, "brew your own tea from herb" type, not the pills or supplements.

I had over a decade of Martial Arts (Karate/Kung Fu) experience with three to five hours a week of training. After that, I had several years of weight-lifting six days a week. Despite all this, I have never been able to run. I trained hard for months, but could not get my heart/system conditioned to bring my HR down. I topped 200 bpm at anything above 3.5 mph. I have been taking Pilates for over three years now and can not push beyond once a week. I have terrible weakness, soreness and inflammation that takes four to five days to recover from.

I don't know if he's still taking anything, or even if he has "completely" recovered, but Greg Page (the Yellow Wiggle) is about to resume touring with the band. He has "recovered."

173/149 typically 100/80

Yup, the cousins are both girls and from the same parent=my Dad's sister. I definitely don't have Marfan's. I'm much stockier, but still hyper-flexible.

I have kidney disease, two of my first cousins have Marfan's Syndrome, but no preeclampsia. I am suspected to have a connective tissue disorder, but have not pursued it.

I have a circadian rhythm disorder that makes it hard to fall asleep at "normal" times, so my deepest sleep is unfortunately at the time when I should be sleeping the deepest.

Circ Arrhythm Electrophysiol. 2012 Jan 13. [Epub ahead of print] Altered Systemic Hemodynamic & Baroreflex Response to Angiotensin II in Postural Tachycardia Syndrome. Mustafa HI, Raj SR, Diedrich A, Black BK, Paranjape SY, Dupont WD, Williams GH, Biaggioni I, Robertson D. Source 1 Vanderbilt University School of Medicine, Nashville, TN; Abstract BACKGROUND: -Postural tachycardia syndrome (POTS) is characterized by excessive orthostatic tachycardia and significant functional disability. We have previously found that POTS patients had increases in plasma angiotensin II (Ang II) twice as high as normal subjects despite normal blood pressures. In this study we assess systemic and renal hemodynamic and functional responses to Ang II infusion in patients with POTS compared with healthy controls. METHODS AND RESULTS: -Following a 3 day sodium controlled diet, we infused Ang II (3 ng/kg/min) for 1 hour in POTS patients (n=15) and healthy controls (n=13) in the supine position. All study subjects were females with normal blood pressure (BP). Ages were similar for POTS and control subjects (30±2 [mean±SEM] vs. 26±1 years; P=0.11). We measured the changes from baseline mean arterial pressure (MAP), renal plasma flow (RPF), plasma renin activity (PRA), aldosterone, urine sodium and baroreflex sensitivity in both groups. In response to Ang II infusion, POTS patients had a blunted increase compared with control subjects in MAP (10±1 mmHg vs. 14±1 mmHg; P=0.01), and diastolic BP (9±1 mmHg vs. 13±1 mmHg; P=0.01), but not systolic BP (13±2 mmHg vs. 15±2 mmHg; P=0.40). Renal plasma flow (RPF) decreased similarly with Ang II infusion in POTS patients and controls (-166±20 vs. -181±17 mL/min/1.73 kg/m2; P=0.58). Post-infusion, the decrease in PRA (-0.9±0.2 vs. - 0.6±0.2 ng/mL/h; P=0.43) and the increase in aldosterone (17±1 vs. 15±2 pg/ml; P=0.34) were similar in POTS and controls. The decrease in urine sodium excretion was similar in both POTS and controls (-49±12 vs. -60±16 mEq/g Cr; P=0.55). The spontaneous baroreflex sensitivity at baseline was significantly lower in POTS compared to healthy controls (10.1±1.2 vs. 16.8±1.5 ms/mmHg, P=0.003) and it was further reduced with Ang II infusion. CONCLUSIONS: -Patients with POTS have blunted vasopressor response to Ang II and impaired baroreflex function. This impaired vasoconstrictive response might be exaggerated with upright posture, and may contribute to the subsequent orthostatic tachycardia that is the hallmark of this disorder. Clinical Trial Registration Information-http://clinicaltrials.gov; NCT00962949. PMID: 22247480

One important thing to consider is your insurance status. Once you get an official diagnosis of dysautonomia, you will be almost completely uninsurable. If you switch insurance, you will have to go without treatment for "pre-existing conditions" for at least six months before insurance would pick up the tab, and since the ANS controls everything, they can exclude just about any treatment they want. As for the government's free option, I am fortunate to not need it yet, so I don't know much about it. Even with a diagnosis, it hasn't changed my doctors' thinking or attitudes, much less treatment. Most just scratch their heads and say "well, it isn't normal for anyone else, but it must be normal for you." On the flip side, there are things that can cause symptoms much like POTS and are "fixable" and might be explored. I'm personally sick of MDs, so I am not pursuing any further diagnostics. I did push and get the official dx, and while it has brought a justification of my symptoms, in my own mind; I can't say that it has helped with my treatment. It simply keeps the doctors prescribing the meds that help.

I've had POTS for as far back as I can remember (I know I had symptoms before age 6.) I am 40 now. I have never been able to do the kinds of activity that "normal" people do. I have always been cardio/exercise intolerant. My symptoms have waxed and waned, with improvements coming during times of general good health and increased activity. Illness or injury (or childbirth) has always preceded my worst POTS episodes. I am finally at an age where permanent damage is becoming apparent; my kidneys have been damaged (the current theory is that postural hypertension has caused the damage.) I think that the physical stress caused by long-term POTS does cause a more rapid "wear and tear" on the body.

There is this one too: Clin Sci (Lond). 2012 Mar 1;122(5):227-38. Increasing orthostatic stress impairs neurocognitive functioning in chronic fatigue syndrome with postural tachycardia syndrome. Ocon AJ, Messer ZR, Medow MS, Stewart JM. Source Department of Physiology, New York Medical College, Valhalla, NY, USA. anthony_ocon@nymc.edu Abstract CFS (chronic fatigue syndrome) is commonly co-morbid with POTS (postural tachycardia syndrome). Individuals with CFS/POTS experience unrelenting fatigue, tachycardia during orthostatic stress and ill-defined neurocognitive impairment, often described as 'mental fog'. We hypothesized that orthostatic stress causes neurocognitive impairment in CFS/POTS related to decreased CBFV (cerebral blood flow velocity). A total of 16 CFS/POTS and 20 control subjects underwent graded tilt table testing (at 0, 15, 30, 45, 60 and 75°) with continuous cardiovascular, cerebrovascular, and respiratory monitoring and neurocognitive testing using an n-back task at each angle. The n-back task tests working memory, concentration, attention and information processing. The n-back task imposes increasing cognitive challenge with escalating (0-, 1-, 2-, 3- and 4-back) difficulty levels. Subject dropout due to orthostatic presyncope at each angle was similar between groups. There were no n-back accuracy or RT (reaction time) differences between groups while supine. CFS/POTS subjects responded less correctly during the n-back task test and had greater nRT (normalized RT) at 45, 60 and 75°. Furthermore, at 75° CFS/POTS subjects responded less correctly and had greater nRT than controls during the 2-, 3- and 4-back tests. Changes in CBFV were not different between the groups and were not associated with n-back task test scores. Thus we conclude that increasing orthostatic stress combined with a cognitive challenge impairs the neurocognitive abilities of working memory, accuracy and information processing in CFS/POTS, but that this is not related to changes in CBFV. Individuals with CFS/POTS should be aware that orthostatic stress may impair their neurocognitive abilities. PMID: 21919887 [PubMed - in process]

"Should I be pursuing the elevated Creatinine?" Emma- Most definitely! I have stage 3 Chronic Kidney Disease based on a high SCr and other kidney function tests. My nephrologist thinks that the changing blood pressure has caused damage to my kidneys. There are also kidney issues that are treatable that can cause blood pressure issues! PM me with any questions.

"Do people from Asian origins get this? Maybe they are treating people differently?" I am in the Southern US and happened to find a really good acupuncturist/Oriental medicine doctor. It isn't just an Asian thing. As with all our doctors, it takes looking and interviewing. There are a lot of poorly trained TCM practitioners out there too, and they can do as much damage as any MD. I got really lucky and still ended up doing a lot of my own research for him. It has also taken me well over a year to see the gradual improvement that I have. Though my POTS is better, I have a whole bunch of other stuff that is screwed up endocrine-wise. My MDs were stumped, so I moved away from "traditional medicine" and to TCM.

In my case, part of my "Chinese" diagnosis is blood deficiency. I have not taken this formula though, since the underlying presentation was at a deeper level. I have been taking herbs that support the kidney which in turn supports the "sea of marrow" and the generation of blood. I think that this formula would be a "bandaid" or quick fix instead of addressing the real issue for many of us. These herbs aren't considered dangerous, but they are synergistic and effective only with the proper preparation like most of these formulas.

When I get bad, I can lose 3.5 kilos in an afternoon. I have to weigh myself daily to monitor my fluid status. DDAVP is the only thing that I've found that stops this, and then only while it is working ( about 7 hours.) I'm sorry that you are doing so poorly. Can you think of any trigger? As crazy as it sounds, you might try liquid diphenhydramine (Benadryl.) When I was at my worst in '07, that helped take the shakes down to a manageable level and took the anxiety/edginess down. I took a full dose, every 4 hours. I knew when it was wearing off by the return of the tremors. That constant dose would sedate most people, but it really helped me, it might help you get through your work day. Good luck!

Sue, I don't think that body shape will give any idea of estrogen status. Maybe age at menarche or menstrual pattern. Progesterone makes me NUTS! My OB/GYN tried me on it and it was nasty, so I stayed with estrogen only. Unfortunately, I'm off that now and having a hard time regulating my fluid status. If you were to start a poll, maybe actual hormone testing and the info above. I know my migraines started two weeks before my first period, so it was definitely a hormone thing. My headaches were also much better when I was on the estrogen. Men make progesterone too, but not to the same levels that women do.

I believe that biofeedback can help, but there have been past conversations on the forum about it and meditation. Several members meditate regularly and still cannot control their POTS symptoms. There has even been a study (with unreleased findings) into hypnosis and the ANS (link below.) I think with an intact/functioning ANS, better/trained responses are possible, but to call it a cure reinforces the idea that this is all just "in our heads," and that we could control it if we wanted to badly enough. http://clinicaltrials.gov/ct2/show/NCT00061009 "Detailed Description: This protocol describes a study to investigate the relationship between susceptibility to hypnosis and regulation of the autonomic nervous system. Several studies have demonstrated that individuals with particular conditions such as chronic fatigue syndrome (CFS), posttraumatic stress disorder (PTSD), chronic pain, and generalized anxiety disorder (GAD), have altered hypnotic susceptibility. Patients with chronic orthostatic intolerance (COI), a general category of autonomic dysfunction that includes neurocardiogenic syncope (NCS) and postural tachycardia syndrome (POTS), often present with symptoms that are similar to those seen in CFS, PTSD, chronic pain, or GAD. These observations led to the hypothesis tested in this protocol that patients with COI may also have altered hypnotic susceptibility. We also hypothesize that increased hypnotic susceptibility will correlate with increased ability to modulate autonomic function appropriately in response to suggestions during hypnosis."

But then there is this article about progesterone and aldosterone and sodium which states that progesterone + high sodium increases aldosterone: http://jcem.endojournals.org/content/91/10/3981.long

I just received my recent labs and have noticed a trend in elevated progesterone levels. After a little digging, I found this: "Progesterone exerts its primary action through the intracellular progesterone receptor although a distinct, membrane bound progesterone receptor has also been postulated.[23][24] In addition, progesterone is a highly potent antagonist of the mineralocorticoid receptor (MR, the receptor for aldosterone and other mineralocorticosteroids). It prevents MR activation by binding to this receptor with an affinity exceeding even those of aldosterone and other corticosteroids such as cortisol and corticosterone.[25] Progesterone has a number of physiological effects that are amplified in the presence of estrogen. Estrogen through estrogen receptors upregulates the expression of progesterone receptors.[26] Also, elevated levels of progesterone potently reduce the sodium-retaining activity of aldosterone, resulting in natriuresis and a reduction in extracellular fluid volume. Progesterone withdrawal, on the other hand, is associated with a temporary increase in sodium retention (reduced natriuresis, with an increase in extracellular fluid volume) due to the compensatory increase in aldosterone production, which combats the blockade of the mineralocorticoid receptor by the previously elevated level of progesterone.[27]" Perhaps this is why women of childbearing age are more effected by POTS than others? Could it be a hormonal glitch? And this article using men: Chronic potassium depletion increases adrenal progesterone production that is necessary for efficient renal retention of potassium Boutaïna Elabida, Aurélie Edwards, Amel Salhi, Anie Azroyan, Heidi Fodstad, Pierre Meneton, Alain Doucet, May Bloch-Faure and Gilles Crambert Abstract: Modern dietary habits are characterized by high-sodium and low-potassium intakes, each of which was correlated with a higher risk for hypertension. In this study, we examined whether long-term variations in the intake of sodium and potassium induce lasting changes in the plasma concentration of circulating steroids by developing a mathematical model of steroidogenesis in mice. One finding of this model was that mice increase their plasma progesterone levels specifically in response to potassium depletion. This prediction was confirmed by measurements in both male mice and men. Further investigation showed that progesterone regulates renal potassium handling both in males and females under potassium restriction, independent of its role in reproduction. The increase in progesterone production by male mice was time dependent and correlated with decreased urinary potassium content. The progesterone-dependent ability to efficiently retain potassium was because of an RU486 (a progesterone receptor antagonist)-sensitive stimulation of the colonic hydrogen, potassium–ATPase (known as the non-gastric or hydrogen, potassium–ATPase type 2) in the kidney. Thus, in males, a specific progesterone concentration profile induced by chronic potassium restriction regulates potassium balance. Of all the hormone testing that I have had, progesterone and cortisol always come back high. So is the salt elevating my progesterone level or is the elevated progesterone causing me to shed the salt? Has anyone else had hormone testing done and noticed a trend?

I checked into some area hotel meeting rooms, but don't think that is an affordable or comfortable option. I know that I could get my church's recreation center, but I am not central in Atlanta (South/Newnan.) If any of us have a better location, it might be a better (quieter) option to use a church's facility. We could turn it into a "POTS-luck party" with each of us bringing a little something.

Ken, As long as I can go, I'd be happy to drive you! There is another member in PTC, so we may all carpool.