erik

It is good science to explore research issues. It is good science to question all these things. The process is working itself out. The blood donation ban is pre-emptive and since it doesn't amount to a huge donor population (we "donate" enough blood to our doctors/labs anyway it isn't a very harmful premature stance. I wouldn't read too much into it beyond "early early concern" and probably have to have patience to know more. I found that Web Conference series on that CFS site to be handy. They had a prior archive from earlier this year on XMRV and the researcher helped give clarification on much of this (but NOT on a donation ban since that hadn't happened).

Interesting. Hope it doesn't turn out to be sexually transmitted too... there are enough limitations to this thing of ours!

I'm mostly repeating what is already said (and perhaps slightly off mark too), but I have a general comment loosely on the topic: A complaint to a loved one (or one who loves you), can kind of cut either way. It can indirectly feed that feeling of inadequacy on their end. They love you, they would love to help, but they are powerless to do so... hence their frustration at being reminded of this powerlessness repeatedly. It is also painful to watch another person suffer. Sometimes I think watching suffering can be worse than doing the suffering yourself, depending on state of mind and circumstance... like how "anticipation" can be greater than "the thing" itself (for both good and bad things . If they know how much it helps for them just to listen... that can work out I suppose. Seems to me that some folks are more "doers" and less "listeners" (tends to be we men folk) and can get frustrated at not being able to "do" something to help. "Listening" is not "doing", it is a passive act. At worst, one can then end up feeling guilty over this "inappropriate but understandable irritation" which just makes matters worse. On the other hand, I suppose plenty of folks thrive on sympathetic expression and that facet of intimacy. I guess you just have to try it, see how it goes, and maybe pick'n'choose when & how to complain. Be cautious of timing. Complaints that happen to be timed around unrelated "requests" can be easily misinterpreted as manipulation.

Hmmm, yum. Copped liver. Very nutrient rich too. I take niacin sometimes. I've tried various styles. I am an odd one in that I like the "flush" so I prefer the cheap straight niacin. Most that I see are "no flush" which I guess means slow release??? I don't know. I did bump in to a study about no-flush niacin being able to tamp down on blood sugar and/or cholesterol (a.k.a. pre-diabedes use) but it found that some folks had trouble handling the dose that was required (either liver or kidney troubles, I forget which). So I shy away from more than episodic use of that. If I can find that study, I'll post it. I don't recall what dose they were dealing with, but if I recall correctly the issue did not come up with the non-no-flush variety, but folks have to ramp up a tolerance to that slowly to avoid major flush. Anyway, it fits in with "being active" at times for me. I sense either a slight bit of extra energy or impetus. I also have used it post sunburn and got the impression that it might have helped me get the natural flushing process of sunburn over with quicker by adding to it with the niacin... just a mild subjective sense, nothing too meaningful. Some folks hate the flush effect. They say people build tolerance to that so it should diminish with continued use. I don't recall a specific study showing "enhanced energy" or whatever, but it might do a little of that and I think it tends to show up in modest amount in "energy drinks" which tend to be marketed in a manner that "alludes to" research (in a non-definitive way) like most supplements. Interesting to see it in a dysautonomia context. I don't personally notice a huge effect, but who knows... maybe it can be helpful for some.

Maybe a compounding pharmacist can help out. I guess in some cases they take existing meds and "repackage" them as you desire. O as others mention the liquid form allows convenient accurate dose "titration" as they say. Just be cautious with liquids and be 100% sure what concentration you're dealing with and all that. If in doubt ask & re-ask for assistance.

There it is! Your problem is a lack of craziness. Most everyone has some. As the noted philosopher Seal Henry Olusegun Olumide Adeola Samuel said:"We're never gonna survive unless we are a little crazy!" Perhaps not axiomatic words to live by (though the song has some depth to it), but certainly worth contemplation.

Likewise. Sorry things got off on the wrong foot. It is clear you have a lot of passion for your beliefs and a gung ho attitude. I'd encourage you to be sure to take a patient & tactful approach with these things and by all means seek to study & document your findings as best you can. Short of that, you might stick to describing them as more of a personal success story and less of cure all or expertise. It is no coincidence that for many of us, the best and most knowledgeable doctors we have encountered were also the most humble. I wish you the best as well.

"sit down comic" That one really tickled my vagus nerve (right next to the funny bone)! On a sad not, it does remind me of all the girlfriends that dumped me... stating "Sorry things didn't work out... it seem like you're just not a stand-up-guy and that is really what I need right now." So sad: http://www.phrases.org.uk/meanings/331975.html There was one that made me so nervous that I would literally down half a bottle of pepto bismol before seeing her (true story). Maybe my tongue had turned black and I didn't know it... that must be why I didn't make it past the first couple dates!!!

If you've consulted docs in Australia, I believe they probably objected because using alcohol in moderation doesn't fit their preconceived notion of how to use alcohol properly... not their preconceived notion of POTS.

Welcome back RamaKotta! http://images.google.com/images?q=welcome+back+kotter http://razorfamilyfarms.com/cooking/welcome-back-cotta/

Wow. Surprised the Goth's haven't picked up on this one... or maybe they have? Or are they called Emu's now? So hard to keep up with the times

I like the idea but I've never been able to eat "just one small square"!!! Perhaps it will need to be put into a pill form that I don't taste & enjoy, for me to use chocolate medicinally! Otherwise this could be a drug of abuse for many I like the "Guidelines" document. I've just skimmed it so far (and think I have prior???) but I especially appreciate the T-LOC references... mostly because I suspect it was a batch of Funky Cold Medina that probably caused my POTS initially.

Acetylcholine is the key neurotransmitter for the parasympathetic nervous system (except for sweat glands, IIRC) whereas norepinephrine is key neurotransmitter and hormone for the sympathetic nervous system. I like to characterize Mestinon as like an SSRI for acetylcholine... which gives a half-accurate analogy. I'm sure there are numerous implications of boosting acetylcholine, but if nothing else it represents shifting the balance between sympathetic vs. parasympathetic nervous system activity (those two "branches" of the ANS tend to oppose each other in overall effect). Since POTS especially is characterized by too much sympathetic activity... this notion seems to fit. I think I've heard docs mention "parasympathetic withdrawal" as part of their diagnoses too... which makes a parasympathetic boosting drug seem especially handy too. As with any drug, I'm sure there are plenty of more detailed ways to look at it, though. It is different than some comparable drugs in that, assuming I am remembering correctly, it doesn't cross into & have effect in the brain... just outside. This distinguishes it from semi-similar drugs which tend to come up in Alzheimer's and such (acetylcholine is pretty key inside the brain too but that is not said to be adjusted by Mestinon).

I'm not sure how typical it is, but I've had major fatigue, headache and moodiness hit for a couple days while initially starting fludro then it passed. As I push my dose I think it does tend to fatigue me, but at a more modest dose I don't think so (at least not too much). But of course, I never know for sure what to attribute things to... just varying fatigue from POTS or fatigue from the med. I just aim for a middle ground between these things as best I can (between bouts of near-fainting all the time vs. maybe being slowed down by the med). In general docs seem to have some symptoms to jump on right away and some to kind of endure to see if they pass as your body adjusts to the new med amounts. If lucky, things might balance out to a better point in time... so long as symptoms aren't dangerous.

They say that an increase in BP would be characteristic in that case. I'm not sure if it is expected to be of a particular extent or timing or whatever. Might have to discount the first couple minutes of measures because even in normal folks things flux for a bit initially as the body adapts (but that is said to happen mostly with pulse). It does seem that you do not show sign of orthostatic hypotension, though... which some docs exclude as separate from POTS. Your slight up & down in BP reminds me of myself at this point... but in my case I have had drastic OH in the past too and after some pulses of BP increase I will eventually go faint (with a BP crash). I expect my BP stays & rises more often because I'm on fludrocortisone most of the time... though perhaps my body cycles on its own too (or has other triggers). I remember reading about the use of nitro in TTT but don't recall the details. I guess it can be used for provoking syncope if it didn't happen on it's own in prior phase of test. Might be trying to look for a vulnerability to dilation beyond what average folks would have... or maybe checking for specific response that can inform treatment options? I know it is part of some people's TTT protocols, but can't remember specifically what docs tend to use it to indicate. Maybe the BP drop without HR drop is significant??? I'm afraid there is some inherent guinea pig aspect to treatment no matter what, since docs rarely have a specific cause pinned down and people respond so differently to treatments. I've been lucky in that nothing I've taken has done anything much in the way of side effect... but also not all that much in the way of desired effect I guess if you go with suspected H-POTS then by some guidelines one might lean toward dual-alpha-beta-blocker (rather than just beta blocker), clonodine (tamps down on all sympathetic output), etc. I sometimes wonder about how much treatment can be "guided" by diagnostics, even by the expert places that do about all the possible testing one can imagine. Hopefully someone with confirmed H-POTS variety can give better picture of how well you seem to fit that profile.

Just wondering if some product or service is being sold or promoted here???

I'd be cautious of mixing alcohol with most prescription meds, especially if the wonderful feeling was a bit too wonderful if you know what I mean. Can be a sign of destabilizing influence so please be cautious! But beyond that disclaimer, alcohol is said to have multiple effects in the body. It is probably a good "research clue" even if "clinical use" isn't feasible. One that I've read about is it's GABA effect (akin to benzo's) which involve increase in activity of that "inhibitory" neurotransmitter. This would be expected to be a centrally "calming" effect and might explain some benefit. In that regard the up/down (short term) and mixed effects of alcohol probably make medicinal use problematic. In regards to "dependency" issues if used regularly, I suppose one could figure it is roughly on par with benzos and the like. Reportedly, withdrawal is similar in each case. There is also said to be NMDA effect. NMDA & glutamate receptors have been explored (implicated) in a number of things over the years... from schizophrenia to blood flow regulation. Wouldn't be surprised if some of alcohol's effect in this regard is involved in the plus & minus effects for those of us with "blood flow anomalies" like with POTS and such. But hard to say anything specific with this stuff... things are pretty complex and seem like new research. Maybe an expert in the field would know if there is anything to this. I think there are said to be adrenal effects of alcohol too. Not sure the exact nature of this, but one illustrative example is that chronic alcohol use can induce pseudo-cushings... meaning an excess of cortisol release/activity. Again, hard to say anything specific but who knows... maybe since Addison's (the polar opposite of Cushings) can make symptoms basically identical to POTS it might make sense that something that pushes towards Cushings might temporarily counter something in these regards. Just generalized speculations of course.

That is horrible. I had a friend that went through the process for depression and said it was thoroughly difficult & lengthy but to be berated like that is over the top. To tell someone they "belong in an institution" (and further yet, withhold detail/justification about the statement) smacks of a passive-aggressive attack and not like someone doing appropriate public service & evaluation. I don't know the process. Is the outside-consult like getting a doctor to back you up on your claim? If so, it sounds generally worth doing, so long as the expense isn't outrageous. But I wouldn't know if it is wiser to wait for rejection and then do this on appeal? Not sure of a best strategy. The encounter itself sounds depressing enough and I hate how life (and people) tend to pile on stress & attack at the worst moments. At times, it seems like an "animal instinct" in some folks... like smelling weakness and attacking. Not sure if you've seen this in animals, but it is common practice in nature... and very inappropriate in humanity. This evaluator sounds like a dope... perhaps a cruel one at that.

The underlying process said to be involved isn't so different, plus POTS and anxiety can intertwine so it's hard to say how to distinguish a person with "just POTS", just "anxiety disorder", or both. They say stress is a trigger for most folks with POTS, so in a way we automatically have a certain sort of anxiety disorder built in... hyper-adrenergic or not. Without personal insight into your situation, given that a cardio is suspecting hyper-adrenergic style POTS then I would lean that way just because it takes *a lot* to convince a doc to even suspect such things... meaning you've caught his eye with clear symptoms and some signs (hence POTS). Hopefully the upcoming test will give a little more insight. Even "regular POTS" tends to involve extra adrenaline (and friends), just less so than the H-POTS folks. It's also about "nerves firing" and not necessarily "serum blood levels"... though with adrenaline related measurements I guess those tend to correlate. I mostly get things akin to panic style symptoms if upright too long, dehydrated, etc. Nonetheless, they can hit me at other times (middle of the night stuff is bad when it comes)... not to mention being tremulous on a pretty regular basis (not constant, I just mean daily). Despite POTS being defined by troubles with upright position, it's important to remember the problems/symptoms don't stop there. It's also important to minimize any known triggers... and stress is a key trigger! So it isn't a bad option to entertain "both diagnoses" and tackle things from both fronts simultaneously... so long as the shrink doesn't try to supersede the physical findings and claim their world offers complete insight! Docs tend to think within their specialty, understandably. I suspect most advice from counseling will at least help endure, and not aggravate, a POTS based "physical" attack so it is hard to envision harm from counseling. I don't know what all they do though... but certainly deal in whatever way you can with any stressors in your life. That can only help.

Is there a different drug that does the same thing? What does it do physiologically? Perhaps there is a different option that you're not allergic to or doesn't have this side-effect in some folks.

I speak from the insight of failure so I know some pitfalls, plus I have studied & learned from the best:http://www.youtube.com/watch?v=ZsTTvKWPZGw

Sounds handy for the salt loading. I've heard of cats getting subcutaneous hydration for kidney trouble and have been curious if some trick like that could work for us. It gives them a big hump that lasts for a while and only has to be done every so often: http://www.crvetcenter.com/scfluids.htm At times I have my "camelbak" backpack on me often enough that it's about the same

Insurance stuff gets very complicated quickly (even worse than a "tax question" usually does , but sometimes a plan from one state has a mirror plan in another (including affiliated docs, etc.) and your existing plan might remain quite usable even outside of CA. Happens to be what I do and I have a "designated general doc" and all that jazz even though I'm out of state. The flexibility and low cost of my insurance is a key to how I managed to reach a diagnosis and begin treatment so I know what you mean about appreciating what you've got. I will to keep my current insurance indefinitely even if I add another (if I find work, for example)... at least until it is banned by government regs (which is coming down the pike). Unfortunately, it may be difficult to know ahead of time exactly how exercising your current plan will play out when out of state. I just know it works perfectly for me in a similar situation. To have an authoritative answer you'd probably have to ask a lawyer if there is some way they can kick you off your plan simply for being out-of-state... hasn't happened to me.

Thank you for announcing this webinar. Great research oriented topic and plenty of specifically POTS oriented content too (well beyond just the "association" between CFS & POTS, which is substantial enough). Looks like this webinar is up as a "wmv video file" (audio w/video of presentation slides) at the archive link: http://www.cfids.org/webinar/series2010.asp Certainly an informative webinar. A few of the studies, graphs & people involved might be recognized from the set of studies here: http://www.nymc.edu/fhp/centers/syncope/nN...flow%20POTS.htm As were brought up in this prior topic: Exercise Intolerance, the mechanisms - neuronal nitric oxide BTW, the January webinar on XMRV is interesting too.

My key symptoms are a lot like yours. I've been spared GI troubles thankfully, other than some nausea at times but not so often. This has been the case for me for a very long time so I expect it to stay that way for me. I've had stuff get worse over the years apparently timed with specific injuries and the like, but haven't seen an inherent progressive nature to my situation. I can pin some variation on specific aggrivators like heat and, of course, stress of various sorts. Other variation seems pretty random.