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erik

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About erik

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  • Birthday 01/01/1970

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  1. At this point it is just rumor, but I have heard that the FDA is considering yanking approval for blood-letting unless the technique can be put through the final round of studies documenting its clinical benefit. Not sure how it works when a key party of interest is foreign based (Transylvanian), but if they cannot lobby this issue perhaps the Chupacabra can speak up more locally... I'm betting we won't here much in the way of vocal support from leeches. Anyway, the rumor is that a public protest is planned for October 31st... so if you are so inclined, dress appropriately to protest this
  2. Human barometer. Perhaps there is a steady employment opportunity for me yet!!! I guess there are a few circulatory barometric sensors... you can apparently do some weird stuff with "suction" on the carotid (more than just a hickie, that is). There might be pressure sensing of different "cavities" of the body... not sure about that but no reason "stretch" receptors all over can't form an indirect measure here. There are indirect effects of pressure (and so called "partial pressures") on any gas exchange going on, which is probably in a few places. Not sure exactly how/where it is "expose
  3. Reportedly, it results in less neuronal norepinephrine release (by activating one of the negative feedback loops involved in neural "modulation"). So it is presumed to help in a condition characterized by excess sympathetic stimulation, by blunting the release of the primary sympathetic neurotransmitter. It "tones down" sympathetic activity at a rather early/central point in the chain of events... earlier than something like a beta-blocker which tends to be impeding a step later down the line.
  4. For me stuff does not all go away with laying down. I think that either whatever is defective has impact regardless of position (though it obviously shows up most prominently under orthostatic stress) and/or the chronic/cumulative dysregulation also projects into longer term ill effects. Like you and others, the cognitive challenges most often persist for me as well. If I go lightheaded, crouching or laying down can help that... but there are times when I am tired for no reason, and feel tired even laying down... as odd as it sounds, it has even felt tiring to try to rest! Heat is one of t
  5. One thing, since it triggers the kidney to hold salt & dump potassium (just like fludrocortisone does) just keep an eye over time that electrolytes don't drift out of balance. They won't necessarily do this, but they can. Specifically potassium might drift too low. When I went on fludro, my doc had me do a blood test or two over the months to see how I responded. If you go low, I think you just supplement potassium and it should come back into range.
  6. It certainly is a stupid situation, with all the advances in medicine the best that usually can be done to date is informed guesswork and trial & error use of potentially touchy drugs. Certainly worth complaining about, whining or not. Its lousy and hopefully our prospects will improve sooner than later. I've been lucky with meds so far (mostly 'cause I haven't had opportunity to try too many yet but did have some weirdness early on with fludro... and then later when I pushed the dose up a bit. My trouble was mostly headache & moodiness for several days... which I managed to endure
  7. "Does anyone know of publications describing a relationship between..." I don't know any that give a real distinct breakdown amongst those things. Here is a Grubb article that at least mentions EDS under the Secondary POTS section. You will notice it's otherwise quite similar to the background info in that prior Grubb reference: http://knol.google.com/k/blair/postural-ta...0Lsji-N/oPFBfQ# I recall reading that 30% of POTS patients also test positive for NCS. I may be able to confirm & find a reference to this if it is useful. I don't remember if there was much in the way of distilling
  8. I see. If you have low BP overall then fludrocortisone is a likely candidate to help you. I have normal BP typically (unmedicated) and fludro is useful to raise me to low hyptertensive range (140+) or more recently I had bouts of steady 160 and even some 190's. I feel so much better overall with a high BP. This might be the case for you too. I would like to try a beta-blocker myself, but have frequent bradycardia and they tend to slow HR even more, so it's not an easy option (perhaps I could try mini dose). Also, if my BP is high from the fludro (which does help me)... then it is touchy fo
  9. The two articles I've read that go into it a little might clarify (and correct, if necessary) that point. Here's a blurb from a Grubb article in '08 that singles out the sub-type... though of course getting a hold of an expert doc is the way to go: And here's one by Raj that mentions "Central Hyperadrenergic POTS" amongst many other insightful things: These two guys are a couple of the top dogs, especially with research but their teams also do good treatment AFAIK... of course Mayo Minnesooata (don't ya know) is top notch (and didn't they coin the latest term POTS???). I really don't know t
  10. It probably still has a good chance of helping by over-hydrating... especially if you are the Orthostatic Hypotension type (BP falls upon standing). I've even read that fludrocortisone does more than just the salt/water retention trick (mimicking aldosterone)... one article I read mentioned that it helps also by potentiating vasoconstrictive response (although volume increase is certainly it's main deal). At typical dose it's a mild glucocorticoid (but not reaching adrenal suppression levels until .4mg/400mcg). Also, most measurements (other than clever stuff like HgA1c) are just a snapshot s
  11. Yeah. There are a few meanings & connotations to "pandemic". The technical meaning which is arguably of minimal use, the political meaning (how agencies define & respond, etc.), and the "OK, we're all going to die so everybody run around like a Chicken Sans Cranium" meaning. There are few if any promoters of the latter... though perhaps it could come in handy as a pick-up line in a bar... as in convincing someone to make a decision they might not make otherwise! Sadly, it seems that these things operate on a "cusp" or "critical mass" basis. They hum along looking like a total dud
  12. I have read just the opposite... that they do mix this way specifically... though it obviously isn't "sexual reproduction" in the biological sense. They do so in our bodies while we host them... meaning the more people that are infected (even if not deadly so), the greater probability of cross-mutation that could end up with catastrophic effect on others.
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