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About erik

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  • Birthday 01/01/1970

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  1. I've heard of it used for kidney troubles. Gives a slower released fluid infusion. It would be interesting to know about it for POTS. (I believe there is still risk of infection, just way less than repeated IV or ports)
  2. I'm not familiar with a specific weight-range being associated with dysautonomia, but I have come across two things semi-related: I've seen "rapid weight loss" listed as a potential cause for POTS on some websites (as opposed to post-viral, etc.) Also Dr. Grubb was noticing many patients developing orthostatic intolerance/tachycardia (a.k.a. POTS) following gastric-bypass surgery (mentioned in this article here). Additionally, they were often helped by standard POTS treatments of fludrocortisone or midodrine.
  3. I have read that respiration is the short-term means of maintaining acid-base balance, and kidneys are long-term. Increased respiration eliminates more CO2 and thereby pushes blood more alkaline. Excess CO2 is the main "drive to breath" factor (a person will pass out from low oxygen before feeling much need to breath). IRRC, CO2 / acid-base levels, like temperature & other key autonomic senses, are measured in the hypothalmus. A mis-calibration or mis-response to these signals seems consistent with some of our general tendencies. I also vaguely recall that the kidney happens to do it's
  4. I just take a few over-the-counter potassium every so often, which is very small amount (3% of RDA each... perhaps by regulation?). I have not pursued a more intense or extended release potassium, though I had something once in the ER. I also take salt-tablets (thermotabs) with lots of water. I am seeking modest BP boost via water retention (which comes with kidney reclaiming salt via increased aldosterone) and it works for me. One might note that most receptor populations/tunings appear to adjust as well over time. This is said to happen in the kidney for people trying to do "low salt diet
  5. If you split a pill just be sure whatever variation of the drug you have is "splittable". Often the extended-release are NOT, so be sure what you have and ask doc/pharmacist. Otherwise, need to change prescription to a different dose or a splittable form.
  6. I saw this too. Maybe it was a Mystery Diagnosis episode... or something on Discovery Health??? They said it would be a rare case for the things to be connected, but that they turned out to be in that patient's mysterious case.
  7. Not suggesting to try it (since it is a key electrolyte especially for heart rhythm and must be treated with great caution), but when potassium goes high it is supposed to trigger aldosterone. The aldosterone steers the kidney to dump the potassium... and indirectly to retain salt (with which comes extra water). Aldosterone is like a "rudder" between K and Na/H20... while ADH/Vasopressin is like a "throttle" directly to water retention. To use this theory, one would want both Na & K present so that the salt is there to do it's water retention magic. Of course, this *assumes* a standard
  8. Dr. Bombay is cool, though I think Miss Often might better solve some of my personal problems... or at least distract me from them.
  9. 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
  10. Yeah, it is not tasty! I tolerated it too and it seemed a little helpful, maybe a little calm-focus influence on the mind. I might try another batch some time (I bought a "bulk" supply). I haven't tried the other "racetams", but some others are out there as spinoffs of Piracetam. I haven't had adderall or ritalin so I can't comment on where it falls compared to those.
  11. Well, the exact terms may vary, but on my record is a diagnosis & billing-code of 337.9 (various autonomic codes specified here) and generally if insurance is willing to shell out money, then you can be pretty sure that "something" exists medically! Also, this "fpnotebook" outline is titled "Autonomic Dysfunction Aka: Dysautonomia, Autonomic Neuropathy, Chronic Autonomic Neuropathy". On my record is the abbrev. "AUTONOMIC NERVE DIS NEC" which is included near the bottom of the page in a list of related terms or synonyms of the family of autonomic dysfunctions. Family Practice Notebook
  12. Anybody know details on the nature of the dispute? It appears the drug manufacturer claims they did the necessary studies and the FDA deemed them unconvincing or missing? Would it happen to be something like a dispute over whether "surrogate markers" are sufficient evidence in lieu of "clinical indicators"? In other words, I suspect there is ample evidence of BP elevation after midodrine administration... but perhaps the FDA is insisting on scientific evidence of specific patient symptom improvement. I hope this is not the nature of the dispute, because for O.H. or O.I. it sure seems to me
  13. Hmm. As a long shot, one can hope one/some of the generic manufacturers sponsor the "phase 4" studies and thereby gain/share a 3 year exclusive period. That at least gives some incentive to try a study (or "find" supportive data somewhere). That 3 year exclusion is not available to the original company (who apparently already had their original 5 year exclusive period). It's not a huge market but at least they'd have a lock on it and might stand to profit overall. After that 3-year period, back to having generics (which aren't very cheap anyway) and continued availability. Only thing bet
  14. I haven't taken midodrine (was just getting to the point of asking to try it) but I refer to pseudoeffedrine as my "poor man's midodrine" which I have used in the past in an attempt to do something similar. I am unsure how much CNS interaction it has or how well it would fill in for midodrine. I get a bit palpy on pseudoeffedrine. There is also phenylephrine, a substitute for pseudoeffedrine that is said to do it's thing "indirectly"... presumably by norepinephrine release/activation... whereas I think pseudoeffedrine is credited with being a direct alpha-agonist more akin to midodrine. Bo
  15. Dreaming. I know I'm inconsistent and can't promise or endeavor to do much overall... so as I contemplate some ambition or envision the future, rather than feeling hope or excitement, I feel fear & loss. It is an odd "mourning"... not for something lost, but something that will never be. (This is a "bad attitude" thing on my part, I know, but you did invite "venting", right?)
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