erik

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)

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.

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 acid-base balance in a way that happens to affect blood volume, but I don't recall the specifics. The right circumstance could perhaps account for "shortness of breath" (an impetus to clear more CO2... aka, counter acidity), tendency to low blood volume (if the long term acid-base work of kidney happens to contradict blood volume sustaining activity). Also, note that acidity apparently alters potassium concentrations. As pH falls (more acidic), serum potassium will tend to go up. But for most folks, there isn't a persistent acid-base imbalance... instead a compensation is made (which means the problem could "pop out" elsewhere). Lactic acidosis is said to occur from hypoxia/hypoperfusion (shortage of blood/oxygen) to tissues. Hypoperfusion seems endemic to POTS, for one. Who knows, maybe this sets up a low-grade tendency toward lactic acidosis... and the compensations (usually successful) push the symptoms into shortness-of-breath and low-blood-volume for some.

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" for purposes of reducing essential hypertension. Even when they do succeed (which is very difficult), the kidney tends to just tune-up it's sensitivity and adjust to the new low-salt levels, defeating the whole exercise. The same may happen in the opposite direction too with salt supplementation, who knows. The entire picture of interwoven hormonal signals is a bit much to pin down 100%, even without dysfunction. When on fludrocortisone, I got used to taking potassium by necessity as it could go low on me. If any of the specific neuro-hormonal responses are lacking then the picture changes. Can't assume response will be either normal or abnormal... with POTS & the like, sometimes it seems like the "entire system" is off-kilter yet each of the pieces still tests pretty normal for most folks. If someone has an explicit malfunction like in the adrenals then it would need to be considered, of course... and one treatment or another could be very inappropriate. That's where a doc at least tries to guide things when possible.

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.

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.

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 working renin response to K and focuses on just one of the influences on renin stimulation (albeit a key one). I've had low potassium (from fludrocortisone & running out of K supplements) and the ER was surprised I didn't induce serious heart trouble (I was lucky). One needs to be wary of either high or low (especially if already prone to arrhythmia)... it is really critical to heart function. Sodium variations seem less critical in short term stuff, and I think the body treats it as such.

Dr. Bombay is cool, though I think Miss Often might better solve some of my personal problems... or at least distract me from them.

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 decision!

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.

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 entry for Dysautonomia

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 like a "surrogate marker" can be take as supportive evidence.

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 better would be if the FDA magically "looked the other way" and ignored these regulations designed to protect us all. (It would be cool if Shire had some helpful info that they could sell to one of the generic makers to jump start their trial). The "expanded access" or "compassionate use" status sounds very burdensome... and insurance coverage would be lacking... and who knows how liability insurance looks on such actions by a doctor!?! Sounds like "orphan status" doesn't change the requirement for the same approval process, it just opens up tax benefits and/or outside funding for the study (provided fewer than 200K folks in the US have the condition... which is not the case for "OI" in general, but it is reportedly the case that only 100K patients are prescribed midodrine specifically).

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. Both are over-the-counter, though typically you have to sign for pseudoeffedrine due to illicit-drug precursor prevention efforts. Welbutrin (buproprion) might offer potential BP increase and fall short of full on stimulants (still lending itself to insomnia for some folks though). ProVigil might do this indirectly a little too but not sure how much it's known for that. The SSNRI's sometimes boost BP I think. All these less direct options get tricky and are probably quite "trial & error" like everything else.

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?)

For one, POTS often bites back really hard when you try to push through it! It is not the only condition that does this, I'm sure... and I'm not familiar with your friend's disease... but this is one of many considerations. One risks inviting a "downward spiral" if not cautious with things... and "pacing oneself" is often advised. If she can proceed unencumbered then more power to her, and she also deserves credit for the effort in doing so, no doubt. The unfortunate challenge with POTS is that there just isn't a direct "action" that can be taken to express one's "effort" or triumph! Sometimes it actually takes "effort of restraint"... which like most POTS things is quite invisible and unappreciated! One might presume that she is making a well-intentioned effort to be inspiring (not only to you, but to herself as well). I think we all have to insulate ourselves at times... and the way we draw these lines often involves a bit of coldness or cruelty or just "unrealistic posturing" (even amongst friends/family where we'd like to pretend we enjoy full intimacy). Like you say, she may not be as invincible in spirit & ability as she lets on. Who knows... perhaps her presenting herself in this manner could be helpful for her (especially if her eventual prognosis is dire). It may be something that won't (or shouldn't) be tampered with. If this were the case, it might just be a topic to minimize rather than either of you pressing until the other "gets it" completely. These things might also need to be "absorbed over time" rather than understood quickly. I know I have often down-played my situation in order to insulate other folks from it... either as a simplification, a courtesy, or to avoid driving them away. She could be doing a bit of that. Basically an odd "refusal to understand" can be communication that she "doesn't want to go there" in general. I tend to dislike "psychobabble" and unfounded speculation, but I seem to have produced quite pile of it here for you to either consider or discard as you see fit! Hope there's something helpful in there somewhere!

Ditto, Tuesday! Same body response, pretty much unpredictable (and it is lousy to be so unreliable). If I go very "deconditioned" then overall things get worse and this lasts a long time, so I do what I can and take the hit in order to prevent a total slide. At the same time, exercise can (sometimes) bring on aggravated symptoms but these are usually relatively short term. So my best guess conclusion is that keeping up something is better overall even though it never goes smoothly.

I don't know anything about the the blood measures involved here. However, those like Vemee who allude to chronic hypoxia (especially cerebral) being related sure seem to highlight a plausible connection. If these altered measurements coincide with "altitude" style reactions it seems to makes sense given a shoddy circulation associated with POTS, the apparent "cerebral autoregulation" problems, and NMH or NCS style tendencies to cut-off blood supply at inconvenient times. In that sense, the potential link seems like a "no-brainer"... as in "no blood supply to brain"!

Yeah, it often is hot! Especially compared to most places. Just depends on where you go... gain a little altitude and things cool down very quickly (and/or get wet) depending on time of day. Mostly it just changes constantly!

Yeah. Since the most intense experiences are so brief (for me) I got rather suspicious of some sort of Simple Partial Seizure (as from TLE... temporal lobe epilepsy or similar). The "simple partial" variant is basically invisible and experienced on the inside, sometimes hitting the "limbic system" which means it can be a "wave of intense emotion" usually of a negative nature, but can also be others. It happens to be similar to "aura" too... either aura around seizure or around migraine. The challenge is that these things don't even always show up on EEG, so I haven't been aggressive in seeking diagnostics. If I did one I'd go with a "provocative" style test because I personally managed to trigger one of these on demand (by setting up a couple conditions that increase a person's seizure vulnerability). The other thing it is loosely similar to is "mood lability" which is associated with various psychological conditions as well as dysautonomia (the latter makes good sense to me because the body/mind's basic underlying regulation are prone to going out of "spec"). As far as what to do about this, I don't know. For meds, the modern anti-epileptic meds (just coincidentally) happen to also find use as anti-migraine and mood-stabilizers... so the multiple experiential similarities seem to converge in the neurology somewhat. I haven't heard much about these things (carbamazapine, valproic acid, etc.) being used directly for autonomic dysfunction though... except indirectly when folks have bad migraines to try to prevent (which is statistically associated with dysautonomia). I guess Klonopin (which isn't same as those others, but is anti-seizure) is the closest that seems directly prescribed for dysautonomia... though I think typically in a much lower dose than epilepsy or mood disorders.

Well, I have a somewhat similar overall experience but it stops short of euphoria for me. Like you, these are very brief windows where the body/mind feel "almost normal"! It is like there are 20 revolving spheres, each with a small window in them, and every so often they all align like an Indiana Jones contraption (which of course then self destructs like in the movies . Unfortunately, I also get intense waves of horrible feeling... "moments of horror/doom" which are perhaps anxiety style symptoms (which POTS can cross over with physiologically & psychologically). These negative experiences are more rare now that I manage my POTS (hydration, salt, fludro, etc.). The positive experiences have remained rare though. Relative to how lousy one can feel for such extended periods of time the brief breaks are almost like a euphoria, but for me, it is more like a short "relaxed" or peaceful state. I now figure it is a little view of what most other folks experience as a decent part of their "norm". Of course average folks have their troubles and don't feel great all the time either... but I figure they way more balanced on average.

Fatigue is one of my key troubles, both physical & mental. In general it seems to follow it's own pattern except for obvious things like letting myself get dehydrated. I'm also pretty sensitive to heat. Sometimes I push through it and come out fine (or better) but sometimes it seems to bite me (which many people report... exercise intolerance basically). I don't know how to defeat it. Sometimes a decent bit of rest can turn things around for me. Extended rest seems to cost me though, so I typically push some activity even when not feeling well.

TBI (traumatic brain injury) tends to imply something of a more severe and directly noticed nature, but MTBI (Mild) or concussion can apparently still cause lasting effects. There is this article here relating TBI & POTS: http://www.dynakids.org/Documents/POTSfollowingTBI.pdf Post-Concussive Syndrome points to some potential symptoms that can persist for quite a while. It seems reasonable that one can mistake the more subtle damage of concussion as being totally healed in short order (after obvious symptoms subside). I know in my case, my first overt faint (full syncope) followed a head injury by several months so it is a logical thing to pin my orthostatic symptoms on, timing wise. There also seems potential for subtle damage to pituitary or hypothalamic areas. The hypothalamus is a key autonomic sensor, giving feedback on things such as temperature, acid/base state, CO2 levels, hormones, etc. and (to my basic level of understanding) works with the brain-stem to coordinate autonomic responses which then go out in complex CNS, vagus nerve, and pituitary (hormonal) signaling. Even a subtle misdirection there seems like it could throw things out of balance, either consistently or just intermittently. I don't know if "simple concussion" is often thought of as having this potential... but it seems possible to me.

I tried NuVigil (armodafinil) which is the slower metabolized half of the ProVigil blend (so it tapers off slower). I think to push the dose high enough for effect for our purposes, it might make more sense to stick with ProVigil so that it wears off quicker after peak. However, I've never tried ProVigil personally. I didn't notice a lot of "physical" fatigue relief from NuVigil (which is intermittent for me anyway), but did note some mild help with mental concentration. I think I'd have needed a higher dose to know more. There is also this article (in summary here) to support ProVigil's potential to help a decent number of folks: http://journals.lww.com/americantherapeuti...ment.99769.aspx

Apnea was one of the first things my doc suspected when I described most of my symptoms. He ordered a sleep study which didn't end up happening, but I bought a Pulse-Oximeter with which to monitor for any crazy fluctuations during my sleep (you can't diagnose apnea without the full instrumentation though). I ended up seeing my very large heart rate increase with that pulse-ox and discovering the wonderful world of POTS! But anyway, the cluster of symptoms can be pretty similar so it's probably something worth checking out. I guess it makes sense since apnea is starving blood/ox supply periodically... like POTS is theorized to do to some extent with flow abnormalities.