erik

The simple act of "standing in line" is one of my all time worst situations! Now that I know what is going on I try to fidget & work my legs a whole lot to keep blood going, but in the old days this was just a mysterious symptom that was really scary and made me think there was something very very wrong with me. Well, I guess there is... but at least I understand it better now I am an "inward reactor" so I don't tend to snap at folks... but I will feel very weird, think strange things, become very silent, etc. Just as there is ADHD that is impulsive, there can be ADHD-PI (primarily inattentive, lacking the impulsive thing)... and I think there can be similar variation in anxiety & physical anxiety responses. Either way, I get an anti-social response... more of a "hermit crab" than a "crabby crab"... but a "crab" nonetheless!

1. pupils seem normal at all times (though whites are prone to incredible redness when symptomatic) 2. head forward seems normal 3. hand gets purple & veiney

I don't see "FDA approval" mentioned in the wikipedia article, just "approved". I hadn't personally heard of any FDA approval for anything to do with POTS (but haven't done exhaustive search or anything), just heard fludrocortisone is approved for OH & OI, and maybe mestinon for similar recently added (but not sure). You see, POTS does not exist. It is only in my head. You all are only in my head!!! (Sorry, just a little synaptic overflow episode there, I'm back now Stimulants are in various lists of things to try for POTS, OI, OH, NMH, etc. The "pressor" effect should be something akin to midodrine or other alpha-agonist. Sometimes, if you help the basic process of handling orthostatic stress, you can actually mitigate the need for subsequent "body panic" via sympathetic overactivity (despite the drug itself generally contributing to "sympathetic activation"). It might be informative to consider that the vascular beta-receptor complex is special in that it is supposed to inhibit it's own firing when activated in certain ways. That's a fine line of course, and semi-paradoxical. Stimulants are generally DNRI as well as direct agonists of both (which is what makes them extra potent). It is also handy that they are temporary, meaning like midodrine they can be timed with "uprightness" and "activity". Slower and more general "activators" can be problematic in those regards, like potentiating supine hypertension, disrupting sleep, etc. It is mentioned in dinet "what helps" page, Grubb lists it for POTS, it is kind of standard to consider as symptomatic treatment of fatigue, also see here for NCS which can be comorbid with POTS (some estimates are 30%, IIRC). ADHD is reportedly associated with POTS, so cognitive treatment of symptoms can lead to a "two birds with one stone" for some patients that respond well... of if you're in the 30% with NCS maybe that is 3 birds... or an double-eagle as Tiger would say on the golf course??? (a triple sanstendre there Ignoring the FDA question, there is this prior thread... one thing that catches my eye personally is that traditional stimulants are so much cheaper than midodrine and ProVigil... though the later 2 options can be necessary compromises for various reasons. In my personal case, that might be 4 birds! Happy hunting!

Ditto on the weird stomach feeling and I do the identical instinctual tightening response... I constrict my whole middle (up to lower chest) and it "feels like the right thing to do" somehow. I don't know exactly how or where it "pools" but that's what they say it is. I guess some folks pool more in one spot than another... but either way, building the leg muscles on up is supposed to help get that blood back up and circulating (the "muscle pump" effect)... as is doing "squeezes" here and there if you're standing. I lack the rock hard abs so far (maybe one day) but without my beefy calf & thigh muscles I don't think I'd be spending much time upright (I'll faint in 7-15 minutes if I stand still... but last indefinitely if I use the legs). Some rare folks get deterioration in whatever makes the muscle pump itself work (a little valve problem or something) so it isn't a 100% universal solution, but those muscles really can help so it's worth a shot. I have trouble working the abs 'cause my back is finicky, but it sounds like a good thing to do especially for a fellow belly pooler.

I see. Well, definitely teach people about the vascular rehabilitation! I'm still sorting out my situation! I've been called "dehydrated" and questioned about anxiety & depression , then "just O.H.", then more O.I. as the larger "symptom cluster" was acknowledged... and now a tentative POTS since pulse goes double or more upon standing (and doc is going a little "off label" in that genera to help me). Don't know what a full on autonomic evaluation will eventually bring! I'll eventually faint too, if I stand still too long! I know what you mean, Erika. Giving the body a decent bit of time in a relaxed supine state both helps it recover a bit better and also drags things down a bit. It's like there isn't an easy balance but somehow you have to dig out of the quicksand. Sitting still, one keeps sinking, but fighting too hard to climb out backfires too. When in my "bogged mode", I still push myself through it but I get punished like you describe. It feels like both sleep and the "post exertion phase" are just totally broken. I guess that's common with POTS/OI/CFS etc. But when I'm "magically" not bogged and I do everything consistently (hydration + all the tricks), things get very functional and I don't get punished even for pushing hard. My "condition" is still there, but symptoms subside tremendously. If I slip up, I can bring back the OH in an instant though, especially when pushing the exercise... but the steady "Cathielu Vascular Rehab Protocol" sort of thing builds up a safety margin against those setbacks for me. So far, heat-intolerance/weather & diet induced "metabolic feel" are my key indicators of whether I'll go into a my "bog" or if I can be active and think better. I slog through it either way, 'cause extended rest puts me in a deeper hole. A couple day's rest can be good though. I like your analogy about cheating the diet. In that case, a very controlled splurge can be ok (and gently rev the metabolism) but its a fine line and too much backfires easily!

So glad your recovery is going strong. I feel sorry for your "lost years". I wish that had not happened. Fortunately a brighter new life can eclipse that. I was just researching some O.H. details today! My body has gotten better lately and it is corresponding with a longer delay in my OH (and my pulse increase is usually the slow-increase type now, rather than "instantaneous"). There are times when I have immediate OH... and then more resilient times when it is delayed significantly. When it is quick, even moving around doesn't stop the problem. When it is delayed, my "muscle pump" (from moving around, walking, etc.) is enough to stave off most trouble. When things are better, I can exercise and snowball the process (in a positive way), though if I overdo it (or dehydrate) I end up with the quick-OH again. I think your slow steady "vascular rehab" is really smart. You're gonna be a stellar PT expert!

What's "reflex" vs. "adrenergic" tachycardia. Can that be gleaned by something like the manner in which pulse rises upon standing? Like instantaneous vs slow delayed rise? Some other sign? What does "tonic" mean in this context "reduced parasympathetic activity tonic or orthostatic"?

I've not taken it but in regards to topic 1, I've seen brief mention of various medications "uncovering" an existing or borderline MG or "inducing" it. This could be perceived as "mestinon preventing sensitivity to a med" since it treats MG and might counter that other med's effect in that regard. Also, short of MG, generically speaking mestinon might potentially address most any "anticholinergic" side effect? And those are an aspect of so so many drugs. In this sense, if the "sensitivity" to the drug was related to an anticholinergic side effect, it could also satisfy the premise of topic 1.

That's a good point. Norepinephrine is "made from" dopamine. One way to "lose dopamine" is for the body to be way to busy pumping out norepinephrine instead of leaving as much of the dopamine alone to just be dopamine. Since so much norepi is washing away from synapse into the blood the body has motive to do this... and to "work the adrenals" harder on a regular basis making the precursors (unless endogenously supplemented). Dopamine could be underpresent it select places it seems. I wonder if this is an observation in any studies? If it were underpresent in spots that regulate motor control (perhaps influencing ion channel thresholds) it seems like a tremor inducer. If underpresent in endothelium neuroregulation, it would cause leaky veins by failing to inhibit Vascular Permeability Factor. Is this indicated/contradicted in any some studies or facts out there?

Do people often get essential hypertension and POTS simultaneously... as in, enjoy both clinical diagnoses?

Nasty "resonance". Things hit just the right pitch and the wine glass shatters. Ouch! He he. I was thinking the identical thing about methylation Rama... almost word for word! It's seems to be the case that, while the "methylation" thing is apparently also part of the body's normal scheme of things to some extent (perhaps even allowing pathology). It is like "self modifying code"... a programmer analogy for those in that field! In POTS research, "precipitating events" are not solely viral, bacterial, physical. There are cases where psychological circumstances are correlated with onset or sudden exacerbation of POTS. I don't like to leave those folks out of the club as having something to say about POTS as a syndrome. Different ways to interpret such fuzzy concepts. That NET study that found identical physiological marker, coincidentally in both POTS and anxiety disorder sufferers is fascinating to ponder. In one way, that specific study taken in isolation (which one shouldn't do, but is an interesting intellectual exercise) can interpreted as suggesting: "POTS and anxiety disorders could just be two variant 'presentations' of the same underlying disorder" Or "...two somewhat similar pathologies having a common 'presentation adjuster'" The NET commonality is kind of improper to ignore, as with all the other phsyiological similarities. The "varied presentation" stuff is handy... we all project an illness through different "stained glass mosaics" since were all different in so many ways.

Boy, I don't know. Dopamine happens to be key to leaky vein processes though. Just a tidbit. No rule to say that Wellbutrin would do anything specific with that. A surface temptation would be to say "enhance dopamine" --> "reduce vascular permeability"... but as always there's little reliability to "surface" analysis like that. Might be meaningful clue nonetheless. Elsewhere, like in key dopaminergic pathways of the brain, one gets enhanced dopamine effect by manipulating other things (serotonin, GABA, opioids, and such). But maybe in the endothelium this is not so in matters of permeability regulation... maybe things are more simple & direct there. Not sure what to say about renin-angiotensin-et.al. stuff. Like with SSRI's one is tempted to focus on things in top-level regulatory centers of the brain, trunk, hypothalmic stuff, etc. The generic concept of "resetting autonomic processes" can apply to D & N just as it can to SRI use. In the Medula Inna Godda da Vida and whatnot... Iron Butterfly would probably know a thing or two about this I'm tempted to view the "spillover" excess as though it is a misbehaving endocrine gland or secreting tumor. This is the neurohormone turning from the neurotransmitter into the hormone (in levels & timings not normally present)... as opposed to being mostly secreted in proper regulatory cycle from a well controlled gland. I'd call it a neuropseudopheochromocytoma or pseudoneuroparaneoplasticism perhaps! A cute idea... a different angle on what is commonly mentioned, but with different phrasing that helps one draw analogy & help "Work out what that means"! Interesting that POTSies can "look a bit" clinically like some of these more direct endocrine disorders. I do better playing with the "big blocks", the baby LEGO's... since that's where I'm at compared to a researcher, who has the cool big-boy LEGO kits to play with (knowledge & tool wise)! Your description of the weening & night dosing are neat to contemplate, fighting4health. There's always room for counter-intuitive things, like "Low Dose Naltrexone" which is theorized to boost opioids by blocking them (temporarily, since a low dose is cleared quickly). Things that get boosted by a med can then go lower later. A night dose of Wellbutrin might set up a day with less sympathetic activity. Hard to say... just fun to speculate about. Bottom line is clinical effect, especially since one is treating symptoms and not going for cure. That can mean a drug need have nothing directly to do with an underlying pathology, theory, body part, etc. The "weening" pattern that you note happens to match the timing of the "adaptive" phase of reuptake inhibitors in general. Like SSRI's take a couple weeks for the body to "counter the drug" it is likely to be similar with SNRI & DNRI... and apply to escalating and dropping alike. Maybe your night dosing is setting up a "mini ween" during the day... and that's the "benefit period for you" just as your longer "ween" indicates. So maybe you've found a "working cycle" as opposed to a working "steady state". A cycle shift like that would be finicky to dosage... too much or too little might mask such potential benefit easily. I have some "natural cycles" in which I operate best and balanced. Losing weight cycle (steady slight caloric deficit) and warming body cycle (being in moderately cool weather). Both of those make simple sense as far as when the body would "permit activity" and when it would "impede it" and they are my best "fatigue correlating factors" I've found to date. They feel like "my body metabolism shifting itself" and getting functional rather than bogged. Neither of those can be maintained forever. I'd like to be able to trick my hypothalmus (or whatever) into keeping that cycle steady and remove my heat & metabolic intolerance phases. Maybe a med could do that for me.

Welcome! I hope you can get out of or through the medical maze soon. The folks here are great and you'll love the forum.

Cool.

Not that I know of, but this phenobarbitol seems to be working great. Just teasing! I've considered med marijuana as something to try. It could go either way for me and would be interesting to see if it helped my POTS or at least the symptoms. I know people that know people who could write me a scrip legitimately if I so chose. Maybe down the road a bit after running the medical gauntlet further.I've just got a goofy set of traits & circumstances (potentially viewable as comorbid disorders if that were useful, sometimes it is sometimes its not . I match the "90% disconnected" criteria like the thread topic states, and have multiple potential reasons for this. Makes for a complicated "presentation" and blurry lines between everything... so I swim in the murky waters and pursue multiple options simultaneously (almost like multiple persona's, hmm . It happens to be a topic I've delved in to so I've got perceptions & mis-perceptions and some enthusiasm for the topic. Ironically it is at or near top of my list of symptoms I most want to expunge. It's a life stealer. I try to have fun with it to keep it from being otherwise unpleasant! As we all know, when stuff like this goes weird even in minor ways and from any source it's unnerving. Being a goofball is an escape hatch at times when my slap-chop is out of reach. Slap-chop therapy... "slap your troubles away". It is a rockin' tune. Of course, Vince's arrest for battery are a sad reminder that side-effects loom in any treatment regime. I will have to be cautious. I did grow up under power lines and on a steady diet of paint chips, tho. I don't know why everyone asks me that all the time... but I guess I'll just answer that one preemptively for you!

I've had trouble in the past with maintaining subtlety in my double entendres... my lawyer now advises me to aim for double sanstendre instead. Crafting a phrase which is simultaneously meaningless in two ways, while also being slightly risque in neither. It takes years of practice and bland diet. That's why my friends call me "white bread"... pretty sure anyway. If my modeling career doesn't pan out, or if Vince doesn't like my "more ergonomic " invention, I'm gonna fill out an application to become the next "Dennis Miller" except without all his deep esoteric references. I don't read much so I can't understand anything he says but still end up laughing! "Whatchu talkin' 'bout " I like "riffing" off of other things & people with good ideas & skills (Like the Tachinator and many others)... it's a way to learn and enjoy (not "ripping off", "riffing off"... adding a little twister action, like the Vince in Ghostbusters, ehh? ------------------------------ Okay now: If you did NOT do "the robot" like I did when watching that slap-chop remix video (link above), you need to see a physician at once because something is wrong with you... if you DID do "the robot" (plus a little pop-n-lock action like I did), you need to see a psychiatrist because there is something warong with you. If you did not (and do not now) click the I guess you're perfectly healthy.You see, separating the physiological from psychological can be that simple! You didn't even know I was testing you (and actually saying something on topic all along), did you? Sublingual Profiling & Diagnostics is utterly stealthy yet potent... that's why I call it "SPD", ehh?

Though I answered "San Diego", I'm in Hawaii... but alas I'm the heat-intolerant sort at most times. Woe is me, right? One thing, if you just travel a short distance, especially mauka or makai (up-volcano or down-to-sea), you are in a totally new climate so if you need "moderate" it is potentially manageable here. I think allergens are tame... except asthma from the volcano in some spots (SO2 bad). If coldies like the cold... I'm a coldie. If hotties like the hot... Hawaii is a great place for them. Shutes. There are choke hotties out here already, doh' brahdah. No good for da tachycardia issues. I can feel my "sympathy score" going down as I write this on a thread about cold intolerance while dropping a lame pun in faux pigeon amid a forum for a condition with 5+:1 female:male ratio... somebody save me from myself, unplug my keyboard... oh well... all in good fun, right frozen ladies "Cold hands, warm heart" right??? I hope!?!

To avoid easy confusion with EChocardioGram which is quite understandable yet quite different. It would have worked until someone went and goofed up the scheme. Not naming names or anything, here. (UK SPELLING) Again, I'm not naming any names Just kidding of course... it's a German thing (the "K", not the humor of course).

I think some endocrine disorders can emerge as glucose & lipid issues simultaneously, so just be sure to keep a doc appraised if you do find extra glucose signs (I assume they would already know about lipids since they'd do the measure They'd just see if the whole picture seems to fit a "profile" and pursue if they thought it was possible. Not likely, just something to keep in mind. Prettyinpink, it seems like you could be an example of the other end of the loop with activity or sympathetic over-activity ending up in glucose crash (or making a bad back-n-forth cycle). I think an adrenal sort of surge would initially free up glucose, but then potentiate a crash afterward (in a classic picture of the interaction which may or may not apply). Then the crash triggers adrenal surge. In the context of diabedes, especially type-1, I don't know the safe course of action. Gotta ask a medical expert though, cause it's a tricky thing. Only generic safe thing I can think of is also kind of useless... try to steer a middle-of-the-road by avoiding whatever triggers racing heart if that comes first. Lot of help that is! Kind of obvious. Sorry. It's gotta be a tough balance.

Then the "kinins" come and crash the party too! Also, bind to histamine receptors but aren't histamines... and can nag the kidneys in their way while also doing peripheral things reportedly. (But the kinins are my personal fixation... and they're just messengers... can't shoot the messenger Not too long ago when first reading about POTS I read a "treatment list" that as an example of how widely successful treatments can vary, cited "paradoxical effect" of a diuretic as successful POTS treatment. Crazy! I search every now and then in various ways but have not managed to find that web site (and it was otherwise redundant with more thorough POTS description resources, like DI-NET's for example). But it had something to do with a med that is usually a diuretic, acting paradoxically to cause fluid retention at a specific dose or circumstance. One for a nephro-philiac research scientist somewhere to decipher how that somehow works out! It's a great example of POTS med response (and kidney complexity), though.

Oh yeah. Be sure to mention the initial asymetrical presentation as well as if this changed... that's a potential "dermatome" sign... a neuro-thing but one even an ENT would know of.

Man, that's a tough call. I think even if it's underlying thing is neuro, an ENT might be more versed in "reading a clinical presentation" along those lines... just a guess. I have a stereotype of a neuro pulling out some probes and doing conduction tests and such... when this is a case of taking appraisal of the full clinical picture. I may be wrong (or biased) but ear-nose-throat doc seems to deal with that situation more often. Like one service tech that pulls out the "computer" and runs complex diagnostics on your car... while the other takes a quick look and says, "hey your gas cap is off, which set off the check engine light".

Boy it's a pickle. Pluses & minuses to about anything. Kind of a different topic, but both POTS & Raynaud's can be "secondary"... are there signs of any of the common "primaries"? I don't recall if you've scoped them out... things like Sjogrens, lupus, etc. Pardon me if I am forgetting prior information. "Erik, the problem is that there are many 'workable' hypotheses and that one is just as likely as any in certain cases" True. On the other hand, if it were "as likely" that would be way cool! I'd generally expect it to be "easily disproved" or the like I do like the 2 redeeming qualities of a) being really simple (though incomplete of course), and being custom crafted to the thread topic. It would be nifty if thankful bumped into a helpful insight for a particular POTS presentation. With some scouring though, the only drug with similar venous vs artery property to nitrates is a diuretic... theorized to do that magic via prostaglandins. Not much to go on (and to be cautiously separated between "theories" and "practice" of course).

Mee likeee the Guinness... but for the gas (which I happily put up with... spectators may disagree tho). I had an "off brand" Oyster Stout once while visiting Dublin (a.k.a. Mecca), and it put me down for 2 days (just a couple pints). I think it was a POTS crash looking back. Naah, more likely just God punishing me for my blatant act of heresy. I had some Guinness just the other morning to atone. I don't know about caffeine. That's a great & mysterious question. I'm not finding an answer with web searching. I tend to do well on an EnergyDrink-Vodka blend... even if I wake up in another country sans passport or original clothing (that's just part of the deal, right?). Not sure what the FDA concern is there... maybe a HHS / DHS thing? Tannins might be one other ingredient of many to consider. I know Crrrs Light is oft cited as a "clear" option... de facto standard for some desert extreme-sportie circles (I can cite an episode of "Great Ride Open" on FuelTV as sociological scientific evidence) where one must awake next day and retain some wit & function or face peril. It might be worth a go to see if it's POTS light (and if you even consider it "beer").

Pssst... San Diego. Don't tell anyone I told you.