erik

I'm a bit of a PIAN FLEMING sort meself... international man of mystery and frequent bathroom visits. Race-day hydration is a challenge, you know I'm from the tortoise bradycardus species racing amid a pack of hotfoot fluffytails that test positive for steroids (fludrocortisone, at least)! Supine HR: 40's & 50's most often (60's if lucky and after some good coffee) Standing HR: 110-130 Intermittent othostatic hypotension I'm not a nose runner... one has to "pick" one's specialty and that isn't mine... I'm pretty good at "glucose diving" though. You might have your coaches check your abilities in that sport yourself, if you show an aptitude.

Some things are expelled via sweat glands beyond water & electrolytes. Does your body go through phases of odd odors (or excess goo ? Have you happened upon any pattern to it, perhaps also timed with any POTS symptoms? Just fishing for a coincidence here... especially since many of our kidneys are often preoccupied with dumping water/salt... so our bodies might tend to expel things via sweat glands more than average folk. There are plenty of potential causes, such as certain foods/ingredients, high protein (making the body expel excess nitrogen in sweat to augment dumping via kidneys), bacteria on the skin, detergents/soaps, high salt intake, etc. Sometimes an illness is known for trademark odors (diabetes can smell "sweet", etc.). Phases of being too tired to shower for a while would contribute, but something underlying could be at play too. Who knows. I often have a scent that is akin to "artificial butter popcorn"! It comes and goes. I could well be basting myself in it in my sleep, and it might even be a useful cologne... but it's odd and doesn't vary simply from increasing or abstaining from the stuff. I am not related to Orville Redenbacher either, as far as I know... I'm assuming it to be unrelated to POTS symptoms, but has anybody had anything similar that might have even timed itself with some of their POTS stuff? I'm open to any and all vague or specific, supporting or contradicting comments!

Just had some NUUN last couple days. I'm likin' it. Subtle taste. (I even tried the Orange Ginger with milk & whey protein which was good). I'm getting a nice "constant salivation feeling" that I get after a couple intravenous salines (maybe the glands are happy with overall balance and being more loose with secretions).

I get windows where I can exercise, but I end up with a headache for a day or two after. In the past, I've ended up fully zonked... or nicely envigorated! Other than that vague pattern, I've not a lot to add other than "I feel your pain".

Perhaps I shall buy you a beer in the "great hall" one day -- Eir?ksm

I have... sort of. Now that I know what to look for there are little symptoms most of the time... but ignoring them works for me sometimes (and bites back hard at others). I describe my POTS symptoms as "variable & episodic" and "mild/mid disability" group in terms of daily functionality... but with a significant impact on overall life (I'm unreliable you could say . I have yet to measure a "normal" pulse change upon standing since that first time I or a doc has made that specific measure, however.

In a nutshell, yes! Strange feelings -- quite frequently but "episodically". Now that I know about this POTS thing going on in me it does seem that they correlate really well... even explaining things well into the past (though perhaps a mingling of POTS related triggers with a simple-partial seizure sort of thing). Hard to say... there are even some memory gaps so the strange feelings are sometimes "flickering memories of strange feelings" afterward. Other times there can be an eerie "silence" of feeling or sense of being. These things remain "senses" and "feelings" and don't push themselves into behaviors directly. Outwardly I remain boringly normal. Communicating them is problematic... but matching them, even vaguely, to other "states" and "triggers" can still be helpful (and in my opinion a smart thing to do)! Even a healthy autonomic system is paradoxical at times... nothing is too surprising with a dysregulation. Or remember that a dysregulation can always be an appropriate response with an as yet elusive motive... or a "lose-lose-lose" situation where the ANS is (or believes it is) backed in to a corner by circumstances: http://en.wikipedia.org/wiki/Hypoxic_pulmo...asoconstriction Many of the body's controls remind me of the cheesy radio controlled toys of the old days... the ones that had no throttle, only forward/stop/reverse. You couldn't turn them directly but if you went in reverse, they turned a little to one side. So you can drive the thing to any spot... but it was a most inelegant path!

"You sound a bit depressed," Dr. Wilson said, "do you think your tiredness could be due to repressed fears?" I must confess I do have a repressed fear of misdiagnosis.

I tend not to have overt motion or travel sickness... but have had occasional "minor" bouts of it (perhaps when POTS stuff was worse, hard to say). However, after a boat cruise I developed a persistent swaying-style dizziness and stagger that lasted a month or so... indicative of an extra "vulnerability" in that regard.

Can't argue with that... Kilts Are Cool! I looked in to buying a proper kilt when visiting Scotland (tracking an ancestor from one lineage) but the real deal is expensive. I'll look in to your recommended sources and see if I can summon the stones to wear it in public here in the states. If nothing else, it would be a great "conversation starter". I have a book on "Tartans" too, it is a great tradition. Back in the 80's, we had a trend of wearing "doctors pants"... the really light, loose fitting, things. That trend lasted about a week... but it is another great way to stay cool. I had some that were white, rather than the traditional blue or green or whatever... so they looked almost like regular pants. Perhaps we could try to start that trend up again internationally?

I don't get hyperventilation at all, but I DO have "shortness of breath" and sometimes a hair-line trigger to feeling suffocated if I hold my breath. I used to be able to hold my breath for a while... now periodically, I get immediate powerful drive to breath just a few seconds after holding my breath. This is not the same as hyperventilation but does hint at a similar skewing in things. I hunted though symptoms, disorders, theories a while back to find any sort of "subtle" explanation or connection, particularly between simultaneous kidney and breathing tendencies. Didn't come across any smoking gun with my amateur digging. I looked deeply at "acid-base imbalances", because it is CO2 that drives breathing impulse more than O2... and CO2 is simultaneously pushing hard on the body's acid-base sensing & interactions. The kidney must slowly balance acid-base issues in contention with blood volume needs! Was hoping to find a more subtle issue than the first-line suspects of renin-angiotensin-aldosterone-vasopressin. Breathing does rapid managing via CO2 levels (a key drive to "breathing impulse"). Other things tie in too (maybe even sweating... I get phases of weird smells which I plan to ask about in a different topic

Congrats. It does sound like all the advice is consistent with POTS management plus the breathing issue is interesting. Not sure what to make of it all. Any explanation for the profound disagreement on the EEG analysis? I have read that simple-partial seizure is really tough to spot without intercranial probes... so they go mostly by symptom and are just lucky to sometimes catch something on EEG.

There does seem to be decent evidence that simply a "rapid drop" in sugar levels can precipitate symptoms... even if the absolute numbers stay normal. I've measured this in myself with a glucose meter and a little "provocation"... Coincidentally I fell into a sudden involuntary nap ("food coma"), had a bout of "myoclonus" which I hadn't had in a while, awoke with an intense transient anxiety (I call these my "moments of terror") almost seizure-like, and needless to say a chaser of lasting fatigue... all while staying within "normal" absolute glucose numbers but having a rapid drop from "max post-meal normal" to "min normal". I'm an "experimenter" type... the proper thing to do is keep your sugars steady with "fibrous foods" and "frequent small meals". Oh yeah, our old friend "dehydration" is said to exacerbate hypoglycemic issues too... throw in some low blood flow (especially to the brain), and you have a potent mix so it's no surprise they say POTS people are more likely to suffer hypoglycemic issues than averagers. It's a tough balance because in some ways and for some things you want to minimize spikes and dips... but the body also relies on these spikes and dips to trigger helpful things and "pump" nutrients back in to muscles and stuff... I personally feel stuck between things that make symptoms worse and those that give some better energy & recovery. Some research fronts seem to implicate things like NADH... perhaps that will pan out some day. I don't know if it's valid/safe or overrated to supplement those things.

Frustrating and heartbreaking... it's such an obscure thing until AFTER one knows about it. So good that its now clearer what is going on and can be addressed better. Now that you mention it... measuring heart rate and blood pressure upon standing isn't risky or difficult. I remember getting weird stuff like hearing tests in public school... it seems totally realistic that they could do a basic screening (assuming doing so doesn't open them up to dreaded liability issues). Certainly worth some solid "awareness" efforts.

Lots of fun and insightful anecdotes here. Thank you all. Nice trick! I've spent a lot of time doing that too! On one occasion, I thought I was pulling it off and fooling everyone, when a store employee saw me make my labored transition to upright. She gave me a "knowing" look and told me she gets the same thing all the time. I doubt she knew about POTS either... but she sure spotted me easily!There's another time 10 years ago now, touring an empty building with a new boss. I got so bad that I suddenly sat myself down on the floor, crossed my legs and pretended to be diagramming something... just so I wouldn't black out and so I could think half-way straight and settle my mind! I tend to get deja or jamais vu and eerie anxious feelings (unless I managed to sit down She didn't react badly and nobody ever said anything, but I withdrew myself from that job shortly thereafter, fearing I couldn't be reliable for them, and just returned to a job with a "known routine" where I could get by. Missed opportunity. Alcohol is a funny one. I don't drink at all for now, but I always had mixed response to alcohol... it seems it can help me but it easily bites back. This is an obvious "no-no" but for some reason I was able to exercise unusually well on alcohol... provided I kept the water flowing to compensate! This was my "naughtiest" self-treatment Might be something to it physiologically... I might have to see if a low-dose benzo is similar. Salt. Ahh yes... nice to have a "doctor's excuse" to pour on the salt! I love it!

Niacin, like many B vitamins, is associated with "energy metabolism" so it's a candidate for any thing marketed to "sports" and "energy". Some tout it as helpful for glucose stabilization & insulin resistance... perhaps it does that, not sure... there are advocates/studies. It is famous for a "niacin flush" which is a temporary histamine response in the skin... perhaps similar to some POTS flushing (though I think the two feel a bit different). I tried to see if it did much for me energy wise, but it was minimal and hard to tell (things are so variable to begin with that finding a pattern is tough). I did like inducing and getting an intense flush over with on my own schedule! One builds up a tolerance to niacin, requiring higher and higher dose to get the flush again. There is a remote chance that I was helping keep away some POTS flushing by building up this niacine-histamine resistance. That is speculative, but I did have that subjective sense. Obviously, that sort of "experimental" approach doesn't apply to helping a child. The "flush" thing is harmless but can be a bit alarming or irritating. I throw it out there as background info and because it can explain some feeling of "response" to niacin... and also hints at potential helpful effect from regular use. Higher doses of niacin are likely in a multi-vitamin, and certain to be in a "B vitamin" supplement, since it is one of the essentials.

Travel safe and go get yourself healthy... we'll be pulling for you.

Ahh, Farrah... I can see why many emulated her. That is a rather cute story! ...for some reason I mostly dreamt of Genie! Oh yeah. The heat intolerance has been there for a while... and certain seasons always felt better... but certainly not a hot summer. "allergic to Home Depot and Lowes"... that's a good one! I think I'm allergic to most shopping, although those two are more worth the effort (a guy thing), and I now see why I've had some especially bad times waiting in lines and such.

Long live the 80's!!! Try Gookinaid/Vitalyte too! I used to live near Dr. Gookin so it's sentimental to me, like the San Diego Chicken... but might be handy for others. Here's a discussion and home-brew option like the good ones others have already mentioned (I like the idea of "No Salt" as a cheap potassium source). Of course, be cautious to get good proportion since electrolytes are so important.

I didn't know about POTS until recently. I didn't know it existed. I didn't know my heart rate (and other stuff) did such strange things. One thing that was uncanny was reading advised "lifestyle changes" that can help. I had already bumped in to some on my own! Did you "intuitively" find ways to help yourself? Did this happen long before a medical explanation or advice was available? (Please forgive me if this is an old/common topic) Some of my personal examples: * Had years of "mysterious uneasy feeling" sleeping in a regular bed, and slept in a recliner instead (at an elevated head angle) literally all but a few nights. I had no explanation but when I was free to do so... I always chose the recliner. (No, there wasn't an angry spouse in the bed to otherwise explain this * For quite some time, I've been a waterholic... even before it was "cool"! I literally made up the rule for myself that I would slam a big glass of water between each coffee. This combo worked for me while coffee alone drained me worse than none! * I make adaptations of avoidance, withdrawal, and detached sensation & behavior. I "numb out" to counter what would otherwise be panic (so I'm super-mellow on the outside rather than appearing anxiety prone) and avoiding things is just part of dealing with such a condition. * Despite no known allergies, I "like" Claritin-D enough to tolerate some extra palpiness! Maybe the "pressor", "vasoconstrictive" and other effects are especially helpful. I'm hoping more direct meds will assist. * I consciously decided (and even said to others), that for me "more salt was better"... despite obvious common knowledge. Now I know why I'm a contrarian in this issue! Did you have any quirky, eerie, tragic or humorous such "coincidences" that suddenly made sense once your knowledge of POTS/OI/other came into the picture?

Each drug is different, I'm afraid. It's over my head except for the simplest cases. To my knowledge, being "metabolized" can mean "activating", "deactivating" or just switching between two active chemicals with different characteristics and lifetimes. Plus there is a foot-race with processes that are filtering each thing out. So I believe the answer is a clear: It Depends!Genetically for that particular enzyme, they say people can be slow, intermediate, rapid or ultra-rapid metabolizers. Again, this could mean something different for each drug... and there are other such enzymes too! However, if you happen to know you're an unusual metabolizer for one of the drugs... it gives a vague heads-up for others on the list. Interestingly, the drugs themselves can promote or inhibit the enzyme... affecting other drugs and "feeding-back" on themselves. The Codeine case is simpler, because codeine itself is inert in the body and relies entirely on that liver enzyme to convert it into the active ingredient (so they call it a "prodrug"). In those simple cases, if the activating enzyme is deficient, the drug is less effective. But I think propanolol might be the opposite, where "metabolizing" means de-activating, perhaps filtering it before it hits the blood... but I'm uncertain. So if they measured high amounts already in the blood, I don't think enzyme metabolism would explain an insensitivity (perhaps denervation or competitive agent???). The activity of these things changes, despite a genetic predisposition. However, this doesn't explain why people's sensitivities change over time with POTS... not directly. Perhaps indirectly, IF there are any indirect autonomic influences on these things... I don't know if that's possible or not. It's fascinating and confusing to ponder, at least!

I'm mostly on the insensitive side so far, but had some mild weirdness from fludrocortisone (and minimal benefit, though I might try higher dose eventually). The genetic testing that Maggie brings up is really intriguing. I've also read of research attempts to use a set of reaction tests to suss out potential issues (kind of like an allergy test does)... but that is less precise. I happen to be totally immune to codeine & similar. I do not know yet, but that trait implicates this: http://www.fpnotebook.com/Pharm/Metabolism...502d6Isnzym.htm Note that other things that come up with POTSen (some beta blockers, some SSRI's, benadryl) also interact in various ways with CP450-2D6... so I have some heads-up that things might need dosing or drug selection considerations. So far, this is just a guesswork thing or something perhaps to explain things later after trial-and-error which is inevitable anyway (unless I can do that genetic thing and know for sure).

I too hope more can be pinned down as to specific causes. Subjectively, I don't sense that the hypoperfusions are "causing" bouts of prolonged weakness and malaise... there's some common factor or confluence of things, but it's not a simple direct relationship for sure! Looks like some new stuff like "Substance P" is getting some scrutiny... that would be the name of my punk band (if I had one)... it's a neurotransmitter specifically for pain

I'm late to the show, but this topic seems well worth appending to. Keep in mind POTS is not a disease, but a set of symptoms with several ways to get to it. Short answer, early precipitant for me was most likely an MTBI in adolescence. A full syncope and "fatigue wall" followed this by 6+ months and then repeated periodically. This is a "mild addisons" looking thing, including susceptibility to stress. My personal suspects are overt HPA damage or mysterious dysfunction in central trunk (I am also 1 quarter-elephant, on my mom's side). I've only had an MRI for an unrelated body impact (collapsed lung, broken ribs) but if you cut the check you can scan me as you see fit... I love the smell of radio-isotope tracer in the morning After that, had some "set-backs" and went through years of having CFS-like suspicions and bouts of seizure or pseudo-seizure (still on rare occasion)... but knew better than to raise the issues ("all-in-your-head" phobia... since I'm sure some of it is). Then had body injury (remote chance that adrenals or other were aggravated, who knows)... recovered, but had "weird stuff" start creeping in to the picture. Eventually the "mysterious flu-like thing that snowballed" scenario happened to me too! Broke down and saw doc when it wouldn't go away and others took notice. Took predisone/claritin-D/antibiotic as directed which culminated in feeling way better, then having a full blown panic attack (first ever) and got to hear some docs say "you're just dehydrated & anxiety prone". For couple years some other panic-like things of various "flavors" recurred but diminishing over time (no treatment, I'm a "lone sufferer" type). Then another mysterious illness thing, but nurse had trouble measuring vitals on separate occasions, even double-checking her equipment! I joked that perhaps I was dead and didn't know it. That was how I felt. Requested doxycycline and took it for a month (for my own non-POTS theory at the time... hadn't heard of POTS yet). No dramatic or permanent effect, but thing went away for a bit as it usually does. In the months after that, I purchased a few gadgets, read a few thousand web pages & articles, worked with primary care doc patiently and often, and am now joining the POTS club on probationary status... with cardio & TTT likely to confirm shortly (but perhaps my diagnostic fate will be an odd panhypopituitarism or who knows what, we shall see). Non-productive exertional asthma-like stuff jumped in to the picture suddenly too... plus an unexplained hemoptysis (perhaps one day to be related, perhaps anomalies). You can sprinkle in a sexual abuse as a child and some key emotional traumas later, for good measure and to thoroughly confuse the matter. What I now suspect to be "dissociative" symptoms followed that situation... but the syncope and fatigue pattern was later, shortly after physical (non abuse) injury. Head injury brings it's own happy-family of potential symptoms too... so the full picture is murky (ironic). I have an odd blend of ability and deficit hat doesn't quite balance out. I choose a "detached" front and approach to this stuff, particularly on the surface... but others, especially those that have extra trauma and loss as part of their history, have my sincere sympathy.

Coincidentally, sleep deprivation is also a poor-man's anti-depressant, for whatever reason, although one tends to get a bit loopy Could be considered a "reset button" in some vague ways (seems that way to me)... perhaps akin to the low-dose SSRI technique that is used and helps some. (NMDA-antagonists might gave some profound effect too, but it is an esoteric angle of things due to prohibitive side-effects).