erik

Yeah, I've had to cancel my plans for a life of crime due to this concern Otherwise, I'd make a decent Tony Soprano... he fainted every now and then and seemed to manage! If I were ever a suspect, I might volunteer for a lie-detector test just to see the look on the poor analyst's face when his needles start flipping out. "Is he lying???"... "No, sir. He appears to be an alien life form."

I'm sure there are plenty of other possibilities, but one thing to keep in mind is the CYP2D6 metabolism. Many drugs rely on it (either to activate or to clear out), some inhibit it, some promote it, and people can have genetic variability of this too. It can apparently be involved in regular food metabolism, though drug aspects are more commonly documented and examined for interaction. DXM happens to rely on 2D6 enough that it's used as a means of measuring that enzyme's activity level! If you are a slow metabolizer the drug could stay around longer and perhaps induce different effect than typical (though I guess DXM is more associated with tachycardia rather than brady, but who knows). It could impact other drugs, like competing for 2D6 activity and making both clear out slower or preventing the activation of another drug (if it's a prodrug) or changing the duration of an extended release drug (if it's relying on varying half-lives of metabolites). In the case of a beta-blocker this could be key (maybe making both act longer & more intensely??? professional advice would be good to seek of course). Glucocorticoids happen to promote 2D6 activity, so in addition to inherent help from the cortisol boost, perhaps it helped prompt your liver to clear the DXM quicker too!

There seem to be about 50 cop shows on TV. It's not uncommon for lie detectors to get used there... I don't know how often they come up in normal circumstances. I was just thinking about whether someone with a dysautonomia might have rather "odd" responses and either end up being fantastic liars (maybe making especially good spy's... for the Horizontal Intelligence Agency perhaps or maybe we will end up in the clink even if innocent! Just a random thought or maybe these could even be diagnostic tools of some sort???

I can relate... although I'm generally numb to it, I'll get overwhelmed by a rush of longing & sadness from various triggers. Sometimes it is when I see certain "scenes" (people doing certain things), pictures or perhaps music. Oddly, I'll get a deep longing for things that never happened... like a false nostalgia. Basically mourning lost possibilities. Some of this is POTS-limitation related and some is from other stuff. I tend to get on the numb side of things, which it seems can logjam other experience... meaning for me, some cautious embrace of the sad has opened other possibilities in feeling. With some luck, a phase of sadness can be the beginning of better things. And I happen to be watching TV on the computer too

Sounds like they're proposing the possibility of an analog to Phenylketonuria (though perhaps an "acquired" rather than genetic form?). If it exists, it would be quite a pickle.

I used the tables at this site to get rough idea how much of these BCAA's I consumed. I basically followed label indicated dose, which was 4-8g of the blend in my case, meaning from 2g Leucine, 1g Iosleucine, 1g Valine up to twice that: http://www.veganhealth.org/articles/protein/ 4-8 g of "total" protein is modest compared to lots of foods (for example a 4oz steak... kinda small for me... can be in the 30g+ if it's lean). One would definitely consult a professional, but it seems like if one is restricting protein one might actually take some of these isolated essentials to avoid deficiency while minimizing kidney load. But anyway, my "dose" was roughly like eating: 4 to 9 oz peanuts (I have definitely done this much in one sitting...sadly, it's a ton of calories though so not often, but I love the things! 4 to 8 cup white spaghetti (I'd usually eat no more than 3 cups, which is splurging but easy for me 5 to 9 cup kidney beans (I'm lucky to love these and eat a can easily a can or two a day which is about matching a "dose") So given that I was supplementing rather than substituting I had perhaps upped my intake to about 2 or 3 times my normal, and was perhaps doing 2 to 4 times the RDA. I personally took these pre-exercise, rather than both pre & post... that way they were taken alone since I prefer to follow exercise with a light meal & general protein supplement. I do not think my specific intake was dangerous for me, and the product I chose wasn't pushing a mega-dose, but one should probably contrast whatever dose is chosen (or referenced in a study) with comparable dietary intakes and see if it is way out of line. Sometimes with supplement studies, they do very high amounts of things... and perhaps putting it perspective with other things can help assess any risk. Hope these figures can help with that.

Too true. Or a vaccine for that matter! I guess there's a chance there will be something like a "cure" for a solid subset of people some day. Maybe some more detailed studies can pin down what is going on in those people that DO recover from POTS.

In regard to risk... Sorry. I guess that's true, particularly if someone has a condition that precludes these things. I do believe that the "dose" indicated on my product at least, would have brought far lesser kidney load compared to a scoop of standard protein supplement or a can of "Ensure" or a steak (but certainly a doctor should be consulted for such concerns). The blood-brain transit is why these select essential amino-acids are more suspected of being useful "messengers"... so that is indeed worth considering... one is indeed making a "mystery" provocation (particularly if the amount or ratio is far from normal physiological or diet amounts). What dose above normal intake levels are you considering? Do the studies you have read give some guidance on that issue?

I have tried them. My symptoms vary so much that I just can't say if they help or not. I used a bulk powder and supplemented other protein supplements. Mine was "in a precise 2:1:1 ratio of Leucine:Isoleucine:Valine" as the product states! They're just basic amino acids. Some help may come from ensuring a supply of these, but another theory is that their increased presence is a "signal" to other processes in the muscle/low-level metabolism. I guess they have been observed in extra concentration during phases of muscle regeneration, so the hope would be that one can enhance or trigger that signal by occasional "general" presence... or at least make sure they are sufficiently available to the body when it wants to do this on it's own. I've tried extra L-Glutamine as well as a couple other specific amino acids... and generally augment diet with a protein supplement too (though I avoid soy since it is credited with being estrogenic). Very little (basically no) chance for harm from these things. I just don't know if they do anything... it is so hard to tell. I haven't asked a doc.

Cute. Sometimes my Autonomic Nervous System is a rascal and needs a good spanking or talking to. He's lost playstation privileges at this point. Next it's off to military school! Perhaps a strict schedule can help?

I answer to any spelling... "Doofus says what?" ..... "What?" Cool. Got a pair of cycling shorts. Tight and spandexy and most definitely "compressing"! Between that and the "girdle" back-support things (and rather tall tight socks), I should be in good shape. I'm the sort that can prevent the gray-outs by keeping moving so this combination should work for me. I'll do my best to stay awake. Those pesky cell phone cameras can get ya at the worst moments. That's why I didn't want to wear the woman's undergarments... never again (Just kidding of course) There will be TV cameras some of the time too, so at least if I end up narco- or synco-compromised (as in narcolepsy or syncope) I can get my 15 minutes of fame out of the deal!

I love salted green apples too. Watermelon works with salt. Just remembered another quickie that I tried before sleep (not for the syncopal hearts): 1 packet Chicken Ramen in 8 oz lukewarm H2O with extra salt added, 1 tbsp "Frost" flavored powdered Gatorade, 1 tablet Orange flavored Alka-seltser cold plus, 1 tsp Choline biterate powder, 1 tsp Creatine (optional) "Frosty Orange Sour Salty Chicken Bubbly Drink" patent-pending

I don't have known allergies yet I've felt better with Claritin-D, Zyrtec-D, Alka-seltzer Cold, Claritin, etc. One thing to keep in mind, the decongestant combined with the anti-histamine is usually either pseudoeffedrine or phenylephrine (now that meth laws complicate pseudo). Pseudoeffedrine triggers norepinephrine which is vasoconstrictive. So does phenylephrine reportedly. So for me, it's like a my poor man's midodrine... but it has more side effects since it is less "selective" meaning it hits adrenergic receptors elsewhere in the body besides vascular smooth muscles. In my case, that's ok because I tend to be bradycardic and can use a little speeding of the heart (except when I stand up and go tachycardic, of course). For others this can be touchy. I do get more palpy but kind of put up with it. That is a non-histamine explanation for some benefit... but I also have the sense that the anti-histamine helps me too, even though I lack known condition along those lines! I've been trying straight pseudoeffedrine too (Sudafed) to get a handle on how much each component is factoring in to the benefit. So hard to say... but I do think the anti-histamine and pseudoeffedrine induced norepinephrine BOTH help me modestly!

I started a basic old probiotic about a week ago... first time trying this (it was on sale . It's just Acidophilus (like is added to some milks + yogurts). I'm not expecting much, but I'll keep ya posted, too.

Hmm, I had a little motorcycle toy that I would admire. It was good for daydreaming about riding. A quick mental escape from work. I'm generally good at daydreaming.

Feliz Navidad.... errrr, Muchos Compleanos??? "Flop" is a Spanish name, no? Nos gusta la Flop.

"What to eat when you're flat on your back!" --- Salty Flatbread??? I do love a good Paratha (or Roti or Naan)... and a tall cool Mango Lassi as a (probiotic?) yogurt drink to cool any spicy Indian sauce! http://allrecipes.com/HowTo/Indian-Cuisine/Detail.aspx But it is certainly not an easy cuisine to make yourself. For a bedside meal I just grab a Tiger's Milk, a couple salt packs, some NUUN water and protein mix (spiked with gatorade powder if I need sugar)... not gourmet but I keep all within close proximity!

Thank you all so much. The night time is going to be great. I've got several days to flip my sleep sched. Won't be totally settled in, but that can be good sometimes. I've had some beautiful nights around here and I should be able to get into that mode. I have borrowed some back-support things to wear under my shirt... should make being upright less work and easier on the back. Wore one today doing chores and it is very helpful. I might have tendency to abdominal pooling, I don't know... seems like it... so I think it helps with that too. I thought about finding some long underwear... probably a hard thing to find in this warm region. I don't have compression stockings and I REALLY don't want to fake it with woman's pantie hose... now that could lead to a bad start in the business

Glad they salvaged themselves and were able to turn things around. Hope that doc gets a handle on proper care & communication. Say, is "abdominal compression" an exercise... or does it mean wearing a thing that wraps tightly around abdomen... or something else???

Here's the H2S specific spinoff of that other article above (which mentions other potential causes too). It mentions Kefir as a cheap probiotic source: "CFS - hydrogen sulphide, gut bacteria and mitochondrial dysfunction June 2009" http://www.drmyhill.co.uk/article.cfm?id=452 "Probiotics - we should all be taking these all the time and double the dose following antibiotics and gastroenteritis - updated November 2006" http://www.drmyhill.co.uk/article.cfm?id=378 (The "Kefir Store" link seems to be broken, but the author offers her email & phone number... and recipe... and she's in UK) http://en.wikipedia.org/wiki/Kefir Maybe Mead would work too

Oh no. Losing a pet is so hard... especially the quirky ones. And the void left behind is a constant reminder... it was quite some time that I'd start talking to or calling my dog out of habit, only to realize she was no longer there. They become a part of you.

Dang. "Align" is OTC here I think: http://www.costco.com/Browse/Product.aspx?Prodid=11467445 Maybe costco website will let a shipment slip through the cracks and make it to UK?!?! I've ordered stuff that is in "unregulated limbo" from the UK to the US... items that are technically illegal to sell or prescribe here but are perfectly legal to purchase & possess individually. Is there a chance of a reciprocal situation? No way "Align" is scheduled like a narcotic or anything!

Yeah, "it's all Greek to me" too! IgHuh?

I've been unemployed for some time but have managed to hang on to my HSA. I chose high deductible insurance so it's not much help overall but does get me group discounts and covers me if a "standard" catastrophe occurs. Mine happens to be with Blue Shield/Cross which in many states is non-profit (though that makes almost no difference to cost and administration policy... like 3 to 5%). Not a big help for chronic stuff but offers some security, some discounting, and costs less than many peoples' cell phone bills! I might actually be better off with zero insurance, since then I'd be a clearer case! Like with welfare prior to reforms, it's tough to "bootstrap" out and reverse incentives abound... sometimes well intentioned offers are more of a trap than a help. I can relate on the "mental focus" problems especially with computers because they're so "precise". I'm "on" some times and struggling badly at others. Can't be reliable so it's extra tough... especially if someone like a friend tries to help with an offer. Letting down a stranger is bad enough but a friend is worse. Explaining that is a pickle. I get a mild anxiety/phobia now, secondary to my POTS/CFS/whatever... because of the fallout from this dilemma. I'm trying to aim low and dig out of it. It's a chicken 'n' egg thing in a way. I don't know much about alternate health care options (though I know one chap that volunteered for research as a means of funding expensive and non-standard treatment... clinicaltrials.gov ). I bumped in to this thing here... it is focused on "assistance technologies" so it is not a good match for your case, but I think some of the same organizations & resources might still apply for you since their charter is wider. Who knows, if nothing else you could bump in to one such organization that would be understanding enough to hire you for computer work knowing your performance would be intermittent! Or some of these places might have some tips even if they can't directly help: ABLEDATA http://dinet.ipbhost.com/index.php?showtopic=13484

I guess SOMA (Carisoprodol) counts as narcotic though I'm not sure. I took it briefly for muscle pain and I happened to have benefit with no noticeable aggravation of POTS stuff, of course people will vary. On the other hand, Codeine & Vicodin did zero for me (just a little constipation). In the ER, I think IV morphine did do something, but not sure... was a hazy and I think they did some "dissociative" med too (amnesiac) or that's just my natural response. I suspect I may have deficient "cytochrome P450 2D6" liver enzyme activity since that is required to activate Codeine & Vicodin... or perhaps I have something like Melissa with underresponsive receptors. SOMA doesn't require 2D6 activation like the others, which might explain why it worked for me. Or perhaps it's hitting different receptors... I can imagine either is possible. SOMA is known as a "potentiator" of other opiates. If used cautiously to do this, it can allow lower doses of opiates to get same pain relief. This might be a trick useful for someone minimizing narcotic dosage... or maybe it's just adding another med we could mis-react to... but it's a thought. I agree with others that since pain itself is quite likely to aggravate autonomic probs... risk from it's management is generally worth it when necessary.