erik

Well, I hope the antibiotic goes well... maybe you will even have some extra benefit from it like some people get. I took a month of doxycycline a while back on suspicion of infection exposure (leptospirosis), it was probably just POTS stuff instead... but I did have a good run after that time. Fingers crossed for you.

That is good. All out damage would likely be much worse than a dysregulation or whatever is going on. I hope they can track something down and fix it.

Ahhahaha.... Ironic. Yes, I would have to spell that word wrong out of all of 'em! I guess I know what my subconscious thinks on the issue! Yes... I lose consciousness slowly enough that I think I can strategically place my body if needed! I could face lawsuit though, you know some criminal would turn it around on me if I managed to squish 'em! So glad they had some nights available... I wouldn't have taken 3 days in a row otherwise... and I'd be very very concerned about making it through 1 day if it's hot. BTW, it's just temporary for a big event, but maybe I can get a foot in the door. 3rd day is big event so couldn't skip, but I turned down 1 after-event so I can rest. I know I can do it, provided I don't happen to have (or trigger) a major episode for me... some luck and effort and I should make it through ok.

Just got an ad for "Align" probiotic (probably from google noticing my searches and such)! I did some searching and did find this article which argues for it's general legitimacy as an OTC probiotic (but of course it's just a "press release"): http://www.reuters.com/article/pressReleas...009+PRN20090205 Wouldn't know how it compares to a "script" approach, but just thought I'd throw it out there.

Not sure how much it adds to the picture, but this is yet another take on temperature stuff from a dysautonomia & mitochondrial perspective. Dysautonomia: Body temperature, heart rate, and more: http://www.mitoaction.org/blog/dysautonomia-body-temperature There is an hour & a half teleconference linked on this page too. I have yet to listen to it... not sure if it mentions temperature or just general autonomic dysfunction stuff.

Bumped in to this and it seems like a rich and potentially handy collection of information & resources. I searched for abledata and didn't find a prior post: Funding Guide: http://www.abledata.com/abledata_docs/funding.htm Main Page: http://www.abledata.com Information Centers: http://www.abledata.com/abledata.cfm?pagei...ksectiond=19326 Funding Resources: http://www.abledata.com/abledata.cfm?pagei...sectionid=19326 It is not dysautonomia-centric (probably not even dysautonomia aware) but might still be useful.

These guys do custom work, their stuff is wearable and some of it looks like it would give some basic "stocking" style support as well (or could be made to do so). I also like the sparseness of the "freeStep", though. They, too, mention direct benefit to circulation... which could be directly handy for "poolers" and maybe even indirectly handy for clearing metabolites and helping muscles recover a bit. Of course, I assume their stuff is expensive but if it helped... http://axiobionics.com/ I have email'd them to see if they happen to be aware of POTS and suggest they consider it as a potential market... and gave them link to some basic descriptions and the dinet physician list.

Came across this article, which might be related: Fermentation in the Gut & CFS as a Protective Adaptive Response http://www.prohealth.com/me-cfs/library/sh...cfm?libid=14889

A few redundant articles (for breadth or helping understand the topic by reading different descriptions): http://sacfs.asn.au/news/2009/08/08_13_moderate_exercise.htm http://www.cfids.org/cfidslink/2009/080503.asp http://williamnesse.wordpress.com/2009/01/...ker-for-cfsfms/ I signed up at the "Journal of Pain" but the original article is only available there to "Print subscribers" so the Dutch source above is the way to go (assuming it is identical and that some English free source isn't out there). Interestingly one of the implicated things in the CFS study (a receptor I guess), TRPV1, looks to be integral to temperature regulation (among other things): http://www.painjournalonline.com/article/S...0049-3/abstract Just mentioning that because there is often discussion of temperature flux for autonomics (not saying TRPV1 is necessarily related, just an interesting coincidence).

I know I'm dumb and I don't feel good about the fact that it's not particularly moral to take a job that I'm not well suited to (isn't fair to my employer)... but I have to do something, options are limited, and I know I can do it! I'm only committed to 3 nights (no sun & heat problem and fewer public folks around, thankfully) and I should be able to walk around & wiggle as needed (which makes upright more tolerable). I'm going to "train" before hand a bit and try to find a compromise in hydration that doesn't require excessive pee breaks... then rest up well prior to the actual job. This gig was going to start a day after an airplane flight, but thankfully that is canceled! Don't worry, I won't be directing traffic and I will be unarmed, except for my Inspector Clouseau like wit & martial arts skills... thanks to by buddy Kato who keeps me hyper-vigilant . Anyway, any survival tips? Or perhaps just wish me good luck (or tell me that I am in fact a duface... I can take it .

I have read that a BM is akin to the "valsalva maneuver" and "our people" are known for abnormal response to that... it can also precipitate funny heart stuff: http://www.cvphysiology.com/Hemodynamics/H014.htm I know they say "when a person strains" an you're not straining... but I personally figure lesser efforts can still do things. On rare occasion, I'll get a little "mild spinning sensation" during BM... and usually I'm autonomically calmer after and autonomically volatile before.

Me too. Good for dippin'. And Wendy's salt packs are indeed handy. The salt on the fry "activates" the super-frosty goodness. I could probably buy salt packets at Costco or something... but I think the therapeutic effect from mild adrenaline surge of "slightly overconsuming" an item offered for free does me good... a limbal liberum arbitrium perhaps. (XD is like LOL, right? Smiling face but not on the floor spontaneous laughter )

Maybe something like Amitriptyline or Nortriptyline could help... they happen to have some other potentially beneficial crossover (and of course potential negatives like everything). In the future, perhaps Agomelatine will pan out. One hopes that first hand accounts like the following end up being validated and reproduced for others: http://www.dr-bob.org/babble/20090322/msgs/886827.html Wishful thinking, I know... but one can "dream" Get it??? I made a sleeper of a sleep joke!!!

I've heard of a person with POTS plus several other conditions that had sudden crying immediately upon standing (and usually no memory of the episodes). She had a seizure disorder as well as other stuff that could tie in with such things. I don't think her docs had any definitive explanation. I don't know if POTS itself fully explains something like that, but given that the brain can become starved enough for full syncope in some people at some times, it seems like many things are possible (like triggering an isolated uncontrolled "limbic" response, or cascading into a simple-partial seizure if one is prone to that, like in TLE). Simple partial seizures can reportedly show as waves of intense emotion... as can "aura" to seizure or migraine. I have personally had out of place intense rushes of various emotions... usually extremely negative ones! Some were literally only a few seconds of "incredible horror", others were longer lasting but less profound. They were not timed solely upon standing, but *were* prevalent during periods of time when other POTS stuff was especially active. I personally figure there is a connection. I've suspected I may be partly susceptible to simple-partial seizure but haven't had opportunity to pursue that medically yet (and such diagnosis isn't trivial). I did manage to provoke such an incident timed exactly with a hypoglycemic drop, which makes me all the more suspicious of seizure. That is all unofficial and unwise to do to yourself, especially if you already have significant symptoms (mine are significantly disruptive overall, but mild compared to many other people here). There are also more esoteric things like synesthesia that might be at play. For example, the physiological triggers from orthostatic stress could be causing a response that is essentially the same as for other POTS folks (e.g. I will feel very "uncomfortable" or agitated if trying to stand still for a while... basically "anxious" but not spinning out of control even if I'm starting to faint). But synesthesia describes a phenomenon where one individual could end up experiencing the same thing differently... either having a different associated emotion or having both kind of cascaded. It is an esoteric field though... a research concept rather than medical so that's not much help. Have docs explored the possibility of a seizure disorder being present along with POTS/dysautonomia? Have they considered any meds that might be along those lines ("off label") just in case they could help? Sometimes when things are mysterious it can come to experimentation like that even though it is problematic.

Interesting. Sounds like a reasonable thing to pursue. The known symptoms certainly cross over to POTS/CFS realm. The "chemical sensitivities" factor is intriguing. Thank you for the link. Please keep us updated on your progress. I hope your symptoms continue to subside.

I sure hope something can help. I've only had very very minimal gastro troubles and even that is nasty. I hope you can find relief somehow. I can at least offer sympathy... digestive troubles are so uncomfortable, sometimes worse than excruciating "simple" pain. I have minimal experience and it is just with the old standard "L. acidophilus". Have not had any problems so far after a few weeks of taking these basic OTC probiotic capsules... but I'm usually ok intestinal-wise. This site does say it's considered "generally believed to be safe with few side effects, oral L. acidophilus should be avoided in people with intestinal damage, a weakened immune system, or with overgrowth of intestinal bacteria": http://www.nlm.nih.gov/medlineplus/druginf...cidophilus.html Sorry, just a really basic "old school" probiotic and no special insight. I wish you the best.

I haven't had it in a while but I like peanut butter, bananas & garlic (like on a sandwich)... and you can add salt to that. Salty avocado is great... they're pricey so I just have those when they're in season and falling off the trees here, for free. I put salt on pancakes, add it to protein drinks, eat it straight (I steal little packets from places to carry with me... shhh, don't tell). Like Bubba Gump Shrimp where everything is shrimp... maybe there could be a salt restaurant? "Steak 'n' Salt, Salt Kabobs, Fried Salt, Salty Ice Cream topped with Salt, Salt 'n' Chips, Salt Beer..." Or "Battle Salt" on Iron Chef America?

A "beta-blocker" would suppress sites (or stimulatory agents of such sites) that stimulate vasodilation... the beta-adrenergic receptors. So those that are "vasoselective" or universal (not simply cardio-selective) would tend to counteract the "flush" signal directly. Beta activation = dilation = more blood. Beta-blockade means less of that... means less dilation... implies constriction and no flushey! Even if a beta-blocker MOSTLY is cardio-selective... they can still spill over to some extent (even varying by personal sensitivities). But what the smooth muscle controlling dilation does is a complicated push & pull between many signals! Alpha-adrenergic, beta-adrenergic, histamine, kinin... maybe direct neuronal regulation? I always figure there could be yet-unknown regulators out there too! The only little rule I recall is that "alpha" trumps "beta"... but otherwise, which signal "wins" the battle is well beyond me! For example, an vasoconstricting alpha-agonist like norepinephrine would tend to "override" a beta-agonist like an asthma med (though those tend to be things selective to bronchioles... not veins). Not coincidentally a potential side effect of asthma meds is flushing! Histamines hit the H1 & H2 receptors and have a very complicated overlayed coordinated or oppositional effect... for example, they can swing between causing vasoconstriction to causing vasodilation based on exact concentrations! Throw in "kinins" which act similar to histamine but are different and involved in different feedback loops and who knows what else... and you've got a pretty tricky picture that probably even the best braniacs out there don't fully understand! Histamine Vaso-constriction/dilation Experiment: http://www.ncbi.nlm.nih.gov/pubmed/16337938 I don't know what signal the body would tend to put out in response to "desire to cool oneself". It could lower the level of an alpha-agonist, raise a beta-agonist, go to a specific concentration of a histamine or kinin, and/or do something neuronally! And these can also create incidental impact elsewhere in the body to the extent that "selectivity" fails or confuses feedback mechanisms.

Valliali, I think a "standard explanation" of flushing is to divert blood to surface tissues to facilitate heat exchange. When in cold, one would expect the opposite. If your body has been doing something to counter the cold, something to try to warm the core metabolically or with muscle activity, then you go inside perhaps it is inappropriately continuing that process. Then a flushing response could be explained by trying to then cool you down to counter the out of control internal warming. If that were the case, then the flushing itself would be "normal"... but the underlying overreactive/overextended temperature regulation response would be a dysfunction. Just a speculation, of course. I suppose extreme cold exposure could be akin to "cold pressor response" like what some autonomic docs measure. We tend to have exaggerated response there as well. From memory, I think I'm usually refreshed even by extreme cold... though lately there is a funny thing personally: After a cold shower, I tend to sweat a lot! Maybe my body overdoes the "rewarming" process and then has to swing back the other way too???

Lately, I'm almost always tremulous. In the past, this would come only when I was pretty exhausted and it tended to pick on specific muscles... but now I wake up that way and it is most of my body. I can feel somewhat rested but never (or very rarely) feel fully rested... like I very rarely feel very healthy overall (but I'm spared from super severe pain or anything). Oddly, a recent wave of significant muscle pain/soreness was timed with feeling a bit better rested and mentally alert, especially waking. But that has passed and the forecast is "foggy with fatigue likely" most mornings again! Like you, I'm more orthostatically challenged in the AM (based on my frequent supine vs standing measures), even if I drink tons of water and pee significantly hours before getting up (but of course the body can be dehydrated yet still dump intaken water). Had thought maybe I was hypoglycemic from overnight fast but glucose tests were normal even at tremulous times. I don't have any overt GI issues (unless a recent chronic "pain in the but" is not muscular but is internal... don't know). Rarely a headache in recent years (used to have many long ago, likely just muscle tension, though family has significant history of migraine... perhaps any brain blood flow problems I inherited are less painful migraine and more POTSy).

Glad to hear that. I certainly hope the worst is past and that no pneumonia develops. Fingers crossed.

Yeah, I felt really good then had crash episode of panic, dissociation, inability to spell simple words, etc. I think if I had managed the end of that treatment better I could have avoided the problem part. But I felt so darn good I didn't think about it (corticosteroids can on occasion cause delusion but that wasn't it... I just felt good). As messed up as I felt during the crash, it was actually a brief "window" of feeling healthy in a different way. It seems like often we're never totally well and that the problem shifts around just like Ms. Poppet describes. For me, it was a momentary glimmer that made me think there might actually be "a healthy" out there somewhere for me (I had long given up prior, like 20 years of "given up"). That course of treatment ended my sinus infection that had lasted more than a month! My doc described the combo of antibiotics, corticosteroid, and claritin in a way that made it sound kind of "standard" for that, even if it's suspected of being viral. Stuff like that has its risks but it might be something that could help. I'd hate to recommend something that ended up causing a worse problem, so I include the whole story (including my subsequent crash). Has anyone else had luck with that combo for a sinus infection problem? Is it standard? Also, I sometimes take cold medicines when I'm not sick because I tend to feel better from them too.

I haven't been in true cold weather since learning about autonomic probs and specific symptoms to keep an eye on... however, when I lived in the midwest, fall was my "season of renewal" whereas I guess spring is supposed to be! In the cool I felt mental clarity, not necessarily extra "ability" or anything, but just feeling clearer and more able to concentrate. Winter was somewhat similar except going in to an overheated indoor area immediately crushed my ability to think. Luckily I lived in a semi-heated area (garage) so much of my time was pleasantly cool. When I worked 12 hr shift manufacturing plant work, thankfully it was in large semi-heated areas or I'd not have survived. Living in a generally warm area now, I notice this effect day to day... even hour to hour (the weather changes that quickly here)... though I think when I was in a more consistent cold climate it snowballed in a positive way. I may return to that if other interventions don't help enough.

I do think there is some natural cortisol response to illness & stress. Just one of the big players that's involved amid what I assume are thousands of other possibilities and body processes. Once for what appeared to be a persistent sinus thingy, I was prescribed antibiotics, cortisol/similar, and claritin. Ironic because taking an exogenous glucocorticoid tends to suppress the immune system hard so you're kind of manually taking over for the process. Took a while, but I felt pretty strong afterward, then crashed hard at the end and ended up in an urgent care clinic! A "mild Addisons" (if such a thing existed) could explain most of my POTS symptoms in general.

Great article. That's interesting research for sure! I agree with the article especially in giving kudos to investigating "alternate" theories... rather than jumping on consensus bandwagons. Reportedly many CFS folks do test positive for POTS. I read one researcher that uses the term "CFS-P" (the P standing for POTS) for a major subset of his CFS patients. The Orthostatic Intolerance and POTS crossover is reportedly huge (I think I read like 60 and 40 % respectively... but that is from faulty memory and I can't find that reference). Anyway, for me... I fit nicely into both syndromes (and symptom lists are almost close enough that you could just merge them... though I know people tend to be timid about the CFS stigma and revel in having an easily measured medical sign in their pulse . I'm not sure the emphasis of the research is on vasoconstriction... they seem to mention it and then speculate that it's due to low blood volume (standard explanation). It is great that they've turned up a solid distinguishing feature... that should help legitimatize the syndrome, in addition to being a hopeful avenue for understanding & treatment. It's interesting how they blur the notion of pain & fatigue... I've described my own condition as being "in pain that I don't feel"... like my body is hurting but I don't feel it. I also sense that my post exercise healing process feels flawed. I think this goes beyond a "feeling" though. There still could be some "clearance problem"... who knows... maybe there is an as yet unknown trigger to those overexcited nerves???