erik

Speaking of BP cuff effects, there is this clever non-invasive technique which might bear out eventually: Evaluation of endothelial dysfunction: flow-mediated dilation. This sort of endothelial dysfunction could be part of many different diseases, maybe it could even play a role in some folks POTS & related things.

Here's some more NET info from a prior post that you may have read. I bumped in to this not long ago when searching for CGRP... a totally different topic although it invites another nexus (migraine, sympathetic activity, blood flow stuff, etc.): Norepinephrine Transporter, Looking for Research

Just a quick note... I believe that phenylephrine is kind of similar, doing the constriction directly... as opposed to pseudoeffedrine which cascades to norepinephrine. I get away with cautious minimal use of either, but the phenylephrine does seem to impact me less overall. It is an OTC ingredient... do you happen to tolerate it in cold/allergy meds... does it give a helpful alpha-agonist effect or backfire?

It seems like it could. I feel a little better wearing a back support thing that compresses my abdomen too. I wore it regularly when I needed to stand for long periods of time a while back and I think it probably helped.

It is a really cool feeling when all these little mysteries fall in to place and one is able to at least feel a little more control over them. Every step counts. I hope the steps can bring some improvement. Good luck to you.

My bad effect zone was somewhere like 7 to 10 days in, which was a few days after getting up to my .1mg (100mcg) target dose.The key rather immediate & noticeable benefit for me is shifting my BP up a bit so that it stays more stable and if it does decide to drop out I'm in less of a symptomatic zone. Other than that, my first time on fludro I was disappointed that it didn't do much for fatigue for me. Second time, and after a couple months, I do think it was helping my fatigue (basically making me more "resilient" to activity). I don't personally get a huge boost like some folks, but I do get enough subtle boost that I continue it. I don't have any noticeable side effect at this point so long as I keep an eye on things and stay short of "edema" and too much bloat feeling. If I were having more side-effect continuously, it would be a tougher call on continuing it. At no point has it removed my pulse increase upon standing, just let me control my BP better... like amplifying my other efforts.

The chest tightness, feeling unnatural and extended duration of effect from exercise that you describe all sound like things to be cautious of. I think a well tempered "rehab" approach would be wise. Some folks have luck keeping cautiously under a certain pulse, then slowly build up a tolerance to more and more over time. Definitely do all you can to be "in good circumstance" when you exercise, like hydration & such. I find most of all that the state I happen to be in before exercising is the most determinant factor to how I respond to it.

1. fatigue - more would be bad but I put up with enough (episodically) already so it's a when & how much thing. Mental fatigue is harder for me to deal with than physical as long as I can still "get by" and don't make myself worse in terms of stamina. 2. gastro-disturbances - I'm usually immune but otherwise a whimp on these... It would have to be minor or temporary if it manages to rock my otherwise iron gut and reaches my soft wimpy core. 3. mental confusion - if it gets me run over in the street that is bad, if I achieve "ignorance/bliss" maybe that's ok so long as I never ever realize how stupid I am. Otherwise, this would have to be mild, specific, or periodic so I can keep a handle on it and keep my ego properly fed. 4. agitation - I am kind of offended that you would even think to put this in your questionnaire. Especially as item number 4, thinking you could sneak it in there and none of us would notice what you are up to. I suspect you made up this whole questionnaire thing just to as me personally about my agitation issues. Is this the case? Personally, I think you should repeal this item immediately. 5. loss of sense of humour, mild depression - Tough one. If I thought the fact that a square is also a rectangle was incredibly funny, that might be bad. If I couldn't laugh at myself for sometimes caring about that very fact... that would be far worse. I would prefer to drug the rest of the world so they thought I was funny... you know, like they did back in the 60's.

Do you know details of the "genetic neuro counter-reaction to overstimulation" thingy I'm thinking of... was it Gly16 perhaps? I'm going to have to read up and figure out. It could be devastating when combined with NET deficiency (and perhaps a partial DBH deficiency & some side cardio factors too boot)! It seems it could also affect whether "reuptake inhibitor" therapies backfire or help. Did someone have a post about beta-receptor genetic variations lately? Some very profound "confluences" seem possible.

When I'm not on florinef I eat mass salt. This get's me 10mmHg boost at best and maybe some stability (everyone will vary, of course). When I'm on fludro, I taper my salt intake and the fludro mostly works enough for me off of regular intake (most people's diets have a lot of salt in them already). NSAIDS like ibuprofen contribute to volume building via prostaglandins so they are partly cumulative with fludro on blood volume. For me, the combo gives higher BP than I want. They don't create a crisis or anything, they just work in same direction so be aware of their effects (be aware of any diuretic or pressor or volume builder if you can . If I combine high salt/water plus 0.1 fludro I go too high with BP (again people will vary, you've got to feel this out yourself over time). To drop BP I minimize the quick-actors like salt & water first. My weight scale is my quickest judgment of hydration (other than my personal "sense"). I had headache & moodiness for 3 days my first time on fludro even when going cautiously from .05 to .1 but I watched my BP and it was ok. After that, no problemo & it started helping instead. Now I can jump in at any dose without issue, like my body knows what to do with it and it isn't a foreign invader throwing me out of whack. I almost quit that first time, though. This is a touchy judgment call between you and your doc. Reportedly some people can have "unsafe" reactions, others are merely "uncomfortable". I do not know and will not attempt to define "unsafe"

Arrhythmia is always a possibility to keep in the back of your mind. Some emerge based upon cardiac circumstance such as "high bpm" or related. I get "LO" when greg-brady crashes the party (like low 30bpm's). I get "ERR" if I squiggle or most often if I'm abyrhythmic (I can't help, I was born that way . I am overly gadgety person and end up doing most of my readings with BP/pulse meter at same time as Pulse/Ox (psych's call this OGD... Obsessive Gadget Disorder). Anywho, the Pulse/Ox shows me a graph of my "trace" (though it doesn't record this permanently)... so I can "see" when my stuff gets weird (and I'm accounting for the pulse-ox being sensitive to motion & other factors which I am cautious about). If my pulse trace is rather whacky, I'll get "double readings" or "half readings" for pulse from my BP meter... or just the "ERR" thing. Some of the BP meters out there claim to be able to detect some arrhythmias... not sure how well they do at that. If you do suspect arrhythmia, consider cardiac consult, stress test, holter, all that.

Before discovering POTS, and contemplating myself back to my childhood, I "self assess" to be SCT (sluggish cognitive tempo) which is now called ADD-PI or ADHD-PI. Vandy found that non-impulsive ADHD variant to be associated with NET: Genetics may explain three types of ADHD BTW, some folks "characterize" depression in similar ways... and tailor treatments toward different monoamines. Hmm, what of the DT DAT (DopAmine Transport) & POTS... on top of NET... both genetically, managed by natural feedback loops (enzyme regulation loops), etc.For POTS & ADHD, I am unclear if NET is determined to be a cause or a variant/exacerbater. For example, there is also a genetic variant that causes nerves to counter-regulate less/more against over-stimulation (it is associated with norepinephrine levels, essential hypertension and such). The combination of NET deficiency (which enhances "umph" of each nerve firing) with a diminished counter-regulation against that seems like a particularly potent circumstance. Given that just the latter alone is associated with hypertension, it seems like one can argue that these things should produce a significantly different "presentation" of POTS... just as my ADHD looks nothing like ADHD, it looks like Sluggish Cognitive Tempo and Withdrawal... polar opposite of Hyperactivity and Acting-Out... yet internally, it is same. Fascinating stuff.

It would be tempting to try a NMES (like TENS) or NMES/constriction-combo to see if it can subtly keep the muscle pump active, fight pooling & of course, help build & maintain it for those with exercise challenges. Might keep the need for noticeable fidgeting down a little: http://dinet.ipbhost.com/index.php?showtop...mp;#entry123213

When I was scrounging for info related to the M3 muscarinic agonist, Evoxac as well as looking at Sjogren's in some detail, I came across a few things in that region. I think generally, secretions are muscarinic receptor induced (which are very slow nerve responses... since they must result in "production" of something rather than just instantaneous relay of a signal). They also tend to be "frequency" dependent (though it turns out other nerves have some of that too). Anyway, I vaguely recall that there is one thing that influences "flow" and a separate one that affects "viscosity"... and also sinus stuff is partly just tears (or one of the several components of tears... they're more complicated than one might think). Is there a chance this is a bizarre neurological problem... like a kind of unusual neuropathy that happened at the same time as the POTS inducing problem (sometimes neuropathy induced)? Maybe even an auto-immune thing (like Sjogren's... which has no rule about starting with the eyes + saliva first, BTW). Has (or can) a neurologist test those nerves out somehow... or maybe speculate as to whether this is even a possibility? It seems more conspicuous than general sinus troubles (even though some sinus meds do help alleviate it a bit for you). Or are there some "antibodies" a rheumy (or whoever) might check? Evoxac was hoped to help with my dryish eyes, but mostly just boosts saliva. Could something up higher, like Restasis end up loosening sinuses (assuming my memory about there being a tear/sinus connection is correct)? Sounds crazy but perhaps an angle to research if nothing else pans out. It just sounds like they're stuck on and stuck in "thick" mode (or maybe that's me

Maybe concerta rather than cocaine? Safer way to maintain steady chronic exposure clinically.

Here's an alternate that might work automatically for a few folks (this stuff will vary based on browsers & settings & such). If that doesn't work, try "copy & paste" of the first alternate link, the one starting with "mms://haanstra...." which is a very "raw" link and where the video technically "resides". Unfortunately the forum alters the first alternate link when it is embedded and clickable (since it is an "mms" rather than "http" link) which breaks it. Anyway, it can work for some by pasting it into your browser or directly into something like Windows Media Player or VLC if you have that. The reason this is tricky is that it is a streaming video. It seems like the original site maybe forgot to set the "Content-Type" properly... or similar trouble. Hopefully, the original site will fix their issue but in the mean time jumping through some extra hoops can work in some cases, perhaps not all. +++ He he he. You're right, the squat can be suspicious! It also takes practice to get out of since the transition to upright has to be made very cautiously! I've also just gone all the way to the floor and pretended to be "doing something useful" like taking notes! If you carry a camelbak at most times as I do, or just a backpack or other bag, you can fiddle with that and look less conspicuous! Or maybe just "bust a move" after you get your bearings if you feel like it

I stagger about in a daze often enough. Sometimes a worse period has an easy explanation for me (like bad diet practice recently, not being perfect about hydration in the prior days, perhaps pushing exercise hard at the wrong time, etc.) sometimes it seems out of the blue. Be aware that a BM is said to be similar to a Valsalva Maneuver and we, as a people, tend to have exaggerated response to that! It's one of the autonomic tests in which we excel! We are overachievers I guess.

We've definitely got "manual transmissions" alright! Great analogy! Maybe some stripped gears in there too sometimes... and she'll drop into reverse when you're not lookin'. Most folks have full auto or even nice smooth "belt drive" models... lucky ducks!

I don't know much about laughing gas. I think in general anesthesias tend to tamper with BP so it seems like a possibility. Also, an injury to the neck can damage the carotid sinus which is critical to autonomic BP regulation and perhaps that had (has) to heal up a bit (or recover from local inflammation)??? After a head trauma, I had amnesia of everything except hearing so I can agree with you that hearing is one of the more persistent senses for me too! In my case, I was reportedly still experiencing other senses but memory traces weren't making it, except for hearing. As I remember it, people were just kind of "around" and I remember the conversation and voice qualities... but not their faces, scents, feel, anything... just voices. They say I was looking right at them & interacting. Not by my memory! Similar but different! I could have been in a "natural dissociative" state a.k.a. "mental shock"... whereas laughing gas should induce a chemical dissociative state. I could have had physical brain anomalies whereas you might have had similar from such hypoxia. It is funny that for each of us, hearing made it through! Are you recovering ok?

So the phrase says that the subtype is characterized by either a persistent or a temporary-while-standing reduction to the parasympathetic activity... hence, "tonic or orthostatic". Am I parsing the sentence correctly? I don't suppose there is a "poor man's" venous-occlusion-strain-gauge-plethysmography method out there? Something safe to do at home like the "poor man's tilt"? Any way to semi-reliably infer one's flow rates? If a pulse increase is slow and steady and coincides with steady appearance & exacerbation of other "sympathetic" symptoms like sweating, trembling, tingling, etc. would that sound characteristic of a "sympathetic tachycardia"? Would a reflex tachycardia be something like a reflex bradycardia (which is slowing of heart trying to counter a BP rise)? When the compensation is successful, one doesn't necessarily even see the BP change, however such reflex tachycardia is presumed in simple OH circumstances (where BP does drop) which is the case with hypovolemia. That reflex response is actually said to occur in normal people during orthostatic stress as part of an expected response to counter fluid shift. Perhaps there is a further distinction in the context of POTS, like "exaggerated" or hyper-reactive or something? Perhaps "baroreflex sensitivity" is the observation being alluded to... that is specifically measurable & studied in a number of ways (and its deviations enjoy correlations of various sorts such as with depression & essential hypertension, coincidentally).

If sitting at a computer I just fidget & shift positions continuously. I have laptop now and I really struggle to use it comfortably in any position or configuration. Either my neck, back, wrists, eyes or something is always being hurt trying to use the thing so I just shift around regularly and spread the pain. The most tolerable position happens to make me drowsy so then I lose focus or get lulled to sleep (handy at night though). The most alerting position hurts my neck and tires me out so I get physically drained & tired. My best long duration computer use happened in a recliner. An ideal setup might involve a flatscreen on a swivel-arm to get it right where you like it (keeping head angle as you see fit). One can then use a track-ball rather than dealing with a mouse (which needs a steady flat surface). Just having the screen slightly off to the side works fine if you don't have a swivel-mount or a flat screen. Might be worth a shot if you are a "recliner" type.

I do ok in cold, but I get the chest/heart/lung/back discomfort as part of the last phase of standing too long (not long before I will eventually go faint).

As a temporary workaround, depending on your browser settings and what media viewer you tend to use, this alternate link may or may not work in the mean time: mms://haanstra-wm.ic.uva.nl/avc/amc/interne_geneeskunde/bloeddruk-eng.wmv?MSWMExt=.asf Very handy demo. For some reason I'm not a leg crosser usually. When it hits, it hits suddenly and I'm in the "squat" immediately. It is the reason I end up having to talk to total strangers about things some times... depending on when it strikes. One isn't likely to be very articulate at that moment, so letting people know that everything is ok can be challenging!

Wearing a "kidney belt" or "back support thingy" that constricts the middle section might be worth a shot, especially for abdominal poolers.

Buspirone comes to mind (though there are many many other things) since it's characteristically anti-depressant & especially anxiolytic. Who knows, maybe it helps with autonomics stuff... I wouldn't know. SSRI's and other things are characterized by initial exacerbation of problems, followed by eventual clinical benefit so be sure to consider that. Also, therapeutic benefit can be dose dependent, with too high or too low being problem zones (though "safety" dose issues are really minimal). Compounding that, many anti-depressents depend upon a "steady state" to be eventually reached but up to 10% of folks have variation in liver metabolism of those drugs... meaning their necessary target dose will be either higher or lower than a doc is expecting to see (and other meds, herbs, foods can exaggerate or mute these metabolisms too). Just a few generic complications to always keep in mind. Finding successful anti-depressant treatment can be easy for some, and take years of patience & bad effects for others... similar to dysautonomia I suppose. With both, it could get exponentially bad to find the right med regime. In the "vierd" side of things, there is an antidepressant out there, used in but one country, which is an SNRE... the polar opposite of SSRI's but still a successful anti-depressant. I "have a friend" that might try it for their autonomic-disorder some day, to see if it happens to help adjust the autonomic system to good effect (like SSRI & SNRI can do for some folks). Just another twist... maybe autonomic specialists could investigate that as a potential option for those that have bad result from thorough SSRI & SNRI & DNRI attempts... or just as a "research topic". It is interesting to note that serotonin is probably kind of a negative thing when it spills over into hormonal (blood) effect... I think it is a potent inflammatory & leakage agent (perhaps a wee bit bad in context of POTS/CFS). Reuptake inhibition automatically means increased spillover to some extent (though hopefully nothing too significant)... but maybe reuptake enhancement can make sense for some (and it is still anti-depressant, statistically). Also, playing with the thyroid can be anti-depressant without directly touching other stuff. Glucocorticoid manipulation can be similar. Low dose thyroid or adrenal augmentation is something some folks out there consider. Obviously that is a highly doctor supervised activity as is any personal application of any theories. Additionally, I have read that in cases of people suffering depression specifically due to endocrine dysfunction, traditional anti-depressents most commonly backfire very very badly. In those rare cases, correcting the underlying cause is quite necessary... probably more so than in autonomic dysfunction. So be sure to screen for endocrine stuff... or if anti-depressants give bad result... re-consider such possibilities thoroughly. A shrink may not be inclined to think of this. Lastly, in line with baroreflex stuff (which that study considered) here is another study. Baroreflex variations just happen to be suspicious in both POTS and even in hypertension too (in various ways), right? Baroreflex Sensitivity Is Reduced in Depression For some folks, baroreflex can be a part of their POTS... though by one view of it, it could actually be protective in a way (getting depressed could be a helpful adaptation just like "fatigue" can be a helpful protection from underlying problem & damage)... or if nothing else the old standard "causing different presentations" is always handy!