erik

I think he's had some good remissions in the past, so I hope that's the case now. Or perhaps he's a few weeks away from devising a cure and needs to focus??? I could be mistaken but was he engaged? Maybe the wedding came up and he must "reserve his energy" for the time being???

Bit of a "Thousand-yard stare" seems possible too... given that POTS used to be called "Soldier's Heart". This was the mode I was in when I had it my worst. As my life was destroyed slowly before me.

Not sure how typical it is but I get this way from time to time. Have been almost "catatonic" at worst of times too. I don't know if it's seizure or just "dead tired" fatigue but I wonder about both myself. I've had other things suggestive of seizure/migraine aura too so I keep that in mind but have not been scoped out for such. Benzo's happen to tamp down on seizures so if a benzo like Klonopin is prescribed for POTS, it might happen to help even if there is seizure activity too. The "wearing off" period of a benzo (like a quicker up/down version like Xanax) can be a seizure zone so if things coincided with that it is a subtle clue. Otherwise I guess real testing (even "provocative" seizure testing) is in order? Many things that make POTS worse and are involved in POTS also increase odds of seizure: dehydration, electrolyte imbalance, hypoglycemic response (reactive/relative hypoglycemia), oxygen deprivation (odd flow regulation), "excitable state" such as sympathetic overstim, sleep deprivation, etc. If not a direct link, there are ample indirect interactions to choose from too. Despite all that, I think many folks would just say it's an extreme fatigue state... but hard to know. The obvious seizures go general and move muscles, next obvious involve memory loss and such, the most stealthy are just waves of intense emotion or odd "mental state" without any other likely clues. Those latter type are hard to distinguish from painless migraine, too, it seems.

Thanks. I'm feeling better from changing up meds and resting and such which will last for a little while probably. Still keeping it minimal. I don't exactly have a full "pet theory" just a "pet observation" since much of the PTSD research/theories point to physiological changes that are so similar to POTS observations & theories. Maybe I can work something up in the form of a thread on POTS/PTSD coincidences... basically centering around: hyper-responsive sympathetic system or otherwise perturbed HPA response; the "beta blocker" studies (as post trauma inoculation) that started a few years ago and continue; lack of specific treatment for either but perhaps crossover possibilities; etc. I can't say I'm surprised that docs would say that to some of us POTS folks. Not all, but certainly some. We come in different flavors! In a way, us POTSies are great test cases because we have stronger physiological underpinnings... as opposed to coming from the psychological side where they are more subtle and muddled. Not that we aren't muddled

A normal person during extremely strenuous exercise can go up to 250 mmHg systolic. This doesn't mean that's a good thing to do, just a surprisingly high "normal" for temporary spikes! The "140+ => hypertension" is for persistent mean systolic (sitting) measure. Spikes are good to know about for sure, and great to figure out possible causes and such, but typically a doc will not get alarmed by temporary stuff. I don't know exactly what constitutes a spike and what is a long duration (or frequent enough) to merit concern. Once it's a pattern, then it enters the "statistical risk" realm. Keep them informed of whatever you know, but don't necessarily expect a particular response from them. I've had "extended spikes" either randomly, from NSAID use, from pushing fludro dose, from being sick, from variation in how consistent I am with salt supplementation, etc. I've had a few spurious 180 systolics, but when I frequently got 150/160's I made adjustments. I target 140's since this gives me room for a drop without fainting (I go start going faint earlier than most... like at 100/110 range). Don't take my numbers to mean much... you've got to work with your doc & self observation and whatever other info you can get. There is little "science" to this... just statistics that don't focus on dysautonomiacs or their specific woes. I think it's guesswork + trial & error like most things for us.

Well, hypervigilance is a potential POTS symptom itself. There are theories that the key noradrenaline & adrenaline factors induce this and are also involved in heightening memory intensity and response. One can imagine this is how things are supposed to happen, since the "fight or flight" response is generally due to a heightened threat so there is merit in learning to "overreact" and "lower threshold of coincidence" to similar things from then on. If the sympathetic flood were due to being chased by a bear... it would not be an "overreaction" to later fear the place, similar places, circumstances, scents, lighting, textures, prior scenario, et. al. where you encountered the bear. We operate at higher conceptual levels than that, but still have the low level stuff going on... partly as appropriate, partly from malfunction. Since your "anxiety" is triggered by very high levels of thought (analyzing risk in handling things, understanding germs, etc.) obviously there is extensive interaction between low level autonomics and higher cognition/limbic response. So the physical malfunction of POTS has naturally pushed into psychological realms (probably unavoidable for all of us). I am arguing that for some it can be like a mini-PTSD thing. If you're familiar with that, one ends up with episodes of hypervigilant state, extensive numb state (the opposite, repressed, down or crashed mode), and too little of the "healthy middle" that we are expected to live within for normal society. Throw in ongoing haphazard trigger of the "fight or flight" mode (from merely standing up for example!) and you get a very confused result. One is wired to be "scared of everything". Hypoglycemic response can be similar... and it might not be surprising that POTS is reported to give some folks an exaggerated "reactive hypoglycemic" response (hence the frequent small low GI meals advice). One is not paranoid, anxious, or whatever in the typical sense... but indirectly from the physiological confusion of these powerful base responses. This bleeds over into psychological realm. Perhaps inevitably. I personally am usually in the numb state (which is actually the less glamorous but predominant PTSD state) and every so often get the hypervigilance. Prior trauma sensitizes a person to subsequent amplified trauma experience (meaning less intense things get experienced as though they are more significant than most would find them). Those with PTSD seem to exhibit a statistical skew toward HPA changes akin to those of us with physically induced HPA-response distortions, but to my knowledge they are less pronounced. Some of us have both, which you can imagine is a bit of a mess. These things are studied but not pinned down, of course. I'm just extrapolating from personal stuff mixed with whatever limited insights a few studies have. As to what to do, it sounds like you're handling it well. Your vigilance is focused on the actual threat... in other words you're not refusing to leave the house. You are "on top" of the problem and it isn't consuming you. Maybe the unhealthy heightened intensity will wear off, maybe there are things that can/should be done to ensure that, certainly do what you can to keep your physiological state steady and avoid re-triggering these things. For example, experiencing a full panic response might "reinforce" the triggers you wish to subside. Even though this isn't a psychological disorder, treating it as such can keep it from becoming one. For "probabilities", one could look at this as a "trauma" and figure that without prior trauma history (risk factors) you are in the "likely natural recovery" group, and despite the intensity of what you describe you have a solid handle on it. On the other hand, consulting with expert in the similar psychological realms might give speedy or more ensured recovery. Sorry to babble, but the PTSD/POTS niche is my personal enclave so I get excited if things border on it!

It is speculation twice removed, but aspiration difficulties and being bed-ridden are inducers & contributors to pneumonia. Folks ill with something else (even a brain tumor or other extreme) can pass due to "simple pneumonia" at times, indirectly. Some dysautonomia can include difficulty swallowing and disruptions to breathing... usually MSA and such, but perhaps less so with others from what I've read. Being sick aggravates everything and pneumonia is a tough challenge even in best circumstance. Avoiding it and fighting it off could be tougher with autonomic troubles, and being very ill could push autonomic dysregulation further to extremes. Meds that help or are necessary could backfire or might not have even been a problem. Not sure how one could ever know for sure. Regardless of circumstances/mystery of her tragic death it could be nice to hear other aspects of her life and the challenges she faced and how she must have worked so hard to overcome them. My condolences to her family. I do hope that pride in her accomplishments can assuage their loss. If there is more to be shared of a private battle with dysautonomia, perhaps we can learn that in due time.

There's a chance that an urgent care or ER could throw an EKG on you right away and catch something. Then they can make quick determination as to urgency but more importantly, have record for followup analysis (in context of whole circumstance & symptoms) by a cardio. That's what happened to me with a "sinus bradycardia" caught in ER... the record can be forwarded even if it's not found to be urgent. It is safest and standard recommendation to go to urgent clinic/ER with heart symptoms (baring some former diagnosis and advice from an expert) so I wouldn't feel bad as though you are inconveniencing them. I understand the worry about fleeting symptoms and how they always disappear when given scrutiny, but it should be worth a shot. I'm assuming urgent care places have EKG on hand but maybe a call ahead can clarify that so you don't waste time with one... but if you're feeling sheepish (which I'd advise you not to they are a intended for non-triage situations. Maybe "excitement" of going to such a place, or activity itself like getting there, ends up driving the arrythmia away... which could even be a subtle clue about it in the right hands. Probably a cardio should give you an extended "event" monitor if things don't happen to show "on demand". It's intended for cases like that where the trouble is fleeting. Note that an ER might not "want to hear" about the full history, they're actually supposed to focus on just certain things, but one of those things is making sure what is going on is not urgent or catching it if it is, and visiting them is entirely appropriate. Just be ready for them to be quick to refer to primary or cardio either way... that's their legitimate focus, but don't take it as a slight.

I am male. I have Pavlovian responses on a minute to minute basis. How does a momentary whiff of a perfume an ex girlfriend used to wear result in autonomic responses such as increased salivation, increased heart & respiratory rates, piloerection (that's goosebumps, folks), cognitive distraction, et. al.??? I think the trainer guy here is overstating things, but that isn't uncommon when people are offering a full regime and using "motivational attitude". It is the operative construct of any "therapy". Details don't even have to be entirely accurate, and also things don't necessarily have an inherent condescension. You can actually get POTS from simple deconditioning and a spiral of results... even being horizontal too long lowers aldosterone (cascading to hypovolemia)... putting road blocks up to recovery. So it seems the advertised approach could well be successful for a subset of folks. Any promises in this regard are overstatement or simplification or just erroneous, but it isn't the worst thing ever. If you don't like the regime, just say no. As a consumer, you can shop around in one way or another. Even when there are specific damages (neuropathy or other damage) one can try to make use of whatever adaptation the body is able to muster. Maximizing whatever compensations are available seems wise. Even embracing a flawed or incomplete context can be useful... even relaxing... since reality and uncertainty wear one out.

Some folks have luck by avoiding any major spikes over some personal maximum. An approach like "interval training" might allow someone to violate that and get conditioning response from the body... or it might totally backfire... I wouldn't know. I personally have a pretty variable response to different techniques, as though it's more important what state my body is in leading up to exercise than what it experiences during. It is a good sign that your HR is "modest" within your range despite your powerwalking! That might indicate that a healthy exercise adaptation is working to some extent. In other words, the ideal "athlete heart" doesn't tolerate extremes of HR, instead the body adapts and achieves improved performance within the a prior mellow range. Expected adaptation: a) slide downward of entire HR scale, including into benign bradycardia range; widening of pulse pressure (difference between systolic & diastolic BP's) implying greater stroke volume. When due to a healthy response, these describe a "more efficient heart" rather than one that is struggling to keep up by simply beating faster. Both a & b are highly desirable goals for someone with POTS or similar, and you can see how the other extreme (deconditioning) can lead to POTS itself (such as bedridden or immobile folks). I don't know how to take it to the next step. I think it can just be trial & error. Maybe throwing in brief (minute or two) stretches of pace increase amid your normal powerwalk pace. I do this with uphill sections, which are very intense by nature but can still be taken slowly as needed. If you've got an exercise oriented HR monitor you could try giving brief spurts of an extra 10 or 20 bpm amid your current baseline workout. In normal folks, these intervals can sometimes give benefit on par with extended sprints without the added work/stress of extended high HR activity. I wouldn't know if this works within dysautonomics but it seems like a decent step in lieu of adding an extended extra-intense session. To be safest in determining a max HR, I suppose a cardiac stress test and/or ambulatory ECG is best. When pushing into tachycardia, one is concerned with: a) inducing a bad arrhythmia; getting stuck in a mode where heart futilely increases HR while losing overall efficiency. Quick HR tends to bring narrow pulse pressure and defeats itself or tops out. Ideally, one probably wants a slow strong whoosh with good stroke volume (from good venous return) and just slightly elevated HR. Whether & how we can get to this safely is beyond me! Depending on what you do, it can be wise to recruit cardiologist or at least a solid exercise physiologist with depth to know that you're operating with partly "non-normal" realm. Maybe it is a "cardiac super-rehab" thing and could be approached as an "advanced student" of a cardiac rehab program/facility???

2+ times a day if dating. Reciprocal of that if not. Usually not. (And a $10 haircut every few months if not dating

I get an intense head tingling (loosely akin to a "chill" effect) after pushing exercise hard for several minutes (and especially when I slow down after doing so). I imagine it could come from various things, but I believe it is a known part of "sympathetic" response... specifically the later more intense phases. I'm assuming it has to do with the various (sometimes opposed) signals intended to redirect blood flow. Seems like they reach a certain threshold and the little vessels & arterioles respond throughout the scalp... or perhaps something "pushes back" against the sympathetic stimulation and overcomes it suddenly. Hard to say. I've not taken midodrine, but wouldn't be surprised if it's side-effect sensation is similar since it is an "alpha adrenergic agonist" and might set the stage for that response. Overall, I believe it is a "normal body response" and haven't heard of it doing any harm, just discomfort (from mild to severe). Of course, with a dysautonomia we are often triggering these normal responses at less than normal times or to inappropriate extremes... so in that sense it is quite abnormal and disruptive! Perhaps it is consistent with "standing up being akin to exercise" and also "excess sympathetic stimulation" that is characteristic of POTS. I don't usually get it from just standing, however if I stand up (and stay still) I will go through an escalation of sympathetic nervous system symptoms. Once or twice I have gotten to the tingly scalp sensation if pushing it. Sounds like you might get to that point quicker... or perhaps you are actually less prone to other symptoms (such as fainting) and you get this symptom more prominently since you're able to stand thru the symptoms longer than some other folks. Maybe those vessels are just "calibrated" to respond a little differently/earlier by other means... like how some seem to "pool" in different locations but are otherwise similar. Basically, I think it can be part of "just POTS", but I wouldn't know if there are other concerns about it.

True. Need the old school manual cuff (or a hacked electronic one) and a high tolerance for pain/discomfort. But priorities and pain tolerance change when in an urgent care situation! The manual ones are pretty cheap. I had one first, but didn't have the patience to deal with it so gave it away (if I hadn't I might have spotted my POTS earlier). While they're at it they can also look for muscle twitching/cramping in the starved area... as an indirect sign of potentially low Mg levels.

Wishing her a most speedy recovery.

Yeah, I was thinking I should get a medical alert bracelet too. Best to state precisely which useless organs to constrict and which to preserve.

Reportedly, it results in less neuronal norepinephrine release (by activating one of the negative feedback loops involved in neural "modulation"). So it is presumed to help in a condition characterized by excess sympathetic stimulation, by blunting the release of the primary sympathetic neurotransmitter. It "tones down" sympathetic activity at a rather early/central point in the chain of events... earlier than something like a beta-blocker which tends to be impeding a step later down the line.

I tend to have my BP cuff on or at hand often enough, so I'll be prepared in case something comes up. I'm tempted to make further comment (a number of jokes come to mind), but am opting for better judgment

If I recall correctly, histamines are credited with being vasodilators. Blocking them seems to imply resultant tendency toward constriction. But I'd tend to think the doc was presuming a Zyrtec with the "nasal decongestant" ingredient (pseudoeffedrine or phenylephrine) component as others have mentioned. I personally get a positive response to these... just like one can get a mixed positive/negative from caffeine, etc. There seem to by 20+ influences on the poor little venous sliders/muscles... I'm amazed they ever figure out the "right thing to do" at any moment with all the conflicting signals they get!

Magnesium makes my stool beyond soft. That is a common side-effect I guess. Maybe worth investigating. I'd hate to suggest something that backfires and makes you feel worse, and it seems it could if your digestion is sensitive... but I mention it because it certainly helps stuff get through yet doesn't feel like a regular "laxative" to me. (Coincidentally, Mg is a credited with migraine prevention for some folks) Zofran is said to tone down the vagus. Might be other meds credited with this too, I can't recall right now. Seems many other meds would implicitly tone things down in general as well (perhaps things in the topiramate, carbamazapine, valproate world, which also serve as migraine prophylaxis for some). I don't know precisely what that it means to lessen vagal tone. Seems that implies a simultaneous inhibition of sympathetic, parasympathetic, and some sensing nerves? I don't think researchers know if signals themselves are miscalibrated, if the parts of the brain responding to them are off, or what... so perhaps best to consider specific symptoms/locations that one might ideally target. Targeting the "whole vagus" might be appropriate or might not... I wouldn't know. Not sure if Zofran or similar has been used in Vasovagal circumstance or not???

It's definitely a plus for a condition to have at least some physical signs for a doc to latch on to. But then it seems it can backfire too, since then they might make false assumption that those are the full extent of the condition. Certainly not the case. Not sure what can get around that if a doc just isn't getting it. After some patience and simple explanation of that fact, if a doc isn't coming around it may come down to moving on to another (or adding a different one such as a different specialist if one is getting some benefit from the original). Here're some of my opinions, for what they're worth: Taking a full few months off caffeine was very wise (and dove tails with frequent-small-meal's metabolic management). I've done the same myself (repeatedly). Probably a couple months of abstinence is enough to get a solid feel for how it is/was working for you overall. If you're like me, it's a mixed plus/minus drug (like most, eh) but wise intermittent & moderate use can bring overall benefit. This isn't likely beyond what you've already thought or done, but perhaps emphasize the "wise & moderate" or even "intermittent use" and acknowledge it's "mixed" nature to the doc. You can point out that you're appreciative of his abstinence advice, acknowledge that it is the general starting recommendation, but point out that dysautonomia experts do acknowledge that some patients find caffeine to benefit overall nonetheless. You are simply one of those patients. Perhaps consider/offer to abstain & reassess occasionally in the more distant future since the body & other treatments can change over time (remind him that you are being reasonable, and implicitly invite him to be so as well). Perhaps mention that caffeine is not unlike other drugs used to treat dysautonomias such as midodrine, which despite being mildly "stimulating" can sometimes end up "paradoxically" avoiding the body's over-stimulation (which is worse). Or just keep it short & sweat: Politely ask if he can recommend a better alternative than caffeine for addressing your persisting symptoms (and make simple mention of those, and repeat your thanks for the improvement in others). Put the ball gently in his court.

Hoping they can get to the bottom of it quickly and get you some relief & improvement. Sometimes things get worse before they get better. You're long over due for some good luck. Let's hope someone can turn it around and help for real, ASAP.

So far as I know, it is a potential POTS symptom, but not sure its on the typical lists of such. It is definitely a classic CFS symptom. I get it too, though thankfully it isn't constant and it varies in intensity (sometimes bad but usually less for me). For me it can be very brief or last a week at a time (hard to distinguish from actually being sick). I figure a lot of the times I thought I was "half-sick" in the past, it was actually this symptom. I characterize myself as having a CFSy POTS in general, but symptoms migrate and vary a little (seems to be a trait of autonomic troubles). There's always the chance that your getting sick or that something more specific is happening like triggering of an immune response or whatever... but I wouldn't know how to distinguish. Probably good to document these things as best you can, generally look for any patterns, keep a doc informed in the hopes of pinning things down if possible or in case it's something else besides "just POTS".

Best to have docs scope it out fully to figure out what might be going on and what to do. I can say that I've had brief experiences loosely similar to that. But for me it's a pulsing wave thing in my vision which at its worst (very rarely) has diminished vision in one eye. But what I'm talking about is a more commonly described thing (and can even happen to regular folk that get dehydrated/hypoxic). But it's loosely similar and has been more noticeable for me in night vision (making an area or eye seem blind briefly) so I mention it, even though you would have noticed a pulsing if your case was identical to mine. The best I can describe my "moments of slight night blindness" is that it is somewhat similar to the blindness one gets after intense light exposure... except lacking any such exposure. Like a miscalibrated sensor/transmission or the "calibration" is responding to out-of-whack pressure/oxygen/nutrients supply to something for the vision (retina, nerves, optic cognition). As similar stuff is presumably happening intermittently in less "obvious" areas, this seems like it relates to other weird dysautonomia things and perhaps cognitive challenges too. For me, I chalk it up to generic "blood/nutrient supply anomalies" (a very broad meaningless brush) and almost a migraine like thing (except I've never had migraine pain... just regular headache at worst... but definitely things that could be migraine/seizure aura stuff). I could imagine something similar might happen for you... or of course it could be totally different! Hard to say, but I can partly relate at least I can't think of anything in the way of advice other than pursuing it with docs as best you can, and of course keeping as much of your body/life within managed margins (consistent hydration/electrolytes, nutrition, steady meds, whatever) to see if that helps avoid episodes. I get my "pulsing stuff" at times I wouldn't expect, such as when otherwise rested, fed & relaxing for sleep... so it's not simple cases of exhaustion/dehydration... more of a "dysregulation" thing. I don't know all the possibilities but seems it could be anything from "just dysautonomia" to painless-migraine/absence-seizure to some serious optic nerve thing... I wouldn't know.

I know little of plasmapheresis. Just read a bit online and it seems a reasonable thing to consider for most any autoimmune condition (obviously since that's what it targets . Nice that it can potentially allow lesser dosage to whatever drug therapy one is on. I guess there are risks, like with anything. Some seem minor, a couple are more serious. Not sure how those weigh out. That's always the hard part, of course! I've had little or no testing to determine POTS cause. None after diagnosis (pretty recent) and just a couple spot checks for obvious hormone imbalance (thyroid/adrenal) prior. Some day will get more detailed/costly stuff. So far, just trialing meds to see what seems to help symptomatically. If a progressive underlying cause is behind it, obviously I'd love to catch ASAP and I would likely take action even with some risk (my personal leaning, especially lacking family/dependents, etc.) Been pretty low functioning lately so I've had little to add on most topics and have not been able to read thru much information of late, or formulate anything useful in response.

This study found an interesting thing. Note the subtitle: "Less is more" referring to the lower dose giving better results for most. I assume folks still need to experiment with a doc & find their personal working dose (and this will also vary depending on the goal such as migraine prevention), but don't be surprised if a low dose does the trick for POTS. Also 5mg sounds tiny compared to the high dose used for lowering BP, but not so crazy compared to 20mg in POTS and with a personal sensitivity. Propranolol Decreases Tachycardia and Improves Symptoms in the Postural Tachycardia Syndrome (Less is more) Circulation. 2009;120:725-734 http://circ.ahajournals.org/cgi/content/abstract/120/9/725 Also, if you can't work around a negative response there is always the chance of different BB's being used, especially one that is cardioselective so it doesn't have CNS effects.