erik

It is indeed hard to explain a "work allergy" to people Unfortunately, it can be a reality, not an excuse. Also, it's tough to explain when one suffers chronic fatigue but still has some ability (episodic or specific sorts of activity). People get suspicious! Can't really blame them, but it's frustrating.

It's a big mystery world, but some basic principles are out there... and I love speculating! I do know that psych meds are known for causing orthostatic intolerance (mostly the neuroleptics & SSRI's). That's a documented side effect (one of the ironies of autonomic probs is that SSRI's can often help despite this fact). I've usually assumed this meant a side effect just while taking them... hadn't heard anything definitive about long term effects, but long term effects are generally not known! Boosting a particular neurotransmitter usually prompts various parts of the body to reduce their number of receptors... in other words, they down-regulate in response to overstimulation... usually this response is transient but one never knows (recovery time can vary and itself be regulated by known or unknown factors). Some things can be permanent, but usually not, and this response is observed everywhere from the kidney's to parts of the brain. Stuff like fluoxetine also changes the RNA expression in key areas... so it isn't mutating your DNA but it's changing the way some of your traits are expressed... like a pseudo-mutation. One semi-demonstrated area is CAMP or BDNF. This is a mystery world since these things are so difficult to measure, and there are so many of them. Even things like some antibiotics end up having effect on nerve regeneration... some are neuroprotective! The only rule is that "science" only has crude insight to the total picture, or key specific knowledge that doesn't always lend itself to an overview. This study is confusing but seems to be indicating that serotonin increases DNA synthesis but fluoxetine inhibits that??? So hard to tell since the abstract is trying to be brief and is well over my head. But one can at least see that there is direct relation of some sort between serotonin and related selective agonists and antoginsts with things like vascular response (and that's just an example of direct effect... there would be plenty of indirect "regulatory" routes to influence such things). http://ajplung.physiology.org/cgi/content/...ract/266/2/L178 Also, many meds and most psych meds modulate activity of key liver enzymes... Some inhibit them, some promote them, some do both and "balance" them (SSRI's tend do that). The chronic effect of this is probably not studied or of great concern to many, but it's fascinating to ponder. This is actually one of the ways they might help people because those key liver enzymes are not simply involved in drug metabolism... they have crossover with food metabolism as well as fundamental body activities such as key glucocorticoid regulation or other hormonal things. Increased or decreased or stabilized activity of such fundamental enzymatic processes can be complicit in therapeutic effects, side-effects, sensitivities, etc. It is most documented in drug interactions... since that is of great pharmacological concern and something that can be definitively addressed... I wonder about the more general aspects of this. Any, I'm just doing the equivalent of "name dropping" here! I don't have deep knowledge of these things... just enough here and there to make crude but fascinating observations... nothing especially useful, just "fun" or brainstorming sort of thing. At the end of all that... it could just as well have been a different condition emerging on it's own, perhaps even having been masked by the prior meds (accidental treatment), or perhaps totally unrelated. It's all speculation but there are plenty of possibilities. Large population studies would usually be used to try to suss out general trends from the individual variations.

Studies like this implicate the region directly in "pressor" response... which many of us lack (therefore having POTS symptoms): http://ajpheart.physiology.org/cgi/content...act/276/5/H1409 Of course those with known peripheral denervation have a reason already and on needn't hunt down other causes... but it's just another link in the chain that can break. That area of the brain can be damaged by physical injury, toxin, (perhaps infection), etc. Damage may or may not be visible as lesions... and lesions don't necessarily mean malfunction so nothing is ever that definitive, but it's fascinating to ponder. For those of us with known damage to the area (or events like head injury that greatly increase the odds of this)... it seems worth investigating to me. Not sure if docs will buy it... I'm still slow and cautious with what I press doctors in hunting down for me.

Hypopituitarisms are said to come in all shapes & sizes. One can have partial or full deficiency of one or many of the master hormones (or one can have little tumors that produce too much but that's something else). Also, the hypothalmus ties in and other regions (where the "sensing" seems to be done) can have major or minor trouble... which is like having a broken thermostat (or thirstostat . Or the stuff that receives those signals and "figures out" how to respond can be goofed... a more "central" problem and less "glandular". There are some "flavors" of panhypopituitarism that present symptoms totally identical to POTS. Depending on what they find, you might eventually be leaving our "club" technically, even if you have identical symptom cluster. Subtle pituitary probs are cyclicial/episodic... particularly "stress dependent"... like secondary addisons and whatnot. Once one pituitary problem is identified I sure hope they give you "the works"... there are 7+ master hormones and related "sensors" and each can be goofed mildly. Some tests even look normal, but then a doc can look extra closely or in a different way and see a "mis-timed" response to some provocative tests, ACTH stimulation and whatnot. On the "fascinating" side... vasopressin (antidiuretic hormone) also influences memory formation! So strange that the water retention hormone ties in with that. Some people experimentally used it as a "study aid". Just a weird tidbit. Anyway, best of luck to you and your "subfornical organ"! I always thought that was a funny and misleading name!

As for grieving that is a very adept description. I don't know how seriously it is taken within the world of illness effects, I get the feeling that ball is dropped during treatment. It is a real issue. If one wished to face this head on, with counseling and such, one may have to "borrow" treatment concepts from areas of "abuse" (psychological, sexual, etc.) where as near as I can tell the key principle is to eventually face/experience the pain directly and fully. It is described as a grieving process (though in essence you are grieving for yourself, not another... or as I think of it, for another version of yourself). It is something that seems futile, but the reasoning (and there is evidence of this) is that not doing so can be a temporary benefit/adaptation but a long term problem... so one is wise to at least eventually confront that issue head on. Perhaps a creative counselor can adapt some "trauma" treatments to the situation and be of assistance. I know for diseases such as cancer, this aspect of illness has gained favor. Counseling for chronic illness may or may not really tackle this head on. In essence, that is what one is dealing with although it lacks the "flair" of more overt traumas. It would be nice if some general advice about philosophy and attitude could fix things... those are *always* good to contemplate and apply, attitude is key... however, this stuff runs very deep and the sadness is very real and serious. For me, I can talk about myself in very unfeeling terms... then if I imagine some of my circumstances happening to someone else, even briefly or shallowly, I will suddenly cry. So there is something weird there... one must guard oneself to remain function but it builds a "dissociation" that is not healthy overall (a separation of self). Might read up on dissociative disorders... the milder ones, not the multiple personality stuff My personal advice is to address the pain at least partially on those terms, and mostly with a good healthy attitude and if you can, some personal and religious fortitude. You are actually early in the process and will benefit and recover in this sense quite well.

Dang. I've had lower back pain for long time (worse after rest) and lately have a specific vertebrae that hurt to touch... though I'm not jumping to a conclusion I'm thinking the ankylosing spondylitis is matching a little too well. I have a weird new butt pain too... I've had hemorrhoids as well as pilonidal cyst/infection (and excision surgery) so I know exactly what those feel like... and this new pain is different. Wonder if it's all related. Does the ankylosing thing, if it's auto-immune, also tie in with systemic auto-immune things... like other systemic things that can cause/exaccerbate POTS provoking damage? Or perhaps I've got a cancer thing going on and taking the steroids caused it to accelerate?

My eyes have been red for quite some time now. It happened to start while taking fludrocortisone when they got quite red everywhere about a month in. It subsided after that and is now more subtle and extends horizontally having no red in upper or lower parts of the eyes. At worst there are splotches at times, but mostly it is mild streaks. It is enough that I always see it and others see it too when its on the upswing. No other meds involved and the fludro was stopped months ago now. I do high salt/water diet consistently, though. My general BP isn't crazy just 120-140 systolic range on average (ignoring orthostatic dips). Eyes are very mildly irritated feeling too, but nothing super bad, just enough that I notice it. They still make some tears and aren't totally dry or anything... though maybe they are tearing less (hard to tell). My eyes will get super red from swimming so there is a sensitivity perhaps but this has been persistent mild red/irritation not timed with water or sun exposure (which has been really minimal for months). No known allergies in the past. I've taken Claritin D, Zyrtec D, benadryl, stuff with phenylephrine, and some similar OTC allergy related stuff none of which have affected it. Regular eye drops don't change it, but haven't tried anything special directly in the eye yet. I am considering that new Claritin Eye drop product... anybody tried that yet? Any tips on a good eye allergy drop to try? I don't have much experience with allergies so I'm pretty ignorant! If it were allergies would the general (oral) allergy meds have been expected to help it or am I mistaken in that regard? Do you all ever get red eyes as part of a POTS flair-up? Could this be early Sj?gren's Syndrome or something like that???

To my knowledge, you're quite right... the direct pulmonary hypertension test is very invasive. For me if the sleep study turned up apnea it would be like finding a *potential* cause, since that in rare cases can relate to PH... but wouldn't be anything conclusive. My incident seemed like a confluence of things that happened to come together at that moment and make a little rupture in the lung... like heart beating too fast & hard while the lungs were filled and pushing back and maybe some vascular & airway constriction weirdness as we tend to get with POTS... ironically it was when my "asthma" started so something was going on. I think I have seen the chest tightness/pain on POTS symptoms lists, but it doesn't necessarily mean one should "write it off" as inevitable. Subtle heart things feed in to lung symptoms (since the heart so directly pumps in to them) so that's always worth considering. The fact that pressing on the area gives some relief is perhaps a helpful clue to someone with some good anatomy and diagnostic experience (I'm just an amateur guesser Definitely mention that to a diagnostician of some sort! I almost wonder if a combo "cardio stress test" and "provocative asthma test" could be done! Since you can provoke it (at least for the time being)... maybe a holter monitor with a little exercise? (just to be sure it's not a subtle arrhythmia) I used to feel better wearing a "kidney belt" (or something designed for back support that holds everything solid). That could come in handy perhaps. Also, as in my case, "exercise induced asthma" is a decent match to symptoms and "tightness" can substitute for actual "cough"... even if that's not what is really going on. I think it's a "pressure balance" thing... lungs are quite sensitive to all that! I've busted a few ribs and partially collapsed a lung so I do know that! Ironically, it didn't hurt so much but was more of a "discomfort"... when stuff interrupts your basic life functions it is horrible! I guess that's obvious, but I think people not used to autonomic variations (even non fatal ones) just don't grasp that... even doctors.

From your symptoms I can certainly see why that cardio suspected "some kind" of autonomic disorder! In a way, they are doing a favor by making the "stretch" to POTS. Have fludrocortisone or some of the other meds or lifestyle techniques ever made a big difference for you beyond beta-blockers? "Diagnostic treatments" or trying a med in order to get clues about a condition might be merited. Have they done any "fun" stuff like lumbar puncture? Especially where they measure the "escape pressure" or whatever... in addition to looking for spinal fluid content abnormalities? Others here have experience with that, but I think I heard that such pressure problems can even have side-impact on autonomic regulation (and over or underpressure there can certainly explain bad head pain). One tidbit I read states that elevated eye pressure will slow your heart! The autonomic system is pretty wacky sometimes in the way it ties together things that don't seem related, even in a normal healthy body

Haven't had chance to rule it out but pulmonary hypertension has been in the back of my mind... I've been approved for sleep study and will get to it eventually (one very rare side effect of apnea can be pulmonary hypertension and apnea could explain a lot of my fatigue and other stuff... but so can POTS). Direct pulmonary pressure measure is pretty invasive so my doc & I have been waiting to see if I cough blood again (or if I just croak next time which makes things convenient If it happens again, some immediate imaging and angio stuff will be merited and could catch something. Do you get a cough thing simultaneous with heart feelings (like flutter or pressure or tachy)? One of my phases is like that... and the other phase is very much like you describe with the shortness of breath. I'll also be short of breath and cough mid-sentence, more than gasp mid-sentence. But my coughs are virtually never "productive" (no phlegm)... although there are variants of asthma that are "dry". Like you, I don't think this is really "asthma" either... except in a *generic* sense as an "airway constriction" or whatever. Your description sure sounds like a locational and seasonal allergy sort of thing on the surface, from the timing (though of course, heat/pressure/etc. could be involved instead). Seems like many POTS folks get hypersensitivities to stuff, either with or after their POTS... maybe even like a transient auto-immune flair up if your POTS is from auto-immune process... or I guess that's what an "allergy" is anyway! One last thing, I will also tend to get my cough immediately upon standing... not all the time, just during my "cough sensitive phases"... did anything like that happen? Makes me think of "pressure problems" like the pulmonary hypertension (but a low grade version)... or even "hyper-reactive vasoconstriction" like what can happen to people with sudden low brain blood flow causing syncope (even without total body BP/HR drop). I can't escape the fact that much of POTS relates to "constriction" in vascular system (lungs have vascular + air constriction processes going on... and malfunction of that is "asthma").

I just read a bit on "IC" and some of the research directions. There are more than a few coincidences between IC and things like POTS... and some "theoretical" ways they might interact or overlap (plus I happen to have some minor bladder pains and definitely have periodic "dumping" episodes). But in research one thing is that the Kinin-Kallikrein System has suspected involvement in IC... it is different but very similar to histamine effects (like mast cell response and such)... there is some limited interaction between this "KKS" and the Renin-Angiotensin-Aldosterone System (specifically in kidney feedback loops)... and Bradykinin happens to be a potent vasodilator agent (one of the things that tends to "goes wrong" in POTS and such)... and the KKS is responsible for effects in the blood pressure & electrolyte regulation as well as inflammation. For example: http://clinicaltrials.gov/ct2/show/NCT00155064 Obviously I'm just drawing thin threads between these general concepts, but I've searched a bit and haven't bumped in to any studies looking at stuff like this as it relates to POTS or other autonomic problems. Anybody happen to have heard of such studies, theories, research on the KKS or bradykinin and friends? ...or perhaps investigational use of drugs like Ecallantide, Icatibant, Cinryze, C1-INH or other stuff usually only associated with angioedema?

Yeah, bloat and itch sometimes especially after a meal (abdominal itching is most common for me with exercise)... on occasion pulse gets visible and pressured in that area. Might be worse from staying overhydrated but kinda have to do that to help stabilize BP. It's a little like "ascites" which happens to be known for "shortness of breath as well as wheezing and exercise intolerance". It makes crude sense to me that being overhydrated and having some underlying vascular abnormalities would make one prone to some extra leakage along with the basic extra "flow" involved after a meal.

Apologies for running on... just wanted to add that I get "cycling" or periodic "come and go" with most of my symptoms, including periods of days/weeks when I am generally "short of breath". This can even mean I'll get a "drowning" feeling just from holding breath for a few minutes. Like the "CO2" sensor is really touchy during those times (remember breathing impulse is mostly driven by CO2 levels, not O2 levels). Those are distinguishable from the "asthmaish" periods... though they both involve some breathing stuff.

Oh yeah, I think Julie is referring to the simple test of deficient lung capacity/function where you just blow into a Spirometer. That's all I had and I was "lucky" enough to "blow a bad number" that day. ...vs. a provocative test, probably the methacholine challenge (though maybe there are a few others) where they induce asthma with a drug then relieve it. If you are "asthma prone" but don't happen to be very symptomatic all the time (as in conveniently for a test) this can be used. Overall, one should consider semi-provocative heart exams too... like stress tests, heart measure during valsalva, laying on side, with various drugs and whatnot though I've not gotten that far yet.

I had similar symptoms, had mildly deficient "lung function test" with the doc & diagnosed with "adult-onset exercise-induced asthmaish thing". I've only had "serious" chest/heart/lung pain once or twice of mysterious origin (though I did cough blood once and still don't know why). Heart/chest will hurt when BP crashes and the heart struggles (if I'm in an orthostatic hypertension phase which comes & goes). I do have weird "heart skip or spasm" that brings an immediate temporary cough, like the lungs get over/under pressured briefly... but that's different than the "asthmaish thing" which is a non-productive and "episodic" cough that lasts 5 to 15 minutes typically and is generally associated with exertion but not always. A simple albuterol inhaler seems to offset some of the shortness of breath and for a while I would use this prior to exertion and even just regularly for a while to see if it helped. I guess it did... and I was lucky not to have any side effect (most people don't but some do). Also keep in mind that beta-blockers are notorious for exacerbating that sort of thing (though I'm not on them personally). People with asthma/allergies + dysautonomia get cornered in terms of treatment options... however, whats going on isn't necessarily just "regular old asthma".

Oh yeah... nutritional deficits? Neuro-syphilis??? Medicinal side effects or lingering effects? Are there any obscure clues in a family history? Things to push toward autonomic stuff... things to push toward heart probs (like unexplained sudden deaths of relatives... various other things).

A temporary increase in pulse upon standing is normal (more than 30bpm is not typical but is "allowed" if temporary). It is one of the immediate responses to compensate for the sudden drop in BP that would otherwise happen even in normal folks. When the HR increase is sustained for several minutes, that is evidence that something somewhere is wrong, failing, malfunctioning and this fits the definition of POTS most solidly (provided it has associated symptoms, lasts for at least several months and doesn't have an otherwise known disease or simple cause)... although docs even differ on these criteria. As far as I know, Janey's response still very much fits the POTS HR-increase because even though there is a drop after a while, she stays higher than the 30bpm above rest rate (plus the huge increase off the bat is fishy). I had never heard of a doc making a "clinical call" of POTS like the cardio did for you valliali (not like I'm an expert or anything, of course). Are any of the treatments working? It's always possible for docs to make mistakes, for you body to be weird on the day of an exam, for an illness to be elusive. Sometimes the more rare things might be worth screening for... mitochondrial disorders, whatever else. These syndromes have "nonspecific" signs & symptoms so there is a huge set of things to consider if one were to make a truly exhaustive search (and there can be a couple things involved... on incredibly rare cases, one disease can actually "help" another one and serve to cover it up!). To my knowledge, every medical test has potential for "false negatives". Everyone is prone to error. Our bodies fluctuate constantly. It seems inevitable that you repeat some things and make sure various possibilities have been "screened for". Did an endocrinologist to thorough testing... like for pheochromocytoma? Were cardio stress tests involved (maybe repeated)? Is there a chance of mitochondrial disease emerging? Did they look for anti-bodies of various things... either autoimmune stuff or more standard infectious agents like epstein-barr or whatever? Have some MRI & CT's been done and blood tests to screen for even rarer hormone-secreting things than pheo? Unfortunately, I'm sure the list goes on and on! Are there other dysautonomias that might fit... or might you be a new breed or have an "offseting" trait or condition that makes your "medical presentation" unusual? I've only got questions and no answers... except just to say not to be bashful about retaking tests, doubting doctors judgments, etc. It doesn't even have to mean they made a mistake... stuff just happens that way sometimes.

I just had an orthostatic hypotension event this AM and it fits those descriptions pretty well (as my BP dove from 140 to 60) as I tried to stand beyond 5 minutes or so. Body panics and floods with "nonselective" triggers (neural & hormonal) that try to address the problem but cause side (and central) effects too. A "hypoglycemic event" hits like that as well, although I personally get "seizure-like" things from sugar crashes and volatile mood. This AM, my blood sugar went higher after the event, despite being in overnight "fast"... that's something "stress hormones" tend to trigger amongst other things. When the graceful management of the body's basics are not keeping up, the crude "sledgehammer" responses come in to play. They try to whack the problem but hit the rest of our bodies too. I wasn't dehydrated and not too much else has changed (but I'm adjusting diet), though I might be paying the price for recent exercise. These things often just hit unexpectedly too... for me, they are more "episodic" rather than constant since so much ingrained behavior built up over the years is tailored to "avoidance" of this stuff (I have only learned of POTS recently).

Work ahead! Underschedule and get out in front of the curve so if (when) setbacks come they don't derail progress and can be accommodated. This might even be something a prof can assist with depending on how much of the course is public and up front, defined in a syllabus, etc.... vs. how much is not (but even if not, one can often work ahead unless the course is very scattered & undefined). Something that you might not consider truly necessary, like a tutor or other assistance, can be used to lighten stress even if you normally don't need help digesting information. Simple things like meal plans that one might not normally use can be boring but potentially helpful overall.

Sure. I've had panic-attack that wasn't panic attack... a.k.a. not psychosomatic. Directly related to standing still. Don't know if I'm hyperadrenergic sort. Ironically, on the other hand, I've witnessed a murder and have had death threats made against me (unrelated incidents) and had no panic reaction whatsoever... so I'm on the psychosomatic "dumb & numb'er" side of that scale Yet just this AM, couldn't stand for more than 5 minutes before "panic" hit... during one of my very frequent supine to standing pulse/BP self measurements. Plus yesterday, had a very rare incident... an extended high BP episode. Mild "panic" but some headache and such that made me grab my BP meter... it was one of the rare times my pulse did not go up upon standing, probably because my BP was 160+ supine/standing/whatever. Lasted 30-60 mins then passed. Keep in mind, I call it "panic" but it is internal. There is no outward sign except I will "withdraw" from any activity and calmly hunt for a way or excuse to sit or lay down (no matter where I am). I might turn (extra) pale... maybe flush too at times though that tends to be in legs when it happens. Did it on the job once right in front of the boss when we were upright slowly touring a business... plopped down on the floor and pretended to be writing something, just so my mind and body could "calm" down... though I had no outward agitation or sign other than awkward "withdrawal" from the conversation. Would not have looked like panic, but internally it was.

Awesome! It can never hurt to know someone.Hmm... I don't suppose their last name was Obama?

This device is cheap it estimates fat via electrical measure through arms rather than the legs (like the weight scales would). Pooling in legs might be less of a factor on this one. Perhaps some interesting stuff would happen if one measured with both on a regular basis Omron HBF-306C Fat Loss Monitor

Yeah. Autumn was an amazing season for me when I lived the midwest... I didn't know why but I felt like a new person then. Winter was decent too, except to go inside where people have the heat turned up so much and then I'm instantly slow as molasses (mentally & physically). I saw a show on one of the "science channels" (not discovery... maybe natgeo???) about a "cold hand" device that some researcher was developing. It chills the hand, but not so much that it triggers the "cold pressor" effect. The idea is to help cool "core temperature" especially during exercise... for normal people it makes a difference in exercise stamina and recovery. Something like that might really help us "heat intolerant" / "exercise intolerant" folks keep more active.

Are you trying "blood volume increasing" treatments in addition to the Midodrine? ...like fludrocortisone or at least lots of extra salt in diet? Those are appropriate for POTS with Orthostatic Hypotension... or even just OH by itself. They can take longer to notice benefit from.

I happen to have virtually the identical question that you have! "Does the pulse increase upon standing come and go with POTS or is it always there?" Sounds like others are indicating that it can come and go with POTS. For me, there have only been two times that I have NOT measured this increase upon standing since first finding it some time ago (I measure very often). Like you, my general symptoms do persist though super-hydration has helped some. Did you or the docs measure an increase in pulse upon standing at some other time? My primary care doc did an "orthostatic intolerance" test which is basically the "poor mans tilt" that yogini mentions (except regular docs tend to focus on BP drop rather than HR increase... but should note both). It sounds like you are describing a doctor making a "clinical call" of POTS... which is kind of unusual to my (limited) knowledge. Have particular treatments had any good effect on your symptoms? That can be a clue as to how valid a "diagnosis" is (although since peoples responses vary there's not any clear "rule" to this "deductive" approach). I am personally "hung up" on the fact that a POTS expert steered you toward an arrhythmia as potential/likely source of your episode... I would say (ideally) you need to go back to a (different) cardio for a "full workup" with that information especially noted (and of course ALL your health records available). I do not know the details of how they "hunt for" PSVT or similar (like atrial flutter and whatnot) but I am concerned that they didn't exhaust that search in your case. Did they at least do a "stress test" and "valsalva and other positional provocations" in your cardio workup? Perhaps a holter monitor for a bit? With some luck... your insurance might cover those more fully than a TTT since they are more "conventional" investigations and appropriate to find/exclude/treat. If nothing else, a "consult" and second opinion of another cardio sounds worth it (perhaps even if that first cardio DID do a "full workup").