cardiactec

i know i think you are right morgan. i think it's just time to call it quits on going for an EP study. if the big shots say no (mayo) than probably shouldnt seek someone else out to go that route. i know it sounds bad, but sometimes i wish i'd just go into a crazy ryhthm JUST SO this situation would have a change of pace - cuz everyone knows with CHANGE comes new perspectives, new ideas, and new therapies/treatment options. i probably shouldnt wish that upon myself, but i guess when you get desperate enough for some relief and some answers, you hope for a different outcome in ways that are deemed or may see somewhat irrational or dangerous.

my SYSTOLIC number BP dropped out 20 points and no one ever diagnosed me with postural hypotension, just pots cuz of the increased HR i had........... doesnt anyone have a clue?

i have had a second opinion. i went out to mayo clinic and while i was there, i saw dr.low for the pots and i insisted to see an EP doc. they allowed me to see a great EP doc there and he told me it was all pots (they did a holter while i was there) and he said although my P waves were bizarre, the morphology of them did not change from a normal sinus rhythm to a sinus tachycardia so...........he said he was hesitant to do an EP study on me because of the known risks of the procedure, and the benefits didnt outweigh the risks of having the procedure. but still, he couldnt definitely tell me, without a shadow of a doubt, if they would or would not find a conduction abnormality on me (they already know via ekg that there is a slowing of right ventricular conduction, i have a partial RBBB, but they dont know if there is another conduction abnormality causing the tachy).......the RBBB would not cause the tachy. has anyone seen grubb? i know a lot of you, not sure exactly who, has mentioned him before. actually my EP doc mentioned him and said i should go see him (but this was before i went out to mayo, now that i have been out there and mayo is supposedly the god of all medicine, nobody thinks i should go anywhere else).......i know grubb is both a neuro and electrophysiolgist? am i wrong about this? seems like he would be a great doc to see..................

hey morgan, thanks for your response. i believe IST and POTS are probably one in the same, for SOME people, for others there have been found more neurologic components such as neuropathies or lyme for the cause of their pots. i truly dont believe in just IST. there must be some underlying issue going on to be causing the tachy in the first place - and usually, if it is a conduction abnormality, it isnt from the sinus node itself (which essentially is what they refer to as IST) but as you said they were thinking possible ATRIAL tachy, which as you know is different than sinus tachy. docs are usually good at picking up on the differences btwn these arrhythmias just by doing vagal maneuvers, carotid massages, valsalva's, med trials while you are in the rhythm you are in, BEFORE going in and doing an invasive EP study on you, as in your case. i'm sorry that you are sicker now than before you went in for an EP study. i have never asked my doc to do an ablation but to simply GO IN AND LOOK at the conduction pathways. a lot can be diagnosed by just LOOKING at things and not necessarily just jumping for the fire gun (ablation). but they wont even do this on me, LOOK that is, because the tachy is posturally driven. funny too cuz my P waves dont look anything like sinus P waves, AT ALL. and the EP doc knows this. but once again, because this is "posturally driven", it's POTS. if i were tachyn out at 180 while supine, i'm sure they would look at the situation differently, but i'm not.......so.........were you tachy while supine too or just upright? i have tried about 10 different types of beta and to no avail. none have helped, selective and non-selective. i am now on a beta that causes big risks for QT prolongation but they had to try me on it to tame my rates and take the chance of the QT prolongation aspect. it's not working to fix the rates though. my rates are still 160's at work. if i am at home sitting on my couch for the rest of my life than yeah, sure, the beta works great. rates are like 90. but what kind of a life is that? i was referencing the patient and how i felt with feeling weak and sweaty, not necessarily feeling like i was having tunnel vision, brain fog, of passing out type feelings. i just felt really hot, sweaty, and weak - not the typical light-headed and passing out sensations people always say they get on this site. i know what you mean though with "forgetting" some of the symptoms you have, because it is almost like an escape mechanism. if you "forget" symptoms, then it's easier to deny the fact that you have them or have to deal with them. perhaps this is what i am doing, not sure, or perhaps they happen (the symptoms described above) are so infrequent, that i forget about them fairly quickly and so i truthfully, in all honestly, forget about them. i know when i'm at work, it is a lot harder physically for me - very fatiguing moreso than anything, and this is why i was trying to get disability (and still am) but i doubt it'll happen since i am proving them that i am capable of at least working part-time. they'll say "well if she can work part-time, she can work full-time". um, YEAH RIGHT! why did your doc disregard POTS with you on your tilt just cuz you didnt pass out but had the surge in HR with upright tilt? cuz a dropped out BP/syncope has nothing to do with a diagnosis of pots. pots is diagnosed when there's a 30 beat increase or more in HR from supine to standing with little to no change in BP. so i'm not sure why he disregarded the POTS diagnoses on you just cuz you didnt "pass out" since that isnt a finding for a pots diagnosis in the first place..

dizzy dame, just caught on to the last part of your email saying : "...I've got to say though, while I know you probably didn't mean anything by it, saying that we're "just brain-fogged" feels dismissive. Almost everyone on this forum has tachycardia when standing, and most of us have other symptoms that are very disabling, including, but not limited to, being brain-fogged." you're right, i definitely didnt mean anything by that and sorry if you took offense. i know you guys have tachy with all the listed above symptoms, i guess what i was trying to say is you guys have tachy WITH brain fog, light-headed, passing out, etc and i simply have TACHY. i dont feel fogged at all, thankfully, and feel sorry that you all (well most of you) do. that must be a horrible feeling and i am sorry you all have to deal with that. i am just saying there's a huge difference btwn someone who is simply tachy at very high rates than with someone who is minimally tachy (rate wise, lets say without beta's tachy at 120-130) who is brain fogged and has a list of other symptoms to boot. perhaps the compensation with the higher rates helps to minimize all those symptoms you guys have and that is why i dont get what you guys get, cuz my rates are higher and compensating more? who knows what the difference is, i dont have a clue. but i know it distinguishes me from the rest, maybe not all, but the majority. this is just what i feel by observing the different polls and subject starters on this forum. yeah sometimes i feel woozy but that is a rare occasion. seems like you guys deal with this on a constant basis. i dont. and the times i may feel the slightest of what you guys feel, probably is because my rates are 200 even on all the beta i'm taking. i think there is like one other person who marked off having a heart rate as high as mine on a poll. anyway, sorry if you took offense. i didnt mean it the way it came out. i totally sympathize with you and everyone else on this forum. we are all looking for answers, help, and hope. and any way i can try to offer any of those to you (answers, help, hope) , i will do my best.

persephone, oh believe me, i think you are SOOOOOOOOOOOOOO right on this. inappropriate sinus tach. i have said this to my cardio for about three years and he keeps telling me that because the rates are POSTURALLY driven (that when i'm lying down my rates arent 170's-200's only that when standing) it is POTS. he also said that there is some overlap btwn the two which is kind of redundant to say since POTS is essentially an INAPPROPRIATE SINUS TACHY to an appropriate state (standing). it's all in the etiology. they just call people IST if they have ruled out all other contributing factors that could cause the tachyin including POTS (a posturally neurologic contributing factor). wheether or not they really see a substantial intrinsic sinus node abnormality in these IST patients is questionable - my EP doc just told me of a patient he diagnosed with IST over pots, cuz from supine to standing her rate didnt change much, but then she just simply walked down the hall and her rates jumped from normal to like 160's. i personally just think that could either be a delayed form of POTS (she was upright, walking, etc) or that there is no difference whatsoever btwn pots and IST. who knows...........he said because when i go from supine to standing and immediately the HR's go crazy, that this distinguishes me from her IST.

thanks dizzydame, i'll check into that. i know they have run some sort of testing for pooling isses with me (they tied a HUGE cuff around one of my legs (the calf, not ankles) and inflated and deflated it (but i was supine the whole time they did it, so i'm not sure what they would see with that unless i was upright??). they did find that i pooled twice what normal people pool in my thighs and butt area. .................? dont know........maybe my rear end is just too big ?? lol. hey jacquie, yeah i have tried midodrine and florinef both. neither one helped the rates. i wouldnt expect them to anyway because my volume is normal, even though blood is collecting down in the legs and the "volume" sensor in the heart is THINKING i'm low volume because it is all down in the legs. i know they are all just trying to increase volume even though i'm normal volume because the heart is still sensing "low volume" since it's pooling in the legs, but none of the vasoconstrictive meds have helped to slow the rates. i dont know, we'll see what mestinon does. i just started taking that a few days ago. i'll give it a month or so and go from there............

hey sonotech, i do have some VERY minimal other symptoms, and actually, to be honest, the tachy doesnt even really FEEL like a symptom to me, cuz i dont even know it's going at 170 when it's that high. typically my knees just feel like their weak and i get sweaty. i think i have secondary symptoms being caused from the tachy, but i just cant believe that this tachy is from something they call "pots". that's just not good enough for me. i need an answer or at least someone to slow my rates down. i cant believe how many people voted that they arent even on beta blocker and i'm on like coma tose dose amounts and my rates are where at "typical" pots patients rates are at WITHOUT beta, BEFORE treatment. (and mind you, most people who truly have pots cant really tolerate betas that well, so how am i tolerating 200 mg's of beta and not passing out like the rest of the gang with pots?? docs have told me that something doesnt add up, so they agree i'm in a league of my own, but nobody wants to do anything about it. i'm just really frustrated that my cardio last week tried passing off the high rates as having to do with "stomach issues" (my gastroparesis) and "weight loss". i have literally dropped two whole pounds since i saw him three months ago, that's not a huge drop in weight, so that is NOT the cause of the tachy.........he didnt even want to do orthostatics on me when i saw him last week cuz he knew what the result would be, VERY TACHY. and he didnt have any treatment options to offer. there are trillions of types of beta blocker therapy, i've tried like 8 different kinds. i dont know why they just dont try another kind since this one isnt working? i guess it's easier to let me go on my merry way and hope that my rates just subside on their own or something, so they dont have to deal with this anymore? heh, wish i could do the same! thanks for your reply and sorry i havent gotten back to your email. just been caught up on many docs appt's and all this frustration. i'll drop you a line later on today. hope you are well. angela.

hey amby, thanks for your reply....and sympathy. yes, i was diagnosed with pots by TTT from a supine HR of 100 to 170 within 10 seconds of being tilted upright. my rates are like yours, 110-120 if i'm not doing anything (home all day, etc) but if i go to work they can be up around 160's and that, i think is just not appropriate.....and it seems like no doc wants to deal with it because "it's pots" and i will pass out if they give me anything more to slow the rates. i dont think that is the wisest call to make. rates that high need to be controlled and just not passed off as a "pots flareup". i didnt know flare=ups lasted 4 years straight?? did they diagnose you with inappropraite sinus tachy?

is anyone in here just flat out tachycardic with no other "real" ailments????!?!?!?!??!?!?!?!?! i seriously dont understand why my docs cant get my rates under control while on so much beta. i really think and feel very different from you all because my rates seem to be the primary issue and it seems like all of you are just all brain fogged/light-headed and feel like passing out, or are! my heart is just out of control and nobody is doing anything to get it down to normal rates cuz they all say "you have pots and if we give you any more beta blocker to try and slow you down, you are going to pass out, cuz the problem with pots is that the blood is rushing to your legs and your heart is doing what it should by compensating so you dont pass out, and if we hinder that compensation mechanism, you'll pass out". i have NEVER passed out and i thought that BP wasnt the problem with pots patients anyway? this is why i hate being lumped in as a POTS patient, cuz most days i really dont think i am - i seem very different from you all but because i have been diagnosed with pots, i am treated the way pots patients are treated, salt loading, volume enhancing mechanisms, etc,etc. well guess what folks?!?!? I'M NOT HYPOVOLEMIC CUZ THEY TESTED ME FOR IT, normal volume over here!!! ugh. this is so not pots, i swear. and no one is calming my rates down cuz their all scared that POTS will be triggered more by more beta blocker they give and i'll PASS OUT like "the rest of you". okay, pots doesnt even, CLINICALLY and technically involve passing out. yeah, it can happen, but that isnt the clinical criteria or underlying mechanism of pots. perhaps for NCS or POSTURAL HYPOTENSION (which they also said i dont have, but my pressure can still be like 85/60 standing, but i can feel fine with a pressure like that). sorry to vent..................................................................i am frustrated.

some people live with the fear of just the gerneral sensation that they are going to black out as well, not just FROM actually passing out so. there is fear in both having passed out and FEELING like you are about to but dont actually ever truly pass out. neither is fun, OBVIOUSLY and both are life altering.

are these PVC's or PAC'S ?? ventricular skipped beats or atrial skipped? ventricular, if they come in single form (one PVC alone followed by a normal beat) arent dangerous at all, unless the skipped beat comes "too early" and falls on the waveform that happens when the ventricle is trying to relax (this can lead into a serious arrhythmia, but i'm sure your doc knows what he's looking at when he looks at your rhythm strips).............so do you have single skipped beats or did your EP doc say that you had what we call "couplets" or "triplets". in technical definition a couplet is basically two PVC's in a row, which means there is a site in your hear that is very irritable, moreso than if it was just one skipped beat followed by normal beats.............triplets are what we refer to as a "Run" of v-tach - short run - non-sustained. ventricular tachycardia is a serious rhythm problem. sustained ventricular tachycardia is basically three or more PVC's in a row that dont break into a normal rhythm, but keep occuring over several minutes. i guess i'd want to know if your doc was looking at single foci PVC's, couplets, triplets, or just plain old PAC's .........? usually EP guys dont do EP studies on patients unless the PVC's are VERY frequent in nature or come in multiple sequence, not just single PVC's both proceeded and preceeded by normal sinus beats

that's so funny about the christmas presents. i used to buy my old cat christmas presents and she LITERALLY opened them up on christmas. mind you, some of the presents contained CAT NIP, lol, which is why she tore the wrapping paper to shreds!

aw, HOW CUTE SHE IS!!!!

thanks michelle for letting us know. i'll be praying and thinking of her tonight and hopefully the docs will figure out what's going on...

has anyone here, aside from me, had a mental stress test as part of their POTS diagnoses/and or research?

it shouldnt be. i'd be concerned about electolye abnormalities. did they check your electrolytes? also, meds can do this as well, specifically beta blockers. heart disease/fibrosis is another factor. enhanced vagal nerve stimulation can do it too. many things to rule out. i'd check with your doc, perhaps get some blood work and a holter/ event monitor.

hey nina, very interesting. i was in a POTS based research about 6 months ago and they performed a "mental stress test" while i was supine. they did exactly what you just mentioned. asking to go "faster" with trying to solve math equations, words, etc and i was pretty stressed. lol. which was the purpose of the test. surprised, well not completely, to see my rates at 147 WHILE STILL SUPINE (as math has always been a big stressor for me, as well as performing - like oral presentations ,etc). i thought that the mental stress test was the worst part of testing overall for me (even over the tilt, the cold water pressor test, hand grip, etc) ......... so from a psychological point of view, you would think they would just some it up as anxiety in my case if my HR's supine were 147 but my heart rates standing are much higher than 147 (more like 210), ---- my point is, heart rate response to mental stress and physical stress be similar depending on etiology. the body doesnt necessarily, depending on etiology, differntiate btwn good stress and bad stress, physical stress and mental stress. if there was an abnormality lets say in catecholamine production or re-uptake, the body would respond the same HR wise to mental or physical stressor (ex. trying to solve math equations as fast as you can vs. standing up for 10 minutes) if the underlying etiology has nothing to do with a peripheral neuropathy/connective tissue factor/metabolic/post viral issue etc of some sort as being the cause to an excessive HR when someone stands, but say a catecholamine issue, the HR would respond the same as it would to both mental AND physical stress. if an underlying etiology in specific people is a problem with catecholamine release or adrenal reuptake or not enough acetylcholine than the HR response would be similar, whether triggered mentally or physically (because both require release of cathechol's/adrenal/sympathetic activation). i guess this could be part of the hyperadregernic form of pots, not necessarily neurpathy or post viral form of pots. do you know what i mean?

thanks in advance for getting the full article michelle! this is very interesting data since there seems to be a lot of talk on this site about anxiety feelings,etc.

briarrose, that is sad that you work in a hospital where people dont want to hear about your illness. yes, i too work in a hospital and though there are some that i would never approach with my ailments because i know they could care less, there are many that APPROACH ME to ask how i'm doing or what the latest and greatest is with my condition. you tell the truth though, seems like a hospital or medical facility should be the first place where you'd find a compassionate heart or listening ear to someone, especially regarding your own employees, that are dealing with medical problems - and unfortunately most of the time, you dont. pretty sad to think that even medical personnel/employees get frowned on for having to deal with a med problem - you can just imagine what the actual patients go through....... i rarely feel like i'm going to faint unless i have to stand still for too long, which isnt daily. sometimes at work though, i am required to. just yesterday, i felt so bad, i did an ekg on a patient, and she seemed like such a sweetheart - she kept talking and talking long after i was done with my test, and out of pure respect and compassion for her, i tried to intently listen with a compassionate ear, all while standing. she went on for a good 15 minutes and i thought that was it for me. i was sweaty, nauseous, my vision was screwed up, but i stuck it out, continued to shine a smile at the patient (even though i felt like death) and thankfully didnt end up on the floor - never have thankfully. it is hard though. , i tried to remain focused on her and her needs instead of my own. granted, this isnt always possible, as the body will do what it is going to do and you have no control over it............so.........anyway, enough of the ramble! i know what you mean jacquie. it's tough not feeling like you are being taken seriously cuz you dont faint.. but i bet there are those who feel as we do, who DO faint. depends on what doc your dealing with, whether compassionate and knowledgable, heh, or not. sometimes i wish i would just faint so someone would look further into this problem, but my thoughts are that they probably wouldnt....... hang in there.

"HR responses during mental stress were not different in the patients and controls (18+/-2 vs 19+/-1 beats/min; P>0.6). Anxiety, somatic vigilance, and catastrophic cognitions were significantly higher in the patients (P<0.05), but not related to the HR responses during LBNP or mental stress (" ....what exactly does that mean? good article but what exactly was the "mental stress" that they performed or tried to instigate on both patients and subjects? also, does anyone know, since this article is talking about LBNP and pooling factors, what percentage differences of pooling occur btwn patients and controls? it would be more logical in these studies to not get so stuck on HR's as proof of whether or not there is an anxiety issue with patients vs. controls (as anyone can conclude anxiety, or somatic anxiety with an increase in HR) but someone should focus more on this pooling issue or some other physiologic factor that is occuring in patients that does not occur in controls (cuz even controls have increased HR's with LBNP, even if only at a smaller tachy response than with patients) ..........

what color are your legs when you pool? red, purple? blue? lol, all colors of the rainbow??

part of my reasoning for starting this question is because the neuro at mayo when i was there in march wanted to know if i was left handed or right (it didnt have anything to do with those strength neuro tests they do either). so i was wondering if they were trying to make some correlation btwn righty's and lefty's or something............. ?? or if it was just a routine part of their examination/assessment. strange too cuz i have heard about a lot of lefty's who have a lot of med problems. dont know why! and obviously some of you are righty's and still have med problems, so there goes whatever theory they were trying to prove, if any.

i would definitely go. just dont push yourself. i think sitting by the pool, at the resort might actually help you feel a little better. it may help just to get away from the daily grind of doc's appts and such. i am leaving in a week for aruba, from maine, and plan to sit on the beach the whole time! i'm psyched about it! so my advise is to go and have a relaxing time, and if you do plan to exert yourself in any way (even mild exertion such as walking), listen to your body, you'll know when to stop and rest. have a great time in florida and get a tan! ) i'd say get a tan for me, but i'm gonna get one here shortly in aruba anyway! lol!

doesnt anxiety/panic attacks make your blood pressure spike, not drop?