cardiactec

I had tremor in my legs and arms before taking my beta - along with HR's in the 200's - and horrific nausea.....I'm down to 40mg's of beta currently (from about 200 mg's) and am continuing to ween off of it because i'd like to see where i'm at for a baseline and perhaps take a break from the meds for a bit - but all in all, the beta has been a life saver for me -- the difference between working or not, having somewhat of a life or not.......

Hi Rachel, Sorry you're going through such a rough time.........what you describe sounds like what my mom's mom went through in her struggles with lupus -- very similar things, rash, joint pains, etc..... I hope you get some answers to all this and get some relief! Love ya girl, take care, -A.

dizzygrl, what prompted dr.grubb to do an EP study on you? was it solely on your HR of 200+ or did he see something on ecg or holter/event that looked suspicious for something other than just a sinus tach? i am scheduled to see blair grubb actually - scheduled to see him in december .....i scheduled with him MONTHS ago, and i know that is the norm to have to wait a lengthy period of time before seeing him .....i know he supposedly is the best of the best when it comes to both POTS and things relating to electrophysiologic problems. ....once again i wish he could just tell me over he phone whether or not he'd do an EP study on me -- because at this point, if he's not willing to, i'd rather be spared the trip out to ohio and the financial strain that comes along with it (i'm still paying off a good chunk of bill from mayo from a year ago, and that is WITH very good insurance!) .......i'm reluctant to travel that far, with that much expenditure, only to once again hear "POTS" without further investigation into this potential conduction problem. some boston docs are good, and they are closer to me - and it wouldnt be so much a financial strain .....so ....i may just go see an EP in boston... the EP guy I saw at mayo, I believe his name was Michael Osborn - a very nice, compassionate, and knowledgeable EP -- this is why i'm partial to not really investigating this further, because though he seemed to potentially question an electrical abnormality, he leaned more towards the pots as being the culprit.... i think this would be less in the front of my mind if i was working in another field! LOL. the irony in all this is that, I started in with pots symptoms 5 months into my cardiovascular program - never did i think that not only would my patients become my "work", but so would I! it's definitely more challenging i think, for me, being in cardiology, to simply ''forget about it'' -- this being just beacuse many people I work with are well aware of my tachy just from times where i've been at work and unfortunately ended up with some really rough runs of tachy spells and getting sick from it -- this is something that is hard to keep "Private", lol - when you're turning pasty white and look like your going to keel over, and then end up in the ED (which thankfully has only happened about three times in the past 5 years in dealing with this), people I work with figure things out on their own half the time........half the time, my mouth can keep my medical situation private, but my body unfortunately cant. it's easier for people who arent directly connected by their job to a medical facility to simply "detach" and keep all in all private about a medical condition, but if i have a problem while at work, i cant necessarily leave work and go to another hospital for care in order to keep it "private" - mainly for financial reasons - it cost me nothing to get care at the hospital i work at whereas it would cost me 100$ or more for a visit to another facility.

every invasive test comes with risk, but the majority of the time, especially with young people who have no other med problems, an invasive diagnostic test such as an EP study comes with minimal risk. the EP doc was more hesitant in not performing an EP study on me because the high rates were triggered by position change, hence postural tachy... mightymouse, yeah the population base isnt very large, lol, it didnt sound insulting at all. and you are right, I know I should just stop talking about this here on dinet and MOVE in some direction to evaluate this completely.....part of me wants to do this and part of me doesnt......it's more of a nuisance if anything to travel down to mass or mayo or ohio for a third/fourth opinion and part of me will SCREAM if i hear pots as a diagnoses one more time! lol..... everyone has such differing opinions about all this that part of me doesnt want to "get lost" or wrapped up in which opinion could be or IS right and which is wrong -- if i could simply just find an EP doc that would do an EP study on me, no questions asked, no "opinions", just to DO THE TEST to answer the questions and see who is right! lol, i'd be there in a heartbeat (no pun! lol) -- but i am doubtful of that happening .. ...to be honest, i wonder why the EP doc that questioned the pots diagnoses that i spoke with yesterday while at work, if he really believes it isnt pots, than i wonder why HE doesnt do an EP study on me????? ehhhh?? LOL. i thought of that......i mean, and he was really insistent on me seeing someone for a "correct diagnoses with an EP study". i wonder why didnt he just opt to do an EP on me himself? hmmmmm.... I hear ya about trying to be more private with the med problems, wish i could!......they definitely poke and pry as much as possible, so i just tell them so i dont have to hear them all day long questioning the "why's" ..... LOVE your response about your "fashion statement"! SOO funny.

i'm definitely not wandering from doc to doc -- i work in the field of cardiology, so i get questioned a lot by doctors and techs as to why i dont do certain aspects of the job (all the heavy labor parts of the work basically) -- and at that point, i'm really left with no other option than to tell them straight up why i get to "kick back and relax" while they have to stand scrubbed into cases for many hours on their feet....... i have seen two EP docs from the whole 6 years I have dealt with pots -- i mean, seriously have seen, in consult TEW measly EP's... my EP doc here in town had to beg me to go out to mayo last year, and he repeatedly asked me for a year straight until finally i gave in, thinking it would yield some further answers/explanations and i'm sorry to say it did not (this was the second EP doc i saw). so i dont drift from one doc to the next week after week. i really am not all that concerned with how high my rates get, if it kills me, or whatever BUT if there is something else going on that can be addressed, than i think it's only fair and wise to look into it more. i dont know what dr.grubb would tell me - he doesnt know me and has never evaluated me - and until he does, i would not have a clue what he'd say or think....however, he did email me several months ago after i questioned pots with rates of 200+ and he said that it is quite uncommon to see pots patients with rates this high.. coming from the CV field, i can assure you that my HR of 200 DOES NOT present the normal type of morphology we see with sinus tachy, so there is definitely no confusion there - and all the docs that look at my ECG's are in agreement on that - but my EP doc is very scared to do an EP study on me - i think mainly because he knows me so well (i work with him) and is concerned to put me at any risks... i have never had an EP study and think it is probably one of the first tests they should have done on me -- for goodness sake, they did a cardiac cath on me to check pulmonary pressures, but they never did an EP study! lol. the EP doc yesterday was floored when i told him this, as EP study would have revealed more info regarding my personal situation... i know it's still possible to have pots with HR's at or above 200, but i think it's wise to rule out electrical abnormality as already stated here. it would be foolish to make a young person live with rates like this day after day when having left out a very important diagnostic test in a very atypical type of pots patient (and yes, it is very atypical to present with pots with rates 200+, so all you that have posted here that soar at and above 200, yep, you're a rarity! lol) ...... as for the EP doc up here in maine, he travels many different places with/for his work and sees many many patients -- so he is quite familiar with the typical pots presentation, which he says GENERALLY is NOT HR's of 200+.......possible but most certainly not the norm......... jacquie, glad you posted -- the EP doc yesterday actually questioned SANRT and i immediately thought of you......he recommended i see dr. stevenson at brigham and womens.........who is the doc you had recommended? i may or may not follow through with this because i figure, if mayo clinic EP doc refused to do EP study on me, than it's probably not going to happen.... I am on beta -- i'm down to 40mg's of sotalol right now.....started getting tired or taking 200 mg's, so basically my HR's are flying off handle lately because of cutting out so much sotalol over the past three months....though, once again, not too concerned -- am working 30 hours a week! thanks all for your messages! it's great to have such support/input and nice to know i'm not the only one with rates of 200+! i knew there were some of you "odd balls" here, glad i'm not the only one!

thanks corina for your message! and sorry you wrote and novel and then it got deleted - lol, i do that ALL THE TIME and it drives me nutty! oh believe me, i'm done chasing docs. i wouldnt even have gotten on the subject of pots if the EP doc had not brought up the questioning as to why i wasnt scrubbing into cases (which involves a lot of standing, wearing protective lead that is about 10 pounds extra weight strapped to you).........i noticed you wrote that your BP went down when your HR spiked - mine didnt and actually this is one of the reasons why the EP doc questioned the pots diagnosis -- a lot of people, i know, dont know that you can have postural tachycardia without any drop in BP -- for the majority of them, they dont understand how or why this can occur, because generally the heart speeds up to compensate for BP that drops out (due to many different factors) ........so i think that is more or less why he was more skeptical on a pots diagnosis, because he thinks you should see some BP changes with such a high HR -- and with me, they didnt. but, as with some other docs, he was also skeptical because of different morphology of the tachycardia, he didnt think it looked sinus -- some think it does, others dont. lol. and nobody will really know unless an EP study is done.......but i'm done with pushing that, kind of a waste of breath at this point. it is tough not to get wrapped up in what some docs think or say regarding this, because to be able to have a quick fix to this (as this EP doc was saying, thinking it is just an arrhythmia problem that could be fixed by ablation,etc) would be so wonderful. but i know this is probably fat chance of happening, and that this is pots....... as for living life, definitely am -- finding my way around pots by working in a career that i love, perhaps not doing exactly what i want to do, but i at least am still able to function -- which i know, for some, is more than a challenge -- so i am grateful for what i can do. i just hate bringing up the subject of pots to people, especially medical personnel -- mainly because word travels fast in the medical community and i want to have access to as many jobs in my area as possible -- and have had trouble in the past with getting a job simply because "word had spread about the girl with the HR of 200 when she is standing" ....many people, when they hear that, arent too thrilled to hire you! so yeah, i actually should have just thought of some other reason as to why i couldnt scrub into cases, lol! thanks for your message.

Hi all, I have been spending some time up at a local hospital in an EP lab doing various things that dont require me to be standing. I met an EP doc a few weeks ago that I have been working with.....he asked me yesterday why I never scrub in to cases or why I'm not in the lab permanently and so I told him about the POTS diagnosis.........he asked what my HR's were and I told him off meds they crank to 200 BPM...........he looked at me and said "there is no way that is POTS, I just have a hard time that with a HR that fast, it is pots, I've never heard or seen anyone with HR's that fast with pots " ........ I have heard so many things in regard to pots and my rates -- that 200 BPM, though very high and not typical of pots can still BE pots, that a rate that high definitely isnt pots, back and forth back and forth............this EP doc ended up giving me the name to another EP doc in boston that he said I should go see for further investigation ..... I know there are few and far between on this site with rates like this, but I know there are at least SOME of you here........if your rates are this fast, can you respond to this message and tell me if any doctor has ever suggested a possibility of something other than pots going on because of the very fast HR factor? thanks, cardiactec.

hi there, baseline HR and BP are what was recorded before they tilted you upright and your "recovery" BP generally is the BP post tilt (after they put you supine).......they use the term "recovery" to indicate how well tolerated your BP was to a simple stress of just standing.... generally if we see a transient HR response that increases and then tapers off, it usually happens within the first minute or so when someone first stands up -- this is a normal response for anyone when they stand, but not to a rate of 154. 154 BPM is a pretty fast HR, even if just transient...........blair grubb defines pots as an increase in HR to more than 30 BPM within the first 10 minutes of upright tilt OR to a HR of 120 - since you hit 125, this would be a POSITIVE tilt for POTS.............AND, since you were on meds, this may have altered the test, meaning that your HR response probably would have been higher if you had not been on meds.... i dont know what a "repeat card unit" is. I have never heard of it. as for "life watch monitor", life watch is a corporation with services that include holter monitoring, event monitoring, and pacer monitoring .....sounds like they want you on a monitor to see what your heart does when not on a tilt table, but just in "normal" daily life activity ......... how much florinef and midodrine were you on when you had your tilt? how come the doc didnt inform you to stop taking these meds since they can skew the results? sounds like your test was positive to me, not sure why they are all it negative.;......defining pots, according to blair grubb and many many other docs is a rise in HR response from supine to stand of 30 BPM or more within the first ten minutes of standing OR a HR that reaches or exceeds 120 BPM accompanied with symptoms...... hope you get some answers, Angela.

I can tell if it's anxiety or POTS with me .......I have been under some stress lately and feeling a little more anxious than normal, and i can then feel my heart beating............so i know it's anxiety..............when it's the POTS acting up, I can never actually FEEL my heart beating........even when it's up to 190. everyone is different though, and i know there are a lot of people with pots that DO feel their heart racing and its NOT from a panic attack and/or anxiety......... i think one of the easier ways to distinguish sometimes if it IS anxiety, is basically things that you DID NOT list -- a person who is anxious generally isnt laughing (you mentioned tachy after laughing to produce symptoms) ............a person who is anxious will be anxious sitting or standing or lying down and generally the heart rate wont change much from supine to stand -- it'll just be high in all positions.................. also, generally people with anxiety/panic attacks can most always pinpoint and certain event, place, situation, etc to bring on symptoms of panic/anxiety -- for example, someone with social anxiety disorder will start presenting with anxiety symptoms when being in a crowded environment ......... if you get symptoms just from getting out of bed, being exposed to heat, minimal exercise, etc this doesnt sound like someone who is merely dealing with "anxiety". this is, however, overlap, with POTS/dysautonomia and anxiety -- dr.julian stewart explains this in some of his writings.........and also, as already mentioned, people with MVP, for whatever the reason, tend to deal with more anxiety feelings than those who dont have MVP (dr.grubb talks about MVP and POTS in his book, the one i just got, though he doesnt specify anxiety as part of MVP/POTS, he does point out that people with MVP and POTS have higher than normal catecholamines (adrenaline) running through their system -- which is the PRIMARY cause of someone who might be dealing with feeling anxiety and not a secondary cause) ..... i think sometimes it is more clear to the patient than the doctors or anyone else if it's clearly just anxiety or POTS (or some other problem) because generally there is a conscious awareness (a thought, a person, a situation, etc) that provokes anxiety symptoms (like someone who has stage fright will find their heart racing, they may get dizzy, sweaty, etc which all sounds like pots but their symptoms are actually being triggered by a situation that they are scared or fearful of)........ sometimes though, that is not always the case -- we see patients that come in through the ED that have had a full blown "panic attack" and they cannot pinpoint any stressors or circumstances or anything that led up to them feeling their heart race, their dizziness, their pending blackout, etc ............so sometimes it isnt so cut and dry in just discerning on a conscious level some sort of trigger to make you feel anxious.... i think what you describe sounds like typical POTS ........you may have some anxiety on top of it, but geez, who wouldnt in having to deal with POTS! lol. take care! angela.

I have had both ortho treatment (braces) AND got a tattoo four years or so ago.......I never had a problem, in regard to my POTS, with either........... braces hurt - no doubt about it -- both when you first get them put on and then every month or two (i cant remember the time frame in between) when they "tighten them up" ......it hurts for a day or two afterwards every time they have to tighten them, but it's not the end of the world.......the hardest thing for me with braces was when i first got them on -- both the pain and then also the effect it had one my gums for the first week or so -- made them feel "mushy" -- probably because the metal was pushing into the gum and making them soar.... as for the tattoo .......i had no problems whatsoever, if you find a good tat artist and a good tat shop where they are very cautious on sterile procedures, you'll be fine. i know that sounds funny to think that someone jamming a needle repeatedly into your back to create art form would be concerned about infection, but a GOOD one will be. many of them actually have to take classes about sterile procedure and precaution. my tattoo is in the small lower portion of my back and is a messianic jewish star of david with "Jesus" written in the middle.....it's a cool design and i couldnt think of anything more significant or with greater perspective to have as a tattoo.......just remember that it is permanent and whatever the design, make sure it is something that will always find meaning and/or significance to you........because you're likely to regret getting it if it's not.

LOL, how strange....I was in borders today looking for a book about electrophysiology and stumbled upon, while looking at the spine of the books, "GRUBB"....i pulled out the book and sure enough it was a book by dr.blair grubb called "The Fainting Phenomenon" .......I read a little of it, and it mentions POTS and a variety of other medical problems either associated with POTS or similar to it.....he does a great job at explaining to the layperson how autonomic cardiac innervation works and how/why people pass out and/or have things like POTS/autonomic dysfunction... I ended up purchasing the book more or less because I was shocked, for the very first time, seeing a medical book with the words POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME in it. LOL. anyone else have this book? my dad said I should bring the book with me to my appt with him in december and have him autograph it. LOL! -Cardiactec.

sandy, i hear ya about the winters .....we know the true meaning of the word WINTER here in maine! i cant stand being cold. my HR's are much much higher in the summer than in winter but i actually think i feel better in the summer than i do in the winter, just because it is actually physically painful for me to be/feel so cold in the winter -- and not be able to ever get warm!

Hello from MAINE!

I think the risk of dependency involves just being on benzo's to begin with, and not necessarily rotating the type of benzo's out every day/other day.....klonopin is extremely addictive.

hey rachel, thanks for your message! it is so crazy to think how out of wack your HR can be, or ANYTHING in your body for that matter, and how well we seem to adapt -- well, some of us. i think probably why i seem to do okay the majority of the time is because my heart has probably been doing this for years.....actually a mayo clinic EP doc told me i was probably born with it (actually my mom had to have a c-section because my HR was flying off handle and the doc thought they were going to lose me! lol. the cardio at mayo thought there was significance to this but my EP doc didnt think much of it, says it happens a lot in pregnancy)........... anyway, i wont forget to take my meds again, that's for sure! whoa, quite a response from just missing a single dose!

ok.....so to make a very long story short, i am still on 40 mg's of my beta...i forgot to take it this morning (last dose i took was 5am the day before) and went into work....my knees started shaking a bit, felt a little wobbly, and was trying to figure out why they felt that way -- and then it dawned on me, while at work, WITHOUT any backup beta with me, that i had forgotten to take my beta this morning! oh boy....so i was just going to wait til i got home to take it, but had to try and get through a 7 hour shift first -- with wobbly legs....i tried getting my meds through the ED without being a patient but they wouldnt do it, so then they tried getting my beta through the pharmacy and they were out of stock of the particular beta i'm on...........ugh. so my only option was to become a patient in a VERY busy ER....i didnt want to do this because they were busy, but after about 6 nurses standing over me upstairs on the cardiac floor and hooked up to telemetry with a rate of 200, they wanted me to go down to the ED..... went down to the ED, and actually didnt feel all that bad - just wobbly/weak feeling in the legs and they were all shocked that i hadnt passed out yet after, EVEN while sitting, rates of 180, and standing at 200 for a good 4 hours straight. i would have just tried to finish the shift and then get my meds when i went home, but the only concern was that my legs would feel too weak to "work"........not that i'd pass out or anything.... anyway, long story short they gave me like 40 mg's IV lopressor and also my 40 mg oral sotalol, and back to 80 BPM lying down ...the doc was trying to feed me more beta because he kept doing orthostatics on me and the rates would still jump to 140+ -- he said he didnt feel comfortable with that rate. LOL. oh my gosh, i started laughing and told him that a rate of 140 was pretty normal for me and had been for 5 years......anyway, they finally let me go -- no fluids or anything , didnt even feel like i needed them, just a bunch of beta on board did the trick..... wondering, anyone not need a bunch of IV fluids to feel better? seems like many here always need IV fluids to feel better..... actually, i wasnt even feeling all that bad at 200 BPM and didnt feel bad after all the beta they gave me too (my BP didnt drop out or anything, didnt feel like passing out,etc) .........see, it's times like these that i wonder if this is truly pots..........it seems to fluctuate though, i've been at 200 and have felt like crud, more "potsy" presenting and then felt like tonight, not too too bad....its wierd...

Hi all. anyone get tingling sensations down the right or left side of the body....i have been getting tingling feelings down my right legs mainly, but also the right side of my face. ....the feeling is EXACTLY the same sensation I had while taking, I think it was clonidine -- caused a "goosebump" type sensation. i was only on that med for about a month and that was three years ago....this sensation i'm getting now feels exactly like the sensation i got while taking clonidine.... anyone get this sensation??

Were you an athlete before diagnosis? not necessarily an athlete, but was able to do more/accomplish more without the fatigue factor. What was your presenting symptom? was/is my presenting symptom - worst one - nausea....also shaky limbs with standing too long....... Did you develop POTS after childbirth? I dont have any children, so the answer would be no to this question. lol. Do steps make your heart go crazy? anything makes my heart go crazy. doing steps sends me to about 200 BPM, shakiness, SOB, nausea. horrific. welcome to the forum. hope you find it helpful. -cardiactec.

I agree with doctorguest. not sure why your doc is so concerned with anti-arrhythmics. the majority of them are tolerated well and by no means are dangerous. many are very effective in helping symptoms/tachycardia. generally if there IS concern, it is seen more with "class III" (or potassium channel blocker) anti-arrhythmics because they are designed to increase refractoriness of cardiac cells, which in turn can cause sudden lethal arrhythmia's. but even so, even this class of anti-arrhythmic generally there should not be major concern - just when used, used with some caution (such as follow up ecg's after starting the med to check for QT prolongation which can instigate such lethal arrhythmias and also checking potassium levels). heck, I myself am on a class III anti-arrhythmic agent, have been for a year, and I have never had a problem. many many many, and most anti-arryhthmic agents are not harmful at all - especially ones that are generally prescribed for POTS or "sinus tach" patients -- mainly the type II class (beta blockers). good luck.

hey girl, you do what you need to do to get focused in dealing with POTS. it can get too easy to get wrapped up in all this, and to focus in too much on all of it, which can sometimes make you feel worse - so i know where your doc and mom are coming from. on the flip side, when it is hard to "ignore" symptoms or how you are feeling and not so easy to stuff in the back of your mind, it is nice to have people to talk to, who understand, who can relate, to what you are feeling/going through. BALANCE is key. I would caution you from throwing out this site altogether but I would also caution you not to be on here every day - find other things to do with your time, piano, drawing/painting, reading, something, so you can detach from reading comments/info about POTS -- living with POTS is enough already to have to deal with, let alone reading about it every day. it's good to keep in touch though, every now and then. ultimately you still need to be respectful of your mother's wishes, not so much the doc, but your mother -- obey your mother, mother's tend to know what's best for their daughters/children -- we dont know you as well as she, and there may be very key reasons as to why she feels it is best that you arent on a site that is constantly focusing on your illness -- people handle situations and circumstances in life very differently, and in your case, it might not be wise for you mentally, physically, or emotionally to be absorbed constantly in convo's about various symptoms/struggles all the time - heck, for anyone, it's not very healthy. it IS healthy however to recognize when you are having a rough spell with symptoms and to be able to have an outlet to properly deal with the emotions that come with dealing with illness -- whether it be here to talk to people who can relate personally, or with your mom, or psychologist, pastor, whomever -- just make sure to find a support system so that you are able to have an outlet when need be. take care sweetheart. you're going to make an awesome doctor some day! keep focused! ....Because POTS wont win, -cardiactec.

LOL, Julie, thanks for your concern. haha. ) i know, dont want to totally KILL my heart with it's already crazy rates!! i actually used to drink a lot of soda, lots of caffeine and actually havent for about four years, ever since my stomach started causing me problems - found that soda made me more nauseous.......so certainly not a problem for me to stop any caffeine kicks because truthfully havent been drinking much soda for years --- only would have recently started to just to gain some weight, even though i know it can trigger more nausea for me, and more tachy -- was going to just grit my teeth and roll with the punches -- but now that i know caffeine dehydrates (hey, i'm a cardiac tech, i dont know everything!) than i think it's a bad idea to be drinking caffienated soda anyway...... thanks so much for your concerns/sugggestions....i just went out to the store the other day and got some little 10 oz. bottles of grab and go juice - 170 cal's per bottle!! c'mon weight gain! i'm stickin the peanut butter to me too!!!! LOL!

LOL, I know, and MY CAT isnt even BIG! she's like 7 pounds! though my bro's cat is about 20 and when i pick him up WHAM, instant flying off the handle tachycardia! haha. crazy! cant wait to see what happens if/when i have kids! LOL! that'll be my cardio work-out, to pick up jr! as for the 60-70 year olds passing you on the trail, I've met a lot of 60-70 year olds having to take a break from the tachy/shakiness with sitting on a bench in the middle of the grocery story ....LOL!!! feels a little awkward for sure! hmmm, if your doc said it stopped abruptly it might be atrial tach -- was that when you laid down? or can you pinpoint specifically the point in time (what were you doing -- lying down after hiking, standing and hiking, etc) as to when that strip showed what he thinks is atrial tach? it's hard to say without seeing the strip, so cant wait to see it! I thought mine terminated fairly abruptly the other day when i was continuously recording myself at work - i was going at about 170, felt like crap so i laid down with the ecg strip still recording, and the rhythm terminated - but not to a tachy, to a brady! lol - actually had a brief little benign AV block......it seems like though, that when i get this wierd flutter thing i have been getting over the past year or two that it comes on after a really bad POTS event (sinus) and when i go to lay down - and the rates slows gradually, and then WHAM, a 6-9 beat fast abrupt run of something and then it terminates....havent been able to catch it though on ecg .....argh! i definitely could see some overlap between true conduction abnormality being triggered by autonomic dysfunction, so you definitely could have both - hope not though! just adds to the chaos! i DO think you should ''re-enact'' the moment you felt what you did while hiking by doing a t-mill with your cardio on a steep t-mill incline, do it for as long as you can without passing out, and then lay down afterwards to see if the rate will gradually slow and then go back to normal sinus or if you slow, t hen go into a fit of atrial tach, OR go into atrial tach while still on the t-mill and exercising and not after going supine......

I'm trying to put in more calories in a day and thus, instead of just pounding water to keep up with fluids, I've been drinking more soda -- coke and such (which has like 250 calories to it) ...........it's FULL OF caffeine though, which is a little rough on the tachy (makes me more jittery but i can deal with it) but someone told me that caffeine dehydrates you ?? is this true? I'm trying more dairy too (milk and such) but it seems to upset my stomach a bit more, more fatty, bad for my gastroparesis ..... did i already post this before?? LOL. I'm having de ja vu!

Lauren, you asked if tachy every day is normal for "any of us" . YES, for me it is ....I'm on beta still (though slowly declining the dose and completely cut it out of my life, tired of taking meds and want to see how well/or not I feel without them) and even with beta, my rates are up -- still up around 160. off beta, they can get as high as 210. if i'm sitting generally i'm not tachy..........if i stand for too long, pick my cat up, do laundry, out in the sun, washing dishes, cooking, anything basically where i'm on my feet and I fly -- every day. oh my gosh, bike riding the other day - whoa, I got home and CRASHED on the bed, was so SOB, I didnt take my HR but it must have been over 200 because generally i dont feel my rates unless they are over 180. exercise makes it go WILD, but i still do flat surfaced biking as deconditiong can make things a lot worse for dysautonomia patients....glad to see you go hiking and such.....are you still fairly active? sounds like you are and that's great!

Hey Lauren, I definitely do agree with nina that accidently ablating SA node would NOT be a good idea and would cause you further problems.....but believe me, though it CAN happen, the probability of the EP doc zapping the SA node accidently is extremely rare. so is the doc DEFINITELY sure by looking at your strips that there is an underlying rhythm disturbance other than your POTS? what you describe, the gradual slowing, especially since it stopped after going supine, reflects more of an autonomic mechanism than conduction abnormality - but then again, this can be very tricky to try and differentiate -- which can first the chicken or the egg type deal -- the SA and AV nodes in the heart are RICHLY innervated by intrinsic SYMPATHETIC and PARASYMPATHETIC fibers (part of the autonomic nervous system) - not CONTROLLED by then (thus isnt the primary "drive" of electrical stimulation -- the cardiac cells do this on their own - in the nodes/and conductive tissue) - the sympathetic and parasympathetic nervous systems both influence HR response and this is seen more with going from supine to standing, while sleeping (parasympathetic tone is greater via HR slower), with exercise (sympathetic tone is greater VIA increase HR), etc .....when you mentioned going supine slowing breaking the rhythm, that makes me think more autonomic than conductive problem, but cant say for sure.......usually with conduction problems such as with atrial tach and other PSVTS, the rhythm doesnt generally break just by lying the patient down ....heck we've had patients head to floor and legs to sky and we cant break them from their PSVT.....usually just give them a shot of adenosine, and sometimes they come out of it and sometimes they dont.... depending on correlation of symptoms with rhythm strip morphology (where your doc is seeing what he thinks is an atrial tach) and if you think it happened with vigorous activity, t-mill tests can be diagnostic to rule out exercise induced tachyarrhythmias ......that way your doc can better see the onset/offset of what he may be calling "atrial tach" .....it's worth a shot, it might not be re-producable, thus may not be a good idea to go in to EP to see if it can be reproduced there....if t-mill doesnt work to produce the questionable arrhythmia to clearly see onset/termination, than (i know my cardio did this with me), he had me do a tilt (not poor mans) and was up for about 20 minutes, watched my rhythm, put me supine and i was still tachy, then had me perform valsalva and watched to see if there was any abrupt termination or change in the rhythm...... if your doc isnt 100% certain that this IS in fact another rhythm aside from pure sinus tach, I wouldnt go through with EP ....if this were a ventricular type tachyarrhythmia, than it would be a no brainer to get your toosh into the EP lab asap (and your doc would clearly know if this was ventricular in origin) ....ventricular tachyarrhythmias are definitely nothing to mess with, but generally PSVT's (such as atrial tach) - though annoying, dont generally pose lethal consequence (though could cause hemodynamic compromise and induce syncopal event, which could pose a problem say if you were driving or something..) . they SHOULD be dealt with, either with EP study/ablation and/or meds, but if they happen infrequently (as flop mentioned) than you might not even have to do ANYTHING about it ......and there are certain things you can do without meds (and this should be established by your doc, your doc should tell you if this is a good thing or not for you to do) but valsalva maneuvers, splashing cold water on your face, gag reflex - all stimulate parasympathetic activity and generally can break a tachyarrhythmia, not ALL the time, but most of the time .... i'd first establish and confirm that there truly is a rhythm disturbance. i'm PMing you right now... cardiactec.