cardiactec

So I went into my doctors office today (electrophysiologist) because my gastroparesis has been a nightmare lately (probably mostly from stress). I was unable to get ahold of my GI doc because he was "busy" so I called my EP and told him I had been having difficulty with my stomach, having a hard time eating, and also keeping in fluids.....he told me to come into the office for IV fluids. I was first amazed at this instead of him just telling me to go to the ER...........

I got to the office and from start to end had none but a wonderful experience even with feeling so horrible. I went in around 330 and they started pumping bad after bag of IV saline into me and the office was getting close to closing -- my EP doc came into the room, told the nurse she could leave and that he would take over my care. he sat there talking to me, changing my IV bags, and when the last one was done, took out my IV (we are talking like the grunt work here!!!) -- then proceeded to help me up from having been laying down for two hours....i got dizzy and lightheaded, he stayed by my side, checking my vitals, then i got up and had to sit back down cuz i felt faint.....he came over to me and helped me to the waiting room and told me to sit on the couch for a bit and that he'd come back to check on me (mind you, the office has been closed for an hour and everyone was gone!) .............he came back and then asked how i was feeling just sitting and i told him i felt ok, then he had me stand up to make sure i was ok -- i stood up and almost passed out and so he helped me sit back down, waited some more and then asked me if i was ok sitting -- which i was..........he then asked if i felt ok to leave the office and i said i thought i would be ok sitting/driving and he said that he would help me out to my jeep. he put me in a wheelchair and literally wheeled me out, right to my jeep!!!!!!!!!!!! what a sweetheart!!!!!!!!!!! oh my gosh, i swear I have the best doc ever. so compassionate.

just thought i'd share my wonderful experience with you all.

Maxine,

what a bunch of bologna. I am so sorry for your experiences lately. how rude and arrogant of this doctor. I know it's easy to say, but try not to take it to heart and please DO write this doctor off. You deserve so much better, so much more understanding, so much more compassion. I know it's difficult because sometimes, probably most the time we walk in meeting new docs without first hand knowing if they are going to treat us this way or in ways that all patients should be treated -- with dignity, sincerity, and compassion -- wish we could know beforehand where these docs who treat people so poorly were hiding out so we could avoid them like the plague.

So sorry for such a cruddy experience, yet again. keep holding on though, there are doctors out there who know how to truly care for their patients. i will be praying that you are lead to someone who will respect you and take care of you.

take care,

cardiactec.

that is EXACTLY what they are trying to get away with in saying : that I would be jeopardizing the patients health if I ever fell on one of them when passing out. that is a crock, that would never happen -- i cant count how many times i have passed out on one hand, over the course of six years -- very infrequently. PLUS, I work in noninvasive cardiology and am not in a sterile field or near critically ill patients -- the patients that come to me are well enough to be on a treadmill, so i'm not seeing the harm that could be done if by chance i happened to pass out and fall on one of them. the things people try to get away with are ridiculous.

this is clearly an AMA issue. they hired me knowing my conditions, knowing whatever "Risks" were involved, so it's illegal for them to release me from my position based on the fact that i have a disability.

what really errrks me is that they make accomodations for another cardiac tech, for the same job requirement that i am unable to perform -- he doesnt have to perform this job requirement because of his medical problems, so why should I be responsible for performing this job when I have legitimate medical problems as well? I brought this up to them and they gave me some lip about how the other employee has been here for awhile and wasnt hired on with the med condition but it came about years after they had hired him. BTW, I am past my three month probation period, not sure if that would even play any benefit to the hospital anyway in this particular case. it's discrimination, period.

hey morgan, i was passing out on a very rare occasion before my EP study/ablation and have only passed out once since the ablation and that was the day that work pushed me to the point where I couldnt tolerate my symptoms.......

hi all,

thanks for your responses. so frustrating. i do however have a back up plan as of yesterday -- a bit more of a challenge in regard to job location, but have been offered a job two hours from my home and the pay is 7$ more an hour than what i am currently making. it is quite the haul to have to, on a weekly basis, drive two hours (and then stay with my grandpa who lives in the area) for this job. i feel blessed that at least this opportunity has come up, but i am really angry that i am being forced to leave my place of employment (and how conveniently located it is -- 15 mins from home) and really want to take on some sort of claim against them....

the hospital does not have a union. my dad, being part of the carpenters union, tried to get the union in this hospital several years back and it never happened......... ( ........probably because they know they can get away with stuff like this.....

per diem is basically an "as needed" basis -- whenever they need you, they'll call you. NOT a good setup financially. same pay but a major hourly cut, and perhaps not even any hours some weeks.....

yep, had documentation before i started this position - my cardiologist even wrote a note to employee health explaining POTS and that i would need time for "frequent sitting". they are no asking for clarification on what "frequent" means -- just basically playing head games....

i know there was someone on this board who worked at the same hospital and basically was fired for the same reasons, because of POTS/their disability. .....i just rememberd that coming in to work this morning......crazy.

thanks for all your thoughts/concerns. it means alot.

hey there,

I would agree with the others here that have posted to your question.

if you break the word arrhythmia down, simply it means "a" = without and "rhythmia" = rhythm........ = without rhythm.

There are very very benign arrhythmias and one's that are considered more serious. Sinus arrhythmia is most common "arrhythmia", and more common in younger folks. this type of "arrhythmia" is only classified as arrhythmia for its irregular waveform appearance on ECG (as morgan already mentioned -- wont get too technical here). this arrhythmia is not dangerous but just indicates a slight RATE change due to respiration (breathing in and breathing out) and NOT a rhythm change (the rhythm still is originating in the sinus note, just changing in conduction speed). increased autonomic tone (parasympathetic or sympathetic) on the heart causes fluctuations in heart rate (still remains sinus rhythm with sinus arrhythmia but just suttle increases and decreases in your heart rate/pulse).

the arrhythmia's that are most concerning are not as the one mentioned above. one's that cause a rate/pulse change and also cause a RHYTHM change can be concerning. you can have a heart RATE in the 80's, 90's, 100's and the RHYTHM can be benign (such as with a sinus rhythm, low atrial rhythm, wandering atrial pacemaker) but you can also have a heart RATE in the 80's, 90's, 100's with a RHYTHM that is not considered completely benign (such as with atrial fibrillation).

It is a bit confusing, as morgan already expressed (i think i'm a bit foggy right now too morgan, you did well to explain) ....hopefully I didnt confuse you more.

I do believe from what you describe that this is probably just sinus arrhythmia, but is most important to capture the "arrhythmia" on paper to differentiate between normal variant arrhythmias (such as sinus arrhythmia, normal sinus rhythm with occasional PVC's or PAC's, etc) and serious arrhythmia's (such as ventricular tachycardia, heart blocks, etc)

Hi all,

I write you this feeling pretty gloom and frustrated.

I was hired at a hospital four months ago (full time) with the hospital knowing all about my med conditions before hire, especially POTS, and its limitations). Part of the job I cannot do, as I attempted this part of the job on memorial day and ended up passing out......I have been told by my boss that he is moving me from full time to per diem in a month because he needs someone who can do all parts of the job.

I have gone to human resources and employee health about this and nobody seems to be doing anything about it, except for being passive and letting my time run down from being full time employee to soon to be per diem. I KNOW this is a game they are playing by putting me per diem instead of just firing me, because they know they cannot get away with firing me for a disability -- the game is that they believe i will just end up leaving on my own will because no body can afford to be per diem and make ends meet. -- and THAT they can get away with.

so, my question is, would you seek legal representation here?? This is clearly discrimination against AMA.

What do you think? I am so upset right now......

Interested in this, as I just saw my neurologist and he said that he has not seen another POTS patient over his 10 years in being a neuro with POTS (sinus tach) AND atrial tach (PSVT) and Vtach (lower chamber of the heart - ventricles tachycardia).....so wanted to see where all of YOU are at, see how many actually have been diagnosed with more than just sinus tachycardia/inappropriate sinus tachy/POTS.

I had a 24 hour holter which showed "sinus tachycardia averaging between 120-200 BPM". that was before they knew this was from position change (POTS).

The really symptomatic stuff (ie: palpitations) I caught with the event monitor (worn for three weeks before I actually had symptoms, pressed the record button, and finally got the answers as to what was causing my symptoms that were very very different from POTS (I actually never feel my heart racing with POTS, even when it is up in the 180's). The event monitor caught an atrial tachycardia at 260 BPM and also caught a nonsustained ventricular tachycardia in the 200 BPM range.

I know EXACTLY what you are feeling. you are relieved that you finally caught the darn thing so people can see that you are not a lunatic but that what are you experiencing is FOR REAL! I wore a couple holters and one event before my last event monitor worn last winter which caught my CRAZY atrial tachycardia at 260 BPM! yeah, no wonder why i felt like crude. I'll never forget the cardiologist saying before seeing those strips "well if you had a rhythm problem we would have seen it by now, it's just POTS" .

hopefully this will move forward your care, and potentially give you some better treatment options -- but even if not, at least you have your results and can be validated.

take care.

cardiactec.

Sorry for this discouraging news, but do pray that you will be ENcouraged, comforted, and at peace during tihs time. You are in my thoughts and in my prayers.

thankfully my cardiologist pretty much has become my primary caregiver -- mostly for POTS, but i also discuss other things with him that probably would be more appropriate in discussing with a GP/PCP. sad truth that most GP's dont have a clue about autonomic dysfunction/POTS - I know mine does not. it is even worse when GP's dont want to learn more about it and/or do not have the time to learn more.

i think most people probably keep going to docs that dont know anything about autonomic dysfunction for the very reason you said -- because you know you need medical care.... also, most docs who are neurologists caring for auto dys patients are in their own subspecialty of neurology...... no plain jane neurologist (at least from my experience) works with patients who have autonomic disorders such as pots -- so you end up having to venture off to other facilities that, for the majority of us are off in some far away distant land from wherever it is that we live. this is a strain for a lot of people to look into for appropriate care -- physically and financially so i'm sure many people just have to resort to their hometown docs.

there is not a lot of understanding, answers, or treatments for auto dys, that most plain jane docs dont even want to spend their time tapping into resources to try and help their patients - mainly because they dont want to fail their patients. understandable but sad. ...........i had a cardiologist i worked with several months ago enter a discussion with me about pots. he said he used to do a lot of research and used to be quite interested in pots, but when he spent countless hours trying to "find the answers" and trying to find therapuetic meds for his patients which failed, he said it was no longer worth his time because it left him feeling like a failure and left his patients no better off. sad. I just saw my autonomic dys neuro down in boston and kind of reminded me of the discussion several months ago i had with the cardiologist. the neuro in boston told me that he has weekly phone conferences with the big groups (mayo, vanderbilt, etc) and that nobody can ever agree on anything regarding pots -- not on meds/treatment options, not on etiology). tough i'm sure.

I am grateful to have a cardiologist who is in it for the long haul with me in regard to pots, who is willing to learn all he can about pots, and who has not given up. I can only hope and pray for the same type of care for all of you - you all deserve it very much.

-cardiactec.

flop, nope you are accurate in what you have said!

I think it is extremely important for doctors to listen listen listen to their patients. if something doesnt feel right, or feels different from something else previously diagnosed, EVEN IF whatever else diagnosed has been the only thing seen while in the docs office or with random docs appts, doctors NOR patients should just assume that what the patient is experiencing is something that has already been diagnosed...i literally had my cardiologst say, after three years of me complaining about these sensations and NOT ordering an event monitor, "I think if you had an underlying rhythm problem we would have seen it by now". nuts. they saw it all right, when i slapped a monitor on my chest to prove it to them. thankfully i am blessed enough to work in cardiology, ironically enough, and catched the rhythms myself...

flop is right in that the majority of the time, the things people feel are "normal" extra or skipped beats such as single PAC's or PVC's.....BUT that being said, just as flop suggested, it is important to prove or disprove these normal variants by getting a heart tracing/wearing a monitor.

I was told that what I was feeling was just POTS, was told this for four years, with syncopal events, and presyncopal events while driving and having to pull over on the side of the road so i didnt crash -- just recently found out that i have three different tachyarrhythmias -- two different atrial tachycardias and a nonsustained ventricular tachycardia. go figure! the rates on these rhythms were/are 260-280 BPM which in and of itself CAN be dangerous even in the absence of heart disease because the heart is not able to perfuse the vital organs at such a rate, such as your brain, and thus can end in hemodynamic collapse, syncopal events during VERY inappropriate times (ie: driving, etc). i had an ablation for one of these three rhythm issues and was put on antiarrhythmics for the other two that were not inducible in the lab.

depending on how long your episodes last, and to the degree of which you are symptomatic, i think it is worth looking into further. have you at least had an event monitor to document was exactly the rhythm is when you feel it?

take care and good luck.

cardiactec.

I JUST cancelled my July 1st appt with blair grubb. the secretary told me that they had to move a bunch of his appts around because of his wife being ill, but that my appt on the 1st was okay and that they would keep that day/time open.....so call call call to those that are trying to get in to see him.

hope this helps someone out.

The PR interval on ecg means the time it takes for the electrical impulses to travel from the sinus node, down through the AV node, down to the ventricles. a short PR generally is less than .12 msec and can be a normal variant. a short PR in general is indicative of faster acceleration of electrical impulses from SA, to AV node to the ventricles. this can be seen with certain preexcitation arrhythmias/paroxysmal tachycardias. for example with WPW syndrome, baseline ecg usually shows a short PR, along with delta waves and some other findings as well. other causes are hypocalcemia or hypokalemia.

have you had a stress test? usually if there is a short PR seen on ecg and electrolye problems have been ruled out as the culprit, docs do stress testing to check for preexcitation (paroxysmal tachycardia - not sinus tach/pots). also, docs are more apt to do stress testing even more if patient is having periodic sensations of rapid heart rates.

I too have quite an interest here in a possible link between pots/autonomic dysfunction and MVP. where most people with MVP do not have pots, some people with pots do not have MVP - but with any pathology there can be more than one etiology (cause).

I think one etiology of pots is connective tissue disease ie: marfan syndrome, ehler danlos, etc. MVP is basically caused from collagenous fibers that are messed up by a process called myxomatous degeneration. this means that the structural protein collagen forms abnormally and causes thickening, enlargement, and redundancy of the leaflets and chordae..........if collagen here, in the heart is messed up, than makes sense that collagen elsewhere in the body most likely too is messed up -- loose, lax. collagen is a building block to hold structures together. makes sense that people with messed up collagen would pool in their legs, have MVP, and other bizarre features that are not understood by most medical personnel.

I have heard doctors say there is a connection, i have also heard that they are not. some docs from mayo believe they are.

I have been to boston, new york, and minnesota (mayo clinic) and to be quite honest, I have recieved more help from my home town cardiologist than all the other places combined. sad but true. mayo, as in your experience with cleveland, had excellent eqiupment and initially had many diagnostic tools they utilized, but follow up has been extremely poor - from all three places.

you could come to maine and see my cardiologist... lol.

hi there,

certainly sounds like pots to me. and you knew it before anyone else, well, at least that something wasnt right. glad you finally got a diagnoses.

Hi cardiactec

i watched my HR over the last 10 years and i kept telling my doctor that something is wrong with me because my HR doubled up and I had loads of weired and bad symptoms whilest standing. There were times, were i was bedridden for weeks because my body didnt allow me to stand up.

The TTT was just the final test for me showing everybody and myself that something is wrong with me. I got diagnosed with POTS last summer. But like i said, the TTT got stopped after 50 sec. No way i could have handled it longer. Does my Diagnosis not count now? because the TTT didnt last 30 minutes? I got diagnosed in a autonomic section in famous university clinic here in germany. I think, that If the specialis who diagnosed me would have had any doubts about my TTT he would have never gave me this diagnose.

Or what do you think?

carinara,

my heart rate went from 90 supine to 200 within 8 seconds of upright tilt and stayed that way throughout 30 minutes of me being upright.......

a good way to test yourself, without being in an actual medical setting is to see what your heart rates are on a normal day, outside of a medical facility. see what your rates are like while in the comfort of your own home. supine and then standing. that perhaps will help you figure out or make any correlation to pots and/or anxiety.....

that is such nonsense it's not even funny. i couldnt even read your whole message because it sickened me to read how horribly you were treated. dont listen to any of it. that doctor obviously had no clue, and will never unless they go through what all of us go through on a daily basis living with dysautonomia. how ignorant. ignorance truly is bliss.

I WISH it were all just psychological, because then at least they could TREAT the problem and I could have my life back. I'm currently going through some problems in trying to keep my job because I cant perform parts of the job without terrible flare ups of POTS. it makes me mad to think some doctor is saying that this is all psychological when I have been busting my butt to try and get myself into the EP lab, to work in the EP, because I LOVE IT, but I cant because of my physical limitations due to pots..........it really hurts ME to hear of your experience with this doctor, because unfortunately there are other doctors like that who think the same way....................pots has been a hindrance in my life, and has prevented me from doing things i want to do...it is a terrible hardship....how dare this doctor, with you, with others with dysautonomia belittle our experiences and do not validate what we go through by trying to understand what we have to deal with, instead of putting us down with their "it is all psychological" diagnoses .......how dare this doctor, and others, think the way they do about dysautonomia.

hang in there, and i am sorry sorry you had to listen to such garbage. try not to let it get you down.....

take care, and hang in there.

denervation means a loss of nerve supply, anything that breaks down nerve fibers. I personally havent done much research in this area as I find the world of neurology both extremely boring, lol, and extremely difficult to understand - and also, as we all can relate, extremely difficult to treat, probably from the lack of understanding regarding certain pathologies behind neurological disease/disorders....

I am very much interested in correlating or trying to correlate ehler danlos, and other connective tissue disease to breakdown of both cardiac collegenous fibers and nerve fibers and thus, causing arrhythmia issues........i find it odd in my own experience that six years ago i did not have any symptoms of rhythm problems, only had pots and also ehler danlos.....and then three years ago, out of nowhere, i all of a sudden have ectopic atrial tachycardia (which primarily starts in adolescent years - mostly seen in kids) and ventricular tachycardia on top of ehler danlos and pots, two very strange conditions, both that are not fully understood. i think there is a definite connection between collegenous breakdown affecting cardiac neuronal innervation, both in the heart and periphery.

i have read that conditions like lupus can cause denervation. also physical injury to the body can cause denervation.....diabetes is a definite cause of denervation....

have you worn a holter monitor to prove that your heart is actually racing for six hours STRAIGHT during the day? people with positional tachycardia generally only are tachycardic when they are standing, and only mildly tachycardic when sitting...

my cardiologist explained to me that because my heart rests occasionally throughout the day and is not continuously pumping at 180+ that it is not a strain on the heart. that was one of his concerns - that the heart wasnt getting a chance to rest. when i was admitted several months ago for me ep study, and off all meds, he was mostly interested not in my study/ablation/etc but in what my heart did over a 30+ hour period - most of it spent in bed or sitting. my heart rates in bed and sitting were between 70-100 and standing of course 190+. sleeping in the 60's with some ectopy. he told me he was relieved to see that my rates were low while at rest.

if your heart is getting a break periodically throughout the day than rates in the 150's periodically wont damage the heart.

Hey all,

If it's not one thing, it's another. Just had an ablation for SVT, now I have to have surgery for an endometrioma. I had a laparoscopy seven years ago as a diagnostic tool to see if I had endometriosis and they found seven years ago that I for sure have it. I have been having a lot of pain for the past several months so they did an ultrasound and saw an endometrioma. I now need surgery - next week - to remove it and hopefully help with the pain.

Anyone else here have endometriosis and/or have had endometriomas removed because of it? The first lap I had I did not have any endometriomas or what they refer to as "chocolate cysts", so I'm a little concerned the recovery will be a little tougher - ie: more pain.

I'd appreciate any insight, thoughts, etc any of you have regarding this.

Hope you all are doing ok, hanging in there with the POTS...

one more thing, that is another thing, the anesthesiologist is wigging out about doing surgery on me with the newly diagnosed SVT, nonsustained V-tach, and POTS. Should be interesting.....

-cardiactec.

I have an appt with dr. grubb scheduled for july 1st that i most likely am going to cancel. I will keep you all posted as to when and if for sure i'm going to cancel so one of you can at least get in on that appt.

hey there,

yes, it definitely felt like the SVT. I can completely 100% of the time know when it is my atrial tachycardia and when it is just POTS, sinus tach. I actually cant even feel my POTS - sinus tach - even with rates up in the 190's. the atrial tachycardia feels very different than the sinus tach.

how are you doing? any better?