cardiactec

hi pat, what i am feeling is a definite FAST/tachycardic type fluttery rhythm. junctional escape occurs with an inherent rate between 40-60BPM, which wouldnt be classified as a tachycardia/fast rhythm.......so i doubt that is what the problem is with me because this is a fast rhythm (not slow, 40-60) and very fluttery feeling....... .....it doesnt happen when i'm pre-syncopal or, like with this morning, before i passed out. it usually happens when i am feeling okay actually.......i am almost certain its mechanism is some sort of SVT in origin, maybe an atrial tachycardia of some sort...... thanks for your input though on suggestions of what it could be...

thank you all for your concerns/replies.... I did talk to my cardio shortly after it happened.....after i filled him in with the vitals that i got and my symptoms he said it sounded like a vasovagal and that unfortunately it goes along with the POTS and potential progression of the disease (because he knows, after seeing him for 5 years, that i have never had an syncopal episodes). he seemed a bit concerned and said that now that i have had an event, that i need to make sure that i get myself supine if i feel these symptoms i had this morning coming on, no matter where i am or what i'm doing, and no matter how embarrassing it may seem, he doesnt want me to physically get hurt by falling.... he was really nice and compassionate. he said just to take it easy the rest of the day, salt load, fluid load and get some rest...... i did mention to him that i have been having some strange fluttery sensations in my chest/neck constantly for 1-2 minutes and then it breaks....he didnt seem to think that the arrhythmia had anything to do with my passing out episode this morning because i didnt feel the fluttery feeling before passing out ....however, he said, even though i have had these fluttery sensations before in the past and that they are infrequent, he still wants to have me on an event monitor if they become more frequent over the next couple weeks.....he said if it did turn out to be SVT/atrial flutter or something that he would have me come in for an EP study, but that unfortunately it wouldnt fix the rest of the problems -- auto dys/pots/etc......and if it was a trivial type of arrhythmia (like an SVT and not a ventricular tachy) that he might just want to keep tabs on it or up the dose of my beta to try and cut out the rhythm disturbance.....he didnt want to get too deep into discussion on it until or unless they were able to definitely SEE the rhythm....... nadine, as for "how long have you been on florinef" ....about two months now...........it's wierd, i think it is helped but in a wierd way....it has helped to cut out some of the pre-syncope i had been having (fewer episodes) but the prodrome is more abrupt now, almost going from feeling okay to "you have two seconds to sit down or that is it"..........strange....

Well, I know how it feels to pass out now.....ugh... ....this morning i got up out of bed, stood up, strapped on my BP cuff (just cuz i like to see what my BP is doing now that i'm on florinef), and i felt fine at first -- BP was like 110/60 and HR 130. the cuff started to deflate and i was just getting ready to take the cuff off when all of a sudden i got nauseous, then i felt my heart rate plummet in my chest, literally felt BIG BOUNDING SLOW BEATS in my chest, then my head went to the sky and I KNEW it was coming, only because i knew that five seconds earlier my HR was 130, and i knew, just from feeling how slow it was in my chest that it was around 30-40. i quickly hit the BP cuff to inflate cuz i knew i was going down and i wanted the reading and the next thing i remember i am on the bed and STILL FEEL LIKE PASSING OUT WHILE SUPINE. i was having cold sweats, was nauseous and i LITERALLY felt like i was going to die. i almost called out to my parents who were in bed at the time, but i just laid there and closed my eyes and prayed for the feeling to go away as i could STILL FEEL the very slow but HARD beating of my heart. i actually put my finger on my carotid and it was so weak and thready and slow i was so scared....i started crying and then looked at the cuff and it must have got a reading before i blacked out -- it read 66/52 BP and HR of 40!! ......... i was so scared to get up after that, but luckily i have been ok since the episode early this am............ how scary.........do any of you get that sensation in your chest, that your HR plummets out, to a very very slow HARD BEATING BEATS/HR? i still cant get over it................................ oops, PASSED OUT is what i meant in the "topic title", not PAST OUT! man, not doing good today!

have you ever been checked for sjrogens (SP?) disease? just wondering with your eye symptoms why did your doc say florinef could kill you??

I have had a 120 min (2hr) and a 240min (4 hr) gastric emptying study. i was abnormal on both, but my GI doc wouldnt refer me out to boston to see a guru in gastroparesis until i was proven to be over 10% retained food at four hours on the 4 hour study because he said mayo clinic and lahey clinic guidelines for gastroparesis are that you have 10% or more food retained within the stomach at four hours...... ......my GI doc said there is a lot of variability on gastric emptying studies, that some facilities conduct a two hour study and some a four hour. not sure why he put me through the two hour when he thought that the four hour one could only truly definitively diagnose gastroapresis......so he ended up, after finding me abnormal at two hours with 39% emptied from my stomach, having me go back only to find out that i was STILL abnormal at four hours with 49% emptied at the four hour mark..............a lot of places utilize the 2 hr and if you have emptied at least 50% of food content from the stomach at 2 hr's you are normal and if you have more than 50% in the stomach at two hours retained they say gastroparesis............not sure which one is most reliable cuz it varies from facility to facility..... seems like there's a lot of contradiction with the gastric emptying study, but i hope you get some answers either way........since everyone always seems to do what mayo clinic does, perhaps you could call the guru's at mayo and see what is diagnostic timing for their gastric emptying study in order to make an accurate diagnoses of gastroparesis.......

hey maxine, i completely understand where you're coming from......two words, MURPHY'S LAW! when we want something to happen (not that we necessarily WANT a rhythm problem) but since we know it exists, we want it to be caught - but when we have the opportunity to PROVE that it is there, it doesnt happen! arrgh! i have only had a holter monitor (24 hr) and it just picks up the sinus tachy, but i have never had this strange episodic sensation that i get while wearing a holter......about 6 times a year (yeah it's infrequent but pretty annoying enough to make it feel like it is MORE than just 6 measly times out of a whole year) i get a very strange CONSTANT fluttery sensation for about 25 seconds in my neck and I KNOW BEYOND A SHADOW OF A DOUBT that it IS NOT a sinus tachycardia. i never FEEL my sinus tachy, even when it's up to 190, so i know it is ANOTHER rhythm disturbance. i write you this this morning because i literally, about 45 minutes ago, just had another one of these episodes......i questioned my cardio about it a year ago and told him how infrequent it happens but that it is annoying and that it is not a sinus tachy and he said HE THINKS it's just "sympathetic tone". i totally disagree and am leaning towards calling his office to have an event put on - BUT like you, i am more scared to go through the process of getting one put on and then having nothing happen! frustrating. what's your tachy like on beta? how often do you get the "sensation that your heart is stopping" ? i am so sorry about the nurse treating you like that........hopefully someone does something about it in an authoritative role that can either smarten her up to start treating her patients with respect or have her leave the practice..... i hope they come up with a way to catch these episodes that you are having....... -Angela.

hey jacquie, i've tried compazine....it didnt help and gave me terrible restless leg...............i havent tried the other med you mentioned....hopefully you'll get some relief with these meds.....

hey rachel, have they checked you for lupus? ......i hope you get to the bottom of things soon....and i'd definitely have someone look into the possible EDS....

hey amby, if you are concerned with vitals, i'd give another beta a try.......personally, and i know everyone is different and responds differently, but after taking a gazillion different types of meds to slow my rates, sotalol seemed to work very well for me..........just a med to mention to your doc if you are noticing your vitals are crazed........what are your rates? BP? one thing though if you do decide you want to try sotalol, this can cause QT prolongation (basically in simple terms it can trigger bad rhythms) so ECG monitoring every month or so is A MUST if you are going to be on this medication........ i hope you start feeling better soon.....

hey jacquie, i just found this on a website....check it out.....perhaps you could ask your doc for this test?? --> "Some individuals can have normal Gastric Emptying Studies, yet they can be completely debilitated with nausea. This sub-set of patients is liable to run into difficulty in gaining compassionate guidance from the medical community. Nausea of motility origin will periodically interfere with sleep. A pattern may be seen one or more hours after eating. Nausea develops, building to retching, or the nausea can remain constant. The intensity of the nausea usually increases after physical activity, hot environments, or stressful events. So puzzling is this nausea, that on occasion patients have been told "It's all in your head." There is a test to show that this is not the case. This test is called ELECTROGASTROGRAPHY (EGG) Electrogastrography (EGG) may help to further define what is happening in the patient population who have normal gastric emptying studies, but are symptomatic. Just as an ElectroCardioGram (ECG) measures the electrical rhythms of the heart, so too can an ElectroGastroGraphy (EGG) measure the electrical rhythms (gastric slow waves) of the stomach. Cardiac 'dysrhythms' are well understood and correlate very well with different diseases of the heart. Stomach 'dysrhythms' are just beginning to be understood, and evidence is piling up that implicate these 'stomach dysrhythms,' with symptoms of nausea and a feeling of fullness (early satiety)."

morgan, you said "I guess my whole feeling on this is, how nice it would be to have ONE validation before I die, that not everything about me is a mental problem." I understand where you're coming from......what HAVE YOU been diagnosed with? just pots? i think it's not so much a validation feeling (for me anyway) as it is more a way to understand my situation better -- a true diagnoses helps to move beyond where we are at symptom-wise and how we go about our lives, because we can adjust and adapt better when we know more definitely what we're dealing with -- ....it's like someone telling you that they are sending you on a vaca somewhere - well, the first thing you'd want to know would be "where are you sending me to vaca"? -- you'd feel pretty uncomfortable and agitated if you packed your suitcase full of bathing suits and short/t-shirts and you ended up in a freezing cold climate! you would both WANT AND NEED to know HOW TO PACK for the trip (winter clothing vs. summer clothing) in order to adapt and adjust to the environment............getting a diagnoses i believe is similar to this analogy...........once we know exactly what we're dealing with, it helps us to better prepare for our journey....ha, it's not a VACATION by ANY stretch of the imagination, but a journey nevertheless. ... keep hanging in there morgan.....i hope you get some more definitive answers soon....

My EP is great! I have been seeing him for 6 years now, and actually he was the one to diagnose my pots - when EVERYONE ELSE was telling me it was "all mental"/anxiety/etc....... there are good EP's/cardio's/docs out there, you just have to look for them.... it is OUTRAGEOUS that your cardio was so obnoxious. i would not stand for that for two seconds. find yourself a doc that cares about you and your symptoms. it really ticks me off that doctors think they can get away with being so cruel to people, especially those that are SICK! some of them are just on a power trip and personally i think they should power trip their way OUT OF THE MEDICAL FIELD before they damage not only a person's physical state but mental state as well. sorry you had to deal with this doc. he obviously needs a good kick in the pants. take care and i hope you find a doc that will treat you with respect. -Angela.

I was just talking to a cardiologist i work with yesterday - he was saying how he'd been sick for a week with a cold and i was telling him, when i thought about it, that i hadnt had a cold or flu bug in YEARS - like 10 years!! seriously. he replied "well, you may have pots, eds, and gastroparesis, but you're lucky to have one heck of an immune system". i think he's right......other than autonomic crap, i am pretty healthy.. sorry you're going through so many colds/flu's/UTI's.....no fun.......take care of yourself and hope you start feeling better soon....

i was just recently down in florida for vacation and by the third day, i ended up breaking out in this horrific rash, so bad that i ended up having to go to a local ER.......the rash seemed to intensify and become 10X worse with being out in the sun. the second i said to the doc that i was on florinef he said "ooowww, your not supposed to be out in the sun while on florinef cuz that it what is causing your rash".................i didnt know this and i had never heard of sun exposure being contraindicated while being on florinef....i even looked it up online, on many different websites and nowhere could i find sun exposure being contraindicated while taking florinef... anyone else had this problem?

just wondering, i know there are many many different causes of autonomic dyfunction (EDS, neuropathies, post-viral, hyperadgrenic, etc) but i am wondering, symptom-wise, does anyone know potentially what the "lesser evil" type auto dys would be on daily function? just curious if the type of autonomic dysfunction plays a role in function level (regarding symptom presentation, how limited, if at all, some of us are as compared to others who only deal with mild symptoms and function OK) ... i have heard that hyperadergenic form of pots people can actually function somewhat better than compared to those with other types of auto dys, but i dont know if that is true or not....... ......anyone know anything regarding function level correlating with specific auto dysfunction classifcation/type?

hey megan, still thinking of you and praying this is nothing serious and something they can easily take care of. thinking of you tonight. *HUGS* Angela. p.s. i get the difficulty swallowing issue too that is going on (i know you posted this somewhere else)....my GI doc thinks my swallowing troubles, and yes also just the act of swallowing, is related to my gastroparesis, that i have dysmotility of the esophagus as well.........something to possibly investigate with yourself.....

Jacquie, sorry to hear you are left with no explanation, at least not right now, as to why you are so nauseous. i would go for the four hour study and see what the results are like, but like others have said here, many ortho intolerance people can have nausea just from mere orthostatic effects and not necessarily gastroparesis.....or another possibility is that you have intermittent gastroparesis and it just wasnt caught at the time of your GES.... .....i know the diagnosis is just as important as treatment options (at least for me it is) but at this point, if you are extremely symptomatic by the nausea, than i think your focus needs to be at trying to control the symptoms instead of finding the cause.....many times it's easier to treat the symptoms when you first know what the problem is, but when all diagnostics have been exhausted and they cant pinpoint the problem, i'd look into pro-kinetic meds or other different meds to see if it at least helps your stomach out any...... ....i also wouldnt give up hope on finding the cause of the nausea, because you still could have gastroparesis or something else going on........ and it doesnt sound like you have exhausted all diagnostics to prove or disprove all stomach/other problems that could potentially be going on, even aside from gastroparesis as being a potential cause.............have you been checked for wheat (gluten) allergy? had an endoscopy? someone also mentioned meds as being a possible contributing factor to your nausea.........so i'd explore that as well to see if any meds you are on could be triggering the nausea...... dont give up at looking into the cause behind your symptoms, but at the same time, treat the symptoms while you continue to explore potential causes so you dont have to suffer with the dreadful nausea that many of us are so unfortunately familiar with..... take care jacquie and hang in there. angela.

thanks all for your replies. my geneticist actually called me monday morning and told me that she spoke with two docs who are very interested in my case, that i definitely have EDS/hypermobility (scored 8 out of 9) and that the skin biospy wouldnt prove or disprove a diagnosis of eds, but like you all have said, it is based on clinical assessment == so i asked her again "so do i definitely have eds" and she said i did and in fact, i could very well have vascular involvement after consulting with these two other docs, considering my mom has aortic dilation with no known cause and for other med family factors. she said she wants me to have an annual cervical MRI (because of very possible subluxation of my neck) -- she was so crazy obsessed with my neck for some reason and how far i could rotate it (i dont know why she thought it was so significant, personally i didnt think i could rotate my neck THAT much, to the point that she kept asking me if i had ever broken it).... .....she also said she wants to continue to monitor my aortic root via echo annually because that is a big problem that can occur in eds -- is this with just any type of eds that aortic dilation can occur or is it more specifically with vascular eds??? so sounds like i have eds......and she sounds all excited about this, that there is a link here with eds and pots.......hope i get some even further answers as we go along with this......she is going to have my mom and sis and me go through some genetic blood tests to see what we can see with genetic mutations =- she said it is more the way to go than to just do a skin punch..... do you guys know if insurance pays for skin punch? this geneticist said they do not.......

okay, this didnt work! i was trying to set up a poll for symptom rating -- how limited you feel with your symptoms... OH WELL!

just wondering...

hey jacquie, did you get any results back yet from your gastric emptying study?

hey stacey, sorry to hear about your experience with the doc today. it is SO obvious when they dont review your chart ahead of time, i dont know why they think they can pull that crapola and not expect that we wont pick up on it. drives me nuts. so sorry it was such a tough day. two questions, when you say the betas dont work for you, do you mean they cause you symptoms or they dont control your HR or make you feel worse? also, what are your HR's standing? hope you have an easier time with your next appt and that someone actually REVIEWS your records FIRST before you see them instead of "wing it" on the spot. i feel your frustrations....

hey luckychrm, checking up on you to see how you're doing? did you find out anything further with your biopsy/results of your CT in regards to that mass they saw?? i hope you're okay. please let us know how you're doing. angela.

LThomas, they are most certainly looking for as many subjects as possible. i would contact Beth Israel about participating....i'm 100% sure they will take you. i am good friends with the research assistant of the POTS research and he just told me a couple days ago that they are currently trying to round up a bunch of subjects for their study......

hey nina, i think you're right -- that is, perhaps why she really thinks there is EDS going on -- because i have more than just hypermobile joints, but also have ortho intolerance, blood pooling, GI problems, ah the list goes on.......