cardiactec

thanks nina! na you dont sound like a broken record. thanks for the places where i can find info!

hey sonotec, i would LOVE to have someone to chat to via email about anything, our shared illness, life in general.....good friends are hard to come by, but i'd love to chat and become friends! drop me a line! my email is cardiac_tec@hotmail.com. chat with you later!

anyone been down to NY for dr.stewart's POTS research? if so, what type of testing was involved?

hey there joe, are they looking into marfan syndrome with you? i have not been diagnosed with any connective tissue problem, but the suspiscion is there.....my mother has a dilated aortic root and is on beta and does just fine (she doesnt have autonomic dysfunction/POTS though) ........they say her aortic root issue is linked to high BP but i am wondering if it's not from a connective tissue problem....anyway, just wondering what they were investigating with you. i havent heard of any link btwn marfan and POTS, but interestingly enough, i have heard of connections btwn EDS and pots. not sure why one connective tissue issue would be linked with pots but not another kind of connective tissue problem....

it could be viral. gastritis which occurs with stomach flu can also cause food to sit in your stomach for long periods of time because the GI tract and stomach lining in inflammed from the virus.....how do you feel today? do you still feel like vomiting/are vomiting? if it was a virus, i dont know if it would go away that quickly. it is so hard sometimes to tell whether or not you are "sick" on top of the general "sickness" that you are daily plagued with from auto dys.....

wow, if your tilt brought on your symptoms and even passing out, i am surprised that they refuted a diagnosis of autonomic dysfunction. what was your pressure? some docs only look at numbers (systolic pressure) and not symptoms. if they cant back up a criteria of a specific condition (such as a 20 point drop in pressure within a minute of being upright, hence the diagnosis of Neurocardiogenic syncope, at least i think that is the "criteria" for such a diagnosis), than sometimes they shy away with diagnosing a person with such a condition. but geez, if you are passing out, there's gotta be something going on! what did you heart rate do with the pressure during tilt table?

so so sorry to hear of such a horrible night you had. i think nausea and vomiting are by far the worst symptoms anyone could ever have. do you get more naueated at night or doing the day or does it matter? also, is your nausea and/or vomiting always instigated by the choking feeling?

how often are you passing out? has your bp ever been taken before or after you have passed out? what happened to you on the tilt test? did it provoke the symptoms you typically have?

hey there, sorry to hear of your symptoms....what tests did they run on you in april? what was the explanation they gave you as to why they dont think it's autonomic dysfunction?

hey mighty mouse, what do you mean "failed spinal surgery"? what happened? i dont know, i think sometimes that there is some sort of connective tissue factor with me. i can do a lot of the contortions, especially the one with rotating the thumb onto your wrist. i can lay my whole thumb entirely on my wrist. i also had a bunionectomy on my foot over a year ago and guess what, still hasnt healed. i always have legs/joint pains. actually during my "growth spurt" i remember/as well as my parents, me lying on my parents bed shaking, teeth chattering and all, because the pains were so unbearable. MVP is also a type of connective tissue issue. and my mom has a dilated aortic root. her cardio says it's just from high BP though and not connective tissue, so he doesnt draw any connection btwn my mom's condition with what i am going through. i asked my cardio once about EDS and he said "well you arent throwing your back out or anything"......does it really have to be THAT bad in order for them to investigate the possibility of EDS as a diagnosis?

just curious how you are symptomatically. i too have high norepi (either epi or norepi) while standing upright and also have high dopamine levels while upright. since there are so many different causes to pots, it is interesting investigating how people respond symptomatically and how specific symptoms can sometimes vary from patient to patient based on what is actually causing pots from individual to individual (such as hyperadrenergic state pots vs. peripheral neuropathy pots vs. norepi transporter deficiency pots, etc).....i dont get the dizzy/light-headed thing really, once in a great while. my BP is like 94/60 standing, but i really dont feel dizzy/lightheaded. .... sometimes i wonder if the people who have the higher heart rates compensate better from a higher cardiac output (blood being more quickly distributed as compared to a lesser output with a heart rate of say 120).....seems like a higher rate would be able to help correct fallen or fallING bp and so perhaps these people with higher rates (in general) dont feel as light-headed/dizzy. my heart rates are like 180-200 standing. but who knows, i cant speak for everyone and i'm sure there are people who have "higher than average" heart rates for the pots criteria who still feel very pre-syncopal/dizzy....just seems to click that a higher heart rate would be a "better" compensatory mechanism as compared to someone who has the "typical" 120 upright heart rate and whose BP starts to fall out. .....makes sense, less cardiac output from a "lower" tachy rate, less compensation to hold a stable pressure, therefore less effort from the heart to maintain pressure.....i'm sure this theory has been disproven.

hey kel, what was your docs reasoning behind putting you on levsin. i thought levsin was a antispasmodic? do you have GI problems? sometimes they use it for that, or for just muscle cramps in general. hmm. how low does your BP get? and how high does your heart rate climb? seems like the primary, ''first choice'' meds for POTS are midodrine and/or florinef (along with fluid increase and salt intake) and a low dose beta blocker like toprol xl or atenolol. depending on your rates and BP responses to orthostatic stress, i could only recommend meds that seem fitting to any POTS patient in general and not so specific to what "fits you". for example, some people have high adrenergic state pots and therefore have high rates and only minimal drop in BP and so they seem to do better with beta than those who suffer from fainting spells (since a lot of beta blockers tend to lower BP).......did they say you just had pots or that you had actual, true hypotension as well? hang in there. glad to know that you at least got a diagnoses. now that you have the diagnosis you can start to work on "what works for you" and find the appropriate med/s for your "type" of POTS/auto dysfunction.

yes, be careful with inderal all of you who are on it. i took it and was okay for about a month and then started getting terrible nausea spells, followed by white colored stools -- NOT a good sign. i discontinued the med shortly after the third or fourth occurance of white stool and terrible nausea and the white stool is no longer present and the nausea, though i have it from pots symptoms, it is NOTHING like what it was while i was on inderal. so watch out! your liver could be warning you from white colored stool that it does NOT like processing inderal! i just wanted all of you to watch out for that because i know dr. low usually uses it as a primary beta blocker in pots patients.

hey, to those of you diagnosed with EDS/hypermobility, how were you diagnosed? is there some sort of collagenous testing they do?

hey lthomas521, how were you diagnosed with the hyperadrenergic form of POTS? just curious cuz i think that is what they are investigating as the cause of my POTS. also, are you symptomatic? interesting article by the way..

hey there, i dont know you and i'm new to this site but i just wanted to take a couple minutes and pray for you and your husband, believing that through God your husband and you as well will be made whole.... Lord Jesus, I come before you tonight. I ask that you pour out your healing anointing over jeff and jan. father, i pray for a miraculous healing in jeff and jan's body. when all else seems to be failing, you never do. you are a friend in time of help. you are a sustainer. so God, i pray a sustaining hand to carry both jeff and jan through this trying time. you are the lifter of our head Lord and i ask that you lift jeff and jan from the weariness and worry of their circumstance and wrap them in your peace and love. give them sweet sleep tonight Lord, give wisdom and insight to the doctors that they visit tomorrow. I claim healing God, in both jeff and jan. that every cancer cell would be gone through your touch. healing is claimed, faith believing, in your name, amen. press on. i just couldnt pass up the opportunity to pray for you after reading what you two are facing. life is tough. it's a battle to be fought. i pray victory for you both over this battle. God bless.

interesting that you say POTS is a syndrome and not a disease. my EP always refers to it as a "multi-system disease".......actually gibbons at beth israel described it as being the same......i dont know, it is a strange "condition" for sure, whatever the etiology. i think the etiology (cause) is so broad, that perhaps for some it is disease and others a passing syndrome. the ones that walk away with the explanation and specific answer are the lucky ones.... thanks for the luck in my career! hey do any of your kids have pots? i know you said your son has MVP....does he also have tachycardia? hey ernie. wow. they let your friend in the lab during your tilt? or was it just a regular doc visit you were at? i cant believe they kept you upright with a heart rate of 250 and unconscious. what was your pressure during that time? did they say why they think you could have an actual conduction abnormality (SVT from a different origin other than sinus node?).... where are they doing the EP study on you? is dr grubb doing it?

i am 5'8' and at 125. i have always been thin though. i would LOVE to gain weight, i just think with the auto dys and tachy and high epi levels, it makes it very hard to gain weight because my metabolic rate is cranked.....

yes, that was weird with the nerve test. did they give you any feedback from the research study? what were your rates during the tilt. I HATED the mental stress test part! haha, oh my gosh, i stink at math! i literally had sweat beads DRIPPING off my face after that. and then later on in the study, bonyhay just said "we are going to do the mental stress test again" and just from him saying that shot my rates to like 135! and then of course with the tilt i was at 200 BPM! what were your rates on the tilt during the research study? were you really symptomatic?

HEY JACQUIE, yes, dr.bonyhay was great!! he seemed very enthusiastic about cracking the mystery for POTS! ) did he tell you anything about what he observed or found with the research he did on you? did you have jackson as bonyhay's assistant?? he was great also. awesome guys! are you participating in the "part one" of the study? i'm not even sure when it is...havent heard anything about it. i only saw freeman for like 2 minutes and that was the first time i ever went down to beth israel.

mom4cem, MVP is usually diagnosed from a parasternal view during an echo and may or may not "show up" as much from the other views echo techs aquire. so if they saw it, even if it was slight, than it was true MVP. i'd be prophylactic just to be on the safe side. i dont have much mitral regurg (trace) but have prolapse and the cardio from mayo said i need to be prophylactic even though the regurg isnt that much... yes, trace regurg is very normal, specifically for the pulmonic and tricuspid valve. a stress echo looks for a correlation btwn ekg changes that are consistent with how well all the walls of the myocardium are coming in, if they all come in concentrically or if one wall or part of a wall is sluggish (due to part of that wall not getting enough oxygen due to blockage in a coronary artery). a stress echo is a diagnostic tool to help prove or disprove existing coronary artery disease and would be seen with changes on ekg as the heart is stressed by walking/running on the treadmill and also would show on the post exercise pics during echo.....a regular transthoracic sometimes can pick up pre-existing coronary disease by seeing if the walls come in altogether or not, but a stress echo is better for determining this because pics are obtained before the heart is stressed (from treadmill exercise) and after the heart is stressed and also because the ekg will usually reveal changes as well during exercise... hey sonotec, sorry to hear about all your symptoms.. that must be tough... did the doc say what caused you to code out on the tilt?

HEY katherine, it would be very interesting to see if MVP could be "brought out" during a tilt table.......somebody should combine an echo study on patients with auto dys in supine and standing positions. i bet you a million the upright position causes the mitral valve to become floppy (since it is a connective, myxomatous tissue). so to answer the question if MVPs can show up on a TTT, the syndrome may show because the syndrome part of MVP implies of symptoms that are accompanied with a myxomatous mitral valve (or floppy valve). some people have MVP and dont have any symptoms, so they are just referred to as people with MVP. people that are symptomatic are referred to as people with MVP syndrome. in order to diagnose the prolapse part to the syndrome (or symptom part) an echo would have to be done during a tilt to look at the mitral valve....it is a strange concept to understand cuz you would think people with MVP who arent symptomatic would have the symptoms that people with pots or auto dys have.....or that all people with POTS would have MVP....and some dont......that is why some docs refute the link btwn POTS and MVP cuz some people have MVP and dont have POTS or auto dys and some people have MVP and do have pots or auto dys.........so the connection btwn the two lies on some grey line, nothing is black or white.......

hey carolyn, it is so good to hear that you have a similar type situation as me. i often have thought that the diagnosis of pots for me was wrong because everyone it seemed that i would talk to would tell me that they are always dizzy or always feel like passing out. i, VERY rarely feel dizzy. every so often i do, but it doesnt plague me on a daily basis, not even weekly, and sometimes i am fine throughout an entire month with no dizzy spells. i work at a hospital as an echo tec. i am trying to get into the EP lab to work as an EP specialist, but i tried several times just going into the cath lab with the lead they have to wear (yesterday was interesting) and i had a hard time with it. it was surprising to me, because like you, i can be fairly active and bike 5 miles and though feel pretty drained cuz my rates can STILL hit 170 even on beta (and this is flat surface biking, not mountain biking with steep terrain), i dont feel like passing out ..........but for some reason, standing in that cath lab yesterday with 10 pounds of lead on, i started to get light-headed and had to step out of the room.....hopefully i can adjust because my passion for electrophysiology is out of this world. i love it. so did they think you had IST because you werent symptomatic with dizziness and pre-syncopal spells? yeah my BP during the tilt at beth israel two months ago was 92/60. the pre-tilt it sat around 107/84. the doc said he could literally watch my BP fighting to maintain a normal state. the only thing i really felt was sweaty and a little SOB with my legs which felt like they were 10times too big.....interesting you mention surges of adrenaline, i can feel that sometimes when i stand up. it feels like every vessel is expanding in my body....wierd... can you feel your heart racing when you are sitting in the sun and your rates are 160? i think it is so wierd that i cant feel my heart racing.....only when it is over 190 can i start to feel it a little. the docs think it's because i have had this for awhile, maybe since a little kid, and i have just adjusted/compensated....... like you also, my resting, lying down, and most of the time sitting heart rates (unless i am in the heat) is around 80 ....normal. fatigue has probably been the biggest symptom i have. along with strange SOB feelings, like my diaphragm wont let me breathe correctly? it is wierd.

oh my gosh ernie! 250!!! were you standing up? does you BP plummit? how often does your rate spike like that? is it sinus tach? how long has it been going on?

thanks AJDVK for the welcome! wow, there seem to be a lot of you that have conduction abnormalities and not just autonomic dysregulation....how interesting.......so you had true SVT (not sinus in origin?) ....did you develop your syncope and POTS before or after your ablation?? geez. a pacer??? how old are you?? i think it is so funny, (i do it myself), when you say i now "only" get up to 150-170. we become so used to the high rates that 150-170 BPM becomes like a norm for us when the average person who sees that just about collapses to the floor because they know that this is a very high heart rate....... i just cant get over the conduction abnormalities that you guys have. wow. and how you later developed POTS or auto dysreg? were you diagnosed with pots before or after ablation? wow.... i have seen roy freeman and christopher gibbons at beth israel. i just went down for their research investigation into pots and saw istvan bonyhay (GREAT doc) and he was the one that just about jumped out of my skin when he saw my rates at 200 (in sinus mechanism!) while upright. he said he'd never seen rates so high in pots (being sinus).........and my legs also turned purple towards the end of the tilt but interestingly enough, i wasnt that symptomatic (thank god!). the day i left, which was the following day, i was pretty nauseous and ill feeling.... have you participated in their study at beth israel?