cardiactec

I know that a lot of people with POTS/dysautonomia have difficulty when they first get rolling in the morning, particularly when first getting out of bed.....with me though, I do okay when I first get out of bed and while up for the first hour or so....I start getting really POTSY feeling after I take a shower and from then on, the rest of the day is shaky ground. Does everyone here always get symptomatic when they first get out of bed or is there a delayed reaction/response? what is your experience with symptoms as to when they occur - when they first start to bother you -- getting out of bed first thing? after you're up for a couple minutes/hours? after showering? after eating breakfast? in the afternoon? etc?

HAPPY BIRTHDAY!!! -- SENDING THE B-DAY CARD ACROSS SEA VIA MAINE LOBSTER!

Hey Amy, Of course your welcome here! I think there are probably some on this forum that also have both POTS/autonomic dysfunction and anxiety and/or panic disorder. ..I think the more you start to realize WHAT YOU THINK, or KNOW, could potentially be going on with you and aim to address such problems, the better you'll start feeling overall. whether pots, anxiety, or both, this life is tough huh! ...but glad we have each other through it all! take care. cardiactec.

I second sophia. in other words, i think sometimes the best person to help sort out what could potentially be the underlying problem is the "doctor" right inside of you -- the patient, i believe always knows their body better than doctors do, so perhaps if you THINK it is anxiety as the underlying problem than perhaps that is what it is .......sometimes though it is difficult to sort these kinds of things out though because there are so many conditions that mimic OTHER conditions .....and anxiety sensations can be a symptom OF POTS, so, hard to sort out..... ...........I think there's a huge difference between "mental" or "thought" triggered anxiety and "body" triggered anxiety......with pots, i think the autonomic dysregulation brings on "body type sensations" of anxiety, but there isnt an associated thought process or mental component that triggers or starts such an event/symptoms..........with anxiety, generally there is something that provokes a thought process to trigger the anxious feelings -- ie: being scared of spiders, seeing a spider, psychologically processing that spider, thinking of your fears related to that spider, and thus causing you to go into panic mode. i think it is different with pots in that you dont think "oh im standing up, that is scary, getting anxious about it,etc. generally standing up isnt a "scary thought" to trigger thought provoking anxiety, atleast not for me ....i can see though how with some people, especially those that pass out, could get scared of standing up or prolonged standing, because of the sensations involved with passing out or feeling like your going to pass out .....once again, not necesarily easy stuff sometimes to sort out.... once again, i think the best person sometimes to try and sort out what the real issue is, and there COULD be many (POTS AND anxiety/panic disorder/etc) is YOU yourself. do you feel like you're constantly obsessing over this? do you feel yourself worrying about it alot ? does it make you anxious? are there many thought provoking anxiety related triggers in your life? are you consciously thinking about things that cause you a great deal of anxiety? once again, i second sophia and hope i'm not coming across as being rude or insensitive. i just want you to start feeling better. take care. angela.

I called at 11 and specifically gave them your name to try and put you in the slot so no one else could claim it until you called to confirm -- but they told me they had some sort of system that they go by, and had to follow.... sorry.... wish it could have worked for you.....

my input, i have seen patients with full blown anxiety/panic attacks with HR's that are super high -- have seen as high as 180 and that was their primary diagnoses after all testing to rule out other causes of anxiety/tachycardia/etc were evaluated. I think with a tilt, anxiety can interfere with results to cause false positives. .......but generally, i would think that initially for upright tilt, your HR would go high (for being anxious in regard to the techs/docs moving the table/looking more in depth into things, etc) and then after a couple minutes the HR would go down after you "got used to" the tilt/you being in upright position. I have seen patients get very nerved up for tilt's and have a blunted HR response during the first part of tilt (first two or three minutes) and then they calm down and their rates drop to normal, all while still in upright position.....if the test had not been carried out long enough, these patients could have easily been misdiagnosed with pots/autonomic dysfunction, but waiting a little bit, 20 mins, to see if they calm or HR drops, is a good tool -- because generally someone who is "just nervous" will calm down after several minutes, and so will their HR response to their nervousness............... i was told HR must remain above a 30 point increase (sustained) from the time of supine to upright tilt to make a diagnoses of pots...... i think i've read in blair grubbs literature that the way they distinguish pots from anxiety/panic, is not only through tilt table testing, but also through other types of diagnostics (bloodwork/catechol levels/etc)............he also said in literature that people with anxiety are easy generally to point out than those with pots, because people with pots generally feel crumby while upright and then feel better after they go supine (less anxiety, shaky, nausea,etc) but people with anxiety dont feel any reduction in symptoms they might be feeling whether upright or supine.

hey hun, you ARE NOT a bad christian. dont listen to those lies! that is horrible and i'm so sorry you got such verbal abuse. I'm a christian and have a hard time making church every sunday and being as involved with church because i'm so wiped out from pots....and it's not just "an excuse", it's REALITY and God understands the hardships we face. COMPLETELY, UNCONDITIONALLY. so sorry sweetheart you're going through all this. I pray the Lord lift you up and send people in your life that will uplift you and build you up, not tear you down. Ya know, alot of counselors offer sliding scales to people who cannot afford the normal fee's (which can get pretty pricey) and for people without insurance...I hope you can find someone that can help you deal with all that you're going through -- in a respectful and compassionate way. you deserve it and nothing less! be blessed and hang in there.

Hey there, I'm going to call them around 11am tomorrow to re-schedule. I dont think it would be too direct for you to give them that date/time, or I could just give them your first name when I call to cancel that appt, just to leave it for you (if they would be willing to hold it for you until you call/get in touch with them) ..... ? lol, they might get confused though since your first name is also ANGELA! hahaha!

hey all, I have to reschedule my appointment with blair grubb - it is for dec. 20th at 9:30am. I will be rescheduling it sometime this upcoming week (probably tomorrow). just wanted to give the heads up to anyone who is trying to get in sooner to see him because this date will be open....... hopefully this helps someone out. cardiactec.

hey there, i am only 25 - and only weigh 122 at 5'8' and i have pretty bad cellulite on my thighs and rear end as well! .....i hate it. ...i just recently started trying a product by nivea, a cream, to try and reduce the appearance of the cellulite. it says on the bottle that you should notice results in two to four weeks, but i have used it now for three weeks and havent really seen a change........ i think it's probably just "normal" women problems, but sure doesnt feel like it when you are so young and arent overweight... hope you find something that helps! good luck. cardiactec.

I found out before I ever went to mayo, or scheduled with mayo, that an HMO plan would not be covered with mayo -- but that if i got under a different insurance plan, that i did not even need a referral. i ended up switching my HMO plan (which you always need a referral wherever you go with this type of plan) to a POS or PPO plan -- this type of plan allowed me and still allows me to go see whomever I want, without even having to get my PCP or any of my other docs involved. this is obviously dependent upon your type of insurance and with that insurance, if you have such a plan to choose from. i know with my new job i am getting in a couple weeks, that i dont have such an option -- it's either in network or out of network and needs referral either way, no special plan. good luck.

stress CAN AND DOES do a lot on the body. I know for me, my family has been going through a lot recently and this has added problems to me feeling/being more symptomatic. good luck with you and going back to work if you choose to do so! I bet you can do it! take it slow - ease your way into it, start part time and see how you do .... be blessed. cardiactec.

they totally cannot do that! You could sue that for that, if they specficially said they were letting you go because you fainted. personally, i would look into getting work at mercy hospital, MUCH MUCH more respectful over there! so sorry you're going through this........BUT, that being said, cleaning patient rooms I would think would be some grueling on you and would look into a job that doesnt require so much bending, squatting, standing -- things that trigger POTS and syncopal events for people who are prone to it.

I dont know what doc you saw before, but i see you are from maine -- and right around portland area../..i would highly recommend Andrew Corsello with cardiovascular consultants -- in scarborough -- 207-885-9905. this is the electrophysiologist i have seen for the past six years and he is VERY SMART. who is the doc you are currently seeing? as for your questions, yeah, i think you could have pots -- again -- from your flu viruses you had. BUT, perhaps you have something else as well -- maybe PSVT or something, a "true" dysrrhythmia, not from autonomic dysfunction. anyway, PM me if you want -- i think we live pretty close to one another! and actually may have spoken before via the net ?? your name rings a bell. good luck to you and chat later! cardiactec.

to be honest with you, I personally did not find mayo clinic all that great - I was quite despondent actually after i left mayo clinic, because i didnt feel they really did anything to help me.... i know there are people here that have probably been helped by mayo, but in my opinion, it's not worth the tears. i think you'd find more help/insight in going to blair grubb, but once again, this is just my experience/opinion. also, i did not know that mayo clinic was allowed to reject patients?? or any medical facility for that matter........strange.... take care and dont give up girl, you'll get the help you need. look into blair grubb. cardiactec.

Dari, so sorry you are going through all this.....I pray God give you wisdom in what to communicate to both your congregation and others you come in contact with who "doubt" your illness. you have an ever present help in time of need, and He loves you -- and though people, yes, even christians unfortunately (we're not perfect) may doubt you or judge you, God will always uplift you, hold you, and believe you and IN you. This life is tough, but we are more than conquerers - be blessed. cardiactec.

lol, morgan, had to laugh when you talked about working, and waiting/watching the monitor to see if a patient hits the 30 seconds or more mark for them to take it seriously and if it didnt last 30 secs, have an "oh well no biggie" attitude. doesnt make much sense, and the way you put it, it REALLY sounds ridiculous huh! i had always been told, while first in training (four years ago) that VT was no light thing, to take it VERY seriously and NOT just to sit there and wait/watch for that 30 second or longer marker to do something about it. yeah, the nonsustained/sustained thing is fairly new i believe. I often question WPW or some other funky condition.....ever heard of this condition --> Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) ??? I JUST stumbled upon it a couple days ago and though, as far as WE know, i have JUST recently, over the past year or so, started with these "events", this was nothing that was going on during my childhood days, so .....it might be a far cry from what the problem is, but, interesting to say the least -- more because my electrophysiologist is relating the VT to excessive catechol's. ..... nina, no, havent seen blair grubb yet -- in december - and i'm itching to see what he'll say...........though if havefaitherin says that he lumped in her VT episodes to autonomic problems, than he'll probably say the same about me ......havefaitherin, did you ever push for EP with blair grubb?

hey flop, yes that is what classifies sustained VT vs. nonsustained. under 30 seconds is "nonsustained" and over 30 seconds, whether or not it terminates on its own, is considered sustained VT. I am totally with you flop when you say that if you had VT documented with you, that you'd want something done about it..... -- even though IT IS nonsustained in my case, i would think it could still pose a chance for it becoming sustained...... Never in my wildest dreams had I thought the rhythm that was going on was ventricular in origin.......thought it was a-flutter or something........I mean, I know it is very normal for many many many people to have ectopy (SINGLE PVC's and PAC's) but it IS NOT, as far as I know, common, or a "normal" thing for the majority of the population to have couplets, triplets, or more ectopic ventricular beats in a row -- especially when it is polymorphic (meaning electrical activity occurring at many different sites in the lower chambers of the heart, the ventricles, for those who arent familiar with the term). I was told that monomorphic VT (meaning the rhythm is coming from one spot basically in the ventricles) is far less serious than polymorphic because monomorphic VT can be better controlled or terminated .......the rhythm I went into that we caught, though very short lived (I believe it was a four beat run) was polymorphic, not monomorphic - so a little more concerning. I'd like to pursue EP study but I think my cardio is very concerned with the underlying POTS diagnoses as being the potential "cause for everything" ....that is what is so tough about having POTS or any type of chronic condition that isnt fully understood, because it seems like everything just gets blamed on POTS....and it becomes harder for docs to investigate or draw their attention to something ELSE that could potentially be going on that IS NOT pots, or IS NOT autonomic dysfunction, so it can be properly addressed.

mightymouse, generally a sinus tachy isnt as "forceful" feeling as V tach. V tach produces a more prominent sensation since the rhythm is coming from the ventricles, which are much bigger and bulkier than the atria (where sinus tach comes from)..... ...there are people that dont even know they are in V tach, so it all depends on how sensitive you are to the rhythm, also if it is a sustained rhythm (which tends to cause a drop out of BP) or nonsustained (which is short lived and generally doesnt cause hemodynamic collapse, doesnt drop your pressure out)....... also, sinus tach usually is a gradual onset offset rhythm disturbance and the sensation tends to come on more gradually, with Vtach it is very spontaneous (at least with me) and VERY abrupt - so you literally go from feeling absolutely nothing to WHAM, this hard thunking type feeling either in your chest or neck (with me, it's my neck) .........and then you feel it terminate as quickly as it came on .....with me, and with sinus tach and how it presents in general, it is a gradual onset and gradual offset -- and you can feel the rhythm subsided, slowly, gradually and it doesnt start or stop abruptly -- but slowly increase and decreases. It's hard to say how you'd feel or how symptoms might differeniate between a sinus tach and v tach, because everyone is so different in how sensitive they are to specific rhythm disturbance. morgan, EXCELLENT job at explaining everything. lol, sometimes i just get so wrapped up in the lingo, cuz i talk it every day, it just become "normal" talk to me and i forget that it is actually quite confusing talk to people not working in medicine! LOL. sorry firewoman! morgan said everything to the T correctly and I couldnt have said it any better.

hey morgan, i have heard the same about SOME types of vtach -- which is a first for me in my four years of being a cardiac tech. though some types of VT quickly can progress to VFib, which is lethal so...... i think it depends on what type -- there is sustained, nonsustained, the long QT type of VT, brugada syndrome which triggers VT, monomorphic and/or polymorphic, WPW syndrome which can cause VT w/ underling afib to boot....the list really goes on and on......and the type is also dependent upon whether or not the person has structural heart disease/coronary artery disease/post-MI -- dependent on underlying pathologic states as compared to the patient with a structurally normal heart in regard to therapy and/or intervention and how to proceed with a VT patient. it also has a lot to do with symptomology -- ie: is the patient passing out left and right from it, hemodynamically compromised, etc..... with me, of course, other than MVP/TVP, and and measly PFO, I have no underlying heart disease or structural defect or CAD.........and on top of that it was nonsustained VT, so i can see why he's not too frightened with what was caught, or that keen or jumpy to move into an EP study right off the bat..... my QTc is normal. but still, just makes me wonder if this is what i'm feeling for one to two minutes every five weeks or so -- which causes me to get severely symptomatic, much much more than the pots symptoms. hey dari, thanks for your support/concern. yes, i hope some things get sorted out with seeing dr.grubb as well.....until then, more waiting. you definitely learn PATIENCE with chronic illness! :oP

So finally caught "the rhythm" that i have been feeling for awhile now that i KNEW WAS NOT POTS/sinus tach. turned out to be a nonsustained polymorphic ventricular tachycardia......my cardio said he is STILL hesitant though at this time to do an EP study because he feels that the ventricular tachy is NOT from conduction abnormality but from autonomic troubles??!?!?!?!??!?!?! argh!!!!!!!!!!!!!!!! I actually caught the rhythm while at work - it was pretty short lived but caught the "remains" of it anyway......the rhythm started after I sat down, thus my cardio thinks that excess catecholamine release and postural venous instability is contributing to the ventricular tachy, which in turn is part of the autonomic dysfunction. I am baffled at this point that yet EVEN AFTER catching this rhythm, that my cardio is still saying that he feels it is connected to autonomic problems??????? ANYONE HERE EVER GO INTO V-TACH AND HAVE BEEN TOLD IT IS/WAS FROM AUTONOMIC DYSFUNCTION??????? my cardio says an EP study would be considered but that even if they did induce this rhythm and could ablate it, i'd still be left with pots and pots symptoms.......i really question sometimes how much the "symptoms" i get are related to POTS OR are from another rhythm disturbance, like the one we just caught! ....... my cardio really isnt willing to do anything until i see dr.grubb in december to see what he says. in the meantime though, my records have been faxed to a boston hospital and out to a NY hospital to docs who specialize in pots and BOTH facilities have said that they have never seen a POTS patient who goes into nonsustained v-tach with position change..... just thought I'd share......

beta blocker , beta blocker, and MORE beta blocker!

I have an interview friday for a position that will further my career a bit!! I've been waiting a year for an opportunity like this to come around and am so excited that I at least have an interview in place! woohoo! so psyched! WISH ME LUCK!!!

ooops, meant minocycline!

I have had terrible itching spells over the past four years....finally i saw a doc about it ......it literally feels like things are crawling on me -- my back, my neck, my arms, my torso......thankfully, to their knowledge, they cant see anything crawling - yuck. but they have recently put me on meclizine, an antibiotic....i've been on it for almost two weeks now and see some improvement with it..... not sure if this is related to what you're going through, but i can certainly relate to you being up in the night from it -- this is when it's the worst for me - and benedryl never works to take away the insane itching! hope you find relief soon. cardiactec.