cardiactec

hi julie, yes, i have an extremely high HR, have been diagnoed with POTS, but never diagnosed with NMH. my tilt, about 5 of them over the past 5 years, have all been very positive for POTS but not for NMH/syncope.........i never have had problems like this out of 6 years in dealing with autonomic dysfunction.....it amazes me that my BP, even with .2mg florief a day, is still causing my pressure to drop out and causing me to pass out ..............this is very odd for me, as i do not have blood volume problems to begin with (was check with that thermodilution something or other green test) and was found to be "normal volume".....so the reasoning behind me taking florinef i'm not too sure with to begin with, perhaps it has some other mechanisms to help people with syncope who are normal volume??? ya know, i have been wondering why my cardio hasnt contacted my neuro instead of ME playing the middle man here........i did my part with the last episode by letting everyone know what happened/how i was feeling/etc and everyone kinda just tossed their hands up and said "do this" or "Try this"....not once did ANY of them consult with one another about what had happened, or what the appropriate thing to do would be -- instead i heard both "go off florinef" and "stay on florinef". i love that everyone is in agreement over what to do! sorry guys, just frustrated and not really knowing WHAT to do. about today, i just notified my PCP via email....figured nobody would do anything anyway, so just emailed him and let him know what happened...........i'm not going to even bother calling my docs anymore, telling them i'm passing out, etc, because nobody is in agreement of what to do anyway....just seems like a big guessing game with what to do/not to do........ thanks for all your thoughts and prayers... Cardiactec.

Rachel, thanks for your concern...... i am feeling very fatigued.........and am at work! thankfully only for a four hour shift!

Not sure what is up............I'm just really sick of it.........thankfully though it has happened in the comfort of my home and not when at work in front of my patients!

hey mom4cem, thanks for your concern/care....... i saw my PCP last week........this situation is a little complicated in that my doc (neuro) put me on .3 mg/day florinef about two months ago for "presyncopal spells" but not actually ever passing out.........while bieng on florinef, the prodrome has been much for instantaneous, instead of gradual -- though once again, not actually ever passing out.........my neuro didnt like the sound of such an instant feeling of blackout, instead of more gradual effect as it was before going on florinef..............so a couple weeks ago, he told me to slowly titrate off the florinef from .3 to .2 and then wait 5 days and go down to .1 and then wait 5 days and just go off of it...........i waited 5 days on .2mg a few weeks ago, on the fifth day i was going to cut it to .1mg and on that day i passed out............which then my cardio told me to go back up to .3 of the florinef and my neuro said he didnt like the florinef altogether and told me to slowly start going off of it! ugh...........so this time around, a week and a half ago, he told me to do .3 to .2 to .3 to .2 ever other day for a week and then just do .2 every day for a week and then switch between .2 to .1 for a week, then for a week do .1 every day, and then go off of it.............i had been on .2 for about three days straight, not jumping back and forth, every day between .3 and .2................and then this happened this morning...............................ya know, my PCP said he doesnt believe that is just coincidence that this is occuring with playing around with florinef...............i think i agree....i think this is more playing around with meds that is causing this to happen than autonomic dysfunction................my cardio disagrees and thinks it's auto dys.........................who knows WHAT it is that is causing this, but the more obvious culprit here is the florinef.................i just wish someone could tell me auto dys or florinef or what! as for pushing myself, i havent really done anything too different. been doing the same stuff................

Well this morning I almost passed out again....I was able to go supine before an actual total blackout.... .....I have had presyncopal events many times before and it has felt very very different from what occurred this morning and when I actually did pass out a couple weeks ago.....Before these two events all i felt for prodrome was nausea, weak, tremor, a little light-headed........these two events are very different in that they manifested by a very sudden sensation in my chest of my heart rate plummeting out. this is how i now distinguish between just "feeling" pre-syncopal and not actually passing out with an actual imminent impending blackout. I wonder what is up with all this!!!!! so frustrated and ill feeling right now............. a very upset, Cardiactec.

Hi there, A couple things. your doc is right in that atrial flutter and/or heart block are NOT a part of POTS. POTS is black and white, a sinus mechanism - a sinus tachycardia, which, though annoying, is a ''variant'' of normal in regards to a ''true'' arrhythmia problem and something that generally can be controlled without EP studies or further EP investigation. you talk about two pathways they found and that they didnt ablate either one......usually two pathways that have two different mechanisms : two different conductiion velocities (they both pass electrical impulses differently down the heart, one slowly and one quickly) and two different refractory periods (the time alloted for the heart cells to repolarize or "relax"). this, of course is just one "set up" for electrical disturbance that can occur.....as for "overactive cells", not sure what the doc was referencing there - if just talking about increased sympathetic activation (due to pots) or what -- generally if there are two pathways that they find, that are connected together with two different conduction and refractory periods that they can stimulate the heart and those pathways to induce a tachycardia that IS NOT a sinus tachycardia (like with pots), they ablate the "slow" pathway in order for ALL the impulses to just be directed down ONE pathway and not get caught up in a second pathway, in short, causing the tachycardia........but since you said the tachy wasnt coming from or being redirected up the second pathway, it sounds like he did the right thing with not ablating..... ablations are not recommended for POTS patients and i'm not necessarily sure what they would do in your situation, since you have both features of POTS and a definite diagnoses of primary rhythm disturbance. atrial flutter is something that can easily be controlled with ablation, ususally there is a 97% success rate at eliminating the flutter/fib via ablation - plus, on top of that, permanent med intake such as with anti-coagulants, is not needed when the flutter/fib is ablated. are you chronically in flutter or is it intermittent? the brady you describe after you eat, have they documented or caught in on a holter or event? a rate of 30 is pretty slow....you mentioned their findings of "heart block" and i wonder if you are referring to the heart block when you talk about you bradying out after eating or if this is just a very slow sinus brady with no block caused from increased parasympathetic tone and not necessarily conduction disease...............there are a few different types of heart block - did they tell you which you had? there is first degree which is generally not a concern, second degree ("wenckebach", also referred to as mobitz type I) which is also not too concerning, mainly benign..........then there is second degree (Mobitz, also referred to mobitz type II) which IS concerning and can lead to COMPLETE or "3rd degree heart block".............for a second degree, type II or complete heart block temporary transcutaneous pacing is indicated until a permanent pacemaker can be implanted. you situation is complicated in that you have POTS (with sinus tachy), atrial flutter (which can be eliminated by ablation) and some sort of heart block that seemingly is causing you to be symptomatic (and generally is treated with a pacemaker depending on what type of block it is)......................when do you feel the worst? with the brady or with the tachy? sorry you're going through all of this.... i hope this helps some......... Angela. p.s. perhaps doctorguest, flop, or some of the others with experience here could chime in, see what they think also...and of course root everything back to your docs to say what they think is best for your situation. good luck

hey girl, you described how i feel during Tilt almost to a T -- legs hurting, weak, then bam - feels like you got hit with the flu all of a sudden. good job for hanging in there through 16+ minutes on the tilt....it's tough eh? i think i got to 22 minutes and was just about ready to ask for the puke bucket! no fun. yep, like doctorguest and maxine said, that is DEFINITE criteria for a POTS diagnoses. Take care. -Angela.

i think it's doctorGuest. thanks doctorguest. you are much appreciated here on the forum.

I didnt know Brent, but I am so sorry for your loss....

mkoven, sorry you're dealing with this....perhaps you have that stomach bug that is going around..............sounds like it could be enhanced parasympathetic tone, yes, as you said, from the vagus nerve.......it is fairly common for people, especially the elderly, to have syncopal episodes while going to the bathroom...........they call it "micturation syncope" (basically passing out with urinating, this is most common in middle aged men) and "defecation syncope" (passing out while "bearing down" to pass stool, common in any age range and both male and female).............they call these two types of syncope "situational syncope", occuring as a result of too much parasympathetic tone, increased vagal activation, which in turn causes one to pass out, or feel as if they are going to pass out..........bearing down is the same as performing a valsalva maneuver to slow HR but it also can drop out your BP....be careful not to strain much, even though i know you're trying to "fix" the problem with your stomach/gut......... hopefully you can avoid passing out and i hope you start feeling better. -Angela.

thank you to those that have been supportive in regards to my scary experience of passing out. i appreciate your understanding and care........it meas a lot as this has been tough on/for me. thankfully there has been no further episodes of passing out since last week....and let's hope things stay that way!

Thanks Nina for your post..I'm glad you can relate, even though it's not the answer I wanted to hear! This certainly is tough..........I think that this is a flareup of the gastroparesis as the nausea is starting to slowly die off. it always boggles me how much i can tolerate. i know for certain that if anyone else (those with just an acute onset of stomach flu who dont deal with chronic nausea) felt as nauseous as i did, they would have hurled everywhere! I think, fortunately AND unfortunately, i have somewhat grown accustomed to the terrible nausea sensation over the past six years in that, even though it ISNT very tolerable by no means and very uncomfortable, i can somewhat prevent any vomiting episodes. my body has adapted a little to the sensation, so it/i have some control over it.....

I had to cancel my whole work schedule out today, teaching and at the hospital, because I am severely nauseated. this drives me crazy because when my POTS/gastroparesis symptoms flare-up, the only way I can tell the difference between my stomach acting up because of THAT or a stomach bug is that in about 4 hours or so the nausea starts to subside -- and if it were a stomach bug, it usually lasts longer........either way it is a pain, because i have to call out of work since i wont know until like 5 hours passes if it is a stomach bug that is going to stick around for 24-48 hours or if it is gastroparesis/POTS that'll eventually subside after a few hours........ right now I am pretty miserable feeling, but not as bad as i felt before my class was supposed to start (i ended up telling my students that i couldnt teach today because i felt too sick -- i guess i didnt even have to tell them that though because they all said i looked as white as a ghost)........... does anyone else have this problem?? I CANT TELL THE DIFFERENCE until 4-5 hours pass and it really destroys many days for me.............since the stomach bug is going around, I didnt want to take the chance, stay out, and continue to get worse, so i just came home and got into my PJ's.................

Hi, doctorguest, you said "you stated that if one doesn't have a panic disorder and is prescribed an anti-anxiety medication by a doctor, that it can actually be more harmful than helpful. This is simply not true." anti-anxiety meds can be harmful in that they are HIGHLY addictive. that was what i was referring to in that they can do harm to someone who doesnt have panic disorder who is prescribed such a medication. I'm glad that SSRI can help with conditions other than depression/anxiety. I just personally wont take such a med for reasons already stated. you said, "It sounds like you found good doctors to work with now, so why is it so important to hide the fact that you're seeing a counselor to help you deal with a chronic illness?" Just because I dont want it in my medical records for potential future docs to question or be concerned with when it comes to my primary diagnoses of gastroparesis, EDS, POTS. obviously if i really felt there was such a terrible stigma that came with seeing a psychologist, i wouldnt have just told everyone on this forum that i see one! there is no shame in that. however, once again, I DO keep it out of the medical record because THERE ARE docs who are WAY TOO EAGER to call it a day in telling their patient that everything that they, as a doc, cant explain is from depression or anxiety....it's like their scape-goat and it makes me sick. anyway, thanks for your reply. this is all a matter of personal experience and i hope everyone understands that. I shouldnt of ever mentioned anything about SSRI, actually i was simply looking for support from the people i know understand this condition best, better than any doc/counselor. .........this post was merely to describe a first syncopal experience, and to explain my fear of the event and i'm sorry it led to all of this... no one should be misled here by seeking out treatment options, yes even SSRI, for their symptoms. please know that everything i said was based solely on some terrible experiences with past docs and not based on SSRI being a "bad medication".....

Hey Nina, I'm glad you have benefited from SSRI and glad to see you put docs in their place when they draw inaccurate conclusions about you being on an SSRI. .... perhaps if docs hadnt been so cruel to me 6 years ago by being so hurtful in accusing me of things i wasnt doing/experiencing, i would be willing to try SSRI to see if it helps. at this point in my life, i'm still having a hard time getting over how horrible an experience it was to be treated so poorly................maybe at some point down the road, i'll get over the experience enough to not let what others think effect me so much.....but for now, i am very cautious and leery. one day at a time.. Everyone has their own monsters to deal with....this just happens to be one of mine............ i never meant to hurt anyone by any comments made....

several things: you say, "I am sorry to say cardiactec that statements YOU are making widely contribute to the stigmas attached to mental illness and that truly saddens me. I hope you realize that anxiety, anorexia, and the others you mentioned ARE ALSO DISEASES like POTS, and perhaps doctors aren't ALL the "she must be depressed or anxious" diagnosers that you are implying, maybe they are trying their best to help someone with a hard case." i dont think i slammed anyone who deals with anxiety, depression, anorexia, etc at all....and if it came across that way i am sorry. and also, just for the record, i know very well that anxiety, depression, anorexia, drug use, are problems that stem from disease as well, just like pots, unfortunately people who have such diseases or problems are shunned by people in the medical field, and terribly, this has been MY experience working in the med field and i NEVER WISH to be treated like that, EVER, very sad...and i am completely sympathetic and heart broken for people that have to deal with the aftermath after having been YES PROPERLY DIAGNOSED with such a problem. actually, i have TOO MANY TIMES, spent MUCH TIME with patients who have been treated like crap from med personnel, after having them being PROPERLY diagnosed with pyschological problems/disturbances......actually, i worked doing some social work for awhile and it is sad to see how some of them are treated......so much in fact that THIS IS WHY I DONT WANT THERE TO BE ANY GRAY AREA of MY DOCS understanding of what is going on with me -- because i REFUSE to get treated how those that both DO IN FACT have such problems OR how those are treated that DONT HAVE those problems but are labelled that way anyway, labelled WRONGLY either for making what is BLACK AND WHITE more GRAY by HAVING DOCS THAT ARE NOT AUTO DYS DOCS, WHO DONT HAVE A CLUE ABOUT ANY OF THIS, see SSRI or counseling in the med file....................once again, been there, done that....... i was implying how i was treated, which was very very very very poorly and it made me very upset that docs would make such false accusations about such serious things -- such as drug abuse, anorexia........it wasnt fair to me to have to feel so sick and to not get any help for it, but to LITERALLY be shunned by certain medical personnel..........it was a place in my life, an experience, and a very negative one at that, that i do not wish to go through again......and because of that i wont give anyone even the slightest suspicion or entertain a second thought in ANY mind of any other problem OTHER than the REAL problem. you said "Please explain to me why all the top ANS docs in the WORLD prescribe these meds, do they really think we're all anxious and depressed? I think not, I think it's because what happens in our bodies happens to mirror what happens to people who have panic attacks. And even IF our physical ailments cause us to have depression or anxiety WHAT IS SO WRONG WITH THAT?" I never said that ANS docs were wrong to prescribe such a med, if they think it works, and if it does, than great. i was commenting on HOW DOCS THAT ARE NOT AUTO DYS DOCS - as i said, ER DOCS, some PCP's, etc, dont have a clue about what auto dys is and its pathology -- so when they read down a list of meds you are on and see SSRI, they assume one thing and one thing only.............once again, this gets back to being falsely accussed, being shunned, and on top of that having any chance for proper treatment from occuring...which leaves me feeling sick, not having the problem addressed, because people are quick to assume that it is just something else. this would be the same, even without a psychological diagnoses that they were giving. for example, if i KNEW i had a UTI but the doc was treating the problem as ulcerative colitis, my problem still remains. i seek counsel as well by the way, but once again I keep it out of my med record because too many docs, ONCE AGAIN, cant get their mind off the thought that if you take an SSRI or seek counsel that you must in fact just have psychological problems..................this is why my PCP, without be even saying ANY of this, has kept that out of my med file....because both he and i know quite well how unfortunately people draw conclusions that are very wrong.........all i want is to be taken seriously, and finally i have been, after countless years of going through tough times in being blamed for shoving my finger down my throat or doing drugs.....does this sound like something that YOU would want to be blamed for?? certainly not. you said "It actually makes me wonder from a psychological standpoint why some are so paranoid about what's in their medical record, and as I said just really sad that sick people attach stigmas to other sick people. " probably because they get treated like crap by docs who dont know better than to just write them off with psychological manifestation when the patients knows quite well that they are NOT SICK from psychological reasons, but from physiologic reasons. finally i have found some docs who believe this for me because they have actually PHYSIOLOGICALLY seen proof with various tests that something isnt right, and not it being PSYCHOLOGICAL. it has nothing to do with paranoia, but everything to do with keeping everything black and white and not graying the med record to some docs when they read "anti-depressant" or "anti-anxiety".....you even said yourself "what happens in our bodies happens to mirror what happens to people who have panic attacks." ...............some docs (and no, not ANS docs, just typical joe shmoe that we all have to be followed by (PCP, GYN,etc) are just so ignorant just to assume that pots and panic are the same thing, so why give them more suspicion by having them see "anti-anxiety" med or "anti-depressant" in your chart? also, medicine it too confusing to begin with (not a whole lot is understood about the human body) so why add to the gray area? i think the biggest part of ANY of our experience with auto dys has been confusion by docs as to what exactly is going on...........this is another reason i dont take SSRI - because it adds confusion/false ideas to docs, mainly in ways that they go about treating the underlying problem, who dont know much about POTS. if you dont have panic disorder and a doc prescribes you anti-anxiety meds, it can actually do you more harm than good. you said, "Cardiactec you have even said you fear the next time passing out, don't you find that to be similar to being anxious? My daughter has been passing out since she was 8, she has never stopped living life because she FEARS something that might not happen on any given day, and if she does pass out, it happens, she has POTS. " i do fear passing out again....this is a normal thing to feel with passing out as i have just come to learn personally, but NOT the/my primary etiology. if it didnt scare someone to pass out, than they wouldnt be normal. your daughter may also have gotten a grip or handle on how it FEELS to pass out if she has passed out since 8 yrs old. HOWEVER, this is the FIRST TIME from 6 years of dealing with auto dys that i have ever experienced passing out and i have every right to feel scared for it, and every bit of normalcy for feeling such feelings. by the way, just to shed some light on my fear of the experience, you make it sound like i have stopped living my life since passing out as you explained your daughter not being held back in life by her experience with passing out.............just to inform you, i worked a 12 hour shift yesterday, and yes was scared that i might pass out at work, but i did not NOT go to work because of the fear/anxiety...............so i HAVE NOT stopped living life because of it. please dont jump to conclusions so quickly when you dont see the entire picture. you said, "I am just so baffled that someone "who works in the medical field and knows how it works" would make such statements that are so negative to people who deal with depression and anxiety, as well as those who take those meds to help with their POTS." you missed my last comment to lois and i quote "i am glad the SSRI has helped you and i dont look down on anyone who takes SSRI whether for depression or something else that it seems to help with, i just personally have a problem with it -- seriously a bit scarred from all the docs who treated me so poorly before being properly diagnosed." to each his own.....but know that i have MUCH compassion and sympathy for those that both take SSRI for it's primary purpose AND for those that take it off label for perhaps some other way that it can benefit a person. you said, "I am shocked that YOU seem to be one of those who is NOT "POTS literate" if you believe they are "throwing anxiety and depression medications at any ailment they don't understand" since these medications are in studies to prove they work for POTS, AND the most "POTS literate" docs in the world prescribe them daily. " i am in the CARDIOLOGY field, not neurology field and have NEVER EVER said anything about being pots literate. personally i dont want to be literate to ANYTHING in neurology, it's just too confusing! to be honest, i dont think there ARE a whole lot of people who are TRULY pots literate or else none of us would be on this forum telling each other about how we dont feel well, or about passing out, or about feeling nauseous, dizzy, light-headed,etc.................i think a lot of the meds they utilize are based on process of elimination......welcome to the world of medicine.......if one med doesnt work, they try another, and another, and another......yep even "off label" meds. i dont accept that as part of my medical care and once again, to each his own........if it works for you, it works........i'd just assume do what i feel is best for me........... i'm sorry if i offended you in any way. this is all so very hard for all of us to go through, being labeled or not.............. i wish you well............ if you care to understand where i am coming from, i will post below something i wrote a few months ago about my experience with this...................it was a letter that my doc wanted me to write to him about "what pots means to me".....i didnt paste the whole letter, because it is fairly long.....but this will give you some insight of my journey..... --> take care. ================================================ You asked me to write you a letter regarding what POTS means to me. I must first start by explaining to you what POTS MEANT to me and presumably those that I sought for help for my symptoms, before it was ever recognized that my symptoms were all due to autonomic dysfunction... "Anorexia", "Eating disorder", "Depression", "Anxiety", and "Illicit drug use" - all false speculations, false ideas, and false allegations that somehow all had been deemed the causes of my unexplained symptoms and you ask, "What does POTS mean to you?" At first, it was a guilty verdict. It was supposedly something I could avoid, something I was told I could just "turn off" by thinking happy thoughts or taking prozac, something I could prevent if I supposedly stopped this inconceivable falsified notion that I was doing drugs or sticking my finger down my throat. Even after the diagnosis of POTS was made I was told by an ER physician that my heart rate of 220 was from illicit drug use and not to try and argue with him about his suspicion (the drug use too they also suspected the cause as to why I was so thin appearing.heh...if it wasn't an eating disorder to cause the weight loss/nausea post eating problem, it was from drug use). One time I was told to just "fess up" about using drugs so that the doctor's wouldn't have to go through the lengthy process of blood work to check for drugs in my system. Mind you, I didn't ask or initiate any cardiac workup for any tachycardic event because I never had/felt palpitations and yet still, this was my fault. A guilty charge was read as me being the cause for my symptoms. As fast as I was trying to run away from the horrors of my daily symptoms, even faster I had to run, making a detour from the place and people I thought would help to diagnose and treat whatever it was that was ailing me, ravaging the normalcy of what I knew life to be like before getting sick, only replacing it with captivity. Sick people seek a medical doctor for answers and treatment for their sickness, not a prosecutor to be read a guilty verdict because of their sickness. And you ask, "What does POTS mean to you? This is one of two letters I have written since dealing with POTS. My first letter I wrote to God, after two years of feeling so miserably sick, of doctor's entertaining crazy ideas of eating disorders and drug use as the cause for my nausea/other symptoms, my thin body habitus, and even the fact that I was very young and yup, even that I was also a woman (because young people don't get sick and all women are just hereditarily marked with a ''crazy'' gene. is this what they teach you in med school???). So there were three strikes against me: age, gender, and body habitus. These three pieces of evidence led to an easy prosecution and so it was, guilty as charged. I started writing my letter to God, explaining how I couldn't deal with how I was physically feeling anymore, that I couldn't deal with all of this being summed up as some "psychological" problem because I knew it wasn't, that I couldn't deal with nobody believing me in how I was feeling. I wrote out of desperation, a plea for either mercy from the symptoms I was having or for a revelation to be imparted on someone so that I could start getting some relief from my symptoms and possibly some answers to what was going on physiologically. Thankfully that first letter to God, written 4 years ago is followed today by a second letter, now finding after two years of needless suffering, that there are still good doctor's who care and intently listen to try and find the TRUE cause of what is ailing their patients and not to just write them off as psychiatric. I now know that even if I can't get complete relief of symptoms, I can get relief of the POTS triggered emotional roller coaster ride because there are doctor's who practice medicine above and beyond standard patient care. So a thanks, in advance, to you, Dr.-----, and the other's that acknowledge POTS as both a REAL and debilitating condition, willing to do all that can be done to make this journey an easier one to walk through. I couldn't imagine walking through this the way I had to four years ago, with people just pointing fingers at me, like this was all my fault. After getting the POTS diagnosis, there was at least some closure in knowing that I wouldn't be blamed for my symptoms but still, my limitations/symptoms took a toll on me emotionally, and still do. I have just recently allowed myself not to be fearful of showing my frustration or upset with my physical limitations or how I feel physically due to POTS. For a long time, I stripped myself of any 'down and out' emotion I was feeling due to how I was physically feeling from POTS. I was so scared and still am to some degree to allow any dismal emotion to show towards how upsetting it is to have to live with this chronic, physically limiting condition. I am scared to get upset over/about my POTS because at the beginning of all this, all was regarded as behavioral/psychological as the cause for my symptoms. I can't deny the thoughts that if I fortuitously showed one ounce of sadness or frustration from this condition to any medical personnel, that I'd be read the guilty verdict again, that this would once again be viewed as all emotional/behavioral distress, and that I'd be left to fend for myself. So for a long time, and even to some extent presently, I have a hard time letting people see how this condition effects me on an emotional level because the blame for all my symptoms at first was erroneously assumed just that, emotional/behavioral/psychological. So not only do I fight the physical limitations of POTS, but I feel as though I must fight off the emotional low's that are instigated by POTS flare-ups/symptoms for fear of someone saying "ah ha, she cried, so it must not be POTS but emotional/psychological distress". It's definitely more baggage than I should have to carry, to have to worry about once again, something that I am supposedly doing (self-induced vomiting/drugs) in being the etiology behind my symptoms. I think I was so devastated by how I was treated when nobody knew what was going on that it still effects how I choose to talk/discuss with people in how POTS effects me. Even to the lay-person, if you explain POTS to them as "autonomic NERVOUS system disorder", all they hear is NERVOUS and the primary symptom "fast hear beat". Immediately they think you are just a nervous, panic-stricken wreck. So you ask, "What is POTS to you"? It was at first, a postulated falsified identity of being a, anorexic drug addict, a guilty verdict. POTS, many days, feels like playing Russian roulette. I never know when the loaded bullet of debilitating symptoms will fire, or if just firing blanks. It means me having to decipher whether my plans for each particular day will cause a flare-up of symptoms or if no matter what it is I plan, somehow the loaded bullet full of symptoms will be triggered. Some days there is no warning. I will wake up feeling fine and the next minute, I'm nauseous, I'm weak, I'm tired, I'm dizzy. POTS is a constant game that I am forced to play. Unlike a board game where the game both begins and ends by a mutual understanding from each game participant, instead of me having any say, POTS is the determiner of when the symptoms both starts and ends. Every morning is a guessing game with how I will feel throughout the day and what event or activity might trigger my symptoms. Usually my days are set up according to how the POTS is behaving for each particular day. It becomes a sick and twisted game in discerning how to plan the day AROUND POTS and not WITH POTS, how to determine my physical capabilities for the day without having to recognize or be aware of what I might not be able to do or accomplish because of POTS. Do I move the game piece forward and gamble on the chance of feeling really sick? Do I move back to avoid being symptomatic? Do I move at all? I have come to find that in any of the three options in this crazy POTS game, that any option will eventually, at some point throughout my day, result in POTS symptoms not allowing me to pass go, going straight to jail, not collecting 200$, and missing my turn of rolling the dice with a second chance for a different outcome in life aside from feeling controlled by POTS symptoms! Sometimes I ask myself who is winning this game, am I or is POTS? POTS seems to have the upper hand. I have learned to play like a straight shooter by just playing the cards I have been dealt and hoping that my hand ends up being higher than the card hand of POTS. To once again capture the fullness of life, to not be cheated by symptoms, not to lose my turn in having the social opportunity of meeting someone, having children without sending my heart into a 500 beat tachyarrhythmia, work full-time with all it's physical demands, to sometimes be able to go go-go-go-go and not end up feeling sick from it, to ultimately conquer, win, and knock POTS off the game board of life! So you ask, "What is POTS to you?" - POTS is a head-trip board game that I must win! Life has greatly changed since POTS. It's always planning out the day for two, for me and for me with POTS. Some days I feel like I can escape POTS symptoms, to be my own entity, eliminating the feeling that POTS defines who I am and what I do. Other day's the POTS symptoms annoyingly goes with me, wherever I go with whatever I do - to work, to school, to social gatherings. These days must be analogous to caring for a child while ''on-the-go'' in having to pack up all the emergency anti-cry/anti-boredom essentials of a diaper bag stuffed full of toys, cherrio's, and coloring books to pre-occupy the child all while the guardian try's to accomplish what needs to be accomplished with their agenda. Planning for POTS when symptomatic is similar. I must carry the emergency anti-symptom essentials both physically in-hand and cognitively in-mind of things that will hush up and keep pre-occupied the easily tempered POTS symptoms while I try and accomplish and carry out my agenda without feeling symptomatic. Yup, these essentials to include, but not limited to, salt packets, bottle upon bottle of water, making sure that wherever I go there is somewhere to sit down if need be, anti-nausea meds so I don't puke on myself, beta blocker meds so my heart doesn't run off ahead of me, and compression stockings so I don't float away by the blood flood pooling in my legs. It's anything and everything to try and hush up and distract the annoying, screaming, life-altering and temper tantrum symptoms of POTS so I can have my life. So you ask, "What is POTS to you"? POTS, as you have learned thus far, is not only a falsified identity of being an anorexic drug addict and also a head trip board game, but also a full-time babysitting job.

hi lois, thanks for your reply..... i have had such a difficult time, before being PROPERLY diagnosed with pots, in docs who were far from POTS literate quickly trying to shove SSRI and anti-anxiety meds down my throat when i knew that wasnt the problem at all.....i think the most bothersome thing in going through all of this has been being falsely accused of doing drugs (i have a heart rate of 200 and even after being diagnosed with pots and had the documentation to prove it to an ER doc, he told me that i should just "fess up" to doing drugs so they didnt have to waste their time in running blood tests), being anorexic (i have gastroparesis and have a hard time eating because of it), being depressed (cuz YEAH i was pretty upset with having to deal with feeling orthostatic symptoms every day and at the time, with no explanation), being anxious....... i never want to go down that road again....as i said, call it pride, but i think i'd rather feel crappy than try and SSRI and see if it helps and then have people who ARENT pots literate nod their heads and say "yes yes, so you take an SSRI, she is just depressed"........i know all too well how the med field works, i work in it! ) you said, "I would also wonder what a POTS-literate doctor would think if you refused to try an SSRI to see if it helps with POTS." ..................i just spoke with my neuro after he mentioned trying an SSRI if i start passing out again after taking me off florinef and i told him my concerns of what i just mentioned above and he said "well i and others are very well aware that POTS/auto dys is the problem and not concerned at all with depression and/or psychological issues with you"..................i told him that was nice that they and others who are pots literate take me seriously, but that trips into the PCP's office, ER visits, and/or other docs visits with peopel who ARE NOT pots literate immediately see SSRI and then draw some pretty scary and off beat conclusions just by seeing that in your med file............my PCP has been pretty good overally, and at one point he wanted me to see a councelor just because iwas really have a hard time dealing with the pots flareups (not cuz he thought i was clinically depressed) and he was smart enough to tell me that he wouldnt put that (the seeing a councelor part) in my med record because even HE knows that people would speculate just from seeing that in the med file...............so i know it's not just me that thinks this way, but when a DOC says that to me, you know there is a problem with med personnel just writing everything off as psychiatric or seeing everything in that light, especially when seeing things like "SSRI" in your med file................... i am glad the SSRI has helped you and i dont look down on anyone who takes SSRI whether for depression or something else that it seems to help with, i just personally have a problem with it -- seriously a bit scarred from all the docs who treated me so poorly before being properly diagnosed.....ya know, it is really sad that there is so much anxiety, anorexia , depression, drug use, in the first place that the first thing that runs through a docs mind with ANY person they meet is just that........sad........ as for the three things you listed as possibilities of what could have happened with the faint episode, i have never had a problem in the morning, which is bizzarre i know since most pots patients have difficulty in the morning, when first getting out of bed....that is not a trigger for me, has never been actually..........more or less things like being at work and standing a lot, after getting out of the shower i feel gross, grocery shopping, standing up a lot in the kitchen to make a meal, etc, stuff like that............generally though, even though i dont have probs when getting out of bed, i tend to drink 12 oz of water before getting out of bed and taking my meds as well 15 mins before getting up...................so i dont think the episode had anything to do with that................not sure what it was caused from... thanks for your response.... HAPPY EASTER!

I very much agree with you tearose.........call it pride if you want, but i'd rather pass out than use an SSRI and be labelled as anxious or depressed. been there, done that, not going there again! as you have said, they use SSRI WAY TOO MUCH for things "OFF LABEL". my dad is on SSRI for LEG PAIN????? This was after countless tests to try and find out the root of the problem and to no avail........so they put him on an SSRI and guess what?? he still has leg pain .....hmm, wonder why?? I disagree with docs reasoning behind using SSRI when prescribing is clearly not for pyschological purposes - what the medication is PRIMARILY intended for. sometimes i wonder that when docs arent able to put the puzzle together to come up with a cause of their patients problem, that they just write the problem off as psychological in nature, that their patients are ''depressed'' ....its easier for some docs to do this than to admit that they dont know what's wrong/how to PROPERLY treat the UNDERLYING problem instead of throwing anti-anxiety meds/anti-depressents at them........and so they prescribe such meds as SSRI for things off label such as LEG PAIN, CFS, SYNCOPE, FIBROMYALGIA, ETC, because MOST probably just assume the underlying etiology of these ailments is psychological...........lots of docs hand out anti-depressants and/or anti-anxiety meds out like candy, which is sad to say the least...speaking of which, i think most have forgotten how addictive anti-anxiety meds can be??

yeah i had read that, but it didnt help me out much! thanks though! i was just wondering what SPECIFICALLY, like lupus or something, it actually checks for?

Hi all, I was checked for ganglionic antibody and it was negative. what does this actually CHECK FOR?? like specific disease? anyone know?

thanks so much for all your replies/concerns........i still having a hard time... janeyre, i started florinef about 2 months ago at .3mg's right off the bat to try and combat some pre-syncopal sensations i was getting........the florinef had helped to cut the number of those episodes but on the same token even though i was having fewer episodes, they were much more abrupt in nature and not so much gradual.........so i called the neuro and informed him of this and he said he wanted me to go off the florinef gradually..........so i started to do that on saturday (last weekend) to .2mg's a day instead of .3.........i had been on .2mg's saturday, sunday, monday, and tuesday with no problems - felt about the same........wednesday morning rolled around and i was giong to cut it down to .1 mgs (cuz the neuro told me every three days to cut it back another .1, but i hadnt because i was a littel concerned to do so)...........so anyway, that is when i passed out = wednesday..............i spoke with the neuro and told him what had happened and he said he didnt feel the syncopal episode had anything to do with cutting back florinef and that he wanted me to slowly, ONCE AGAIN, go off of it! ugh.................he said it didnt sound like florinef was helping me out much, which is kinda true........so he just wants to see how i do off of it....i told him of my concerns with doing this, and passing out again would NOT be cool, how really upset i have been over this, really traumatized by it to be honest.............he said he understood the concern but in order for him to properly help me and assess where i'm at, i need to come off the florinef......................so here we go folks..................................he said if i start passing out again he wants to try an SSRI....i REALLY REALLY REALLY dont want to be on an SSRI just because of the conclusions that people (yep, even medical personnel) who arent aware of your situation/medical problem draw from being on an SSRI -- i have already gone through the ordeal, before being diagnosed with auto dys, of being called "depressed", "anxious","anorexic", "on drugs" (cuz of my high HR).........etc....etc....etc.......so i'm not too KEEN on that idea.... i am just going to believe this was a fluke thing. i have had pots for 6 years with extreme tachy, and even the neuro said to me today that he was shocked i had gone this long without passing out with the rates i have..........so...hopefully that means it was a fluke and it wont happen again!

Hi all, well it's the day after passing out for the first time and i am really having a hard time still, both physically (exhausted) and mentally/emotionally.......... ..I have literally been scared to stand up and/or stand still since what happened yesterday with me passing out..........the experience has really traumatized me............i had no idea passing out was THIS extreme, that it felt so bad..... ......I have been crying basically all day because passing out yesterday is literally all i can think about and how scary it was to feel my HR so so so slow and forceful in my chest like that, feel so so SOB, such chest pain, so sweaty, so nauseous...........i am really struggling with this................ to those that pass out or have passed out, have you had such a hard time with it? the scariest part, the part that i just cant get out of my head was just how SUPER SLOW and forceful my heart rate was, how prominent the sensation in my chest, and how i STILL felt like passing out even after i was already lying flat................i dont want to go through that again and really pray it was a fluke thing........ i am still so so so tired physically and have been anxiety stricken all day because of the experience. i completely empathize and sympathize to all of you who have to deal with passing out on a regular basis. *HUGS*, *PEACE*, AND *ENDURANCE* to you all.

I am so sorry pat for such an awful experience. just reading your post broke my heart. i would have reacted the same as you......... i am surprised a neurosurgeon recommended him to you for treating POTS when it really seems like he didnt have much a clue about POTS by just checking your vitals only after a minute of standing.........did he take your pulse while standing? what "signs" of pots was he looking for?? HA, i'm sorry, but if he doesnt think nausea is part of POTS he TRUTHFULLY doesnt have a clue about pots/pots symptoms.......... so sorry for your terrible experience. .......I hope you find an EP doc that is more knowledgeable than this doc you just saw.... he said 'i cannot treat extreme cases of pots' ??? did he even bother to ask you what meds you are on? what meds you have tried?? he didnt even offer any suggestions to you? so sorry pat for such a rough and fruitless docs appt..... ( be uplifted though, there are docs out there that can help you.........just gotta search a little...

oh yeah, any of you that have passed out - i think one of the scariest things today going through this was 1. the feeling of my heart beating extremely slow and forceful ... but also when i passed out and came to, i had really bad chest pain and shortness of breath, along with the continued forceful feeling slow heart rate.....have any of you had this after passing out? i seriously thought i through a clot or something to the lungs because i was so short winded, so bradycardic, along with chest pain....thankfully it went away after 10 mins or so but so so scary...............

junctional tachy could be a possibility in my case....but you were referencing a junctional escape rhythm in your first post, and i know it's not that cuz with junctional escape you have a pretty slow rate........ junctional escape rhythms are pretty uncommon and many times stem from an acute inferior MI or in post cardiac surgery patients.....they certainly can be seen though with increased parasympathetic tone via stimulating a sinus arrest (too much parasympathetic tone to the sinus node, which causes either an atrial or junctional escape rhythm to pace the heart)... it definitely could be a junctional tachycardia though which is different than junctional escape in that a junctional tach is more of an irritable site of cardiac pacing cells more than an arrest/pause that occurs from too much parasympathetic input on the sinus node... i definitely think it's some sort of irritable ectopic foci ........only a monitor would be able to prove/disprove and sort out morphologically whether a junctional vs atrial tach. thanks for the site though!