cardiactec

hey mom4cem, thanks for your message! yes, it is strange that you can have tachy just from sitting, doing nothing! it drives me crazy! i get tachy as high as 210 when not on beta blocker. I, like yourself, have very distinct looking P waves and for awhile they thought it was a type of "ectopic" ATRIAL tachycardia, meaning the tachycardia was originating in the atria, but not necessarily from the sinus node (the sinus node is IN the right atrium).........but, like i said, the docs used many techniques like valsalva, carotid massage, etc to see if the P waves changed at all during these manuevers and what the offset/onset of the tachycardia did, whether slowly slowing or abrupting stopping the tachy....... me not wanting to believe that i had a chronic condition, that they could just take me in and ablate it is all just denial in not wanting to accept the fact that i must live with a chronic issue like POTS.......ha, i STILL ask my electrophysiologist every time i see him if he is "SURE" this isnt an ectopic tachy that is just being stimulated by sympathetic overdrive and he reassures me every time that it is not, that it is POTS and that there is no ectopic rhythm involved.....i dont want to believe it cuz i know i have to keep putting up with it every day, whereas the patients i see on a daily basis that come in to the EP lab to get their tachy's fixed usually get it fixed and it STAYS fixed. makes me a little jealous... ...then there's the people that come through the E.R. doors that i do ekg's on who have a paroxysmal (sudden onset) ectopic type of tachycardia, the docs give them meds and boom, tachy is gone and taken care of. i did an ekg on this one woman once who was tachy at 170 and the doc gave her some meds to knock the rhythm back to normal sinus rhythm and afterwards the woman looked at me and said "i am so sick and tired of dealing with this". i asked her how long she had been dealing with it and how often she gets the tachy and she repsonded "i have had it over the past 5 years and the tachycardia i get about twice a year".............TWICE A YEAR!!!! oh man, i sympathized with her aloud as much as i could, but in my mind i was yelling at her for complaining about having to "DEAL" with the tachy just TWICE a year! i felt like saying "that is nothing, i deal with tachy that is much higher than yours EVERY DAY". i of course didnt say that, but i cant deny the fact that i tend to get a little frustrated or jealous when a patient comes through the doors that doesnt have POTS or some other form of the automatic mechanism tachy i was telling you about that docs cant just eliminate by ablation or give an injection to stop it for at least another year.........i still try and sympathize with the patient though cuz i understand their frustrations with medical problems.....but man, i'd love to just have to deal with a tachy two days out of the whole year, have docs take care of it with meds ACUTELY everytime, instead of having to deal with POTS that i have to take meds for every day, that isn't just a two day out of the year ordeal, but an EVERY DAY event. anytime i can try and help explain something to you and the rest of the gang, let me know. i dont know it all of course, but i will share/explain what i know....both from personal experience and from what i have learned through working in the EP/cardiac labs. have a wonderful day!

OH MY ACHING REAR END!!!!!!!!!!!! LITERALLY! THOSE OF YOU YET TO TRY ZELNORM, DONT!!!! I TOOK THE FIRST DOSE ABOUT 5 HOURS AGO AND I HAVE BEEN SITTING ON THE TOILET FOR THE PAST 2 HOURS!! (OBVIOUSLY NOT NOW)..............i am so mad. this med is ridiculous. i should have, instead of paying the co-pay of 35$ for it, just shoved it down the toilet with the GALLONS OF WATER THAT HAVE BEEN POURING OUT OF MY REAR END FOR THE PAST 2 HOURS! .........i called the GI doc on call and told him all about it. he said that a "normal" side effect for the med was "diarrhea". i told him this wasnt watery stool, but a full fledge niagra falls pouring out non-stop. he obviously agreed with me that this abnormally abnormal and to not take any more of it. and the saga continues... i dont even know why they prescribed such a med for me cuz zelnorm works for people with IBS who are constipated. it has some properties that help to promote motility in the stomach, but also in the colon. hence the reason why i have been going to the bathroom non stop for the past two hours!!!!!!!!! it is the only med they could try on me though cuz of the beta i am taking! this is a nightmare! onward with the nausea and if that wasnt worse enough, now niagra falls pouring out of my rear end!!!!!!!!!!!!! LITERALLY! i almost went to the E.R. cuz the fastest i could take in water orally, faster it was pouring out the other end! i think it has started to calm down now.......just feel really weak, really tired, really NAUSEOUS, really DEHYDRATED~! UGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

amby and maggs, thanks for the support! you all are great! HUGGGS to all of you. i'll let you all know how the zelnorm works. if any of you have ever tried zelnorm or been prescribed it for nausea/vomiting, let me know how you did with it/if it made things better for you. i am hoping this does SOMETHING to take the edge off.

hey all, well first, the med my doc prescribed was zelnorm (even though i am not taking it for IBS but for gastroparesis since i cant take the "typical" meds prescribed for gastroparesis cuz of the beta blocker i'm taking)...........anyway, SOMEONE screwed up along the way and i was just able to get the prescription filled for a co-pay of only 35$. thank GOD! i have tried zelnorm like 4 years ago when nausea was at it's worst for me but all i remember it doing was causing severe heartburn! but i am willing to give it a go again. back when they first prescribed zelnorm for me they hadnt run the GI motility study on me, so they concluded back then it was IBS. heh. NOT! try gastroparesis! argh! anyway, zelnorm didnt help back then, i am hoping it does now but from what i read, it is really a pro-motility med or does it just help prevent nausea? does anyone know? i'm not familiar or knowledgable in the GI meds, only cardiac! lol! hence the name cardiac-tec! lol!

just adding the comment that i meant to say triggered ACTIVITY, not triggered automaticity when referring to the two things (reentry tachy's and triggered activity, not automaticity) that can be brought in and ablation or study in an EP lab. so triggered ACTIVITY, not triggered automaticity, although somewhat similar, how they both are provoked and end are different (which a doc can easil determine). wha is seen in the tachy that occurs with autonomic dysfunction is neither reentry or triggered activity. it is an "automatic mechanism" tachycardia caused by increased sympathetic tone, which leads to increased automaticity (the firing rate of cardiac cells)...... just clarifying for you all. if it even helps! i feel like such a geek, but i love electrophysiology! woohoo! haha!

thanks to all of you for your words of encouragement and praise. i knew posting this letter here was the way to go because you all know exactly what i'm talking about . i have showed the letter to a couple people that i work with and they werent too sure what to say, i think most have been shocked that POTS effects me this much (they only see me 20 hours a week at work, they dont see me when i get out of work and crash HARD, even from just work 4 hour shifts sometimes)...........heh, one person said she thought i was a little too "dramatic" for the "prison" part of the letter. she is a wonderful person, really, but she doesnt understand what i have to deal with day in and day out. if she walked in my shoes, she would think a prison to not even be the place or word to compare to what is faced with a chronic illness, specifically for us autonomic dysfunction.

i'm with tanzanite on this. adrenal issues (like addisons disease) can cause you to crave salt. ...or it could be that you just crave salt! .....but i'd ask your doc if he/she thinks you should get some endocrine testing done.

it's been six years for me. started getting symptoms at age 19, i am now 24.

hey dayna, thanks for your message. it made me cry! but a good cry! it is nice to know i'm not alone. actually, five years ago, nausea was my primary and only symptom and it was HORRIBLE! it finally let up about 3 years ago, wasnt as bad and now i am back to where i started five years ago. just feels like i've made one big circle! i'm gonna give my cardio/GI docs a call tomorrow and hopefully they can be more quick to come to an agreement on some other med and call it in to the pharmacy, all before the offices closes at 5pm for the weekend! yeah right! we'll see if it happens! been there, done that! thanks so much for your message. made me feel better. thanks for your message. it is nice to have such wonderful support, especially from those who can relate. i have tried so many beta's...........atenolol, toprol, lopressor, inderal, etc,etc.........sotalol is the latest and greatest. seriously. it has done wonders to keep the rates down with minimal minimal side effects. all the others i have taken have just caused me more symptoms if anything and they didnt really take care of my rates.....the electrophysiologist is more concerned with getting the rates down from 220 and keeping them down and my GI doc is more concerned with making sure i dont feel like puking on myself every day and not dropping off weight that i dont have to lose..........it's obvious that their concerns for me lie within what field of medicine they are in! argh. actually my electrophysiologist has been good to try and consult with my GI doc about anti-nausea meds i might be able to take that dont conflict with my sotalol, but i think he just doesnt know what to do anymore to make things better.......ha, i sense his frustration as he does mine! i have great docs, i really do, but i'm just really tired of having to deal with all this........it is so tiring, on top of the already fatigue that POTS causes. double whammy. my electrophysiologist told me on the phone a couple days ago that if we had to, he'd take me off the sotalol, even though he doesnt want to cuz it would be a shame to go off it since it's worked so well with the heart rates, but if i have to, in order to have a better selection of meds to treat what REALLY aile's me through the day, than we'll do it. i told him i could deal with a heart rate of 200, but i CANNOT AND WILL NOT deal with nausea/vomiting. thanks for your message. it is nice to have such wonderful support, especially from those who can relate. i have tried so many beta's...........atenolol, toprol, lopressor, inderal, etc,etc.........sotalol is the latest and greatest. seriously. it has done wonders to keep the rates down with minimal minimal side effects. all the others i have taken have just caused me more symptoms if anything and they didnt really take care of my rates.....the electrophysiologist is more concerned with getting the rates down from 220 and keeping them down and my GI doc is more concerned with making sure i dont feel like puking on myself every day and not dropping off weight that i dont have to lose..........it's obvious that their concerns for me lie within what field of medicine they are in! argh. actually my electrophysiologist has been good to try and consult with my GI doc about anti-nausea meds i might be able to take that dont conflict with my sotalol, but i think he just doesnt know what to do anymore to make things better.......ha, i sense his frustration as he does mine! i have great docs, i really do, but i'm just really tired of having to deal with all this........it is so tiring, on top of the already fatigue that POTS causes. double whammy. my electrophysiologist told me on the phone a couple days ago that if we had to, he'd take me off the sotalol, even though he doesnt want to cuz it would be a shame to go off it since it's worked so well with the heart rates, but if i have to, in order to have a better selection of meds to treat what REALLY aile's me through the day, than we'll do it. i told him i could deal with a heart rate of 200, but i CANNOT AND WILL NOT deal with nausea/vomiting. thanks for your message. it is nice to have such wonderful support, especially from those who can relate. i have tried so many beta's...........atenolol, toprol, lopressor, inderal, etc,etc.........sotalol is the latest and greatest. seriously. it has done wonders to keep the rates down with minimal minimal side effects. all the others i have taken have just caused me more symptoms if anything and they didnt really take care of my rates.....the electrophysiologist is more concerned with getting the rates down from 220 and keeping them down and my GI doc is more concerned with making sure i dont feel like puking on myself every day and not dropping off weight that i dont have to lose..........it's obvious that their concerns for me lie within what field of medicine they are in! argh. actually my electrophysiologist has been good to try and consult with my GI doc about anti-nausea meds i might be able to take that dont conflict with my sotalol, but i think he just doesnt know what to do anymore to make things better.......ha, i sense his frustration as he does mine! i have great docs, i really do, but i'm just really tired of having to deal with all this........it is so tiring, on top of the already fatigue that POTS causes. double whammy. my electrophysiologist told me on the phone a couple days ago that if we had to, he'd take me off the sotalol, even though he doesnt want to cuz it would be a shame to go off it since it's worked so well with the heart rates, but if i have to, in order to have a better selection of meds to treat what REALLY aile's me through the day, than we'll do it. i told him i could deal with a heart rate of 200, but i CANNOT AND WILL NOT deal with nausea/vomiting. thanks for your message. it is nice to have such wonderful support, especially from those who can relate. i have tried so many beta's...........atenolol, toprol, lopressor, inderal, etc,etc.........sotalol is the latest and greatest. seriously. it has done wonders to keep the rates down with minimal minimal side effects. all the others i have taken have just caused me more symptoms if anything and they didnt really take care of my rates.....the electrophysiologist is more concerned with getting the rates down from 220 and keeping them down and my GI doc is more concerned with making sure i dont feel like puking on myself every day and not dropping off weight that i dont have to lose..........it's obvious that their concerns for me lie within what field of medicine they are in! argh. actually my electrophysiologist has been good to try and consult with my GI doc about anti-nausea meds i might be able to take that dont conflict with my sotalol, but i think he just doesnt know what to do anymore to make things better.......ha, i sense his frustration as he does mine! i have great docs, i really do, but i'm just really tired of having to deal with all this........it is so tiring, on top of the already fatigue that POTS causes. double whammy. my electrophysiologist told me on the phone a couple days ago that if we had to, he'd take me off the sotalol, even though he doesnt want to cuz it would be a shame to go off it since it's worked so well with the heart rates, but if i have to, in order to have a better selection of meds to treat what REALLY aile's me through the day, than we'll do it. i told him i could deal with a heart rate of 200, but i CANNOT AND WILL NOT deal with nausea/vomiting. oopps! i think i messed up that message! one was for dayna, the other for momtoguiliana! lol. sorry!

what your pressure when your heart rate was at 120 and dropped to 70?

no problem!

i have HAD IT WITH NAUSEA! i finally had my cardio get ahold of the GI doc to consult with him about what meds i can take for nausea, due to gastroparesis. i cant take most of the GI meds they use to treat nausea/motility issues because i am taking a potent beta blocker that can be fatal when combined with certain meds (most of which are anti-nausea meds!)............. so finally after waiting two whole weeks to get some relief with trying to have my docs come up with a game plan for what med i can take, the cardio finally said i could take zofran. heh. i just went to go pick it up and GUESS WHAT FOLKS?!?!?!? YEP YOU GOT IT. IT'S 180$ A MONTH!!!! i cant afford that! my insurance only picked up like 40$ of it. i asked the pharmacist why the insurance only covered a small percentage and they said it was because there are other meds that are similar to it that are cheaper! UGH! ALL OF WHICH I BET I CANT TAKE BECAUSE OF THE INTERFERANCE IT'LL CAUSE WITH MY BETA!!! i just sat outside crying cuz i am so upset that i have to go through yet another night with such terrible nausea!! i am dropping weight and i cant afford to lose any! i am only 115 at 5'8'!!! i seriously cant take this. i'd rather deal with a heart rate of 200 than a stomach that feels like propelling food out through my mouth every 5 seconds!!!!

Hi mom4cem, "automaticity" refers to the ability of cardiac cells to generate electrical impulses on their own, automatically. cardiac cells are the only cells within the body with this capability. with every cell there is an established electrical charge which propagates throughout the heart to other nearby cells (to cause them to help the muscle of the heart to contract). even though the cardiac cells have this function to work or start electrical impulses on their own, there are things that can alter automaticity....things to either enhance or depress the way the cells fire their electrical stimulus. the sinus node and the av node are richly supplied by nerve fibers of both sympathetic and parasympathetic activation moreso than anywhere else in the heart. if their is an abnormality with the autonomic nervous system (the autonomic nervous system is both composed of sympathetic and parasympathetic nervous system), than it can cause the automaticity of cells to "change" how they generate their electrical impulse to the rest of the heart. the sinus node (the pacemaker of the heart, where NORMALLY all electrical impulses begin in the heart) is richly supplied by sympathetic and parasympathetic fibers. for example, when their is enhanced sympathetic tone (too much catecholamine's in the blood, beta receptor problems, etc), fight or flight response is the kicks in - when this happens, for example if you get scared, sympathetic nerves are triggered that are sensed within the sinus node (where the fibers hang out) which in turn causes the shape of electrical action within the heart's cells to change, which causes a change in how those cells fire, in this case a faster firing rate - tachycardia)..........sorry if this is very confusing to follow, just trying to answer your question..... electrophysiologists are generally able to tell if this is the mechanism behind the tachycardia (or inthe case of parasympathetic fiber stimulation, a change in electrical "shape" within cardiac cells which causes the cells to fire very slowly)........ an altered automaticity "automatic" tachycardia can be differentiated from a reentrant or conduction abnormality tachycardia by several mechanisms. the most important being how the tachycardia starts and ends. if it starts and/or ends abruptly usually the tachycardia is most likely due from something other than altered automaticity responses. some tachycardia's though can mimic sinus tachycardia and usually docs can differentiate sinus tachy from other types of tachy by having patients perform maneuvers that activate sympathetic or parasympathetic nerve fibers (like valsalva maneuvers for example cause a parasympathetic activation which in turn causes the sa or av node to be stimulated and breaks the tachycardia.........how this tachycardia breaks (slowly decreasing in rate or abruptly decreasing in rate) usually helps to determine how and where the tachycardia originated, within sinus node or from another area in the heart and if it's mechanism is driven by enhanced automaticity (something to trigger the cardiac cells ability to increase or decrease in their automatic firing rate).....in the case of POTS, if the tachycardia is initiated by changing position it is most likely due to this enhanced automaticity because standing requires activation of the sympathetic nervous system (in EVERYONE, not just POTS patients)........unfortunately there is too much sympathetic nervous system activation in POTS patients, causing this altered automaticity. in normal people, the heart rate response to standing can be as high as 15-20 points because it triggers the sympathetic fibers in the sinus node to increase it's rate (it's automaticity) to help maintain or increase blood pressure so you dont pass out when you stand up. this mechanism is all messed up in people with autonomic dysfunction. ekg can give many clues in determining what the arrhythmia is and where in the heart the arrhythmia is occuring. usually for a sinus tachycardia we see a P wave (a hump) before every QRS (the spike) on ekg. if the P wave (the hump) looks like it originated in the sinus node, than we call is sinus tachycardia and docs work from there to determine what the cause of the sinus tachycardia is (usually from metabolic disturbances, fever, anxiety, increase autonomic/automaticity to the SA node, etc)........if the P wave is absent or doesnt necessarily look like it started in the sinus node, than this is when docs will try maneuvers such as valsalva's to see how the tachy stops (suddenly or slowly) or the the shape of the P wave changes on ekg during tilt table testing or valsalvas or carotid massages, etc. lastly altered automaticity to the cardiac cells in the sinus node can occur while sitting as well as standing... hope i didnt confuse the heck out of you! it is a very hard concept to grasp. the body is complex, what can i say! ha, i think we all know that anyway, because if it wasnt so complex, we'd all have answers to what is causing autonomic dysfunction!

Hi there Lori, I work in/with electrophysiology. i think you are referring to an ablation. ablation is set aside for people who have one of two types of electrical disturbances within conduction pathways, reentry circuits and triggered automaticity. without getting into the nitty gritty of what these two things actually mean, POTS doesnt fall into either of these two type of electrical disturbances, POTS/autonomic dysfunction is neither a reentry circuit or a type of triggered automaticity. POTS is what is typically referred to in electrophysiology as a type of ''automatic mechanism''. automatic mechanism's trigger heart rhythm disturbances and so the primary culprit is not the electrical properties in the heart itself. causes for these tachyarrythmia's (automatic mechanisms) are triggered from metabolic disturbances, drug toxicity, our lovely and favored (so being sarcastic) increases in autonomic tone (POTS, vagus nerve problems, pooling problems, excessive catecholamine, beta recetpor issues, etc) along with other things... ........an ablation would not fix the tachycardia in automatic mechanisms because POTS and other things that are classified under "automatic mechanisms" are the primary cause for the tachycardia, not an electrical conduction issue. ablation's only work for actual electrical conduction pathway abnormalities.....people who have ablations that have automatic mechanisms as the cause behind the tachycardia usually end up in worse shape symptomatically than before they had the ablation - because the primary problem hasnt been taken care of. the heart is actually the innocent by-stander here. i'd make sure with an electrophysiologist that it is 100% POTS and not an actual electrical conduction problem.

my PCP has been great over the past couple months, allowing me to go in and just sit to vent over this whole condition........he listens and cares deeply with what i tell him i go through, even if he doesnt understand it personally himself..........anyway, he had me write him a letter (havent given it to him yet, i just wrote it) about "what POTS means to me".............it is basically my story of what i have faced over the past 6 years................... for all of you, feeling like you are at the end of your rope, dont give up. try and tell your story, aloud and on paper, to anyone who will listen. it'll help to deal with the emotional aspects in dealing with autonomic dysfunction. i'd find a good doc, perhaps your PCP or a counselor, to be able to vent.....writing a letter is a good idea...........i tried to write this in a way that my doc could understand, through analogy................ let me know your feedback. i'm not completely finished with it yet (even though i'm up to like the 6th page!)....it's more like a novel than a letter! anyway, enjoy! ======================================== Dr. __________, 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. Now here is something to baffle you, now that I have spent analogy after analogy in trying to help you understand what going through life with POTS is like, how much of an annoyance it is, and how life altering it is, figure this one out. A war sometimes wages in my mind. It?s a war between wanting to be free from this affliction or to remain a prisoner of it. This may sound crazy at first, since this letter seems anything but a desire to live out life like this for the rest of my life, but let me explain. Fear is found in both options, to remain held captive or to be free from POTS prison, the latter to seemingly become the goal. So why is there hesitation, you ask? A prisoner must conform to the environment they are forced to reside, in all that it encompasses. Nothing they know of it is familiar ground, so they must train themselves emotionally, mentally, and physically to adapt to these new surroundings, new people, new ways of having to live life. Before POTS, I LIVED life. After getting POTS, I feel like it?s a voluntary effort some days to just GET THROUGH life. Adapt and adjust. Call it survival mode. When the prisoner is finally released, after five or six years from their transitioned adaptation, when survival mode is no longer needed or required, when finally they are free to live their life again and not just find a way to get through life, freedom they now fear their prison. Why you might ask? Because the life they once knew is now something very since being incarcerated for so long. Things have changed from what they once knew them to be like, people have changed from how they once were, the environment has changed from how they originally saw it. Everything they see and know has changed and they don?t know how to life works for them anymore. POTS has changed how I have had to live/view life. It?s been so long since how I once lived life and knew life to be, free from symptoms, that I have forgotten what it is like to live life without them. I went from being a fairly active, always on the go, free to do as I willed person to being shackled, chained, and cuffed. The past five years I have had to adapt, conform, and surrender to what has ailed me physically, my prison, all while life has gone on without me. My whole life has turned upside down because of POTS symptoms and so I have been forced to either stand on my head to try and see life right side up again, the way I have always known it to look like and play out for me, or to look at life through distorted view, with everything upside down (funny I thought of this analogy since POTS is all about gravity, wonder why standing on my head hasn?t worked the past five years! Haha). This POTS prison has forced me to redefine my understanding of how life was is supposed to play out for a 19, 20, 21, 22, 23, and now 24-year old woman. After awhile though, I have learned how to somewhat adjust, just as a prisoner does to unfamiliar surroundings, to their ?new? life (whether temporary or permanent, for me hopefully temporary). I have never gotten completely comfortable with how I have had to change living my life, but I have learned to adapt for the most part. I wonder sometimes if me having to change how I live out my life, to accommodate for this condition, that when POTS leaves if I?ll be able to adjust back to what life once was for me. What if dealing with POTS has become such a forced way of how I have had to live that I won?t know how life works without it? Kind of like the prisoner to his cell, how does life work after spending so many years having to redefine your life by your situation/circumstance/surrounding, whether it be an actual jail cell or changing life up to how you once lived it to accommodate for an annoying chronic medical condition? Some people say that once you have learned how to ride a bike that you?ll never forget how to, even if it?s been years since the first time you have ridden. When you go to get back on the back, it?ll be like you never had gotten off of it. Some days it feels like I have forgotten how I once was able to live life before getting POTS, without the restrictions, without the special modifications and I wonder, once POTS is gone, if life I will have to re-learn or if I can just pick it up again, like I had never stopped living the way I once had. So you ask "What is POTS to you"? POTS is a prison that I have had to live in for so long that I have forgotten what it's like outside of barred windows and double pane plexi glass. Has life the way I once knew it to be, the way I once lived it gone on without me? When I am released from this prison I fear that life the way I once lived it/knew it to be will no longer meet back up with me like a long lost friend, but instead a complete and total stranger.

hey there, funny you should post this. i have had a hard time with feeling as if i was "allowed" to express my frustrations with pots, after only 6 years (not 35yrs, but seems like eternity for me).........i want to share with you, and others, as to why i felt this way...........and i think me expressing my feelings out on paper regarding this, and everything else i've gone through was the smartest thing i did most recently.........actually my PCP has been great over the past couple months, allowing me to go in and just sit to vent over this whole condition........he listens and cares deeply with what i go through, even if he doesnt understand it personally himself..........anyway, he had me write a paper (havent given it to him yet, i just wrote it) about "what POTS means to me".............it is basically my story of what i have faced over the past 6 years...................i'd find a good doc, perhaps your PCP or a counselor, to be able to vent.....writing a letter is a good idea...........i tried to do it in a way that my doc could understand, through analogy................ take care and hang in there. you are not alone.

right on wareagle! i was thinking the same thing. a human being, and a young one at that. only 44 years old. too young to die. and his kids too young to have to lost their father. very sad. may God give steve irwin's family comfort in such a horrible and difficult time, a true tragedy.

Who here DOES NOT experience dizziness as a symptom?

id definitely disagree.

i too am very upset over this. he was a wonderful man, full of life........i hope he went quickly and with minimal pain.......i hear that they actually caught the whole thing on tape and that the tape shows that he actually pulled the barb (or whatever it's called) out of his chest and shortly after collapsed.......i wonder if he had just let the thing reside in his chest, if he would have pulled through..........they say if you are stabbed with something to leave the foreign object impailed in you because you can cause more damage by removing it than to just let it be and let medical personnel take care of it, after x-raying where inside the body it is resting, etc..............but still the thing was poionsous also, so perhaps it was the poison that got him, and perhaps he was just trying to save his life by trying to get the poison out of his body by removing the barb................ ugh, so sad............

hey there, i get the weakness, the very fast heart rate (been as high as 220), and feeling really crappy even when my vitals are normal. dont worry, if you have had an echo, it would have ruled out any type of heart disease. usually docs are good at ruling out heart disease before diagnosing such a thing as autonomic dysfunction. they always plan for the worst case scenerio to investigate and go from there.

depending on how high your heart rate is, if it is significantly high while sitting/standing and the tachycardia in consistent, lasting more than 50% of the day, this can lead to a tachycardia induced cardiomyopathy (sick heart basically)...............this is fairly rare though. ultimately beta blockade tends to help with many symptoms of anxiety, the shakes, etc.....it helps to take the edge off with a lot of people who deal with auto dysfunction. not all people, but alot. the heart, yes, is trying to compensate (in some) for pooling blood, etc. but in some cases the heart races because of abnormal amounts of adrenaline (catecholamines) in the body. beta blockers help to eliminate this problem. if you're problem is pooling, i'd suggest asking the doc not only for a beta to help keep your rates at an appropriate level but also to be on a med that will help to increase your blood volume by holding sodium in your system (something like florinef or midodrine)...........it all depends on the etiology behind whether or not beta really promote fewer symptoms for someone, but in general and overall beta blockers are not dangerous to take if you have an inapropriate sinus tachycardia (which is what POTS and other forms of dysautonomia involve, a rapid inappropriate heart rate).........yes the heart was intended to beat between 60-100 during normal circumstances, but the heart was never intended to beat like crazy at rest (even if it is trying to compensate for something else).........so the therapy involves trying to "fix" the heart rates even though the heart isnt the primary problem, along with what might be causing the heart rates to surge, i'd say try the betas and if you feel better, keep taking them.

this is SO SO wierd that you mentioned this........i was seeing a DO who ran the same testing (an oral swab to the mouth) that said that my magnesium levels were/are low too. i have read a million things about magnesium and how a lot of people who have MVP have a low magnesium level which some docs think cause the tissue of the MV to be more redundant and also causes more tachyarrythmia's in some people more so than others with MVP WITHOUT magnesium deficiency ........the low magnesium levels are thought to cause calcification of soft tissue (the mitral valve itself, which can cause redundancy of the tissue) .........seriously, google it....type in "MVP and magnesium" and see what pops up............ i pulled this info off of one website : "A magnesium deficiency: hinders the mechanism by which fibroblasts degrade defective collagen (connective tissue abnormalities are common in mitral valve prolapse), increases circulating catecholamines (an important mediator in platelet aggregation), predisposes the patient to cardiac arrhythmias, thromboembolic phenomena, and dysregulation of the immune and autonomic nervous systems." i didnt have the IV replacement therapy like the DO wanted me to have, only because my insurance wouldnt cover a lot of it................plus my electrophysiologist thought it wasnt "main stream" medicine, and he is the type that isnt all that in to anything that is off the beaten path from "typical" medical diagnostics/intervetion.............. so who knows if it would help or not. i couldnt believe that you posted this though, as i have read a lot of magnesium deficiency, MVP, and tachycardia.........(i noticed in your signature that you have MVP)........

hey jess, i have never heard of this. conduction pathways are very different from coronary anatomy. the only thing different i have heard of with coronary anatomy that can be different in some people is which artery is most "dominant" in people that feed the back side of the heart........basically the coronary artery that supplied both the posterior descending artery and posterior lateral artery is the "dominent" vessel....most people are right dominant, meaning that the posterior descending artery in the heart is fed by the right coronary artery......other people are left dominant, meaning the circumflex artery supplies the posterior descending artery with blood............either way, this shouldnt have any effect on conduction issues........i think you might be referring to an "EP study" ?? EP studies are set aside for people who have abnormalities in the conduction pathways.......some conduction abnormalities can be due to coronary artery disease (but i have never heard of anatomical variations of coronary anatomy to cause conduction problems)........even if you had coronary artery disease (which you most likely dont since you are only 19, still it could happen though) they wouldnt bring you in for an EP study because the conduction problem isnt the primary problem in people with coronary artery disease, they'd end up bringing someone like this in to fix the blockage in the artery which would then in turn reverse whatever arrhythmia/conduction block that was going on..... EP docs are very good at differentiating true arrhythmia problems vs. arrhythmias that are provoked by autonomic dysfunction. the onset and offset of tachyarrhythmia's is how they define what the differential diagnosis is........usually if a patient is taken in for a tilt table and it provokes tachy, it is autonomically driven and most likely the tachycardia "offset" (when it terminates) is "turned on" when the patient returns to supine position......if the tachycardia persists after supine position (some pots patients have this), the doc might suggest the possibility of inappropriate sinus tachycardia as well as a diagnosis of pots.......or perhaps some sort of metabolic disturbance for the supine tachy......there are a bunch of variables to investigate to sort of where and how the arrhythmia is both initiated and terminated....... with all this said, people with pots with no other underlying arrhythmia are not good candidates for EP studies........ hope this helps. take care.

I have never actually passed out, but today i really thought i was going to.......I was working, standing in the cardiac cath lab.....i wasnt even wearing the protective 15 pounds of lead that must be worn during procedures....i was just standing there, no lead, with my compression stockings on and all.......felt okay...then all of a sudden, out of nowhere, everyone's voices started getting faint and muffled........i started getting light-headed but no tunnel vision........then i felt like i was almost having an out of body experience.......i really thought i would be, at one minute where i was and how i was feeling just standing there to on the floor and looking up at the cath lab team all huddled around me........thank God it didnt turn out that way. i managed to get to a chair and thankfully it past (but now i am exhausted and feel nauseated)........ how does it feel before you pass out?