cardiactec Posted August 10, 2007 Report Share Posted August 10, 2007 Hi all,I have been spending some time up at a local hospital in an EP lab doing various things that dont require me to be standing. I met an EP doc a few weeks ago that I have been working with.....he asked me yesterday why I never scrub in to cases or why I'm not in the lab permanently and so I told him about the POTS diagnosis.........he asked what my HR's were and I told him off meds they crank to 200 BPM...........he looked at me and said "there is no way that is POTS, I just have a hard time that with a HR that fast, it is pots, I've never heard or seen anyone with HR's that fast with pots " ........I have heard so many things in regard to pots and my rates -- that 200 BPM, though very high and not typical of pots can still BE pots, that a rate that high definitely isnt pots, back and forth back and forth............this EP doc ended up giving me the name to another EP doc in boston that he said I should go see for further investigation .....I know there are few and far between on this site with rates like this, but I know there are at least SOME of you here........if your rates are this fast, can you respond to this message and tell me if any doctor has ever suggested a possibility of something other than pots going on because of the very fast HR factor?thanks,cardiactec. Quote Link to comment Share on other sites More sharing options...
corina Posted August 10, 2007 Report Share Posted August 10, 2007 oh, no!!!!! i had written almost a novel cardiac, then accidently touched the esc. and it was all gone okay, i'll start again, but will keep it shorter this time.my hr goes up to 200 and above as well when i'm without the bb's. even sitting is very challenging for my hr (and me ) to go nuts. my neuro prof diagnosed me with pots, after my cardio had sent me to him. during the tilt my hr went up to 200 (and a little above, can't remember exactly) and the bp went down (for more than 20 or 30, can't remember, sorry), which made my neuro diagnose me. i'm on a high dose bb's to keep things under control (200 mg, coming from 300. 300 kept everything under control but as i was so very tired i thought of lowering to 200 which makes my hr start racing 2 or 3 times a day which is uncomfortable, but hey, one's got to make a choice!)in the last few years i found out that different docs can have different opinions, even when in the same field. that made me decide to not chase any docs anymore (although i definitely want to get better, don't get me wrong!), it made me so insecure that i forgot the most important thing (to me): live life!!!! enjoy my family and get the best out of my life. when my kids grow older and i am up to it, i will probably go find new possibilities. until then, not a single day will be waisted by me visiting doctors who don't know, think i'm nuts, or what so ever.please don't get me wrong: i needed time to come to this and this is how it goes for ME. i can understand how it stays in your mind (especially, because this is another doctor telling you), but i am much more in peace with my dysautonomia AND myself now that i'm no longer chasing doctors and (try) to accept.hope this helps a bit take cre,corina Quote Link to comment Share on other sites More sharing options...
cardiactec Posted August 10, 2007 Author Report Share Posted August 10, 2007 thanks corina for your message! and sorry you wrote and novel and then it got deleted - lol, i do that ALL THE TIME and it drives me nutty! oh believe me, i'm done chasing docs. i wouldnt even have gotten on the subject of pots if the EP doc had not brought up the questioning as to why i wasnt scrubbing into cases (which involves a lot of standing, wearing protective lead that is about 10 pounds extra weight strapped to you).........i noticed you wrote that your BP went down when your HR spiked - mine didnt and actually this is one of the reasons why the EP doc questioned the pots diagnosis -- a lot of people, i know, dont know that you can have postural tachycardia without any drop in BP -- for the majority of them, they dont understand how or why this can occur, because generally the heart speeds up to compensate for BP that drops out (due to many different factors) ........so i think that is more or less why he was more skeptical on a pots diagnosis, because he thinks you should see some BP changes with such a high HR -- and with me, they didnt. but, as with some other docs, he was also skeptical because of different morphology of the tachycardia, he didnt think it looked sinus -- some think it does, others dont. lol. and nobody will really know unless an EP study is done.......but i'm done with pushing that, kind of a waste of breath at this point. it is tough not to get wrapped up in what some docs think or say regarding this, because to be able to have a quick fix to this (as this EP doc was saying, thinking it is just an arrhythmia problem that could be fixed by ablation,etc) would be so wonderful. but i know this is probably fat chance of happening, and that this is pots.......as for living life, definitely am -- finding my way around pots by working in a career that i love, perhaps not doing exactly what i want to do, but i at least am still able to function -- which i know, for some, is more than a challenge -- so i am grateful for what i can do. i just hate bringing up the subject of pots to people, especially medical personnel -- mainly because word travels fast in the medical community and i want to have access to as many jobs in my area as possible -- and have had trouble in the past with getting a job simply because "word had spread about the girl with the HR of 200 when she is standing" ....many people, when they hear that, arent too thrilled to hire you! so yeah, i actually should have just thought of some other reason as to why i couldnt scrub into cases, lol!thanks for your message. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted August 10, 2007 Report Share Posted August 10, 2007 cardiac tech~ hi...Uh have you ever had an EP study done? I know when i saw my pots doc and we talked about my HR being 200 and higher.. he decided to do an EP study b/c like you allready mentioned (while there are a few of us on here) pots patients dont generally go "that "high in HRs.my doc told me that i could have a uhm electrical problem somewhere in the hr.. causing such High rates.. however my ep study we couldnt find an electrical prob. or a reason for my high hr rates. after my Ep study he changed my beta blcoker to a stronger one..(i had been on a massively high doses of propranolol 4x's a day.. and i was still having rates that where running p to 240bpm... he put me on bextaxolol.. and this med has helped ALOT.. its the most effective beta blocker ive been on... I still get tachy but NOTHING like i used to get..Oh i wanted to say also.. that just b/c HR of 200bpm and higher are not "typical" of pots.. it is still possible.. (i think) I think that when dealing with our ANS systrems anything is possible! But our system are so sensitive and react and are so wacky... that maybe our/your body is over compensation when you stand or sit or wahtever.. in order to keep you front fainting.. and maintaining a bp.. oh and about bp.. generally when im having high rates my BP will be really high as well... but i also have big drops in bp as well...Uhm i forgot to look at your signature are you on a BB? is it possible if you are maybe trying a new one?Another thought have you had your catecholmine level checked (ie adrenaline..norephinephrine and all that? checked out?good luck to you Quote Link to comment Share on other sites More sharing options...
Ernie Posted August 10, 2007 Report Share Posted August 10, 2007 Hi,My HR goes from 40 bpm to 250 bmp and I have a diagnosis of POTS and NCS.But it would be wise to have and EP study done. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 10, 2007 Report Share Posted August 10, 2007 i don't mean to sound rude--but if he's an ep cardio in Maine, exactly how many POTS patients does he have experience with directly? many folks here with verified dx's of pots or ncs or both have hr's well into the 200's off therapy.Nina Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted August 10, 2007 Report Share Posted August 10, 2007 Hi,My heartrates went into the 200's and I was diagnosed as having SVT/Sinus node reentry tachy and POTS. I do poorly on the TTT. I think I have mentioned from day 1 that in my opinion it'd be good for you to see an EP/Cardio in Boston they def. do know what they are doing. Good Luck!!Jacquie Quote Link to comment Share on other sites More sharing options...
corina Posted August 10, 2007 Report Share Posted August 10, 2007 cardiac,i think that's just what it is: we would want to have a disease (if any!) that could be easily fixed!!! and, like you and i'm sure a lot of us here, i have these moments where i think (or should i say hope?) that my dysautonomia might be something else that could need just one specific med to be cured! or: i get so excited to hear about some med or treatment that i think just that will help us get better. and i do think that hope is keeping us going.i think it is more difficult in your situation (and i think i remember there are/were more people working in the medical field at this forum), as you are surrounded by doctors and they all have their own opinion. that could help you, but it can also cause extra stress in feeling insecure, having (false) hope or what so ever.wish you wisdom in dealing with this,corina Quote Link to comment Share on other sites More sharing options...
persephone Posted August 10, 2007 Report Share Posted August 10, 2007 I'm like Ernie- my pulse can be anything from 20-250++ Last year I had a sustained episode of 214bpm in hospital which was recorded. but I don't OFTEN go that high, only if I am really rough. And epo injections (procrit I think it is in the US) mean that I don't often go up beyond 130-40 now. Quote Link to comment Share on other sites More sharing options...
Tessa Posted August 10, 2007 Report Share Posted August 10, 2007 Would you mind if I ask you not to listen to doctors who have no idea about POTS? I did not wanted to be rude, but I know how much you care and worry about your health and symptoms and are aware of your hard work to follow a "normal" live... As many mentioned already, a high hr rate is a possibility for POTS as well as a lower one, both options are included... Come on, you know it too.Do not allow them to make you feel confused. What would you think that Dr. Grubb would tell you?If you can, avoid wandering from one doctor to another if they have not much knowledge about POTS. Take careLove,TessaBTW: Ernie?s suggestion is a great idea too. Quote Link to comment Share on other sites More sharing options...
cardiactec Posted August 10, 2007 Author Report Share Posted August 10, 2007 i'm definitely not wandering from doc to doc -- i work in the field of cardiology, so i get questioned a lot by doctors and techs as to why i dont do certain aspects of the job (all the heavy labor parts of the work basically) -- and at that point, i'm really left with no other option than to tell them straight up why i get to "kick back and relax" while they have to stand scrubbed into cases for many hours on their feet.......i have seen two EP docs from the whole 6 years I have dealt with pots -- i mean, seriously have seen, in consult TEW measly EP's... my EP doc here in town had to beg me to go out to mayo last year, and he repeatedly asked me for a year straight until finally i gave in, thinking it would yield some further answers/explanations and i'm sorry to say it did not (this was the second EP doc i saw). so i dont drift from one doc to the next week after week. i really am not all that concerned with how high my rates get, if it kills me, or whatever BUT if there is something else going on that can be addressed, than i think it's only fair and wise to look into it more.i dont know what dr.grubb would tell me - he doesnt know me and has never evaluated me - and until he does, i would not have a clue what he'd say or think....however, he did email me several months ago after i questioned pots with rates of 200+ and he said that it is quite uncommon to see pots patients with rates this high..coming from the CV field, i can assure you that my HR of 200 DOES NOT present the normal type of morphology we see with sinus tachy, so there is definitely no confusion there - and all the docs that look at my ECG's are in agreement on that - but my EP doc is very scared to do an EP study on me - i think mainly because he knows me so well (i work with him) and is concerned to put me at any risks...i have never had an EP study and think it is probably one of the first tests they should have done on me -- for goodness sake, they did a cardiac cath on me to check pulmonary pressures, but they never did an EP study! lol. the EP doc yesterday was floored when i told him this, as EP study would have revealed more info regarding my personal situation...i know it's still possible to have pots with HR's at or above 200, but i think it's wise to rule out electrical abnormality as already stated here. it would be foolish to make a young person live with rates like this day after day when having left out a very important diagnostic test in a very atypical type of pots patient (and yes, it is very atypical to present with pots with rates 200+, so all you that have posted here that soar at and above 200, yep, you're a rarity! lol) ......as for the EP doc up here in maine, he travels many different places with/for his work and sees many many patients -- so he is quite familiar with the typical pots presentation, which he says GENERALLY is NOT HR's of 200+.......possible but most certainly not the norm.........jacquie, glad you posted -- the EP doc yesterday actually questioned SANRT and i immediately thought of you......he recommended i see dr. stevenson at brigham and womens.........who is the doc you had recommended? i may or may not follow through with this because i figure, if mayo clinic EP doc refused to do EP study on me, than it's probably not going to happen....I am on beta -- i'm down to 40mg's of sotalol right now.....started getting tired or taking 200 mg's, so basically my HR's are flying off handle lately because of cutting out so much sotalol over the past three months....though, once again, not too concerned -- am working 30 hours a week!thanks all for your messages! it's great to have such support/input and nice to know i'm not the only one with rates of 200+! i knew there were some of you "odd balls" here, glad i'm not the only one! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 11, 2007 Report Share Posted August 11, 2007 Again, I didn't mean to sound insulting--but having spent every Summer until I was 17 in Maine, I know that the population base there isn't quite as large as in other states in the northeast, such as MA. Angela, you've had major questions about components of your dx that don't seem to completely match since the first day you were here. Just my opinion here, but it's time to stop talking about it and do something to actually get your questions answered by professional(s) in-the-know. Regardless of whether you choose Boston or another major hub-bub of teaching hospitals, it's my opinion that you get your appointment(s) scheduled and get yourself closer to an answer that fits "you".On another vein, I personally wouldn't feel obligated to answers anyone's questions that are about your disability unless you really want to. It's no one's business but your's and HR's... just my two cents. Not that I'm all that private, but there are some people for whom i would likely just answer with a general statement like "I have medical problems". Granted, if you like the person, trust them, and don't mind chatting about it, that's one thing, but I also get a ton of questions, like why I get to leave the building on warm days when the AC doesn't work...or why I'm wearing that spiffy cooling vest. Some people are gossipy and I just smile and say things like "yes, isn't it a beautiful fashion statement" most don't push farther, but I could see how in a medical facility, with folks who are used to being pushy (er, I mean assertive ), they might keep going until you answer. I actually had to just look with direct eye contact, and smile quietly at one woman who kept questioning and I knew I wasn't going to tell her. A genuine smile--no sarcasm or anything. Finally, I kind of smirked and shrugged until she said "okay, you're not going to tell me" and I just just said "thanks for understanding my privacy". Never happened with her again!Nina Quote Link to comment Share on other sites More sharing options...
pat57 Posted August 11, 2007 Report Share Posted August 11, 2007 cardiatec,you wrote "if mayo clinic EP doc refused to do EP study on me, than it's probably not going to happen...."is that because it's risky?If so, that's a huge RED flag! Quote Link to comment Share on other sites More sharing options...
cardiactec Posted August 11, 2007 Author Report Share Posted August 11, 2007 every invasive test comes with risk, but the majority of the time, especially with young people who have no other med problems, an invasive diagnostic test such as an EP study comes with minimal risk. the EP doc was more hesitant in not performing an EP study on me because the high rates were triggered by position change, hence postural tachy...mightymouse, yeah the population base isnt very large, lol, it didnt sound insulting at all. and you are right, I know I should just stop talking about this here on dinet and MOVE in some direction to evaluate this completely.....part of me wants to do this and part of me doesnt......it's more of a nuisance if anything to travel down to mass or mayo or ohio for a third/fourth opinion and part of me will SCREAM if i hear pots as a diagnoses one more time! lol..... everyone has such differing opinions about all this that part of me doesnt want to "get lost" or wrapped up in which opinion could be or IS right and which is wrong -- if i could simply just find an EP doc that would do an EP study on me, no questions asked, no "opinions", just to DO THE TEST to answer the questions and see who is right! lol, i'd be there in a heartbeat (no pun! lol) -- but i am doubtful of that happening .....to be honest, i wonder why the EP doc that questioned the pots diagnoses that i spoke with yesterday while at work, if he really believes it isnt pots, than i wonder why HE doesnt do an EP study on me????? ehhhh?? LOL. i thought of that......i mean, and he was really insistent on me seeing someone for a "correct diagnoses with an EP study". i wonder why didnt he just opt to do an EP on me himself? hmmmmm....I hear ya about trying to be more private with the med problems, wish i could!......they definitely poke and pry as much as possible, so i just tell them so i dont have to hear them all day long questioning the "why's" ..... LOVE your response about your "fashion statement"! SOO funny. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted August 11, 2007 Report Share Posted August 11, 2007 if you decide to have an EP study might i suggest that you have an EP do the study that has SOLID KNOWLEDGE in dysautonomia.. my EP study was done by dr grubb.. and honestly i don think i would have felt comfortable having it done by any other dr....only b/c dr grubb (of coure) is one of the leading ans dr's...and i had comfort in knowing that he was not going to ablate my Hr unless he was absolutly sure it was a problemn toatlly unrelated to pots...i say this b/c as im sure your probably allready know.. ablating a persons heart BEcause of pots.. can in most cases make patients worse... b/c the body acutally needs the Hr to get going in order to help keep you from dropping to the floor everytime you stand or sit up.. stand to long.. lalalal...I only mention this b/c i saw a few EP dr's who (wanted to help are good drs) wanted to ablate.. had some knowldge of pots... But where uhm well versed.. in dysautonomia...I know how having high rates like you speak of feel...not good!why did you need to lower you beta blocker? can maybe you try something else that works better for you?what about trying to get into see dr grubb or dr fouad at the cleveland clinic? they are cardiologist very well versed in pots... uhm maine.. w/o looking at a map i cant quite place how far up your state is up north... Uhm i have a good friend with pots who has a very good cardio thru the university of penn in philadelphia.. dr . Lin... uhm he has been extremly thurough w/ her and she has had to have what 3-4 Ep studies done now.. with 3 seperate abaltions... this particular EP cardio.. was like i said extremely thurough... and instead of ablating her sinus node he looked until he found the area's affected.. her tachy (high rates the got her going at 220 during the EP) and it was toally unrealted to pots...an EP study can really help rule out other rythm problems....then if you find that its not a diff rythm problem focus on the pots.. I know that it bites to hear that... but i was Hr broken when i was told it wasnt something else .... b/c i was hoping hey something else.. this fast tachy will be gone.. not the case... but after several yrs of dealing with high high rates im fortunate to find a med that does help...good lcuk to you.. i hope that you can find an EP to help ya out Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 11, 2007 Report Share Posted August 11, 2007 btw, i wasn't suggesting you get the ep study done, just that you go to someone who can do a really thorough differential diagnosis. glad you liked my fashion statement!nina Quote Link to comment Share on other sites More sharing options...
doctorguest Posted August 11, 2007 Report Share Posted August 11, 2007 Hi Angela,My personal opinion is that you should have an EP study done - mainly for your peace of mind. Find a good EP specialist who wants to do it and have it done. I usually follow a conservative approach in many things, but I think in your case, it may be reasonable to be more aggressive in order to put your and other cardiologists' concerns about possibly "fixable" cardiac arrhythmias to rest. Otherwise, I think you will always question your diagnosis in the back of your mind.By the way, Mayo Rochester cardiology department is considered one of the very best in the country, but... it also depends who in particular you saw and what their reasons were at that time behind reluctance to proceed with an EP study.Finally, I agree with Nina about staying private about your medical condition with respect to the information provided to your co-workers. Believe me when I say that I know how "inquizitive" and "assertive" health care personnel can be - everyone wants to know everyone else's business. It is probably best to give away as little information as you can when you're directly asked about your condition. I think it would be fine to say that because of a medical condition, you cannot scrub in, and leave it at that. This way you control the conversation and not those who are asking too many questions. Quote Link to comment Share on other sites More sharing options...
cardiactec Posted August 11, 2007 Author Report Share Posted August 11, 2007 dizzygrl, what prompted dr.grubb to do an EP study on you? was it solely on your HR of 200+ or did he see something on ecg or holter/event that looked suspicious for something other than just a sinus tach?i am scheduled to see blair grubb actually - scheduled to see him in december .....i scheduled with him MONTHS ago, and i know that is the norm to have to wait a lengthy period of time before seeing him .....i know he supposedly is the best of the best when it comes to both POTS and things relating to electrophysiologic problems. ....once again i wish he could just tell me over he phone whether or not he'd do an EP study on me -- because at this point, if he's not willing to, i'd rather be spared the trip out to ohio and the financial strain that comes along with it (i'm still paying off a good chunk of bill from mayo from a year ago, and that is WITH very good insurance!) .......i'm reluctant to travel that far, with that much expenditure, only to once again hear "POTS" without further investigation into this potential conduction problem. some boston docs are good, and they are closer to me - and it wouldnt be so much a financial strain .....so ....i may just go see an EP in boston...the EP guy I saw at mayo, I believe his name was Michael Osborn - a very nice, compassionate, and knowledgeable EP -- this is why i'm partial to not really investigating this further, because though he seemed to potentially question an electrical abnormality, he leaned more towards the pots as being the culprit....i think this would be less in the front of my mind if i was working in another field! LOL. the irony in all this is that, I started in with pots symptoms 5 months into my cardiovascular program - never did i think that not only would my patients become my "work", but so would I! it's definitely more challenging i think, for me, being in cardiology, to simply ''forget about it'' -- this being just beacuse many people I work with are well aware of my tachy just from times where i've been at work and unfortunately ended up with some really rough runs of tachy spells and getting sick from it -- this is something that is hard to keep "Private", lol - when you're turning pasty white and look like your going to keel over, and then end up in the ED (which thankfully has only happened about three times in the past 5 years in dealing with this), people I work with figure things out on their own half the time........half the time, my mouth can keep my medical situation private, but my body unfortunately cant. it's easier for people who arent directly connected by their job to a medical facility to simply "detach" and keep all in all private about a medical condition, but if i have a problem while at work, i cant necessarily leave work and go to another hospital for care in order to keep it "private" - mainly for financial reasons - it cost me nothing to get care at the hospital i work at whereas it would cost me 100$ or more for a visit to another facility. Quote Link to comment Share on other sites More sharing options...
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