Just Got Back From Electrophysiologist Appt...

[Lauren78]

Hi everyone. So, I had a follow-up cardiac appt with my electrophysiologist today (follow-up from tilt table that diagnosed me a month ago, check on meds, and to go over holter monitor recordings from past month). Brief history: when initially visiting the doc for arrhythmia problems they said either heart related (i.e. misfiring node) or ANS related (NCS and POTS). Did bloodwork, history, looked over myriad of past tests and doc said ANS. Did tilt table, huge conformation from that...diagnosed, NCS/POTS. I got the monitor a week before the TTT and wore it for a month. NOW doc says its possible I have BOTH (like any of us need more than one health issue huh?! ) The general concensus is that my arrythymias/tachy is stemming from both POTS and also a atrial node misfiring. They said at first my strips looks purely like a sinus arrhythmia ; but that one of them really looks like atrial arrythymia, and possibly a few others slightly. They gave me several options...and I am in a quandry on what to do.

Option 1: Do nothing, either way it's benign...so just deal with it. Take the meds for the NCS and modify my activities.

Option 2: Take a high dose anti-arrhythmic drug to control the tachy issues and see how that goes

Option 3: Do an EPS study for diagnostic to see if it is just NCS, or both NCS and heart related. If also heart related do an ablation of the atrial node (NOT the AV or the SA node...it's one of the many little accessory nodes in the atria). If no reaction, then pull out and NCS with sinus arrhythmia further confirmed.

I don't think doing nothing is an option. I would like to be able to do some activities, especially those I love without my heart getting all racy.

I don't know what to do. I am almost 29 (in a month) and not sure I want to take anti-arrhythmic drugs for the rest of my life. What would the side effects of that be? And I don't know if I want something always suppressing the rhythm of my heart (esp. since when at complete rest it's a regular 48). And with low blood pressure, this would lower it more...so would have to be on something to stablize that. Then constant bloodwork and other monitoring.

Don't know if I want the test...if they find just NCS, then what a waste and a pain (the study DOES NOT sound fun). If they do find something there are risks of complications (it is a heart surgery per se after all). I also read that ablations in POTS patients can make symptoms worse. Also, there is only a 85% success rate with the one they think it will be for me.

So I am really not sure what to think or do now. I totally did not expect this today...I just expected a follow-up, my script to be refilled, and on my merry way. I did not expect them to say that along with the NCS they also think it may be a heart arrhythmia issue too and not just the NCS.

Help...anyone have any input, suggestions, experience? Anyone have an EPS done? How about an ablation? What was the outcome? Anyone on here been taking anti-arrhythmic drugs since they were younger and been on them for a long period? What have the effects or side effects been?

Any help and comfort would be appreciated.

Thanks guys!

[lloppyllama]

Hey Lauren,

Sorry to hear about the bad news...

Though its bad, its also good to know what actually might be going on. I really dont know what i would do if i were you. I agree with you that the first option doesnt really sound like the best plan, doing nothing about it for me at leaste wouldnt be very high on my list. Honestly i might do the EPS study, i dont know much about it so actual facts about the test arent influencing my opinion right now, but i would rather know for sure what is going on in my body. But if the procedure would be very painful/risky, im not sure i would go through with it.

Perhaps you could just wait a while and see how things play out, if the tachy doesnt end up going away after being on high salf and fluids and your new meds, then maybe consider your options again. It might be to early in your NCS/POTS diagnosis to be already looking for other things. So i would probably wait and see if the NCS treatment helps with your symptoms, and if so all is well and i would just leave the heart stuff on the back burner, because yes you may have it but its benign so i wouldnt worry bout it. Say that the NCS treatment doesnt help your symptoms improve, i then would go into further research with the EPS study and all.

Its really a tough decision to be making, but i think that maybe waiting and seeing how being on your new treatment plays out, and then re-evaluate the situation.

Good luck!!

~Mary

[flop]

Hi Lauren,

I had an EP study done in 2004 for symptoms of palpitations (this was before the virus and real trouble and POTS diagnosis). The plan for my EP was to have a diagnostic study and if they found an accessory pathway to ablate it, I specified I didn't want an AV-nodal pathway ablating due to the higher risk of needing a permanent pacemaker.

In the end they couldn't induce and arrhythmias during the EP even when they gave me Isoprenaline (an infusion that increases the rate and force of your heart beats) and repeated the study.

The EP itself wasn't a wonderful experience but it wasn't that bad either. The worst bit was actually having the local anaesthetic put in my groin before they started the procedure. Almost all EP studies are done under light sedation, but I refused sedation for mine (I have a terrible problem of crying uncontrollably for hours after being given any benzodiazepine). I can remember the procedure (lying still for a couple of hours, rather boring, when they paced my heart really quickly it was quite uncomfortable and slightly painful - a small dose of IV morphine settled that and calmed my nerves too).

After the EP I had a complication of a haematoma (blood clot) forming at the groin puncture site (I do have bleeding problems) which meant having the nurse press hard on the site then further bed rest before I was allowed to get up. That left me with quite a lot of bruising down my leg but wasn't particularly painful.

As far as I am aware the patients that had ablations for POTS, specifically to reduce their heart rates didn't do well. However there are other members here who have had ablations for specific arrhythmias and done well after the procedure. I think you need to understand clearly with your EP consultant what types of ablations should not be done in POTS and what he is proposing doing for you. Don't be afraid to ask lots more questions so that you understand as much as is possible.

Cardiactec might be able to give you some more information as I know she has a special interest in electrophysiology studies.

Flop

[flop]

I should have said that the frequency of the arrhythmia should play a part in your decision process.

I used to get regular palpitations but since being on a beta blocker for POTS I only get palpitations every few months (not the same as my daily sinus tachy). I have now "caught" some of my palpitations and they are an atrial tachycardia. A repeat EP study was suggested, but not highly favoured by my EP as they didn't manage to induce anything last time. I declined the repeat EP, not because I didn't want to have it done again but because I only get symptoms a couple of times a year it didn't seem worthwhile.

Flop

[Lauren78]

Thanks for the info guys. Kind of sounds like the EPS study would be jumping the gun too soon now. I agree that the NCS/POTS diagnosis is so new that maybe we should try different meds to see if that helps first.

Sorry to hear about your not so fun experience with the EPS Flop. My cardio doc said that as long as they don't ablate the SA node then it won't effect the POTS. He said the SA node was sensor nerves in connection with the ANS, so that could cause problems. However, they said the node they would ablate is an accessory atrial node that lies close to the SA node, and shouldn't interfere with the POTS. I am not sure about that though. Especially if they get too close to the SA node.

Cardiotech...you out there? Any ideas?

Also, Flop, I have a question about the sinus tachy you mentioned and asking me the frequency. I have elevated heart rate everyday...walking, stairs, housework, getting up, exercise, etc, etc. I don't feel palpitations or fluttering...just racy...and it's usually 130-160. They said all the recordings were sinus tach...but one looked like atrial tach. That one was when I was hiking, rocky, inclines...and I pushed myself way to hard. With that I felt the racy but also HUGE palpitations, like my heart was flopping all over the place and in my throat and I had to immediately lie down. Soooo....I have sinus tachy everyday. I don't, however, have palpitations with it everyday. Is that normal for you too? What about others of you out there? Is sinus tach normal on a daily basis? I probably only get the palpitations ones (which I assume are the atrial ones) about 1 every few months.

What'dya think?

[cardiactec]

hmmm......interesting......well, I think if you know, or the docs know (or are assuming) that this look like an atrial tachyarrhythmia brought on by the vigorous hiking rocky inclines, I'm no cardiologist, but my hunch before actually going on for an invasive EP study would be to have you jump into a vigorous stress test - where a cardiologist can continuous monitor you to see if this is a exercised induced tachyarrhythmia (other than sinus tachy) .............seems like that would be the best place to start since you at least know potentially what could or might be inducing the rhythm (exercise induced) ....

- you said this rhythm, while hiking rocky inclines, felt like your heart was flopping all over the place and that you immediately had to lie down .....when you laid down did it feel like the rhythm abruptly terminated or did it continue to feel tachy for a few minutes and then slowly taper off?

the biggest way, before having to go in for invasive EP study, to differentiate between a sinus mechanism and atrial (or other ectopic foci) causing tachy is this -- generally with a sinus tachy, the rate slowly increases and slowly decreases with different maneuvers (most common valsalva or carotid massage) .

Did your doctor explain to you why he thought it was an atrial tachycardia and not sinus? morphologically (the way the waveform appears on ECG) a rhythm coming from the sinus node "creates" a waveform (P wave) that would look different from that of an atrial foci/tachy .............I know with me, my cardio at first thought that I had atrial tachy because my P waves were outrageously funky looking, not typical presensation of "normal" sinus tachycardia P waves .....to try and distinguish between whether or not it was sinus tach vs atrial tach, he performed a valsalva maneuver on me with continuous ecg recording and found there to be a gradual slowing and then gradual pickup once again in rate with absolutely no change in P wave morphology, thus sinus tach in origin.......if the rhythm had been coming from an atrial source and not the sinus node (where all impulses originally start in the heart), than valsalva or carotid or medication would cause an abrupt termination in the rhythm (generally with a PAC or PVC) and then instantly convert to P waves that look different from the previous P waves seen .........if you're rhythm terminated when you went supine, and it terminated slowly (gradually decreased) i'd think more sinus tach due to POTS but if you went supine and the rhythm persisted, I'd think atrial source....

another thought, which I was told by a mayo clinic electrophysiologist, is that excessive catecholamine release, along with position change (standing position) can cause a change in P wave axis/morphology and mimic an ectopic rhythm, but once again, to truly differentiate this from sinus tachy, the onset and offset is the key to figuring out whether or not this is a sinus tach or atrial tach.

You describe me to a T when you explain "huge palpitations" - was riding my bike the other day and pushed myself too hard and felt the same way -- BOOM BOOM BOOM like crazy in my chest, couldnt breathe. that more or less could just be because you're pushing yourself too hard and increase even more sympathetic drive to the conduction system of the heart. BUT, i am not one to say for sure.

I wish I could see your rhythm strips!!! LOL.

Was this an event monitor you had on or holter (continuous recording) ? if continuous recording, I think it would make it a lot easier on the doc to see both onset and offset of what he is classifying as a possible atrial tach. if you were on an event monitor and pressed the button before or after offset of the rhythm, than once again would be hard to see changes in morphology (the waveforms) and how the rhythm broke -- quickly or gradually ....

I have never had an EP study myself though I have had a right heart cardiac cath (which essentially is somewhat similar, just not looking at/mapping/stimulating/pacing conduction system with right heart cath) ........I personally didnt have a problem with my cath, though I cant say if EP study would be worse or not..........I know during my clinical time in EP, we sedate our patients and they are looking PRETTY comfortable - some snore! lol. If you have to have an EP study to determine if there is a rhythm other than sinus tach going on, I wouldnt hesitate. being on anti-arrhythmics the rest of your life wouldnt be fun when there is about 98% chance of successfully eliminating the tachy via ablation. As flop said though, and as personally experienced by her, many times the rhythm cannot be reproduced in EP.....which is another con to consider. ....

My recommendation, if you feel that this rhythm (whatever it is) was brought on by vigorous exercise, would be to go for a vigorous stress test -- with a steep incline on the t-mill .....if the rhythm can be reproduced there and morphology, onset/offset can be seen with vigorous exercise, then i'd go for the EP study ......

Has your doc ever done a valsalva or carotid massage on you while in a tachy fit?

-Cardiactec.

[MightyMouse]

Lauren, I would be exceptionally cautious about allowing anyone to ablate anything in your heart. It's a one way trip--can't be undone, ever. Granted, if a ep issue is really to blame for your symptoms, then an ablation might make you feel much better--but if it's not, and tachy is just a symptom and not the cause of your issues, then ablation would be a very bad thing. It's a big choice to make--do so with your eyes open and all the info you can gather.

Nina

[Lauren78]

Hi Nina and Cardiatec.

Nina, I will respond to yours first...since it is shorter. That is what worries me...can't be undone. And they said if it's too close to the SA node and accidently get that, then it's a pacemaker for me! I think that a trial run on meds for several months to see what happens is the better option. If that doesn't work, then consider an EP study. Ablation, as you point out, is irreversible...so a pretty major decision! One that my entire family (of which my step dad is a GP) said to not do just yet.

Cardiatec...thank you SO much for your incredible reply. I will answer you as best as I can. OH, and if you want to see my strips and have a fax machine I would be more than willing to fax them too you. I always get a copy of all my records to fax to my step-dad. Just let me know if you want them!

The doc isn't sure...he said the EPS study would be more diagnostic to discover where it is coming from, because they aren't definite. When I was hiking and heart was flopping I immediately lied down...it continued for another minute and then stopped. The PA at the cardio office said it abruptly stopped on the strip, but I remember feeling like it tapered off. I also wear an ECG watch and watched my bpm's taper down. On a normal daily basis I can tell it elevates the more active I am, and then slows back down. Sometimes if it is elevated (120-140) while standing and I lie down though it immediately goes to the 60 range (checked this with my watch). But otherwise when I go up stairs for example and it gets to 160 I continue to check my pulse and it goes down...150...145...140...130...120...100...95. So that makes me think most of the time it's pure sinus tach. I do think it may be possible that I have some atrial tachy, like in hiking, unless a sinus tachy can also cause the crazy flopping palpitations also. I looked at it as though I was hiking for 2 hours (with rest breaks) but my heart rate still stayed 120 or higher...so when it got floppy I thought it was because I kept it in sinus tach too long and it had had enough. Is that possible?

The monitor I wore was one that I pushed a button whenever I felt racy or tachy and it recorded for a minute or more. The one in question recorded for 6 minutes. So, I can understand what you are saying and how it would be hard for them to differentiate since it only captured the tachy times. I would record one while at rest and send in with the rest for them to see the difference. But there were no strips where it has a rest and tachy on the same strip.

I think the stress T-mill test sounds like a good idea. It sounds like they can watch it increase and decrease...or just suddenly start and stop, and be able to tell if its sinus or atrial then? So your saying if they can see it with the T-mill test, then to have the EP study...or not have it??

Thank you for telling me about your cath experience...and your experience watching patients in the cath lab. At least that reassures me that may not be as terrible as I anticipate. I know I would be given Versed for the benzo to make me sleepy comfortable.

I have not had a valsalva or carotid massage done. Maybe that is something they should try too. Would some other monitor help them distinguish between sinus and atrial? I know they have the continous loop monitors, but those are only for 24 hours I believe...and it would be my luck that I would have nothing during that time! LOL.

I wish there was some way I can monitor it to figure it out more on my own at home! I do think the majority of the time it is sinus tachy, but then again I am not a doctor or heart tech...so I can't say for sure.

[cardiactec]

Hey Lauren,

I definitely do agree with nina that accidently ablating SA node would NOT be a good idea and would cause you further problems.....but believe me, though it CAN happen, the probability of the EP doc zapping the SA node accidently is extremely rare.

so is the doc DEFINITELY sure by looking at your strips that there is an underlying rhythm disturbance other than your POTS? what you describe, the gradual slowing, especially since it stopped after going supine, reflects more of an autonomic mechanism than conduction abnormality - but then again, this can be very tricky to try and differentiate -- which can first the chicken or the egg type deal -- the SA and AV nodes in the heart are RICHLY innervated by intrinsic SYMPATHETIC and PARASYMPATHETIC fibers (part of the autonomic nervous system) - not CONTROLLED by then (thus isnt the primary "drive" of electrical stimulation -- the cardiac cells do this on their own - in the nodes/and conductive tissue) - the sympathetic and parasympathetic nervous systems both influence HR response and this is seen more with going from supine to standing, while sleeping (parasympathetic tone is greater via HR slower), with exercise (sympathetic tone is greater VIA increase HR), etc .....when you mentioned going supine slowing breaking the rhythm, that makes me think more autonomic than conductive problem, but cant say for sure.......usually with conduction problems such as with atrial tach and other PSVTS, the rhythm doesnt generally break just by lying the patient down ....heck we've had patients head to floor and legs to sky and we cant break them from their PSVT.....usually just give them a shot of adenosine, and sometimes they come out of it and sometimes they dont....

depending on correlation of symptoms with rhythm strip morphology (where your doc is seeing what he thinks is an atrial tach) and if you think it happened with vigorous activity, t-mill tests can be diagnostic to rule out exercise induced tachyarrhythmias ......that way your doc can better see the onset/offset of what he may be calling "atrial tach" .....it's worth a shot, it might not be re-producable, thus may not be a good idea to go in to EP to see if it can be reproduced there....if t-mill doesnt work to produce the questionable arrhythmia to clearly see onset/termination, than (i know my cardio did this with me), he had me do a tilt (not poor mans) and was up for about 20 minutes, watched my rhythm, put me supine and i was still tachy, then had me perform valsalva and watched to see if there was any abrupt termination or change in the rhythm......

if your doc isnt 100% certain that this IS in fact another rhythm aside from pure sinus tach, I wouldnt go through with EP ....if this were a ventricular type tachyarrhythmia, than it would be a no brainer to get your toosh into the EP lab asap (and your doc would clearly know if this was ventricular in origin) ....ventricular tachyarrhythmias are definitely nothing to mess with, but generally PSVT's (such as atrial tach) - though annoying, dont generally pose lethal consequence (though could cause hemodynamic compromise and induce syncopal event, which could pose a problem say if you were driving or something..) . they SHOULD be dealt with, either with EP study/ablation and/or meds, but if they happen infrequently (as flop mentioned) than you might not even have to do ANYTHING about it ......and there are certain things you can do without meds (and this should be established by your doc, your doc should tell you if this is a good thing or not for you to do) but valsalva maneuvers, splashing cold water on your face, gag reflex - all stimulate parasympathetic activity and generally can break a tachyarrhythmia, not ALL the time, but most of the time ....

i'd first establish and confirm that there truly is a rhythm disturbance.

i'm PMing you right now...

cardiactec.

[cardiactec]

Lauren, you asked if tachy every day is normal for "any of us" . YES, for me it is ....I'm on beta still (though slowly declining the dose and completely cut it out of my life, tired of taking meds and want to see how well/or not I feel without them) and even with beta, my rates are up -- still up around 160. off beta, they can get as high as 210. if i'm sitting generally i'm not tachy..........if i stand for too long, pick my cat up, do laundry, out in the sun, washing dishes, cooking, anything basically where i'm on my feet and I fly -- every day. oh my gosh, bike riding the other day - whoa, I got home and CRASHED on the bed, was so SOB, I didnt take my HR but it must have been over 200 because generally i dont feel my rates unless they are over 180. exercise makes it go WILD, but i still do flat surfaced biking as deconditiong can make things a lot worse for dysautonomia patients....glad to see you go hiking and such.....are you still fairly active? sounds like you are and that's great!

[Lauren78]

What you just described is me to a T!! I also fly when standing and doing anything...picking up my cats (I have two!), doing laundry, out in the sun, walking in a parking lot...and everything you mentioned. I am not on a beta though, I wonder if that would help. Sorry to hear about the bike ride...that *****. I hate when I do something like that and then get SOB and all tachy...I just crash!

I try to be active, but find it is harder and harder. That was the first time we went hiking in 6 months. It was labeled an "easy" trail and thought I would give it a go. It was easy, but not for me. Seriously, 60-70 year olds were passing me up! After my episode with that my fiance told me that was it...no more hiking until things are under control. I try to stay active because #1 I will go insane if I don't, and #2 I feel that it should help with heart health, etc. However it is very hard...I mean walking to the store from the parking lot gets me to 160 (esp in the summer where it is super hot here). So I guess that should count for cardio, right? LOL

The doc is not at all definite on the atrial tachy...just suspects because of that one strip. Said it abruptly stopped instead of tapering. He wants to do the EPS just for diagnostics. I feel like they can diagnose the difference between sinus tach and atrial tach another way. Like with the stress T-mill test you suggested. Can't wait for you to read the strips!

[cardiactec]

LOL, I know, and MY CAT isnt even BIG! she's like 7 pounds! though my bro's cat is about 20 and when i pick him up WHAM, instant flying off the handle tachycardia! haha. crazy! cant wait to see what happens if/when i have kids! LOL! that'll be my cardio work-out, to pick up jr!

as for the 60-70 year olds passing you on the trail, I've met a lot of 60-70 year olds having to take a break from the tachy/shakiness with sitting on a bench in the middle of the grocery story ....LOL!!! feels a little awkward for sure!

hmmm, if your doc said it stopped abruptly it might be atrial tach -- was that when you laid down? or can you pinpoint specifically the point in time (what were you doing -- lying down after hiking, standing and hiking, etc) as to when that strip showed what he thinks is atrial tach? it's hard to say without seeing the strip, so cant wait to see it! I thought mine terminated fairly abruptly the other day when i was continuously recording myself at work - i was going at about 170, felt like crap so i laid down with the ecg strip still recording, and the rhythm terminated - but not to a tachy, to a brady! lol - actually had a brief little benign AV block......it seems like though, that when i get this wierd flutter thing i have been getting over the past year or two that it comes on after a really bad POTS event (sinus) and when i go to lay down - and the rates slows gradually, and then WHAM, a 6-9 beat fast abrupt run of something and then it terminates....havent been able to catch it though on ecg .....argh! i definitely could see some overlap between true conduction abnormality being triggered by autonomic dysfunction, so you definitely could have both - hope not though! just adds to the chaos! i DO think you should ''re-enact'' the moment you felt what you did while hiking by doing a t-mill with your cardio on a steep t-mill incline, do it for as long as you can without passing out, and then lay down afterwards to see if the rate will gradually slow and then go back to normal sinus or if you slow, t hen go into a fit of atrial tach, OR go into atrial tach while still on the t-mill and exercising and not after going supine......

[flop]

Also, Flop, I have a question about the sinus tachy you mentioned and asking me the frequency. I have elevated heart rate everyday...walking, stairs, housework, getting up, exercise, etc, etc. I don't feel palpitations or fluttering...just racy...and it's usually 130-160. They said all the recordings were sinus tach...but one looked like atrial tach.

Hi Lauren, sorry to catch up with this topic so late on. If it is still relevant, I'll answer your question about frequency of tachy. I get the POTS sinus tachy everyday, it is slowed down by my small dose of beta-blocker but my pulse often goes from 60/min sitting to 100/min when I stand up. If I stand for a long time or climb up stairs it can go crazy to 170/min. I am totally unaware of my pulse changing like that unless I really exert myself like trying to run or exercise too much. I only know what my pulse rate is because I sometimes count it or wear a sports heart-rate monitor to see what is going on.

My palpitations are totally different. I suddenly feel a lurch in my chest and am aware of my heart pounding really hard and fast, along with that I feel breathless and can get chest pain and feel dizzy. The palpitations only last about 10-30 seconds and suddenly stop and I'm back to normal again. Now I'm on beta-blockers I only get the palpitations a couple of times a year and as we think they are atrial tachy I just ignore them.

My EP study was done before I got severe POTS symptoms (think I probably had mild POTS even then). I was getting a lot of palpitations and we have a family history of serious ventricular rhythm problems, some of my test results suggested I might be having a ventricular arrhythmia (late potentials on signal averaged ECG) so the EP was the logical test for me to have next.

Before my EP study I had already had a maximum stress-test, the consultant kept my HR at 210 for several minutes, a normal stress test would have stopped at a lower HR than that.

I hope that you are able to make a decision about what to do next about investigations. As I said before - go back and talk through the options with your EP, or try another doctor for a second oinion if you don't feel comfortable with the first one. A diagnostic EP isn't too bad but an ablation is a big decision that you need all the facts before you can even try to make a decision.

Flop