So my EP has finally looked over my EKG that was taken when I had an episode of sudden syncope... however I am getting the impression that since this study is from Spain/ not his testing he doesn't believe that it is 100% correlated. How could it not be, the time matched up prefectly. Many other EPs determined it to be related... so why is he questioning it.
Anyways I was under the impression that the once he had this EKG he would be able to ablate... well today at my appt he told me that the rhythym is definitly VT (duh) and that it could be coming from one of two places in my heart so he can't just go in an ablate. He also seems to think that perhaps the problem went away on it's own, since it has been awhile since I've had an episode.
He wants me to try to last 3-6 more months with the loop recorder and hopefully record PVCs, triplets, couplets basically any little bit of VT and then he says he will do ablation, even if I didn't feel them because of they sudden faints it has caused in the past. He wants me to do what ever I can do to have one recorded.
What is frustrating though is that he won't use triplets and such from past studies.
Problem is I almost never feel these and they are pretty infrequent. So I need suggestions on what I can do to help trigger them.
Another problem that I have is that I cannot go off my beta blocker because my inappropriate sinus tach is so severe that w/o the bb I end up in the hospital.
Another big problem is the the loop recorder has been hit and miss with working. More often than not it is not working and recording "aystole" events but it's just not sensing the heart rhythm. they have rest set the paramaters time and time again but they just can't get it right. Because of this most or all of my recordings are gone when I go in to have it read, especially ones that could have what we need because I can't do the button thing to record them because I usually don't feel them, or if I do feel them I am grabbing my chest and not thinking about finding my stupid button! Today when I had my recordings taken off I had 73 recordings (that is the max it will hold) and all were within the last 3 hours!!!
So my goal is to provoke one of these, feel it and get my button because then it is not deleted and recorded over when it gets full.
I realize this is a bit backwards but I need all the help I can get!
I told my EP that I would much rather try the EP study again and just have him ablate, but he doesn't want to he want to wait, I explained that I hate waiting for me to basically faint... to which he replied
'lots of people faint everyday and they are fine" ughhhh so annoying, I'm not lots of people, I'm myself and I know what I and feeling!
I really want to just insist he take the loop recorder out, because I think he would then in that case just go ahead with the ablation because that would be the only choice left.
Sorry this is very disjointed I am just so very upset over this all and cried for about 2 hours straight after seeing him, I left the office bawling... finally have calmed down a bit after some xanax, that my amazing pcp gave me because she understands how horrible this all has been for me (in additon to the heart stuff they have found growths in my bladder that may be cancer and my kidney failure may be back and I was just dx w/ cyclic vomiting) so needless to say I am under a lot of stress
Oh, he also said you haven't fainted in awhile so doing an ablation at this point would be like giving someone chemo because didn't want to get cancer.... umm yeah not the same thing, I betcha if he knew where in the heart it was coming from vs know it could be one of two spots he would ablate right away...
ughh okay enough of my ranting and raving.... any help and ideas are much appreciated :)
First of all, many of us have couplets and they are not referred to as vtach, so lets just let that be known. I am not calling couplets vtach because to do so would cause me to freak out. So, now that we got that out of the way....
I think I would get a new doctor. It makes no sense that he would not accept another doctors findings if there is an actual readout to prove it.
As to wanting to induce vtach--thats really rough. I mean you are asking us--who want to avoid it to help you do the thing that may or may not be dangerous for you. That seems so wrong to me. I dont know. It looks to me like you just need a whole new doctor, and the recorder? I really hope you get the help you need. Perhaps someone else will have some ideas.
Yeah, it is a bit backward. I guess I should explain more, and I realize couplets aren't v-tach, but it a a type of ventricular beat that is not part of normal sinus rhythm. At this point I just can't chage drs, and this EP works at a larger very well know university in a arrhythmia clinic with many other EPs, they have 6 or 8 (can't remember exactly) EP labs and they only take on difficult to treat arrhythmias that other EPs refer to them, so they have great experience, and I could be wrong but I pretty sure even though I only see this one dr, they all consult on cases together because while in the hospital i was seen by almost the whole team.
As far as wanting to provoke this, he actually doesn't even mind if it ends up provoking a fainting spell because aparently the type of v-tach I have isn't dangerous but because of the problems I've had in the past with it (sudden syncope 2-3 times a week) they are treating it. He suggested, caffiene, chocolate, staying up all night and alcohol... all things that he says may bring them out.
I guess I know you guys have gotten very good at avoiding your triggers, that by letting me know what your triggers are it may help me to get what he wants.
Right now my plan is to try my best to get the recording he needs, especially something I can feel so I can be sure it is recorded and saved... and then I plan on going in to the clinic to have my loop recorder read on wed. so I can see if they need to try yet again to change the settings.
Ok, well gee--sure feels wrong--just dont want to have anything happen to you.
Sooo what do I do to avoid pvcs (not that it matters)--ok--here are some thoughts
take a hot shower, then eat a ton of chocolate, have more sugar, Move suddenly to bend over and pick something off the floor (sort of swinging quickly down and up), get over tired, get stressed,
Run around and then lay on your left side while your heart rate drops and eventually pvcs start.
relax, oh--and PRAY YOU HAVE a run of vtach
If you dont have a heart attack or sugar jitters, this should work. Expect to feel lousy the next day though. Seriously I wish you well.
Oh wow; I would run as fast as I could from that EP...sorry to say no matter how "good" he seems - any doctor who says fainting and VT; plus your family history is "ok" isn't very good in my book - the [insert bad words here] would have let me die then I guess... sounds like so many other doctor's I've seen over my life who said pretty much the same thing. That's just my personal opinion and what I would do looking back over 40+ years of being treated this way. my rant's over :P
I posted what I thought in your other thread, not much I can add here - I do nothing to provoke my NSVT runs; but have had them recorded worse with adrenaline pumping - anger, exercise emotions etc
Any clue what triggered it when you were in Spain? have they done a 30 day or longer monitor since your ILR doesn't seem to work well? What was the 73 recordings? pvc's, vt, pac's psvt? how do they read the ILR?
Yeah, I'm really torn about what to do here about the EP... but I really can't switch, emotionally starting over and because there is just no one else to switch too, I really can't travel for this.
I also just spoke to my mom and I guess depending on what happens with the health care bill in congress (the repubs wanting to change/ get rid of it) I may loose my health insurance in the near-ish future... so all the more reason just to do the ablation now.
I'm seeing my pcp on Tuesday and she is amazing, so I will talk with her and she what she thinks and I know she will help me find someone else if she can or talk to my EP and see whats going on.
I just don't understand how a few PVCs or anything could help him at this point in time, I really believe with with or with out the ILR recordings he wants he will be going in with the same idea or where it is, one of two spots.
I've had recordings taken off of the ILR 3 times now, the first time recorded mostly "asysole" events because it was not sensing my heart rhythm, but the recording was always normal sinus rhythm, then there were a few bradys and tachys (NSR), but majority was fake asystole so the changed the settings, the first recording only held about 4 days and it was filled with 2 activiated by me (testers) and I believe 53 others. The second time it was much better, not as many asystole, but still some and a lot of tachys, but it only held about 5 days (73) recordings. The 3rd time it was all asystole and it was 73 episodes in the last 3 hours. So I was missing 15 plus days of events.
To read the ILR I go into the pacemaker clinic and the put this device over the area where it is implanted and it is connected to a comptuer that prints out the results and on that computer the tech can change the paramaters.
idk... maybe the dr just want to show me what it was good that we put this in and thats why I have to wait?
I just need to get this taken care of and soon... I don't get it, he told me well you haven't fainted in a long time so maybe it was a self-limited problem and you wont have anymore problems with it, well great then! lets take the ILR out... no, because what if you faint right after we take it out? well i thought u just said it was self limiting and gone now? this makes no sense
aghh.. sorry for the ranting, so far no luck provking anything, I'm hoping to just get some PVCs or a triplet because he said then he would do it and I've had those before on 24 hr holter and my event monitor, so it souldn't take much or long to do this, the problem is making sure the ILR is working or I pay close attention to my heart so I feel them and can self-record.... which is hard because I'm so used to zoning everything out coming from my heart.
today I met with my amazing primary.... we talked quite a bit and this is my new plan...
tomorrow I am going in to get the recordings from the loop recorder and hopefully it is working I did feel one short run of pvcs and was able to push my button so we should have what we need.... but if not then I will see my EP in beginning of may and ask that he do a EP study and hopefully an ablation... and then take out the loop recorder (because if he still can't provoke the arrhythmia I think it was a self limited thing and it's gone and if he is able to ablate I obviously don't need it any more) then at the end of June I am moving home (after coming back from Spain I moved cross country for an internship) because my internship will be over and my lease up and with what is going on I won't be able to get a job and keep it... plus I am all by myself here no friends or family and that makes this all much harder
so I have a plan now... hopefully tho the loop recorder is working and I got a recordng for my EP and we can just do the ablation (hey, a girl can wish, right?)
in the meantime my primary is finding me an EP to see when I go home and follow up with because before when home I only saw a cardiologist, not an EP and my hometown is in the middle of nowhere.... to even see my primary when home it's a 2.5 hour drive so finding an EP will not be easy!
we shall see how this all goes... fingers crossed!!
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