cardiactec Posted November 18, 2007 Report Share Posted November 18, 2007 Hey all, I have been out of the loop here for a bit......I was admitted last weekend to ICU after being at work and ONCE AGAIN going into a non-sustained v-tach. ( ............I am frustrated at this point because my EP thinks that the V-tach is just from progressive neuro disease (heh, of which they cant put a diagnoses/name to except for POTS!) .........I have spoken with a few different doc's who specialize in pots and NONE of them have had patients that have gone into V-tach FROM pots. my EP basically is having a pow wow with other EP's in the area, also has tried to get ahold of blair grubb (and he hasnt returned his phone calls), has tried to get ahold of mayo (hasnt returned his phone calls), and meanwhile is putting me on desmopressin.............this WILL NOT take care of the v-tach issues, but is more of a treatment for what he believes is "all POTS" ....................I really burnt out on this.............I have tried to get ahold of docs in boston and none of them are available for appt until next december! it is interesting in that for the past five months i have caught about five different rhythms on me, while at work....sometimes i wonder what would happen if i wasnt in the profession i am in -- no one would EVER have known that any of this was going on with me.................but then again, it doesnt seem like anyone is willing to do anything about it anyway............. ( Just filling you all in on the latest and greatest....-cardiactec. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 18, 2007 Report Share Posted November 18, 2007 So sorry that you've been hospitalized. I believe some others on DINET have had non-sustained vtach caught on a monitor. Who knows how many of us have had it and not caught it? I do wonder too whether you are monitoring more than most POTS patients are able to.I am surprised EPs would be saying this has not been seen in POTS patients. Hope you get a treatment regime that works for you soon. Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 18, 2007 Author Report Share Posted November 18, 2007 it's just frustrating because as bad as the pots symptoms and HR's are, I can deal with that about fifteen times better than the accompanying symptoms of vtach, even though it is non-sustained. the feelings of vtach are much worse than pots feelings, cant even come close to how horrible it feels...................just wish something could be done and that someone could figure out why this is happening....anyway, hope you all are doing well and happy thanksgiving. truly THERE IS STILL much to be thankful for. Quote Link to comment Share on other sites More sharing options...
deucykub Posted November 18, 2007 Report Share Posted November 18, 2007 Hi, Cardiactec:Welcome back! It must feel good to be back home; I imagine being hospitalized in the ICU was pretty terrifying. Trust your instincts. Your heartrates are insanely high, and you express often that you believe there is something more going on with your health, remembering your previous posts.I thought when I was first diagnosed with POTS that there was more the doctors had not figured out, yet. Now, almost exactly a year later, I've moved into more of an acceptance of POTS, after reading all the literature and studies and doing a lot of comparisons and thinking. You're probably more informed about POTS than I am, so if there is still a little voice in the back of your head saying something doesn't quite fit, then you should probably listen to it. We have an innate way of knowing when we have found the correct and complete answer. At least, that's my opinion. Quote Link to comment Share on other sites More sharing options...
pat57 Posted November 18, 2007 Report Share Posted November 18, 2007 this may be a stupid question but would an anti arrhythmia med help?I'm glad they are having that pow wow. Sure hope its fruitful-lets us know. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 18, 2007 Report Share Posted November 18, 2007 Yikes! I'm glad you're out and back!I have to admit, I don't know much about arrhythmias and what they mean. I'm glad you do! I'll have to read up and learn more.Anyway, I'm happy that you're home!Amy Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 18, 2007 Report Share Posted November 18, 2007 For those (like me) who want to know more:http://www.nlm.nih.gov/medlineplus/ency/article/000187.htm Quote Link to comment Share on other sites More sharing options...
mom4cem Posted November 18, 2007 Report Share Posted November 18, 2007 I'm so sorry you are going through this. I wish I had some insight to give but I don't. I don't know much about the correlation between dysautonomia and arrhythmia except that they do happen. Everything is unbalanced, why not the cardiac system too.Hope you are feeling better. Quote Link to comment Share on other sites More sharing options...
doctorguest Posted November 18, 2007 Report Share Posted November 18, 2007 Sorry you're having troubles. This was probably discussed by your doctors, but could one of the medications that you're taking cause non-sustained VT? Sometimes new things appear because things progress, and sometimes because the medications used to treat the original problem cause a new one. If you've never experienced this type of arrhythmia before, going over your medications' side effect profile with a cardiologist and a pharmacist may be very helpful. I also have not seen patients with POTS having problems with ventricular arrhythmia from POTS, so I agree that you may be experiencing another condition, in addition to POTS. I hope you're able to find an EP who is willing to go the extra-mile and figure this all out. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted November 18, 2007 Report Share Posted November 18, 2007 Gosh, you sure hit a rough spot there!You know so much more about the heart and rightly so.Is a Vtach like a PSVT?I only "captured" a PSVT during my ttt recently at Mayo. I started out with a fast heart rate that kept climbing and then it felt like a bump thud in my chest and my heart did all sorts of weird things. I suppose it was a blessing that they captured it but I know it only happens when I am uncompressed and standing too long and feel the heart zip off... Naturally, I don't usually walk around uncompressed or stand still! Maybe there is something else going on with your treatment plan? I don't do meds, I can't, but could you see if you were arrhythmic right before the spell?If it helps, I have done nothing to treat this rhythm issue but to strive to avoid it from happening! I am doing okay. Except for the recent bout of prinzmetal's angina...but that is another story. hope you get to a level place soon!feel better,tearose Quote Link to comment Share on other sites More sharing options...
ellen Posted November 19, 2007 Report Share Posted November 19, 2007 Cardiactec, How would a typical POTS person know if they had V tach? I use a sports heart monitor and my heart rate jumps from 80 when I'm jogging to 180 for only a few seconds when I stop. Occasionally, not predictably. I have never had a holter monitor, so how would my doctor know if I (a typical layman) have V tach. -ellen Quote Link to comment Share on other sites More sharing options...
Maxine Posted November 19, 2007 Report Share Posted November 19, 2007 I'm so sorry your dealing with this non-sustained v-tac. I'm sure it must be pretty scary.Have you seen a neurologist? If there is something wrong with the medulla/brain stem area of the brain, it can cause arrhythmias. Something to check out if all other causes are ruled out. Here is the link that explains functions of this part of the brain: http://www.answers.com/topic/medulla-oblongataI have had doctors tell me that this part of my brain has nothing to do with the ANS, or heart function when I told them that I had cervical/cranial instability causing compression on my brain stem, and asked if it could cause ANS problems.Anyone who has heart arrhythmias, and a cardiac cause can't be found, then other causes need to be investigated, and one of them should be neurological causes, as this can also cause the ANS dysfunction in the first place.It's something to think about checking out--------.Maxine :0) Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted November 19, 2007 Report Share Posted November 19, 2007 Scary!! I have SVT runs (around 16 beats really fast) that last for about 2 seconds, but they are scary because they take my breath away and I feel dizzy for 2 seconds. Then my heart goes back into rhythm like nothing ever happened. I have these maybe once per month. It was caught on a monitor, but no one ever seemed to think it needed treated. Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 19, 2007 Report Share Posted November 19, 2007 Hi Angela,I've been wondering how you're doing. Thanks for giving an upadate. I'm sorry to hear that things aren't better for you. I hope you can find a helpful treatment.Hang in there.Hugs,Rachel Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted November 21, 2007 Report Share Posted November 21, 2007 That sounds awful! I wonder what kind of neuromuscular thing they are thinking?I hope they are able to find more answers soon! Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 22, 2007 Author Report Share Posted November 22, 2007 hey all --before I begin -- GOOD NEWS -- FIVE YEARS LATER AND POST POW WOW SESSION WITH EIGHT DIFFERENT DOCTOR'S -- two from mayo, one from new york, two from boston, and three from here in maine and I'm getting my EP study and hopefully confirmation of what is going on. that being said, ALL OF THESE DOCTORS agree that ventricular tachycardia is not part of POTS nor have they ever seen it in any of their pots patients in particular. they dont know what it causing it. also, they arent sure if the POTS is really POTS or instead an atrial tachycardia -- or both! BUT the EP study will help to rule out some things..............to answer some questions -- yes, i have seen several neurologists and have had MRI's and other neuro testing and it all has come back normal. I havent changed any meds and actually have not been on any med except for zofran off and on, so meds dont have any part of the v-tach. everyone is different in how they present with v-tach. symptom-wise, some people arent even symptomatic (unless sustained VT) with nonsustained VT. for me, the symptoms are quite severe -- and differ from "POTS", if that's what I have to begin with...........with "pots" or we'll just say SVT, i just feel tired, a little wobbly and woozy. with ventricular tachycardia, i actually feel MAJOR palpitations ONLY in my neck. it almost feels like a fluttering sensation or a "ripple" effect. I feel like passing out, I get tunnel vision, and basically feel like death warmed over. just a side note, SVT and VT are completely two different rhythm disturbances. SVT stands for supraventricular tachycardia -- which includes a variety of tachyarrhytmia's that originate from the top chambers of the heart (the atria). sinus tachycardia, which occurs with the POTS patient, is a type of SVT, but NOT a PSVT (the P stands for paroxysmal, meaning the rhythm starts and stops abruptly and generally does not originate in the sinus node -- unlike SINUS tachycardia that DOES originate in the sinus node). ventricular tachycardia comes from the lower chambers of the heart, not upper chambers, so it is not an SVT. usually ventricular tachycardia's cause symptoms that are a little more forceful feeling than SVT's because the ventricles are much bigger than the atria (where's SVT's occur) and to put it simply create more UMPH behind the beats they create, so generally the feelings or palpitations are to a greater severity or sensation than with SVT's. generally, the trick to determining whether a nonsustained VT or SVT is with a holter or event monitor because for some people, the symptoms may be the same (or none at all) and so waveform morphology via ecg must be the ultimate diagnostic tool for determining SVT from VT. anyway, that is the latest and greatest.HAPPY THANKSGIVING TO YOU ALL! Quote Link to comment Share on other sites More sharing options...
Tessa Posted November 22, 2007 Report Share Posted November 22, 2007 Hi CardiactecI am so sorry to know that you have that bad last weekend, but hope you are feeling better now. It seems that they are close to something important about your health. I hope you can get the clues to deal with it as soon as possible.Take care,TessaP.S.: Happy Thanksgiving to you all! Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 22, 2007 Report Share Posted November 22, 2007 Even if it turns out you don't have POTS, we'll still let you hang out with us! I hope you get answers soon. It sounds like you're getting closer!Amy Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 22, 2007 Author Report Share Posted November 22, 2007 LOL, thanks Amy -- even if I dont have POTS, I'll always be a POTSY at heart (no pun!) since I've spent the past five years thinking I have POTS. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted November 22, 2007 Report Share Posted November 22, 2007 Angela ~ thanks for all of the info. I don't even know that much about my SVT. Keep us updated on the POTS vs. NON-POTS thing!!! Quote Link to comment Share on other sites More sharing options...
pat57 Posted November 23, 2007 Report Share Posted November 23, 2007 Sure hope this becomes a breakthrough toward effective treatment for you, fingers crossed. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 23, 2007 Report Share Posted November 23, 2007 And please remember cardiatech, that it's always benign until it's not...LOL. If they are standing there for 30 seconds, give em a swift kick.I do not tolerate my ventricular rythyms at all. They are completely different for me too. The weird thing is, I don't feel the vtach as forcefully as atrial arrythmias. Maybe because I have no perfusion at all with vtach. I feel grey faced, can't sit up, and feel like vomiting. It's awful.Anyway, I hope it goes well for you and they discover what's up. What I wouldn't do to say I had that many doctors taking care of me....how pathetic is that???? morganmeister Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 23, 2007 Report Share Posted November 23, 2007 I sure hope the EP study provides you with some answers. Let us know how things go.Rachel Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.