calypso Posted September 21, 2004 Report Share Posted September 21, 2004 I have given this new symptom my usual three-week trial period (because I have a lot of others that tend to come and go in less than a 3-week period) and this one is horrible.I am having what I am sure are PVCs or PACs, which of course I have had before, but now I am having them EVERY FIVE SECONDS consistently. AAARGH! They are absolutely driving me crazy. I tried taking a higher dose of beta blocker, even cutting it out completely -- nothing seems to make them any better or worse. I have tried no sugar, more sugar, no salt, more salt, etc. All I can figure is they are stress-induced or something.I have made an appt. with my PCP just to make sure they are actually PVCs and PACs and not anything more dangerous. I see him next week. I have noticed I get a sudden sensation of breathlessness and an urge to cough when I get them ... although at other times, I seem to not notice them as much -- anyone have these sensations?Amy Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 21, 2004 Report Share Posted September 21, 2004 i almost always have a cough trigger with my arrythmias. my hubby always knows when i'm having them because it's a weird sudden cough. i go through spurts where i have jillions of them and then none for a bit. but the darn things always come back. morgan Quote Link to comment Share on other sites More sharing options...
blackwolf Posted September 21, 2004 Report Share Posted September 21, 2004 Ditto, I have them in spurts too. I have had a lot lately myself. Sometimes they make me cough, sometimes I feel like there is a hand pushing on my upper chest and throat, it doesn't hurt and I've been told by my cardio that it isn't a "bad" rhythem, but it still is uncomfortable, and once in a while, scary. I do know that sometimes sugar can cause my trouble, but most of the time, it comes and goes as it pleases.Blackwolf Quote Link to comment Share on other sites More sharing options...
briarrose Posted September 21, 2004 Report Share Posted September 21, 2004 Ok - I've had enough king of heart event monitors now to know pretty accurately what rhythms I'm experiencing. When I have shortness of breath and a cough with a flutter it has been documented as non-sustained V-tach.The other stuff that I have is usually PVC's and PAC's, no real problems except for the horrible feeling. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 21, 2004 Report Share Posted September 21, 2004 I get these, and periodically I get them very frequently like you describe. They are forceful and frightening and I feel like my breath is knocked out of me too when they happen--I understand how scary it is. The last bout I had with them lasted for a couple of weeks and then disipated. I have also not found anything to really help when I get (for lack of a better term) a flare up of PVCs/PACs. They are most likely totally benign and also will probably go away eventually, at least for awhile. Have you had a halter monitor on when you were having these? That should set your mind at ease. Take care, Katherine Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted September 21, 2004 Report Share Posted September 21, 2004 I also have flare ups where I get continuous PVC's and PACs. I seem to cough with them also. I'm not sure why PVC's trigger a cough?Have you worn any event or holtor monitor? I'm doing the event monitor right now, I do one every few years to see if any thing is changing. Of course I haven't had any all day PVC flare ups since I've been using the recorder.Hope you get some answers.GayleP Quote Link to comment Share on other sites More sharing options...
calypso Posted September 21, 2004 Author Report Share Posted September 21, 2004 I had an event monitor in April and a Holter last December. So it's been a while, and I am sure I had some PVCs/PACs then. I was told these are harmless so long as they don't find me to have any heart disease. I just can't figure out why all of a sudden they would flare up. And I still worry about having undiagnosed heart disease because of the fact that I have shortness of breath and swelling that gets better after lying flat -- seems like poor heart function to me, but I have been told all of my tests are normal.I just don't understand how my body could be malfunctioning so badly, yet I have nothing actually wrong. Amy Quote Link to comment Share on other sites More sharing options...
briarrose Posted September 21, 2004 Report Share Posted September 21, 2004 BTW - I didn't know what all my rhythms were until I asked for a copy of my heart monitor reports. They neglected to tell me, just told me not to worry. They said sinus tach, PVC's and PAC's, it wasn't until I got the report and saw the V-tach and they now occasionally mention it to me. Quote Link to comment Share on other sites More sharing options...
leah1321 Posted September 21, 2004 Report Share Posted September 21, 2004 Why is it that they call these benign? I know they are not malignant, since they do not kill us. However, benign implies good as it is from the Latin word bonus, meaning good. I do not feel like these PVC's, PAC's, TAC's and whatever else we get is good. I have had event and holtor monitors and I get so many of these things and they tell me that I have them and who cares, they are just benign. They cause chest pain, wake up, make you out of breath, and just feel terrible. I campaign they change the term benign to something like, eh it won't kill you, but it sure hurts arrythmias. I used to have IST and V-tach and some other malignant one and needed to have a cardiac ablation. I had damage to my heart that is minimal, but was rapidly getting worse. My doctor feared I would need open heart surgery. The ablation was successful in getting rid of the malignant stuff, but it did not get rid of the other arrythmias or the tachycardia. Now my doc is like whatever, deal. I hate that everyone on the planet gets them, you just notice them more with this disorder. I think we notice them more because we have a lot more and for some reason they make us very uncomfortable. Obviously, our doctors don't actually get many of them. Sure the heart miscues sometimes in every human, but many many times a minute for hours, hmm that is a little difficult to ignore. Benign, hmph. (Rant meant to be a little sarcastic, not actually completely embittered by the system) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 21, 2004 Report Share Posted September 21, 2004 I know, Amy, it is hard to believe that nothing is terribly wrong. (And, who knows why they flare up? I have the same question as I can see no pattern or trigger in my case either.) But, if you have had a pretty complete work up , the liklihood that you have heart disease is very very low. The symptoms you describe, the swelling, shortness of breath and the PVCs/PACs are all common POTS symptoms. So, it's not that you have nothing actually wrong, it's just that you have nothing life-threatening and nothing that is expected to lead to heart disease. As Merrill stated in a previous post, the heart is generally (unless malformed) a strong and flexible muscle, able to withstand more than we realize.One question I do have, in general, though, is--what happens when a POTS patient DOES develop heart disease? Certainly some of us will develop heart disease one day--not b/c of POTS but due to other factors, including just aging/genetic factors/etc. Will these problems such as sinus tach, PVCs, etc then be dangerous and contribute to worsening the condition? Anyway, this is a concern I do hold in the back of my mind, even though the women in my family have been free of heart problems and have died of other conditions associated with aging. I know I probably should just not worry about it right now, but I am really wondering how POTS impacts women with heart disease.Katherine Quote Link to comment Share on other sites More sharing options...
Merrill Posted September 21, 2004 Report Share Posted September 21, 2004 That's such an interesting question, Katherine! You know, the diagnosis of POTS, which really is an umbrella term that describes so many different symptoms (as evidenced too by the wide range of problems people on this board suffer from), is still so new in the grand scheme of things ... Researchers are just beginning to understand the mechanisms of the autonomic nervous system--I imagine it'll be some time, generations maybe, before they'll have studied enough people through to advanced age to know the answer to your question.Take care, m Quote Link to comment Share on other sites More sharing options...
justin Posted September 22, 2004 Report Share Posted September 22, 2004 about why it's suddenly getting worse for you....i wish i knew the answer to this question (generally). cause the other night i had several PVC's in a row within a half a minute. which i'm sure is nothing compared to what some of y'all go through, but seeing as how i hadn't had hardly any PVC's in so many months, it came as something of a rude shock. i couldn't trace it to anything that i'd been doing (or not doing) or any meaningful circumstancial thing. so of course i began to worry about it, since i couldn't figure out an explanation....it's hard to accept that it's just something that happens. sometimes symptoms are worse and sometimes better. and likely this is what i'll have to look forward to in the future. it's frustrating to get better (kinda) and then have it taken away. does that mean that i never got better in the first place? grrrrr.... Quote Link to comment Share on other sites More sharing options...
calypso Posted September 22, 2004 Author Report Share Posted September 22, 2004 Wow, what interesting comments since I last checked these boards this morning! I agree, Katherine, that what the heck happens to us if we actually do have a structural heart problem -- i.e., coronary artery disease, etc.? My dad died of CAD due to diabetes; his younger brother also just found out he has diabetes, and unless I suddenly turn into a marathon runner, there's a good chance I will get it too. And that disease alone wreaks havoc on the autonomic nervous system and circulatory systems, let alone POTS. Maybe that is why I worry so much. I kind of always had a feeling I would get those problems in life, so I was really hoping to at least have my younger years to not worry about anything. I feel like even those have been taken away.OK, enough pity party. I wish all of us good days of health in our future.Amy Quote Link to comment Share on other sites More sharing options...
JLB Posted September 25, 2004 Report Share Posted September 25, 2004 This is the symptom that really has the potential to wreck my life, the heart rhythm irregularities. I can handle almost anything else (although the dizziness is tough to manage at times.)Question for everyone: Those of you who are able to exercise, do you find it helps with the PVCs, etc? It helps me a lot to get up and get moving on the days when I feel able to do so, and the h/b is all wonked out. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 27, 2004 Report Share Posted September 27, 2004 JLB--Honestly, I don't think anything really helps me when I get a flare-up of these, except to wait them out. It can go on from a day to weeks for me. Overall, exercise DOES help me with POTS symptoms though.Merrill/calypso--there is still so much to understand about this condition--you're right--we are the guinea pigs--potentially. Let's hope some things can be learned in our generation that are helpful to the next. Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted September 28, 2004 Report Share Posted September 28, 2004 <<I have noticed I get a sudden sensation of breathlessness and an urge to cough when I get them ... although at other times, I seem to not notice them as much -- anyone have these sensations?>>Amy: Oh, my, yes! I could have written that precise description, as well! For what it's worth, I went through a period of about six months where I'd get ectopic beats nearly every single day - sometimes for hours on end, and with a frequency of many premature beats per minute. It was maddening and terribly frightening - at least until I'd been reassured by two cardiologists, an electrophysiologist, and at least two different ER docs that the things were 'benign'! Like you, I was never able to isolate any triggers. But just as they came on in full force, they eventually abated for several months. (I'm going through another bad spell lately, but I think I can blame this one on stress!) Like other POTS symptoms, they seem to wax and wane with me, with no apparent pattern. On the topic of whether exercise helps or aggravates, I have to say my own data is inconclusive! As many of you know, I'm a bit time exerciser (marathon runner). When I'm going through a 'flare up', I don't notice the irregularities WHILE exercising, but often they are quite bad once I finish working out and have 'cooled down.' When I'm in a good phase, the exercise doesn't seem to aggravate the ectopics, though. I agree these are one of the worst symptoms (mentally) to cope with! RunnerGirl Quote Link to comment Share on other sites More sharing options...
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