Arrhythmias and holter issues

[Aggie85]

Ok, I too am having trouble posting on the heart talk forum and there doesn't seem to be a solution yet. So..... Will try to post here to get the question out. We'll use whichever forums are working I guess. Sorry if steam on consciousness, one of the problems I'm encountering is the forum won't let me out space between paragraphs, so I'm using ..... To designate a break. .... HERE'S THE QUESTION: Does anyone have a good forum website to recommend to engage in discussions more related to arrhythmia issues? I'm having very occasional episodes of a fluttery feeling in my heart. It is always at night or early morning. Usually waking me up from light sleep. They are very usually short in duration and not usually with any palpitations other than the feeling of fluttering. I can definitely feel part of my heart beating much, much faster and out of synch from the new valve. My very loud, thus easily tracked, mechanical valve is staying steady rhythm thru most of these episodes. One particularly bad night, I had several episodes that would last for 10-15 min (they usually only last seconds, just enough time for me to notice it). I tried holding my breath to see what that would do. My heart rate would slow down and get in synch again. After I'd be breathing for a min. or so, the rate would speed up and eventually get out of synch again. This happened consistently until rhythm would suddenly synch up and stay that way. I'd fall back asleep only to be woken up a couple hours later with same thing. I eventually dug out my old stehescope and listened in to make sure I wasn't just feeling a pectoral muscle twitching. I could distinctly hear the valve clicking away AND a 2-3X faster out of synch beating from the atrium. .... I had mentioned rare flutter feelings post op, so my cardio put me on a month long 24 hr. Holter monitor, where I can alert for things I feel and then my Dr. gets a report of either my alerts or any other non-sinus activity. ..... My question I'm trying to look for info on is about issues with the monitor. I KNOW what I'm feeling is real, quantifiable and not in my head. But, my cardiologist keeps saying nothing is showing up even when I've alerted that I felt something (like what I just described). Even the one where I purposely messed with my heart rate by adjusting my breathing, didn't show anything other than normal sinus rhythm. Occasional isolated PVCs but even these aren't registering right. I have 4-6/hr but monitor only pics up one every few days. With the valve, PVCs are VERY easy to hear. ..... So why isn't the monitor picking up the arrhythmia? ..... Ive checked with the LfeWatch company and they say the leads are hooked up right and they are getting good signal and appropriate sinus rhythm. I've been doing some googling and found out about a different ECG lead set up (Lewis Lead,v1) that's supposed to be better at picking up atrial issues, which I highly suspect this is. ..... I was hoping to find a site like ours here where I could get information from others on what I might be feeling and issues with getting atrial arrhythmias documented on holsters or ECG. But, I'm not having much luck. The few sites I've found seem to have no one replying on them (answers, if any are several months old) or filled with hyper-panicky people who are probably causing their arrhythmias just by their lifestyle or over anxiousness. I don't mean that to sound as callous as it sounds. I can certainly attest that it is very uncomfortable and attention getting when your heart suddenly starts doing flip flops or feels like someone is standing on it. But to write on a site, "Help, I'm 18, I've been drinking and my heart feels like it keeps stopping and I think I'm dying,..." (If it's that bad RUN don't walk to the nearest phone and dial 911. DO NOT write a web forum and ask what's happening.) .... Anyway, anyone got a good heart arrhythmia forum? Advice or insight on why holter isn't picking up obvious rhythm issues? Thanks, Linda

 

[ejc61]

I'm having the same problem posting.

 

[epstns]

Aggie, Are you SURE your heart rhythm is going out of sinus? Sometimes we feel like something is amiss, yet electronically nothing is wrong. Perhaps you are feeling things happening that do not mean you're out of synch.

I have a pacemaker. It records any heart activity outside its "limit" parameters, and thus will record every episode of afib. There have been times when I was "sure" I was in afib, but at my next interrogation I was told that I was not. The EP doc knows for sure when or if I have an episode of afib, and although I sometimes feel what feels like "funny rhythm" it hasn't been a recorded event.

Just thinkin' . . .

 

[Aggie85]

Epstns, some of the times I'm not too sure because the feeling is very subtle. I assume that when the atria beat separately from the rest of the rhythm, it's considered out of sinus. Maybe I'm wrong and getting terms mixed up. But the other night the episodes lasted long enough that I was able to listen with my stethoscope (usually it ended before I could get my steth set up). My mechanical valve is VERY LOUD and distinct even without the steth. I could quite distinctly hear the valve clicking at a different rate and much slower than what I could hear coming from the atria. Also, if I held my breath the rate would slow down and I could, then hear the heart beating as one. It was very distinctive and clear that when I started breathing again, as the heart continued to beat, the rate would speed up and within a few beats there would be two distinct sounds of a few beats and then the valve going. When I called the monitoring company in the morning to ask about a symbol that had shown up on the phone, I also asked them what they had picked up the prior night. They only got a few isolated PACs and isolated PVCs thru the night. My understanding was that Atrial flutter was when the atria beat faster than the Ventricles but that the impulse wasn't sent outside the atrial parhways and so the ventricles wouldn't contract at the same rate. AFib was faster and not necessarily in rhythm but also transferred to the ventricles so they too would be beating faster. I'm not too anxious (more curious) about all this because I'm pretty much asymptomatic except for what the heart itself is doing. There's no dizziness, shortness of breath, no syncope, ect. Basically feeling fine. But I would like to know what it is my heart is doing and trying to find out why nothing would show up when I can distinctly feel and hear it. ? Thanks for trying to verify what I might be experiencing though. It's just frustrating to be feeling and hearing weird things going on only to be told, it's not anything anyone else can see. NewMitral once told me how he was trying to get his Dr. to believe something he was experiencing, so he recorded the noise his valve was making out of rhythm on his cell phone. Then the Dr. believed him and did further checking. More though for this post was to find out if a similar forum exists for rhythm issues specifically. Linda

 

[pellicle]

sounds rather like this http://en.wikipedia.org/wiki/Palpitations

I get it now and then

 

[Aggie85]

Pellicle, yep, I know lots about palpitations, these are different. I had lots of them before surgery, actually many times throughout my adulthood. All different feelings and patterns, but the heart beat was always in synch even if things felt weird. Until I started having SOB with them just prior to surgery, I knew they weren't serious, just annoying. This is different, it's a prolonged period of two parts of the heart beating to different drummers. But I do admit that I'm more aware of it because I can hear my valve so clearly. Especially at night when all is quiet, then I feel my heart doing crazy stuff. I actually ignore the double beats of my valve, because I KNOW they are benign PVCs since they are isolated. I'm not under any particular stress. I try not to focus on my heart unduly. I'm quite skeptical on what's going on with me. For longest time, I assumed it was my pectoral muscles or other deeper muscles spasming that I was misinterpreting as heart stuff. Then I had the prolonged experience last week that literally woke me up in middle of the night and then continued for several hours. No, my frustration is that I can clearly hear and feel something markedly different going on, but being told nothing unusual is happening electrically. Keep being told, normal rhythm but to me normal rhythm is NOT one part of heart going 3X faster than another part. 90 percent of the time all is in synch and ticking along fine. It's just these odd periods when they don't that I'm trying to find out why the ECG doesn't register something is happening??? I wish I had a way to tape record what I was hearing AND have the ECG recording. If it would just happen while a "professional" was listening, so I could say; "see that's what I mean..." then I'd feel less like I'm being blown off just because nothing is showing up on the ECG. Was looking for a forum where others with palpitations and arrhythmia issues might have experienced the same thing. I spoke with the LifeWatch clinician this morning. She said they had recorded several PACs and a few associated PVCs that night but none strung together, all isolated. Otherwise, all was normal rhythm all night. Oh well, I guess I'll blow this off until if at some point I start getting dizzy or having other symptoms to correlate with the bizarre beating. It's like going to the car mechanic with them not being able to recreate the noise you keep hearing! Linda

 

[Freddie]

Aggie, I sent you a PM, hopefully it will go through.

 

[Aggie85]

Thanks Freddie. It came through but wouldn't let me PM reply. It's a shame this site isn't getting it's issues resolved faster. I really liked it till it was so hard to use.

 

[Aggie85]

I think I found a good Arrhythmia Forum site for those interested. It's SkippingHearts.com. I've just registered and only just started exploring it but it looks promising. Check it out if you're heart has a carefree attitude towards beating. Linda